Christmas cookies.

Every year during the holidays, my mother made cookies. And we're not talking just two or three batches of cookies... My mother's goal was to make as many different varieties of cookies as she possibly could. I remember holidays with fourteen to fifteen different types of cookies lined up in colorful tins on the book shelf. We each had our favorites, of course, and quite often those tins would be empty by Christmas while others were still full. My Dad, in particular, liked peanut butter cookies with chocolate kisses baked on top.

Not being as dedicated, or crazy, as my mom, I usually make three types of cookies during the holidays; two of my favorites, and peanut butter cookies for Dad. Each year, however, Dad has been less and less aware of the holiday in general, and of cookies in particular. This year, as in past years, I brought over a box of my Dad's favorite cookie because I enjoy seeing him enjoy them. Unlike past years, though, this year Dad's caregiver had to feed the cookie to Dad while he sat on the couch, staring straight ahead.

I have no idea what his taste buds are like or what food messages are getting to his brain. It makes me sad to see that he can no longer feed himself, indeed seems somewhat indifferent to food. This whole process makes me sad, and the question always comes up; am I doing these things for him of for me? I can only hope that he enjoyed his cookie and on some level remembered them and the happiness of past holidays.

Seeing Dad.

Lately...I've been seeing my Dad, everywhere I go. It's very strange. I'll be walking along, or in a store, or getting into my car, and I'll see someone, usually from behind, and I'll instantly think, "That's Dad!" And, of course, my rational brain then kicks in and I realize that my Dad absolutely could not be out and about downtown Ballard, for example, and that he is, in fact, probably snoozing in his chair at his home. And it's not always even men! I glimpsed a woman and my tricky mind saw something about my dad and thought, again, "Dad!"

I don't know what, exactly, is going on in my mind. When I look more closely at these people, I see that they don't look anything like my father-but there is some feature, some expression, some physical aspect, that instantly reminds me of him-and I think I see him. Sometimes it's height, or a lanky frame. Sometimes its a glimpse of big, bony, capable hands. I've seen him in a man wearing chunky brown glasses or a flannel shirt. Sometimes its just a thick, gray-white head of hair. I see my Dad in many people these days.

As to why it's happening more and more? When I visit Dad now, I see him get more and more frail. He's slipping away from me bit by bit, and the process seems to be accelerating a lot lately. My dad and I did not always see eye to eye, nor did we always have the best relationship when he was lucid. He's been sick a long time, and it's become a normal state of affairs; but now that he's getting worse, I'm starting to see the cold grip of mortality around him, and I'm already starting to miss him. Does this happen to anyone else? I wish I knew.

So I think that's why I'm seeing my Dad so many places he couldn't possibly be. I think my heart just really wants to see him, active and out in the world again, instead of slowly slipping out of it.

Elders..

I've been busy, or out of town a lot due to wedding activities and haven't had much time to write. It's been interesting to continue to experience this life-changing event without any parents or much family. I visited my Dad right before I left for my wedding just so I could tell him again what was happening and feel that connection to someone who knew me from the beginning, even if he couldn't comprehend what I was saying now. I've been meaning to visit now that we've got our wedding pictures to show him, but haven't yet had the time. I have not been completely without the blessing of my elders, as I experienced on a recent trip to my husband's family.

His mother was kind enough to throw us a party so that everyone, family and friends, who hadn't attended the wedding(which was tiny and private!) could celebrate us. The party was full of people I didn't know and had never met and I was a little apprehensive going in. These were people who had known my husband and his family for thirty or forty years, and I was definitely being submitted for their approval! The overwhelming feeling, though, was that of the elder generation recognizing and welcoming someone into the clan, and that was a really lovely feeling, and one I don't experience anymore in my own family.

My father is the only elder left in my social and family sphere, and he's not present. Plus, my parents didn't really have many friends, so there wasn't that important older social group for me to fall back on. I've been on my own for this. I missed my father, and definitely wish he could have been present during this joyous event for me, but barring his ability to be present for it, I have to say how nice it was to get a little taste of that elder generation, even from people I had never met.

Being.

I recently was fortunate enough to meet another volunteer with my respite program, a lovely woman who had a caring and calm way about her. She had just started in the program and had not yet had much contact with dementia-sufferers, nor did I sense that it had impacted her family life. After our getting-to-know-you chat, we began discussing my experiences, my book, and my father. She explained that her present client had dementia and since she didn't have much experience, she wanted to pick my brain on how best to serve her client.

I inquired how impaired her client was; how far her client had traveled down the dark road of dementia. Apparently, the client was largely withdrawn, but would occasionally interact a little bit with my new friend. The volunteer said that she had tried very hard to be there for her new client, bringing poetry, books, and the newspaper to read out loud. She would talk and tell stories to her client but said after a while it felt like she was just talking to herself, which made us both laugh. It reminded me of the visits I've had with my Father in the last year or two, where I talk and tell stories and he only occasionally interacts with a few standard phrases. Those of us who are close to dementia know how this feels!

I told her that just her presence was a gift for this client. I've seen so often how the elderly or the dementia-afflicted are left alone in their small rooms or in activity spaces while the action of the facility happens around them. By what she said, it sounded like the family was more involved than most, but I told her that reading to her client, whether its poetry or a magazine or even the Bible, bringing music in to listen to, even just talking about her own life was a way to interact with the client, to be in her world a little. I told her that just sitting quietly with her client, like I do so often with Dad, was a way to be present, a way to share herself. I suggested that she try just sitting after a spell of reading or talking.

She looked like the idea hadn't occurred to her, the idea that just her very presence could be a way of interaction, a way of giving. I know that Dad feels me there and feels my love for him, even though no words are being exchanged and I told my friend how lovely that can feel for herself and her client. I could tell that this woman was a gift to all of her clients; just her desire to do her best for her client and educate herself showed her heart. Just be there. Be there for your loved one or your client or your friend. Just be.

Holiday Time.

Well, we're coming up on the holidays again-I can't believe the end of the year is here again already! As always, it makes me think back to all the very different times I've spent with my family since becoming an adult. There have been good experiences and poor experiences-and even some very bad experiences, but I guess the important thing is...I'm still having experiences. Dad, of course, is not.

Dad used to really enjoy the holidays, especially when we were little. I think that Christmas was a very important time for him, deep down. Although there are many things I don't know about how he felt or thought, I do feel this, and I have reason to believe that all the events on the year's calendar were as important to him as to anyone else. He always seemed a little more loose and happy during these last months of the year.

After years and years of being the one who made the holidays happen for my family, I finally called a halt and decided to make the holidays for myself, and for my now-husband. It's exhausting, as so many caregivers (and many women!) know, to create these huge special experiences for family. It gets even harder when one has a chronic health condition. I know that, when he was able, Dad appreciated my efforts to make the holidays special, and that's all that's really important.

He really has no more concept of time or seasons passing, at least as far as I know, and will spend those particular days like every other day in his house. He has stepped off the wheel of shared experiences that make us a society, and I have to respect that.

I doubt I will spend time with him on the actual days, although I definitely will in the weeks before and after. It seems to me that there's nothing about those particular days that will matter any more than another; if I were to make a big deal about them, it would be more about my comfort than his. I'm just going to keep it low-key again this year, as I've discovered works the best for my little family. But I'm also aware that another year has wheeled slowly by without Dad, who will never have the fun of experiencing the holidays again.

Visiting Before the Wedding.

We'll be leaving in the next few days for our wedding, and I felt a need to visit with the one parent I have left, even though he's no longer really present in the world. When I got to his home, he was snoozing in his chair, so I sat with him for a bit, quietly. I noticed that his face seemed even more pale, his eyes a little sunken, with dark circles. It was almost, but not quite, as if I could see his skull through his skin. He just looked more frail in general, and I wonder if he'll make it through the coming winter.

When he woke up, I knelt by his chair and looked him in the face. He seemed a little startled at first, and once again, I was pretty sure he didn't know who I was. It was nice to kneel there and talk to him while he watched my face, his eyes wandering periodically to stare down the hallway. On the whole, he seemed pretty alert, even responding to a few things I said with a, "Oh, that's good.", or, "That's nice". I think these have become stock phrases for him when he senses people might want a response, although I'm fairly certain he hasn't understood what's been said to him.

I told him about the wedding and my fiance, about our classic car, which had recently thrown a belt, about the weather and life in general. I promised we would visit him when we got back and bring him wedding pictures to see. It was just nice to see his blue eyes somewhat engaged again, his face even a little bit animated. It was almost like having a conversation! But most of all, it just felt right to spend some time with my Father before my wedding; to be with him. There is no more wisdom he can impart, no fatherly advice or counsel, but he's still my Dad, and it was nice to get even a semblance of a blessing for an event so important-an event that he'll never know took place.

Expanding and Contracting.

I've started writing down a few of the ideas I want to incorporate into my second book. the story definitely didn't end several years ago when the house was sold and Dad was settled into Assisted Living. As seems to be normal with my family, many more strange and interesting things have occurred, and will probably keep occurring until Dad sloughs off this mortal coil. My life is inextricably tied up with his, and will be until the end.

I've really been thinking about expanding and contracting as the main theme of my writing. Since the events of the book and after, my life has continued to expand and expand in the most wonderful ways. Granted, not all of them have been easy-continuing to learn how to care for and deal with a parent with dementia has not been fun, but it has been life-expanding. Meeting my fiance has expanded my life in exponential ways-he's brought me the world in a way I never expected I'd have it. But with all of this expansion and growth, I can't help but see my Dad's life continue to contract.

