Alzheimer

Personal Blog # 16 … COVID-19 Decisions for Caregivers With Loved Ones in Assisted Living Facilities and Nursing Homes … 5/16/20

As stressful as this “new normal” has been for me as a former
Alzheimer’s disease (AD) spouse caregiver who recently moved on with his life,
I can only imagine how much more stressful it is for those who are
caregivers now … especially for those whose loved ones are in in long-term care
facilities.  Most Assisted Living
Facilities (ALFs) and Nursing Homes (NHs) now prohibit visitors due to this
pandemic.  That restriction alone would
have caused me enormous additional stress, anger, and sadness. 
Should caregivers leave their loved ones in ALFs or NHs, or
bring them home?  My wife’s worsening
medical conditions eventually necessitated a transfer from her ALF to a NH, and
many caregivers are probably considering a similar transfer for their loved
ones this year.  I cannot say for sure what
I would have done had COVID-19 been around when I made my decision, but sharing
factors that would have influenced my decisions may be helpful for caregivers
facing these questions today.
Should you leave your loved ones in ALFs … or should
you bring them home?
 
It was a
difficult decision to place my wife in an ALF. 
When we retired, we both made the decision that if either of us would be
unable to care properly for the other, we would place that person in an ALF or
NH instead of hiring home health aides. 
We then took out long-term health care insurance policies to help us do
that in such an eventuality.  So, unlike
most caregivers considering ALF or NH placements for their loved ones, money
was not a factor for me.  As my wife’s AD
worsened to where I felt she would receive better care in an ALF, I made the
decision to place her and did not look back. 
My wife entered her ALF in 2013.  If COVID-19 had been around and I was
prohibited from visiting, and if there were rising death rates in my wife’s
facility, I think I would have brought her home. Although neither of us wanted this, and even
though my long-term health care policy would not have covered those costs, I
think I would have brought her home and hired personal live-in help.  Why? 
As stressful as it would have been to have home health aides
living in my house for so many hours each day, the aides would have enabled me
to still have some respite time for myself while also having responsibility for
supervising my wife’s Activities of Daily Living (ADLs).  I would have let the aide supervise her daily
hygiene, dressing, eating, medications, etc. … but I would have been able to
hold her tightly, kiss her, talk to her, and tell her I loved her just as I did
when visiting her in the ALF. 

I think I would have wanted to maintain that emotional and physical
connection with my wife for as long as possible.  I am not saying that would be the best
decision for all caregivers, but I think that would have been the best decision
for me.  My wife was no longer actively participating
in or enjoying activities at her ALF, and I cannot imagine her suffering more
as a result of a decision to take her home. 
Taking her home would have added to my stress, for sure, but I think that
I would have been even more stressed if I had been unable to visit her and
worried about her dying of COVID-19. 

So,
were my wife in an ALF now, I am pretty sure that I would have brought her
home.

However, whereas that decision would have been best for me
and my loved one
, other caregivers must make their own decisions as to what
is best for themselves and their loved ones.  Resources to pay for either ALF placements or
home health aides are certainly important factors to consider, as well as the age
and medical condition of your loved one. The caregiver’s quality of life issues
must also be considered. 

The most important influential factor may be the
relationship you currently have, and once had, with your loved one.  My loved one was my wife of nearly 50 years
whom I loved beyond words.  Would I have
made the same decisions were that loved one my brother or sister, father or
mother, in-law, or close friend who had given me power of attorney to make
those decisions?  I cannot answer that
question.  I just don’t know. I do know
that it was extremely important for me to maintain my emotional and physical
bonds with my wife for as long as possible.

What if I knew that visiting restrictions would soon be
lifted because the worst of this virus had passed?  Would I have then decided to leave my wife in
her ALF, hoping that she would remain well while knowing that I could start
visiting again and in just a few more days or weeks?  Even given that scenario, I think that I still
would have brought her home. 

Is it best to transfer loved ones from an ALF to a NH now … or should
you bring them home?
 
When my
wife was no longer able to participate in ALF activities, when I was paying for
more and more hours for personal 1:1 aides, and when she was experiencing more
medical issues, I decided to transfer Clare from her ALF to a NH.  An interim period of hospitalization
facilitated the transfer and she was discharged from the hospital directly into
a NH.  But given the data we now see about
deaths in NHs around the country, and especially in NY, I would not have
transferred my wife to a NH … nor would I have had her transferred back to her
ALF.  I would have brought her home.
Given my strong need to see her, hug her, and kiss her … and
talk to her even though I could no longer talk with her … I would
have brought my wife home when discharged from the hospital.  I would have paid for home visits by nurses
and therapists, taken her to doctors when necessary, and paid for  personal aides at home rather than be unable
to visit her in a NH … and worry about her dying due to COVID-19.  But, as noted earlier, this is a decision I
made for a loved one who was my wife. 
Were my loved one someone other than my wife, I cannot say what decision
I would have made because, if for no other reason, my emotional and physical
bonds with my wife were infinitely stronger than with anyone else in my life.

So … what is my advice to caregivers facing these extremely
difficult, stressful and painful decisions, made even more difficult,
stressful, and painful due to this pandemic? 
I can only speak for myself, and at this time I personally would not
want my wife to be in an ALF or NH with a high death rate, with or without
visitor restrictions.  That may not be
the “right” decision for you … but that would have probably been the right
decision for me.

ALF and NH placements are already difficult decisions, now
made even more difficult during this pandemic. 
All caregivers must come to these highly personal decisions by
themselves, and what is “right” for one caregiver may be “wrong” for another
caregiver.  Unless someone else is in your
shoes … and no one else is … no matter how critical others may be if your
decision is not to their liking, no one else can fully appreciate whatever factors
weigh most heavily in any decision you reach.

Knowing that there is no one “right” decision for all
caregivers, my advice is simply this:  Do
what you think is best for you and your loved one
.  Whatever you decide to do … or not do … is
the “right” decision.


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