A Big Help.

I'd like to take a minute to talk about a website that I find incredibly information-packed and helpful when I'm helping a new or stressed out caregiver who needs support and resources.

The Family Caregiver Alliance, found at the following link,
http://www.caregiver.org/caregiver/jsp/home.jsp
is a national organization founded in 1977 to support families providing long-term care at home.  A small group of families and community leaders in San Francisco came together to see if they could create support services for caregivers struggling to provide long-term care for someone who didn't fit into traditional health systems.  Their goal was to address common challenges such as isolation, lack of information and resources, depression and burn out.  Although begun in Californis, the FCA now has programs and information for the entire nation.

One of the special things about their site is that they have a state-specific page that lists not only what resources are available on the city, county, and state level, but also what is available in that state on a national level.  Since caregivers are everywhere, in every state, now, I have found it to be so helpful to either refer them to this site, or to copy and paste entire state pages on emails I send to them.  I have found this to be one of the single most helpful and reassuring information locus for the people I talk to.

I just wanted to give this site a shout-out, and I also wanted to make my readers aware of it, in case they didn't already know.  If you don't happen to need information or support, you may know someone who does, so give them this site; it could be the best help you could give them.


 Don't forget to vote!  I'm on page 1 if you search alphabetically.
http://www.healthline.com/health/best-health-blogs-contest

Blogs, blogs, blogs.

http://www.healthline.com/health/best-health-blogs-contest
Search alphabetically for 3 Years and 13 Dumpsters - Vote!


I've been looking through some of the other blogs that are competing for Best of 2012 and finding some interesting stuff. Some of the blogs are huge, run by larger organizations perhaps, or have been around long enough to become authorities and money-makers. Some blogs are smaller, like mine, started by someone who just had something to share, or someone who had had enough and wasn't going to take it anymore and wanted to talk about it. It's heartening to see people sending their little voices out into the dark, not knowing if they'll be heard, but trying to make a difference anyway.


There are diet blogs, and blogs about pregnancy and parenting. There are blogs for aging, for exercising, and for mental health... and there are, of course, blogs for various illnesses and syndromes. I've been a little shocked and surprised by how many there are about Rheumatoid Arthritis, which is the chronic pain condition that I struggle with and write about occasionally, especially as it impacts my caregiving. It seems that more and more people, often women, are being diagnosed with this terrible disease, and are fighting back the only way they can, through the written word and over the internet.


I'm glad to see they have a forum, and I'm fascinated by what they have to say and how it compares to what I experience. It strikes me as a little funny, though, that I could actually have TWO different blogs out there for the two big things I have experience in - dementia and dysfunctional joints! Maybe I'll start the second one later; I'm a little occupied with the dementia stuff, as it is now! I'm pretty proud of the information and support I've been able to provide with my blog, and so honored that anyone has found it to be of use.


While it makes me a little sad that so many people have such terrible and long-term challenges that they have to start a whole blog as a way to find and provide information and support, it is encouraging that the days of not being able to find someone who understood what you were going through - whatever that might be - are largely gone. So here's to the bloggers, who get their message out there, because the need for information, compassion, and help only seems to be growing.

And thank you, to everyone who is spending their valuable time voting for me, because I'd really love to win this contest!

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Vote for Me!

Happy, happy news! My blog has been nominated by Healthline.com editors for their "Best Health Blog of 2012" contest. I can't tell you how excited I am. I'm facing heavy competition from some big blogs, but I'd love to give it a good try at winning. These are blogs about all kinds of health issues, not just for dementia, so competition is stiff!


Please vote for me, early and often. Go tohttp://www.healthline.com/health/best-health-blogs-contest ,search for my blog alphabetically, 3 Years and 13 Dumpsters, and vote. You can also click on the link embedded on my blog. One vote a day per person is allowed; voting ends February 15. Please spread the word, and vote as often as you can.


Just the thought of being in the contest is amazing, but the thought of winning and getting my blog out there to help more people is even better. Please help me to do this.

Peace.

Every year I swear I'm not going to get caught up in holiday stress, and, for the most part, I succeed. I try to buy gifts throughout the year, package and ship gifts, write up and send cards, buy and decorate the tree, and make cookies reasonably early in December, and this year I managed it. With every thing else I've had on my plate, though, I feel a little tired and put through the wringer; and I haven't set foot in a mall since late November! We don't even have any parties to go to, either. Is it that life is generally busy enough that adding the extra duties of the holidays overloads the system? Maybe. No matter how hard I try, I always end up feeling a little overwhelmed.


I think part of it is an underlying sadness that comes with knowing that no matter how lovely your holidays can be, they will still be without people special to you. It's not something I think about consciously or notice on a daily basis, but it still wears on me a little bit. Combined with the manic capitalism and the message that if you're not loved and don't have family, you're not part of the magic, it all gets a bit tough. With this melancholy and everything else holiday and non-holiday that I've been racing to finish, there've been a few difficult moments.


I made Dad's favorite cookies and took part of a day last week to bring them over to him. I also had some gift cards for his caregivers to thank them for all their hard work and care of Dad, which they really appreciated. The visit and gifts were something to check off on my to-do list, but surprisingly, I spent a peaceful and calm half-hour with Dad as he alternately snoozed and looked at me. It was actually really nice to sit there quietly, with no Christmas carols blaring, no pile of things needing finishing at home, and nowhere to be just then but sitting with my Dad. It was quite lovely and just what I needed.


I guess we just have to be as aware as possible when this time of year rolls around, and get through it the best we can. I don't really have any conclusions or advice, but I appreciate being able to write it all down and send it out there. Thank you.


I do have one thing to say, and that is, if there was ever a time to thank you're loved one's caregivers, this is it. Show them how much you appreciate the love and care they provide every day. Gift cards or tips are a great idea, just make sure you check the tipping policy of the facility where your loved one lives; caregivers might be restricted from accepting gifts. What better way to show your appreciation, though, than a thoughtful thank you at this time of year!

Joy for the Holidays.

Well, it's that time of year again - the holidays. I'm always a little melancholy and nostalgic around this time about my parents and the ways we used to celebrate, but every year takes away more of the sadness and regret and I enjoy the ways my husband and I and our friends now observe the holidays. I look around, however, and I can see how grief and society and expectations can make it so hard to feel any kind of joy when you're dealing with illness or death.


Facilitating for the Bereavement group this year really made me aware how difficult this time of year can be for people who have recently lost a loved one or who are caring for one. Everything that people once enjoyed and counted on and looked forward to every year changes, and the pressure to be happy and enjoying the holidays while dealing with fatigue, grief, and stress can be crushing.


I remember what that was like just after my mom died, and again when my Father's illness became really bad, but over time my nostalgia has become gentle and faded and easier to bear and I can feel a little joy again as this time of year approaches. I just want to say to everyone feeling grief this month, that it will get a little better, although it might not seem like it now. Give it time, and the holidays will come to mean something else just as special, if not exactly the same.


I can't have my dad back for the holidays, but I can enjoy making the special cookies he likes, bringing them over to his home, and watching him take a bite of one. I can see him enjoy the taste of peanut butter and Hershey's kisses, even though he may not remember my mom making them, or the fact that they were his favorite. I won't be with him for Christmas day, but we'll go see him the day before or the day after and sit with him for a while, and I will feel grateful that he's still around, and that I found a place he likes where the people love him and care for him. And on Christmas day, my husband and I will take it easy and relax and eat and watch tv and make our own special holiday, that isn't the same as the ones I used to have, but which are just as good.


If there's anyone reading who has not gone through grief or the burdens of caregiving this year, but know someone who has, I urge you to reach out to that person. You don't have to do anything special, just let them know you're there to listen or help in any way you can. Bring over some cookies or one night's worth of dinner, and then eat it with your friend. If you have some time, offer to look after their caree for a few hours so they can have a break, or you could also offer to pay for a half day of adult day care. There are so many ways you could bring joy to someone in pain, and they don't have to cost a thing, nor do you have to brave the mall.


I have, over a long period of time, been able to find a certain joy in the holidays, despite the hard things that have tried to interfere. Whether you are grieving a loved one, or tired from giving 24-hour care, or sad that your spouse or parent is suffering from illness or dementia...take care of yourself, and take some time for yourself, and don't worry about crappy, unrealistic holiday expectations. But do try to find a little bit of joy, something about which you can be grateful or happy or that brings you just a moment's worth of pleasure.

Bereavement Support Group

If you live in the Seattle area and have recently lost a loved one, I encourage you to come down to the Swedish Hospital/Providence Hospice Newly Bereaved Support Group on Saturday, December 8th. You don't have to have been involved with Providence or Swedish; anyone is welcome and it's a really great group. The facilitators and fellow attendees are all really supportive. I've seen some great comfort in the group.


This can be a tough time if you've lost someone in the last six months to a year. It can be overwhelming and full of grief; all the feelings can come welling up again no matter how long its been. Traditions must change, expectations are rampant, and sometimes there's just not enough help. Well, there is at this group and we will welcome you.


We meet on the 2nd Saturday of each month from 10-11:30 a.m. at Providence Hospice of Seattle which is located at 425 Pontius Avenue North, third floor, Seattle, WA 98109. (Jointly sponsored by Swedish, Group Health Hospice, and Providence Hospice of Seattle.)
Date/Time:

Second Saturday of each month from 10-11:30 a.m.
Location:

Providence Hospice of Seattle, 425 Pontius Avenue North, Third Floor, Seattle, WA 98109. For further details, please call 206-320-4000.

