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.

Friday, October 24, 2014

When It Is Time to Move.

Here is another great post from The Caregiver Space about transitioning to facility care! They have asked caregivers for tips and suggestions on how to move their loved ones and make them comfortable in their new homes, and they are all great!

I've written about this before but here are a few things I did when it came time for a facility.

When I decided to move Dad, I made sure I did it while he was still somewhat lucid and able to recognize, and become familiar, with his new home. Before he even moved, the facility had me fill out a document answering many, many questions about Dad. Where he had worked, who he had been married to, where he had lived, what he liked to eat, and what he loved to do. This was intended to help his caregivers learn about him and give them information about him so they could help him be comfortable and understood. I think its a great idea and would wonder why any facility wouldn't suggest it.

I was actually able to find an apartment that was similar to the layout of his bedroom, which I think helped him become accustomed to it. I stocked the apartment with food that he liked and some comfortable furniture, and I planned to bring his favorite and most familiar furniture, books, pictures, and objects on moving day so he could feel at home. His headboard and chest of drawers, a print that had been in my parent's living room forever, a wall clock that had been in the kitchen as long as I could remember. Little touches that a lot of the time you don't even notice anymore but that soothe the eye and the brain.

We were also able to bring his beloved cat to the facility, which I knew would help Dad immensely. Finding a facility that allows pets is a great idea. Even if your loved one doesn't have one, the facility probably will, and animals have been shown to have a physically calming effect.

I did tell Dad he'd be moving, but it generated anxiety and anger in him, so I ended up moving him secretly. I packed up his room over two days, while keeping him out of the house, but made sure that he couldn't tell his room had changed. The second day, we moved everything over to his new apartment and made sure it was unpacked and comfortable before having his aide bring him there for dinner. We all had dinner together in the facility dining room and then took Dad up to introduce him to his new place. Sneaky, yes. Absolutely essential? Again, yes. It really depends on your loved one, how much they can be involved in the potential move. If they are okay with it, try to include them in a few of the decisions.

At the beginning, Del, his good friend and aide, stayed with him for a few days, in the apartment so he would have a familiar face around. I made sure to visit him a day or so after the move so he would also know he hadn't been abandoned in this new place. After the initial move in, I arranged for private aides, including myself, to be with Dad almost every day; going out for walks or lunch or to church on Sundays. If you can, and as your loved one's disease allows, arrange for visits from family and friends as often as possible so that your loved one still feels loved and part of a community. It will also show the staff that this is someone who has people watching out for them - concerned for their well-being.

A move away from familiar and loved surroundings is never an easy thing, but it is often necessary and the best choice for everyone. It can be done in a loving and mindful manner. Read the above post for tips on how to do it in a way that works for everyone - care receiver AND caregiver!

Friday, October 17, 2014

Facility Fears Part 2: Being Prepared.

This is part 2 of my previous blog. At some point this summer, a news story circulated on Facebook and also Yahoo, and probably other sites, about a family whose elderly mother had died because of suspected nursing home neglect.

Her son was the predominant speaker, and he described his mother in glowing terms. She had lived with them for years, apparently, and they had been proud to care for her. It didn’t sound like she had dementia, just the expected health problems for someone her age. As often happens, there was an accident, she was taken to the hospital, and the family had to quickly find a nursing home/rehab facility for her. Within a few weeks, as I recall, this otherwise healthy elderly woman was dead – from suspected neglect.

Of course, this caught my attention, and I felt terrible for the family. This is something all of us who have loved ones in facilities hate to hear, and fear will happen to our care receivers. What could possibly be worse? But something the gentleman said caught my attention in particular, and reminded me about an issue I talk about often – something I tell every single caregiver, and potential caregiver, I talk to. It’s about preparation.

The gentleman said that his mother’s accident happened suddenly, and that they only had 24 hours to find a nursing home for her. While I sympathize with their plight, I also think they could have planned ahead. Apparently, their mother lived with them for several years, as she aged and her health declined. Knowing that she was aging, couldn’t they have started investigating facilities and resources in their area as a proactive response to a definite possibility of accident of injury?

When I started caring for Dad, I knew absolutely nothing. Suddenly, we were faced with the need to find either in-home care for Dad or a facility – immediately! Where to begin? Fortunately, we had a care manager helping us and she found an in-home care agency, but again, we were very fortunate in that choice. If we’d found them on our own, they could have turned out to be not such a good agency, and we wouldn’t have known that until it was too late.

I definitely didn’t want to go through that again. Wanting to be proactive as Dad’s health declined, I started looking for a facility well before he had to go into one. That way I was able to really do my research and find the right place, without feeling rushed.

