Pain Meds 2

As I was describing the conversation and situation to a friend of mine, however, she made a very good point. Obviously, Dad is in some discomfort, whether its acute pain or not, and what would be wrong with obtaining more pain meds for him. As we talked, it seemed like more and more of a good idea. I'm definitely not one for drugging Dad up, but why not make him as comfortable as possible until the surgery?
We have such a bias against pain meds in this country. I have run up against it myself with my arthritis, and its made me wary. I don't like asking for pain meds, even in highly legitimate situations because of the stigma and because it makes me feel like a drug seeker. In the years that i've been in chronic pain, I've had to really fight both to get over my own pathology against asking for them(therefore asking for help) and I've had to fight against the prejudice and fear surrounding them.
I love being involved in hospice exactly because they support and promote comfort and the ceasing of pain through narcotics. If a person is dying, what possible harm could a few weeks of narcotics do to them. In this way, and through involving myself in hospice, I hope to make pain meds more acceptable, both for the dying and for those like me living in chronic pain.
I decided to do a brave thing. I called Dad's doctor, explained about the discomfort, and suggested that she prescribe a further course of pain meds for Dad, just until the surgery could be scheduled, and she actually thought it was a good idea. I was happy to be able to help my Dad out; it gave me an opportunity to fight for him, but also to fight for myself against society's prejudices and my own fears.

Pain Meds.

Dad's caregiver called the other day. He swore the night we took Dad to the ER that something else was wrong, that for a while something wasn't right in the area. Since the surgeon's visit when he learned he'd been vindicated about the hernias, he's been on the phone.
So now he's got the bit between his teeth and he's calling me to keep me posted on Dad's physical state and that he seemed to be in pain when they were cleaning the area. Apparently, Dad told them to leave him alone, which is unlike Dad as he's been getting more and more nonverbal. Personally, I'm not convinced that its the hernias giving him trouble. I think he might be sick of people poking him and changing dressings and stuff!
The caregiver wanted me to hurry up and schedule the surgery so that nothing would go wrong and Dad could be out of discomfort.
At the time of our conversation, I was suffering from a migraine, and also trying to finish up last minute Xmas stuff, so wasn't really in the mood to deal with him. I told him I'd get in touch with the surgeon as soon as possible, and hung up quickly.
TBC

Holidays.

I can't believe its already the 20th of December, this year is hurtling towards its end. They have a fake Christmas tree up at Dad's house, and some tasteful decorations. Its a nice tree, actually. Dad's caregiver stressed how important it was for the residents to feel involved in the change of seasons, which I agree with. It reminded me about how much Dad used to like Christmas.
He made a big deal of the holiday; he and my mom would go shopping in the malls at night when they stayed open late. Then on Christmas Eve day he would go out to the malls all day, getting home late at night and ferrying interesting packages straight to the basement. My sister and I would be jigging with anticipation. Then the next morning, we would have to wait until the living room was ready, and the tree was lit up before he let us out to see all the presents, wrapped and unwrapped. He always made sure there was an equal number of gifts for each of us, although we really didn't care after a certain age.
Christmas was never really the same after my mom died. We all tried for a year or two, but couldn't recapture that same magic. Every year when the holiday rolls around, though, I make the Christmas cookies my mom made and remember the lit-up tree and the stacks of gifts that my Dad took such pleasure in giving to us.

What Next?

I took Dad to the surgical center so they could check on his healing wound. His caregiver brought him over from the house and I met them at the hospital in the bright, new, glassed-in surgical center. We waited and waited, then were taken to a private room where we waited some more. To pass the time, the caregiver, who is from a former Soviet country, and I chatted about his past and experiences in America. We did a few stretching exercises with Dad and tried to engage him in conversation a little bit. He seemed to be in a good mood.
The caregiver was concerned about what he thought was a hernia in Dad's groin, so when the surgeon finally came in, we had him investigate the area. Luckily, the surgical site was healing nicely and he was pleased with its progress. Unluckily, he discovered that Dad had two hernias, one on either side of his abdomen! Apparently, hernias are not extraordinarily painful, but they can be dangerous if they become squeezed off and infected. So the surgeon recommended that within the following year we get them attended to.
All I could do was wonder at my formerly abnormally healthy father. Except for the dementia, of course, he was never sick, never had an injury, except for one broken arm from skiing. I'm not sure what the year is going to bring, but it seems as if it might be full of these physical problems for poor Dad. Little by little, that good health is being chipped away and it makes me sad. I guess it comes to all of us, but its hard to watch my formerly robust father get more and more frail and ill.

Cookies and cars.

I took my partner to see Dad on Monday and to drop off some xmas cookies and blankets. Dad was sitting quietly in the living room of his house. We gave his caregiver the tin of cookies, explaining that the peanut-butter ones with the chocolate on top were his favorite, ones my Mother used to make for him.
My partner and I sat with Dad for a little while, and my partner, who can engage and talk to anyone, began chatting to Dad about cars and engines and the Corvettes and Corvairs my Dad used to own. I was watching Dad's eyes, which at first were flat and unfocused. But as my partner talked about engines I saw Dad's eyes literally come into focus and I felt like he was really LOOKING at us. I thought it was funny that it took a discussion about car engines to bring him back from whatever quiet world he inhabits now.
I also feel like there was a little recognition for me, as I sat there with him, talking to him. I felt his eyes focus on me, just a little, and an expression came onto his face that I recognized. It was humor, and just the glimmer of an idea that I was connected to him. Whatever was going on, whatever he was thinking or feeling, recognition or not, it was lovely to see him engage for just a little bit.
I should have known it would take something car-related to make it happen.

Personal Post

Thankfully, Dad seems to have suffered no more pain episodes. We have an appointment next week to see the surgeon again, but the caregiver tells me everything is healing up. I went to see Dad again on Friday last week to check on him but also to make sure he had been given his pain meds.
A trusted friend of mine suggested that one of the reasons the caregiver hadn't given him the oxycodone was because he stole it. Trust me when I say this was not a reassuring thought! This was not something that had occurred to me but I had to acknowledge that it definitely happens. I found it hard to believe that the caregiver, who I had no reason not to trust and who seems to really care for Dad and have his best interests at heart, would do something so nefarious. But you hear stories all the time about dishonest caregivers and bad adult family homes. It just opened up all my fears again and guilt and doubts about having put Dad in the right place.
Its so hard to know who to trust, but I just can't be there 24 hours a day. Few people can. At some point, you have to trust you've picked a good person and a good place and rely on faith. While at the same time making a few surprise visits to make sure everything is going okay.

