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.

Financial Assistance for Caregivers.

Here is a link to a really great article in Today's Caregiver, at Caregiver.com.  It discusses the problems that American families face in trying to provide for themselves and their care-taker. Here is an excerpt from the article.

"Almost everyone lives paycheck-to-paycheck, and when the extra responsibility of being a family caregiver for a loved one is added to an already costly equation, you’ve got a situation that stretches way beyond anyone’s financial imagination or reality. It’s taken several years for the financial plight of the family caregiver to be recognized, probably because it was always assumed that health insurance and other coverage would pay for any of the medical expenses and other needs of a loved one, which is certainly far from being true. With over 54 million caregivers in the United States (and counting), their collective voices are echoing louder and louder with the cries of financial anguish and despair. The situation has reached a crisis level, with many family caregivers having to choose between paying the mortgage or paying for their loved one’s life-sustaining medicines, unable to afford both. Family caregivers also run the risk of losing jobs and benefits because of their dedication to a loved one who may be terminally ill, physically challenged, aging, or all three at the same time. Although our government is beginning to recognize the financial crisis among family caregivers with the creation of the National Family Caregiver Support Program and the Older American’s Act, we still haven’t gotten past the beginning stages in providing financial assistance for all family caregivers on a national level. Financial help for caregivers still seems to be primarily up to each individual state and/or community, with monetary decisions based upon what can be afforded in the way of caregiver assistance at that particular time."

This is a problem I hear about all the time from the caregivers I speak to.  It seems as if our government is completely behind the times when it comes to the needs and demands of an increasingly aging population and their caregivers.  I give thanks every day that the one thing my father had organized was his financial stability.  I don't know quite how he managed it after the dementia started to encroach on his faculties.  He had been a quite brilliant, amateur investor up to that point, and thankfully was able to ensure that I had enough money to care for him comfortably.  My heart breaks for all the people I speak to who are having to rely on Medicaid and other faulty systems, and who are stressing about finances on top of the loss of their loved one.

We need to come up with better programs and find ways to make existing resources easier to locate and make use of.  The link below accesses the article directly as well as some links on how to find programs in your area that may be of help. I highly recommend checking it out!

http://www.caregiver.com/regionalresources/financial/index.htm

What We Long For.

I am sitting in Seattle’s Frye Art Museum, in the midst of an average-seeming group of people, who are largely in their later years and sitting with a significant other.  We are all focused on the large painting in front of us – a pastoral scene of peasants scything wheat in the countryside.  As the museum guide urges us to take in the scene and tell her what we observe, she tells us that each visit has a theme and that the theme of our program today is, ‘Survival and Meaning: What We Long For’.  I am visiting the museum today to take part in their bi-weekly gallery tour, here:now, for people with dementia and their caregivers, a popular program that helps dementia sufferers engage and interact with the world through works of art.  The Frye offers this bi-weekly gallery tour that anyone can attend, although a reservation must be made, and a very popular artmaking class that takes place for six consecutive Wednesdays throughout the year.  The class includes a gallery tour as well as artmaking and social time.  Both programs are free, but advanced registration is required.

Our guide has been trained in techniques that will help her communicate effectively with dementia sufferers, and elicit interaction and participation. Only an experienced eye could pick out those among the group who suffer from dementia – most of them are in the early or middle stages of their disease.  They call out comments to our guide and make detailed observations about the art we are viewing; everyone is interacting with their partner and other members of the group, and a lively discussion results.  It is obvious that imaginations are being stretched and mental capacities are being used as individuals search for words and explanations. 

The guide tells me that the choice of artwork is important; visual or pictorial paintings, anything around which a narrative can be developed, are preferred over conceptual art, which can be confusing and subjective.  Studies have shown that in the middle to later stages of dementia, imagination is stronger than memory; encouraging dementia sufferers to observe a work of art and develop their own personal narrative about it is a way of allowing them to use those cognitive capabilities they still possess.  More importantly, at least in my opinion, it encourages a feeling of continued connection with the world, with beauty and culture, and with others.  

These programs are becoming more and more common in museums across the country, MOMA being one of the first with it’s Meet Me at MOMA Alzheimer’s project, focused on making art accessible for people with dementia.Through special funding, MOMA’s outreach program has helped develop resources that can be used by museums, assisted-living facilities, and other community organizations serving people with dementia and their caregivers. By conducting presentations and workshops at conferences and hosting in-person and Web-based trainings, MoMA has shared its experiences and resources with people across the country and abroad. 

These programs serve an important dual purpose in that they foster engagement and self-discovery for dementia sufferers and their caregivers, while at the same time providing an enjoyable activity that can be done together.  I remember trying to think of activities I could do with Dad that we would both enjoy and that would get us out of the house.  It was hard for me not to feel bored and isolated and I imagine he felt that way, too.  We did have several things that we did and enjoyed, including going out to lunch and to the Museum of Flight, but I could have used a lot more.

We all long for a sense of purpose, the feeling that we matter and are heard, the sense that we are connected and a part of the world – and that our lives mean something.  I can only imagine that dementia sufferers feel this even more strongly than anyone else, and that they yearn for others to recognize that they are still part of the world.  Caregivers aren’t far behind their charges in longing for connection and meaning; caregiving can be one of the most difficult and isolating undertakings of all.  As I listen to the colorful and imaginative comments made by members of the group and watch their pleasure as they interact with and are listened to by others, I realize that this program is about more than just art and opinions.  These programs provide a sense of connection with culture and the larger world, and in eliciting the opinions and imaginations of participants, they make dementia sufferers feel heard and that what they have to say matters.  Listening to the colorful and imaginative comments made by members of the group and watching their pleasure as they interact and are listened to, I realize that today’s theme is very appropriate in that it has filled a longing - giving these people back a place in the world. 

