My Expectations Met Reality
The Memory Care Experience
Dan was an easygoing guy - helpful, supportive, and kind. Dementia turned him into someone I didn’t recognize - a cranky, verbally abusive, rebellious “old man.” While I understood his confusion, depression, and anger, it made decisions regarding care facilities even more challenging.
I first tried in-home respite care, but Dan wouldn’t allow a “stranger” into his house. I gave up that idea after several tries. He would not have considered an adult-care program either, “there is nothing wrong with me.”
Reluctantly, I took on the caretaking role with the support of our adult children and their families. The plan worked for a while - until the pandemic arrived. It was soon apparent that we had to rethink our approach.
We visited several facilities. I wanted a place where Dan would be safe, and we could continue being a part of his life - see and talk to him regularly and know how he was doing. I wanted him to know we were still a family.
I’ve mentioned bits and pieces of this story more than once, but there were pitfalls in my plan and flaws in my expectations that I want to share. Maybe you can avoid some of them if or when you face a similar situation.
Our daughter went with us for the first retirement home visit. Dan was argumentative and rude. So, we visited other facilities without him.
When it was apparent that I could no longer trust or keep him safe, we chose a place managed by a retired nurse with experience working with dementia patients. It was a small home; we could visit regularly. The owner was kind and professional. A friend whose father lived there highly recommended the site. It seemed like a good fit! I couldn’t have been more wrong. They couldn’t handle Dan’s behavior - he was there less than 24 hours.
Then, we decided to stay with my daughter and her husband. I would go home daily to get a break and take care of business, but mostly, I stayed at their house - an arrangement that lasted for three weeks. Dan was verbally abusive and argumentative, tried to run away, and attempted to enter the neighbors’ homes. The three of us couldn’t contain him.
We had to find a safe place for him, and I did find one nearby. However, because of the pandemic, we couldn’t visit or meet the staff first. We had to go with it - his behavior was worsening, and there were few options.
Dan was no longer sharp enough to understand what was occurring. Had he realized - he would have resisted and refused. The doctor and facility staff conducted online assessments. He thought he was talking to friends.
We took him to the facility under the guise of moving to a new apartment, and their staff took over. He was in a locked facility with professional care. I was relieved and heartbroken.
In some regards, they cared for Dan well - he was fed, safe, and contained even though he was a challenging resident. One staff member had a good relationship with him, and he made friends. But I saw his decline each time I visited.
The facility did not meet my needs, however. I specifically asked for two things. One was to remain involved in Dan’s life - to talk to him daily and know how he was doing. The other was to keep him safe. It was essential for me - as I started life without him.
The staff guaranteed they could and would meet those requests, but they did not.
Maybe my expectations were too high - and it was a challenging time. The staff was too busy to establish daily conversations and did not inform me of Dan’s condition.
The most traumatic incident - they sent him to the hospital by ambulance alone, and no one informed me. I found out when the hospital called me and asked how he got there. He died of COVID contacted while at the facility.
This particular facility is a good one - an expensive one. It was the whole situation - promises not kept, following their rules, having to accept what they offered. Maybe that is all they can honestly do - but it wasn’t what I hoped for or what they promised.
Many residents enjoy assisted living; maybe Dan did for a short time - he had forgotten everything else.
But as a caregiver putting the love of my life in a facility, I needed - wanted more.
So, if you find yourself in that position, do your homework, ask many questions, and advocate for YOU and your loved one. Persistence is key.
If you want to contribute to my work, consider donating to the Alzheimers Association. This link takes you to their website. The choice is yours.
This is such a heartbreaking and frustrating situation.
I've read that the worst kind of stress is when we feel we don't have control over the situation, which is what you were feeling. There are so many things that come to mind Janice, but when I go to write them they all sound trite and placating and not what I mean. Time and again, when I read your articles, I think about how it seems you did the very best you could in a super stressful, bad situation. It would have been a massive challenge any time but many times worse with Covid.
Thank you for sharing your story to elevate our attention to what is important. I am dealing with this exact thing with my Mom right now and your information has given me the courage to ask deeper questions. I want you to know it's making a difference.
Janice, your story is heartbreaking and mirrors our experience of having my father enter a nursing after rehab staff decided that he could no longer make any progress. He was mostly well-cared for and the home’s staff said they enjoyed spending time with him.
And then there was hospice care, provided by the hospital system that managed the nursing home. Dad was in hospice less than a month before he died. Hospice said they’d visit every day, especially as he got closer to death. I was expecting hospice to provide more support for the family than they did. They never let us know when they were going to visit my father. The weekend before my father died, the hospice nurse took a long weekend and no one took over for her.
My father died in the wee hours of the morning on August 9. To date, we have not heard anything from the hospice organization.
I probably should have called more and reached out to the social worker and chaplain more, but I didn’t know how to talk to them. It was awkward the one time I met them in person and it would be even more awkward on the phone, which apparently how they preferred to communicate. “If you need anything, just call the hospice number and we’ll get back to you.”
I was expecting a more personal and closer relationship.
Thanks for sharing your experiences.