Book Proceeds to the LBDA.

I forgot to add in today's post about my new book that I will be donating 30% of the proceeds from sale of the book to the LBDA. They are a great organization, doing great work, supporting the people who need it the most!

I hope you will buy a copy, not only for information and support, but also to help support the LBDA. Purchase details coming soon!

New Book - Caregiving: How to Survive and Get Out Alive.

I am so proud and excited to announce that I am getting my new book published! Once again, I am going to self-publish it and I have already submitted it to the on-line publisher to be put together. I also plan to send it out to a few agents since I would love the experience of it being published on a large scale, but I just really, really wanted to get it out in the world.

The book is about my experiences during more than ten years of caregiving! (An astonishing reality I figured out about halfway through writing the book – ten + years! That’s crazy.) It’s really a how-to this time, with some memoir pieces to back up what I’m saying about caregiving. I’m aiming it towards all caregivers, with a special emphasis on new and potential caregivers, and younger caregivers – like me.

What are the subjects, you ask? Well, as all caregivers know, there are certain topics and issues that are universal to caregiving and are talked about and debated and chewed over constantly. Things like: why does family not help out more? Should I lie to my care receiver? What should I do about driving and taking the car keys? How do I break everyone out of denial of the situation? And more.

I’ve taken a lot of those issues, which I’ve learned about through personal experience, my groups, and just reading all the great blogs, forums, and sites out there…. And I talk about them! Honestly, straightforwardly, and humorously, using my own stories to illustrate. I’ve gone chronologically from the denial that my family suffered from in the beginning, to living with my dad as his caregiver, to placing him in a facility, to having problems with family, to what I anticipate on his death.

I’ve also included stories about the unexpected turns my own life has taken, and what I’ve done to create a life for myself alongside of caregiving – something I think all caregivers need to do in some way. I’ve gone through some crazy stuff in the last eleven years, or so, plus, caregiving really brought me to what I consider my vocation – helping other caregivers!

The book will be available on Amazon and at the CreateSpace site, and I will provide those links when I have them. I hope you will read it and enjoy it when it comes out because I have created it for you!

 

Dad's New Digs.

I received a text from Greg, Dad's caregiver last week, asking if we could have a meeting; either at the end of that week, or some time this week. This, of course, struck fear into my heart, since meeting requests can signify bad news, and bad news from the place you hope your parent will spend the rest of their life is really bad. I texted back asking if it was urgent (hoping he would say no!), or could we meet this week on the day I was planning to come over anyway, which turned out to be what we did.

I got to Dad's house, and walked into the living room, saying hello to the Romanian couple that lives there and does most of Dad's care. They're a really nice pair, very quiet, but I know they really care for my father well. I was pulled into the kitchen by the wife, who handed me a paper towel-wrapped, hot, deep-fried stick of dough that when I bit into it revealed some delicious mix of Romanian-spiced sausage and ground hamburger. I happily finished it off while sitting with Dad and waiting for Greg. I knew that if Dad got one of these for dinner, he would be very happy.

As it turned out, Greg wanted to let me know that they would be re-carpeting the house, but he didn't anticipate any problems. He also wanted to ask whether I would agree to move Dad into a different room; a room he took me to view while he explained the choice. Dad has been in the same room since he moved in (five years ago!) but this new room is a little bit bigger and it has a big, tiled bathroom that is half shower, with bars on the wall. They want Dad to have something to hold on to for safety while they shower him, and the fact that it's a nice big wet room will really help them. It'll be a little more money, but I'm all for it.

As Greg and I chatted about Dad and the fact that he had been there so long, Greg went to get a photo of one of their residents, who still lives there, from twenty-years ago! I'm not sure what her illness is but it's degenerative, and at first, her husband lived there with her, until he died. I've had lunch with this lady, who seems happy and healthy. If one ever had a doubt about the care one's parent is getting, or the dedication of the staff, or the question of whether they're providing a comfortable, safe environment - I will tell you that seeing a picture of a resident who has been there twenty years will go a long way towards allaying any doubts or fears!

The fact that Greg and his family have been doing this for twenty years shows real love and dedication for what they do. Their desire to move Dad for his health and well-being only shows that to me again. I will always wonder deep down if I've picked the right place and right people, and I'll worry that he's not getting good care or that something bad will happen - all of those doubts and fears that just happen when you are trusting someone else to care for a loved one. I'm pretty sure this is a good place, however, and the right place - and that they just might love Dad almost as much as I do.

A Place to Go.

Several of my support group members have, in the last six months or so, lost their care receivers. They have stepped out of the role of caregiver for their care receiver. The years of care and worry and dedication, the hours of struggle, and labor, incredibly hard work have ended. They are now finding themselves in the role of widow/widower; tired from the journey and the struggle and wondering – what now?

This can be one of the unspoken truths about caregiving – that it does, ultimately, end – and, that the caregiver will most likely be exhausted and bewildered and just plain worn out. They are the ones who could now use some care and looking after, only where can that be found, outside of family?

A few years ago, I learned about a respite center in Washington called, Harmony Hill.

http://www.harmonyhill.org/about

Here is a description of the organization from their website.