Read more: http://www.swedish.org/Classes-and-Resources/Bereavement-Support#ixzz2EIs4n8s5

The Real Young Caregivers!

I often make the point that I was relatively young when I entered the world of dementia and caregiving, due to the fact that my father was fairly young when his disease manifested. I was around 33 or 34 when I was faced with the realities of taking over the running of someone else's life as well as providing physical and emotional care. I found it to be quite a burden, not least because it was not something I was expecting to have to do for many more years, during which I would have hopefully learned how to do some of the stuff I was being asked to do. Generally, we are not prepared to have to care for a loved one or parent until later in life; it was a challenge and a steep learning curve to have to do so early and I knew nobody else in my peer group who was going through the same thing.


What many of us don't know is that there is a growing group of even younger caregivers in this country. There is a vulnerable and hidden population of young people, conservatively estimated to exceed 1.4 million children, who provide care for family members who are unable to manage life independently. These include children under 18 who balance school and their home lives while providing the only care their family member will receive due to poverty, lack of medical coverage, and lack of other assistance. I thought I had it bad at 33, trying to balance my responsibilities, but my heart breaks at the thought of these very young, very brave people having to be grown up before their time.


There is an organization based in Florida whose mission has become to spread the word about this hidden population through their website, outreach, and donations.

"The AACY® mission is to increase awareness about the effects on children who provide care for family members who are ill, injured, elderly and/or disabled while fostering the replication of the Caregiving Youth Project model within Florida and the US; to provide direct and indirect support services for caregiving youth and their families; and, to establish the Institute on Youth Caregiving.

AACY® addresses the needs of pre-teens, teens, families, and professionals through education and awareness, research, and direct services. It collaboratively utilizes existing resources locally, regionally, and nationally to effectively recognize and support the vulnerable and valuable role a caregiving youth has within the family, in the health delivery system and in an aging and diverse society. AACY® is expanding its reach through an affiliate network, partnerships and the future establishment of the Caregiving Youth Institute."


I urge you to go to their website during this season of giving and taking care of others at:
http://www.aacy.org/, and donate what you can. You'll be helping a courageous young person who is having to perform above and beyond the call of duty. Spread the word; these kids need our support!

Validity.

Thanksgiving was good! Paul's mom arrived on Wednesday and we had a good time together until Saturday morning. Everyone was civil and behaved beautifully, even when slightly uncomfortable topics were brought up. It was nice. Thursday was a lot of fun; we ate and cooked all day and watched the first season of Downton Abbey, which we had seen but she had not. As usual, a feast that takes three days of planning and buying, and three hours of preparation takes three minutes to eat- but it was good.


I had asked her whether she was willing to go visit my Dad and she was surprisingly enthusiastic about doing so; I think she might have been thinking about it before she came up. I told her I wouldn't be upset is she didn't feel up to it, but she assured me she did and we decided to go on Friday. Friday rolled around and the rain was biblical, but we decided to still make the trip and we headed over around eleven. There was Dad, relaxed on the couch as we walked in, and he actually focused on me as I leaned over him to say hello, his eyes somewhat aware and a pleasant expression on his face. I introduced my mother-in-law and then Paul moved forward to shake his hand with a smile - and the funniest thing happened. Dad didn't want to let go of Paul's hand, he kept grasping it firmly as I sat down next to him, so Paul kept leaning over, grasping Dad's hand back. It was kind of cute.


As we all sat around Dad, with his caregiver and another resident on the couch, we had a great time. Dad didn't really participate in the conversation, and he had his eyes closed part of the time, but he would chuckle when one of us said something funny or the group laughed, like he understood what was going on. Every now and then, he would open his eyes and look at me and smile a little, and it was just so nice. The caregiver told us he had enjoyed his Thanksgiving dinner so much, he wielded his fork by himself, which he had not done for a month or more. Dad always did like his turkey and stuffing! As we left, I looked him in the eye and held his hand and told him I loved him, and it was so lovely to actually feel his attention. We told Paul's mother how rare it was for him to be that active and alert and we all agreed what a nice visit it had been.


Later that night, I felt a little melancholy. Not for any particular thing but just because of the events of the day. It felt almost like I'd been validated, my one parent seen and greeted by my one in-law, our marriage legitimized in some strange way, and as if a big part of my life that so few people see had been witnessed and blessed. Dad had been in such a good mood, it was truly a gift. And later, when Paul's mom told me how much I looked like him -that we had the same coloring and the same eyes - that made me sad, too, but just a little bit. It was just nice to have someone not myself see that and find it important.

A Meeting of In-Laws.

Here we are, approaching the holiday yet again; it seems like this year went by so fast. My mother-in-law is flying up to join my husband and I for Thanksgiving, which I think will be fun, despite the obvious cliches about having in-laws for the holiday! The good thing is that she's staying at a hotel, since we live in a Hobbit house. She'll be coming in on Wednesday, and Paul and I have been cleaning, and de-cluttering, and, today, grocery shopping in preparation. It's only the second time she's been to visit us since we've been together, the first time only a few months after we had moved in together. So the possibility that has been occupying my mind on and off for the last few weeks has never come up before. Should I bring her over to meet my Dad; introduce these two people who are now related by marriage?


It's a quandary. The first time I was married, my Father was still lucid and functional; he knew my husband and my husband's family and things were more or less the way they should be between in-laws. Now, though, I have, in essence, no parents, so the meeting of in-laws was never an issue when Paul and I got engaged. Since she's going to be here now, however, and I'd like to pay a visit to Dad over the weekend, the possibility exists that the in-laws could meet! More or less.


I'm trying to decide whether to even ask her, because I know she's feeling a little sad right now about some other friends she has that are suffering from dementia, and I don't want her to feel that I would be hurt if she declined the chance to meet Dad; and I really wouldn't! The problem is that, even when you reassure people you don't mind either way, they always think you do, and I don't want her to agree to go when she really would rather not. So there is my quandary. Whether or not to even ask her if she'd like to meet Dad, and how I would feel about it if we all trooped over there and sat around Dad while he snoozed, pretending this was normal. Which it's not.


I have to admit that there's a little part of me that would like to introduce her to my Dad, if only so that she could meet and see the person I talk so much about, whose illness has shaped my life in so many interesting ways. I can't deny that there is a part of me that would like to pretend its a meeting of in-laws, just like every other meeting of in-laws, even though its not. There's a big part of me that wishes sometimes that our lives were just like other people's, without the questions and challenges that dementia brings.


I guess I'll have to decide pretty soon what I'm going to do. Regardless, I think we'll have a good Thanksgiving, and I hope you all do as well, even if you have quandaries that are on your mind.

Happy Holidays...Or Not.

I was recently involved in a support group for those who have been newly bereaved. Everyone shared stories about who they had lost, and when, and how they were feeling about it; not one person was dry-eyed, not even the facilitators. We all had broken hearts, everyone facing what it was like to have to go on without the person we loved. It seemed to be the general consensus that nothing will ever be the same again; nothing will ever feel quite right again; the world, and we, will be forever changed. At no greater time is that more evident than during the holidays.


It being November, the question was asked about what to do during the upcoming stress-weeks we call the holidays. I remember quite clearly what that first Thanksgiving and Christmas was like without my Mother,to whom the holidays had always been important family events. We managed it by trying to maintain some element of how the holidays had always been for us, tempered with a few new activities, a few compromises. For Thanksgiving, we had dinner with the family of a good friend from Church; we still had the standard food and togetherness, but it wasn't at home, created by my Mom as it always had been. For Christmas, we insisted on a tree and gifts, and I even tried to make the same cookies, although fewer of them; but the day after Christmas, we took a trip to Mexico. (It turned out to be a disaster, but at least we tried!)


In time, I tried to make the holidays for everyone; using some of the old traditions, and creating new ones with my husband, then with my friends after my divorce. It got easier, but it never really stopped being strange. I'm happily married again, and my husband and I do something a little different each year, adding in whatever makes us happy from our pasts and our present. There will always be a sense of change, however, and of a certain alienation between how things were and how things are. We just manage as best we can.


The consensus during the group on how to deal with the holidays was, most importantly, be prepared. Don't let the holidays sneak up on you, make some sort of plan. But also, things won't be the same, so don't feel like you have to try to make them that way. Think of new traditions, new plans; don't hesitate to make the celebration smaller and quieter, or not have one at all. Don't overcommit yourself, but try not to be alone. Above all these things, do what you need to do for yourself and take care. Above all - take care.

Pondering...

I went to see Dad this week, the day before Halloween, and I almost brought a trick or treat-sized candy bar in honor of the holiday! (I thought they might disapprove due to nutritional reasons, however!) As is often the case, two of the caregivers, both young men, were in the living room of Dad's House, watching tv and surfing the Internet. They are all nice men, and I think they do a fine job of caring for their charges, but as I walk down the hall to Dad's room,snoozing in his recliner chair like he usually is when I visit, I ponder.

