Wednesday, November 26, 2014

Holiday Awareness.

Yahoo had this article listed on their front page news feed and I thought it was so important to post here. It states that getting the family together for the holidays is a great opportunity to look for physical and mental changes in your older family members.

"The holidays aren’t just an occasion to give thanks and eat until you pop — they’re also an opportunity to check up on the physical and mental well-being of older family members. More than half of older adults with diagnosable dementia have never seen a doctor about memory or thinking concerns."

Don't jump on every little mental difference you see, and don't freak out if your Grandpa forgets your name for a moment; cognitive ability reduction is common as we age.

"Just because Dad forgets the pumpkin pie (for the second year in a row) doesn’t, on its own, suggest that he has Alzheimer’s disease. Chapman explains that certain mental processes, such as memory and thought processing speed, inevitably decline with age. 'Dementia, versus common memory loss, involves two symptoms, with memory problems being one of them,' says Dr. Rebhun, who trains other physicians in how to evaluate patients for dementia. Often the first signs include problems with decision-making and changes in how people make decisions, Chapman explains. Your loved one may not use good judgment or sound logic. For example, your mother might forget to put sugar in the cheesecake, so she sprinkles it on top after the dessert is baked."

And don't feel that you have to deal with it right that moment, or bring it up at the dinner table. Make your observations, check with other family members, and then arrange to have a talk with the affected family member at another time, in a quiet location. Bring another family member for support.

This is a great and timely article, and a good way to keep looking out for our families.

Monday, November 24, 2014

Holiday Care.

Its that time of year again - I can hardly believe it! Its not that the holidays sneak up on me - all you have to do is watch television to know they're here - but I guess I forget everything that's involved with them. All the stuff one has to think about and plan and worry about. This year, as in past years, I'm going to urge caregivers and the newly bereaved NOT to think about, plan, and worry about the holidays. Or at least TRY not to.

Last week was the final session of the Grief group I was co-facilitating with my friend Ross, who is an amazing counselor and friend. So many of the participants were fairly new to their loss and hadn't experienced a major holiday without them, so I took the fortuitous timing and made sure we talked about the week to come - this week. I told them how difficult holidays can be without loved ones and I urged them to really give it some thought, and be mindful about how they celebrated this year.

First of all, I support not celebrating at all! If you're not up to it, don't try to maintain the old traditions and things your family always did. Give it a year before you decide what traditions you want to keep or get rid of, and spend this year resting and taking it easy and not doing much. Go to a movie with a friend, or have a quiet dinner with close family, or go out of town. Several of the recently bereaved people I know are leaving on a jet plane for warmer climes.

If you absolutely want to celebrate in the ways you always have, get other people to help you...a lot! Go potluck or order dinner from one of the fine, natural grocery stores in the area. (PCC does a great Thanksgiving!) Wherever you are in the country, I'm sure you have a restaurant or grocery store that does a ready-made dinner. Have everyone bring a dish, while you supply the decorated table - something like that. Above all, take it easy, be good to yourselves.

I'm going to go visit Dad on Wednesday afternoon; check in with him, read a few pages, rub lotion into his hands, maybe. But I won't see him on Thanksgiving day. I know they always serve a great dinner at the Adult Family Home, so I'm not worried that Dad won't have the good seasonal food. I'll spend the day with my husband, relaxing and eating the chicken (we hate turkey), stuffing and everything else.

I'll serve the food in my mother's lovely serving dishes and think back to all the Thanksgiving dinners we shared around the table at our old house: lace tablecloth on the table; Grandma's white and blue china; the cut glass pineapple bowls for pickles and cranberry sauce; all of the good food, including green bean casserole, which I never learned to like. ( I did grow to like gravy, though). I'll think about my parents and my grandparents playing cutthroat pinochle after dinner while my sister and I read. And I'll give thanks for everything wonderful I have now.

Saturday, November 15, 2014

Hand to Heart.

I went to see Dad this week, sitting next to him on his bed as he dozed away under his blanket. He was wearing one of the new pullover shirts I got him and looked good- much better than the peach colored velour sweatshirt they've been dressing him in!

