Falling Leaves What to do now that you’ve tried everything?

The cold snap has finally broken. We had highs in the single digits and windchills in the minuses. We just dug in and, thankfully, had heat. There were a number of deaths due to hypothermia reported in Cleveland. I worried about the homeless.

We’re going to go deeper into the dementia experience today.

There comes a time when it’s all too much. He’s wandering – leaving the house at all hours or near a busy highway. She keeps turning on the stove’s burners, leaving them unattended. You’re afraid he’ll hurt you.

You face the inevitable conclusion: she’s no longer safe in your house.

And for us – the fear of being “put away” from our caregiver, room, family, house and community feels so big. The thought of being brought to a residential facility brings forth many questions. What will they do to me?  Will they get my medications right? Am I going to have to share a room? 

I interviewed my wife, Jenny, so that you could watch the process we went through.

“We started to see mom not remember things and losing track of conversations,” Jenny said. “She began to get lost when she was driving. She would go to the doctor without having an appointment. She started to fall more and more.

“All of that plus the fact I worked in a neurology practice I decided to get her an appointment. It was hard to see her go to this. She had been an independent woman and now was failing. My sister Vicki, who lived a couple of hours from us and mom, was a great sounding board through this. She was there any time I needed her.”

Mom was teetering on not being able to help herself. With that realization, we started to explore other possibilities. Visiting community care centers with mom comforted us and gave her a positive picture of moving to a place like that.

We ended up moving mom to the city where Vicki and Mom’s twin lived. After a short time Jenny and Vicki began to see that she needed more intense care.

“My sister, Vicki, started looking into facilities that we could place mom in,” Jenny said. “My role was primarily to assist in seeing how we could pay for each facility and make sure that we could afford it. We were able to get power of attorney so I had financial power of lattorney and my sister had healthcare power of attorney so we were covered there.”

Jenny said, “How I felt about this was it was rough, but my overriding thing even at that time with mom was that I wanted to keep her safe and I thought that a safe living environment would make that happen.  

“So assisted living was in my mind,” Jenny said. “Mom having all her meals made, the socialization programs, medication monitoring and numerous caregivers on the floor with her when she needed something seemed wonderful. But I think for mom it felt like a major loss of freedom, which it was, and she was not happy.”

I remember leaving visits where mom would beg “to go home.” That was gut-wrenching.

“My role at that time as mentioned earlier was financial,” Jenny said. “I just took care of all the payments. So, when mom would have problems or not like the facility she was in, or want to run away, I was now the sounding board. Vicki was a godsend, an angel. She was my eyes and ears and she really did everything she could to make sure that mom was able to be safe while being able to live as long as possible.”

The final move was to the locked Alzheimer's unit. She had walked off one of the facilities she had been at, and this was a safe alternative. They took good care of her there.

“I felt close to mom through all of this even though she wasn't aware sometimes of anything that was happening,” Jenny said. “Judi and I used to take her milkshakes and I've told people this story about when we would walk in and and mom would get a smile on her face when she'd see the milkshake so that always made me feel happy. At the same time it was also very sad. It was hard to see this woman leave and that's really what happened she left. I don't have any regrets. I feel like Vicki and I did everything we could in our power to take care of mom.”

The residential facilities were bright, clean, and people didn’t just sit around. They each had their own apartment or room and plenty of social events to attend. Staff were visible.

Before you get to the point when you realize you have to make a move, visit a local facility.

I have a live chat thread open, so join us. You can talk about these decisions, bring up other issues or learn more about dementia from those who have it. And subscribe. It’s free.

Please remember, you’re not alone.

Till next Monday…

Judi

“In the process of letting go, you will lose many things from the past, but you will find yourself.”       Deepak Chopra