Monday, August 26, 2013

75 - and Counting.

As I sat with Dad the other day, enjoying the cool breeze coming in his open window, cancelling out the heat of the day outside, I found myself studying some of the greeting cards sitting on his side table.  There was one left over from Christmas, and the card I had sent for Father’s Day, and two that said, Happy Birthday!  They were from my two aunts, Dad’s sisters, and were inscribed simply, wishing him a good day.  Sometimes the summer just goes by so fast, and I realized that it was, in fact, July, which meant that Dad had just had a birthday.

It took me a minute (and some counting on my fingers) to figure out which birthday Dad had just celebrated, and I concluded that he had just turned 75!  Sometimes I can’t believe how old he really is (especially because I still feel like I’m fourteen), largely because he just doesn’t look that old – which, of course, I attribute to the dementia.  He’s been suffering for so many years now, I suspect since his late fifties, and has come to seem somewhat ageless to me.  And, of course, it is hard for me to think of him as my father, in terms of a ‘parent’, because I have been deciding and running his life for so long. I usually don’t think about it, but I realized that I really don’t know what having a normal, 75 year old parent would be like. 

75 isn’t actually that old anymore, with people living into their 80’s and up, but I have no real idea what Dad would be like as a normal 75 year old.  I imagine that, were he healthy, he would still be travelling and skiing and investing robustly.  I just don't know what it's like to have parents this age.  Many of the people that are close to my age still have at least one functioning parent in their 70’s, although they are slowing down in many cases.  A friend of mine has just started to have to care for her mother, who I think is in her early 70’s and who until recently was independent and living on her own.  I, of course, know exactly what that is like since I’ve been doing it for ten years, now, but it seems odd that it is happening to her.  It appears that I’m at last starting to fit into my age group – or my age group is starting to fit in with me.

The 75th birthday is a big deal and in the old days, I would have baked him a cake, made him dinner, and bought him a tool that he already had three of.  Unfortunately, he passed this milestone unknowing and uncelebrated, since even I didn’t remember.  Dad will continue to move forward in age chronologically, but move backward cognitively.  There will be more birthdays he will not know about and I will forget to acknowledge, because there is no more reason.  Sometimes it seems like such a waste.  Dad turned 75 this summer – I just wanted everyone to know.

Tuesday, August 20, 2013

Thank You!

For the second year in a row, I have been greatly honored by  They voted my blog one of the best 25 Dementia blogs on the web for 2013 and I'm so excited and pleased!

When I started this blog, it was to support and be a platform for my book.  I would never have expected that it would be the blog and not the book that became a success but I'm certainly not complaining!  The blog has fulfilled my original goal of getting support and information about dementia, caregiving, being a younger caregiver, and family relationships and has far surpassed it.  It has also allowed me to also create a website that I hope will be a center of information and support as well.

I'm so grateful for everyone who has visited and enjoyed and commented on a post or piece of information that they found enlightening, empathetic, or entertaining.  I have another book about caregiving in the pipeline, and I imagine there may be more books in the future, however, I plan to always maintain this site that has not only brought me a great deal of pleasure but has also helped me to make connections with other people in my field.

Thank you again to for giving me such a great shout out and thanks to caregivers and families everywhere who are doing the most challenging of jobs with great courage and compassion.

Monday, August 19, 2013

No Room At the Inn.

There are a few questions I hear over and over and over.  One of them is, "Is this behavior - swearing, hallucinations, paranoia, anger - normal"  Another is, "How and where do I find a good doctor for my loved one suffering from LBD?  Nobody seems to know what it is!"  One of the ones I hear the most and get the most angry about is, "How do I find a facility for my loved one? No one wants to take him/her!"

When I hear the phrases, 'Memory Wing', or 'Dementia Wing', or 'Alzheimer's Care', or even, god help me, 'Reminiscences', my assumption is that these places will actually accept people with dementia, or Alzheimer's, or whatever.  You know, those people that can no longer 'reminisce'. That is what their name implies, is it not?  And yet, I constantly hear about families that have tried to place their care-taker in a designated dementia facility only to be told that they don't accept Lewy Body dementia, presumably because of the added behavioral issues!  I guess facilities only want the stereotypical little old demented ladies who crouch in their wheel chairs, don't move, and never give any trouble.

I faced this problem with Dad four years ago.  After his little 'incident' at the facility where he lived (in the dementia wing, I might add, where one would presumably expect dementia-like behaviors) the staff watched him so intently, which made his behavior worse, and made their reluctance to keep him so obvious, that I had no choice but to look for another home for him.  Not to mention that a smaller, less stimulating, quieter environment is proven to be better for LBD sufferers.  I worried that we wouldn't be able to find one that would accept him once they heard about his history.  Fortunately, the dementia gods were smiling on us and we found a lovely owner of an Adult Family Home who already had a lot of experience with men and LBD, but many other families are not so lucky.