“Harmony Hill began with Gretchen Schodde’s dream to create a retreat center where people could experience renewal and deep well-being. In 1986, Harmony Hill opened its doors as a small nonprofit retreat facility focusing on wellness.

In 1994, Harmony Hill added our Cancer Program, the heart of our mission, to provide support for those affected by a cancer diagnosis including caregivers and health professionals. In 2004, our cancer related programs became free for all participants.  

Today, Harmony Hill serves thousands of visitors each year through our many programs, including those living with cancer, those who seek a retreat away from their daily lives or those who want to make healthy changes in their lifestyle.  We also rent out our buildings/facilities to individuals and groups and offer everything from personal retreats to conferences, and are known for our generous hospitality and nurturing staff, as well as our delicious meals and spectacular site.   Our rental customers have the added benefit of knowing that when they come to the Hill they are helping to support our mission.”

I just thought that was such a great idea, and such a great place to go. I haven’t had a chance to visit it yet but I definitely want to. I urge those caregivers who have recently suffered a loss to find a similar place in their area, or, barring that, take some time off, away whether it’s camping, or traveling, or going to a spa for a massage.

You have just been through an incredible ordeal – caregiving – followed by the stress of whatever funeral or service came after it. You deserve rest, respite, time to think and be alone, time to be cared for, to recover your strength and well-being, to just recover yourself. Don’t jump back into life and whatever needs to be done – at least if you can help it. Now is the time to take care of yourself – or better yet – let someone else take care of you!

 

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.

https://www.yahoo.com/health/many-older-adults-dont-seek-help-for-this-103558365907.html

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.

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.

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. ***

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.

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!

http://thecaregiverspace.org/blog/transition-nursing-home/

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!

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.

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.

 http://www.pbs.org/wnet/need-to-know/health/cottage-industry-neglect-and-abuse-in-adult-family-homes/3681/

 http://well.blogs.nytimes.com/2013/11/18/watchful-eye-in-nursing-homes/?nl=health&emc=edit_hh_20131119&_r=1&

 http://q13fox.com/2013/11/18/widow-warns-about-adult-family-homes-after-husbands-death/#axzz2lCvJ278l

https://fortress.wa.gov/dshs/adsaapps/lookup/AFHPubLookup.aspx

 http://www.csa.us/CSAVerifier.aspx

 

 

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.

Energy Exchange Continued.

Here's a great follow up to my recent blog about getting paid as a family caregiver, posted by the lovely folks at The Caregiver Space blog. It has some really great links and suggestions about how to get paid as a caregiver, as well as resources to possibly achieve this.

It is a dirty little secret that we family caregivers are saving private insurance companies, Medicare and Medicaid, and the Government millions of dollars that they would have to shell out in care of our loved ones if we weren't shouldering the load! There are several European countries, as well as Australia, who have mandated pay for family caregivers, as well as including their medical coverage, in the benefits provided to the care receiver.

It is in these organizations best interest to promote a stigma against asking for fair pay for a job, even if it is taking care of a loved one. The more caregivers feel guilty or as if they need to "do the right thing", the less chance that insurance and Medicare will have to pay out. There are few people in this world who would agree to a job that doesn't pay anything, and no employer would expect them to, yet caregivers fall into a special category. A category that we don't want to be a part of. Caregivers are performing a huge, draining job, and they should receive something for it.

If you are receiving a guilt trip from other individuals or family members who expect you to gladly give up precious time and energy in caring for your loved one - inform them that this is one trip you won't be going on! Nobody should have to go without, drain their savings, and drain themselves to provide care for someone who needs it.


http://thecaregiverspace.org/blog/paid-family-caregiver/

How Inspiring!

I am so honored to have been nominated by a fellow blogger for a 'Very Inspiring Blogger Award"! I had noticed this award going around and was hoping my blog makes enough of an impact to be noticed and I'm grateful to Sandra Ross from, http://goinggentleintothatgoodnight.com/, for her nomination. It just means so much to have people know you've been heard and noticed; it makes what I'm doing even more worthwhile!

The rules of the game are;

1. Thanking and linking to the person who nominated you.
2. Listing the rules and displaying the award.
3. Telling seven facts about yourself.
4. Nominate 15 other bloggers and comment on their posts that they have been nominated (this will be a hard one because a lot of the great blogs I follow have already been nominated!)
5. Display the award proudly and follow the blog that nominated you.

The blogs I nominate are:

http://momsbrain.wordpress.com/   By the lovely writer Emily Caldwell.

www.rheumatoidarthritisguy.com   RA Guy has done a huge amount to spread awareness, understanding, and support about RA.

http://www.thieflewybodydementia.com/   Kathy Lowrey writes an amazing blog, and has now started a second one about life after caregiving.

http://mydementedmom.com/  Kathy Ritchie writes a lovely blog and is doing so much to spread the word about dementia.

http://earlyonset.blogspot.com/  Linda Fisher works tirelessly to advocate for caregivers and dementia sufferers.

http://www.robertssister.com/   Because not all caregiving is about dementia. Trish Hughes Kreis' great blog.

http://incurable-insomniac.blogspot.com/  SK Waller writes beautifully, especially about her health concerns and living with a chronic illness.

http://lewybodydementia.blogspot.com/  The Whitworths' work so hard to advocate for caregivers and those with LBD.

http://emuf.blogspot.com/  I just like Emily's blog!

http://twosocksonefoot.wordpress.com/  I really enjoy Beverly Johnson's blog and her writing.

http://gettingclosertomyself.blogspot.com/  Leslie writes beautifully about living with a chronic illness.

http://confessionsof1caregiver.blogspot.com/  I don't know much about the blog's author but I really like her pithy stories and her spirit.

