Guest Post.

I was asked to write a guest post for Autumn Grove Cottage, a dementia care home in Texas that looks just great! Click here to read the post.

http://www.autumngrove.com/blog/how-to-stay-positive-and-manage-stress-as-a-caregiver/

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Newly Alert.

The first time I went to see Dad after we returned from our trip, it was comforting to see everything was the same as I walked in the front door of his AFH.  There was Dad in his recliner chair, muffled up with a blanket, head resting on a pillow, snoozing.  I don’t know if I really thought there would be anything different, any change in him after being three weeks and half a world away, but there really wasn’t, except for one small thing.  He seems a little more alert, which I enjoy but still find surprising.

In fact, before I left, I was starting to see signs of this surprising awareness and alertness.  He had even almost smiled at me during the last few visits.  If he’s snoozing, I really just like to let him do it while I sit there next to him, quietly just being with him.  As I’ve said before, I think the caregivers think I’m a little odd because I don’t really want to talk to Dad, or care if he talks to me.  But, given evidence of this awakeness, I feel like I have to do something about it.  Give him something to do, as it were.  So I’ve been reading aloud to him a lot more.

On this visit, I picked up the Bible that is in his room and started reading out various Psalms, starting with the 23^rd, which is really the only one I’m familiar with, and let’s face it, is everyone’s favorite.  I’ve looked through the rest of the Psalms to find good ones to read and I have to admit it can be difficult since many of them are pretty violent!  I try to make sure that Dad only gets positive input, so I try to skip over the stanzas that deal with the death of David’s enemies, etc.  I also turned to the story of Joseph and his brothers, which is another one I think Dad would be familiar with, and by the time I left had gotten through half of the story. 

The Bible is one of those modern translations that sounds like today’s English, which I find a little annoying.  I figure that I should read what he’s most likely to recognize so I think I’m going to have to find a trusty King James’ Version, which Dad and I are much more familiar with.  I hope he’s enjoying himself and that some part of his brain recognizes words that he read over and over in his life.  I don’t know how long this alert period will last, but I’m going to try to take advantage of it for as long as it does.  I hope these words give him some comfort.  What gives me comfort is looking up from reading to find his eyes on me, intent, and to feel that he might feel some sort of connection to me.  

I’m really glad I’ve been spending more time with him lately.  I am almost 100% certain he no longer knows who I am (and good heavens, but I’ll be happy when people never ask me that question again!), which is just part of the deal.  I do think that since I’ve been visiting more often, he recognizes elements of my face, even though there is no real connection to who I am or how I am related to him.  So its nice to see just a little bit of recognition when his eyes meet mine and I smile at him and get a little smile in return.  And who really knows?  Perhaps he knows exactly who am I and he’s just keeping it to himself. 

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Re-post from Care2.com.

Over 35 million people worldwide struggle with Alzheimer’s or some other form of dementia, according to the World Health Organization (WHO).
Yet, despite the prevalence of Alzheimer’s, there’s still a powerful, stigma-fueled taboo attached to the disease.
In the minds of most, Alzheimer’s is a slow death sentence that gradually morphs a vibrant human being into a pitiable shell of their former selves—a zombie-like figure, sitting in a chair and staring out the window. Those with the disease hesitate to divulge their diagnosis to friends (and even family), for fear of being subjected to unintentional prejudice and isolation.
But the only individuals who really understand what life with Alzheimer’s is really like are those who are living with the disease—the patients, and their family members.
A few of these incredible men and women have decided to share their real-life experiences in Fade to Blank: Life Inside Alzheimer‘s, a story that explores the human side of Alzheimer’s through the eyes of three different families. Their hope is that, by offering their insights, the world will gain a better understanding of the truths of the disease.
Here are just a few of the illuminating things they have to say about their battle with Alzheimer’s:

• “It was like a weight lifted off my shoulders.“ Rick Phelps, diagnosed with Early-Onset Alzheimer’s Disease at age 57, discussing how he felt after his neurologist informed him of the truth of his condition.
• “I live it one day at a time.“ Phyllis June Phelps, wife of Rick, on how she handles the reality of her husband’s disease.
• “What’s happened with my telling people about my Alzheimer’s has been an incredible deepening of relationships.“ David Hilfiker, remarking on how going public with his diagnosis has been so beneficial to both him and his loved ones.
• “I just hope I’ll never become so embattled as to lose my love.” Marja Hilfiker, David’s wife, on facing an uncertain future of caring for her husband as his cognitive capacity declines.
• “My perception has changed a lot since Mom was diagnosed. I always thought of an old person, in a wheelchair, staring out the window.” Michele DeSocio, talking about how much she’s learned about the truths of Alzheimer’s while caring for her mother, Jean.
• “Today is the best day I could ever have.“ Rick offers his philosophy on making the most out of each day.
• “You can’t pretend it’s not there.“ Phyllis June on why denying the existence of Alzheimer’s is unproductive.
• “It’s very painful to look at this woman you love and to know what’s coming for her” David’s biggest fear is the impact his disease will have on his wife’s life.
• “It didn’t feel like the disaster that we had always considered it.“ Marja was surprised by how she and David were able to accept his diagnosis and make a plan for the future.
• “It’s a terrible disease, but there’s a lot of good left in life. You’ve got to learn to adjust to their world.” Michele on how she has learned to find the light inside the darkness while dealing with her mother’s disease.