We had to move him from quite a large facility, to a five-patient Adult Family Home. This has been a really healthy move for him, but it did entail slimming his life and possessions down even more. My Dad now owns pretty much what's in his room. He doesn't work, of course, or do any of the activities he used to do-he doesn't really go out much, and his main visitor is me and I can't be there every week. Dad's life has shrunk down to his room, house, and caregiver, and that's just how it needs to be.

I feel sorry for the fact that Dad contracted this terrible disease that's done nothing but shrink him and his life-that's why I'm committed to giving him the best life I can. And I'm grateful that my life has continued to grow and change, largely based upon the foundation of everything I risked and learned taking care of him.

Doubts.

I made the thirty minute drive the other day to pay a visit to Dad. It was a hot and beautiful day, one of the few we've gotten here, and I figured I'd probably find him outside on the patio of his house. I parked my car, seeing only another resident in his wheelchair, reading in the shade of a tree. When I walked into the house, I saw my Dad, reclining on the couch with his eyes closed. A young man who introduced himself as the son of the owner introduced himself.

I sat next to Dad, who opened his eyes and looked at me sideways, wary and curious as to what I wanted. Looking into his blue eyes, curious as always as to what sort of recognition, if any, I would see there, I started talking to him, mentioning the heat and the lovely sun. The young man leaned over and said that until a few minutes ago, Dad had been outside walking around and enjoying the sun and that they had just come in for a little rest. This sounded perfectly reasonable, but my constant doubts raised their heads.

The last time I visited, Dad had been snoozing in his room in his recliner. I had seen him at other times, drowsing on the couch or in his chair. Could I really trust them to be doing what was best for Dad and making him walk and exercise? When you finally decide you need to give over care of your loved one to someone else, even if you find a caregiver you think is the most capable and trustworthy, I've found you never really stop being suspicious. You never completely trust that they will treat your loved one well, and not leave them stranded like so many horror stories that make the rounds.

I'm pretty sure I've found the absolute best place possible for Dad. I believe that they care for my Father. The home has great state reviews and inspections, and I stop in unannounced as often as I can. The worst thing I've ever seen is Dad snoozing inside on a sunny day. But I am never, ever free of these quiet doubt whispers, and I figure I never will be. It is the price I pay for not taking care of Dad personally.

Car Show.

A few weeks ago my fiance and I were invited to bring our 1965 Corvair to an Assisted Living Facility in West Seattle. Apparently, they throw a barbecue every year for their residents, residents' families, and neighbors of the facility. This year they were including a classic car show and inviting an Elvis impersonator to sing and perform. We agreed to do it gladly because it seemed the perfect mix of our classic car interests and my work with dementia and hospice. I pictured a little gathering at a mid size facility, maybe five or ten cars, and a few barbecues. I couldn't have been more wrong!

The facility was huge, one of the biggest I've seen, encompassing those who could still live independently, those who needed secure facilities, and nursing facilities. It was obvious they'd done this before, the set-up was huge: rows of chairs placed in the garden, some already occupied by residents; several tables packed with food trays and bowls, with huge barbecues behind them; and a full sound system! I would estimate that there were twenty to thirty classic cars, and easily more than a hundred people. It was something!

We enjoyed being out in the sun, and eating the fried chicken and cobbler with vanilla ice cream. We even enjoyed Elvis' performance-he was pretty good! But what we really enjoyed was chatting with all the elderly residents and their families as they viewed and exclaimed over our car. It seems like back in the sixties and seventies, everyone either had a Corvair or knew someone who did, and it was so fun to see our little car take these friendly people back to their child-or young adulthood, reminiscing about THEIR cars and their lives.

Everyone has a story, especially about cars they have had, and most people don't need much encouragement to tell them! It was so gratifying to see the older gentlemen come shuffling slowly by, aided by caregivers, watching their eyes light up to see our car and the other classics lined up. I loved watching families take care of their loved ones, and caregivers gently encourage residents to dance or sing along. I can't think of a better way to spend a sunny Summer afternoon, and it almost made me wish my Father was a resident here so he could share it with us.

Belief System.

I may have mentioned in past postings that my father was a Christian Scientist. In that particular faith, it is believed that the material body is a reflection of the perfection of God, and that any illness or injury can be conquered, completely cured, by prayer and/or right belief in this fact. Followers pray and read passages from the Bible and other publications written by the religion's founder. When a member becomes ill, their illness is tacitly ignored and denied, although they may still receive offers of help with driving and chores. Even death is acknowledged only obliquely and funeral services are never held in the Church. No one acknowledges that the body is physical and has needs and dysfunctions. I was raised in this faith, but came to believe that it was almost cult-like in its beliefs and was incredibly damaging and delusional.Unfortunately, its effects had already been felt in my own health and well-being.

My Dad continued to believe, praying and reading right up to the point that the words were stolen out of his mind by dementia. I'm sure he felt deeply that whatever was affecting him could be conquered if he just believed it hard enough. Unfortunately, it didn't work that way; in fact, it led to him obstructing us in every possible way, denying he had a problem, needed help, or was in danger. Members of my Dad's Church helped him in his denial, refusing to acknowledge that they saw any strange or potentially dangerous behavior from him, although I'm sure they did. To these people, physical problems, even death, are negative beliefs that just haven't been fixed yet.

Although I disagree strongly with his beliefs, I have tried as hard as I could to ensure I follow them on his behalf as closely as I can; not filling him full of drugs, limiting visits to doctors, and limiting medical intervention.

The other day an old friend from Dad's Church called to check in on him, since he hadn't been to Church in quite a while. I receive these calls periodically, from people that I have known since I was very little. They are all lovely, kind people, but not one of them actually believes that there is anything wrong with Dad, which makes discussing his illness both strange and uncomfortable. Knowing there's no point in saying much, I try to be honest about how my Dad really is, while at the same time, knowing they are mentally denying every word I say.

In the end, I try to be polite, giving them few details beyond that my Dad continues well and happy where he's living. While I appreciate their kindness and their concern for my Father, I dislike these calls. They are able to hang up the phone feeling good for having checked in and happy that they can continue to fit my Father into their beliefs of the world. It tends to bring up bad memories of my time in the Church and my time being ill. I wish I could stop all connection with this harmful faith and its dysfunctional followers, but until my Father dies that won't happen. In the end I'm left with their refusal of the truth, feeling conflicted and uncomforted, knowing that there has been no real connection made, and that I must continue to participate in the denial.

Wedding.

Well, my fiance and I are getting closer and closer to our wedding. Little details are being decided on, information being sent back and forth between us and the hotel where we are going to be married. I've had a dress fitting and we've found what my fiance is going to wear. Flight arrangements have been made and hotel rooms reserved. We're planning a very small, intimate wedding in a lovely tropical location, and I cannot wait; but it strikes me that absolutely no one from my blood family will be there with me.

For the most part, that's okay. The couple I have coming are like family to me and have been there for me through some of the hardest things I've faced in my life, including caring for Dad. And, of course, my fiance has become my family. Dad was present for my first wedding, a big traditional family affair where dad wore a tux(he looked great!) and walked me down the aisle. My mother died long before my wedding, so I've never gotten the delight of having a mother to plan a wedding with.

But still, Dad will not be attending-does not, in fact, even realize I'm getting married, and I'm mostly okay with that. When we got engaged, we visited Dad and told him, sitting on either side of him on the couch, my fiance's face engaging his attention. The other day when I visited Dad, I told him again, and while he didn't really understand, I did get a "well, that's just great." from him. The nicest thing, though, was when we took him for a ride in our car. As we were leaving, my fiance shook his hand, looked him right in the eye and told him that we were getting married, that he loved me, and that he was planning to take good care of me for the rest of our lives. Dad looked right at him, right into his eyes, and my fiance swears that he saw a glimmer of comprehension. It certainly brought a tear to my eye to see the two of them together; my fiance, tall and bright with life and my father, stooped and a little frail.

So, at least he knows. My fiance gave my dad the manly courtesy of a handshake and straight-talking, a kindness of heart that is partly why I love him. If he was ever worried about me, hopefully he knows in some corner of his mind that I will be okay. And as we stand together and speak our vows, Dad will be thousands of miles away, quietly wandering through his own mind. I will be happy and grateful at my good luck and fortune, but I will also be a little sad at that moment that neither of my parents are there.

"People talk about the death of a child as the worst thing that can happen," Flora said. "And it is. It is the worst thing. But the death of a parent is a loss of self. A loss of history. Who else really remembers your childhood but your parents? It's like you said about the divorce, that it was as if your history had been erased..." excerpted from 'Perfect Reader'-Maggie Pouncey

I read this the other day in a recent, and very good, book. I thought it was one of the most apt descriptions of what happens when one's parent dies. I experienced this to a certain degree when my mother died when I was 19. I still had my father, of course, but it was my mother who had taken care of me, nursed me through illness, known more about me than any other person alive. As sad as I was, it gave me some comfort to know that some part of my childhood, my child-map, remained in my father's mind. And then he began to lose that mind.