It is a common refrain from the caregivers I meet that one facility after another has turned them down and it makes me wish I had more help for them.  I tell people to look for Adult Family Homes, or Board and Care Homes, or whatever they are called in their area - even smaller facilities, if necessary - because they are privately owned; have a better staff-to-caretaker ratio; and are smaller, cozier, and less over-stimulating.  In addition, they are more likely to be willing to take people with difficult needs and behaviors.  Some of them aren't able to take Medicaid or other government payments, which makes it difficult for lower-income families, however, they are still my preferred option if the family can manage it. 

I know that many facilities are often doing the best they can with not much money, not enough caregivers, and too many care-takers.  It is not easy taking care of agitation and aggressive behavior from a few patients when, at the same time, one is trying to feed, clothe, bathe, and care for many others.  But I can't help feeling angry that these places are advertising for dementia patients, without being willing to actually take on dementia patients.  What other option will a low-income family have other than care in the home, which may or may not be the best solution?  This problem is only going to get worse, as more people age and are struck by these terrible diseases - we need a better solution.

Tuesday, August 13, 2013

Kindnesses and Coincidences.

Yesterday, I received a phone call from an old friend of our family's, Nancy.  She attended the same church we did and I grew up with her son and daughter in Sunday School.  Although I didn't care for many of the adults at that church, I did like her, and I especially liked Nancy's mother - a cozy, sweet woman who seemed like the epitome of grandmother-ness and who taught my Sunday school class in my teenage years.  She and I had many quiet and private chats about life, growing up, and religion, and she was very understanding when I told her I no longer believed in Christian Science.  In fact, I considered her a mentor and was especially honored to be trusted to house-sit for her when she was away, as well as taking care of her little dog, Happy. 

I hadn't spoken to Nancy for years and was surprised and touched when she told me the reason for her call.  She had heard through the Church grapevine that Dad might still appreciate some letters and she was calling to see if that were true, since she was in the process of writing to a few other people in need of contact and wanted to include Dad.  It quickly came out that her mother, my mentor, was also being gently eclipsed by the effects of dementia and I commiserated with her.   Apparently, she still recognizes Nancy, although not very many other people, and seems to be quietly and slowly slipping away.  What was even more coincidental was the fact that she apparently lives in an Adult Family Home practically across the street from my father's! We could have been waving to each other on our visits, if only we had known.  It did make me sad that such a vibrant, compassionate, sparky woman should have to suffer such a difficult fate.

After talking a bit about Dad's progression and status and decided that while letters may not have been appropriate, post cards would give him a picture to look at.   I thanked her for her kindness in thinking of Dad and spending what I'm sure was valuable time doing such a nice thing.  She is about twenty-five years older than me, and, of course, has known me since childhood, but for the space of that phone call, we were just two women, caring for our parent with dementia, exchanging our experiences.  It was nice to catch up and hear that voice from the past.  We also made arrangements for me to visit her mother some time, and she was quick to remind me that I probably wouldn't be recognized, forgetting that I had just told her I worked with people with dementia and their families all the time.  It sounded as if she had prior experience with people wanting to visit, then being disappointed at not being remembered!

As I've written before, I'm not sure what Dad thinks about mail and the cards I, and others, send his way.  When I visited him today to say hi (and drop off zucchini bread), I saw birthday cards from his sisters, set up on a side table.  Does it matter anymore, I wonder?  Is it only to soothe our own feelings that we send these missives, or does the staff read them to Dad, and does he take some kind of enjoyment from them?  We may never know.  I think I do like knowing, however, that the number of people thinking of Dad has grown by one, and that she will keep him in her good thoughts in the same way she keeps her own parent.  Nobody wants to be forgotten, and perhaps that is why it is good to still send messages and cards, in hopes that some part of our loved one will know they haven't been.

Wednesday, August 7, 2013

Summer Reading.

In keeping with my continued work this summer with the Grief Group, I've been doing a lot of reading around loss, bereavement, end of life, grief, etc.  (Because what is summer without a little light reading?)  I have found a few of the books to be really valuable, helpful, and easy to relate to, so I'm going to review them here and on my website.  I hope you find them helpful, as well.

When Parents Die, Rebecca Abrams.
I have read a lot of books about grief and loss, including quite a few on losing a parent, and this is hands down the best one I've read.  The lovely thing about it is that it's really applicable to the loss of any loved one, not just a parent. The other lovely thing about it is that while it is ostensibly geared toward children and young people who lose a parent, an adult having just suffered a loss could read it and absolutely feel understood and comforted.

Abrams knows whereof she speaks, having lost her father and stepfather almost within the same year; a year during which she was attending University and struggling to begin an adult life.  She describes her story, feelings, and experiences, as well as those of other subjects, so well and so clearly that a reader can completely identify and feel understood.  She describes the different kinds of losses it is possible to experience - public, private, other changes - and how they can persist and need to be acknowledged.  She also discusses mourning and its progress and includes ways to live through it.

"Getting on with life does not mean you must forget all about the past, but rather that you  must make a place for the past in the present and the future."  I like this so much more than the accepted 'get over it.'