Emergencvy Room

Tuesday morning I went to see Dad. And he did not look good. He was pale and washed out, his eyes were staring and wide, he looked frail and uncomfortable and it was obviously hard to move. I thought that the surgery had taken so much out of him, it was terrible.

I sat with him for a little while, not really talking, but stroking his arm and just being there. I had to go to work, so I made sure his caregiver had everything he needed and I left. At 4:00 I got a call from the caregiver; Dad was sweating profusely, pale, hadn't urinated all day and seemed to have some lumps in uncomfortable places. Could I please come get him and take him to the emergency room?

I knew I couldn't ask my sister for any more help, since I was now back in town. We finally got it worked out that he would drop Dad at the ER in Bellevue, but he couldn't stay since he only had one other person on shift. I picked up my boyfriend and we made our way through traffic to Bellevue. When the caregiver and dad shuffled in to the ER, I was shocked; he looked even worse than the morning. It looked like he could hardly stay on his feet. A nurse must have caught sight of how badly he was looking, she came over andd hustled Dad and me into a private room. Poor Dad, the expression on his face as yet more people pulled him around, took clothes on and off, inserted things in his veins. He couldn't say anything, but I could tell how deeply humiliated he was.
TBC

Why is it always the holidays? 3

My sister she can be very good in a crisis. Fortunately, she's been to the ER a few times herself so she knows how it works. She was able to join Dad and deal with the doctors. I still received a few calls, however, when the anesthesiologist couldn't find her and needed to know if Dad had drug allergies and whether he had a health directive.

Its strange, with Dad becoming more frail and because of my hospice work, I've become more aware of health directives and DNR's. It's always difficult to think of it in terms of your loved one, though. I know that because of his religious and philosophical beliefs, Dad would not want huge measures to be taken for him. We even talked about it once on one of our walks.

He had his surgery, and spent the next few days in the hospital recovering as much as was possible. He was discharged on Saturday and brought home to his house by my sister; apparently a smile of relief appeared on his face as soon as he was brought into his room. When I went to see him Tuesday morning, I was shocked at how frail and wrung out he looked. The surgery, bodily dysfunction and hospital stay had clearly been very hard on him. He was healing, but he still didn't look well, and was clearly still uncomfortable. It was good to sit with him for a while, and I left feeling better that HE was feeling better. Unfortunately, however, Dad wasn't done with me yet.

Why is it always the holidays? 2

My partner and I made it to the airport, although it was pretty tough going due to the ice and snow. About to embark on the plane, I get a call from Dad's caregiver that the doctor had been unable to make it in due to the weather, but had prescribed antibiotics. This would be the first phone call of many during my trip.
The next I heard, taking the phone call in the my hostesses back room was that Dad had been to the doctor, who had sent him to the ER, she was so concerned about the infection. I was puzzled that a doctor would send him to another doctor, but how do I know? So Dad and his caregiver were at the ER, unsure whether Dad would have to be admitted. The day before Thanksgiving! I decided it was time to get some feet on the ground, so to speak. I called my sister. TBC

Why is it always the holidays?

Well, we've made it through Thanksgiving, thank goodness. However, it wasn't without its craziness, unfortunately, not to mention the Great Blizzard of 2010 that happened the night before we were leaving! Sunday night before Thanksgiving, Dad's caregiver called to say he had a boil again, this time on the the other buttock, and it was even larger this time. He wanted Dad to see the doctor, meanwhile, I was stressing out about the fact that I was leaving in two days and it was almost the holiday.
I called the doctor the next day and made an appointment for Tuesday, telling the caregiver that he would need to take
Dad as I would be leaving in the morning. This wasn't good enough for the caregiver, though, since not only was the boil bigger but Dad had a temperature of 102 degrees. All day there were various calls between myself, the caregiver, the doctor's nurse, and who knows who else. In the end, nothing really changed, the doctor's appointment would still be on Tuesday, Dad was given Tylenol, and hopefully, all would be well. Then the snow started. to be cont.

Personal Post

I've just received a call from Dad's main caregiver. Its Sunday night. Why do I always receive these calls on a Sunday night, or just before a major appointment, or just before a trip, as is the case tonight? He told me that Dad has another painful boil on his other side now and that he really should go see the doctor and could I get him in as soon as possible? I really don't know if I'll be able to get him in as its Sunday night and his doctor is usually pretty busy. I'm also leaving for the holiday on Tuesday, so something needs to be done or decided tomorrow.
It's not that I want Dad to suffer or be uncomfortable, but I just get so irritated that these things always manage to happen at the worst times. I also get irritated at the fact that it seems to be Dad's unconscious mission to make his illness as difficult and filled with weird and uncomfortable events as possible. Which I suppose is a selfish thought, but I long ago decided every thought I had, selfish or otherwise, was okay to have, as long as they weren't acted on.
You have to give yourself permission to be angry at your loved one, disappointed and irritated and all the other negative emotions. It's acceptable, it's okay. Thats what I tell everyone who comes to me in this situation. Otherwise, you're just going to drive yourself crazy with guilt and self-loathing. This is a tough situation to be in, and I think every emotion you're going to have is okay.

Personal Post

What is it about siblings? I can't be the only person who struggles with siblings that don't help out with parents as much as they should. From the beginning, I have been more responsible for my father than my sibling, and that's kind of the way I always knew it would be. Growing up, my father and my sibling had a difficult relationship, whereas my Dad and I got along a little better.
For years now, I've been paid to handle Dad's affairs and be on 24-hour call. It's a responsibility I took on willingly. But sometimes I get a little tired of being the one in charge, being responsible. I don't get that many calls, however, even when I go on vacation, I always have my phone with me, knowing that I might have to deal with some emergency. And there has been the occasional problem, although never terribly serious. However, my sibling goes on vacation and never worries about Dad, never asks how he is or whether I'm going to be taking care of things. Again, I realize I'm getting paid and I realize I've taken on the responsibility willingly. But sometimes I get a little angry and wish my sibling was a little more involved.
I often talk to other people dealing with a parent who is ill or has dementia like my Dad, and the number of people who have at least one AWOL sibling is striking. It's a family dynamic that seems incredibly common-and that's very sad.