Towards the end of my visit, he surfaced from whatever dream world he'd been inhabiting and looked at me. I smiled at him and said hello, and got a faint smile in return. Last time I visited, he woke up and when I said hello, he actually said "Hello!" back. I'm not sure who was more surprised - him or me. Either way it was nice to hear.

No hello this time, but he did look at me. I grabbed the extra - special hand lotion I bought for him, took off my wedding rings and begin to gently massage his hands with the lotion. When I looked up at his face, his eyes were closed and his face relaxed and he seemed to be enjoying it so I kept on.

I've written before about my father's hands; how strong and capable they were, always rough with ground in dirt and oil, no matter how hard he scrubbed, and banged up from whatever motor or toilet he'd been working on. As I rubbed his hands, stretching out the fingers that have become contracted and tight and working on his wrists and lower arms,  I noticed how smooth and soft his hands were. Mine were callused in comparison!

It just brought home to me the fact that he does nothing- rarely using his hands or his body
in any way. The disease has stolen that from him. Of course his hands would be soft - there are no more engines to be fixed. All he touches now is the soft blanket I got him last Christmas. It made me a little sad but as I was finishing up something happened that helped me a great deal.

I gently put his hand down in his lap and smiled at him as I rubbed the rest of the lotion into my own hands. He smiled back at me with a smile of such singular sweetness and brightness that it surprised me - I felt he was looking directly AT me. It was a true smile,  Maybe a thank you for the meeting of our hands. And I drove home feeling not too bad after all.

Monday, November 10, 2014

Books, Livres, Libros, Buch!

I’m always on the lookout for the latest book about caregiving, Lewy Body dementia, any other dementia, or end of life in an effort to find something good I can recommend to my caregivers. Following are three of the latest I’ve read.

Activities to Do with Your Parent Who Has Alzheimer’s Dementia, Judith A. Levy: I was contacted by this author and asked to read her book so I ordered it and read it. Levy cared for her mother with Alzheimer’s so she knows what she’s talking about, and she inserts little stories about her experiences. She has really focused on interacting with the care receiver, however, which I really liked.

The activities range in nature from things to do with your hands to more active possibilities, to things you do on behalf of your care receiver like reading to them, and could be tailored to your own particular situation. What’s more, she has provided space in the book for notes on the success of each activity, how and when it was best to do them, and ways you might have tweaked the activity to work for you, but wouldn’t necessarily remember the next time.

Coming from someone who wanted to interact with her care receiver but didn’t always know how, I recommend this highly! I remember spending time with Dad and not knowing what else to do with him! Exhausted from walking, tired of spending time in museums and malls and parks – there were just times when I didn’t know how to keep him entertained. I would have used many of these suggestions.

Levy has managed to come up with a huge variety of activities to do with your care receiver so you can continue to interact with them, spend valuable time with them, and make them feel engaged and loved. I think this book is just great! ****

Sundown Dementia, Vascular Dementia, and Lewy Body Dementia, Lyndsay Leatherdale: When I first saw this one on Amazon I was excited. Sundowning - a syndrome that happens in the late afternoon, where people with dementia become agitated, confused, angry, or may start to act out, lash out or behave strangely – can be so exhausting for everyone involved that any explanation or help in how to deal with it is welcome. In addition, any new information about Lewy Body dementia is a good thing.

This book was written by 20-year-old Lindsay, using her own experiences with her grandmother, in an effort to help other caregivers. While I applaud Lyndsay’s efforts, the book seemed a little simplistic and didn’t really seem to have much new information. Her advice on ways to deal with sundowning were good, but have also been given in other books and on forums. It was pretty straightforward, however, and a quick read, so might be a good choice for a new caregiver who didn’t have much time. **

Slow Dancing with a Stranger, Meryl Comer: This is really just a memoir – no how-to’s and advice here, really, but it is a good one. It is heart-breaking at times, to read what Comer and her husband went through as he was slowly stricken with Early On-set dementia. What compounded the problem was the fact that this happened twenty years ago, when dementia was still known as senility, and few people knew that it could strike someone younger.