When I speak to people now who talk about their loved one still being in denial, I tell them to just start doing research on their own! Find a lawyer now, find a facility, locate resources – that way you’ll have them when the worst happens, as it did for me, and for this family. I am so sorry it happened to them, but perhaps some good can come out of it, if it helps convince a family that they need to start planning ahead for their loved one, before the worst happens.

Tuesday, October 7, 2014

Facility Fears.

We were sitting on the couch a few weeks ago watching TV and an ad came on for the eleven o’clock news. They were promo-ing a story about abuse in an adult family home (film at eleven!) complete with deep-voiced announcer warnings, quickly cut editing, and a short cut of a grieving widow.  It is only the latest of the media stories I’ve seen about dangerous facilities and abuse of our elderly and I find it so frustrating.  Not because I don’t think these problems, and many more, don’t need to be out there, in the public eye, growing awareness – because I do. 

I find it frustrating for two reasons: because we just see the problems, and nobody proposes any kind of fix or solution; it seems to be fear-mongering of the worst sort since we rarely hear about good facilities, and it can make a difficult choice even more wrenching.  It can be so difficult to make the decision to place your loved one in a facility; weathering your own guilt, the opinions and judgments of others, and the feelings of your loved one.  People tend to want us to believe that home care is the best and only option, which just isn’t true for many people.  I physically could not care for my father, and so placing him in a home with good care was my only option.  Even if I could have cared for him, I probably would have placed him anyway because there were things I didn’t want to do or see happen to him.

The next difficult part is finding a good place, out of the thousands that are out there.  I wonder every day of my life whether Dad is okay, or being treated right, or that small cut on his hand is from his fingernails or because of a caregiver.  In the end, I have to trust that I picked the right place, even while keeping an eye out and making sure their government rating is still good.  We must trust our instincts, our senses, other people, and our government in order to pick the right home for our loved ones.  Unfortunately, any or all of those things can be wrong or fooled, and sometimes the wrong place gets picked, and people get hurt.  Of course, this is sad.  But we are not psychic, we don’t know everything, and sometimes you just have to hope for the best and prepare for the worst.

While these stories tell us what to look out for, which is good, they may also paralyze people and make it difficult to choose a facility.  A few months ago, there was a Frontline story about a Seattle-based company that ran Assisted Living Facilities.  It exposed the numerous counts of abuse, wandering, resident death, and employee abuse that this company was responsible for.  It also included an interview of the CEO who strove mightily to absolve his company and managers from fault, although you could see his panic.  Families told stories of loved ones that disappeared, were hurt, or died and said if they’d only known the company’s history, they wouldn’t have chosen it.  Once again, good to have the warning out there about this particular company, but no balancing representation of the good companies. 

(Ironically, after I watched this story, I drove past the Assisted Living facility where Dad used to live; a bright, lovely facility where he got good care.  I saw on the sign that they had been bought out by the very company featured on Frontline and I had to laugh.  If I had left Dad there, would he have been subject to the same dangers as on the program?)

I think what I’m actually trying to say is that these stories are important and they need to be told.  These terrible caregivers and facilities need to be outed so that we can get better accountability and government oversight.  But I would also love to see some stories about good facilities and caregivers so families don’t feel there are no good choices or that they will be abandoning their loved one to the worst kind of hell, when in fact, there are great facilities out there.  Show us what to look for and how to look – show us what a good place looks like.  And finally, give us a fix, give us some options.  If facilities are bad and we can’t care for our loved ones at home, what should we do?  Don’t just show us the problems – show us some solutions.



Monday, September 29, 2014

Positive Grief Experience.

It's been pointed out to me that I have my dates wrong.  The group starts tomorrow the 7th.  I apologize for the error.

To all my local readers, I'll be co-facilitating a six-week, Growing through Grief Group with a good friend at Providence Hospice's Grief Support program. Ross, who is facilitating, is the most down-to-earth, compassionate, funny individual, and he runs a great group. I've facilitated these groups before and they can be so positive for people who are dealing, or trying to deal, with a loss in the last year - or even last few years.

As we all know, grief can be handily pushed down, ignored, and subsumed "until I have more time to deal with it," leaving a lot of grief un-grieved. When there is a new loss, of any kind, big or small, the unexamined grief from the past can resurface, sometimes violently, leaving people exhausted, strung-out, bereaved, and wondering what the hell is happening.That is why a group like this can be so good because it helps support us through this difficult process.

During the group, we will tell our stories, learn techniques for grieving, and experience new possibilities for what life - post loved-one - can look like. If you feel like this might be for you, I urge you to call 206.749.6602 and speak to someone there who can get you signed up. The group is starting next Tuesday, the 10th, at 1:00, and will continue for six weeks until November 18th, skipping the 28th.