Excerpt

"Every day at the chiropractic office where I worked I would get a call on my cell phone around four o’clock from Dad, checking in.
“This is Joy”
“Hi, its Dad.“ Hearing his measured tone, deep voice, and careful pronunciation reminded me of Sunday mornings when I was little, sitting on his lap and listening to him read all the voices in the Sunday comics to me. Comparing that man with who he was now made my heart hurt.
“Hi, Dad. How’s it going? Did you do anything fun today?“ I always tried to put him in a good mood.
“Fun? No, not really. I walked around the neighborhood and down to the beach to watch the ducks. Had some lunch.“
“Okay, Dad. Well, I’m at work so I have to go, but thanks for calling. Take care of yourself, and I’ll talk to you tomorrow.“
“Okay. Am I supposed to call you tomorrow?“
“Yes. Put it on your calendar and give me a call in the afternoon.“ This type of exchange became all too familiar; phrases and questions repeated, answers immediately forgotten. I would come to understand that this was the litany of dementia, an exchange of love marred by disconnection. Emotionally, I was having problems with the situation. Like my father, I was denying what was happening, only in my own way. I wanted him to be my parent, opinionated, authoritative, and able to care for himself like a normal adult. The reality, of course, was that he was ill, even though he denied it. He had become disoriented, depressed, and unable to manage his life.
But I still needed him to be my parent. He was the last one I had and I was not ready to let go of that. I was completely unprepared to parent him. I was so angry with him, it felt as if he was escaping from his life, escaping from responsibility. I would have no choice but to care for a man who had not cared for me at certain times in my life when I had most needed it. I was bitter at the thought that I would be required to use my limited energy and time, and perhaps exacerbate my chronic illness, to look after this evasive, exhausting man who wouldn’t even acknowledge that there was a problem. I could not face switching roles."

New Chair

I got a call from Dad's caregiver the other day. Apparently, Dad's lounge chair was broken and old and the caregiver wanted to get him another chair. One of his residents had a chair that she had used for a month but she was now in a nursing home and wasn't using it. He described the chair as being a great deal, then he put the woman's daughter on the phone and we chatted for a little while on the phone. She described the chair, a Lazy-Boy designed for geriatric use with a massage function and a heater inside. She offered the chair to me for $400. I was a little taken aback at the rapidity of the transaction and told her it sounded great but that I would make time to come see the chair and decide then.
After she put the caregiver back on the phone, I couldn't help but be a little upset at how I perceived this was being pushed on me, and I'm sure my voice was a little firm when I asked if this was really something Dad needed right now. But then he said something that stopped me in my tracks. He said that certainly, Dad's old chair could function for a little while adequately, but that he was looking ahead to the future when Dad would most likely be spending more time in the chair and might need the special features it offered. This, of course, was something that should have occurred to me but just doesn't. I'm very lucky to have someone there who IS thinking these things and has more experience. A little subdued, I told him I would come look at the chair and let him know, but I probably will buy it. It just brought home to me once again that this process has only one ending, and we're moving toward that ending more and more quickly.

Personal Post

I'm so excited! According to my hit counter on my blog, I just passed 2000 hits! I realize for some blogs that may not be much, but its a huge deal for me. Thank you to all the people reading the blog and sending me their lovely comments.
In other good news, I've found a site through which to self-publish my book and I'm hoping to have it as good as done by the end of November. I'm planning to hook it to my blog so that you can click on the link and go directly to Amazon if you so desire. Just finished the cover design and it looks good! I'll also be setting up some readings at local bookstores (hopefully!) and will be posting those so people can attend if they can. Again, thank you for your support.

Book Excerpt

“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.

It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."

Book Excerpt

“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.

It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."

Book Excerpt

The minute I moved in with Dad, I began living in a sociological and behavioral study. When I could think dispassionately as a caregiver, the whole experience was fascinating. When I grew too emotionally involved, it was devastating. After years of living with Dad as a child, I was painfully familiar with his behaviors, mannerisms, and attitudes. When I became his caregiver, I saw just how much things had changed. There were remnants of my father, a skeleton of beliefs and behavior. But overlaying that, like a skin, was an interesting new layer of mannerisms and ways of behaving. My father was a whole new man; together we would learn new things, develop a new relationship and have adventures I never could have anticipated.

“This shopping cart must be Communist, it always pulls to the left!” Dad said, with a sly grin, in the middle of shopping at Safeway.
“Yeah, you’re right. Maybe it’s a democratic cart,“ I said, bagging up some fruit. I heard this every single time we went shopping, often several times in the same trip. There were multiple carts with bad wheels at the store and Dad always said his line like it was the first time he’d thought of it and always with the same grin. I knew it was repetitive, and not particularly clever, but Dad had become a jokester, something once deeply buried within him, and I was all for encouraging it.
It was remarkable what stayed and what went with this illness. An incredibly modest man became someone who scratched himself and urinated unashamedly in public. A shy, reserved man began flirting with women young and old, suggesting they go out with him. The most mundane memories had become the piers of his mind, while the vital information sloshed uneasily between them, like water. Perhaps it only seemed that way because he talked constantly about the unimportant things in a bid to remember them, to hold on to them. The fact that he was an engineer deeply defined him. Several times a day, he regaled me with stories about flying in an empty jet with Boeing test pilots, tweaking the flight systems he designed, yet he rarely spoke about my mother. Was it because he didn’t remember her? Or because he did and wanted to keep the memory close to himself?

Book Excerpt

"Can there be any task more difficult for a child to face than having to parent your parent? Stepping in to care for a parent with Alzheimer’s, who will henceforth need every decision made for them? Weathering the inevitable and understandable anger and resentment, often focused on their caregiver? All while dealing with the fact that your parent will ultimately forget all about their lives and their loved ones. I had made the choice to take up that burden. What made it even more difficult for me was my relationship with my Father. He had been physically absent for much of my childhood and emotionally distant when with the family. Throughout my life, I felt that he didn’t know how to build a relationship with me. Nor did he seem to want to know who I was. At a crucial moment in my life, he had neglected my physical and emotional needs, leaving me alone dealing with a near-death illness. When I recovered, he never acknowledged I had an illness, never recognized that said illness might be making my life extremely difficult to lead, and withheld the financial or physical help I might have needed.
I was sacrificing precious time and energy caring for a man who not only hadn’t acknowledged me in the past, but due to the nature of his illness, was not able to recognize what I was doing for him in the present. If I wasn’t careful, I could completely disappear; a forgotten shadow able to feel nothing but resentment, bitterness, and anger. I was fortunate to have a therapist who repeatedly pulled me back into the present, reminding me why I was doing what I was doing. I knew that I didn’t want to miss anything during this long goodbye. I wanted a chance to connect with Dad before it was too late. She helped me work through old anger and resentment while living with Dad, and showed me that while he would never be able to go back and change the past, the exchange and the connections we were making now would give me rewards to carry into the future."

