Another New Year.

We are approaching New Year's Eve once again and my thoughts turn to 2014 and what is to come, as well as what I want for myself and my family in the coming year.  I don't believe in resolutions, but I do believe in hopes and goals.  I have a few that I'm going to be working towards this year: finishing and publishing my second book; continuing to create and improve my blog and website; continuing to write for whatever other sites want me; maintaining my support groups and my volunteer work; cementing ties with my friends and found-family; and just being happy. 

My thoughts also turn towards my dad and his gradual, incremental slide away from me and the world. I wonder if this will be the year that I lose him.  Part of me hopes so, as shocking as that might sound to some; I have faith that other caregivers understand what I'm talking about.  I know how horrified and angry he would be at what is happening to him.  I know he would be humiliated at the type and amount of care he needs.  I also know that it is so sad to see his once-active, strong body deteriorate slowly. I don't think he would want to carry on this way.   It is never given to us to know when our final moments, or those of our loved ones, are here, however.  I can only hope his final ones aren't difficult since he's been through so much already.

This coming May will be the tenth anniversary of my moving in with dad and becoming his caregiver.  I can't believe its been ten years!  Things both wonderful and terrible have happened in those ten years, but I don't suppose I would change much if I had to go back and do it again.  I think I would still have chosen to take dad on.  I'm pretty sure making that choice in the first place led to growth and expansion I might not otherwise have experienced. Who would have thought it?

All I can do now is what all caregivers do: take it day by day, keep on keepin' on, live in the moment, and, my personal favorite, hope for the best and prepare for the worst.  I hope that this year is a positive one.  In the new year, I wish for peace, comfort, and relief from pain for dad; happiness and growth for me, my husband and friends; and a moment of ease and love for all my fellow caregivers.

A Smile for Christmas Present.

It's Christmas Eve eve today and I have to say I haven't been feeling all that Christmassy this year.  I feel like I had a whole bunch of other day to day stuff to do, and before I knew it, it was the 23rd! I had to scramble a little bit over the last week just to get the cookies made and the out of town gifts shipped off.  Luckily, I finished my present shopping a while ago!

I stopped by to see Dad during lunch last week, something I usually try not to do since I know they're busy getting all of their people fed.  Dad did not look to be in a good mood that day; he wouldn't look at me, even when I rubbed his back.  He ate his lunch, but it definitely felt like he was elsewhere.  After the meal, they got him up to walk him around the house a bit.  They've been telling me how shaky he is on his feet, and how reluctant he can be to walk, and I really got to see it.  He walked bent over, with his shoulders drooping, feet tentatively finding their way on each step.  So different from the strong, active father I used to know.

I came by for a visit with dad today, as well, to bring Christmas cookies and a gift for him.  I got him a really, really soft blanket that I embroidered his name on that the caregivers can put over him in his chair.  The cookies are ones that my mother used to make which have become a holiday tradition.  I got there just as they were finishing up lunch; the caregiver was feeding dad pieces of melon, which he seemed to be enjoying.  This time when I rubbed his shoulders, he looked over towards me and met my eyes.  I smiled and said hello and he smiled faintly back.  It was nice to feel a little bit of his attention.  I hope there is a part of him that can still taste and enjoy the cookies.

I have to admit that I think I've been feeling a little bit of family holiday sadness, as well.  Dad, of course, will be spending the day in his lounger, and I have no blood family available to spend the holidays with.  It's down to my husband and me, which is fine, but I still feel a little bit sad when I see all the stupid holiday commercials about family togetherness. 

Christmas, of course, will never be what it was when we were children; as adults, we must make our own traditions and special times.  I am lucky enough to have glad memories of childhood holidays - complete with fifteen types of cookie, piles of presents, much-loved ornaments, and my parents always there.  My family will never be what it was, and I am a little sad every year that this is part of what Christmas has become.  I am lucky and grateful for what I do have, however, including a little smile from my dad during lunch.

And Respite For All!

I wrote this post a while ago, but I think it got lost in my folder so I never posted it.  It seems particularly appropriate to post it now, during the busiest, most stressful time of the year.  I wish you all a beautiful year's end and an abundant New Year!

