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.