Personal Post

It's a very strange thing, seeing my father get more and more frail. The man came down with fewer than three colds in the entire time I was growing up; he never got sick, or at least never admitted it if he did. He was one of the healthiest people I knew, which made it a problem as he fell further and further into dementia. We knew that while his brain was unhealthy, in body he was like an Olympic athlete, and he could live forever. But over the last year or two, I've been taking him to the doctor more and more, usually for some sort of infection that started off small.

I got a call yesterday from a visiting nurse service asking for permission to go visit him to treat a boil on his leg; something his caregiver had told me about and for which Dad had taken a course of antibiotics. Apparently, the boil hasn't healed completely and the doctor wanted a nurse to assess it. I suppose a boil isn't that serious, but the fact that my father is growing more and more frail, falling victim to one infection after another, makes me thoughtful. At times over the last seven years, it seemed like he would live forever, but now I'm wondering sadly if his time is a lot shorter than I thought.

Hospice

It's so great to see new followers, and also to get notifications of other blogs like mine! Keep up the good fight, everyone, and thanks for continuing to read.

I had another visit with my hospice patient. It was earlier in the day and he seemed a little more energetic. This time the wife was leaving us to run errands; a family member would stop by in two hours to take over. She showed me where the emergency numbers were and the DNR orders. All hospice patients have Do Not Recussitate orders and I'm required to know where they are in case an ambulance needs to be called. The nature of hospice is Death with Dignity; no heroic measures are usually taken.

We decided to play chess again, and he roundly beat me the first game. The second game went a little longer, and I actually made a few moves on my own that he approved of! In the end, we called it a draw as he was chasing me around the board and was feeling tired. He did say, kindly, that I had the potential to be a good player if I really put my mind to it and practiced. I thought that was so nice and it encouraged me to keep playing! We discussed briefly the theory that women make worse chess players than men because they aren't as aggressive; but he was of the opinion that women ended up winning because they were safer and husbanded their resources better. Either way, I hope to practice on my own so I can give him a decent game without assistance!

Hospice

I have a new hospice patient, a lovely older gentleman. His wife and primary caregiver is still a little wary of the hospice system, but I paid them a visit last week and sat with him while she took a bath and had a little time to herself. I think he was a little irascible about the fact that he needed someone to watch him while she was still in the house, but he was very courteous. We played a game of chess together. I am not a great player, and am lucky if I can remember which way the players move, but he was very gracious about helping me out and telling me if I had made a bad move. In the end, we came to a draw so I guess I didn't do too badly. I'm not sure what he thought of the whole experience; a perfect stranger invading his home and forcing him to play bad chess when all he wanted to do was rest but they invited me back so I guess I did something right!

Hospice

I was visiting my hospice patient last week. When I first started seeing her, she was bedridden, slept a lot, and was receiving last rites from the priest. Now she seems to be doing much better, is up in her wheelchair part of the day, and can sit and talk with me. Granted, we talk about things I suspect she experienced in her past, or things she thinks she sees, but that's okay with me. Every now and then, however, I get a glimpse of the lucid personality that still lurks underneath the dementia and confusion. I was reading quietly to her, and she motioned with her hand to have me look up. When I did, she smiled at me, then something in her eyes shifted and looked almost sad. "Oh honey," she said, "I'm so tired... I'm so tired." I could tell this was the real woman talking to me, expressing what she was really feeling, and I felt for her. What must it be like to be so old and frail, unable to move much on your own, feeling the weight of the years and your infirmity weighing down on you? I touched her hand gently, and said, "It's okay, you can sleep now." And I watched her eyes flutter closed, one hand still picking gently, busily at her oxygen tube.

Excerpt

"The sheer volume of paper struck me every time. There was always more paper. The entire house felt like it was made of paper; walled, buttressed, and roofed with paper. Drifting against every wall in a storm of cellulose. Grubby stacks of newspapers, junk mail, useless prospectuses, and magazines supported the sagging walls. Old bills, bank statements, and ephemera spilled out of boxes and filing cabinets. Letters, contracts, and certifications filled up every drawer, every cabinet. Every scrap of paper that had ever entered the house remained, heaped and hoarded anywhere space was available.
It was not the first house I had ever emptied; a few years before, we had cleaned out my Grandmother’s house in a few weeks. Carrying over some of her belongings and papers to become part of the strata at our house. It’s hard to know how much a house can store, especially if the same family has lived there awhile. And you don’t realize that, of course, you have to also get rid of the bones: appliances, furniture and soft furnishings, everything. You have to strip it right down to the walls."

Excerpt

"Several years ago, standing on the edge of the Grand Canyon, I was amazed at the sheer beauty and majesty I saw before me. Taking in the colors of the rock, the many striated layers of ancient earth that made up the canyon walls, I was struck with feelings of awe and delight. Standing on the edge of the carpet in my father’s house, viewing the chaos and the layers of junk and paper, I was struck with similarly powerful, if slightly darker emotions. How in heaven’s name were we going to be able to make even a small dent in the huge mess that had taken over my childhood home?
Picture a big house, roughly 2700 square feet. Imagine the inside of the house as having layers of stuff, the geological strata that reminded me so forcibly of the Grand Canyon. The top layer, laid down the most recently, consisted of huge amounts of debris and recycling that Dad had accumulated over the years. Not quite at the point of finding bodies mashed flat and mummified between stacks of trash and paper, it was approaching critical mass.
Under that, the basics: furniture and curtains; house wares and food; clothing and carpeting. Below that rested years of accumulated tools, car and airplane parts, and toxic paint cans in the shop. Old books and my mother’s belongings, our old toys and things we’d left behind, Christmas decorations, ancient photo albums, and numerous boxes and full filing cabinets. Then, the accumulated years of papers and belongings of my parents; everything of mine and Big Sister’s that had been saved and stored; and whatever had made its way over when each of my grandparents had died."