Some of these blogs may already have been nominated, so they'll really know they are doing something right! I've also included blogs about living with chronic illness, because that's a big part of my life.

Seven facts about me:

1. I love dahlias and I grow them in containers in my garden.
2. I am a mixed media artist, working with fabric, quilting, found objects, paper, and leather. I especially love old keys and feathers!
3. I got married on Kauai where someday, my husband and I hope to have a vacation condo.
4. I became a caregiver at 33 and had no idea what I was doing but I'm really glad I took on the challenge.
5. I read, a lot! Mostly present-day fiction, memoirs, and creative non-fiction.
6. I am currently teaching my step-daughter how to drive, which is quite the adventure.
7. I love doing hospice work, working with families, and facilitating grief groups for those who've lost loved ones. It is the greatest honor to work with those at end-of-life, and those who are bereaved.

Thank you again, and please visit the blogs I've linked to!

Surgery - Yes or No?

There was a post on Alzheimer's Reading Room, the best clearing-house for dementia and caregiver information currently, about anesthesia and it's effects on dementia. Below is a link to their list of articles and other information about this important topic. Too many caregivers and loved ones of dementia sufferers don't yet know the dangers of anesthesia to those with dementia.

It can cause a worsening of cognitive dysfunction; physical paralysis, muscle contracture, and other problems; and increased delirium and confusion. These effects are particularly bad in those with Lewy Body dementia.

Even though I knew Dad had Lewy Body dementia, I wasn't aware of the risks of anesthesia. I authorized a surgery for a double hernia, which I probably didn't have much choice about, but which I would have considered even more carefully had a known about anesthesia and dementia. After the surgery, I noticed a marked drop in his mental presence, facial affect, and cognitive abilities. I only found out a year or so later that the anesthesia had probably worsened his LBD symptoms.

When my caregivers ask whether they should authorize a particular operation or procedure for their loved ones with dementia, I always inform them of the risks, tell them to talk to the physician and research other options, and decide whether the procedure is really necessary.

Check out the link below for more great information.

http://www.google.com/cse?cx=003431791898687910529:WMX1763778196&q=Anesthesia&oq=Anesthesia&gs_l=partner.12..0l2.2740.2740.0.6186.1.1.0.0.0.0.79.79.1.1.0.gsnos%2Cn%3D13...0.80j6400j2..1ac.1.25.partner..0.1.79.t3tl-vP5y7Q#gsc.tab=0&gsc.q=Anesthesia&gsc.page=1

What's Your Orientation?

This is a subject that comes up often in caregiving discussions, thank goodness! The question of whether you should re-orient your loved one if they get confused about where, or when, they are. I saw the essay I've linked to below and it reminded me of what I used to do with Dad and how important it is to keep talking about this, even though practices have changed a lot in the last ten years.

When I started caring for Dad, the prevailing wisdom was to continually remind your loved one with dementia about who they were, where they were, what year it was, and that the people they might be talking about having just seen had, in fact, been dead for forty years. It was called 'reality orientation' and it meant that family members and facility staff corrected people with dementia all the time. Even before I knew anything about dementia, and how you should treat people with it, it seemed like the cruelest thing in the world to keep making them even more confused and anxious by forcing to think or remember a certain way.

Years ago, I watched my aunt and my father deal with my grandmother, who had vascular dementia. My aunt insisted that what my grandmother said was wrong, that the people she was talking about were dead, that is was a different year from the one my grandmother thought it was, etc. I knew nothing about dementia, but this seemed so pointless and mean to me. Who cared where she thought she was, or who she thought she was talking to? When I took over for Dad, I decided early on that I was going to go along with whatever he said or did.

And I did, and it was fine. He would tell me wild stories about having been on his sailboat on Lake Washington during a huge storm that trashed the boat, and how lucky he'd been to stay alive. I knew the boat had gotten loose in the wind five years before and crashed into a dock, but I didn't remind him of that. He told me that my mother had died while giving birth to my sister, who was too big (I think he was thinking of her as a full-grown adult), and I just listened. I don't think he ever mistook me for someone else, but then he kept a lot of what he was experiencing to himself, so I don't know how he saw me. I do know that it kept him relaxed and unstressed that I didn't try to make him think something he couldn't, and I got to hear some interesting stories!

Now we know that people with dementia are unable to make current memories - snapshots, if you will, of what is happening in the present. All they have are snapshots from the past, and a lot of empty pages in the present. Lacking these recent snapshots, they try to make sense of current events and people using old memories. So a waiting room might look like the airport they used to fly into as a pilot. Or they think a caregiver who they see all the time and who cares for them intimately is their mother. Seems logical to me.

