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.