Washington
DC
I mentioned in a previous
post an incident in which Marja uncharacteristically didn’t get home until
after midnight and I didn’t know where she was.
Terror moved into a place just under the surface of my emotions. I realized then that a crucial reason I’ve been
able to live without much fear of the future is my assumption that Marja will
be there to accompany me through this illness.
What if Marja isn’t here? I have an extraordinarily supportive faith
community. We frequently devalue the
importance of close community. I hope
I’m not being a Pollyanna here, but I have some confidence that if Marja is not
here to care for me, then my community will surround me.
My children would certainly be available and would do
their best, but I obviously don’t have the same relationship with them as with Marja.
I’m sure I could live with them for quite a while, but I could not (and would
not) expect them to keep me as far into my illness as Marja. And since my children live far away, I’d have
to leave the community here.
There’s no particular reason to expect Marja to be
unavailable, and I really don’t think about it much, but sometimes the
possibility scares me.
I read an article
in the Washington Post on Monday about
an AARP report predicting a severe shortage in the number people unable or
unwilling to provide unpaid care. The
number of potential caregivers (defined by AARP as those aged 45-64, ie our
children) available in the next few decades for the elderly, demented, and
otherwise fragile people of the baby-boomer generation will be falling. The shortage will be due to:
- the increasing numbers of baby boomers,
- the increasing longevity of Americans, and
- the decreasing number of those younger caregivers available because baby boomers have had fewer children than their parents.
What was astonishing to me was the estimated cost of
the unpaid care currently provided by caregivers. In 2009, it was the equivalent of $450
billion, more than the cost of Medicaid and approaching the total cost of
Medicare! The national political terror
of budget deficits and increasing taxes (a different topic about which I have
strong feelings but won’t get into here) makes it unlikely that the huge
government financing necessary to fund the increase in paid caregiving will
make it through the political process.
Perhaps the greatest fear of Alzheimer's is
abandonment. I have my children, so I’ll
be okay through most of the journey. But
what about those who don’t have unpaid care available? Where will the money come from to care for
them either at home or in an institution?
Will there be even more substance to our fear?
In addition to the $450 billion cost in unpaid care, there is the added total aggregate loss by caregivers of an estimated three trillion dollars in wages, pension, and Social Security benefits. (Source:
ReplyDeleteThe MetLife Study of Caregiving Costs to Working Caregivers, based on data from the 2008 panel of the National Health and Retirement Study)
Couple that with cuts in home care services, such as reported by John Leland in the New York Times ("Cuts in Home Care Put Elderly and Disabled at Risk," July 20 (online) and 21 (print), 2010).
Close community (whether in-person or online) seems more important than ever these days. I can't overstate the difference it has made for me.
David,
ReplyDeleteI just read an article in the Senior Housing publication on line I get and it was terrifying. As a professional who hires care givers for those who can pay at this point in time we have to worry about finding care givers period. Our children have to work in order to eat and can't really care for us in our time of need and there is a national shortage of paid professionals because of the average life cycle. We need help in so many ways, we should be fearful I'm sad to report.
Realizing that there will be a shortage of people willing to take even paid positions is another important step in underlining the potential crisis and begin advocating for change.
DeleteSingle with no children or siblings, a retired US Diplomat with friends and contacts around the world, returned to USA to retire, can't create or become part of that degree of caring community that easily, their lives are full and I wasn't here earlier to pay my caring dues.
ReplyDeleteCaregiving is in the back, or front, of my mind almost constantly. Money, who to trust, quality of care, money, and assisted living places, almost all, make you give up a pet, in my case an old rescued in Madagascar cat, a person has had for more than 15 years. That's caring?
At a societal level, we are not generally kind to the elderly, demented and disabled. The expectation seems to be that people should "take care of themselves" and not be "dependent on others," forgetting all the ways each of us is dependent on others.
DeleteI wish there were something else to say. I hope you never need long-term care and that, if you do, you will find one of the excellent long-term care facilities that do exist.
My Greatest fear is being Homeless and having Dementia. I saw this in the Homeless Shelter I stayed in after an operation, and no place to live. It made my heart ache for those who were lost, in their mind. It made me sick with our Country, that it couldn't take care of these people. I'm sure you've seen this being a doctor for the poor.