To take a journey with Rick, Phyllis June, Michele, Jean, David and Marja as they navigate the uncertain world of Alzheimer’s disease, visit www.fadetoblank.org.


Read more: http://www.care2.com/greenliving/10-quotes-that-will-change-the-way-you-see-alzheimers.html#ixzz2lD5IwGEG

More Book Reviews!

My Mother, Your Mother: Embracing ‘Slow Medicine,’ the Compassionate Approach to Caring For Your Aging Loved One, Dennis McCullough, MD

I really enjoyed this book, once I relaxed into his slower pacing and relaxed style, which I suppose reflects what the book is trying to say.  McCollough acknowledges first of all that we are, in fact, heading towards a geriatric/dementia based crisis because of advances in science and medicine, which has allowed our elders to live longer than ever before.  He contends that the care model we have been using is broken and a stop-gap and that something new needs to be created.  Using his own family experience, and stories from many of the families he has either treated or been in contact with, McCullough argues that families can create a more relaxed foundation for how to deal with the last years of their loved ones’ lives.  By being prepared in advance for the almost-inevitable illness, decline and death; by gathering information and having plans in place; and by fostering awareness and communication, not only throughout the family unit, but also into the patient’s medical and care community. 

McCullough takes the reader through a stage by stage outline, made up of what he calls the Eight Stations of Life.  The Stations start at Stability, make their way through Compromise and Crisis to Decline, Death, and Grieving.  Each Station describes the decline of a loved one, with a problem or issue to prepare for followed by solutions, information, and ways to arrange care and support.  He argues that, in this way, a crisis will never truly arise, because plans and back-up plans will have been made and people are prepared, for the most part, for what is coming.  I really enjoyed the comprehensive-ness of each Station and how neatly he has divided up each stage of life.  I also liked that he referenced the major illnesses and/or physical problems that occurs with age, giving us a short medical lesson.

I can really appreciate his viewpoint, because if there’s one thing my family didn’t do – which is the thing I urge everyone else to do – is be prepared in some small way for what you know is coming.  Gather information ahead of time, plan ahead, give yourself some options before you ever need them.  Even if your loved one is in denial and fiercely negative of the situation, you will have armed yourself with a few preparations.  In addition, try to start having those difficult conversations now – we all know what the future holds for us, and we have allowed issues like aging, illness, how we want our affairs handled, and how we want to die to become taboo, difficult issues, when they don’t have to be.

While I think McCullough can be a little optimistic on how easy it is to form a community of helpers, including how much family, friends, and neighbors will want to be involved; and he can gloss over how difficult having these conversations, and making these decisions and changes can be – I do believe he has the right idea and is on the right track.  He advocates a measured, prepared, hopefully crisis-free approach, which I think could be achievable given enough advance warning and thought.

 The Long Hello, Cathie Borrie

This is not your run of the mill dementia memoir and I should know because I’ve read a lot of them.  Borrie has chosen to style her book almost as memoir in poetry form – using short essays and very descriptive passages to convey events, conversations, and memories – both her own and her mother’s.  She weaves those memories together until it becomes almost her family’s memoir, not just hers or her mothers’.

Borrie combines elements of her own childhood and adult memories with conversations she and her mother had during the final years of her dementia.  Borrie recorded these conversations or wrote them down, conversations in which she asks her mother questions about what she remembers or feels.  Borrie also records questions that her mother asks her, and her mother’s response to her answers.  Her mother’s responses are often nonsensical, sometimes sad, but almost always poetic and touching.  The reader is left wanting more information about what were obviously terrible and impactful events, but the shortness of each essay provides only so much and no more.

Borrie’s recollections of her own life experiences, especially those that involve mother and her mother’s second husband act as a foundation to explain the loving, complex, and melancholy relationship she and her mother share, and the emotional bond that still persists into cognitive decline.  She manages through short exchanges and paragraphs to convey her love for her mother, the events surrounding the difficulty of dementia, as well as the relationships she has during her mother’s illness.  

Many reviewers called the book lyrical, which I would definitely agree with.  I don’t think it’s the right book for a caregiver with very little time, who is seeking immediate support and information – there are many other memoirs I would recommend in that case.  But the book isn’t terribly long and if you’re in the mood to wander through a story for a little while, this might be a good choice.

