The turning point, and becoming proactive

Thanks to Internet,  I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her after our move. A one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.
Read the full post

A new place, a new start

Life brings changes, and my mother’s dementia challenges were not the only one we faced. In addition to that responsibility, and our respective professions, my husband and I had other obligations, too. The current living and care arrangement was not working well, and our other work and responsibilities also needed attention. After a lot of thinking, we realized that we needed to move into an arrangement that was more amenable to care for my mother as well as for our other roles.

Now for a person with dementia, any disruption is traumatic, yet my mother had to be part of the relocation. But by this time, I was more sensitive to her concerns, and every day I’d spend an hour describing how we would make sure the relocation was comfortable in the new home, surrounded by people she knew and liked. What I told her every day was repetitive, but she’d listen to it as if hearing it the first time, and ask the same questions. I understood how difficult this was for her, and I found it easy to be gentle and patient and friendly.

We spent a lot of time planning the move. The new place would have adjacent apartments where we would be using one unit set up specifically for effective care, and live in the other. And we would minimize any sense of disorientation the move involved. We took with us every object that my mother needed to feel comfortable. Her sofa. Her favorite crockery. Her table-lamp. Her curtains. We coordinated the move so that she would have a familiar environment as soon as we reached the new apartment. Disruption had to be minimized.

The new place also had some plus points from her perspective. My mother has always wanted space and privacy, and not liked people watching her. In the apartment we prepared for her, she could sit undisturbed in one room while the attendant could move to the other room (but remain alert to sounds) when my mother wanted to be alone.

Most important, the new apartment contained all she needed, and nothing more. There was nothing in the apartment that could be stolen. So my mother didn’t need to worry about any theft. Even if she accused the attendant of theft, there was not much of a problem, because everyone knew the apartment had no objects that could be stolen. No cash. No jewelry. No curios or gadgets. Only a TV, a gas stove, a washing machine and a fridge. Beds, sofas.  None of these could be stolen. My mother’s clothes were there, of course, but nothing precious. The attendant had no reason to get tense even if my mother accused her of theft. And, just as important, my mother was not tense that things could get stolen. I’d told her (and I kept reminding her) that the money and everything was safely in lockers. I’d even kept her watch in a locker, I told her. I installed a whole bunch of big, readable clocks on every wall.

It was, in a way, the best possible setting for her, and the move made it possible.

Being in a new apartment complex had another big plus point: my mother no longer had to live up to the image of an intelligent, well-informed woman, except for a few people. Most neighbors did not know her, and accepted her as an old lady who rested most of the day. For most casual interactions, this reduced the pressure on my mother.

With my focus now more clearly on caregiving, I also equipped myself better for supporting the care.

Unfortunately, things did not go smoothly for the initial years after the move, partly because of attendants who just would not understand dementia, and because some frequent visitors refused to understand my mother’s problems and limitations and said hurtful things.My mother is happy and stable now, but it took many more adjustments to reach where we are today.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…
Read the full post

Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.
Read the full post

shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver 🙂 This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.
Read the full post