The Nursing Home Decision
Moving your loved one with Alzheimer's to a nursing home is one of the hardest, most painful decisions you will ever have to make. Some of us can do it. Some of us can't.
Both decisions are okay. Neither is easy.
A difficult decision to make
I wrote an article recently about our great experience moving Dad into his new home. It's only now, in light of watching my friend go through this with her mom, that I can revisit and acknowledge my feelings about having to do this.
I knew it was best for Dad. I knew it was horrible for Mom. I knew it would be good for me not to have to worry as much about either Mom or Dad.
But it was a hard decision to make, especially for Mom. Very hard. I stayed positive because you have to, for your loved ones and your own mental health. The reality, though... There was the 'not so great' side of having to move Dad.
The vision language creates
In today’s world, language is everything. There are new, gentler words being used in many conversations. Words have been deemed unacceptable and replaced by acceptable and appropriate words. 'Nursing home' is one of them.
Growing up, I had only heard about how awful nursing homes were. It conjured up visions of the worst psychiatric units you see in the movies where only the most affected lived. Since Alzheimer's affects the brain and how it functions, it would be easy to equate Alzheimer's with that degree of mental illness. But it isn't a mental illness. It is a brain disease, one that destroys the brain.
Thankfully, 'nursing home' has been replaced with 'memory care' home. Not only are those words gentler and more accurate, it feels more loving. If we have to turn the care of our loved one over to someone or somewhere else, I want it to be a loving place. A place that feels good that feels right. Not a place that scares the daylights out of us and makes us lose sleep questions our decision, or breaks our heart.
Thinking about finances
I hoped my parents had enough money to afford a nice place for Dad. And I hoped there would be enough money left so Mom can live well. I would listen to family members talk about how Dad may not live long, given his current stage of Alzheimer's, so there would still be enough money left for Mom to live well. Those discussions made me feel sick. I was not strong enough to think of things in terms of Dad not living long.
Then there was the other side of the conversation. If Dad lives for a long time, the savings would impact Mom in a negative way. Again, I felt sick. What do you think about those terms? It felt like we were trading one parent for another. The cost out of pocket of living in assisted living is massive, and that is with the government subsidy that is allotted to all. A nice home is not cheap.
I was glad that Mom was open with my brothers and me about what money she and Dad had saved. But to be honest, I hated those discussions. I couldn't cope with it, so I would just have to listen, give no input and leave it to my brothers to deal with. If Mom wanted to talk to me about their finances, I had to refer her gently back to my brothers. I am thankful finances were not an issue.
When we decided it was time to ask for help
Because Mom was so torn about how best to care for Dad, she refused to do the necessary paperwork that would have facilitated a smooth transition for Dad to his forever home. I do not blame Mom. I can't even imagine how heavy that burden must have been. After several trips to the emergency room after multiple falls and the Alzheimer's disease moving forward, Mom finally uttered the words, "I can't take him home. I can't look after him anymore."
The Emergency Department is not equipped to look after an Alzheimer's patient except for the issue that brought him in. Hospitals no longer admit folks like my dad to chronic care wards. Many of those have been shut down when it became apparent it was less expensive in the system to look after the person in the community than in the hospital. It put the burden on the community care dollars, which is a different pot of money, and back on the family. With advanced planning, the person would be looked after, and the system would work. With advanced planning being the key. Not everyone has the ability to plan for this. It's almost heartless to make it so paperwork driven.
The first retirement home
Because Emerg couldn't keep Dad, he was moved to an unsecured retirement home which was the first bed available at the time. Retirement homes, by regulation and law, cannot lock the front doors. In other words, if the person wants to walk out, they can. They are there by choice, not by restriction.
Not a safe place for my wandering Dad to be. I almost lost my mind with worry about Dad wandering off. My son was living at the university about 2 blocks away from that retirement home. He set up a plan with the 6 guys he lived with that if Grandpa wandered off, they would spread out and look for him, find him. That retirement home was also located 2 blocks away from the Detroit River. I felt sick every day worrying about what 'could' happen if Dad wandered off.
Moving to a memory care home
Within a couple of weeks, Dad was moved to a safer location, a memory care home that had temporary beds available for such immediate circumstances. This meant Dad would be moved again when a bed became available at one of the three choices of homes Mom was forced to, and finally, decide on. Sometimes the temporary location needs the bed back before your choice is available. This meant your loved one could be placed anywhere in the region, not necessarily in the city where you lived.
Imagine the fear Mom had now. Thankfully that didn't happen, and it was only another week before Dad was in his forever home, in the city where he and Mom lived and in her first choice. Imagine how 3 moves, 4, if you count the hospital, in a very short period of time, would have affected my dad when he was so confused in the first place.
A journey many families must take
In the end, Dad moved to a loving, caring memory care home where he could be well looked after and safe. He settled very well in his forever home in a short period of time. It was a journey I know many families will have to live through, but it is not easy.
Are you and your loved one currently considered assisted living? Reach out to the community and share what considerations are landing at the top of your list.
Which, if any, of the following most often trigger agitation in your loved one living with Alzheimer's disease?