I usually come by in the early afternoon, an hour or two after lunch is served to my Dad and the other residents, and I know that Dad gets drowsy in the afternoon, especially after his meal(don't we all!), but still, how much time do they allow him to spend in his recliner during the day? And that's the problem; I just don't know. I wonder if his caregivers could, or even should, be doing more to engage him, or if they're just leaving him to sleep the rest of his life away.

Granted, I don't think Dad is much for physical activity these days; they told me last time I visited that he didn't seem to want to walk much anymore. But couldn't they be talking to him, or encouraging him to come out into the living room with them? Or would he just end up snoozing on the living room couch instead of his recliner. And I have to ask myself, am I wondering about this because I'm worried about Dad's wellbeing, or because I feel guilty that he's here at all.

I suspect it's a little bit of both, since I know he's getting much better care here than he would with me. Someone asked me not long ago whether I still feel guilt about whether I'm doing the right thing by having Dad here, or whether I think about it at all, and I told her that I never really stop thinking about it and feeling slightly bad about resigning his care to other people, even though I know its for the best. I don't think anyone who has had to surrender care of their loved one to someone else ever really stops thinking about their choice, or wonders whether it was the right one. So as I sit here next to Dad, silently breathing with him, I know I'll probably always ponder about what the caregivers are doing, and whether it'll ever be enough.

Halloween Memories.

It's Halloween, one of my most favorite holidays, and it always makes me think about both my Mom and my Dad. I used to love to dress up and every year, months in advance, I would decide what I wanted to be and my Mother would make my costume. It was pretty amazing now that I think about it - she was very creative and could put together most of the costumes I asked for. Granted, I usually wanted to be something like a gypsy or Indian princess, or something, but it was still pretty fantastic. I used to love the way Halloween let you be different than you were; you could be anything or anyone you could imagine yourself being. In Third grade I was Wonder Woman, complete with eagle-covered, red bustier, bracelets and lasso. It was great - god, I loved that costume! One year she transformed my sister into Princess Leia with a silky white, seventies-style dress she had, a silver belt, and even the two hair rolls.


Mom actually loved Halloween, every year for dinner, she made hotdogs and her special donuts, with apple cider. She would make sure I got my costume on, including the layers of tights, long sleeve shirt and even jacket, that no kid wants to wear, but which every mom insists on, because for heaven's sake, its cold out there! My Mom was very petite, about 5 feet tall, with little hands and feet. She was so small, and she loved Halloween(and candy) so much that she would dress up, making sure to cover her face and hands, and go trick or treating herself! Occasionally, Dad and I would see her going from house to house and he would never admit that it was her, even though I was sure it was. It was just one of the funny things she did.


Every year, I would wait for my Dad to get home, and he would take me and my best friend out trick or treating. We lived in a neighborhood on a really steep hill, and we would gradually make our way up the hill, stopping at each house. It was a special thing that we did together, something that didn't happen often since he was usually so busy with work and other things. I think Dad really enjoyed taking me out and seeing me knock on each door while he waited at the end of the driveway, and I knew that for at least that one night the dark moods and depression and disappointment he felt so often through the rest of the year would be banished and we would have fun, and connect.


When my stepdaughter was little, I loved to take her trick or treating every year. We had so much fun and it was a way for me to connect with my Father and the fun we used to have as we went from door to door, saying the traditional words to fill my bag with candy. My mother is gone now, and I never miss her more than on these holidays that she made so special. My father is still with me, in body if not in spirit, and although I'll go see him on Halloween to bring him some little candy bars, the man who used to keep me safe in the darkness as we flitted from house to house is gone.


I have complicated and sometimes ambivalent feelings about my childhood and my parents; things were often very dark and confusing for us. But I'm so glad to still possess these moments of gladness and fun, these memories of how my parents tried to be there for me, in ways as simple as making a costume and taking a little girl trick or treating.

A Big Thank You.

The past few weeks, I've been looking into who is looking at my site, how often, and where people are coming from, as Blogspot keeps these stats for me, and I've been amazed at what I've found. Traffic is coming from all sorts of places I would never have expected!


I'm getting a lot of visits from people who are finding a link to me thanks to big sites like, Healthline, Caregiving.com and the LBDA site, and I'm grateful for that. A few individuals have recommended my site on some other big health and dementia sites, and that's always nice to see. What really surprised me was finding myself mentioned in a blog belonging to a hospice organization in Santa Fe! They're doing some great work and I'm honored they saw fit to put me on their site.


Even more gratifying, however, is what I'm finding from individuals who are appreciating what I have to say. I just found out that some people have pinned my site and book on Pinterest, which I have to admit I'm largely clueless about, but what an honor! And, of course, people are very kindly linking to me on their blogs or websites, which makes me feel even more that we're all in this together.


Thank you so much for your continued attention and support, and for helping me get my message of hope and caregiver support out into the world a little bit more. You rock!

Generation X.

A few weeks ago, I was once again a guest on Caregiving.com's Saturday webcast, A Caregiver's Journey. My lovely host, Denise, had me tell my story from the beginning; including when I first started taking care of Dad and how it was to be his caregiver, even though he and I didn't have the best relationship. Something she asked me about has been sticking in my head ever since.


I had mentioneI d how young I was when I had to take charge of Dad, only about thirty-three. I went looking for a book or some other form of information to help me out in my grief, but also to help me do a job that usually falls to people much, much older. One usually expects to begin worrying about one's parents and their health at fifty or sixty, when a parent is perhaps seventy or eighty. It isn't all that common yet to have to do it in one's thirties, and all I could find were books and information aimed at the fifty and over crowd! There weren't even any support groups I could find with members in my age group.


I told Denise that this lack of information and support was one reason I had written my book, so that I could share what I learned with other people in my situation. Nobody expected Generation X would have to deal with something like this! I've read a lot of memoirs, books of advice for caregivers, and combinations of the two, but I still have yet to find one that's truly for a younger audience. Unfortunately, since the increased advent of early-onset dementia, it's an audience that will continue to grow. In the past few years, I've talked to more and more people my age who are taking on extreme burdens while still building their own lives.


For the most part, caregiving, in general, is the same the world over, and we all have to deal with the same or similar issues. It's always comforting, though, to feel that you're being understood by someone in the same peer group, someone who understands the specific feelings and issues you feel. I wish I'd had that when it really mattered, although I got through it the best I could. My goal now is to help as many caregivers as I can, especially the younger ones.

Finding the Energy.

My health lately has not been as good as I would like. I've been transitioning between medications, and I feel like the last few months I've really been put through the ringer. (Not unlike Dad after his last surgery!) It's meant I have more pain and less energy and capacity to deal with my own household tasks, interests and needs, let alone for Dad's, but I'm still doing my best to visit as often as I physically can, and, of course, I still perform all of my clerical and managerial duties for him. I think how much harder things would be for me if I was caring for him physically.


When I talk to caregivers I know, I hear more and more often about new physical challenges they are facing due to the almost overwhelming responsibilities they have. When there is too much to be done, too much stress, too much physical and emotional exertion, the body and mind breaks down, and the caregiver burns out. Too accustomed to putting others' needs before their own, caregivers are far, far too susceptible to high blood pressure, diabetes, the flu and colds, and autoimmune diseases like my own. It's becoming a new epidemic.


I know from personal experience how difficult it is just to take care of your own life when you have a chronic medical problem. I also know how difficult it is to take care of yourself and your own life AND someone else's since I did it fully for two years, and do it in a modified fashion now. I know the kind of choices, or lack thereof, that caregivers feel they have, and the compromises they must make and yet I still say these things over and over to the people I counsel.


You must take care of yourself! Who will take care of your charge if you are unable to do so? Your life matters exactly as much as that of your charge! You must find a way to get exercise, eat better, get some respite, get some counseling so you have someone to talk to, do something you love to do, help yourself! There are ways to do this, resources you can call, moments you can steal, even if it means (safely) shutting your charge in their room for a while. They'll survive! But more importantly, so will you.

Caregiving et al.

I sometimes forget that caregiving isn't just confined to the elderly or those with dementia. There are a lot of caregivers who are doing their best for young children or family members with other incurable diseases.

Check out one such blog that I've just added to the top of my blog list; a lovely woman who is caring for her epileptic brother.


Caregivers are everywhere, and they need our help! Get out there and do what you can!

Featured Information.

Check out the 'Featured Information' section on the sidebar! I've been poking around the Interwebs again and I'm re-highlighting some great sites about caregiving and resources for caregivers.

These sites are easy to use, a little busy, but with wonderful information and tons of resources. Check it out!

Comparing Pictures.

There are two pictures hanging on the wall next to the chair where Dad now spends most of his time. The pictures are very similar, both are of my Dad on his birthday, with my sister and I seated on either side of him. The bottom picture was taken when I was about seven or eight and my sister was nine or ten. I have pony tails and bangs and my Father looks young and happy, with a homemade cake on the table in front of him. The top picture was taken years later, when I was seventeen and my sister was nineteen and at college. We look older, my hair is shorter and my face longer, my sister more sophisticated in her appearance. My Father, however, looks almost the same, another homemade cake in front of him, just with more candles.


I visited Dad today to see how he was and to drop off the zucchini bread I made for him. His caregiver pointed me toward his room, indicating that he was snoozing in his chair. When I asked the caregiver how Dad had been, he said that everything was fine, my Dad was eating well and such, but that he was much more wobbly on his feet; moving very uncertainly, and even seeming to prefer sitting down, which is so unlike the Father I knew. I walked back to his room and quietly sat down next to him, as I didn't want to wake him up.


