Monday, July 30, 2012

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.

Monday, July 23, 2012

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!

Thursday, July 12, 2012

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.