I’ve been wanting to post another blog entry because I am filled, and I mean FILLED, with feelings and thoughts and things to say about all the different dimensions of our lives now, not the least of which is awe and apprehension about having started this blog at all.
I am focusing on two benefits to writing a blog at this point in our journey – for those who know us, it helps answer the how’s-it-going questions, and for those who are living with a partner with dementia, it may help to hear how someone else manages the situation and that you are not alone on the path. This latter, I think, is the most important piece for me, as I read other people’s blogs, because dementia slowly drains the ability of the partner to contribute to the relationship. The caregiving partner does more work with less help, with less ability to plan together, dream together, strategize together, and with proportionately more responsibility for both lives. It gets scary sometimes, all the responsibility – but reading about other partners who are taking on this same challenge really, really helps.
A slow onset of dementia is good in that the caregiver has time to adjust to things. But watching someone slowly lose the ability to deal with their life is not good at all. I bounce back and forth all day from little feelings of mastery when I figure out how to arrange a pill reminder to grief about watching J weep with unspoken sorrow and frustration and then back again to relief as her emotional storm passes and we get on with the day.
These emotional storms began to occur a few years ago, mostly during moments of frustration, often with the computer. I’d hear a yell from the back room, and find J collapsed in tears on the bed. She’s yell for me to “go away!”, then say, “no, come here!” and would weep awhile. Once the tears were over, she’d ask for and accept help figuring out the computer challenge.
Now, she can go read email and occasionally write a reply, but her computer is getting old and keeps sending a message that it needs a new system upgrade. This upgrade would (they proudly announce) change the way the screen looks, so we are caught between a cranky email program running on an outdated system and making a change which she would find impossible to navigate at this point. Dilemmas like this characterize our days now.
I thought a year ago or so that perhaps she could use an ipad for email – the program is very simple and fills the screen so that nothing distracts from the mail function. But it turned out that the touch screen aspect was impossible for her to manage – she’d accidentally swipe the screen and everything would disappear, and she could not figure out how to get back to the mail program. Meanwhile, the frustration was unbearable for her, so it’s back to the computer with it’s nearly obsolete operating system.
I guess caregivers everywhere are constantly thinking up work-arounds for these dilemmas, practical and emotional. Soon, I will write more practical approaches to such dilemmas, and also will write about good times we’ve had with friends.
Thanks for reading!