Dad and I are past the point where he's even talking, let alone mistaking me for his mother or thinking that he's somewhere, or somewhen, else. I no longer know what is going on in his mind or what he is thinking or feeling. I'm proud of how I dealt with his dementia, though, and that I made his life as comfortable and enjoyable as possible - largely by trying not to remind him he had dementia!

I'm so glad that practices have changed in the last few years and that good people have studied dementia and what it is doing to the brain and behaviors. Wonderful people are developing new techniques to deal with those with dementia in a compassionate and low-stress way. I tell all my caregivers not to try to keep their loved ones in "reality" because what is reality after all? Reality should be a relaxed, non-stressed care receiver!

http://www.alzheimersreadingroom.com/2014/09/how-reorienting-dementia-patient-can-be.html

Learning to Speak Alzheimer's. Joanne Koenig Coste
Contented Dementia. Oliver James

Endurance.

I went to see Dad yesterday for the first time since getting back from Boulder, CO (site of lots and lots of Shakespeare!) It was good to see him, and I was early enough to catch him at lunch, which I usually try to avoid since I don't like getting in the caregivers' way. He was pretty alert, and he half-smiled at me when I smiled at him, and widened his eyes at me in the teasing way he sometimes does. His favorite caregiver told me that Dad had said "Hi!" to him that morning, which apparently is a rare occurrence. It was good to hear that Dad still reached out sometimes into the world.

The last few times I've visited; in fact, most of the time when I visit, Dad has been sleeping. I don't know if it's just the disease making him sleepy, or perhaps he just prefers to descend into sleep as much as possible. However, on my last visit, I realized that he might not really be sleeping. In fact, as I watched him raise his arm to scratch his face, while keeping his eyes resolutely closed, I realized that he might just be retreating from a world that is no longer comfortable or comforting.

It made me think, as I drove away, about him squinching his eyes closed, even though he may have known I was in the room. I thought about how rarely I see him awake and alert, and about the fact that he may not be unconscious all the time - he might just be enduring. And if there's one person who can endure - it's my father. He was the most stoic, quiet, uncommunicative man and he bore the dramas, injuries, and traumas in his life without complaint or discussion. He just tightened his jaw a little further, and kept on. The only time I really saw him unhinged was when my mother died.

It makes me sad, the fact that he's just enduring what has become an untenable and unbearable life. I try to enjoy every little, tiny thing about my life because I don't know how long I'll have it, or what will happen, so I try to be grateful for what I have. There have been times, mercifully short, when I have had to just endure life - once when I got Rheumatoid Arthritis and once when I relapsed - and I remember how horrible it was and how glad I was when it was over. I would hate to have to endure the life that was happening to me...for years.

And that's what is happening, with dementia sufferers and their caregivers. Endurance, sometimes for years, of difficulties, dramas, and unbearable indignities. There is really nothing to do but endure and hope for something better for our loved ones after their death. Most of the time, I hope Dad doesn't have to endure much longer. Today, though, it's nice to see him up and about, enjoying his lunch as much as he ever did, surrounded by people who love him.

Energy Exchange.

I was talking to a caregiver a few weeks ago, who has been sharing her caregiving journey with me over the last year. A year ago, she came out of the denial phase that we all go through when we first see dementia in a loved one, and realized that there were some serious issues with her mother that needed to be addressed. She approached me for some advice about what to do and where to start and I was happy to help.

Unfortunately, her mother lives across the country, which made it more difficult to start the process of taking over financial affairs and overseeing her mother’s health. There is an older sister who lives relatively close by but as is often the case, the sister is reluctant to commit to doing much for their mother and not as responsible as my acquaintance, who has had to take on almost everything.

I few months ago, I learned that the caregiver had gone through the difficult process of convincing her mother that it was time to move to a facility, which had gone smoothly, and everything seemed to be progressing. My friend had also gone out to clean out and close up her mother’s home, again with limited help from the sister. My friend mentioned in passing that she was really struggling to find the time at home to take care of all her mother’s bills and clerical tasks: she felt her own job, and her time with her family was suffering. She also felt she was resenting her mother's tasks, and therefore not doing them well, and there had been problems with late payments.

I suggested several tricks to make her tasks a little easier: putting all her mother’s mail in one spot as it came in and designating one particular day a week to deal with it (Dad gets more mail than I do, and it piles up); spending a designated length of time, doing only her mother’s tasks; paying as many bills as possible on-line and automatically, something I have found to a be a lifesaver with Dad’s various bills and payments; and marking in her calendar when various things would be due. I also suggested that, if her mother’s estate could afford it, that she should really get paid for what she was doing, something that she seemed surprised to hear.

I told her that her time and energy were worth being paid for; I reminded her that she wouldn’t do work for a client without presenting them with an invoice. She was devoting valuable time to her mother’s business, and she deserved some sort of exchange for that. So often, caregivers don’t look at their situations this way – they don’t believe they are worth getting care back. Often, resentment and bitterness can grow, which harms us emotionally and can affect the job we are doing with and for our loved ones.

Most people have the, somewhat idyllic, idea that caregiving is done only out of the goodness of our hearts, because we feel the call, and because we are happy to care for our loved ones. This may be true, but what is also true is that caregiving is a job – and a tough one. I wanted to care for my Dad for personal reasons, but I also knew that I could only do it if there was some sort of energy exchange – in this case money. I would be sacrificing a lot, and I needed to have compensation for it, financially and psychologically. Luckily, my father had enough money to make this possible.

