Dementia Journal, Jan. 30, 2017 in Daydreaming on the Porch

This week revealed such startling contrasts in Mom’s condition that it’s literally mind-boggling. Over the past two months her condition has deteriorated significantly, but with oasis moments of times of serenity and near normalcy (which I really don’t know what that is anymore). I’ll explain in a minute.

By deterioration, I mean her memory, mental awareness and physical condition. She sleeps a lot more. We can’t give her much, if any, solid food, and during the past month have relied on pureed baby foods (fruit, vegetables and chicken and beef) which she eats much more quickly and readily than anything solid we give her. And she seems to enjoy it. Plus we are supplementing each meal with nutrition shakes now whereas before we were only giving her one at night. Her diabetes, which has been under such good control for so long, has flared up, and despite our best efforts she’s inexplicably suffered a series of very scary lows, right around 6 pm at suppertime. Once it was in the middle of the day at 2 pm, and I took her blood sugar reading and it was 50. She become very weak and disoriented and couldn’t even hold a glass to drink from it. She’s only rarely, if ever, had these in past years and usually that’s been in the middle of the night. It seems to come on very quickly — one moment she’s ok and the next she has a lost look in her eyes like she has no idea where she is. Today we had to quickly let her drink a glass of orange juice with a cracker and peanut butter. In about 10 minutes she came out of the low, but it’s frightening. So, as if all the of manifestations of the advanced dementia were not enough, we have these experiences to deal with. She sleeps a great deal of the time now, too.

Now to the week of contrasts. My sister is here from Seattle and just in time to witness, in person and up close, Mom’s more frequent, rather terrifying personality changes. It’s started seemingly innocuously with a comment about how a favorite magazine was suspicious and could not be trusted.This rather quickly evolved into a full-blown bout of paranoia with her eyes starting to look wild with and the most hurtful things being said in rapid succession. She couldn’t trust anyone. We were all trying to harm her. She couldn’t believe she was being “treated this way” when we were bending over backward to cater to every need and soothe her mind after every fearful, hurtful utterance. When I tried to give her half a sedative pill to calm her down, she slapped it out of my hand the first time. That had never happened before. New territory. It took 20 minutes for us to coax her to take the pill and after about 30 minutes the episode subsided. My sister and I were both deeply shaken. How could our sweet, loving mother become this hostile, nasty, accusing “other person?” It’s the dementia, I know. It’s a brain disease. I get that. But why us? Why her?

Tonight by contrast she has been sweet, loving, serene, and easily engaged with some of the beautiful home and garden magazines I subscribe for us to read. She repeated things as she usually does, but mostly it was a pleasant evening, like old times almost (I am speaking relatively). When I got her in bed tonight, she kept thanking me for all I was doing, said she couldn’t do without me, and that I was the best son she could ever have. Over and over she said this as she got settled in on her pillow and prepared for sleep. It’s now 3:30 am. She’s been sleeping since 11 pm with one call on the monitor to help her use the bathroom (the portable commode by her bed). And during that brief time she thanked me profusely. This is one reason it’s so difficult to consider putting her in a memory care facility. That, and she always breathes a sigh of relief when she asks where she is and I tell her she’s home. Home in Charleston. She’s immensely relieved when I tell her that.

So I’m lying her in bed now listening to “Healing” music by Anugama. Next, it’s “Soul Doves” on the album “The Emerald Way.” So calming and relaxing. This is my favorite time of day — the middle of the night when most everyone else in my immediate surrounding world is asleep, as normal people should be.

The day after the horrible episode, I finally got on the phone with people at several comprehensive care facilities. The first one I called is probably the best in the area from all I’ve heard, but they have a year waiting list. Next I contact a new state of the art dementia care facility, about six miles away n a nice, wooded section of the city. It was beautifully appointed, tastefully furnished and designed, and full of activities for the residents. There were seven shared rooms available, no private rooms. But as the tour progressed, I realized Mom might not qualify. One has to be ambulatory and capable of feeding oneself. Mom’s marginal in both areas. She needs constant assistance with her walker to get anywhere in the house. She has a transport chair we may have to start using to get her to the bathroom. That might work at the facility, in fact it would be a necessity. But also, she’s often very sleepy or sleeping at breakfast and lunch so that we have to constantly coax her to eat and drink. She can still hold utensils and feed herself, but has to be directed as to what to eat when and in what order.

The place was very cheerful and nicely designed and didn’t seem institutional at all. It’s part of a large chains of such places nationwide. But unfortunately, I discovered there were only two aides on the night shift for the current 47 residents. This may have met minimum nighttime staffing requirements, but with Mom getting up 2-3 times a night, I didn’t see this working. She needs to much attention, so much care, so much love — how could two aides respond to 47 residents at night, caring for Mom properly with her demands and calls to come in the night to assist her? I don’t know. Maybe I’m missing something. If you’re going to have to be in a facility, this certainly looked like the one to be in. It’s even “reasonably” priced as such facilities go, costing $4,800 a month for a shared room and 6,200 a month for a private room. Our insurance would cover most of it, I believe. But then I came to realize that maybe this was not the intensive care memory facility Mom would require.

But I came back home after the tour and lunch with my sister (very little appetite) and saw Mom and didn’t see how it would be possible to put her there or any other place unless it was absolutely necessary and I simply couldn’t care for her at home anymore. I wonder if I am getting to that point now or if I can continue to soldier on with additional help, possibly hospice involved. Maybe if she was at the place I have been describing she might improve and enjoy having a roommate. Was that even conceivable? She’d get physical therapy. I just don’t know. I’m so deeply conflicted between my love for her that compels me to keep her at home and the desire to disconnect, relinquish her to the care of others, “strangers” as it were. The next step would be to fill out an application and have a nurse come out and evaluate Mom. And we’re not even sure by any stretch she’s qualify for the place. Her condition may be too far advanced.

Having said all this, I am thinking seriously now for the first time that maybe I should retire before summer or during summer. I will be 66 in April. I can devote my full energies and attention to Mom’s care with the help of our current caregivers, and I won’t be constantly stressed at work wondering when or if a caregiver on duty will call with some problem or issue. Also, I used to really enjoy my work and it gave me a lot of satisfaction, but I’ve grown tired to my job and feel I need to have time, after 22 years, to really think about my life and future and become engaged in the community with volunteer work. I have many contacts in the nonprofit community, so finding something to do should not be a problem. Plus, I can take free courses at the nearby college.

The situation with Mom has created a fork in the road. The fork I am now thinking of taking will open up and whole new chapter in the final stage of my life. I may or may not be able to continue taking care of Mom, but there will be a huge lessening of stress from not having to be at work and meet all the demands associated with that. I see myself on a new adventure soon. “Retirement” may be what rescues me from my present precarious situation and creates in me a new spirit and desire to live more fully and creatively, now and in the immediate future, and when Mom is gone. I think she would very much approve of this.