All right caregivers.  Yes, I’m talking to you – those of you who have doing this for a while, and those of you who are new to the job.  What I’m about to say has been said before, many times, but it bears repeating.  We all know this is a rewarding, tough, challenging, maddening, time-and-energy-consuming, wonderful, crazy-making, exhausting, special task you’ve taken on.  We all know that nobody but you can provide the specialized, loving, unique care that your loved one requires; that only you know exactly what they need and how they need it; that they will respond only to you and that you are irreplaceable.  We know this.  But guess what?  You are replaceable – at least for a short while – and finding this out may be exactly what saves you and your loved one later on down the road.

Respite care is simply that, a person, organization, or facility that assumes care of the care-taker for a brief period of time so that the caregiver can have a break.  Respite care can be as informal as a family member or friend stepping in for a few hours, or as formal as a facility taking physical charge of the care-taker for a few hours to several days.  There are hourly adult day care/health programs in most major cities and there are usually area facilities that provide short term care.  Why is this so important?  Because caregivers can’t be everywhere all the time doing everything.  It’s just not possible.  When I was living with Dad in the earlier stages of his dementia, he went once a week to an adult day program where he attended a support group for men, was given lunch, and did other projects and activities.  It was good for him and vital for me to have those few hours to myself.  In addition, an old family friend took him for a few hours each week; they went to lunch and did other activities, walked her dogs, or worked on her garden, and he loved the interaction.

Studies (and my own personal conversations) show that family caregivers are reluctant to use respite services, often for very good reasons.  Ranging from lack of money for services to guilt at taking time for oneself to fear that one’s care-taker will be upset or agitated to fear of bodily harm and abuse – all of these are legitimate issues.  However, the reasons to USE respite care are even better.  The most important is that caregivers who get a few hours a week away from their duties are healthier, happier, and better able to do their job – it’s a proven fact!  In addition, respite activities can provide outside stimulation and interaction for a care-taker.  One of the most important reasons to use respite care is the fact that there will most likely be problems of some sort during your tenure as a caregiver that you will have to address – having an established relationship with a place or person that your care-taker trusts and likes so that they can be cared for in an emergency can be priceless.  I urge you to locate the programs and/or facilities in your area that provide this type of care – you and your care-taker will be better off!

Check with these organizations and sites for ideas and resources for finding care in your area.

The Family Caregiver Alliance runs a resource center and publishes fact sheets and a newsletter with tips for family caregivers. The organization can be reached by calling 1-415-434-3388 or visiting its website at    http://www.caregiver.org

Information concerning adult day services can be obtained from the National Adult Day Services Association at (703) 610-9005 or by visiting their website at:

• http://www.nadsa.org

To find out more about programs where you live, you can contact your local aging information and assistance provider or area agency on aging (AAA). The Eldercare Locator, a public service of the Administration on Aging (at 1-800-677-1116 or http://www.eldercare.gov ) can help connect you to these agencies.

Brave New Booklet!

Here is a link to a new booklet co-authored by the National Institutes of Health and the LBDA.  It is a comprehensive, easy to understand, and really helpful guide for patients, families, and professionals who are encountering LBD.

One of the main problems I hear from caregivers is that their doctors and other healthcare providers haven't heard of LBD or don't have much information about it.  I hope this booklet will change that somewhat so people can get the support and care they need. 

I believe you can download it and/or order it in booklet form. I will also post the link permanently on the sidebar of my blog.  I was picked to be on the team of Caregiver Reviewers who looked it over before publication and it was an honor to be given the chance to help future caregivers!  Let's hear it for spreading information!

http://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia

Making A Smooth Transition To An Alzheimer’s Assisted Living - Autumn Grove's Guest Post.

The day has come to move your loved one into an Alzheimer’s assisted living. Your family has weighed all options over the past couple of weeks and you all have agreed that this is the best option for your loved one. Now the actual day of move-in is here and everyone is nervous about how your loved one will react to his or her new home. Here are some tips to help make the transition go as smooth as possible for both your family and your loved one: 

 

1.     Constant communication is key. In the weeks leading up to your loved one’s big move; bring it up in light conversation. Make sure they understand, as much as they can, what their new living situation will be.

2.     Having all family members involved in the process will be most comforting to your loved one. If your whole family speaks in a positive manner about the Alzheimer’s assisted living to your loved one, it can help them feel comfortable about the move.