I urge caregivers to ask for some sort of energy exchange for the phenomenal jobs they do. We all deserve an exchange when we use precious energy and time for another’s care or benefit. There isn’t always money available for a paycheck, as in my case (and believe me, I wish there were, especially money from the government), but there are other types of compensation. The use of a care receiver’s car for tasks and errands; a little extra money for a caregiver’s groceries; or living rent-free with the care receiver. Be creative in finding ways to receive – because you ARE worth it!

 

Did Malnutrition Make Dad's Dementia Worse?

It has been shown that malnutrition in the elderly can lead to fatigue, depression, muscle weakness, weakened bone health and immune system, anemia, weight loss, and heart problems. Poor nutrition also obviously leads to a decrease in much-needed vitamins and minerals. Malnutrition in the elderly often happens when they are living alone and are either too weak or uninterested in feeding themselves properly, or have medical issues that keep them from eating. Although it is starting to get more attention, and more articles are being written, many people still don’t know about the connection between poor nutrition and dementia.

Poor nutrition not only worsens the symptoms of dementia, but increases the chance of an Alzheimer's sufferer needing hospitalization or institutionalization. One study that looked at institutionalized patients with dementia found that fifty percent of them had calorie or protein malnutrition. Malnutrition can make the symptoms of dementia worse for people unfortunate enough to have this condition; people with dementia who are undernourished may experience a rapid worsening of their dementia and their health.

 

When I realized that there was something seriously wrong with Dad, and that I couldn’t be in denial anymore, it was partly because I became aware of how he was living and what he was eating. His house was dark, cold, and messy, and he had evidently largely been eating carbohydrates. Dad has always suffered from depression and I can only guess that eating bread sandwiches (bread with a bread filling), chips, potato salad, cookies, crackers, and pop was his body’s way of helping that, since carbs can temporarily improve depression.

I felt so bad when I saw what he was doing, and even worse when I realized the many layers of clothing he was wearing masked a very thin frame. Dad has always been naturally skinny, but he had lost a lot more weight. I don’t know whether the poor eating had helped cause the cognitive issues I was seeing or whether the cognitive issues lead to malnutrition, but either way, he was in danger. When I took him to the doctor, she diagnosed him with a serious B12 deficiency, which was the first time I heard about that vitamins connection to dementia.

Researchers have discovered that deficient vitamin B12 levels correspond to both a decline in cognitive ability and a decrease in brain volume. Brain atrophy (a loss of cells that causes areas of the brain to actually become smaller) has been clearly identified as one of the physical effects of Alzheimer's disease. A deficiency in this essential vitamin can cause dementia, as well as depression, bipolar disorder, nerve damage and anemia. For dementia patients, if a Vitamin B12 deficiency is prolonged, reversal may be impossible. If the deficiency is caught in time, it may be reversed, and cognitive abilities approved markedly.

Now I urge the people I meet who are just starting to notice cognitive problems in their loved ones to assess their nutrition and have a doctor check their levels of B12 and other essential vitamins and minerals. Some of the cognitive issues they are seeing could be completely reversed, at least temporarily. Dementia symptoms don’t automatically mean Alzheimer’s; there are many other factors that can be ruled out first. I still wish that I had been braver about dealing with what was going on with Dad. Perhaps the cognitive decline could have been reversed somewhat, or slowed down – I’ll never really know.

Read more : http://www.ehow.com/about_5122164_early-onset-dementia-vitamin-b.html http://alzheimers.about.com/b/2011/12/02/low-vitamin-b12-levels-linked-with-symptoms-of-alzheimers.htm

Up In The Air.

Summer is always an evocative time for me. The first weekend of August always makes me think of my parents. In Seattle, the first weekend in August is Seafair weekend, when many people get together on Lake Washington on their fancy boats, and various other “floating” objects to drink, enjoy the sun, and watch the antiquated and almost non-existent sport of hydroplane racing.

I think about my mother because she died on this weekend, twenty-four years ago this year. I still miss her. I think about my father because almost every Seafair weekend for the past thirty years or so, the Blue Angels synchronized flight team have come to perform. For most of the week leading up to the weekend, twice a day you can hear the shriek of jets as they streak low over the city, practicing their fancy stunts and familiarizing themselves with our air space.

Dad loved the sound of the jets. Until a few years ago, his aide, Del, would take him out on Seafair weekend to some hill overlooking Seattle so he could see the Angels flash over him - feeling in his body the thrum of the engine and the plane cutting through the air. Dad loved pretty much all planes, actually. For a few years in my early childhood, he had his pilot’s license and would take us flying, and for as long as I could remember, he was building planes in our garage.

The problem was that Dad was a workaholic – feeling so responsible to his family, his job, and his other duties, that he rarely gave himself the time to work on them. There was always Boeing to go to, or a car engine to repair, or a toilet to fix, or yard work to do. Every year, he got a week off at Christmas, and he would spend the whole week downstairs, filling the house with the smell of epoxy. But he never finished.