This is a book you could give a young person, a teenager, someone in their 20's, 30's, 40's, and on and feel sure you had given them something comforting and helpful.  The author is British, although I found the book easily on Amazon, and all the resources in the back, while good, are only applicable to the UK.  I highly recommend!  ****

Living at the End of Life, Karen Whitley Bell.
I really liked this compassionate, friendly book about what to do when you've reached the last few months with your loved one.  It is informative, explanatory and easy to read, and dispels some of the myths and misunderstandings about hospice care.  I found that Bell really knew her stuff; her book was relatable and gave easy to understand advice and explanations about what the end will look like and the steps families might want to take to make the experience as comfortable and smooth as possible.

 If at times a wee bit precious and smug, and possibly even condescending, the author certainly has the chops to frame her book however she likes.  She has obviously put in the time experiencing end of life events and issues with individuals and families to be able to speak about her subject with confidence.

She gives a lot of really good, easy to understand information, that someone going through the process can refer to again and again.  For those of us trying to spread the word about the many benefits of hospice care, this book is perfect. ***

The End of Your Life Book Club, Will Schwalbe.
Changing gears just a little, this is a memoir about Schwalbe's experience with his mother's illness and end of life and the ways they connected as her illness progressed.  Both Schwalbe and his mother are obviously cultured and erudite, and they love books, so they create their own book club to be discussed during his mother's long chemo appointments.  Each recommends their favorite books to the other throughout and discover at the same time that they are sharing parts of themselves.

Most of the books they read are deep, heavy, complex, or all three, although many are also classics.  Although I found I had only read one or two of their choices due to my proclivity for lighter fiction, I did go on to read, and enjoy, a few that they recommended.  I appreciate that Schwalbe shares his experiences of grief and loss, because they are so common to all of us.

What is really lovely, however, is sharing their relationship as they progress through the years, and events, of terminal illness. You get to know Schwalbe, his mother, and their family, and live with them through a brief time.  I really enjoyed this memoir and I recommend it.  ***

Don't forget to tune in to the Alzheimer's Foundation of America's Care Connection Teleconference on Thursday, September 12, 2013 from1:00 p.m. - 2:00 p.m. (ET) to hear me speak and/or speak to me!

'This free teleconference is designed for both family caregivers and professional caregivers of individuals with dementia. Joy Walker, hospice worker, bereavement counselor, and author of "Three Years and Thirteen Dumpsters" will discuss "Living Choices at the End of Life." Call toll-free: 877-594-8353. Guest identification number: 46692951#'

Friday, August 2, 2013

Grief Stories.

I am co-facilitating a bereavement support group this summer made up of people who are approaching the first anniversary of their loved ones death.  One of the subjects we may be talking about is the story of the death, starting with the diagnosis, if it was by illness, or the news of the death if it was sudden or tragic, and proceeding on through the memorial and the days and weeks after.  This got me thinking about how people tell the story of a loved one's death - how it becomes shortened and distilled into the facts and a few memories that stood out - so that it can be easily told to people who are sympathetic but don't really want to listen to you for a half hour.  The story becomes familiar, rote, something we know and can tell quickly that has come to define a huge and almost unbearable event.

This has particular resonance for me at the moment because we are once again approaching the year anniversary of my mother's death - August 7, 1990.  It has been twenty-three years, which I can hardly believe, and it seems like I have lived at least for lifetimes since that hot summer night when she left us.  Thinking about people telling the story of their loved one's death made me think about the story I tell about my mother's, and the ways in which, I am sure, it has hardened and changed and become rote.  I was inspired to write down everything I remembered from the weeks before her death and the weeks after, an exercise I am not sure I ever really did, since I never attended a grief support group, or got much grief support at all. 

I read a study about memory that said that it is those past events that we think about, or remember, over and over that become ingrained, and the ones we don't really think about often fall away.  The study also said that we change those memories subtly over time, adding and deleting bits and pieces so that what we remember happening probably isn't exactly what happened.  My husband lost his father twenty-two years ago, a good friend lost her brother about fifteen years ago and then her father ten years ago.  I know other people who have suffered loss, and we all have a particular, pithy, compiled story that we tell about those events.

When I read back over what I had written about my mom, I could see that, even though I had really concentrated and tried to remember, most of the details were ones I had always included in the story - although there were a few small new ones I was surprised to remember.  It makes me sad that so much has been lost, so many important details and events and conversations and actions that might now be important to me, that I just can't remember.  I also wish I could remember more about her and how it was to have her in my life, just in general.

I found it to be a helpful exercise, nonetheless, and I'm happy I did it.  After twenty-three years, things start to fade, although you never truly forget, nor do you get over the heartache of loss.   No matter how much others might want us to 'get over it', or shorten our grief-story, I hope that those who have suffered a loss keep trying to remember everything they can about it.  Don't let your grief story solidify too much, or become rote; it belongs to you and it is precious, as was the person you loved.