My father isn't dead yet, of course, but my child-map is now gone from him, and therefore, from me. There is no one left who remembers my history, my story, as well as a parent would. Over time, my mother told me many stories about myself as a child, but it's never enough, and some of the details have faded over time. I can only look at pictures and a few of the things my mother wrote down and remember what I can. I am, to all intents and purposes, an orphan, as I have written before. I go visit my father now and I talk to him about events and our lives and times together, but usually there is no real response. I got as many memories out of him as I could in the time he was lucid, there is now nor more time.

In essence, there are no more layers between me and old age and death. One's parents are that barrier, that illusion that we will remain ageless and alive. When those parents are gone, there are no more illusions-it will be our time next. This is a strange feeling, but I've had time to become accustomed to it by now. I don't think I will ever be accustomed, however, to the loss of my child-map, that secret history of myself that only my mother and father could know.

Bereavement.

I've been doing hospice work for over a year now, and I still really enjoy it. It can be hard work, sometimes a little overwhelming, but it's still rewarding. I have a patient now that I've been seeing for a few months and we're really enjoying each other. My patient is 94 and still sharp as a tack. I enjoyed hospice so much that I volunteered to with the Bereavement group.

Bereavement with my organization manifests in two different ways. One group sends out supportive and informative mailings all year to those whose loved one has gone through hospice. The other group, which I belong to, interacts directly with the loved ones of the deceased. We will contact anyone involved directly after a loss if asked to by the hospice nurse; we also set a schedule to call the family or friends one month and three months after the loss.

Sometimes family members are taken aback or a little unsure about why I'm calling, but after I explain my purpose, they quite often take the opportunity to open up to someone they don't know and who they don't have to protect or care for, and it can often be an extremely valuable conversation, for both of us. I've been doing this now for about three months. Today I logged in to the system and perused the charts of the families I had on my list to call. I started with the first patient, looking up how many family members there were, who they were, and their contact info.

I don't know why, but all of a sudden, it occurred to me that someday, perhaps very soon, someone would be doing this for my family. Someone in a hospice program would be accessing my father's information and determining I and my sister were the family members, and preparing themselves to give me a call. I don't know why this hadn't occurred to me before, but my heart literally dropped as soon as it did, and I felt suddenly so sad.

I tend to think of Dad as just living on, being around somewhere, getting worse little by little, but always there when I visit. However, fairly soon this won't be the case, and I'll definitely be enrolling him in the hospice program, and after that, he will die.
And it will be me being comforted by the hospice and bereavement volunteers.

Telling the Story.

I've just gotten back from a week long trip to upstate New York to visit my fiance's family. (Hence no blog posts!) His sister, brother-in-law, niece, and nephew were the last members of the family I hadn't met yet, although I've spoken to them on the phone. They are all lovely, and it was fun to actually meet them face to face and see the home they've lived in for fourteen years or so.

Once again, however, I found myself faced with telling them about myself, my life, and, of course, my father, since he and his situation are so intimately tied up with MY life. They knew something about Dad's illness and our history, but were understandably curious about the details. So, I found myself launching once again into the, by now, short and well-organized version of events. I'm amazed at how succinct and organized seven or eight years have become! It never really gets easier to tell over, and over.

It's still hard, though, even so long after many of the big events, to talk about. It's also hard when they inevitably ask whether Dad recognized me or not. He doesn't really, and that's about the worse thing that people can imagine. She asked about Dad's health care and how easy it was to follow his religious beliefs. She asked about his living situation, and how long I thought it would be before he really started to fail. My fiance's sister was very sympathetic, while still being curious about a situation she'd never been in-one I hope she's never in, but that might just be wishful thinking.

It's just that I always forget that people I've never met who know about our story, will always want to know the specifics and current details-and that truly never gets easier to talk about.

Proprioception.

Dad is so stiff now, I've noticed. He sits almost bolt upright, turning his head only a little to look at what's on either side of him. He walks very slowly now, feeling each step; barely even lifting his feet at all, actually. The doctor thinks the nerve signals from his feet to his brain that tell him how to walk and whether there's solid ground under his feet are fading. He was never the most graceful and easy-moving of men; in fact, I can remember several crashes while skiing and a lot of awkward hugs, but he was athletic and strong, and I know he appreciated that. I remember running alongside him, when I could still run, for miles, and I remember the joy he took in bombing down mogul hills in the snow.

When my fiance and I took him for a ride in our Corvair, I noticed then, too, how hard it was to bend him to get him to sit in the seat, and how his body hardly moved going around corners, only stiffly swaying from side to side. I don't know if its the Lewy-Body or what, but I think his entire body's proprioception is no longer working.

Proprioception, as I understand it, is the term for how the muscles and ligaments of our limbs move and are aware of themselves in space and in relation to other limbs. His muscles are so stiff now, and seem as lost as he is, in a way. He reacts stiffly to everything, to every movement. The other day when I visited, I watched him sitting bolt upright in a lounge chair, unable or unwilling to relax, to slump a little. I see the elderly in a lot of facilities slumped down in their chairs, a victim of gravity. It seems my father has gone the other way, but I still feel sad to watch him, hardly moving, because I still see underneath the man with the powerful arms, breaststroking for miles down the lake.

Age.

What is age, anyway? I was faced with this question the other day when I went to visit my Dad. He was asleep in his special chair when I got there, so I quietly sat down next to him and just enjoyed the peace. I found myself investigating his face and thinking about the fact that he'd just had his 73rd birthday-a number that it took me a little tortured mental arithmetic to come up with but I finally did it, and then was amazed! You see, he just doesn't look 73!

His hair is completely grayish/white now, although still thick, and there are a few age spots on his skin, and the flesh under his chin has fallen, but in general, the man looks like he just celebrated his 63rd birthday! He has very few age lines and his skin is still fairly taut, at least on his face. He certainly isn't a mass of wrinkles, although I suppose everyone ages a little differently. But two things occurred to me.

The first one was that, for me, he'll always be kind of stuck at 65 because that's around when my life started becoming so entwined with his. That's when his disease really got bad and all the years he's lived since don't seem to compute in my mind in a way. He'll always be the age when he stopped being my father, and started being something else, something without an official name but that resembles a child in that I'm in control of his entire life.

The second thing was to wonder whether one of the effects of being unaware of the stresses of the world, and the input of your own past and regrets and hopes and emotions, and the sometimes difficult input of others, might just possibly cause one to age a little less visibly. He has few worry lines because he has had few worries over the last eight or nine years, beyond whatever internal demons the disease caused. His face is slack because his mind is. From what I can remember of my grandparents, they looked a lot older at 74 than my father does now. I guess this might be one benefit of this terrible disease, although not one he'll ever get to take advantage of.

As I sat there with him, communing quietly, studying his face and thinking these thoughts through, I couldn't help but think that this couldn't possibly be what he thought his septugenarian years would look like. This wasn't what he would have wanted, and I'm pretty sure he would have traded looking younger for a few more years of being aware.

Birthdays.

It's July 16th today and tomorrow is my father's birthday. Every summer growing up, my mother would arrange a little party for his birthday, ordering an ice cream cake one year, making it herself another. She would take us out shopping and we would comment yet again on how difficult it was to buy for my father, who wore neither cologne nor shorts; completely eschewed televised sports of all kinds; didn't play golf or any other game of leisure; didn't read popular novels; and, in short, was impossible to buy for. We were left with candy, tools, of which he had many but always needed more, and that classic standby-ties. He never minded, I don't think, not being a very acquisitive person, but I do think he liked the little celebration.

I remember it always being warm, as summer in childhood always seems to be, and we would eat our dinner out on our deck, sitting around the splintery picnic table. Then out would come the cake and the presents and the obligatory singing and my father would sit sheepishly, yet pleased, I think, as we fluttered around him and forced him to enjoy his birthday. I don't think, left alone, he would have even remembered his birthday.

I can't remember the last time I celebrated my father's birthday, but I remember the day each year as it comes around. When he went into Assisted Living, the facility made a big deal of birthdays, and if I couldn't make it on the day, I would see the pictures after of Dad with a birthday hat on, a cake in front of him, grinning to the camera in that same sheepish way I remembered so well. For a while, I sent him a card every year, as well as one for Father's Day, and just because I like sending cards. But I started to notice that the cards would go unopened and forgotten. Dad didn't care about things like birthdays anymore, he was too occupied with the fight to hold on to what was left of his brain. And gradually, I stopped sending cards, because he doesn't know what time of the year it is, and I'm not convinced he needs to know. I prefer to let him wander in whatever time or space he now inhabits.
But each time July rolls around, I'll remember for him what Dad's birthdays used to look like.

Summer Time II.

Sorry for the length of time between posts-I've been out of town for the last week and a half. Thanks for continuing to check in!

It seems to be summer again, thank goodness. It's funny how summer when you are young seems like an endless golden moment where you were the happiest, and nothing but good things happen, and the sun was always shining and hot. You can never get back to that wonderful time.

I had great summers when I was little. We had lake front property and I spent every day with my sister swimming in the cool water. When Dad got home from work, he would shed his work suit and pad down to the lake in his shorts, thongs, and a towel. One of my best memories is of him ducking underneath the water and letting me climb up onto his shoulders as he crouched down, then standing up quickly with me on his shoulders so I could then dive off. I loved that. Dad loved the lake, and even after his dementia was becoming worse and worse he would spend hours at the water, watching the ducks and staring at the horizon.