Visit http://fryemuseum.org/here_now_programs for more information or the MOMA site at (http://www.moma.org/meetme/index.), or contact your local museum for similar programs.

End of Life Resources.

In honor of my teleconference on Thursday, I'm going to post my favorite end of life resources, including books and websites.  I hope you find it helpful.

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.


 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.  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 End of Life Handbook, David Feldman and S. Andrew Lasher.
This is both a practical and emotional guide to the end of life process.  It includes information about making healthcare choices, hospice and palliative care options, and physical manifestations of the dying process, as well as how to have difficult conversations, how to deal with grief and be gentle with oneself, and how to go on after loss.  I really recommend it as a quick read with easy-to-access information


 http://theconversationproject.org/

http://www.hospicefoundation.org/

http://www.hospicenet.org/

http://www.doyourproxy.org/resources.php

http://www.agingwithdignity.org/five-wishes.php

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1

http://www.nhpco.org/

The Therapeutic Lie.

I was on Facebook this morning and saw a link to the British newspaper, The Telegraph, posted by the UK Lewy Body Society.  The link had to do with 'therapeutic lying', in other words, either withholding the full truth or making up a false response when a dementia patient has an issue or question.  This is one of those issues that comes up and over and over, caregivers questioning themselves constantly, and may I add, needlessly.  Do what you've got to do, is my motto.

I've written a chapter about this for my new book, and this seems like a good time to preview it!  I've also posted the link to the article below.  Enjoy.

"Obviously, we aren’t advocating lying as a spiritual practice, but there’s no denying that it can really come in handy when you’re talking about your charge’s well-being.  If you continually treat them with dignity and respect, and really feel it, who cares whether you have to lie or dissemble?  Feelings and non-verbal communication have become even more important to a dementia sufferer.  You can afford to lie or agree because the dementia will erase it any way.   You can avoid most problems proactively by not bringing up problematic questions or lines of conversation.

•  In the beginning, I tried to be as honest as possible, at least as honest as he would let me, about what was happening to Dad.   Be honest, tell them as much as you know, or as much as you think they can hear.  Whether or not they choose to accept it, your loved one is entitled to the truth about their condition and possible future, presented as honestly as possible.  I try to always be bluntly truthful when I talk to family members and caregivers about the diseases, their manifestations and progressions, and what is to be expected.  At this point, there is nothing to be gained by lying about what is going to happen; it could, in fact, be harmful by raising expectations or fostering bad decisions.  I am a big proponent of honesty when appropriate, especially when the sufferer is more lucid and able to comprehend and make choices.  I would recommend including the patient in discussions about their healthcare and well-being.  I recognize that there will still be problems, sufferers will still be in denial, progress may seem slow.  Be realistic, recognize that Rome wasn’t built in a day and keep working on yourself.   

• There are tricks of distraction that come in handy.  If you are facing a difficult conversation, or the prospect of convincing your loved one to do something they might not want to do, avoid anxiety and distress by pretending the conversation has already taken place and they agreed to what you suggested.  Make sure to thank them and give positive reinforcement.  Honesty vs. helpful lies.  Say what you mean and do what you say you’re going to do.  Make sure your words, voice, and body language all say the same thing.  “Meaning is in people, not in the words by themselves.”

• There are times when not imposing the truth on someone is the most compassionate thing you can do for them.  If it still makes you uncomfortable, try to think about it as lying to the dementia, not to your loved one.  
• 
  
•  Strategies include: finding out what they might fear in terms of the police, social service authorities, or loss of access to you.  Most people in this situation are afraid of being left by their loved ones, and unfortunately, you can use that, again, for their well-being.  Please understand that I’m not advocating neglect or abuse used as threats in any way.  I’m just not above using any information you have about what will motivate your loved one to act.  Your life and your time, as always, are just as valuable. I think, as caregivers, we should be using any and every tool available to us in order to fulfill our roles.

• Dementia is like the weather, if you wait long enough, another belief system comes along that wipes out the prior painful or uncomfortable one.

• Ask yourself what is behind your resistance to lying.  If you are feeling disrespectful or as if you are betraying your loved one by lying, then it’s possible you haven’t yet accepted the realities of the disease.  Are you truly facing the fact that your loved one is now changed, that their role has changed, or are you still motivated by who they used to be to you?  You must manage your own old expectations, grief, and disappointment since your loved one’s capacity to assist you has lessened or disappeared.  The person you love is still there, but their needs have changed.  Look beyond the feelings of disrespect or betrayal and ask yourself what is in your loved one’s best interest, not your own.  Perform in a way that is best for them, which may include lying about that which would make them unhappy or uncomfortable. 

• It may seem as if not revealing or lying about your loved one’s illness to family and friends is a way to protect your loved one’s dignity or remaining sense of self.  Consider, however, that doing this prevents friends and family from offering needed help, and/or saying good-bye to someone they care about.  In this case, you must balance the needs of your loved one and those of his/her friends and family."

http://www.telegraph.co.uk/health/healthnews/10287326/Psychiatrists-and-nurses-admit-lying-to-dementia-patients.html

Great Post.

Here is a link to a great article that was posted on Alzheimer's Reading Room.  The article was originally written by Marie Marley, the author of Come Back Early Today: A Story of Love, Alzheimer's and Joy.  I recommend the article as it covers some of the most basic, and difficult, questions related to families and dementia.

http://www.alzheimersreadingroom.com/2013/09/the-5-most-difficult-decisions-youll.html#more


I hope you enjoy it as much as I did!