As I sat there, my eyes were drawn to the pictures, which I'm so familiar with, having seen them in our house forever. I compared my sister's two faces, and my two faces, enjoying how young and happy we looked. As I look at Dad in the pictures, however, I can't help but look at this actual face, almost right next to the two photos. In a way, he doesn't really look that much different; his hair is still thick and wavy, although gray, and I've noticed before how his skin is fairly smooth and unlined, a result, I sometimes think, of the lack of worldly stress for the last ten years! And then he woke up, and I couldn't help but see that there were many, many differences.


His face was almost expressionless, eyes dull, cheeks and mouth a little slack. He has a flat affect, in the jargon of dementia. His hair is rumpled and too long, although his face is as clean shaven as always. He twitches periodically now, which looks uncomfortable, and reaches up to scratch his head fairly often. Birthdays no longer matter. As he turned to look at me, his expression didn't really change, although his eyes sharpened a little as he registered the presence of someone else. I smiled and spoke to him and told him I had brought him some zucchini bread, and to my surprise, he repeated the word, zucchini, as if he remembered what that might be or taste like. He smiled a little at the same time.


I spoke to him for a bit and then he dozed off again and I was left with my sadness that my smart, super healthy and active, mechanically capable Father - in the pictures, so happy to have his girls around him, another birthday celebrated - is here quiet, no longer wanting to walk, content to sleep for hours unmoving.

I'm A Webguest!

Once again Caregiving.com was kind enough to ask me to be on their regular Saturday morning webcast about the Caregiver's Journey. This morning I dragged myself out of bed at six o'clock for a seven o'clock start time (ten o'clock Chicago time!) and had a lovely conversation with Denise Brown about how it all started with me and Dad and how life is now.


Denise is such a thoughtful and generous host, who really asks the pertinent questions and she is helping me get my message of caregiver advocacy out there into the inter-sphere!


Thanks, Denise, and everyone please head over to Caregiving.com for information, support, and ideas about how you can help the caregiver or caregivee in your life. Even if you don't know a caregiver, you can help one by donating to the work that Caregiving.com is doing.


I invite you to listen for yourself to how good (or bad) I sound at seven o'clock in the morning!
http://www.blogtalkradio.com/caregiving/2012/09/22/table-talk-joy

Zucchini Memories.

I make, if it is not too arrogant to say it, very good zucchini bread. In fact, the goodness of my bread is well known in my little community and when the end of summer rolls around and zucchinis are available, people start to inquire casually whether I've made any zucchini bread, whether I intend to make any zucchini bread, and whether, if bread does exist, they might have some of it. When I make it, I use the same recipe my mother used, years and years ago. It is said sometimes that when you cook or bake, you're not just creating food, sometimes you're creating memories, which I would have to say can be true.

I like making zucchini bread because it reminds me of my mother. My mother hated to cook but inherited a love of baking from her father, and one of the things she baked every summer, using her home-grown zucchinis, was bread. I'm not the world's biggest fan of the actual zucchini, but I do love z. bread, hers especially. Her bread figures strongly in my summer memories of dinner picnics in parks, the cold slices of bread thickly spread with butter, eaten with some sort of protein and a salad, or something. I just remember it so clearly; and my father loved her bread, too. So I think about her every time I make it.

I usually make a double batch at a time, which means four loaves, and I'm planning to take a loaf over to Dad's home for them to give him as a snack or dessert. I suppose I should be kind and tell them they can give it to all the residents, and I probably will. But something in me wants to say that it's for Dad and Dad only, and that he likes lots of butter on it, just like years ago. I don't know if it will spark the same memories in him that it does in me; or any memories at all, for that matter. He'll probably just enjoy the taste and not think anything at all.

But once again, I'll be the one holding all the memories for the both of us, which is a really hard job. I like to imagine that all of us who give care think several times a week, if not more, that we don't want to be the memory holders anymore - we want our loved ones to remember on their own! A wish that will never happen. We are the ones who have to be two; carrying our own dreams and memories, and those of our loved one. For the rest of my life, I'll be carrying the zucchini bread memories for the both of us. All he has to do now is enjoy the bread part.

Book Report! (It is back to school!)

I just finished Scared Sick by Robin Karr-Morse and Meredith Wiley. It was amazing and so sad. It tracked childhood,in-the-womb, and even generational trauma and it's effects on health later in life. Every physical problem I have can be accounted for physically because of emotional trauma in my childhood and a lot of diseases like obesity, diabetes, high blood pressure, and Alzheimer's and dementia, etc. in mid-life are traced back to these problems.

They also highlight what problems will be caused in our society in the future if we don't identify children being traumatized, abused, and neglected and heal them. We need to address these problems!

Even if you don't have any illnesses, this is a fascinating book and I learned a lot about the autonomic nervous system, the Vagus nerve, and other really interesting brain and nervous system functions. I highly recommend it.

Event!

This woman is amazing! If you are in the area and can go to this, I highly recommend what she has to say and teach.

The Lewy Body Dementia Association and Arbor Terrace present two free seminars in Atlanta, GA (one for Healthcare Professionals and one for Caregivers and Families) designed to help participants understand the progression of Lewy body dementia and associated behavioral changes, as well as equip participants with effective ways to communicate with those affected by the disease.


Presented by:
Teepa Snow, MS, TR/L, TA OTA
Teepa is a nationally recognized dementia care expert and a consultant for Arbor Terrace communities through The Arbor Company. Originally trained as an Occupational Therapist, Teepa has worked at the Alzheimer's Association of Eastern North Carolina, the Duke University, School of Nursing, and the UNC School of Medicare during her more than 30 years in geriatrics. Her presentations are dynamic, interactive and informative.

Date: October 2, 2012

Location: Druid Hills Baptist Church
1085 Ponce de Leon Avenue, NE
Atlanta, GA 30306

Expertise.

When I think about it, it's actually quite funny. I am an expert on a subject (or several small sub-subjects under a subject heading, if you can even say that.) that I never expected to be. I have become well-versed and knowledgeable on the subject of Dementia, and it's sub-headings of Lewy Body, caregiving, the elderly, end of life issues, hospice and palliative care, grief, loss, and bereavement. I don't think it's the kind of thing a little kid says they want to do when they grow up - it's certainly not glamorous, but I think I'm happy to own it.


Whether I'm a guest on a webcast about caregiving, or I'm counseling someone I am struck by how much knowledge I have amassed, how many resources I can put my hands on, and just how much personal experience I've actually had. It's really only the second thing in my life that I've been this well-versed in, this confident in my skill set. It's one of the few things in my life that I've been really, really good at, if that doesn't sound too weird.


I imagine that a lot of my fellow caregivers,family members of dementia-sufferers, and folks who've lost a loved one might feel the same way. I've read several books now written by the spouses or caregivers of people with dementia, and it's a pretty constant theme; the fact that, after the initial shock, they've become an expert in an illness they probably had never heard of, but now could tell you everything about! Once again, not a thing they would probably prefer to know so much about. But they did it because they had to, there was no other choice, in their opinion, and I know how they feel. I bet their charge was thankful that they had someone so strong and knowledgeable on their side.

I can't say I would have chosen this as my field of expertise, it wouldn't have been my first choice in pastimes. It has, however, given me a purpose that has more meaning and importance then many of the careers I could have chosen, and for that, I have to be thankful. Because of my hours of research and study, my experiences with my Father, and the training and mentorship of compassionate experts, I've been able to be of service to families and caregivers. As much work as its been, I can actually say I'm grateful, because if there's one person who needs, deserves, actually, as much help and care as possible, its a caregiver.

The Body's Stories.

I was a guest on a lovely webcast this morning, telling my story of being a caregiver, the rewards and challenges of caring for my Father, and coming to terms with things that he did to me as a child that have affected my adult life. As a result of maintaining my blog, and being asked to participate in the webcast and other publications, and working on my new book, and talking to all the people I've been running into lately who have a caregiving story, the story of being my Father's caregiver and the reality of what I went through and continue to go through is really in the forefront of my mind. And it makes me remember the events from the beginning, and ponder on what a different person I am now, and what, and who, participated in making me the person I am today.

I became a person who was willing to let go of control, and mend my relationship with my Father, and grow emotionally as a person. I wasn't able to do this all on my own, however; I've done much of it with the help of an amazing somatic therapist. I truly don't think caregivers can do the work they do and stay reasonably sane and healthy without at least the help of family and friends, but at best, with a good therapist. I participate in a type of therapeutic bodywork called SPRe, or, Somatic Pattern Recognition, and it has changed my life - for the better.

How many times as a caregiver, have you been triggered by something your loved one did or said, that probably wouldn't trigger a professional caregiver; and felt your guts grow upset and acid? How many times have you felt anger and resentment that you are giving so much time and energy and care to a parent who didn't really care for you as a child; and felt your back go out? How many times have you watched other family members leave the work to you, or refuse to visit your loved one, or maybe criticize the care you're giving the one time you show up; and felt your jaw tighten and crack so you didn't say the hurt words you wanted to say? All of these things happened to me, they were part of my body's stories, along with a lot of other unpleasant and painful holding patterns, both emotional and physical.