3.     Try to keep your loved one’s opinions and preferences in mind as much as possible when deciding on an Alzheimer’s assisted living. Remember, this is going to be their new home away from home. The more comfortable they feel about their new place, the easier the transition will be.

4.     Taking tours of multiple Alzheimer’s assisted livings will help your loved one see first hand the choices they have in rooms, activities, food, staff and residents. Allowing your loved one to get a feel of the assisted living before moving them in will help them feel more at ease on move-in day.

5.     Once your family and loved one have chosen a home, take the time to meet staff and residents before making the move. This way, everyone will get to know the people they will be seeing and interacting with every day, and it will help make the transition smoother.

6.     After your loved one is moved into the Alzheimer’s assisted living, it is important for you and your family to visit often. Spend lots of quality time with your loved one in their new setting. They may be feeling afraid that you are going to forget about them.

7.     Encourage your loved one’s friends to visit them as well. Having familiar faces will help make the transition less stressful.

 This can be a stressful time for your loved one and your family. Take time to talk to each other and remind your loved one that moving them to an assisted living will give them the best care they need. If you can, try and keep a routine of visiting your loved one to give them something to look forward to each day.

This post was written by Abigail who is a member of the staff at Autumn Grove Cottage, an assisted living facility specializing in cases of Dementia including Alzheimer’s disease. Autumn Grove Cottage is located in  Houston and San Antonio, Texas. Check out their website at www.autumngrove.com and see what they have to offer if you live in their area.

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/

Don't forget to vote!

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. 

Please vote for me in Healthline.com’s competition!  Every vote counts.

Election Season!

Well, technically, we just got through the country's election season, but I'm talking about Healthline.com's Best Health Blog of 2013!  I'm grateful to be nominated by Healthline.com once again and I need your vote.

Click the badge to the right and make your vote - you can look my blog up alphabetically.  Thank you for exercising your constitutional right!

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.

English Experiences, Part I.

My husband and I just got home from an extended stay in London, England.  It was a truly great trip, and I have to say I’ve come back changed, even if just a little – the result of living in and experiencing a different culture, and dealing with my chronic illness, and duties as a caregiver while being there.  The purpose of the trip was partly as vacation and something we’ve wanted to do since we met, but it was also something of a working holiday for both of us.  I went with the desire to see the dementia/caregiver/aging/disabled person/hospice experience in the UK, and how it might be different.  I’ll be writing several blog posts about my adventures.

In the last few years, pretty much since I became Dad’s caregiver, I’ve worried every day about getting that call.  It’s something every caregiver can understand.  We all flinch just a little whenever the phone rings, because we’re worried its going to be about our caretaker in some way – some person to tell us the worst has happened and our presence is needed.   Every time I’ve gone out of town in the last seven years, I’ve toted my phone with me everywhere, and have quietly dreaded getting the call – and, occasionally, I have.  On my first Thanksgiving with my then-boyfriend’s family, I got the call that Dad had an infected boil and needed emergency surgery.   On the trip to Hawaii when I got engaged, I got a call about another illness Dad was suffering – fortunately, this one was less severe, but it still affected the trip.  

The entire six months that we spent conceiving of, planning, and organizing this trip, I thought about Dad and what I would do if I got that call.  I thought about how I would go about arranging for a phone so his caregiver could contact me, and what I could do in an emergency if I needed to fly home.  This was a wonderful trip of a lifetime that I was planning, and yet I couldn’t enjoy the prospect of it fully because I was always thinking about worst case scenarios.

When we got there, I got a UK SIM card for my phone within hours of landing so that I could receive calls and check my voicemail until such time as I could contact Dad’s caregiver with the number.  When I did finally reach him, I felt some of the weight slide off my shoulders, knowing that he could now talk to me as needed.  But the weight never fully slid.  Every time I checked my voice mail and there was no message, I breathed a sigh of relief – until the next day when I checked it.  Every day that went by without a call about Dad, I was happy, until the time when we were getting on the plane to fly back home.  In the end, I never got the call, for which I am deeply grateful.  I am also deeply grateful for the wonderful care he receives that made it possible for me to even contemplate going so far away.  