Differences In How We Are Dealing - English Experiences, Part. 3

Before I went to the UK, I had some information about the events, actions, and organizations there that are involved with aging, dementia, and end-of-life.  The Lewy Body Society is the UK version of the US Lewy Body Dementia Association, which I am affiliated with here; there is an Alzheimer’s Society, similar to our Alzheimer’s Association (it seems the British option is to use ‘society’ while ours is to use ‘association’); and, of course, the modern hospice movement has its origins at St. Christopher’s Hospice, which Cicely Saunders helped to found.  So, one goal I had for our trip was to do see if I could do some research or get some personal experience about Britain’s response to dementia.

Britain is leading the pack in many ways in their response to dementia and the issues of caregiving.  They are starting to legislate pay for family caregivers, and are including their living and healthcare costs into the amount of money they will give someone with dementia to arrange for care.  In other words, family caregivers are seen as one of the ‘benefits’ that the government must provide for the elderly and infirm – a win-win scenario for everyone.  Britain’s Prime Minister has also issued a challenge on dementia, which includes an ambition to create communities that are working to help people live well with dementia. 

Called ‘Dementia-Friendly Communities’, this is a movement that helps cities, towns, and villages – communities, in other words, to create a high level of public awareness and understanding so that people with dementia and their care-takers are encouraged to seek help and are supported by their community. Such communities are more inclusive of people with dementia, and improve their ability to remain independent and have choice and control over their lives.  Many villages, towns and cities are already taking steps towards becoming or have an ambition to become dementia friendly, providing services and companionship to those who are confined to their homes; finding ways to include those who are elderly or suffering from dementia, and their caregivers; and providing acceptance training to community residents about dementia and how they can help.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1843

I think this is such a great idea, and I was lucky enough to sort of see it in action.  We took an overnight trip outside of London to a town in the Cotswolds part of Britain called Tetbury, and to my surprise, I saw on the windows of several businesses, stickers that indicated this was part of one of the dementia friendly communities!  I did a little more research and came across this great article, linked here, that goes into a little more detail about Tetbury’s actions and goal.  Unfortunately, this does not seem to be a concept that we in the US are embracing yet, but I think it’s a good one.

http://www.wiltsglosstandard.co.uk/news/10465841.Tetbury_residents_learn_dementia_support_skills/

I can’t say that I had much chance while in London to witness anything similar.  In fact, I saw very few older people and/or people with disabilities.  I was looking for them because I am disabled and I was curious to see how they moved around such a difficult city.  The answer is, they don’t, or, at least, not without a lot of effort and advanced planning.  I had a fair amount of trouble making my way around, and I’m still fairly physically mobile.  I couldn’t imagine how difficult it would be to be elderly, or suffering from dementia in London – or for that matter, be a caregiver – because it is a difficult and isolating place.  I guess we all have a ways to go in how we approach, deal with, and solve the problems of aging, disability, and dementia – both countries.  It is encouraging that there are people willing to think about it and make an effort – even if its just a small village in the Cotswolds.

My Dad and the UK - English Experiences, Part 2.

I have had a relationship with England for a long time now.  I consider myself an Anglophile because I love British novels, and not just those about Bridget Jones, but ones I get online, written by less-well known authors, and I am familiar with a lot of aspects of British life, including places, foods, attitudes, and events.  However, I have also, since early childhood, had a lot of ties with the UK.  It seems that it is almost my destiny, therefore, to have spent three weeks living there this October.

The whole time I was there, I couldn’t help but think about my family and my Dad, who traveled to the UK often for his job with Boeing, who had a partnership with a company there that made airplane components.  I remember Mom packing his suitcase with socks, underwear, and toiletries while he packed documents into his black leather, monogrammed briefcase until it bulged.  I remember walking him to the gate in the North terminal, which you could still do back then, and waving goodbye sadly.  Two weeks later we would be back at the airport – this time in the area outside customs.  From the waiting area, you could, by escalator, get to another floor with windows that overlooked the customs area and my sister and I would ride up there and watch the milling floor below us for my father.  When we saw his distinctive, lanky, suit-jacketed frame, we would race back down the escalator to our patient mother.

At home, he would throw his big suitcase down on the bed where we perched excitedly, knowing he would have magical gifts from that faraway place buried amongst his shirts and socks.  And he did.  My father always took time during what I’m sure were busy and work-filled trips to search out special things for his family.  China teacups and pretty household things for mom, and fun things for us like English comics, books, purses, and once, for me, a Paddington Bear stationery set that I never used up because I treasured it so much.  He started my life-long practice of always bringing gifts back from trips for the people I love – something that seems entirely natural to me.