We all keep traumatic or painful events locked up in our body's tissues, so that when a situation duplicates what we've experienced before, that somatic dysfunction comes out as pain, or holding, or weakness. We keep these same emotional tangles in our minds; old belief systems and patterns, things other have told us or we've told ourselves, old stories that keep us from moving forward and discovering something new. These are the body's stories and it is up to us to stop ignoring and stuffing them down, listen to them with respect, and help them heal.

I had plenty of these physical issues, emotional patterns, and family trauma, and I began working with them before I had to care for my Dad because I wanted to do something differently in my life - I wanted to get rid of old patterns, find out where they were from, and then start new. My therapist, Jill Ableson, began to help me do exactly that, by working with my body and my emotional state simultaneously, healing me from the inside out.

When the time came to care for my Father, she helped me navigate the emotional minefield of caring for a man who never cared for me. She helped me learn how not to be triggered by his behavior and words, and she helped me learn how to let go of trying to control others and their behaviors, teaching me new ways to be in my body and new emotional ways of coping. Most importantly, she helped me not to disappear into my old patterns and ways of being so I could be the healthiest person for myself and the healthiest caregiver for Dad.

I firmly believe that every caregiver needs some sort of therapeutic support, because even without old and outdated family ties and patterns and ways of being, this would be a tough job; its only made more difficult by being family. You need someone who understands and can give you the necessary tools to create something new for yourself and often for your family. I don't believe that you can separate the mind and the body; each must be held, listened to, and changed together for true healing to happen. I am grateful every day for what SPRe has brought into my life, and how it has changed me for the better. You don't have to suffer emotional and physical pain, especially when it is worsened by caring for another. There are ways to heal your body's old stories so that there is room for new, brighter and more functional ones.

www.sprebodywork.com for more information.

Another Honor!

I submitted a story recently to Caregiving.com in hopes of having it published in their latest collection of essays and artwork by caregivers. The theme of the collection was Forgiveness, and I was thrilled and honored to have it accepted and published!

In addition, I will be a guest on a live web discussion with the founder of Caregiving.com. I'm so excited and grateful for this opportunity! All details are below, please tune in!


"The proceeds of our book sale go toward our CareGifters program, which funds caregiving solutions, one family caregiver at a time.

The cost of the ebook is $5. You can ask family members and friends to purchase their copies here: http://www.caregiving.com/store/products/caregifters-book-series-forgiveness-2/.

The print version of the book is also available. You can purchase the print book here: http://www.caregiving.com/store/products/caregifters-book-series-forgiveness/

And, please be sure to rate and review the book; we'd love to know what you think. Just go here to share your feedback: http://www.lulu.com/spotlight/caregifters

Trish, who compiled, created and edited the book, will be my guest on Your Caregiving Journey on Thursday at 11 a.m. ET. We'll be joined by two of the book's contributors, Kathy and Joy. You can listen to our discussion here: http://www.blogtalkradio.com/caregiving."

Surgery and Dementia. Bad?

Here's another great post from the blog www.alzheimersreadingroom.com. They have some really great information and his stories are thought-provoking. This one in particular is an issue I've been pondering lately - the effect of anesthesia, hospital stays, and surgery on dementia patients. Read away!

http://www.alzheimersreadingroom.com/?utm_source=Alzheimer%27s+Reading+Room+August+21+Update+&utm_campaign=Alzheimer%27s+Reading+Room+August++21+Email+Update+&utm_medium=email


My Dad had surgery for an infected boil three years ago. I happened to be out of town for the surgery and the short hospital stay, but I was able to come see him about a week after the surgery. He looked pale and drained and flat, somehow and as if he was even more out of it than normal. I remember thinking to myself, "Boy, he looks like he's been through the ringer." I could tell that the surgery had really taken it out of him, and he doesn't have that much left to take - he can't spare anything!


A year and a half ago, his caregiver found a double hernia which was making him uncomfortable so we took him to the doctor, who scheduled a surgery, outpatient, to take care of it. As Dad was in the Recovery Room, he looked bad, of course, and I didn't think much of it, but, when I saw him a few days later, that same feeling struck me. I could see that he had lost even more ground, that he wasn't the same person that he was even a few days ago, and that once again, the surgery had taken something out of him.


I made the connection at the time, that it was the surgeries and illnesses, of course, but it wasn't until my research lately into the effects of surgery and anesthesia on LewyBody sufferers that I really realized what had happened to him. It has been shown how badly certain anti-psychotic drugs, anesthesia drugs, and the surgical process can affect LBD - in some cases drastically. Sufferers can come out of surgery paralyzed, rigid muscularly, and with even more mental compromising. It's not a good thing and if I'd known that, I may have made different choices about Dad's surgeries, although in both cases it was kind of necessary. Have you seen something like this? Before having any procedures, look at the information and then make your choices!

Book Review!

I just read a book called The Good Caregiver, by Robert L. Kane, MD. It wasn't bad, it had all the standard information that books like this have, including a quick chapter on how to avoid caregiver burnout.

It had some stories from caregivers and their experiences with the medical world, caregiving, and the disease which were entertaining and important. There was some information on medications and their effects, some legal information, and some housing information. Nothing I've not found before in a, frankly, more engaging format.

This might be a good book to give someone who's curious about what you're going through, or someone who sees it happening in their life in a few years. It's kind of Caregiving-lite.

Featuring...!

I have a link to this site on my sidebar, but they're doing some great work, so I thought I'd feature them. Their new CareGifters program is such a great idea: caregivers write in with challenges that they are facing, the site will choose a caregiver and give them money to try to help resolve one or more of the challenges. They raise money through donations, but they also invite visitors to the site to send in essays about their experiences. These essays are made into books that are sold to support the program. I think this is such a great idea, so I encourage you to check out the site, which has lots of great blogs and connections, and see what you think!


Caregiving.com features the blogs of family caregivers, weekly words of comforts, free webinars and online support groups. Visitors also can join the site’s Caregiving Happiness Project, which looks to determine if small, daily changes can add happiness during a difficult time in life. A campaign featuring the stories of former family caregivers called You’ll Be Okay debuted on the site in November 2010.

Caregiving.com also holds online events that entertain, encourage and provide an opportunity for a virtual escape. We regularly take breaks–for fall, winter, spring and summer. During our breaks, we take time to reflect on what’s going well in your caregiving role and what needs tweaking. In September, family caregivers of all ages show off their creative side in our Caregiving Art Show. In December, we sponsor a Holiday Progressive Blog Party.

In March 2011, Denise launched CareGifters, an initiative which funds caregiving solutions, one family caregiver at a time. Recipients of CareGifters donations detail their three challenges and then receive money to resolve or minimize at least one of those challenges.

You also can listen to Your Caregiving Journey, our Internet talk show, which delves into discussions about your caregiving role.

About Denise M. Brown, Caregiving.com Owner and Operator
Denise M. Brown debuted Caregiving.com in 1996 and launched her first online support group in the fall of 1996. She is the author of five books:

What an Honor!!

I've just been named as one of Healthline.com's 26 Best Blogs of 2012!! I am SO honored, what a great way to be recognized. My goal has always been to share information, empathy, and comfort with other people in a similar situation, especially caregivers, and I'm so pleased to have done that in a small way. Thank you to everyone who visits, reads, and comments - I'm honored to have you!


Here is what http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs had to say about my blog:


"From caregiving to cleaning house, blogger Joy Walker invites readers to join her on the journey that became 3 Years and 13Dumpsters. Moving and fun, this blog combines the joys and trials that occupy the life of a caregiver or family member of a dementia patient.

A blog is only as good as its creator, and this one shines with creativity, talent, and substance. 3 Years and 13 Dumpsters is a gem, complete with comprehensive resources for others seeking support for Lewy Body Dementia and Alzheimer’s caregiving. Join Joy as she learns even more about living, loving, and Lewy Body Dementia."

There are lots of other amazing blogs on this list and I encourage people to visit them for great info and support.

Twenty-Two Years and Counting.

Tomorrow is the twenty-second anniversary of my mother's death, conveniently commemorated every year in Seattle by the festival of SeaFair, or, more specifically, the hydroplane races at the END of SeaFair. A loud, gasoline-lakewater-and beer-soaked explosion of debauchery and testosterone that occurs at one end of Lake Washington on the first Sunday in August. Oh, and don't forget the Blue Angels performance, which I actually kind of like because my Dad loved the planes and the noise they make in your chest as they fly right over where you're standing (but which every commuter in Seattle hates because they mess up the traffic while practicing for three days before the actual celebration). My husband and I hate the whole thing so much that every year we swear we're going to leave town for the duration just to avoid it. Yes... that. Good times.

When I was in High School, I loved SeaFair because we went out there on my friend's boat in the blazing sun and watched the stupid people floating on tiny, deflating rafts get drunk and sunburned. But I stopped liking it the night my Mother died, in our house, with my Sister and I beside her. Hours after the races were done, of course, but never to be forgotten. Although she had deep, angry issues, and problems we were only just becoming aware of, she was also a good mom and wife, and we lost her that night. You just never quite get over a thing like that - and I don't think my Dad ever did. I think a part, a very large part, of him died that night with her. And not just because he loved her so much, although he did. And not because she was his whole psycho-social life, although she was. But also because what he thought his life was going to be, for the next fifty years or so, died with her, and he didn't have the internal resources to deal with that. I think it was just one blow too many, and from that day, he started to withdraw; from work, from us, from life, and finally, from himself.

