The less memory J has, the longer the day is for me. I don’t know how it is for her, since without memory it may be just the opposite, that “length of day” may not have any meaning at all. It’s amazing to realize how our sense of a day, or a life, is strung together by memory – how a simple day has meaning because I hold in my mind the idea of what we will be doing later, and what we did earlier in the day.
Monday, we woke to snow, as predicted, but that meant I needed to check the storm cancellations for school closing. If the schools are closed, the gym is closed, and they were. So that meant J would not be attending her fitness class mid-morning, and I needed to come up with other activities.
Fortunately, S was coming to play recorder with J in the afternoon, so I only had to figure out the morning. I try to remember the phrase “contented involvement” – what the Savvy Caregiver program teaches as the main objective of a caregiver’s efforts. I attended this program last spring, as a two-hour class held over a 6-week period. I was so relieved to have a program like this to attend, but there were some snags. One, it was becoming more and more difficult to obtain a reliable 2-hour window at the same time each week (this was before Respite group), so I was somewhat anxious that I could even get to the group, much less stay calmly thru the whole thing (although I was in good company – everyone else had their phone on the table right next to them….!).
Then it turned out that it was a pilot/research project, and had a very fixed curriculum which had to be meticulously adhered to by the presenters. Hence the discussion was limited, and there was not the flexibility to adapt the presentation to the particular circumstances or experience and background of the participants. At times this was really frustrating – having gone to some lengths to get to the class, and not being able to really talk with the 6 or 7 others, for one thing – and having to spend much of the time listening to detailed descriptions of what a person with dementia acts like at various stages, when I was knee-deep in this experience 24/7.
The printed manual, though. turned out to be excellent, and I met other people who are in my position, and those links have sustained themselves as we run into each other at various community events ever since then.
But back to “contented involvement”….as I write this, it is Easter Sunday, the end of a long week with both ups and downs of my mood and J’s. Monday afternoon J did play recorder while I left the house for my support group at 2, then time for a nice poke around the library’s used book store – strangely calming and pleasant. On Tuesday, we had the monthly “Carefree Cafe” which is a homemade lunch put on by the Respite Program folks for people with dementia and their partners/caregivers. I think it is aimed at couples who no longer go out much, but we have been attending the last three months and have enjoyed meeting other people as well as the really good food. For some reason, J is either not noticing that this is for people with dementia, or is not talking about that – but in any case, she has been willing to attend, and it has been good for us both.
Later on Tuesday one of my sisters came for a two-night visit. This was such a relief, to just titrate the intensity of the one-on-one here at the house. On Wednesday J attended her afternoon Respite group, while my sister and I had a chance to run some errands and go for coffee and scones and spend a little private time together. Thursday, we all had a leisurely morning, read the paper, took a good walk together, played a round of RummiCube, and my sister headed out after lunch. J and I both took long naps that afternoon.
But Friday dawned with icy drizzle and the closing of the public schools….which meant the Respite Program was also closed. And from then until now, Sunday morning, it’s been a real challenge to arrange for “contented involvement”. I am so very aware of the value to me of the Respite Program – that 3-hour period brightens my day and also J’s, changes the channel, gets us out of the rut at home. Tomorrow, I will be taking J to Respite, beginning a 3-afternoons a week pattern. We were able to move the recorder session to Thursday afternoons, which leaves only Tuesday afternoons unprogrammed. That is when I have been having sisters visit for an overnight, to help fill that gap. It’s been a huge help and great relief and suppport to me. Thanks, you guys!
Today, Easter Sunday, we might get to one of the church services in town, if J is feeling well and wants to go. Earlier, she woke feeling sad and unwell, and went back to bed for a while. I think she is sad because her brother, who was going to visit this weekend, was unable to do so because his wife is very ill – J was very concerned to hear this, and has to learn it all over again, each time she looks at her email or the calendar.
So, we might drive down to the ocean and watch the surf, or go for a walk in the hillside park with the great view. Thanks for reading – the act of writing was a relief to me this morning, to collect my thoughts and share with friends and family.