Summer was when we took three week long family vacations in our camper, crossing the country some years; other years going down to California and the beach and Disneyland. If you've read the book, you'll know about the summers we spent in the mid-West, looking at airplanes; again, something that involved my Dad in a vital way.

Summer also has bad memories for me. It was summer when I got sick for the very first time, and the second time, as well. And it was August when my mother died, taking her last breath late one sweltering night as we crouched around her. I've had other friends die in the summer, too, more than any other season. Something about summer means hardship for me, although it's still one of my favorite times of year.

When I have gone to visit Dad this summer, I can't help but think each time about all those other summers I remember him in. Strong, swimming for miles, driving the camper, making us walk until our feet fell off. And now I see him, sitting quietly and guardedly in a button-down shirt and sweat pants, something he never, ever wore in his life, but a garment that is easy for the caregivers. I don't know if he even differentiates between the seasons anymore and summer, a season that he once loved and looked forward to, is now just another day in the succession of days he endures. And all I can do is remember for him.

Summer Time.

I went to a barbecue this weekend given by the owner of the house where Dad lives. The family owns two houses, side by side in a relatively nice neighborhood, and every summer they try to give a barbecue for the residents and their families. A lot of the time, people who used to have family members at the houses stop by too; the owner prides himself on the fact that families are welcomed and involved in his houses.

I took a friend of mine, who had last seen Dad about six years ago when I still lived with him and would bring him by the office where I worked to visit with my friends. She was also involved in cleaning out his house with me. She said later that while she had instantly recognized my Dad, he looked and acted a lot differently from the last time she had seen him. If I remembered correctly, he had flirted with her on that occasion; it was pretty certain that there would be no flirting today. He is, of course, much less animated and talkative, and regards the world now with a slightly suspicious look, as if he's not sure what's coming next but he's pretty sure he won't like it.

Like the last time I visited, I tried to engage him as much as I could, and again I noticed that he would stare intently at my face. I can only guess that somewhere in his brain is the correct identification trigger that indicates I am his daughter, but I don't think it's really accessible anymore. He doesn't know who I am anymore, although I do think that he still recognized a relationship to me-I have a feeling that I now fall in the category of people he knows that make him do things he doesn't really want to do.

In any case, he seemed to be in a decent mood, even managing to find and identify his fork and use it to lift bites of food to his mouth. The last time I saw him eat a few weeks ago, he was being fed, so it was heartening to see that at times he could still remember what a fork and food meant. My friend and I sat next to him, eating our plates of salad and steak, just trying to be there for him. Later, I took her on a tour of the houses and she gave her approval. She said it seemed like all of the staff and the owner treated their residents with a great deal of respect and compassion, and that it seemed like the houses were clean and comfortable. Although I do have great faith in Dad's caregivers, to have the positive opinion and take on the situation of someone I trust was deeply comforting.

All in all, it was a good afternoon. We went out and said good bye to Dad as the caregivers were wheeling the residents back into their houses and the family members were saying their goodbyes. I gave Dad a hug and told him I loved him, and then left him to the people who have also become his family.

The Difference.

I was just out of town at my nephew-in-law's graduation in California. We had a great visit, spending time with my fiance's family and enjoying some good sun and good food. In the course of the visit, I found myself spending time with an elderly member of the family; my nephew's ninety-year-old grandmother.

Whenever I meet an older person now, I can't help but compare them to my father. My ninety-four year-old hospice patient is as sharp as a tack. My patient may be old and infirm of body, but has the mind of a forty-year old, understanding current events and able to converse with me about what's going on in the world as well as what happened seventy years ago. It is obvious that the people around my patient still enjoy their company and presence. It was much the same situation with the grandmother.

She moved slowly, suffering from arthritis in her knees and feet, and with the expected aches and pains of a ninety-year-old. She was also quite hard of hearing, but seemed able to manage while in company with a hearing aide. But she was doing just fine mentally, keeping up with all of the conversations she could hear, and aware of what was going on in the world around her. She had a sense of humor and came alive when around the family, laughing and talking. My nephew and his mother obviously appreciated her company and were glad she was still present with them. My father is at least twenty years younger than she is, but he sits at home quietly, saying little and understanding even less, and shuffling slowly when on a walk.

It makes me sad, and it also makes me think angrily that early onset dementia is a horror, one that we still barely understand. Why does Alzheimer's and dementia and LewyBody take one individual and not another, and why sometimes so heart-breakingly early, before a life is even close to being finished. My father has been suffering from the gradual loss of his mind for at least fifteen years now, while these two lovely almost-centenarians continue to maintain their sharp focus. I can only hope that researchers get going quickly on solving these terrible conditions, so that more people can enjoy their loved ones for a much longer time, and don't lose them at such young ages.

Fragile.

We had a meeting with Dad's financial planner this week. We first hired her five years ago when we were just starting to get him and his affairs in order. She was with us through moving all of his money from multiple and confusing accounts; through the move from the house to Assisted Living; and through all the family troubles. She knows my family and how we work pretty well. I meet with her every six months or so to check in on how the investments are going and for her to find out how Dad is. It had actually been more like nine months since I last saw her, and in that time a lot has changed, like moving and the engagement, and Dad's move.

We were getting together so she could meet my fiance, and so she could explain again to both of us where the money was, how things worked, and how it was all doing. When he left the room at one point, she said warmly how much she liked him, which, although not necessary, I appreciated hearing. Since she knows my family so well, it felt a little like an older member of my family was giving her approval. But then we turned to Dad's business.

We took a look at Dad's main retirement account and how everything was organized. She explained that the money was invested according to a fairly high risk strategy-investments are often made on a sliding scale of risk and what people are willing to lose. A younger person would probably invest more aggressively, while a retired person would be more conservative and safe. We had deemed it acceptable, however, because of certain safeguards, to invest aggressively, because with dementia, the sufferer can live for a very long time. Since Dad had always been healthy as a horse, we figured we had a good long time to win and lose. She turned to me and said that now was the time to think about changing that strategy, and asked me how Dad was. And I realized that the answer to that question had changed dramatically in a year.

If she had asked me a year ago, I would have said that Dad was still tough as nails and to keep it high risk. But he's become so frail, suffering from one little infection and illness after another, now I'm not so sure. Gravely, I explained this to her and we looked at each other for a moment, both a little shocked. I told her that Dad was so frail that I honestly couldn't say any more, couldn't call how long it would be before the question of risk was moot. And though I had known this before, of course, it just brought it home to me even more strongly. Dad may not last another year. He may be just too fragile. And though I have had a long time to become accustomed to this, it's still difficult.

Together we decided it was time to reduce the risk and change the investment. I know she was just as sad as I was at the necessity and at the news.

Recognition.

I have commented before on the most popular question people ask me about my father's dementia. "Does he still recognize you?" is the standard query that everybody has; the unimaginable possibility that everyone seems to think about and fear. It's as if the symptoms of dementia have been boiled down and condensed into one easy-to-understand, if hard-to-experience event. Forget wandering and hoarding, blanking on words and memories, taking the car keys away; this is the only symptom of note-the most difficult.

Funnily enough, it isn't the hardest for me. I don't honestly know whether my dad recognizes me anymore. I haven't heard him say my name in months, maybe a year or more. I think he knows there's some connection between us, but whether he knows precisely what that is, what role I play in his life, I have no clue. When we took him for a drive we kept studying my face intently, I don't know why. I kept taking off my sunglasses and smiling at him in case he was trying to see and place my face in what remains of his mind. When I smiled at him, he didn't really smile back or respond in any way, but I noticed he kept looking at me. I think perhaps, he doesn't know me anymore, and I've had time to come to grips with that.

No, what really bothers me about the dementia isn't my father forgetting who I am. It's the loss of dignity for what was a proud, reserved, principled man. It's seeing that he's wearing a diaper full time now, and knowing that someone must always help him in the bathroom; and knowing how very much he would hate that. It's seeing doctors push and pull him around and examine him without his having any idea of what's going on, or why he must endure this. It's knowing that years ago, he could have fixed every single element in the Corvair engine we showed him, and could have explained exactly why it worked as he was doing it. It's watching my once strong, athletic father shuffle carefully along with help from his caregiver.

These are the things that really bother me. So he doesn't remember me any more. Yes, that's very, very hard and very sad. It's the complete loss of dignity, though, that really bothers me, and which is, to me, the ultimate and most difficult, symptom of dementia.

So Many of Us.

I just found a group on Facebook composed of more than 700 people, all having been touched in some way by dementia or Alzheimer's. First of all, let me say that while I see what an amazing tool Facebook can be; dear god, I can't be the only one who finds it an eternal mystery am I? Anyway, I've only been in communication with this group for two days of so but its been long enough to experience how lovely, generous, and welcoming they are. Its also been long enough to see yet again just how many of us are affected by these terrible diseases.

It's evident that several of the members are themselves suffering from dementia of some sort. I can only honor the bravery of these people who are feeling their very selves retreat and be destroyed before dementia; they are still managing to get the message out as much as possible and tell the world what this horrible experience is like. I can't imagine that sort of courage.

And then there's the day to day courage of all the unpaid caregivers who are caring for their loved ones; who have chosen to give up money, free time, and many other things in order to do a thankless job that can be filled with nasty surprises and heartache. I guess they live for that one moment of grace when a loved one remembers them or laughs with them. Although I don't see my Dad every day, I know how wonderful that moment can feel.