Unfortunately, that left my Sister and I to struggle on as best we could. We went back to college, picking up our lives again, but without the central planet around which we all orbited. We would never again follow the neat, safe celestial path we had been privileged to follow before. Both our paths would become harder and harder, until mine nearly killed me; and still, my Father sailed serenely further and further into the black, until there was no coming back. The point of no return had been reached and passed. I grieve for that, and for him, but it also makes me very, very angry. There were several times in my life when I could have used the parent I had left, but he just couldn't be there. No matter what has hit me, I have always fought on as best I could, and part of me can neither understand nor condone how he could just give up like that. You can't truly know another person, though, and I will never really know what was between the two of them, nor what happened to him on that heavy, hot night in August, twenty-two years ago.

Here's to you, Pat Jackson, twenty-two years late - gone but not forgotten. We loved you and we miss you, and I hope you're up there somewhere, laughing, and watching the Blue Angels tomorrow.

Something in the Air?

My husband and I have experienced a variety of states, groups, people, and events due to the usual Summer stuff; travel, parties, car shows, time with friends, etc. Yesterday, after one such event, we looked at each other and realized that there was a similar thread that had been running through all of these last few months interactions. All summer, we've been talking to people that are experiencing issues related to family, involving: parent's dementia or other illness and the connected legal, caregiving, emotional issues; housing of elderly parents; death; or struggles with family over inheritance!

One of our extended family members has been struggling to take control over her very ill, yet controlling, Father's affairs. It's been months of trouble and heartache, time and energy. When we visited with her, she had just gotten a Power of Attorney, and later we heard her Father had been assigned to Hospice.

Running into a friend of my husband's, we learned he was in a prolonged and bitter struggle with a brother in regards to the inheritance and money left by the parents. The last parent had just died weeks before, the first within the last year. I could see the incipient tears well up as he talked about it - and I felt such empathy for him, although it was the first time we'd met. He wasn't even being given the time to grieve his losses; it would have to wait for the family struggle to end.

Just yesterday, we were talking to a member of our car club, a lovely woman, with whom I shared some of my work. She disclosed that her brother had taken over mother's house after her death the year before, and was being aggressive and controlling about emptying it out and resolving the inheritance. Adding to the difficulty, her mother's affairs had been left in some disarray, and it was unclear who was in charge. She said sadly that she only wanted her Mother's wishes honored, but was not confident that would happen.

All these stories in the air, these terribly difficult struggles... I know it's all a part of life but it seems to be getting more and more difficult for people. Difficulties that aren't helped by the growing prevalence of dementia, family emotions, controlling people, and unorganized affairs. Can't we all just get along?

While we were initially surprised at the commonality of experiences we were running into, I imagine we'll continue to hear these stories more and more. I'm going to make it my mission to find resources, help, support, and information to share everywhere; after all, we're all going to be in this together.

More Changes.

I've just spoken to my Father's caregiver, who gave me some disturbing news. The nice couple that takes care of Dad - who replaced the last nice couple that took care of Dad - have left. Apparently, they had some sort of emergency and had to go back to the state they moved here from. I have no details, but I'm really not happy about it. It's not easy for Dad to adjust to new things or people, and I can only guess that this is going to be really hard for him.

I felt that Dad really liked the first couple who cared for him, and I could really tell when they left that it affected him. His behavior was different and it seemed as if he missed them; especially their little girl. I don't know exactly what caused them to leave, either, but it doesn't strike me as the hardest job to leave. The hours are crappy, the money isn't great, and the rewards are few. We don't pay our caregivers nearly enough for the jobs we ask them to do.

We ask these people to care for our ill loved ones because we cannot or will not. We ask them to feed, amuse, bathe, and toilet loved ones that can no longer do these things for themselves; and we pay them minimum wage to do it. They work long hours, are run off their feet, and perform boring, repetitive tasks. It's true that bad things, and bad people, happen...but for the most part, these are good people doing a hard job.

I'm so sad for my Dad, that he has to get used to new people again. I'm going to go over there in a day or two and meet them myself - and I'm sure they'll be very nice and competent. I really hope if they're good, however, they stick around for a long time so my Father doesn't have to go through the stress again. Until we treat, and pay, these people how they're worth, however, I won't be surprised at a high turn over. Caregivers do the most important job in the world - caring for our loved ones - and I hope we as a nation finally realize that.

New Events.

There are some great events this week if you are in the Seattle area: check out the Events section on the side bar!

Mood Swings.

This disease, this Lewy Body Dementia, is such a strange thing. It can turn a modest man in to one who pees in plant pots. It can make a woman who never once raised her voice, scream and swear. It can make a kind, patient, loving man into one who threatens and hits and insults his loved ones. What is going on in their brains that makes this happen? What doors are being closed forever, and what doors, never opened and for good reason, are being flung wide? Doctors don't really know yet, we just have to live with the reality of it. I was helping a caller the other day whose spouse had become frighteningly aggressive and angry and physical; the caller was shaken, never having seen this behavior in twenty-five years together! What could I do but just commiserate.

We had to move my Father out of his large facility because he threw a chair and took a swing at on orderly after getting into an altercation with another resident. The over-stimulation and hustle and bustle of the facility was too much for his condition and he snapped. After the episode, the staff watched him all the time, and I think he really felt that; it only made him turn aggressive again and again. We found him a very small, quiet AFH, where he has done quite well, although I was disturbed a few months ago to find out that some of the anger had come back, and he had pushed a chair again. They know how to handle him, though, backing off and giving him some space when necessary, redirecting him and distracting him. Even in his dementia, he hates being managed!

I just finished a really good book by one of the founders of the LBDA about Lewy Body; A Caregiver's Guide to Lewy Body by James Whitworth and his wife. In it, I learned that while Alzheimer's takes away memory and comprehension, Lewy Body may Leave comprehension-it just takes away the brain's ability to interpret data and input and communicate it. This blew me away. For a long time I've thought that some of Dad remained behind his eyes, he just didn't know how to get it out there!

I guess those of us with loved ones impacted by this terrible disease have no choice but to continue to watch these 'mood swings' and try to deal with them as we can. Its sure not easy, and my heart goes out to all the caregivers who live with it so closely. Take heart in the knowledge that your loved one is still in there somewhere; Lewy Body may ravage them horribly, but you'll never lose them completely.

And the Years Go By...

I was just looking over my blog to see what I should move around or change or just what might freshen it up a little and I looked all the way down to where they archive the posts. Each post is filed under the year when it was written, and the years are listed so you can find the post you want. My first post was in July of 2009. Almost exactly three years ago! That just blows me away; I can't believe its been so long that I've been telling my stories, getting out info, and having the great privilege of people paying attention and enjoying my work.

Three years ago my life was completely different. I was still with my ex-boyfriend, about whom I wrote in the book, although things were not going well. I had finished what I thought was the final draft, and I was researching literary agents and sending out proposal letters in the fierce hope that I could get my book published. For me, it was never about being famous or a big signing bonus or anything like that, although admittedly the thought of taking book tours was a wonderful one! All I really wanted was to get the book, and my message, out there.

The message that its okay to not know what you're doing - at all! The forbidden fact that you might not LIKE your parent very much, but that you're taking care of them because its the right thing for you to do. The revolutionary concept that it's okay to take care of yourself first so that you can have something left over to give to your charge. Just the plain reassurance that you're not alone; there are others going through the same thing, and there is help and understanding and compassion out there. I felt that all of these concepts, and more, just needed to be out there; and, thanks to the wonders of self-publishing, they are. However, the blog has turned out to be even better than the book, if possible.

My life now is hugely different: the book is published and wonderful; I'm newly married and happy; Dad is comfortably in what I hope is his final home. Through the blog, I've been able to tell my day-to-day story, not just a moment caught in time. I've also been able to tell Dad's story, and that's almost the most important thing to me. Together, he and I have been on this long journey -- we've forged a relationship I never expected, that has had its rewards, and its not over yet. The support and contact I've gotten through my blog have been a huge help; and the idea that I may have helped someone else in the same situation is a very good one. I'm going to keep on bloggin', and I thank all of you who are sharing my journey!

What On Earth is a Lewy Buddy?

The answer? I am! I can now proudly refer to myself as a Lewy Buddy. What is that, you might ask? I just completed training with the Lewy Body Dementia Association, lbda.org, and I am now qualified to help people who call the organization with questions, or requests for referrals, or just want to talk about this terrible thing that's descended on their families. I'm so excited to be able to share my experiences and my compassion with those people who are just starting out on this journey. It's a true honor. I'm responsible for the whole West!

If you or someone you know needs some info or just a shoulder to cry on, call our number and you'll either reach someone who can help or be asked to leave a message, and someone (maybe me!)will call you back within 24 hours. The service is, of course, free.

Don't keep your grief or questions inside-get some help. That's what we're here for!

Toll-free LBD Caregiver Link – 800.539.9767

Just Being.

