After the Assessment

  
Before I left for vacation in China, I received J’s long-term care assessment. I consciously put it on the shelf until my return. Now I’m back and have to face it. 

The purpose of the assessment was “to assist the family in identifying level of care and possible long term care needs” for my wife with Alzheimer’s disease.  A social worker on staff with my elder care lawyer conducted the assessment and wrote a report. 

J was given a Mini Mental Exam, as she has been many times. She scored 10 out of 25, which at best means moderate impairment and in some analyses is borderline severe. 

The assessment concluded that J’s “level of care is that of an assisted living/personal care level.”  It further stated, “An early transition to personal care/assisted living could possibly benefit both spouses as [J] would benefit from:

  • Familiarization with a new living environment before any further decline;
  • Staff is available 24 hours a day, seven days a week;
  • [J] could remain as independent as possible – so that when [A] is not working they are sharing time together as a couple as opposed to someone who needs to make meals or clean the house;
  • Social activities are encouraged which assists in positive mental health; and
  • Elder care services are easy to access.”

The assessment noted that I may suffer from burnout, including an inability to accept that J may require services “in a setting outside the home on a permanent basis.”

Finally, the assessment expressed concern that because we don’t now have 24-hour coverage, J “might get lost, may not be able to remember where she lives and also she could meet people who could take advantage of her confused state.”  Indeed, two of her caregivers lost J for some period of time while I was away last month.

Nothing about the assessment suggested that keeping J home is a good idea. So why do I feel so bad about the prospect of moving her to assisted living (often now known as “personal care”)?

On some level, it feels like failure. All the messages from society are that devoted spouses don’t put their loved ones in facilities. I also get that message from some family members and friends, who can’t fathom that J certainly would be safer and likely would be more engaged and less anxious in a setting where she was with more people like herself. 

Over the weekend, J and I visited the facility that likely is the best fit.  It is less than a mile from our house, has nice architectural features and plenty of places to sit outside. It has lots of activities, a well stocked library, a diverse population and decent food.  It also has a memory care unit and skilled nursing, so J would not have to move again as she declines further, which she sadly will. 

The visit was better than the first time I raised the possibility of J moving to assisted living. Then she sobbed and said, “I don’t want to go.”  This time, she said, “I don’t want to leave home, but if you think it’s best, I’ll try it.”

J is scheduled for a try out next month while I am at a retreat with my synagogue. A respite stay has to be at least two weeks, so I plan to move her in before I leave town, so I can visit and see that she’s settling in. A large part of me hopes she adjusts enough that she will consent to stay. I try not to feel bad about that. 

I have looked high and low and there is very little written on the transition from home to assisted living for the spouse of a person with early onset of Alzheimer’s disease. I think part of that is that many people wait until there is a medical crisis before moving a loved one to personal care. Then they have no other option.

I am making a choice based on the best professional advice, my vast reading, discussions with others who have had family members with Alzheimer’s and my gut. I can only pray I am making the right decision, and that the people in my life will understand and support me.  To paraphrase Bette Davis on aging, “Alzheimer’s disease is not for sissies.”

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