When the time came to clean out the garage – a mammoth task – we found no fewer than three different planes, in various stages of construction, and piles and boxes and stacks of plane parts, engines, gears, wings, propellers, and more. We arranged an estate sale for people to come and pick over his many tools, but I despaired of finding something to do with his planes. I didn’t want them to just go to the dump – all that work and dedication, wasted.

At the last minute, on the day of the sale, a small ad we had put on Craig’s List paid off. A local man called asking about the plane parts. His voice over the phone became almost tremulous with excitement as I listed what we had. He told me not to get rid of it – that he would be there as soon as possible - and he was, trailer and friends in tow.

In the end, they took everything, even small parts and instruments we’d already thrown out. They combed through the dumpsters, finding everything they could. As the man wrote me out a check, I almost couldn’t contain my happiness. Dad’s work – his passion – wouldn’t be wasted. He had never finished a plane, but now his various parts and pieces would be resurrected – used in the way they were supposed to be.

So today I hear the scream of the Angels, and watch as they race across the clear sky, and I remember my parents – for different reasons. I remember my mom for her laugh, and her love of me. And I remember Dad’s planes and how they were an expression of his inner self – a dream of flying, of slipping the surly bonds of earth. He loved to fly, and I hope that somewhere, somehow, his planes are flying too.

Caregiver Space.

http://thecaregiverspace.org/blog/caregiver-support-groups/

 

 

This is a link to an essay I wrote for The Caregiver Space, an amazing blog/Facebook page that is all about supporting and informing caregivers, with lots of great posts, opinions, articles, etc.

 

In my essay, I talk about the benefit of support groups for those of us walking the caregiving road. I focus on my Lewy Body groups and how beneficial it has been for my members to be in a group of people that understand their particular struggle. However, I wanted to add that whatever dementia or illness your loved one, or maybe you, suffers from, a support group is a must-do. The balm, fellowship, and great info that you'll find there will be life-changing.

 

I urge all caregivers to find a group near you, and if there isn't one, and, tragically, there still aren't enough, check out the many on-line forums, chat rooms, blogs, and Facebook pages around. Memory People on Facebook is one such amazing group - it is a closed group but you just have to ask to join and someone will contact you.

 

I hope you go to check out my essay, but stay for the content and the comfort that The Caregiver Space provides. 

Sharing Shakespeare.

My husband is performing in Henry IV, part 1 at the Colorado Shakespeare Festival this month, and it has been all Shakespeare all the time for a few weeks now. So it wasn’t surprising that when I went to the bookstore the other day to find something new to read to Dad, I thought of picking up a collection of the Bard’s plays, a greatest hits, if I could find it, or his Sonnets. Reading to Dad has been so rewarding, lately, but I’m getting tired of the Bible, although the Psalms are always a good standby.

In the end, the bookstore didn’t have a good complete collection, only the plays individually, but I ended up getting a book of poetry instead. Poetry for Hard Times, a collection edited by Garrison Keillor, one I’ve looked at before briefly and thought might be good for Dad. I also bought a copy of Thoreau’s Walden, which I have read before and thought Dad might enjoy hearing since he was something of a nature lover (and was big on simple living.)

The poetry collection turned out to be a winner; I knelt by Dad’s chair and leafed through it, picking out poems I liked or had seen before and reading them out. Surprisingly, Dad was very alert and seemed interested. He kept his eyes focused on my face, and I looked up often to smile at him. At times, I caught a faint smile on his face as he looked at me. I’m not sure if he was trying to figure out what I was doing or saying, or just happy to have company, but it was just so nice for me to have him so engaged. As I’ve said before, I doubt he knows who I am – if he does, he’s not saying – and while I came to terms with that a long time ago, it’s still nice to imagine he enjoys my presence.

It reminded me of a conversation I had with a caregiver a few days before. This person was describing how their sibling wouldn’t go see their parent with dementia because she “didn’t like seeing him like this – it’s too hard.” I know that people deal with the difficulty of having a loved one with dementia in their own way, so I won’t criticize, but being there with my Dad just made me realize once again; we don’t visit for us, we visit for them. In the end, it’s not about us, it’s about making our loved one feel connected to the world; giving them companionship and love; and affirming the invisible connection between us.

I had my issues with Dad in the past, and I would never judge other’s decisions to be part of a loved one’s life or not. I can only say it made me happy to read to my Dad and have him look me in the eyes and be present, if only briefly. I didn’t get to the Shakespeare, but I’m sure my husband will have a collection I can bring from home next time. But we did pretty well with a collection of poems – ultimately, it’s not the words that matter – it’s the reader saying them, and the listener receiving them.

Sexetiquette.

In the last few months, the subject of sex has come up a lot in my discussions with caregivers, so when I saw a book about sexuality and dementia pop up on my Amazon list I was happy, hoping it would help me answer some of the concerns and questions I’d been presented with. It is an interesting topic because sex in normal life is a private, somewhat taboo topic; sex in dementia life can be even more difficult to talk about! But I’ve had several caregivers present different sexual situations involving their loved ones, and it seemed like a good thing to explore.

