When I met my partner, I knew he had mild cognitive impairment. His situation got much worse, much faster
By Barbara Pierce
“This will be a roller coaster. It will keep happening,” the hospital psychiatrist said to me as he walked away from my partner, Donald. “He has dementia. You need to put him in memory care. You can’t take care of him any longer. Caregivers have 10 times the risk of developing significant health problems.”
The psychiatrist had spent about three minutes evaluating him. “What month is it?” he asked. Donald considered the question for some time. “February?” he tentatively answered. It was mid-July. “What day is it?” “Monday?” It was Thursday. “Where did you grow up?” “Detroit!” Donald replied with certainty.
“He’s got good long-term memory, but no short-term memory,” the psychiatrist added.
Of course I knew that. I’ve been living with him for nearly three years.
“You’ve got a mess to deal with!” said the discharge planner.
I learned that two days before when he was brought to the hospital in a crisis.
Now it’s been three weeks since I brought him home from the hospital. I’m trying to take care of him and, yes, the psychiatrist was right. It’s a roller coaster. I can’t do it. Options aren’t easily available; more about that below.
When I met him three years ago, he was a considerate, caring, thoughtful person living in an apartment down the hall from me. We became friends, spending much time together. Neither of us liked our apartment building. He suggested we get an apartment together.
I thought seriously about this. He admitted having memory problems, but they seemed slight. His judgment wasn’t impaired. I rationalized he probably has mild cognitive impairment with a few good years before he gets worse.
The tipping point was that he was open to anything I suggested; he readily followed my suggestions. Also, I knew I’d be lonely if I lived alone. And, as a retired social worker, I needed a purpose. I figured I’d place him in assisted living when the time came.
Financially, it made a lot of sense for us to share; neither of us has much. We found a great apartment and had a good life together until now. Though his cognitive impairment gradually and slowly got worse and he was diagnosed with vascular dementia, he continued to be agreeable and easy to take care of.
He had only me in his life. He’d never been married, had no kids, no family.
Gradually, with his permission, I took over more and more areas of his life, his bank accounts, his mail, socialization, doctor’s appointments, medication. I realized I was his only gateway to the outside; he was able to interact with the world only through me.
Bad days, worse days
Donald was taken to the hospital in a crisis when he shut down totally, like a stroke.
Suddenly, he couldn’t walk, couldn’t talk, couldn’t comprehend anything, had a blank look. The ER found nothing wrong with him physically, admitted him to in-patient where he began to revive.
However, he was agitated, restless, couldn’t sit still, couldn’t sleep. I got a call at 7 a.m. asking me to come as they couldn’t calm him down. Numerous tranquilizers didn’t help. As he couldn’t walk well, stumbled around, tried to pull out his IVs, they had a sitter with him throughout his stay.
I brought him home. He’s continued to be agitated, is not sleeping well. Some days he has trouble eating, he can’t even get the food in his mouth.
Continence is an issue.
There are bad days and there are worse days. On the worst days I pray for the bad days.
Yes, it’s like a roller coaster, with sweeping waves of sadness. But no highs.
I’ve had a steep learning curve. I thought he’d slowly decline and I’d have time to find a caring alternative for him. But no, he had a sudden and steep decline. I know I must move him soon.
I’ve learned that the three levels of care include assisted living facilities, skilled nursing facilities and memory care units.
Medicare does not pay for any of these long-term care facilities. To be eligible for skilled nursing, one must need physical care; those with needs because of dementia go to assisted living or memory care. Donald is in great shape physically.
I’ve located a memory care unit near me that seems good. Medicare does not pay for care; I’d have to use his savings. Assisted living charges for the level of care required; memory care units have a flat fee covering every service. As he needs every level of care, memory care is the best option.
Medicaid is the main source of funding long-term care for those with limited income and assets. Once he’s qualified, Medicaid will cover most costs after he contributes his monthly income toward his care.
My challenges now are getting power of attorney over him and applying for Medicaid.
This is not the way I thought things would go, but I know I’ll get to where I need to be.
Barbara Pierce is a retired licensed clinical social worker with many years of experience helping people. If you would like to purchase a copy of her book, “When You Come to the Edge: Aging” or if you have questions for her, contact her at barbarapierce06@yahoo.com.