Being a caregiver with a loved one always on my mind certainly didn’t ruin our trip – I still had fun and learned a lot – but it absolutely affected it, and I know this will be the reality for the rest of Dad’s life.  I’m still waiting for the call – I will until Dad leaves this world – and I know caregivers everywhere know exactly what I’m talking about.  

Are You Tatooed?

Healthline.com asked me to post this in regards to their new campaign.  I, personally, don't have any dementia or Alzheimer's-inspired tatoos, but I think it's a fun idea.  Go online and check it out!

In honor of National Alzheimer's Awareness Month, Healthline is inviting individuals to send us photos of their Alzheimer's-inspired tattoo along with a brief description of the inspiration behind the tattoo.

 http://www.healthline.com/health/alzheimers-disease/tattoo

We will be compiling all of the submissions and sharing them with our Facebook page: https://www.facebook.com/healthlinenetworks

To Your Health.

I just saw a post on the blog, Alzheimer's Reading Room, which I link to here: http://www.alzheimersreadingroom.com/2013/10/do-family-caregivers-experience-greater.html#more

The post quoted a study that refuted the belief that giving care to an ill family member can adversely affect the health of the caregiver, and possibly shorten their life expectancy.  The study found that caregiving actually increased life expectancy and led to better self esteem among the caregivers studied.  This goes against other studies I've seen as well as traditionally-held, and anecdotal reports from caregivers I've spoken to.  There are also statistics that show many caregivers dying before their caretaker!  What are we to believe?

Many of the caregivers I talk to whose duties are over due to the death of the caretaker reported that they fell ill with sometimes serious illnesses almost immediately after the death.  I also hear stories from current caregivers about serious injuries, autoimmune diseases, and worsening of chronic conditions like diabetes and heart disease.  Problems that they aren't always able to address due to the time and/or money constraints of being a caregiver.  These stories seem to refute this study.

The whole time I lived with Dad, I worried about my own chronic illness and whether it would become worse while I was his caregiver.  My duties were not too onerous owing to the fact that he was still fairly lucid at the time, but the extra housekeeping, cooking, shopping, walking, and care was a bit of a strain.  I was also worried that the emotional repercussions of caring for him after he had neglected to care for me would cause me to become ill.  I definitely navigated a difficult balance between my duties and desires to help him, with the necessity to maintain my own health.  I was lucky enough to be helped along the way by my therapist and my doctors. The fact that I was able to find two excellent facilities to care for him as his illness worsened helped as well; there is no way I would have been able to withstand the physical and emotional exertions of caring for him now that the disease has worsened and he needs much more care.

I urge every caregiver I speak to to take care of their own health, to look after their own well-being, and not to wear themselves down.  I also know that everyone I say this to may, or may not, be able to follow my advice because their duties are just too much.  While I'm glad that studies of caregivers are being done at all - lord knows we need all the help and information and attention we can get - I also know that they don't always tell the whole story.  Statistics have a funny way of supporting almost every viewpoint depending on how they are interpreted.  Studies like this need to be weighed against the very  real responsibilities and problems of caregivers so that the whole story can be told; and we need to continue to make sure that caregivers are getting all the support they need.

Whoopi!

Whoopi Goldberg has recorded a new informational video about Lewy Body Dementia that the LBDA has asked we bloggers to post on our sites!  I hope you enjoy it!


http://www.youtube.com/watch?v=FcSYg4xtVus&feature=youtu.be&utm_source=Whoopi+Goldberg+Promotes+LBD+Awareness&utm_campaign=Whoopi+Goldberg+Announcement+E-mail&utm_medium=email

Halloween Re-dux.

 Because I am out of town this week, I am re-running last years October/Halloween post, which I hope you will like.  There will be a new post next week about my experiences with British hospice/dementia care.  Enjoy!


It's Halloween, one of my most favorite holidays, and it always makes me think about both my Mom and my Dad. I used to love to dress up and every year, months in advance, I would decide what I wanted to be and my Mother would make my costume. It was pretty amazing now that I think about it - she was very creative and could put together most of the costumes I asked for. Granted, I usually wanted to be something like a gypsy or Indian princess, or something, but it was still pretty fantastic. I used to love the way Halloween let you be different than you were; you could be anything or anyone you could imagine yourself being. In Third grade I was Wonder Woman, complete with eagle-covered, red bustier, bracelets and lasso. It was great - god, I loved that costume! One year she transformed my sister into Princess Leia with a silky white, seventies-style dress she had, a silver belt, and even the two hair rolls.