Personal Post

Hey everybody, I've been on vacation for the last two weeks and it was great. I'll be back posting now but just wanted to give a shout-out to my friend Leslie. Her website link is now listed on my site, she's the wonderful person who spent 6 months helping me out with Dad's house. If you've got a similar situation, or just need to get a little organized, she's the person to call! I've also decided to self-publish my book and hopefully make it available for purchase through the blog so keep checking back for updates!

Walker III

Dad's doctor is so great-she always talks directly at Dad as if he can understand everything she's saying, and she never talks down to him or is insulting. She carefully explained to him what she thought the problem was, that we all knew how he valued his independence, and that if he fell and broke a hip, his independence would be severely curtailed. She then said gently that she was going to suggest he use a walker. And just when I think Dad can't understand anymore what's happening to him... I swear I saw his face fall and settle into dismay, and I know I saw in his eyes the comprehension of yet another indignity being visited upon him. I think he understood very well what the walker meant, and I felt my heart contract with pity.

Walker II

After the doctor sat Dad down, she turned to me and Dad's caregiver to discuss what she thought. She said that she didn't think the problem was because of dizziness or any inner ear problem. She said it was possible it had something to do with the medication that he was on but she also thought it was structural, that due to the Parkinsons, Dad was losing nerve feeling in his feet; he might not be able to tell where his feet or body was. His body was literally losing the ability to remember how to walk. The minute she said that, I knew what was coming. I knew she was going to suggest a walker, the penultimate insult to Dad's independence and ability to move-the only thing still making him happy. My heart fell. I knew this was not going to be an easy problem to fix.

Walker

Just when I think Dad has finally past the point of being aware of the terrible things happening to him, something else happens and I have to wonder. His caregiver called me the other day because he was worried about Dad. Apparently Dad has been having what looks like dizzy spells and his caregivers were concerned so they called his doctor and made an emergency appointment, then called me. Why is it that you can have free spots in your schedule everywhere except for one thing you have to do, and something comes up that has to go exactly where you don't have the time. The doctor's appointment was, of course, right during something else I had planned! I managed to get there with Dad at the right time and we met up with his doctor, who is absolutely great and absolutely on my side where Dad is concerned. Dad seemed more dozy than usual and kept falling asleep during his exam, even when the doctor was talking to him. She managed to examine him as best she could, however, even having him walk down the hallway a couple of times. I was a little sad to see how slowly he was moving.

Personal Post

I've been poking around on the websites of some of the big Alzheimer's groups and found some great information on www.alz.org that I listed on the blog. One of their partnerships appears to be with ElderHealth, an organization in Washington that provides many services. I hope they or something similar exist in other states. It caught my eye, however, because for years Dad went to the day program provided by Elderhealth, a kind of dementia-daycare for adults. I thought it was an amazing program; they provided days worth of activities, lunch, health services, and support groups, which my father, the original psychiatry-shy male, appeared to really enjoy and find helpful. Eventually, it no longer worked for him, but if you have such a program in your area, and your loved one is reasonably mobile and social, I can't recommend it enough as a way to keep them connected and thinking, even if its just a little bit.

Personal Post

To all the new lovely people reading my blog: I originally started it primarily to support a book I was trying to publish. I posted excerpts from the book for a long time, so I encourage you to go back and read some of the first posts if you'd like a taste of the book! I might re-post some of my favorite excerpts, as well. I'm still working on getting it published so I hope to be able to announce soon on the blog that its coming out! Until then I love and welcome your comments, advice, links, and everything else. Keep reading!

Personal Post

In the several months I've been with my boyfriend, my social circle has expanded exponentially due to the fact that he knows about 4,000 people. What I find both interesting and sad is the fact that I have discovered two people so far that are facing the same struggle I faced several years ago: finding care for a parent; making difficult choices; and grieving the loss of a loved one to some form of dementia. Two people out of about 25 to 30, and that's not even including the times I met and spoke to people and what I do for my father never came up. How did this happen? More and more people my age are facing the long road of care and hard choices and sorrow and all we can do is band together and try to help each other on the journey.

Barbecue

A few weeks ago, the AFH where Dad lives had a family barbecue. It happened to fall on the first day with actual sun we've had in Seattle, so that was a plus. I went with my boyfriend, and we met my sister there. We all sat with Dad around a table, talking and laughing. I'm not sure he completely knows who we are anymore, but he responded like he always has to my sister's funny stories of the strange things that happen to her. We all got plates of food, and I felt a low-level panic because I've never had to help Dad eat before. Luckily, he would occasionally pick up his fork, load it with food, and bring it to his mouth, but more often he just sat there. One of the care-givers came over and fed him a few bites, indicating it was okay to feed him. So I picked up the fork, put some food on it and brought it to his lips. He seemed a little reluctant at first, although I don't know if that was because he didn't want any food just then. If he does have some glimmer of who I am, was it hard for him to have the daughter HE once fed, feed him?

Personal Post

I'm so excited to suddenly see followers and people commenting. Bring it on, I love telling people my experiences and hearing theirs. If I can help in any way, I'll answer any questions. I'm still trying to get representation for my book; an agent was really interested but in the end turned it down so I'll keep trying! Thanks so much for reading, send me your info and I'll check out your blogs as well!

Part III

I ended up calling the employer of our aide and explaining the situation, asking that he not visit until the situation had been resolved. They were great, and when they called him into a meeting, he admitted to some wrongdoing, but he also accused the house of not taking care of Dad as well if he wasn't there, etc., etc. He eventually called me and explained his side of the story, apologizing, but also going into a diatribe about Adult Family Homes and how they had lied about him somewhat. I told him how much we appreciated him, that I was sure the truth was somewhere in the middle, and that eventually he would be allowed to see Dad again. I believe he was somewhat mollified. And the owner of the AFH gets complete control of Dad now, in a good way, but in exactly the way I suspect he wanted. I'll keep letting him think that and only rattle his cage occasionally. Its just amazing to me the twists and turns this whole process has taken, and the drama that still surrounds my father, demented and ill as he is.

Part II.

