By Steve Moran
I started this article as a stream of consciousness a few days ago …
It is 10:30 Friday morning. I am on my fourth day of COVID, my 91-year-old stepfather is on his sixth day of COVID in the hospital.
The hospital wants him out. He wants out.
He is confused and frustrated and alone. He wants to come home.
I am not sure I can safely care for him at home.
I can’t figure it out. I want to cry …
They are planning on sending him to a nursing home today or tomorrow and that horrifies me.
He is confused but wants to come home … but it’s not what’s best for him or best for my wife and me … or maybe it is what’s best for him.
I can’t figure it out.
I need someone to tell me what to do, to show me the way.
I am an expert, so I thought, so you thought … I am so in over my head.
I am talking to an assisted living community, but I am not sure if they will take him still testing positive; I am not sure how much money it will cost.
I am overwhelmed with guilt.
It’s Been a Week Now
It has been a little over a week now, and I am a senior living consumer and family caregiver. He is in memory care, though I am not sure it is where he should be. He has serious cognitive challenges but can do all his own self-care and can carry on meaningful conversations … though he won’t remember them 30 minutes later.
His fellow travelers in memory care are much less verbal, much less conversational. I am afraid they are accelerating his decline. I am going to need to address it with the community, going to need to advocate for him.
So far, they have him in the community … a room filled, a paying resident. It seems enough for them, but it is not enough for me or for him. I need more help, more expertise, more guidance.
My guilt has never been rational. I know that if I were advising someone else in similar circumstances I would be telling them (telling me) they are doing the right thing. The guilt is subsiding but will likely always remain.
It is common to have temporary dementia with an illness/traumatic event and the more you move the person to an unfamiliar location the worse it gets. Usually, the person already has some form of dementia or forgetfulness. Sometimes it is just better to come back to a familiar location. The future is hard to forecast. It may now be permanent, or he may improve. The truth is that the older you get, the longer it takes to heal, and the more complications may arise following a hospital stay. My fight is for longer hospital/rehab stays allowance with Medicare/Advantage plans, or more home health care following a stay.
We have seen much of this. He was hospitalized a few weeks ago for something else and the level of confusion increased in the hospital and decreased over time when he came home.
This time I pushed for and got an extra 4 days in the hospital (including filing an appeal with Medicare) and that allowed me time to get past my worst covid symptoms. It should not have been that big a fight. I am also not sure that more hospital time would have made things better for him.
I am guessing he might have done better in some respects coming home, but one of the things we don’t talk about as much as we should should is the emotional and physical burden of caring for a person with dementia at home.
I just returned from a weekend away to see my new grandson and other grandkids. It would not have been possible if he were not in senior living.
Received via email.
I’m so very sorry for your stepfather and for your family struggle. As you say, you advocate for senior living but your own family rejects that as a viable alternative.
I’ve worked in senior care communities as an activity professional for over 18 years and I know for myself my choice would be never senior living.
As you’ve walked this path with your stepfather you see the problems.
I think watching and working in everything from expensive ccrcs to count nursing homes one thing is clear – it is no one’s choice to live in senior living.
When ccrcs opened in my county I was a newspaper reporter and I went to cover this new housing. Then active seniors loved the idea of easy living, no snow to shovel, great meals, fun activities etc.
Sadly over 30 years later the CCrc promise of a great life has disappeared. Residents tell me aging residents eliminated the possibility of long trips and cruises due to poor health. The onsite theater company doesn’t have residents able to take part and the onsite activities also were reduced.
Due to low census, people in wheelchairs on oxygen and serious health are admitted to independent sections when clearly that is not active senior living.
Boomers over and over say they will age at home and they are doing it!
They can have anything they need delivered to their doors overnight. No driving no problem just use Uber! Communicate – zoom. Exercise – stream. Robotic pill machines can even monitor meds!
Thus senior living has become a last place choice for those too physically ill or now mostly cognitively unable to live alone. I see every day more ccrcs adding extra memory care rooms. And sadly the activities often offered in dementia units do nothing at all to strengthen cognitive skills and slow decline! Far too many offers endless bingo – which if that cured dementia it would be cured today – instead proven to do nothing but make residents sit quietly while looking busy to grief worn children.
I’m 68 and my husband is 71. I’m tired of realtor calls to sell our house – we are not moving! It’s a ranch and we love our independence!
My mom age 96 lives at home and my aunt lived independently at home until age 99!
Senior living is now senior care and rather then continuing to try to recruit active healthy seniors maybe the focus should be improving care for seniors with serious health needs who like it or not are the new buyers.
What you and your Dad are feeling is “normal”. If he is fairly high functioning would it take a load off everyone to bring a caregiver into the home. Even a few hours a day? Most of my patients at home with mental and/or physical challenges have family members who are willing to find this solution. I am a family nurse practitioner and see my patient’s in their homes. There is a network of caregivers I have found I can reach out to who can assist temporarily or long term.