Mom actually loved Halloween, every year for dinner, she made hotdogs and her special donuts, with apple cider. She would make sure I got my costume on, including the layers of tights, long sleeve shirt and even jacket, that no kid wants to wear, but which every mom insists on, because for heaven's sake, its cold out there! My Mom was very petite, about 5 feet tall, with little hands and feet. She was so small, and she loved Halloween(and candy) so much that she would dress up, making sure to cover her face and hands, and go trick or treating herself! Occasionally, Dad and I would see her going from house to house and he would never admit that it was her, even though I was sure it was. It was just one of the funny things she did.


Every year, I would wait for my Dad to get home, and he would take me and my best friend out trick or treating. We lived in a neighborhood on a really steep hill, and we would gradually make our way up the hill, stopping at each house. It was a special thing that we did together, something that didn't happen often since he was usually so busy with work and other things. I think Dad really enjoyed taking me out and seeing me knock on each door while he waited at the end of the driveway, and I knew that for at least that one night the dark moods and depression and disappointment he felt so often through the rest of the year would be banished and we would have fun, and connect.


When my stepdaughter was little, I loved to take her trick or treating every year. We had so much fun and it was a way for me to connect with my Father and the fun we used to have as we went from door to door, saying the traditional words to fill my bag with candy. My mother is gone now, and I never miss her more than on these holidays that she made so special. My father is still with me, in body if not in spirit, and although I'll go see him on Halloween to bring him some little candy bars, the man who used to keep me safe in the darkness as we flitted from house to house is gone.


I have complicated and sometimes ambivalent feelings about my childhood and my parents; things were often very dark and confusing for us. But I'm so glad to still possess these moments of gladness and fun, these memories of how my parents tried to be there for me, in ways as simple as making a costume and taking a little girl trick or treating.

Flight Controls.

We were waiting on a plane to fly home from Las Vegas a few weeks ago when my attention was caught by the wing of the plane.  I sat there, watching idly out the window as the pilot tested the flaps and revved the engine, and it made me think of Dad.  He was an engineer with Boeing for twenty-five years, working on many different planes and many of the different systems that make up a plane.  For a few years he worked on the Black Box, then moved to flight controls, and even to testing, going up in the prototype planes all day while the pilots took off, landed, circled, tried to get lost, and generally tested the systems he had designed.  In fact, as the dementia moved in on him, this was the one thing he remembered about his work and he would tell me the story over and over.

Every time I flew with him, he would check out the airplane and tell me about the various systems and workings.  His favorite moment was always when the plane was racing down the runway, preparing to take off.  It seemed as if he knew everything there was to know about planes.  One time I asked him about designing and changing things and asked how they knew something would work or not.  He explained about the calculations involved and the physics and math formulas that would tell you whether or not a system would work or a wing could take weight and stress.  He told me that before computers, of course, they had to compute the formulae by themselves with the help of slide rules and blackboards.  As I sat there, I remembered that conversation and also that when I cleaned out the house I had unearthed his slide rule – a strange, archaic, yet fascinating piece of machinery that I could never hope to decipher.  

Plane wings are a modern marvel, actually.  Flaps go up, sections come down, a wing’s entire structure can change so that flight – and landing – can occur.  A wing can become small and aerodynamic to promote quick motion, or it can become bigger and bulkier to aid slowing down.  As I sat there, a few questions occurred to me – things about structure and flight I was suddenly curious about.  And for a few seconds I thought to myself, “I’ll ask Dad, he’ll know.”  And then, of course, I remembered that he wouldn’t.  All of that knowledge and understanding, gone.  We lose so much when we lose someone to dementia - all of their intelligence and knowledge and memories.

 From now on, I’ll have to find out about planes and how they work on my own – thank goodness for Google – but it still makes me sad that Dad will never talk about flight controls again, or the joys of sending a plane off course to test the autopilot, and he’ll never experience the excitement of take-off one more time.