“How to Care for Aging Parents”- Highlights from Introduction

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Several years ago, local support group member Cheri recommended the book “How to Care for Aging Parents” by Virginia Morris.  It was required reading in a class she took.  Cheri described it as a “thick book (over 650 pages) with lots of information regardless of who the ill person may be — parent, sibling, or spouse.”  According to amazon.com, the book “covers all the emotional, legal, financial, medical, and logistical issues in caring for the elderly.”

Local support group member Denise is reading parts of the book and will share some highlights along the way.  Here’s her description of the introduction to this book, which addresses how caregiving has changed over the last couple of generations.

Robin

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“How to Care for Aging Parents”
Book’s authors:  Virginia Morris and Robert Butler
2004

Denise’s highlights from the book’s Introduction

In the introduction of this comprehensive, well organized manual, Ms. Morris points out that often, in taking on the job of caregiving a family member, we make a couple mistakes in our thinking.

We feel it is our filial duty.  People have been doing it forever.  So, why do I feel overwhelmed and exhausted?  Why can I not handle this as well as my mother or grandmother did?  Thinking that is the first mistake.

Things have changed a lot in the past few decades.  Years ago aged parents were never really aged.  People didn’t grow old; they grew up and they died.  Only 100 years ago, that was around age 51.  Within our children’s lifetime, the average life span is expected to extend routinely to 85.  Thousands will surpass 100.

People are living healthier lives.  Doctors have better diagnostic tools.  New treatments keep people living longer.  But the human body still wears out.  It slows down.  It becomes susceptible to a host of ailments and diseases doctors continue to treat to the bitter end.

Caring for aging parents used to mean sharing meals, helping with chores, and then, for a few weeks, seeing him through sickness and death.  As a result of medical intervention extending life, caring for an aging parent now involves catheters, oxygen, and multiple medications.  The average caregiver in America devotes 20+ hours per week for nearly five years.

The situation for women, the traditional caregivers, is most remarkable. There was a time when women were home and had kids in their twenties.  Those kids were grown and gone before parents typically became ill.  Now women are working and having children later.  They have been deemed, “the sandwich generation” by the media; caring for both children and aging parents simultaneously.  And they’ve taken those jobs all over the country, sometimes managing a parent’s caregiving from hours away, even by plane.

Whether male or female, you should not consider caring for a truly ill or aged parent singlehandedly; particularly with growing children and a full time job!  The results can be divorce, debt, job loss, depression, insomnia, illness and death.

Society and business are stepping in to fill caregiving needs.  There are more assisted living facilities, more gadgets to maintain independence, more agencies to support caregivers, more adult day care, more support groups, and more information available, especially via the internet.  But the baby boomers just turned 65 so more is needed: respite, job support, financial assistance, and better housing options, to name a few.

The second mistake caregivers often make is defining ‘elderly’ as 55+ when life expectancy is 85+.  It causes a mindset that the presence of ailments means one is useless, fragile, unproductive, and no longer able to participate in society.  In reality, the flip side of all those medical treatments, means our aging population will be productive members of society well past 55.

If caregivers prematurely age our parents by expecting them to be incapable or cautioning them not to step out, get involved, try new things, we create helplessness and further decline by encouraging a sedentary lifestyle.

The upshot is:  encourage aging parents to remain active and as involved in life as they are capable of for as long as they are able but when they need care, don’t expect to do it alone.  The first chapter discusses beginning a conversation with your parents in preparation for the day when they are unable to make decisions.  It outlines what information and documents you should have to make those decisions for them, and what questions you should ask to make decisions according to their wishes.

Caregiving tips from PSP caregiver

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Online friend Jim posted these suggestions recently about caring for his wife.
He was responding to a family dealing with a new diagnosis and wanted to
offer suggestions on how to cope with changes.  Jim’s wife has
progressive supranuclear palsy (PSP).  These tips apply to all the disorders
in our group.

Posted by Jim
February 13, 2012
Posted to PSPinformation

 

It also took years for me to get a PSP diagnosis for my wife.
Unfortunately, it’s a good-news/bad-news situation. Good that you can stop
searching out new doctors to get a correct diagnosis, but bad news in that
there is no treatment for PSP. When a neuro finally said he knew what my
wife had, he looked very sad. He said, “She has PSP; I’m sorry”. It
was only later that I figured out why the ‘I’m sorry’.

 

My wife fell several times with her walker. We finally stopped that and
went to a wheelchair to keep her safe. She couldn’t use her arms, so her
travel is restricted to me pushing her around. I also have an inexpensive
shower/toilet chair which we use in a roll-in shower as my wife is no longer
strong enough to stand in the shower while being bathed.

 

A helpful tool to be used when moving your mother around as her mobility
declines is a ‘lazy Susan’ type disk which she can stand on and be used to
pivot her onto the commode; into a chair; even into the seat of an
automobile.
I smeared “shoe Goo” on the bottom of the bottom disk, to prevent it from
sliding on smooth surfaces.,

 

Having been on this List for quite some time, I have noticed the
pattern that the disease often takes a step downward following a traumatic
event such as surgery or a bad fall.

 

My wife can no longer speak as she has been unable to open her mouth
for some months now. I try and use a white board to draw picture symbols
for HUNGER, THIRST, PAIN, TOILET, etc. She can also sometimes blink
for ‘Yes’. [While your family member can still speak} establish some ground
rules.

While the wife and I long ago agreed that we could not

have a feeding tube inserted in the stomach, we HAVE been successful in
feeding her by squirting pureed food into her mouth in short spurts between
swallows. (I use 60 ml plastic syringes available at medical supply
stores/pharmacies).