I'm the only one in my social or family circle who has a loved one with dementia, and it can be hard not to have that person who knows exactly what I'm talking about or feeling. (I do thankfully have my lovely fiance, who knows something of what its all about.) So it's kind of a treat to find this great group full of people who get it. Thank you to all of you who have welcomed me so warmly and who understand so well.

Corvairs and Conversation II.

So we continued on, Paul driving and asking the occasional question of Dad, me crammed in the back, trying to interact with Dad while simultaneously fearing a repeat of the vomit incident, and Dad, sitting stiffly upright, looking forward out the windshield. We journeyed down to Marymoor Park and drove all the way around, stopping from time to time to look at something but never getting Dad out. Frankly, we were afraid we wouldn't be able to get him back in the car!

It was a little sad for me to be at that particular park with Dad, since we had spent many summer weekends there as a family when I was little. I remembered biking along the bike paths with my family, eating picnics on the sunny fields, and taking walks through the park. I even got married for the first time at the park; a day that Dad was able to fully share, since the dementia hadn't yet struck him. It was a little bit of a bittersweet visit.

But, having made a loop of the park, it was time to turn around and take him back up the hill to his home and what is now the reality of his existence. We pulled in to the driveway of the house and I crawled out of the back seat and hurried over to open his door. He was already starting to try to get out of his seat belt but having trouble. It was heartening, in a way, that he recognized his new home enough to know it was time to get out. His caregiver came out and eased him out of the car and took him back inside, and it was time for us to head back to the city. I have no idea how much of the car he recognized, whether he remembered owning one, or even knew what the heck we were talking about. Probably to him, he was riding in just another vehicle. I think he at least enjoyed the company. But it occurs to me that we don't do these things for our dementia-struck loved ones, we do them for ourselves, to make ourselves feel better, and to touch, if we can, what used to be our loved ones.

Corvairs and Conversation.

I think I've mentioned before how mechanical my Dad was and how much he loved cars. He could fix absolutely anything that went wrong in a car, even something like a cracked block had no chance against his mind and talented hands. He had several classic cars when I was very little, the last one I can even vaguely remember was a Corvette, but I have pictures of other classic Corvettes and Corvairs that Dad loved. Yesterday, my fiance and I took Dad for a ride in our classic car, a 1965 Corvair.

It was a beautiful sunny day, even hot, as we pulled into the driveway of Dad's AFH. We went inside and found him dozing on the couch, but when woken, he seemed to be having one of his good days. I think he was happy to see us. We dragged him up off the couch with the help of his caregiver and headed outside. He's looking good after the stresses of the surgeries, but I was still surprised and a little sad to see how slowly he's walking now, how carefully he places his feet, almost shuffling along.

Outside, we showed him the car. My fiance even opened the hood to show him the engine, something he would have paid rapt attention to in the past. It seemed hard to keep his attention now, we would point something out and he would pay attention for a second, then start looking at something else. His mind has really traveled far away into the disease.

His caregiver eased him into the car and we were off, rumbling down the quiet neighborhood street in the warm sunshine. My fiance, who is a wonderful person, would talk to him, mentioning things about the car or asking him about cars or experiences he had had, even though most of the time we waited in vain for a response. We were able to get a few comments on things, though, and it seemed like he was enjoying being in the seat of a car he had once loved. It was really nice to see him there. TBC

Visits.

I have a new hospice patient who I already really like. This patient is quite elderly, but still really sharp and lucid. I'm not supposed to mention that I am specifically a hospice volunteer, but I wonder if he knows I'm here because they judged him to be within six months of death. Is it a hard thing I wonder to be so close and know it intimately? Most of us spend so much time in denial of death, I wonder what it's like not to be?

My patient is full of wonderful stories, fascinating stories even, all about what Seattle was like at the turn of the century and all the things my patient could remember about living here back then. Service in a World War, marriage and children, what the city looked like before the sprawl and the Viaduct. I could sit and listen to this person for hours, and I think they are glad of my company and the chance to talk.

Coming in and out of the facility, I see all the other residents who are sitting around or walking up and down the corridors, trying to stay busy. I would imagine that not a lot of these people get visitors, yet I bet they have lots of fascinating stories, too. Stories that lie within these people and don't get told. I just feel for these elderly citizens who no longer have visitors with those all important ears to hear their stories. Even someone just to visit and exchange a smile with. It's just a shame, that's all, that these people brave people who lived and worked and built this country are sitting, forgotten, in facilities all over the country.

Inspections.

I got a call the other day from a state worker who had just been visiting the Adult Family Home where my Dad lives. He apparently visits the house regularly to make sure that I’s are dotted and t’s are crossed in all the charts and paperwork that need to be filled out and managed. Every single thing that residents do has to be recorded and set down in a chart, including the care plans that the state mandates are updated every quarter.
The inspector had several questions for me about how I found the care to be at the house, whether I thought Dad was being taken care of properly, and whether I thought the owners were doing a good job. I told him that from everything I had seen, the house seemed like a very competent, comfortable place that was taking good care of my Dad. He seemed satisfied. After I hung up, however, I had an attack of the apprehension that I feel on a regular basis.

There was no way I could care for Dad on my own, my chronic condition alone makes it impossible. So I had to relegate his care to someone else, a facility that seemed clean and well-managed to me, and caregivers that seemed caring and competent. But it doesn’t stop me from feeling fear. How do I really know?

I don’t live with these people, I don’t see Dad on a daily basis, and I have no closed-circuit cameras making sure that everything is going fine. They have those for parents now to check in on their kids-I wonder whether its only a matter of time that we have them for our elderly! And I hear so many horror stories. People who know I have a parent in care seem to delight in telling me the latest terrible news about a facility doing terrible things to its residents. I have to trust in others and hope that a state inspector will catch any problem. That sometimes seems like a thin basis on which to establish trust, but I had to trust someone. And I’m grateful that the state sends out inspectors who actually do their jobs.

To all those people who wonder if they did the right thing by putting their parent or loved one in dare, I’m with you-I feel your fear and apprehension. Try to forget the horror stories and rely on your instincts in picking a place. Chances are very good that you’ll find a place where the people will love and care for your loved one but it’s still a hard thing to trust in.

Realities.

I just finished a really great book, sort of a memoir, written by a psychologist who visits the elderly in nursing homes, assessing their mental states. The book, Nasty, Brutish, and Long, written by Ira Rosofsky, is fascinating, detailing not only his experiences with the elderly, ill, and dying, but his personal experiences with his own father residing in a nursing home. What he has to say both gives me hope and makes me fear for all of us.

Strangely enough, it was a little like reading my own book. We wrote very similarly, at least to me, and a few of his observations or experiences matched mine! We both wrote about how amused we were at the euphemistic names given to dementia wards; flowery, nurturing names that don't refer at all to what actually goes on in the buildings they name. My experiences, fortunately, are with the more upscale facilities, and he describes so many incidents in which families are forced to put their family members in cheaper, less-staffed facilities and spend their assets down to qualify for Medicaid. What kind of country are we living in where our elderly are forced into these less than ideal situations, and their families are forced to make terrible choices?

He also talks about the pharmaceutical companies and how they are practically minting money at these facilities, since the average elderly person is taking up to ten different prescriptions a day! The American people, through Medicare and Medicaid, and private families are paying for the drug companies to get rich. It's disturbing. And I haven't even started on the staffing! TBC

World Events

So much has been going on in the world lately, its hard to take in. It's made me think of all the things that have happened in the world since Dad stopped being aware of it. I remember years ago when I lived with him, I took him to vote in a presidential election. I knew it would be his last time voting, although I'm sure he wasn't thinking that. I want to say it was one of George Bush's elections, and as Dad was a life-long Republican, I'm certain he voted for Bush. I didn't look at his ballot at the time, but the election officials didn't seem to mind that I helped him to the booth and gave him a little advice on voting. Remembering this makes me a little sad now-it was the last time he performed a task I'm sure he took very seriously. The last time he was involved in the world.

Since then we've had 9/11, and the Afghan War, and the Iraq War, and The War on Terrorism...Yikes. And now, Osama Bin Laden has been hunted down and killed. And my father has no idea who Bin Laden is nor why it's so important to us as a country that he was found and killed. I don't even think he was aware at the time of 9/11 what was happening. These are all events he would have been interested in and thinking about; they would have been important to him. I don't know what fills his mind these days, but it's not these incredible current events. And how sad is that? I find it terribly sad.

What's even sadder is how many other families share this sadness. Our lives have continued, we've continued to be delighted and saddened and horrified about the world and what is going on around us. But the lives of our loved ones who have dementia have essentially stopped short. They will never move past the last event they're able to remember. In fact, they've started going backward, and are delving back into memories of big events that happened years and years ago. I guess the one thing I'm thankful for is that Dad was spared the anger and heartache we've all lived through these last years. It is sad, however, that he can't participate in the joy now being shared throughout a country he loved and always participated in.

Differences.

I enjoyed visiting my hospice patient, but she has just 'graduated' from hospice care. There are two ways to leave hospice care, get better or reach the end. So far, more of my patients have gotten better than died, but you have to be prepared for anything. In my trips to see those various patients, I've been quite interested to note both the differences in the places where the elderly are being placed, and the people surrounding them.