I sat there at the table for a bit, listening to the owner expound upon our aide's wrongdoing and the ways in which it had disrupted the house, etc., etc. He's a strong-willed man, an immigrant from a Communist country (yet again, other cultures taking care of our elderly!), and while being a lovely man, is forthright and likes things to go his way. When I deal with him, I have to use what my boyfriend, Paul, calls my "Big Girl Voice" in order to make sure he doesn't walk all over me! I soothed him, telling him that, of course, I'd be dealing with the problem and calling our aide's employer to discuss the problem with them, but that our aide wouldn't be coming to the house until we'd figured out the situation. This seemed to go a fair way toward soothing the owner, but every time I suggested that we might have the aide, who is, after all, almost like a brother to Dad, it sparked yet another discussion about how well they tried to take care of Dad and how they relied on their good reputation, etc., etc. I sensed I was being played, so I said firmly how much I relied on their care and judgement, how secure I felt having Dad in their hands, and how I trusted them, but that I would be making any final decisions about who came to see Dad, as long as it didn't interfere with how their house operated.

The case of the disappearing aide.

I received a phone call from the owner of the Adult Family Home. Ostensibly, the call was to ask me to visit so I could sign a document. However, it soon became obvious that there was another reason; he wanted to complain about Dad's long-time friend/aide. Apparently, the aide had been coming almost every day, as he was scheduled, however, he was often going directly into Dad's room and napping for most of the day. He was not taking Dad out on little trips nearly as often as he reported, and the owner felt he was causing a mild disruption in the house. He also mentioned that the families of other residents, and specifically one woman who visited her husband every other day, were bugging him to do something about it, or at least to inform me. I have to admit, I was a little shocked and speechless. Dad's aide has been with us from the beginning, almost eight years, and I didn't know who to believe in this!

Hospice

In the end, my patient didn't die while I sat there with her. It was an honor to sit with her and help make her more comfortable. Her partner returned from his errands and I stood up to talk to him in the living room. We talked quietly about my next visit, and I told him that if she did end up passing soon, not to worry about calling me, that my coordinator would do that. I went back into the bedroom and said good-bye gently to my patient, who found the strength to lift her head and say good-bye to me. On my way out, I stopped by her partner, who was almost slumped with grief. I asked him if he was a hugger and he looked confused for a minute than smiled and stepped toward me. I gave him a big hug, told him to take care of himself, and left the apartment.
He called me that night and told me that my visits, although few, had meant a great deal to him and my patient. He told me she had died an hour before.

Hospice

Sitting there in that quiet, darkened room, watching the tree branches through the window moving lazily in the breeze, listening to the hiss and gurgle of the oxygen machine, I pondered that question. If she died right now, or while I was there, how would I feel about that? Would it totally freak me out, or would I be fine? I'm no stranger to death, or even to seeing people die peacefully in front of me, but its been a while, and this was a stranger. I decided that I would be okay if she died, although I would prefer she didn't. I would be okay with seeing her leave this earth, witnessing her death, even though I would probably need a good big hug from my partner later. I was filled with a sense of quiet and peace as I sat there watching her breath, watching the trees, and I felt that spontaneous welling up of tears both happy and sad that tells me I'm in exactly the right place at the right time, doing exactly what I should be doing.

Hospice

We had arranged for me to visit my patient at the same time as the bathing assistant was to visit so I could help change her sheets. I got up that morning, expecting to go to my patient later when I received a call from her partner. My patient had experienced a very bad night and was now semi-comatose. He was afraid that it meant her end might be coming. I arranged to visit anyway so he could run some errands, when I showed up at the apartment, I met the partner and could see the grief and anguish in his kind eyes. I comforted him as best I could and then went into the bedroom to greet my patient. She was slumped over the table by her bed, struggling for each breath, but when I entered, she looked up and actually recognized me. It was a lovely moment, but I was sad at what I thought might be coming. As I sat there with her, watching her fight for breath, it occurred to me that she could possibly die while I was with her.

Hospice

On my second visit, I was astonished to find my patient up and around, if a little slowly, making lunch and cracking jokes with her partner. I found her to be delightful, funny and wry; it was clear they had a familiar rapport, a give and take of sarcastic comments and faked outrage. It was a pattern familiar to me from my own relationship, and I noticed them testing me a little to see if I could understand, and even more importantly, respond in kind. I began teasing them back, and I could see them relax a little; we were part of the same tribe! After shooing her partner out the door to take a much-needed break, however, she turned more pensive. She began speaking of her fear, her dislike of being dependent and slow, unable to do the things she really wanted to do and tired of depending on others she didn't want to burden. I told her I understood, sharing some of my own history of illness and dependence. I could tell how much she loved her partner and her children, and how much she hated the idea of being a burden, and also of leaving them. It was an honor to sit with her during this time, and help in some small way by listening and understanding.

Hospice

On my first visit to my hospice patient, I didn't even meet the patient, who was having a very bad day. Instead, I had the opportunity to speak to my patient's primary caregiver and son. They were lovely people, unsure at first what MY purpose was for being there. I explained that I was there only to take care of them; I was that good friend who you would call for help, if only you could bear to bother them. I was there to do some light housekeeping, read to the patient, or sit with them to give the caregiver a break or the chance to leave the home. This seemed to relax them somewhat and they proceeded to talk to me about the situation and how they felt about their loved one's illness. I was struck by how open they were about what was happening and about to happen. When my mother was dying, no one in my family really spoke about the process, how it would look, and what would happen. As an adult, I know now what to expect, but as a young person I would have appreciated the openness exhibited by this family.

Thanks!

I just want to say thanks to all those people who have checked out my blog, you've pushed me past 1,000 hits! That may not be much to some bloggers, but to me its pretty impressive. Keep tuning in and telling your friends; I'll get this book published someday, and you'll be the first to know when I do!

Hospice

Hey everybody, I'm back, sorry for the long hiatus. As I said back in March, Dad is settled and happy (knock on wood!), so for the time being, there's nothing new to write about his new situation.
I've begun a new chapter in my life, however. Two weeks ago, I finally received my first hospice posting. I was nervous and anxious: I've sat with the sick and the dying; I've lent a hand when someone needed it by running errands or whatever; I've even counseled and comforted people who were grieving or ill. This felt different, however, this wasn't a friend of mine who would excuse me for a misstep or wrong word or forgotten commitment. These are people in the grip of what may possibly be the worst time in their lives; either they, or a loved one is gravely ill and close to death. The situation can be chaotic and confusing, people coming and going and relaying all sorts of information. If I mess up here, the consequences could be very, very bad.