 

[Members here] recommended we buy the Magic Bullet blender to puree food.
It is a lifesaver. Last night I used the syringe to feed a pureed meal of
pork chops, mashed potatoes and gravy (thinned with beef broth). We
bought the Magic Bullet at a reasonable price at Target Stores. It comes
with several jars, lids, and two grinding devices. It will puree almost
anything.

 

My wife’s daily feeding routine is BREAKFAST: Yoghurt and thickened
coffee. LUNCH: Chocolate, strawberry, or vanilla “boost” with ice cream
added. SUPPER: Various rich soups, stews, or mixed foods such as
chicken pot pie, roast beef and potatoes, pork chops, etc.

Best of luck,
Jim

One patient’s approach to living

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An online friend, Aletta, who has multiple system atrophy (MSA), posted the following recently to an online support group. She
has lived for nearly two decades with MSA so maybe there is
something to her advice!

———————

Posted by Aletta
February 7, 2012
to the PSPinformation online support group

Personally I think much more needs to be done to help us live with the devastating symptoms, and to help slow down or even halt the progression of the disease to where we can have near normal lifespans.

So do a lot of reading and if you see something you want to try find a doctor who will let you try things and will monitor you thoroughly. If I had just sat back and taken this illness I would have been gone by now, and I really want to live to be eighty more than anything. I can’t be too unhappy with how it has gone until now, I am a few years past my expiry date, and still able to type and send you posts. I spent my weekend with my grand-kids already 8 and 6 years old, I almost did no live to see them at all. Find people who live longer than others, find out what they did and try doing that also. Never assume because a doctor read in his old textbook that you now have a lifespan of 2-8 years that this is gospel, it is not. Sadly believing something can result in the self fulfilling prophecy you might give up and dread the future, become depressed, and give up. If you have the will to fight and the desire to make every minute of what we have left count, just go on – enlist those who love you to help you out with it and decide on what you want to do and find a doctor who understands that, Ask lots of questions on groups like this one, find what works, what does not.

Look at the limitations you have and construct a different life reduce stresses, get lots of rest, learn to say no so you do not overdo it and find ways of filling that time at rest with laughter, books on tape, container gardening, art, crafts, music, whatever makes you happy and spend the time you have a with some energy being with those you love. Find some things that might help and are otherwise not dangerous (in my case cinnamon, flax seed, senna tea, video games, laughter, walnuts and blueberries) and have them often. Very importantly spell out what you need to those around you, they are not psychic.

Comparing survival time by dementia type (AD, DLB, FTD, VaD, mixed)

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These Australian researchers reviewed the literature on survival time with Alzheimer’s Disease, mixed dementia, vascular dementia, frontotemporal dementia, and dementia with Lew bodies.

After reading this abstract, I wondered if the Australian authors were native English speakers.  Lots of sentences are hard to understand!

Example:  “Relative loss of life expectancy decreases with age at diagnosis across varying gender….”

I think this means:  The older you are, the lower your relative loss of life expectancy is.  And this was truth whether you are male or female.

Here’s another weirdly worded sentence:  “We found that the impact overall of dying from dementia decreases with increasing age…”

For me, the two key takeaways were:
* there aren’t enough studies in dementia with Lewy bodies to have a good idea as to survival time
* survival time “cannot be predicted accurately”

I think that’s enough about this paper for all of us.  The abstract is copied below.

Robin

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International Psychogeriatrics. 2012 Feb 13:1-12. [Epub ahead of print]

Dementia time to death: a systematic literature review on survival time and years of life lost in people with dementia.

Brodaty H, Seeher K, Gibson L.
Dementia Collaborative Research Centre, University of New South Wales, Sydney, NSW, Australia.

ABSTRACT
Background: Life expectancy with dementia directly influences rates of prevalence and service needs and is a common question posed by families and patients. As well as years of survival, it is useful to consider years of life lost after a diagnosis of dementia.

Methods: We systematically reviewed the literature on mortality and survival with dementia which were compared to estimated life expectancies in the general population. Both were then compared by age (under 65 years vs. 65+ years), gender, dementia type, severity, and two epochs (prior to and after introduction of cholinesterase inhibitors in 1997).

Results: Survival after a diagnosis of dementia varies considerably and depends on numerous factors and their complex interaction. Relative loss of life expectancy decreases with age at diagnosis across varying gender, dementia subtypes (except for frontotemporal dementia and dementia with Lewy bodies), and severity stages. Numerous study deficiencies precluded a meta-analysis of survival in dementia.

Conclusion: Estimates of years of life lost through dementia may be helpful for patients and their families. Recommendations for future research methods are proposed.

PubMed ID#:  2232533  (see pubmed.gov for this abstract only)

Grief has to do with failure to accept change

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This is a lovely New York Times (nytimes.com) article by a gentleman whose grandmother JoAnn was diagnosed with Alzheimer’s seven years ago.  I think the message applies to our approach in coping with any family member’s diagnosis — not just a diagnosis of dementia.

Here’s a key excerpt:

“But what I learned from my grandmother’s journey through Alzheimer’s was that my grief regarding her condition had largely to do with my failure to accept the change she was undergoing.  Regardless of how I felt about it, JoAnn’s change was the truth. What was gone in her was not missing. And the more fully I understood that, the more present I was able to be during her final years.”

Tying in one tidbit from a webinar I was on earlier today, it sounds as if the gentleman was stuck in the “denial” phase of grief and had to get to the “acceptance” stage before he could adjust his thinking “to be present” with his grandmother.

Here’s a link to the full article:

well.blogs.nytimes.com/2012/02/16/finding-joy-in-alzheimers/

Well Blog
Finding Joy in Alzheimer’s
By Robert Leleux
New York Times
February 16, 2012, 12:01 am

The author of the article, Robert Leleux, is the author of the book “The Living End: A Memoir of Forgetting and Forgiving.”

Happy reading!