I've found there are as many different family homes and assisted living facilities as leaves on a tree, even though they fall under a particular heading. Some are bustling and lively, some are luxurious, some are homely, some are dingy and worn-out, some just seem like a hospital. I think its the last that I dislike the most. When I was looking for a place for Dad, there were several facilities that just might as well have called themselves hospitals, that's what they looked like. Only the barest effort was made to make them seem at all homelike. I avoided those places like the plague, and fortunately I could, as Dad had enough money to be able to pick and choose his home. I feel for all those people who have no choice but to place their parents in a cheaper, hospital-like facility.

The last place I visited was quite luxurious-like many, it combined regular assisted and retirement living with a wing for those with memory issues. There was a deluxe dining room, a chapel, a spa and a library-it was obviously the kind of place that needed money, and probably a long waiting list to get into. The memory wing was only one floor, comfortable appointed like the rest of the floors, but obviously prepared for heavy-duty use. No matter how expensive, it's still a locked ward-luckily it just doesn't smell like a hospital.

I just find it interesting, the growing number of places we're opening as places to put those no longer functioning as members of society. There are probably more adult family homes in your own neighborhood than you're even aware of. And I find it interesting what money will buy. I'm lucky I could pick and choose for Dad and not everyone can do that. Is there a way to make it more fair, I wonder, to homogenize these homes so everyone experiences the same comforts and care? And would we want to if we could?

The more things change...

I have a new hospice patient, and I am really enjoying visiting and spending time with her. She has dementia, but its not too far advanced yet, so she's still pretty engaged. We are able to have fairly long conversations, even though much of the subject matter doesn't always make sense. Talking to her reminds me of talking to Dad, back when his illness hadn't progressed to where it is now, and I feel a little sad.

I've noticed many of the same verbal tics and ways to cover up mistakes or forgotten information that Dad used to use. He got really good at covering up, and would use certain open-ended or vague phrases that very carefully obscured the fact that he didn't know what I had asked or what I was talking about. There were times when I found it infuriating, even though I could guess how hard it must have been for him to not have that information available to him anymore. My new patient has a few stock phrases, too, and I feel so sorry for her because I know where this is going for her. It's only going to get worse.

My Dad wasn't a big talker anyway; we spent long stretches of time quietly together. But there were times when he felt a little loquacious and chatty, times when he actively wanted to engage with me. I always tried to make him feel listened to, and as if he had been engaged in a full, satisfying conversation where his opinion mattered and he was heard. It was one thing I was really good at with him.

He can't really do that anymore-he's gone past the stage of engaging. Spending time with this lady makes me feel like I've got a little bit of him back again-it feels familiar because of the way she talks, so similarly to Dad. It does make me sad that she will eventually reach the stage where Dad is now, but until then, I'll keep trying to make her feel like her words matter, just like I did with Dad.

Stuff.

I really like watching shows like American Pickers, and Storage Wars, and similar. As much as I enjoy seeing all the neat old items and antiques found by the guys on American Pickers, the thing I can't stop thinking is, "Who's going to clean up all that stuff when the homeowner is gone?"

When I started cleaning out my Dad's house, the story that provides the structure to my book, I was weighed down by the sheer scope of the project. There was garbage and paper and furniture and clothes and tools and tons of other stuff (nothing valuable like on Pawn Stars, however!). It was daunting and it took my six months to finish. I know I'm not the only one to have to face this kind of project. Three out of eight people in a writing class I took had already had to clean out one house. It was incredible. My mother-in-law, having just finished my book, told me she had cleaned out four houses in her time!
At what point do we stop acquiring stuff, and encourage our parents to stop acquiring stuff, and in fact, start getting rid of it?

Every time I describe my father's house, I see a peculiar expression cross the face of the person I'm talking to. They usually then start thinking about THEIR parent's houses, and I can see them going from room to room in their minds, looking at the sheer amount of material it will fall to them to clean out. It really made me start looking at MY stuff, and it started me cleaning my closets and rooms out more regularly. I won't be having any kids, but I don't want to leave a bunch of crap for some poor random person to have to clean out.

Interesting Article

I found an article that caught my eye while poking around on Yahoo! It discusses pretty basic stuff that many of us already know, or already did, but its still good information!

http://shine.yahoo.com/channel/parenting/when-you-parent-your-parents-2408321/

(Plus the title of the article is the same as one of the chapters in my book so it really caught my eye!)

Being sick.

Well, I'm sick. I have a cold that I'm just starting to come out of and its really knocked me for a loop. It's been so long since I was sick that I forgot how truly bad I can be at it. Some people are good patients, they take care of themselves and wait to get over it, but I'm not quite like that. Largely due to my religious upbringing, being sick brings up some hard emotions.

I love my Dad but this is the main thing I resent him for. We were raised Christian Scientist, and the main focus of that religion is that there is no illness or dysfunction. We are a perfect reflection of God and therefore have been tricked into believing we're sick. When we were sick as kids, my Dad didn't want to know about it and encouraged us to pray to get better, making us feel guilty if we weren't able to achieve wellness through prayer. In my book, I've gone through the trouble this has caused me over the years-its the central irony behind his illness and my taking care of him, even though he never took care of me when I was suffering from my big illness. In addition, I've had other loved people leave me because of illness, so part of me is always expecting that to happen, as well.

We all have things that our parents did to us, or ways we feel they neglected or hurt us. It's hard to remember that when we look at them now in the throes of their dementia. Or for some, it may be all they remember as they go about caring for the person who didn't necessarily care for them. All across the country, there are people caring for ill parents who didn't care for them and they are encouraged by society to keep doing so while not mentioning the hard feelings that might be bringing up. I want to tell all those people that you're not alone. I love my Dad and I forgive him (mostly) for the ways that he hurt me-and I'll continue to care for him. But that doesn't mean I should forget and squash down those feelings of hurt and resentment, and neither should anyone else. And I'll continue to get better at being sick.

Guilt.

I've been reading some of my favorite blogs this week, trying to find more, and just seeing what's going on with my fellow caregivers. There's one blog I particularly like, listed on my blog list, by two sisters who are caring for their father. They just sound like lovely women, who love their father very much, and there was one recent post that caught my eye.

One of the women was writing about how their father was spending much more time, either at a facility or adult daycare, I'm not sure. The point was, much of the time previously taken up with caring for her father she now had free and she was having mixed feelings about it. She detailed the feelings of guilt and shame at not being with her father so much, and even mentioned how worried she was about what other people would think of her for "ditching" her father. I just wanted to cry, I felt so bad for her, and I wanted to reach through the screen to tell her to stop.

I remember those feelings of guilt and shame so well; was I doing this right? Would people think I was a bad daughter for not spending more time with Dad? Was it wrong to want a few hours to myself? And, of course, the big one, would people think I was a bad person for putting Dad in an assisted living facility? I still feel guilty feelings for putting boundaries on how much I can do with and for Dad due to my health issues. I still wonder whether the people at Dad's home judge me for not spending more time with him.

My good friend would ask me who I was talking about when I said "people" or "they". And she would point out that only I knew what could be best for Dad, and for me. She also pointed out that most people who knew me thought only of the good I was doing for Dad, and how much he must appreciate it. Where does this belief come from that we have to give up so much of ourselves, that we have to work for another until we're exhausted, and feel guilty for wanting to live our own lives? I want to know where-and how do we get rid of it?

Unfortunately, these feelings will never completely go away, and I've done a lot of healing work to be able to turn the volume down on them. Now, whenever I hear another caregiver saying how guilty or ashamed they feel for wanting some time to themselves, I take them by the shoulders(if I happen to physically be with them) and tell them to stop! I point out all the wonderful things they are doing, and that there is no way possible to take care of anything or anybody if we haven't taken care of ourselves first! You HAVE to put yourself first, otherwise there will eventually be nothing left of you to help others; plus, you were given a life that's just as important as that of your charge. You deserve to live it, and don't forget it! Let's all remind each other of that as much as possible.

Would they be proud 2?

Its kind of funny how my Dad's life and mine has become intertwined. I can tell Dad now that I've written a book and he will look briefly interested and probably say something like, "Oh yeah? That's nice."-provided he feels like saying anything at all. But it won't have the impact on him that it would have, and that's a little sad. What's also terribly sad and heartbreaking is the number of people in the same situation.

Having just had the book debut, I've been looking through Amazon's choices for books on dementia and LewyBody and caregiving and all that. What started to shock me was the sheer number of books written by ordinary people about their loved ones with dementia. Obviously, I'm not the only one who felt she had a story to share. Books written by adult children of ill parents, books written by spouses, book written by those stricken by dementia themselves! It's a little shocking to tell the truth, and that's before you even consider the number of blogs out there, written by people just trying to get through the day, in the grip of this terrible disease, dementia.

And we're all just out there in the great silence, spinning our stories, sending little flares up about how our lives are affected by this thing. To read how some people are dealing day to day is inspiring and awful. This disease, almost more than any other, affects families and loved ones almost as much as the afflicted. The stories are never exactly the same, but they are close enough to give comfort. For a while, my life wasn't as affected Dad's life as it was a few years ago when the events of the book took place, although that's beginning to change again and things are heating back up. I guess we all have no choice but to keep going day to day, keep writing our blogs and our books and hoping that the hardships we've experienced aren't for nothing - that maybe by telling them, someone else will be helped.

Would they be proud?