Comer was forced to give up her own work to become her husband’s full time caregiver. He was a doctor of some reknown and no little intelligence and to have to witness his degeneration was terrible for her. However, the sacrifices she made on his behalf were considerable – and heroic. I think this would be a good read for potential caregivers, because she details the mistakes that they made and the things that she would have done differently, i.e, better financial planning, better communication between them about finances, better understanding of medical, care, and end-of-life wishes.

It is a little weird to be grateful for the advances in understanding and awareness of all types of dementia that have occurred just in the last ten years; especially when we acknowledge that many of them came on the backs of caregivers and dementia sufferers. But we really should be thankful for the fact that it’s not nearly as bad as it used to be – and there are measures being taken. It’s also not a very long book, and is entertainingly written. ***

Saturday, November 1, 2014

Isolation = Depression and Dementia.

As a couple, my parents did not have very many friends. My Dad had a few, from work and his church. My mom had a few more, her most special group being several women who went through the Master's of Library Sciences program at the UW with my mom. These women, and my mom, got together on a monthly basis. I remember occasional dinners with my parents' "couple friends" but on the whole, my parents were introverted and preferred it to be just family.

I don't know much more about their relationship than what I observed and can remember now, and what I remember seems fairly dysfunctional, however, they were definitely each other's best friends, and each other's main social outlet; especially as my sister and I grew up and left the house more and more. When my mother died, my father was devastated - his main companion just gone, leaving him alone with his thoughts and grief.

At first, he carried on with his own life. He continued to go to work and go out. He kept skiing - usually a solitary pursuit. He did have a girlfriend for a few years, but they eventually broke up, and then it was just him - alone in his house. Neither my sister nor I had the best relationship with him, and our visits were infrequent, although I did try to see him once a month or so, with my then husband, and then by myself after my divorce.

He spent the bulk of his time alone, talking to nobody, eschewing social opportunities with what few friends he had left. He continued to go to Church - his one social outlet for two hours once a week. Eventually, he became something of a hermit, in his disintegrating house filled with recycling and old memories of his life with my mother. My father also suffered from undiagnosed depression, something we all knew from an early age but never spoke about. He could go into black moods for weeks, and it affected all of us.

I firmly believe that one of the main causes of his dementia was the fact that he totally, eventually shut down. I think he gave up a little bit after my mom died, but we didn't really see the effects until years later. Her death accelerated his already antisocial tendencies since there didn't seem to be a reason anymore to see their friends. And I'm sure his grief and depression weighed on him and crippled any ability to reach out, as did his stoic nature.

By the time we stepped in to take over, horrified by what his life had become, I imagine that he went weeks without interacting with another human being. By that time, the dementia was firmly entrenched, no doubt fostered by his complete detachment from the world.

This is why I argue for the validity of placing our loved ones in a facility if we no longer feel able to provide care. It has been statistically shown that many care receivers are starved for interaction and socialization at home, even if they have a full-time member of the family with them. Usually, that caregiver is busy doing all the things they need to do and don't have a lot of time to spend socializing with their care receiver.

Facilities have been shown to increase and foster interaction and socialization for care receivers; providing them with people to talk to, activities to perform, things to watch, and just straight companionship. Companionship and interaction are so important to keeping the brain going, and keeping one's heart from giving up. I saw what having an in-home care aide did for Dad - someone to talk to who was focused solely on him - I think it really helped, although by that time it was too late.

Don't underestimate the value of other people in your care receiver's life - or in yours! Try to get friends involved in their life, and yours. Arrange visits by whomever will visit. Hire or arrange for an aide a few times a week to spend time with your care receiver, or hire a local teenager to come in and babysit, so to speak. Find an adult daycare - Dad liked his, I think - or a respite program so they can go socialize and you can have a break. We really do need people around us, someone to talk to and maybe care about. Someone to whom we can tell our story and feel that we're not alone.