A Break from The Routine, the Difficulties, and Why I Do This

I took care of my mom from Friday 2 p.m. until Sunday 11 a.m. today. When she left with my brother, I found I could not control my happiness. I do not normally feel this excited or happy about almost anything. I was jumping up and down, literally, and yelling in a high-pitched tone (that made Bamba take shelter under the dining table) about how free I felt.

A day with my mother these days looks like this:

- starting at 8 a.m.: pills, blood test, insulin; breakfast; read newspaper (an old routine for her, even though she doesn't appear to be able to understand anything she reads); shower & dress; pray; then activities to keep her busy, like: walking or coloring or a Kindergarten learning book, or a card game, a board game, dancing - often to Indian music on a CD, or going over photo albums - sometimes putting them together; she can also sew buttons & hems, and knit simple rows; and she loves chopping vegetables & fruits; I have tried to get her to write - about anything at all, and I give her ideas, but she refuses, except this weekend I asked her to write a letter to her brother in India and she managed to write a whole page, and some of it even made sense - so I might be onto something here.

- 11:30 a.m.: lunch; 1-2 hour walk; snack; more activities

- 5 p.m.: the medical routine again; dinner; 1-2 hour walk; watch an Indian movie on VCR

- 9 p.m.: snack; change for bed

The main difficulties in caring for my mother are:

(1) She cannot be left alone for a whole minute, or else she will do something inappropriate (more on this later).

(2) She wants to constantly be walking. Even if you walk with her for 2 hours, she still wants to go out and walk more. It's almost impossible to get her to stay & do any one thing. So, you have to keep finding activities to keep her interest.

(3) It's hard to get her to do something that you know is important for her health or hygiene: like drink water or remove extra layers of clothing on a super hot day, or change a wet diaper, or - well, there are grosser things I won't mention.

Some of the inappropriate things she does regularly:

- Eat constantly (she is diabetic). The solution is to lock the fridge and food cupboards. She will then constantly keep asking for food. I now get her to write down what she is eating as she is eating it (she can't remember names of foods, so I dictate - and I'm finding that she is forgetting how to spell words too). Then, when she asks for food, I show her the paper with her own handwriting showing what she ate and what time she ate it. I also write down when the next meal coming up is and what we're planning to eat then, and show her this too.

- Go through my purse (or any purse/wallet around) & take my money out & hide it. I keep forgetting to hide my purse, so I keep loosing money, but I'm getting better at it.

- Go outside with her slippers on, possibly pee in the yard on the grass. I have an alarm system, but again, I sometimes forget to arm it.

And forget about taking her shopping. She will eat food, open up bags and boxes, and stuff things into her pockets or purse or whereever she can. So, you have to have your shopping done beforehand.

OK, I wanted to get all the complaining out of my system first. Maybe I'm making it sound like she can't do anything right. And why am I choosing this over the nursing home, as recommended by the doctors, nurses, social worker, and some family members?

Well, it's when we're cutting the vegetables, and I look at her and smile, and she smiles back. Or when I'm walking with her and every 90 seconds she says "I'm so happy to be walking", or sometimes: "... to be walking WITH YOU." Or when I tuck her into bed and kiss her good night.

All the things that she did not do to me that I wish she had done, I do to her. I have a strange concept of revenge, no? I remember when I was the assistant and she was the main chef - in India we'd both be removing corriander leaves from their stems (a painstaking operation), but there was no connection then, and definitely no smiling or happiness or good feelings of any kind whatsoever. I am so glad that someday I will be able to look back & actually think of sharing a bit of happiness with her, even if it started after her dementia.