This last weekend was full of excitement about my book coming out, how it looked, how to begin marketing, etc. This project has been in the works, from writing it to publishing it, for about four years. Then my fiance asked me whether I thought my parents would be proud of me for writing and publishing a book, and I had to stop and think for a moment.

It's been so long since my mother was alive that I no longer really know how she would think or feel now. I think that at one time, she nurtured dreams of writing a book, herself. I suspect if she thought anybody would write a book, it would be my sister! She has always been known as the writer of the family. I have to think she would be proud of me, though, for having set out to achieve something and finishing it. What's interesting about all of this, though, is that if she had remained alive, all of the things I've written about probably wouldn't have happened.

I've often thought that the reason my Dad's brain and consciousness started to deteriorate was due to her early death. He began to develop symptoms about six years after her death and it slowly progressed from there. They were pretty much each other's social circle, largely keeping to themselves, without too much interaction with friends. It begs the question, if she had remained alive, would Dad have developed dementia at all? Or if he had, what path would it have followed? There are events in , too, that are intertwined with my father's, that I suspect wouldn't have occurred, either.
It's just interesting, and a little sad to ponder what would have happened if Dad had still developed dementia, but my mother had been there to care for him, and not me.

It's here!!

Well, as you can see if you look to the right of the posts-my book is here! I'm so very, very excited! It's taken me three years to get it to this point; and, of course, the whole thing started eight years ago. I've read the book now too many times to be objective. All I can hope is that it's an interesting read, and it brings you some information or comfort you didn't have before.

If you click on the cover image, you will be taken directly to the Createspace site where the book can be purchased. It will also be available on Amazon in a week or two if you prefer to buy it through them. I might change the picture link to Amazon once the book has listed there.

Please don't hesitate to give me your feedback on the book, I'd love to hear what you think, and don't worry, I'm going to keep up with the blog as I'm sure there will always be more stories! My thanks go out to everyone who helped me or continues to help me on this journey.

Staying here.

As I posted a few months ago, I got engaged in January and am very excited to get married. As people who are soon to completely share their lives must do, we've talked about what we want to do and achieve, where we want to live, what our dreams are-all that stuff. Luckily, our dreams for the future coiincide in many ways. The one place they didn't, however, was the possibility of having to move in order to help my fiance achieve a long-time dream.

He wants to get an advanced degree in his field of interest, which is unique enough that there are few colleges that offer it. Before he met me, his intention had been to get accepted to a college on the east coast, move there, and start a new life. We have talked about the possibility of moving in order for him to achieve this, and I would be willing to do it, even though I don't really want to leave the area. The problem is, my father, and who would do what I do for him?

I year or so ago, I would have had no problem leaving but now Dad's health has become so fragile, that it appears he needs a family member in addition to his caregiver. I knew this would be a long-term job when I took it on, however, I didn't really expect to get married and possibly have to move. In all our conversations, my fiance and I both agree that this is a big issue and a big deterrent to moving. The last thing I want is for my father to be responsible for us not living our lives and my fiance achieving his dreams-I would really resent my Dad then!

It appears that we have some other options now to achieve what we both want to achieve, and the possibility of moving has become more remote. But it still remains in the back of my mind. The one huge reason why there are certain things I can't do, at least until Dad is no longer with us, and I have to admit I feel a certain resentment about it.

Last appointment cont.

I'm sure the caregiver thought I was angry at him since my face was set in irritation and anger. He started apologizing again as I approached them and I tried to quickly put him at ease, explaining my ire was reserved for the idiot nurses who couldn't manage to come up with some paper towels. I took another good look at Dad and the inside of the care, and headed back into the hospital, telling the caregiver I was going to get paper towels. At the first restroom I saw, I started yanking papertowels out of the dispenser, creating quite a nice pile that I then took back to the car. Using only one towel and a trash bag, the caregiver had managed to get Dad out of his jacket, which took the brunt of the explosion, and cleaned him off fairly well. Dad was still shivering and looking decidedly stressed out, so we planted him into a wheelchair and I took off for the warm interior of the hospital while the caregiver turned to his noxious car.

As I pushed Dad through the corriders I kept repeating how sorry I was, how after this appointment we were never bringing him back here if we could help it, and trying to cheer him up a little. I think I actually achieved it as he seemed a little more calm and curious by the time we got to the doctor's office. Sitting there, waiting to be called in, I again assured Dad that this was it for doctor's visits. I have no idea whether he understood, but I hope so and I hope it relieved his stress.

We hurried the doctors through their inspection of the surgical site, pleading Dad's stress and discomfort. I must make a note that smelling of vomit is one way to get medical personnel to attend to you more quickly! We finished up the visit and began to wheel Dad back out of the office. As he and the caregiver got into the elevator for the trip down to their fragrant car, I walked the other way to the main parking lot, limping from the speed walking I'd had to do earlier. I felt sorry for Dad, for all the stress and trouble, knowing that this very well could have been his way of expressing his displeasure and discomfort at all of these prying and prodding visits. I'm going to keep my promise to him as best I can, and honor his beliefs as well as I can. There will be no more doctor visits unless he's in terrible discomfort of pain, because the doctor's visits themselves are causing more pain and trouble than any problem he's had.

Last Appointment.

Well, we had a surgical follow-up appointment last week to make sure my Dad's hernia surgery is healing well. I had already decided that after this visit there would be no more doctor visits except under the most extreme conditions. Unfortunately, there was no way to inform my father of this and on the way to the follow-up he staged a protest of sorts.

I had reached the surgery center ten minutes early and, not seeing my dad or the caregiver, I stood at the desk. My cell phone started ringing and as I pulled it out of my purse, I could see it was dad's caregiver. I answered, thinking perhaps they were late, only to hear that they were actually at the front, but Dad had been sick all over the caregiver's car just minutes before pulling into the parking lot. As I felt my mouth set in displeasure at the whole situation, he asked if I could find some gloves and towels or something else to clean it up. I told him I would do what I could and hung up.

Now I don't know if I just caught the nurses at a bad time, or maybe they've never really experienced anyone vomiting anywhere but neatly into a sink in the doctor's office, although I can hardly believe that, but they were incredibly slow in acquiring something for me to clean Dad! I waited, fuming, for fifteen minutes while they puttered around and went back and forth and finally they gave me two towels, one damp, and a small plastic baggie in case he was sick again. (!)This seemed like an incredibly inadequate response and I was a little perturbed by the lack of real material but I left and moved as quickly as I could through the corridors to the front door. As I came out of the automatic doors, my eyes began to scan for the white SUV and I finally saw it a ways down the driveway. As I hurried up, I could see what a terrible mess it was-my poor father sitting literally in pools of his own vomit. I'm not good with vomit at the best of times, and this was one of the worst things I'd ever seen. The caregiver would be lucky if he ever got the smell out of his car.
TBD

Enough.

I have a new hospice patient who I visited the other day. She was being taken care of at home by her daughter, who was her primary caregiver. It was an older house, in one of Seattle's neighborhoods that is slowly being taken over by wealthy, young families, although there are still a few older holdouts who you know have been there since they started their families. It looked like it had been a lovely house at one time, but there hadn't been the time and money lately to take care of it. Wallpaper in patterns not seen since the sixties peeled slightly from the walls. The ceiling showed several large water stains and some crumbling and curtains and blinds were old and dusty. For all that, however, the room where my patient lay on her hospital bed was clean and cozy, and as many things that would add to the comfort of the patient were grouped around the bed.

The patient's daughter let me in and gave me a hug, even though we had only just met. She was confused at first about my purpose, trying to make me comfortable, or fetch me a coffee, or entertain me. I assured her repeatedly that I was there for her, there to help her and give her a little respite from the 24-hour care. And I could tell that even though I saw pictures of a man I took to be her brother, that she was it, she was the one on the front lines with her mother, there all the time. And she was so lovely with her mother, talking to her, asking if she needed anything, stroking her head gently. It was a lesson to me again about care and compassion.

And as I sat there next to the hospital bed, keeping the patient company quietly, looking around the room, I took in all the evidence of little money. A run down house, no in-home care, old fixtures and furnishings. I gave thanks fervently yet again for the fact that Dad had plenty of money and we could afford, not only to get him top-notch care, but also to be, in a sense, removed from the situation. We have enough and more than enough to do everything that Dad's illness requires.

I was able to get Dad in-home, 24-hour care so he could stay in his home, and was now able to pay someone to perform 24-hour care now. I'm so grateful-it could have just as easily been me performing the feats this woman was performing for her mother. It could just have easily been me on the front line, in a crumbling house, responsible first-hand for care, instead of at a remove. It made me admire this daughter, and all others like her, who could do first-hand with such love and compassion what I could only do remotely.

Pain

There's a great new article in last week's Time magazine about understanding pain. Every year it seems like one of these news magazines does a healthcare issue that focuses on pain and pain meds. This one was very good and I encourage everyone to go out and find a copy.

More and more Americans are suffering from chronic pain due to such conditions as Arthritis, Rheumatoid Arthritis, Fibromyalgia, unhealed injuries, etc. There is even a diagnosis now of Chronic Pain, with an unidentified cause. Doctors are pretty good at relieving pain immediately after an injury or surgery, but chronic pain often completely stumps them. Personally, I think its only recently that doctors have been forced to reluctantly admit that there is a huge pain problem suffered by people that is not just in their heads, and is not just people drug-seeking.