Lewy what? cont.

So everybody seems to know about Alzheimer's, I guess that's the face of dementia diseases, but Lewy body is just as prevalent. It includes delusions and aggression, hallucinations that the person swears are there. I think Dad had it all along, and while the Brighton people swore they knew how to deal with it, they were always watching Dad for more bad or aggressive behavior. I'm pretty sure he picked up on all the watching and it just made him act worse, or become more withdrawn. It's possible that people with Lewy body are better able to form new memories than those with Alzheimer's. It may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom, too.
I haven't been updating the blog as often because, thankfully, Dad has been happy and comfortable and there have been no crises. As I enter into Hospice volunteering, however, I'm sure I'll have many general stories to tell about the people and events I experience.

Lewy what?

I've been mentioning Lewy Body dementia now for a few months, ever since Dad's doctor reassessed his preliminary diagnosis. What is Lewy Body, one asks. Interestingly, before this last summer, I had never heard this word before. Then I fell into conversation with a woman at one of my art shows whose husband had just died, and she said it was from Lewy Body, a Parkinson's-related dementia. As is so often the case, after that, I heard the word everywhere; suddenly, it had become the newest dementia diagnosis. It's a kind of dementia, and for those of you who don't know, dementia is basically a general decline in cognitive abilities due to degeneration of the brain. Its a symptom, not a disease in itself. Alzheimer's is the most common form of dementia, but Lewy Body is now thought to be the second most common. It causes cognitive problems like those in Alzheimer's, and motor problems like those in Parkinson's. It also seems to have its own passel of horrid and challenging symptoms not found in Alzheimer's. It seems to rapidly be becoming the most difficult and feared form of dementia, from all the accounts I've heard. (cont.)

Personal post

Well, Dad continues to do really well in his new home. The last time I stopped in he was either shopping, walking, or playing a rousing game of tennis. The man has a better social life than I do! I still think every phone call could be from the owner of the facility, telling me something has gone wrong, Dad's landed a punch on someone... I suspect this low level anxiety will never completely go away until Dad's no longer with us. So far so good, however.

On another note, I interviewed with a Hospice coordinator yesterday. She thought I'd make a good candidate, and my training has begun. As we talked, she detailed the job: the kind of people I'd be likely to meet; the situations I'd be walking into; the likely reactions of patient and family. We talked about dementia and the fact that I already had a background in it; apparently, some of the volunteers refuse certain patients, saying they don't 'do' dementia. But as the coordinator pointed out, sadly almost every house I'll walk in to these days will have someone with some form of dementia; the patient, his or her spouse/caregiver, another family member. This reminded me of the statistics I've quoted in my letters to agents. 1 in 3 people know someone affected by dementia, 1 in 10 Americans have a family member with some form of dementia, and 7 out of 10 sufferers live at home, cared for by, you guessed it, a family member. Its no wonder that this has been called a major epidemic of our time.

Vote!

To all you Youtube fans out there, this was sent to me by one of the founders of the site for people with early-onset parents, Spoke Your Mind. If you have a minute, check out the video and vote! Joy

Hey there!

I need only a hot second of your time...

So I recently submitted a short documentary video that spotlights Max and
his dad (who's living with Alzheimer's) to a Neuro Film Festival.
There's a YouTube contest going on for "Fan Favorite" with a chance to
win a $500 prize. If we win, the money will go directly to Spoke Your
Mind.

Simply follow the two easy steps below and find our video titled: "The Music in Hugh: A Look at Young Onset Dementia".



•Step 1: Visit youtube.com/neurofilmfest and log in using your YouTube username and password to view entries. If you don’t have an account yet, sign up now, it’s quick and easy! Gmail users can sign in using their Google username and password as well.
•Step 2: Once logged in, rate each video in the playlist using the star system in the lower left corner, near the play button.
Comments
have been turned off to allow each video to stand alone and ensure
fairness in judging.

Thank you for your vote!

Best,
Emily

Getting out.

Months ago, at Dad's old facility, the administrator asked if we would no longer allow Dad's aide to take him out more than once a week or so. They were convinced that Dad became increasingly agitated and angry upon returning from an outing. He went to all the doors repeatedly, testing them and trying to get out, being aggressive to the staff. They swore it was because he was becoming overloaded by the outside world, that this eventually happened to all dementia patients. Well, I swung by Dad's new home to drop off some pants the other day and he was out. Every time I call to check in on him, he's out. He gets out more than I do, now! His aide and the other caregivers are taking him out shopping, to the park, walking, playing tennis, lunch, and a bunch of other places. And he's doing just fine. He's calm, non-aggressive, doesn't try the door when he's home, and seems quite content. This leads me to wonder: what was causing the problem before? It obviously wasn't the outings, and now I'm sad for all the enjoyment Dad could have been having if I hadn't listened to his old caregivers.

What a difference a place makes...

I went to visit my Dad today, and bring over the remaining cupcakes from my birthday party last night(39! Yay.). As usual, the house was clean and calm and everyone was happy to see me. I sat with Dad on the couch quietly for a while, and I don't think he knew me; he seemed a little irritated. But when I joined him and two of the other residents, both lovely people, at the table, he seemed to warm up. As they ate their hot dogs and onion rings, we all talked about where we had lived, what jobs we had done, things we liked to do. And Dad started to remember things about himself and his life, correcting me on the name of a city where he had lived as a boy, and laughing with me about his old love for skiing. And he seemed to remember me, talking to me about our family and my sister. In the old facility, there would have been a bustle of caregivers feeding and cleaning up, too many other residents talking or yelling, and an overall feeling of rush and tasks to finish. Here, all was calm and leisurely, there were no schedules or tasks to be completed, only people who needed to be fed with respect and in comfort. It was lovely.

So Far So Good...

The reports keep coming in; Dad is doing great in his new home! I am beyond excited. Apparently he has settled in just fine, is enjoying the food and many walks around the neighborhood, and is sleeping well. I'm not entirely sure what I envisioned could happen, but I never dreamed it would go this easily. It looks like we found exactly the right place, and I'm really grateful. Greg, the owner, and his wife, are the nicest people; they truly care about the people in their care and are committed to what they do. Thank god there are people in the world like that. Let's hope that the happiness continues!