Quite often, the British company would send workers to the US and I remember my parents hosting them often at our house – breaking out the nice dishes and the French onion dip.  They often brought us special After Eight dinner mints, which you couldn’t get here back then, and which were a huge treat.  We got to know a few of them very well, exchanging Christmas cards and wedding announcements – including one family with two daughters our ages that relocated here for a year, with whom we became friends.

My mother went with him once, on a business trip, when we were maybe seven and nine, leaving us with my best friend’s family, and returning with the exciting whiff of a foreign land.  And, finally, we all went as a family, when I was eleven and my sister was thirteen.  It was a trip I remember well, mostly for all the forced walking they made us do – to landmarks and sights – with not much in the way of lunch.  My mother always averred that after the huge English breakfasts, “we wouldn’t possibly need anything until dinner.” Which was not true.  I remember cramped B and B’s, the London Museum, St. Paul’s Cathedral, and even the beauty of Cornwall.  So it wasn’t all bad and memories from it have stayed with me and enhanced my Anglophilia.

So I couldn’t help but think of my mother and father as I walked the streets and travelled through the Tube, and viewed the Crown Jewels – as we had also done.  I know back then I yearned to be grown up and mature, doing my own thing and being a (beautiful and accomplished) seasoned traveler.  It felt good to come back as that mature (I hope), somewhat attractive traveler, and make some new memories as an adult.  Not to rewrite the old ones because, as I have said, some are very good, but to add to them from an older, wiser perspective.  It felt good to be back in that place to which I have had so many ties for so long.  And when I went to see Dad after we got back, and sat beside him and told him where we had been and what we had been doing and reminded him of our trip as a young family – I hope he heard and understood, and remembered those good things with me.

The Failure of Our Medical System.

I apologize in advance because this post isn’t really about dementia or caregiving, however, it is about living with a chronic illness, which is definitely something I’ve written about here in the past. I may also have written about something similar, but it just seems to need repeating. I feel like I just can’t be the only person dealing with this problem, and I know this because I have a lot of experience with the medical community and their attitudes toward certain prescription medications.  I am quite certain that families dealing with the illness, dementia, and dying of their family members have, at one point or another, had trouble obtaining necessary medication because of the prejudices and problems of a physician.  This is for all those people who have either had difficulty getting medication for themselves or for a family member.

As I’ve said before, I’ve been dealing with Rheumatoid Arthritis since I was twenty-one years old, more than half my life now.  While I’ve learned how to live with it, it definitely affects every aspect of my existence.  I suffer from a lot of fatigue and I am in near-constant pain, and I’ve been on various pain medications for fifteen years now.  I’ve been on my current meds for a year now, and one of them just happens to be one of the most highly-abused and therefore highly-charged ones available. In fact, I have just been told by an on-call doctor (mine being out of town) that one of my prescriptions won’t be filled for a few days despite the fact that I have been out of it for a week.  This doesn’t seem to concern anyone and I felt like a drug-seeker merely for questioning it.  I can only assume that he doesn’t want the responsibility of prescribing these particular meds and is waiting until my doctor gets back to assume it.

I have repeatedly been shamed by the medical community for needing, and using pain meds – it is something I have had to get used to over time.  That, and their seeming inability to truly get the fact that people need pain meds for a very good reason, not just because they are fun to take. Believe me, I would prefer not to have to be on any medication at all – especially these.  Because pain meds have become the drug of choice for so many of the addicted, the federal government has enacted stronger and stronger restrictions on the prescription of pain medication and I have watched on the news as pain sufferers legally entitled to these meds are made to suffer because of the lack of self-control of those who abuse these meds.  This makes me very angry.  I have heard from caregivers about physician’s hesitation to prescribe pain meds to a dying individual out of concern that ‘they will become addicted’ to which I reply, “Who cares? They are old, in pain, and dying.”  Even families sometimes hesitate to request medication for their loved one because they are afraid of what the doctor will think or say.

If it’s not physicians causing difficulties with access to medication, it is the insurance companies.  I have often had trouble getting a prescription legally given to me by a doctor because my insurance company views it as too expensive, or experimental, or not really necessary, or that the generic is ‘good enough’ even though we all know that generics don’t always act in quite the same way as the name brand prescription.  I’ve heard of caregivers fighting for name brand dementia medications in the desperate hope of help for their loved one only to be denied by an insurance company for cost.

We continue to labor under a system of shame and judgment with regard to prescription medications of all kinds.  Those who are lucky enough not to need to use medication seem to have no concept of what a challenge it can be and that few of us are doing it for fun.  We need to change our attitudes and those of the medical community and remove the emotional charge we have placed on what is basically a tool to help those who need it.  I know that changing this system – these attitudes, prejudices, opinions, and cost-cutting decisions – will be hugely difficult and time-consuming.  But if each of us, when the time comes, can stand up to the doctors and pharmacists and insurance companies and fight, not only for our medications but for a change in attitude, maybe we can start to make a difference.