The desire for sexual intimacy doesn’t just stop when someone is diagnosed with dementia. Sometimes, sexual contact continues between caregiver and loved one late into the disease and that’s great, as long as everyone is fine with it. I’ve also talked to caregivers who wanted suggestions for how to avoid the sexual inclinations exhibited by their loved one; either toward themselves or towards the other parent, if the caregiver is an adult child of someone with dementia.

I gave the best answers I could to these requests for solutions to a delicate problem, but it made me realize that in all the books I’ve read on dementia, there hasn’t really been much discussion about how to deflect sexual advances carefully and tactfully. Some of the books cover sexual behaviors in facilities and how professional caregivers should handle it, but there wasn’t much for the family caregiver.

I had no problem with Dad having sex, as long as it was consensual (and I didn’t know about it!); in fact, when I toured facilities the first time, I asked all of them what their policy was on sexual relations between residents, whether they allowed them, and how they handled it. Since I knew that relationships in facilities between residents were possible, I wanted Dad to be in a place where it was okay to experience as much of the relationship as possible, should it happen. The subject of a relationship between Dad and a resident never came up - however, he did have a relationship with someone else.

A few years after my mom died, my father started dating a woman named Janet, who was a lovely individual, although she had some personal issues. I imagine they had an intimate relationship, not that I wanted to know about it, but they eventually broke up. After I moved in with Dad, unaware of his physical situation, she began sending him letters suggesting a renewal of their relationship. I met with her and told her about Dad’s illness, then we all had lunch together, which everyone enjoyed. Eventually, I hired her to be one of Dad’s informal caregivers; a few days a week she would take him out to lunch, or to her house, or on a walk with her dogs, etc.

The situation worked for a few years, until her mental issues began to intrude, making me concerned for Dad’s safety and my own sanity, and I fired her. (This story is detailed in my new book!) Until that time, I know that they enjoyed spending time together, and I suspect they resumed their intimate relationship, which I was fine with. Eventually, I suspect he lost that drive since he never really exhibited any sexual behavior to his caregivers or to me.

As a family caregiver, it is important not to ignore the question of your loved one and sexuality. Think about various scenarios and decide how you feel about them and what you think is best for you and your loved one. If they are your spouse, it is up to you whether you want to continue to have a sexual relationship; if not, there are ways to deflect and redirect that energy. Sometimes, what comes out as a desire for sex is actually a desire for touching or affection or connection.

Sometimes, dementia sufferers who are living close to each other in facilities make the reasonable assumption that the man they sit with at dinner every night, or the woman they take walks with is actually their spouse, or that they are in a relationship, even though their spouse may still be alive! Some families have a problem with this, some don't. Personally, I think as long as everyone is safe and happy, who cares if they find comfort with someone else? In any case, it is up to the family to make the decisions, but try to open your mind to the possibilities somewhat since your care receiver's well-being is what really matters, not your own feelings.

Make sure everyone is safe and comfortable and not doing something they don’t want to do. If you are placing them, find out the facility’s policies on sex between residents, what they do with inappropriate sexual behaviors, etc. Sexuality is a natural part of being an adult, and it doesn’t just go away with the onset of dementia. Don’t be embarrassed or uncomfortable, and find a good support group or peer who can discuss options and normalize it for you.

Sexuality and Dementia, by Douglas Wornell: I recommend this as the first book I’ve read directly addressing dementia and sexual behaviors. He covers reasons for sexual impulses in those with dementia, as well as medication issues, and the possible issues with sexuality in facilities. I wish he gave a few more strategies for how to disarm a situation between a family caregiver and loved one, for example, but he does suggest some, such as redirection. A quick, informative read!

I've never heard of this site but this is a very interesting article on a new test for Alzheimer's. For so long the only way to decide whether someone had Alzheimer's, or other types of dementia, was more guesswork than anything else.

People ask me whether it's really worth it to get an accurate diagnosis, arguing that, in the end, dementia is dementia. In some cases, I agree with them, however, getting a correct diagnosis (or as correct as possible) can help avoid medication problems, since some meds are harmful for certain types of dementia; can help people get services and support aimed at that specific disease; and can help families plan ahead for housing and care.

I know that there are other tests like CatScans and MRI's that help determine a diagnosis, but the only way to know for sure is through an autopsy. It is heartening any time we see some sort of advance in medical science related to dementia - usually Alzheimer's. I know I usually focus on LBD and not Alzheimer's, so I'm hoping that they might tweak this test to help diagnose that, but any win against dementia is a win for all of us.


http://www.iflscience.com/health-and-medicine/researchers-make-significant-progress-development-alzheimers-blood-test

The More Support the Better!

When I became Dad’s caregiver, lo these many years ago, I was the first person in my peer group to be a caregiver. I had no friends or acquaintances who were going through something similar, and my family is fairly small so there wasn’t much help there, either. It was just out of the ordinary to have to learn how to be a caregiver at 33 so I didn’t have any community to help me out that were going through the same thing. I found some support in books, although, again, it was hard to find ones written for people my age.

So I muddled along as best I could. I remember at one point investigating the Alzheimer’s Association Washington chapter and going to their support group, but I don’t remember finding it very helpful. I hadn’t even heard of Lewy Body dementia at the time, so wouldn’t have thought to look for that group, although there probably wasn’t one ten years ago.

