The Human Spirit

Here is a story of the human spirit. A 96 year old WWII veteran has been living in an assisted living facility in New Jersey for over 4 years. One by one the old time friends have passed on and the nearest child lives over 3 hours away. The new friends she has made over the years provide needed companionship, and one or more family members would visit about every two weeks. Then Covid-19 hit.

No visitors for over three months from March until June. Quarantined in her own room in June for over two weeks. Initially meals were brought to her room, but now she has staggered dining in the dining room, so there is some socialization. And the final straw that comes close to breaking the veteran’s spirit is that for the first time since after WWII she cannot have her hair cut and colored each month. It looks terrible, and feels worse and from contact with clients and their families it has been made clear that after lack of contact with loved ones, not getting their hair done is a further blow to their dignity, self-esteem, and willingness to carry on. Prisoners in solitary confinement at least get their hair cut.

Since March of this year, her emotional and physical well being has steadily deteriorated. She cannot walk as well, her energy is visibly less. She stares ahead with significantly less emotion during the strictly controlled visits by her children. She does remember and asks about an eight month old grandchild she has only seen in pictures or on a zoom call. Her facial demeanor is flat.

The one sign that she has not given up is a comment that “We’ve never seen anything like this, and I hope it is over soon.”

Talking with lawyers around the country it is a universal observation that some better way must be found to protect elders in long term care institutions, not just from a pandemic, but from the emotionally and spirit crushing policies of weeks on end isolation from family and other human beings. There is no simple solution, as physical well being is also a goal. As one slogan says, isolation kills too.

One experiment as an alternative to hospital type delivery of long term care in high density buildings is in the Netherlands. It is called De Hogeweyk (don’t ask me how to pronounce it). Instead of one big building with numerous rooms on each side of a corridor that looks like and feels like a medical institution, it connects a cluster of buildings resembling a multi-family home, but smaller. Its campus includes a town square, supermarket, pub, theater and restaurant. There are 23 separate houses. It is intended to let people with dementia live safely, but with dignity. One staff member can service about three of these units. Residents are free to roam and go and visit others and travel about the campus, walking or in a wheelchair. Residents in De Hogeweyk did not incur COVID at any higher rate than the general population. Residents self esteem and dignity did not suffer significant decline. Changing our approach to long term care will not be easy, but alternatives must be explored for the sake of our families and our society. That WWII veteran is my mother in law and for her sake and all the other women in similar circumstances, having her hair done is only a start.