I have Rheumatoid Arthritis, a chronic condition I have dealt with since college. I am in various degrees of pain literally all the time. And yet, at times, it has proved from challenging to impossible to get the appropriate pain meds. It is getting even more difficult now because government agencies, in an effort to crack down on drug abuse, have started persecuting physicians who prescribe pain meds to patients. I asked my physician the other day for a stronger prescription due to increasing pain and he refused-directly because of new government oversight. He's becoming paranoid. I've become appalled; what are the millions of pain sufferers supposed to do? Our lives are becoming impossible because of drug abusers and paranoid doctors.

I can only be apprehensive about how this might affect both my and my father's futures. I've already had to struggle to get a prescription for my father for very legitimate pain. Will it only get more difficult for even the elderly to get the medications they need? I'm also a hospice worker-the stated goal of hospice is to make dying patients as comfortable as possible, especially by giving them as much, and more, humane pain medication as needed. Will hospice programs begin to struggle due to the government's inaccurate and ineffective war on drugs? While I think its tremendous that pain is being studied and acknowledged as a disease in its own right, I can only be apprehensive for the future of those people who suffer from pain and have a legitimate need for the medications that relieve it.

Enough is enough.

According to his caregiver, Dad is doing well. It's going slow and they're taking it day by day but his immune system is definitely taking longer to heal him than it used to. He has a follow up appointment to the surgery in a few weeks but I've decided to cancel all other doctor appointments, at least for now. I feel like he's just had enough poking and prodding in his personal areas for a while.

When they were preparing Dad for surgery, I could see in his face how puzzled he was to have all these people around him, doing things to him. But he seemed prepared to be patient and put up with it. But when he was in recovery, he seemed wholly miserable. After several hours of him lying in the hospital bed, not seeming to pull out of the anesthesia, we tried to get him walking around to see if we could get him to wake up and get going. It took his caregiver and the nurse to walk him around, and they had to manhandle him out of bed and around the recovery room. Watching the expressions on his face, I could see the anger and disgust at what was being done to him. I decided right then that it was time to take a break from the doctors.

He was supposed to go to the urologist to see if there's any physical reason(other than the dementia, of course) but I think that can wait for now. Personally, I think he's incontinent just because he's given up. But, its not urgent and I think we can decide later if we want to take him to get checked out. I continue to remember that if he was lucid, he would never have done any of the procedures he's had lately. His religious beliefs would have meant ignoring any symptoms and trying to heal himself through prayer. He would never even have gone to the doctor.

So for now, I'm going to try my hardest to respect beliefs that he adhered to all his life, and that he would continue to adhere to if he were able. I'm going to respect beliefs that I think are completely wrong and that lead to a lot of personal pain and suffering because I think its the right thing to do for his peace of mind and for mine.

Consequences.

I can't believe its been a week since Dad's surgery already. He appears to be doing just fine, with no ill effects from the procedure, unlike the last time. I am supremely grateful for this-no more trips to the ER because of excessive pain. I'm guessing that the caregiver is actually using all of the pain meds as directed by me.

I was surprised, however, at how I felt after the procedure. My book, of course, has not yet come out but a major part of my story has been how it felt to take care of Dad and deal with his medical issues when he never lifted a finger to help me with mine. As I explained, Dad is a Christian Scientist, and he does not believe in the efficacy of medical intervention, nor does he believe that a body which is a reflection of God, can truly get sick. I don't subscribe to these beliefs, but I was raised with them, and as a child, was not encouraged to show illness or report symptoms, something that has left a lasting legacy in my body. When I came down with a serious chronic condition as a young woman, I had no idea how to take care of it and didn't seek medical help until a lot of damage had been done to my body. During this time, I lived with Dad, and he, because of his beliefs or for other reasons, never acted to help me, even though I was seriously ill.

In my book, I cover how hard it was to step in and take over organizing Dad's life, and my feelings that he was bowing out of life and leaving me to clean up the mess. But I also discuss how very hard it was and is to help him deal with the medical problem and go to the doctor. In essence, it makes me angry on levels I'm not always aware of to have to care for a parent who didn't care for me. The story is bigger than this, of course, and I do love my father and want to care for him. But I know I can't be the only one whose parents weren't always as caring or present for us as we could have wanted. For all those people who have had trouble admitting that at times they feel anger towards their parent with dementia, I'm right there with you, and I understand. It's not all love and light, sometimes its about doing something you have a problem with because you know its the right thing to do.

What an Experience...

Well, we've gotten through the surgery, although not without issues. The surgery itself went well and Dad came through just fine. But am I wrong in how surprised I am at how dementia seems to throw most medical practitioners. Its like they've never run across it before and don't know quite how to fit it in their little procedures and rules.

Every medical person who entered the room where Dad was being prepared for surgery seemed not to know about his dementia, addressing him each time as if he could respond to their questions. They would then turn to me when nothing was forthcoming and I would have to repeat that he had dementia and that I would be answering any questions FOR him. How is it possible that something that is becoming so common is such a mystery to doctors? And I really hate having to say over and over again that Dad has dementia right in front of him! I don't know how much he understands but can't imagine it helps to hear over and over again. Why his overall diagnosis not written clearly on his chart is what I'd like to know.

It left me with the desire to open or help open a clinic staffed only with doctors who understand or have some experience with dementia. Not dementia specialist but regular doctors and surgeons, podiatrists, internal medicine, etc., that know how to deal with those with dementia. I know, I know, its a pipe dream but it seems like a good idea to me.
TBC

Sick of It 2.

Dad had been seated in the exam chair for most of his appointment. The doctor decided he needed an EKG, so he brought in his little cart, grabbed his paper full of recording electrodes, and began sticking them all over Dad's chest. He connected the many leads, one to a sticker, then activated his machine to take a reading. As it turned out, he had to do two, so Dad had to sit there, wired up, for a little bit longer. I could see his hands picking at the stickers, not knowing what they were.

At this point, the doctor told us we were headed to the lab, so Dad's caregiver eased him out of the exam chair and manuvered him over to the waiting wheelchair. It seems that Dad had had enough, however, and he refused to bend his legs and sit down. The caregiver patiently tried over and over, trying to get Dad to grab the chair behind him and sit down, sometimes pushing him gently on the chest. Like a child who becomes completely rigid so he doesn't have to get into his high chair, Dad pulled his own brand of rigidity and rebellion, refusing to sit down. The caregiver and I looked at each other, shrugged, and decided to let Dad walk a ways. I grabbed the wheelchair, the caregiver grabbed Dad and away we went. Eventually, we stopped again, and Dad acquiesced to being in the chair, letting us wheel him away.
I couldn't help but applaud him for his refusal to play along. He doesn't have the words anymore to express displeasure and refusal. People make him do things all the time. Using his body, the only means he has left, he made it very clear that he wasn't having it, and it was up to us to listen to his silent language.

Sick of It.

Well, we're one more doctor's visit down, which is a good thing. I feel so bad for my poor Father, however. I can tell he's getting utterly sick of being taken to the hospital, poked, prodded, undressed, dressed, and just generally forced to do things he doesn't particularly want to do. I'm beginning to think he actually recognizes the surgical clinic since his face gets a little tense when we get there. He did seem happy to see me when his caregiver rolled him up to where I was sitting. Just about the only benefit of all of this is the fact that we're seeing more of each other, so I think his memory of me is being jogged a little more often.

I caught an expression on his face this afternoon, as the doctor was listening to his heart. It was an expression that I instantly recognized from my childhood. It's a small expression, but I know it so well. A twist of the lips, followed by a tightening of the whole mouth, and a slightly impatient look in the eyes; it's his look when he's a little disgusted with something or he doesn't approve of what's happening. He used to use it on me all the time. I don't blame him in this instance, however. I'd be a little disgusted, too.

At the last minute, the doctor gave us a lab sheet and told us we needed to take Dad to get a blood draw. We had already been in the clinic for an hour and a half(for a 10 minute exam) and were exasperated at having to stay, but we had to do it. As we tried to put Dad back together and get him back in the wheelchair for the trip to the lab, he protested in the only way he had left. TBC

Surgery

The surgery for Dad's hernias is rapidly approaching and I'm a little weary. This is one of my first forays into the world of outpatient surgery but already I don't much like what I see. We were able to schedule a day for the surgery, but for some reason known only to themselves, they were unable to tell me the time of the procedure. They will call me the day before and tell me whether its morning or afternoon. I'm hoping it isn't morning as Dad doesn't do that well in the morning, although, considering he won't have eaten since the night before, maybe morning would be better.

Another annoying thing was the need to schedule a pre-anesthesia appointment. I don't know what they are going to do exactly to test his capacity to handle anesthesia but I don't know why they couldn't do it at the first appointment. It just means dragging poor Dad out to yet another appointment, although I think he actually enjoys being out in the car. Either way, lots of appointments.

We've been lucky so far not to have to do all of this medical stuff, due to Dad's amazing health, but I think our luck may be about to run out. I see a year faced with a lot more trips to the doctor, and potentially more surgeries, which doesn't make me happy, nor will Dad enjoy it, I'm sure. More medical decisions to make for Dad, made even harder by the fact that were he lucid, he would choose against them all. I'm thinking my schedule will need to be even more flexible as his immune system continues to wither, and I feel for him, all of this poking and prodding, this humiliating stuff happening to him, all things he would never choose and never want and be embarrassed by. It's hard to watch, as I"m sure many of our community know and understand.