It happened again the other night — a simple night out listening to folk music, and I found myself in conversation with an earnest young social worker who was batting her eyes and assuring me that this caregiving experience was a “wonderful opportunity for personal growth.” She assured me she knew how hard it was (Not!) and continued, “But seriously, you need to look at it as a great experience.” I explained that putting most of my own personal work on hold for nine years did not strike me as a wonderful opportunity. Then, she started to outline all the wonderful programs we have in the valley to help caregivers. Almost all of which I have, of course, tried.
Oh the humanity.
I happened across this little book in the Vancouver Island Library catalogue — you can download it and read it on the electronic device of your choice. It is the account of Elizabeth Tierney’s decade-long struggle as a caregiver to her husband. The ups and downs of diagnosis, the tidbits of hope and conversation, the agonizing memories, the crazy-making trauma of it all – it’s all here captured in vivid (but brief) detail.
It also goes with unwavering courage into those mysterious end times, because Elizabeth nursed her husband at home until he eventually just died.
If you are a caregiver you will find yourself nodding and sometimes crying at the agony of this lost love. Because it is the tale of a struggle, but more than that, a love story.
One review in nursingtimes.net concluded: “Any nurse working in dementia care, or supervising health care assistants or home care workers would benefit from reading this book. But it is strong stuff, so be prepared to weep. Think of the awesome resilience of the author the next time you start to say that a complaining relative is “just feeling guilty”. It’s always much more complex. ”
You can find the e-book here: http://virl.bibliocommons.com/item/show/896852043_dignifying_dementia
Don seems to be sleeping more and more. I would estimate that 3 days a week he will sleep 12 to 14 hours a day, with a couple of extra small naps. I have checked carefully all his drug reactions and looked through my diaries and it does not seem to be food or drug related. I think the activities of daily living are just exhausting for him. This morning, it being a lovely day and my love’s mind being relatively clear, we went out into the garden to trim his beard. All went well, but when it was time to stand up and get into the house, he staggered in and fell on to his couch for a nap, and has been napping for two hours. I think the stress of holding it together for the hair cut was just so tiring he needed to rest afterward.
Yesterday, one of our caregivers took him to the Farmers’ Market to hear some music, but it was too much for him. When he got home he got slowly more confused and agitated — asking the same confused questions over and over and over — fortunately I thought to give him an aspirin and he went to sleep, sleeping in straight through from 9 pm until 8 am. I think these situations just overwhelm him now.
All this despite his continual agitation to go back to his old family homestead in Ontario. It breaks my heart when he asks, “When are we going?” “Will I ever see Slate Falls again?” (Of course, it is also crazy making.) It makes me want to scream — if you can’t handle a trip to the grocery store HOW are you going to travel? But of course, he doesn’t know, and has no ability to think it through. Kind of a comfortable place to be, I guess.
A follow up to the study reported in January: http://www.ncbi.nlm.nih.gov/pubmed/24473795
“CONCLUSIONS AND RELEVANCE:
Elevated serum DDE levels are associated with an increased risk for AD and carriers of an APOE4 ε4 allele may be more susceptible to the effects of DDE. Both DDT and DDE increase amyloid precursor protein levels, providing mechanistic plausibility for the association of DDE exposure with AD. Identifying people who have elevated levels of DDE and carry an APOE ε4 allele may lead to early identification of some cases of AD.”
The way I interpret this is that, IF it is residual DDT (DDE) rather than all sorts of pesticides, there is some hope that the current epidemic might calm down, since DDT was banned for most uses, in North America at least. in order to save the birds.
Also of course, although the irony is unbearably tragic, this would mean that younger members of families with cases of dementia are not faced with the same grim odds. I remember well my partner saying “Oh yes, we used to have bed bugs, but then they….went away.”
Hmmm – I know how they went away – DDT!
Saving the birds, saving ourselves?