Personal Post

Well, stage one is done. On Wednesday, we successfully moved Dad to the new AFH. The owner kindly helped us with the move as we ended up being a man down on the day. It was actually a fairly quick process; we packed for two hours, deciding what to send over and what to throw out or donate. Del took Dad out for the day so he wouldn't get unsettled about what we were doing. Then we drove the short distance over to the new place and unpacked Dad's familiar bed, horrible oak headboard and armoire, and everything else. We hung the pictures and that was about that. It was a little odd, actually. I was certain when I moved him into Brighton that it would be the last place he ever lived. It was hard enough getting him in there, that I never wanted to contemplate another move. But this move was quick and easy, and a place that was his entire environment, his whole life, filled with the people who cared for him hourly, is no longer. His old room is empty, his new room is waiting.

Personal Post

On Monday of this past week, I met with a nurse at Dad's current facility to do an assessment of him prior to his move to the new house. Basically, I sat there for an hour and a half, answering her questions as to his likes and dislikes and behavioral patterns. At one point, Dad and Del came into the room so Dad could use the bathroom. Dad seemed surprised and a little put out to see two people occupying his bed, but he didn't make a fuss. Del patiently led him into the bathroom, talking cheerfully to Dad the whole time, and shut the door. The interview continued, but my attention was now divided, focusing also on what was going on inside the little bathroom. I could hear rustlings and clinkings, the faint, loving chiding by Del as he helped Dad off with his clothing and checked him. Perhaps he even helped Dad onto the toilet. My mind was diverted with two thoughts: one; that my proud, intelligent Father was almost incontinent, a situation that would have both mortified and horrified him, and, two; a person not even related to my Father was helping him do that most private and personal function, with kindness and compassion. I had only a moment to begin to process what these two things meant to me before being pulled back by the nurse to continue our interview.

Personal Post

We took Dad to lunch last week at the Adult Family Home we liked the best after our tour. All meeting at his current facility, Dad and Del went in one car, and my sister and I piled into mine. They were just starting lunch when we got there, and the owner, a quiet-spoken yet authoritative gentleman from Romania, welcomed Dad in and seated him gently at the table with the other residents. One of the women seemed extra perky and we found out that she was actually the wife of one of the residents, who came to visit every other day or so. As my sister and I sat on the couch and observed lunch and the caregivers, she directed a few questions our way. Eventually, she came over to join us, a tiny, slightly bent over package of energy and wit, wearing a sequined sweater and speaking with a slight accent. She began to tell us her story. It turned out she and her husband were Dutch, and that they had lived an extraordinary life together. Evidently they had been in Indonesia during the Second World War and been imprisoned in a concentration camp. They had no children. And how, after all the suffering and life they had lived, her husband was diagnosed with dementia and was now under hospice care at an Adult Home she was beginning not to be able to afford. She laughed that he was younger than she and much the healthier of the two, and that she had married him relying on the fact that he could take care of her in old age. While seeming rueful at the cruel paths life can take, she was at the same time, philosophical about it all. I couldn't help but admire her spirit and attitude, and I look forward to getting to know her a little better as Dad settles in to his new home.

Personal Post

We viewed several Adult Family Homes this week, and I have to say I'm fairly amazed at the variety of places out there. The one we viewed last week was in a smallish, older ranch-style house. It was a little dingy, a little run down and worn around the edges. One of the ones we saw this week, however, was brand new. It had no furniture OR residents; our Dad would have been the very first. This place was even one step up from a McMansion; it was ginormous! It squatted, gleaming and ugly, amongst the smaller, dingier, ranch-style 60's houses surrounding it. Dark, polished wood floors, twenty foot ceilings, huge Grecian columns, trendy black granite countertops in the kitchen. Striking certainly, but in no way homey. The second, run by a lovely Romanian couple, was like something out of My Big Fat Greek Wedding; flowered carpeting, chandeliers, knick-knacks, window treatments, swags of material. It was opulent, yet oh-so-slightly tacky. They had built it recently from the ground up and were immensely proud of it, as they should be, considering they were immigrants to this country.

Personal Post

I finally called a placement coordinator, a specialist who knows a lot of the family homes and assisted living facilities in the area. She took all of Dad's information and all the elements we were looking for, went to visit him at his current location and look at his chart, and then she's going to compile a list of places for us to visit. We're going on Tuesday, and its going to be a long day. She said to put aside 4-6 hours, which reminds me of the last time I went looking for a house with a real estate agent! I guess that's essentially what we're doing. When we pick a place, that place then pays the coordinator a commission, which I guess is better than us having to do it! I really hope this pays off; I feel like I need to get Dad settled(again) before getting on with some of the other things I want to do, like hospice work and getting this darn thing published!

Essay Excerpt I

'"Hey, Dad, how're you doing?" I ask, bending down to peer into his eyes, eyes that have grown rheumy with age and vacant from illness. His customary colorful flannel shirt, layered over two sweatshirts and an undershirt, is tucked into his waistband, belted pants pulled high like a geek from a bad movie. We are here today to meet with the mental health nurse, who is here to talk to Dad and evaluate him. The facility requested this evaluation because of Dad's growing aggressive and territorial behavior; they want something done, whether its a med change or a difference in care, but I wonder how much of it just the way the illness is going, regrettable, and uncontrollable. The smells of the facility seep into my consciousness; age, disinfectant, a faint whiff of urine, and apples-always apples. My mind wanders for a minute, wondering why every facility I've ever been in smells like apples. Urine I get, buy why apples?'

Personal post

This is going to be tougher than I thought. So far I've visited two Adult Family Homes. Each was radically different from the other except for the fact that they were both in houses. The first one was in a huge house in Lynnwood, owned and run by two Phillipino gentlemen and their families. It almost seemed like a full Assisted Living facility, it was so clean and professional and organized. The second was at a much smaller house in Bellevue. While in some ways it was more homey than the first, it also seemed shabbier and the couple who owned it didn't seem quite as dedicated. Since Dad seems to prefer a male caregiver, we discussed whether they would have to hire another caregiver to accomodate Dad, which would drive up the price considerably. Even without that, they were much more expensive than the first, bigger house, leaving us confused. I guess the only way to get a better idea of what prices are normal is to visit a lot more places. Leaving me to conclude that this is going to be tougher, and take much more time, than I originally thought!