I went over to see Dad the other day. I started talking to the couple that is now caring for him; they seem like nice people, although at times they seem a little mystified at the place they now find themselves, which puzzles me because I'm pretty sure they said they'd done this type of work before. Maybe its good to get people who haven't worked with the demented for years and years. Maybe that means they treat their charges more as human beings since they haven't been tired out by the many problems inherent in caring for the elderly and ill. Regardless, they appear to be a nice couple, and they do seem to treat Dad like a regular human being, which I appreciate.

The other day, a friend was telling me about his grandmother, who had dementia about 20 years ago, back before it was as understood as it is now. He said that his Father was embarrassed by his mother and the things she said and did. Years ago, a lot of effort was put into keeping a dementia sufferer 'in the current moment', no matter how disturbed that made the patient, who more often than not, would insist they were in the past, or were someone else. Fortunately, behavioral studies have changed now, and the general belief is to let the demented person be 'whenever' or 'wherever' they seem to be. This was a behavior I insisted on when first dealing with Dad, and something I've made sure about ever since. Our conversation also got me thinking about being embarrassed and I remembered taking Dad out and about when we lived together.

We would go for long walks, out for lunch at our favorite restaurants, through the car wash; any activity that kept Dad interested and entertained. Quite often we interacted with others and I remember feeling at peace with whatever Dad did or said. I never felt embarrassed by him or anything he did; if something strange happened, I would merely tell the waitress or whoever, that he had dementia and thought a little differently, and I never had a problem. I feel good about the fact that I never let embarrassment or humiliation taint our time together - and I always just let Dad be Dad.

As I sit with him and chat with his caregivers, and see how they interact with him, I see the same behavior in them that I always wanted for Dad. I never wanted him to feel on any level that he was doing something wrong and I will always want people around him who take him for who and what he is now, and are okay with that.

The Many Costs of Medications.

This link is to a great article on the cost of medications for arthritis; both in money and emotional well-being. Although not all drugs for common diseases are this expensive, I think the same problem holds true for many. Medications that people desperately need to be able to live their lives are un-affordable. This has become a big problem for seniors on fixed incomes, but as the article relates, anyone can be affected.

http://www.jsonline.com/news/milwaukee/when-the-choice-is-health-or-hearth-k45k7oo-156039825.html

I personally use one of the medications that the article is talking about - a biologic. These drugs are exorbitantly expensive, and since there are not yet any generics the drug companies can charge anything they want - and they do. I used to be way too poor to afford what many experience as life-changing medications so I had to make do with older drugs that weren't as effective, and I got sick often.

When I was finally able to afford one of the fancy drugs, it really DID change my life; my disease went mostly into remission, my pain decreased, and I was able to live a somewhat normal life. I'm fortunate in that my insurance covers most of the costs of these expensive drugs, but I still have to pay some of it. Every time I'm in the pharmacy, the pharmacist does a double-take when ringing me up! These drugs keep me going, however, and I have long wanted to do something to help those people who aren't fortunate enough to be able to afford them. Its appalling that these life-altering meds are not available to everyone.

As more biologic drugs are developed for dementia and Alzheimer's and other terrible illnesses, what will happen to those whose lives could be saved or at least improved? Are we going to continue to allow the drug companies and insurance companies to decide who can have a good life and who can't? I really hope not, although I'm not optimistic.

Mortality.

I may have mentioned before that I have a chronic illness called Rheumatoid Arthritis. I haven't written much about it but I'm going to start writing about it more and more, not only because I feel it really affects my role as Dad's caregiver and that might be something that others are also experiencing, but also because it has really moved itself to the forefront of my life lately. It has really made me start to feel my own mortality, and that's been difficult, especially when placed next to Dad's increasing mortality.

I had a sort of flare up a few months ago, characterized by even more fatigue than I normally feel, some extra pain and stiffness, and some other, minor symptoms. It's been a long time since I had a flare up and I was in denial about it for a while, until my doctor really noticed and put me on a newer medication. Thankfully, the new meds have started to help, very slowly, but I'm still feeling sluggish and a little depressed, which for me, is strange. I'm dealing with the fact that this could get a lot worse in time and I'm struggling.

Having a chronic illness of this type makes being a caregiver, even a part time one like me, more difficult. I'm sure there are many full time caregivers out there who are struggling through their own disease processes to help a loved one with theirs. Everything takes just a little longer, a little more effort, and it may cause some resentment that precious energy and time are being spent on the health and well-being of someone else. I know it has for me. I watch my Father's long slide into old-age and death with pity and sadness;and with the knowledge that once he goes, I'm on the front lines of Life - there will be no one else between me and the same fate.

To all those who are fighting the good fight for your loved ones, while fighting a health fight of your own; you're not alone. Don't forget to take care of your own health first, as hard as that might seem. And don't be ashamed of negative feelings - you're entitled. This is a tough road to walk for anyone, but it was made a little tougher for you.

I'll List You!

I just got a comment from a representative of the Mesothelioma Website, asking me to link to them. Now I know there's some scams and such out there so I have to be careful, but if you've got an organization or site you want me to link to, I'm always happy to do it! I want to get info out there, and if you link to me too, that's a win-win!

This is an amazing article I was able to embed-please read!

Helping Out.

I'm excited - in two weeks I may be doing an online training with the Lewy Body Dementia Organization in order to become one of their phone support people. I've never felt the need to call their help line, but they do have one in case caregivers or family members get overwhelmed while dealing with this terrible disease, or just need some more information. I think it's a great service and I'm excited to potentially be a part of it!

Lord knows caregivers need every little bit of support we can give them, including a shoulder to cry on (through the phone) or the knowledge that it is possible to get through this. I don't have as much direct contact with my Dad as some of these brave people, but I know its a tough road to walk. The organization's website is listed on my blog if you would like some more information or a number to call.

A New Hope?

Well, I guess we'll see if this actually helps... personally I'm not sure if the government is capable of doing anything useful to help with this terrible epidemic.


National Plan to Fight Dementia Released

Yesterday Health and Human Services Secretary Kathleen Sebelius released an ambitious national plan to fight Alzheimer's disease. The plan was called for in the National Alzheimer's Project Act (NAPA), which President Obama signed into law in January 2011. NAPA sets forth five goals, including the development of effective prevention and treatment approaches for Alzheimer's disease and related dementias by 2025.


The National Plan to Address Alzheimer's Disease also includes related dementias like Lewy body dementia, frontotemporal degeneration, vascular dementia and mixed dementias. While the media may only mention Alzheimer's, the law and the National Plan is clearly inclusive of these related disorders, and the impact of this new national plan will ultimately benefit all families dealing with dementia through greater public awareness, increased education of healthcare professionals and increased research funding.


Read the National Plan to Address Alzheimer's Disease. http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf


For more information on the national plan to address Alzheimer's disease, please visit: www.alzheimers.gov.

Sincerely,





The LBDA Team

Lewy Body Dementia Association

www.lbda.org

Stealing Flowers.

Mother's Day is almost over, and I remembered that exactly twice today. Once was on a walk around Green Lake, a popular park in Seattle which boasts a very pedestrian-friendly 3 mile path circling the lake, and a lot of really lovely landscaping and places to hang out. It's a perfect place to people-watch, and Paul and I spend a great deal of time there, exercising our legs and our capacity for sarcastic comments. I realized today that I was seeing a lot of multi-generational family groups out walking and I thought, "Oh, right, Mother's Day", which accounted for the lovely grandmothers and mothers and children together.

May is also the month in which my Mother was born; May 1st to be exact. Her absolute favorite flower was the lilac, which usually bloom around the beginning to middle of May in Seattle. Since every year I strove to surprise her on her birthday with a bouquet of lilacs, I would wait anxiously as May approached, watching the lilac bushes to see if they would bloom in time. The only flaw in the plan was that we had no lilac bushes of our OWN. Every year I had to essentially commit a felony for my Mother, and steal lilacs from a neighbor's trees. I figured it was a victim-less crime, and no one seemed to mind, plus, Mom was thrilled every year to receive the fragrant flowers. (Stealing plants seems to be something I'm genetically inclined to do as I have a distinct memory as a very small child stripping the leaves from a neighbor's bush because they reminded me of cheese. My mother made me take them back and present them to the neighbor.) If they didn't bloom in time for her birthday due to a cold Spring, I would gather her a bunch for Mother's Day. Since childhood, the smell of lilacs remind me of Spring and of my Mother.

My mother has been dead now for over twenty years; the grief has faded and, as I've said, celebrating her birthday and Mother's Day is no longer a big deal. But I can't help but look for the lilacs every year. I have yet to live in a home in my adulthood that boasts a lilac tree, so every year I have continued to steal lilacs blooms from wherever I can find them - although I do try to stay out of people's actual yards, instead clipping a few that overhang the sidewalk, or looking for a bush in a park. Every year I have at least one small sprig in my home to remind me of my Mother, breathing in the sweet, wonderful fragrance. I have a sprig right now on my dressing table that has wilted, and outside, the lilacs are turning brown as Spring turns to Summer. The second time today that I remembered it was Mother's Day was this evening as I walked through our room and caught a last whiff of lilac. It doesn't cause me pain anymore, but it does give me a good memory.

To all of you out there who are lacking a parent during these special times like holidays and birthdays, even if your parent is still alive but lost in dementia - this post is for you. Take a moment to remember something special about you and your parent.

Holidaze.