Now, of course, there are many more support groups for caregivers and people suffering from illness and dementia than there used to be. I am really happy to see this because I think support groups are so important. I’m not even sure how often I would have gone to a support group, had I been able to find an appropriate one, but I think it would have helped somewhat to meet others like me and hear how they were dealing with the problems I was dealing with.

When people ask me now whether a support group really helps, I tell them absolutely! It can help so much just knowing that there are other people out there who have wrestled with the same dilemmas; felt the same crazy emotions where you both hate and love your care receiver at the same time; and struggled with the million and one practical details and problems that come with the job.

Over and over, I have watched new attendants of my groups sag with relief and happiness as they listen to someone else detail an issue or tell a story that they can identify with. Knowing we are not alone and that others understand is such an important element of mental health. I truly believe that getting support from others can lessen depression and isolation in caregivers, while at the same time giving them tools and resources they might not have found anywhere else.

If you don’t attend a support group, I urge you to look for one in your area. If there isn’t one, consider starting your own. You may be surprised how many caregivers show up. Check the websites of the major foundations and caregiver support organizations for help in your area.

Communication.

I thought this was a great post on Caregiver Resources Vermont about communicating with people with dementia. We all know how difficult it can be, not only to understand what our loved ones are trying to communicate to us, but to convey to them what we need or want them to know.


http://www.eldercareresourcesvermont.com/2014/06/ten-tips-for-communicating-with-a-person-with-dementia-2/




Dad is past being able to communicate verbally at all, unfortunately. The Lewy Body has stolen his words, but it has also stolen the physical capacity of his throat and jaw muscles to produce sounds. His caregivers and I have to rely on his physical and non-verbal cues to know when he is happy, mad, hungry, irritated at being managed, etc. Believe me, he is very good at communicating irritation; he stiffens up and refuses to move, and his jaw locks. (I recognize that jaw-locking from when I was a little girl and he was unhappy about something.)


Dad was never much of a talker, we used to spend a great deal of our time together quietly, out walking, or looking through museums. When he first moved into the Adult Family Home where he lives now, they kept trying to make him talk and interact, which, of course, is a good thing as it keeps our loved ones functioning and involved. I had to tell them, though, that he was always the quiet type and not to worry if he didn't say much.


We still spend our time together quietly, and I try to communicate my presence and my care non-verbally, with touches, and hand massages, and smiles. Regardless of whether your loved one can communicate and comprehend verbally or not, the unspoken will always work - touch and body language are your best tools, and they can convey the best to your loved one that you care.






Caregiver Resources has a specific page per state with resources (obviously!), information, and interesting posts. I urge you to check them out.

Things to Do, People to See.

Well, it's Summer in Seattle again (no, really, check the calendar) and as I was driving over to see Dad, I started thinking about all the fun things I love to do in the Summer; like walking at the lake, being in my garden, taking picnics to the park, watching outdoor movies, taking road trips, and going to car shows and craft shows. Dad used to love summer, primarily because he loved to swim in Lake Washington, but also because we took our annual family trip, and occasionally did other fun stuff outside.

Dad doesn't go out now, but I was remembering back to when I lived with him and we would go out and about on a sunny, summer's day. We spent time walking around the lake, of course, especially Green Lake in Seattle and Gene Coulon park in Renton. We also went roller-blading a couple of times and I rented bikes for us. We would find restaurants with patios and eat our lunch outside in the fresh air, and walk around some of the nicer, open-air shopping centers in our area. We went to State parks that weren't too far away, like Mount Rainier. We also did our usual year-round activities like the Museum of Flight, one or two of the other museums in the city, and the mall.

I look back on these good memories and it makes me happy. One of the things we both liked the best was the people watching - since we were both inveterate people watchers. Summer in Seattle is great for that because everyone comes out, after a Winter of drizzle and gray. We would park ourselves at Starbuck's at the park, he with his favorite root beer, me with a lemonade, and enjoy the show. I'm sorry that he can no longer go out with me, especially since my husband and I like going to classic car shows, which he loved!

But it made me think about caregivers, of course, and what they could do with their care receivers, since both people are probably tired of being cooped up inside. So here are a few suggestions, some for the Seattle area, and some just in general. Depending on where your care receiver is in their disease process, some of these may not work.Whatever you do, I hope you all have a lovely Summer!

Seattle

• Museum of Flight
• Seattle Art Museum
• The Frye Art Museum and their programs for Alzheimer's patients and caregivers
• Pike Place Market (another favorite for Dad)
• Green Lake park, Gene Coulon park, Gasworks park
• Electric boat rentals on Lake Union
• Many car shows, craft and art shows, and neighborhood festivals
• Alzheimer's cafe's in the area - please check the blog, there are more and more around.
• Ivar's on the waterfront
• University Village

In General

• Museums in your area
• Local festivals, shows, and fairs
• Senior center activities
• Alzheimer's cafe's
• Local and State parks
• Mini golf or other small course
• shopping malls and outdoor shopping centers
• any local tourist attraction can be fun - rediscover your city!
• lunch on a restaurant patio
• local off-leash dog parks (Dad loved this!)
• swimming at the local pool
• sitting outside, enjoying the sun and fresh air