ReplyDeleteOne time, a long time ago, there were several of us nurses sitting around, depressed about some difficulty or other of a resident. The DON (Director of nursing) walked in and started trying to get us out of our funk. "Remember, only 5% of all Americans over 70 are in nursing facilities. The other 95% either die at home, or go to the hospital and die there. The majority never go to a nursing home." That is my mantra. Even working in the special care unit, the majority of them do not die of AD. They die of what all elderly people die of, heart problems, COPD, cancer, infection, respiratory infections, even bladder infections which can cause sepsis. While its not much of a comfort, I know, it is true that most people do not die of AD.
ReplyDeleteActually, that comforts me ... and I'm not speaking ironically.
DeleteThe anxiety works the other way, too. I'm the sole caregiver for my husband who has early onset Alzheimer's, we have no children, and we live far from siblings. What happens to him if I die in a car accident, or become seriously ill? Last year, we jumped through the legal hoops to create a living trust, so that professionals are already lined up to step in to manage the financial end of things, and we asked a long-time friend to help with the personal side, which would probably mean transitioning to a care facility. It was a huge burden off my shoulders to have that in place, just in case. Hard to think about, but a necessary step in planning for an unknown future.
ReplyDeleteYou make an important point. For the peace of mind of both the person with Alzheimer's and the caregiver, contingency plans must be in place. If there is a willing spouse, willing children, etc, then those plans can, under the best of circumstances, be informal. But when, as in your case, there is no backup, the legal/financial planning needs to be done well ahead of time. Thanks for writing.
DeletePat,
DeleteThis is very helpful information about the Living trust. We had no children, so no one to help really. My husband, age 59, has "early dementia"..and I've been wondering about the care and legal issues. Still wondering, but thanks for your input.
I'd strongly recommend seeing an "elder lawyer" as early as possible. Also, if you put the word "Medicaid" into my search engine (at top on the left), you'll find some information that might be helpful.
DeleteThis hits me where I live. I am the caretaker to my 67 year old husband who has heart failure, diabetes, unhealable wounds in his feet, kidney failure and lung problems. I detect early Alzheimer's signs in both of us.
ReplyDeleteLast sunday I woke up with severe chest pains and drove myself to the emergency room. After several days of testing they decided it was my gall bladder and removed it yesterday and I am now home, trying to cope. Our children both live out of town, but have been supportive. Obviously this is a temporary ailment, but it gives me pause to think of what is to come....
Wow, I try hard to not worry about the future but this takes planning. We have a good retirement income beginning in Jan 2014. We have insurance for long term care, too but I know how quickly that will run out. Pat, thank you for your input about the living trust. Who did you contact first about this....your financial advisor or your attorney?
ReplyDeleteWe have a son who will look after us without question so we are lucky. But he has already has a heart attack, so he might die before we do. Jerryboy has early dementia and Gerrygirl has spinal stenosis so I am limited with housework and driving to doctors. I now use a walker (frame)....I had to swallow pride for this, because I was the Energizer Bunny before my illness. I was a performing pianist and organist for 65 years, in good health.
I had no idea that I would be so dependant on others at such an early age. I am always cheerful so I know that is a good thing in taking care of my husband. I have been encouraged by others who have already taken this journey.
Gerry (Gerrygirl)
We already had standard wills, so we worked with our lawyer to set up the trust. The trust essentially replaces your will, as well as putting ownership of all assets in the name of the trust. For now, I'm the sole trustee, so nothing really changed in our day-to-day money management. If I die or am disabled, at that point a trust company takes becomes the trustee, and takes over all financial management. The trust company has been designated, but doesn't actually do anything until then.
DeleteSorry .. "trust company becomes the trustee...."
DeleteI'm only 61 years old. My father died about seven years ago and I inherited a little bit. Not enough to retire to the South of France, but a nest egg that is paying my COBRA health insurance, while I'm waiting for medicare to kick in. I made out a will and both a durable power of attorney and a medical power of attorney, and gave copies to the hospital, my daughter and I have a copy. If I'm indisposed, surgery wise, illnesswise, whatever, my Daughter can walk into my bank and sign my checks for whatever I need. If I'm comatose, she knows my wishes. She knows I do not want a feeding tube or a ventilator. Essentially if I am comatose, confused, etc. she can take over all finances and medical care. Of course, she lives here in my town (even tho I never see her, because she works 40 hours a week and is an ambulance driver and EMT). But I find it very comforting to have this arranged and copies given to the doc and hospital.
ReplyDelete