Mother's Day is coming up and anytime one of these family-oriented holidays comes up it makes me think. My Mother has been dead for twenty-two years now, so its been that long since I've had to think about a nice event or good gift or pretty card for her. I've had other lovely women who have semi-filled that role for me so over the years I've sent things or called or done something to acknowledge them - but its different not to be able to do it for your own Mother. And I miss that around this time of year, but how I feel and respond is pretty straightforward - she's gone, there's nothing to celebrate anymore.

My Father, of course, has no idea when these holidays come around or what they mean anymore. When we were growing up, we made something my Mother called a 'Daddy's Day Book', basically a scrapbook with pictures and all of our accomplishments throughout the year. I found them all tucked away when I cleaned out the house, and it was both good and hard to look through them and remember my Mom's creativity and our delight in making something for Dad. I think about those books every time June and Father's Day rolls around.

It's gotten so I don't really even bother to do acknowledge it with him. Maybe I should, I don't know. In many ways it feels like he's as gone as my Mom, so there's really no point. But it still makes me think, it still makes me remember. I look at all the people I know or follow on Facebook who have a loved one with dementia and I see their day to day struggles. I wonder how they feel each time a 'Parent' day comes on the calendar and whether they bother to still acknowledge it. I guess its a personal choice but one that people who have never experienced this disease in their family have any concept of. I hope they never have to.

Check it out!

Here's a link to a very important story done by NPR. You can listen to it or just read, either way its all about the cost of caregiving and ways the government needs to step in to help all the families doing it on their own!


http://www.npr.org/2012/05/01/151472617/discovering-the-true-cost-of-at-home-caregiving

What's Really Going On In There?

A big WELCOME to all my new followers-please feel free to comment on anything or tell me your story!

We went over to visit Dad yesterday just to see how he was doing and I wanted Paul to meet the couple that were recently hired on as caregivers, just to see what he thought of them. We came in to the kitchen and did all of the introductions. They both seem very nice and competent-apparently they came here from Las Vegas in hopes of living somewhere with a somewhat functioning economy, Las Vegas having yet to recover from the recession. Since we'd had such good weather over the weekend, I asked if Dad had been outside at all, and they were very effusive, telling me that, yes, he'd been for several walks around the property and had sat outside for a bit.

The last time I was there visiting Dad, I could tell that the woman caregiver thought it was odd that I was just sitting quietly with Dad instead of trying to engage him. I explained that neither of us were big talkers, even when he had been more lucid, and that I just enjoyed sitting with him. She seemed to understand this, exclaiming that he seemed to listen very intently in group situations, even though he didn't say much. Talking to her yesterday, she recounted how she had gotten a response from Dad after telling him I was such a gorgeous daughter, and it was obvious I had gotten my good looks from him. Apparently, he laughed at this.

Which just adds to my wondering, exactly how much does he understand? I maintain that there's more going on in that head then he lets on or that other people realize. When he does respond verbally, he tends to say the appropriate word response to what's been said. Maybe some part of his brain recognizes a question as a question, regardless of content, and has a few stock, memorized responses ready to go. I just don't know; I don't even know if he really recognizes me any more, which is hard. I imagine his mental landscape is pretty foggy and dark-I certainly hope its not unpleasant, and I don't think he realizes anymore the horrible thing that's happened to him. No one can really know what goes on in the mind of our loved ones with dementia. I guess all we can do is just keep holding on to the little bit of them that we still see.

Tax Time.

It's that time of year again. Tax time! A season that strikes fear and irritation into the hearts of many. I don't mind tax season so much for myself; I've got a fairly basic set-up, with no deductions and nothing fancy to report. I also do my Father's taxes however, and that's what has gotten me thinking about him today. By 'do' I mean organize, not prepare. I'm not crazy! I organize everything as it comes in the mail, spend time noting medical charges and anything else that might be deductible, and look through his financial records and statements to make sure I have every possible scrap of paper that the accountant might need. Then I take my enormous folder of statements and pension reports, and medical bills, and I take it in to our long-suffering accountant, who then puts everything together and makes up Dad's return. It just makes me think about Dad and all the ways I'm now totally in charge of someone else's life. It's a little odd to be signing your name to someone else's tax return. It's also a little odd to sign your name to someone else's financial documents, or to be the named Social Security Payee, responsible for money sent from the government that they're going to want to know has been spent properly! It really makes you think about being responsible, and how sad it is that you have to do it at all. It reminds me of something that happened while I was still living with Dad-one of our many adventures. Dad was still somewhat lucid and knew that an election was coming up. He wanted to go vote, so I took him up to the elementary school where he was registered(this was before everyone was sending in their ballots), and helped sign him in. As we waited for an open booth, I pondered a few things: whether it was even legal for me to send a man to vote who had dementia; how long the prison sentence was for voter fraud; and also, did he even know who to vote for? I nudged him and asked, soto voce, if he had an idea of which way to vote. He showed me one of his little notebooks, in which he had jotted down some names and issues. I figured that was good enough but suggested he try to keep someone else, like a voting official, from seeing it. Off he went to vote, taking a little extra time, but doing just fine. He only needed my help to figure out in which box to drop the ballot. I realize we're just talking about voting here, but it made me happy to be able to do this for him, probably for the last time. For all the government's intents and purposes, Dad still exists as a tax-paying, social-security-drawing, voting member of society. It doesn't really realize that someone else is actually doing all of that on Dad's behalf. I guess it doesn't really matter to them as long as it happens. But it's just one more thing that makes our lives different from other people's, and I can't help but think about it.

From the LewyBody Organization...

Most people with dementia undergo behavioral changes during the course of the disease. They may become anxious or repeat the same question or activity over and over. The unpredictability of these changes can be stressful for caregivers. As the disease progresses, your loved one's behavior may seem inappropriate, childlike or impulsive. Anticipating behavioral changes and understanding the causes can help you deal with them more effectively.

What is the behavior telling you?
Persons with dementia often lose their ability to express themselves before they lose their ability to understand. Behavior becomes a means of communication. Ask yourself why your loved one is behaving this way. Then you can take steps to manage the behavior.

Tips for managing behavioral changes
When your loved one exhibits an undesirable behavior, your reaction may be to try to stop or change the behavior. But remember, you can't reason with or teach new skills to a person with dementia. Instead, try to decrease the intensity or frequency of the behavior. Consider these approaches:

Remember that your loved one isn't acting this way on purpose. Try not to get angry or upset or take it personally.
Speak calmly and softly to the person.
If the behavior is aggressive, back away. Give your loved one space. Then calmly approach him or her. Don't argue.
Consider the potential cause of the behavior. Is your loved one tired, hungry, in pain, frustrated, lonely, bored? Could it be a side effect of medication?
Respond to the emotion, not the behavior. If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations.

If a behavior continues, keep a journal to identify patterns (time of day and possible triggering events), and this may provide clues regarding ways to intervene.

Validate, Join and Distract
One effective method for managing a difficult or annoying behavior is to validate, join and distract. For example, if your loved one constantly heads to the door asking to go home, efforts to try to distract him may not work. By simply interrupting the behavior, you don't gain an understanding of why the behavior is occurring.

A more effective approach is to try to validate the emotion that you think is underlying the behavior. For example, say something like, "I know you miss your family." Then sit down and look through family photo albums. This way, you haven't just distracted the person but you've first joined in and validated the person's emotions. Validating, joining and then using distraction may be most effective with people who are in the early to middle stages of the disease.

You know your loved one best
Let your knowledge of your loved one who has dementia guide your choices for distractions. For example, if she was a homemaker, stirring cookie dough or folding laundry may be meaningful activities. Responding to challenging behaviors takes creative solutions, patience and a willingness to be flexible.

Continental Divide.

There is a line in Tolstoy's Anna Karenina, that says, "Happy families are all alike..." I believe the next line is something about how they are alike, and then how goes on to talk about unhappy families. I don't care what your family looks like, whether you have one sibling or six, step-parents or not, lots of Aunts and Uncles, or not; in my experience, ALL families are alike in at least one peculiar way-how each member acts and reacts within the family group.

Compare a hundred families who are having a crisis - in each there will be similarities in member's behaviors. There is usually one member who jumps in responsibly and takes care of as much as possible, even to exhaustion. There is one member who does as little as possible, who is just too busy, or tired, or whatever. There will be one member in denial about the crisis, another who is angry and trying to find someone to blame. It goes on and on. Granted, a smaller family will have fewer people to take on these roles, but even in one of only two siblings, there's usually at least a doer, and a non-doer.

This is a wildly subjective study, of course, but I've had a lot of time and chances to observe how families react to a crisis like illness or dementia. I've been spending some time on Facebook, observing a group I belong to for people with dementia in their lives. Its a place to complain, get comfort or info, etc. The stories on there would break your heart, and they're all real! Reading these posts, noting as people talk about their families and how each member has reacted to the crisis, just adds weight to my observation. There's a caretaker, giving their life to care for the family member; then, there's the sibling who can't be bothered, or who just checks out altogether; and often, there's a sibling who's in denial, making the caregiver's life more difficult through their words and actions.

I really wish this weren't the case-I wish families were not alike in this regard. But it seems family patterns are common and ingrained in us all. My wish for all families suffering through the horrors of dementia is to talk about it, face up to it, help each other out. A burden shared is a burden halved.