I pluck topics for Nutrition Tuesday from news headlines and
conversations with friends and family. This week I’m pulling my topic straight
from the noise scrolling through the headlines in my mind.
- Mother with Alzheimer’s disease recognizes daughter but daughter no longer recognizes her mother
- Woman’s body outlives brain and finances
- After spending 2 years “near the top” of a resident care waiting list for financially pre-qualified individuals, she is offered a room and then promptly disqualified due to lack of funds
- Alzheimer’s disease sucks
For those of you who know me or who have read my other posts
about Alzheimer’s disease (Alzheimer's Disease and Vitamin D,
Alzheimer's Disease and the MIND Diet), you know that I have a family history on both sides of my tree and that my
mom currently has the disease. Right
now, I’m in Kansas City for a short visit. I came in town to spend a little
time with my family and to help my sister – her primary care provider and
coordinator - decide how our mom’s care progresses to the next step. It is hard
and all-consuming. I don’t know how my sister does it - how she balances her own
family, cares for our mom, and works. She is amazing and I am thankful and
grateful for all she does. I’m not sure I could do it.
This week, all I can think about is Alzheimer’s disease. I
have not done any nutrition research or read any articles. This week I’m not
writing from the point of view of a professional. I’m writing as a daughter of
a woman with Alzheimer’s disease.
 |
| My parents - June 2005. Las Vegas, Nevada |
Stuff that makes me sad and frustrated
Health care in the United States. In this country, there is outstanding healthcare, if you can afford it. Our system is privatized and expensive. I don’t think we have anything in place to deal with the growing number of people with Alzheimer’s disease and living longer lives with Alzheimer’s disease. Appropriate levels of healthcare for those with Alzheimer’s disease are available to those who have money. Lots and lots and lots of money. If you have good insurance and your net worth is enough, you can get home health or into a resident care facility and have decent care. If you have access to a lot of money, you can afford properly licensed, insured, and bonded home health care. The gap between those that have lots of money and everyone else continues to grow. Most of us cannot afford proper care for long, if at all. What are we supposed to do? As I write this, I know that my family is luckier than countless others and our resources are woefully limited for the type of long term care my mom likely needs. |
| My mom - spring or summer of 2014 Kansas City |
Waiting lists. My mom is on an interminable waiting list for our top choice of care
facilities. She’s “near the top” of the list. Unfortunately for us, there are 2
other lists that have priority before they get to her list. In other words, if
anyone on the 1st list wants a room, they automatically get the
first room available. Then, they work their way down the next list – a list of
people who previously were on the list we are on but were not ready to take a
room. So, they said call me back later and see if I’m ready for assisted living
then. These are the people that knew in advance about the length of these
waiting lists. They planned farther ahead. These people get second priority.
Then, if the room is still available, the list my mom is on gets called.
Privatization
of healthcare / health insurance. We have our top choice facility because
they are unique – not only is the quality of care very good but if/when my
mom’s resources and insurance run out she will not be asked to leave because
she is on Medicaid. Not all facilities, especially facilities with reputations
like this one, will keep people after insurance and personal resources run out.
Lack of
right-to-die rights. I believe in death with dignity and the right to die.
I think every state in the U.S. should allow people to create living wills
stating what quality of life is tolerable and intolerable for them when dealing
with a terminal illness. Alzheimer’s disease is a terminal illness. One
person’s personal end point may be when she cannot wake up in the morning and
state her name, birthday, and address. Another’s may be when he requires
24-hour care. Another’s may be when she advances to a certain stage of the
disease. Everyone is different and should have the right to choose or not to choose.
According to an April 2015 article in USA Today, 5 states – Oregon, Washington,
Montana, New Mexico, and Vermont – have enacted right-to-die legislation. USA Today, April, 2015: Death with dignity
Alzheimer’s
disease. It sucks.
 |
| My mom just after a nap - August 2015 Kansas City |
It’s a balancing act
My sister and I are faced with a balancing act because our mom’s
directive is to stay in her home for as long as possible. She set things up in
advance and so we know what she wants. Now, as her daughters and caregivers
(the main role falling entirely on my sister), we have to execute the plan and
balance her directives with reality. We must figure out how to honor that while
keeping her safe and financially viable so we can ultimately get her into a
facility while she can afford it. It’s tricky because she might very well live
a very long time with this disease - as
far as we know, our mom is otherwise very healthy and is not that old. Still, she
has always been vocal about never wanting go to a resident care facility. It is
sad and scary to witness her personality change and her times of vacantness. I
have no idea what it is like for her to experience it. We are concerned that
being in a resident care facility will be the death of her. As we balance
safety, financial reality, nature of the disease, and who she is and what she
wants for herself, I have to wonder if she would care if such a move were the
death of her considering what life is like now.
Final thoughts
It is important to create care directives and I am so
thankful that my mom did. As my mom’s needs change, we add new layers of care
for her. We continue to wait to see if she makes the cut for our top choice of
care facilities and we add to her home companion care team. My mom cannot
afford $36 to $45/hour home health care, so we (by we, I mean my sister)
luckily connected with some trustworthy and caring companion care providers. My
mom doesn’t need nursing care at this time, so companion care is the
appropriate care level for her. I cannot imagine how scary, confusing, and
frustrating it must be for my mom as new people come into and out of her home
as they do, but she takes it in stride. The loss of freedom, control, and power
is hard for her, but she doesn’t complain about it. For the most part, she’s
responded well to the care team.
Some articles about
advanced care directives and right-to die issues
- Deathwithdignity.org, April 16, 2013: Alzheimer's disease and dementia mental health advance directive
- health.ny.gov: Advanced Care Planning
- PBS.org - Frontline: Suicide plan - the evolution of Americas right-to-die movement
- University of Minnesota: Life-ending decisions for Alzheimer's patients
