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What if You Knew Alzheimer’s Was Coming for You?
Wow, great article!!! I do, I mean I haven’t had the genetic testing, but I know, Alzheimer’s or some other type of dementia is coming for me, sooner or later. What I am doing is preparing and fighting. I prepare by trying to keep myself healthy, active, and by getting out of debt by the time I retire in three years. I fight feverishly by raising money for and walking in the Alzheimer’s Association’s Walk to End Alzheimer’s, by wearing purple three months out of every year, and trying to raise awareness around me and in social media. I get so gung-ho at it all that people get tired of seeing my purple, hearing me talk about my cause, and start begging for me to take them off my Facebook group (when I wasn’t even posting to a group, was just on my FB wall/timeline.
What if you knew, what would you do?
Tips for Managing Difficult Caregiver Emotions
Good article. Oh the emotions! Floods of them! I rarely felt like I was doing anything right when I was my mother’s caregiver. The guilt was always there. I grieved even before she passed on because so much of her had already died. I was hurt and angry because she no longer knew me. All of the emotions were amplified by just being so tired and feeling I couldn’t do it much longer but feeling even more guilty for that as well. And then when she was gone, the grief and guilt were almost unbearable at times.
I am sure my brother-in-law feels some of those same emotions as he cares for my sister. His has been different, very tiring no doubt, but the Parkinson’s has crippled my sister only physically until recently when the dementia began.
And I feel guilt for not being there more often, for not having longer phone conversations when she was able to. And I dread seeing in the condition she is in when I visit this weekend, dread saying goodbye, and of course I feel guilty about all of that.
I am thankful, though, that the dementia didn’t come until late in my sister’s Parkinson’s, and though there is the sundowning there was in my mother’s Alzheimer’s, this seems to be different, wildly swinging from moments of clarity to terrible confusion.
This Thanksgiving season as always it is good to think of what we have to be thankful for, to know we are blessed, in the midst of our brokenness and guilt.
Come Spring (poem written in Nov. 23 years ago)
Seasonal depression and the sun-downing of dementia in my mother that winter made me try to find hope in another spring season I began going through nursery and seed catalogs planning our flower and vegetable gardens. It gave me something to look forward to and a hope for better days.
Now my sister and I face the same seasonal depression and her sundowning in probable Lewy Body dementia as she nears the end of her final stage of Alzheimer’s. She has loved growing thing as well. Even after she became crippled with Parkinson’s, we made sure she had peppers and tomatoes as well as flowers growing in pots on the patio where she could see them. When I visited last a couple months ago, she was still enjoying little bites of her cowhorn pepper along with her meals.
Gardening for my sister on this earth has come to an end no doubt, but in this depressing season and with all my losses, I must plan again and look forward to another spring season. I have let my gardening go over the past few years and it’s time to pick it up again.
Meanwhile I keep walking. Next September I will walk my 21st annual Alzheimer’s Walk. In the Memory Garden ceremony I will remember my sister as well as my mother. And I will keep working to see the day of the white flowers for the first survivors of Alzheimer’s and other dementia.
http://www.zarcrom.com/users/yeartorem/ComeSpring.html
Come Spring (poem as part of PowerPoint presentation)
What a month that was!!! And now, 23 years later, it’s my sister with probable Lewy Body dementia in end-stage Parkinson’s. I have often wondered, knowing all we know, having learned all we have learned, wouldn’t it make a huge difference when we ourselves reached that point. Apparently not. How I dread what is to come, though I know it is nothing to what my brother-in-law is going through, being right there, as my sister’s caregiver My nieces, her daughter’s, have already visited to say their goodbyes. It is my turn this weekend.
The second of my poems, written 23 years ago in October 1994. My family always called me by my middle name “Sue”. Almost from the beginning when I moved in to take care of her, my mother no longer knew who I was, would ask about “Sue”, worried about her, but never seemed to realize I was her. This was the hardest thing about being her caregiver, it angered me, it was maddening, I wanted so for her to know I was there, but I had to accept, I couldn’t do anything to change it, had to accept, and love her anyway.
Oh boy, were they that!!! I wish so much that I had known then all I know now. How I wish I had known not to correct her, to just play along, to not try to make my mother do anything.
I thought Alzheimer’s was bad, but this late stage Parkinson’s where my sister is now, and now with demeniia, can you imagine? Just imagine not being able to walk and the confusion sets in. From my research lately it’s Lewy Body dementia that seems to go along with late stage Parkinson’s, and I’m seeing the difference with my sister. It’s like there’s moments of complete clarity and then delusions or hallucinations and building terror. I had to stop my weekly phone calls because they were only seeming to make her confused, especially as I could only call when I got home from work, and by then sundowning, which I remember so well from my mother’s Alzheimer’s, had begun. I will go visit my sister this weekend, for what may well be the last time.
My Journal, August-October 1994
Those were my first three months as my mother’s caregiver. I had been separated for a couple of years, divorced for less than a year, in graduate school for about a year and a half, left grad school (12 hrs short) to be my mother’s caregiver. My sister had done it for a year and a half and was about to put her in a nursing home. I said no, it was my turn, besides school and relationships there hadn’t gone so great, I was ready to leave, had to stay the summer to make up an incomplete in a class from the summer before, then I was out of there and on the way home…
Now, 23 years later, my sister is in the last stage of Parkinson’s disease, with dementia beginning to gradually set in over the past few months. She has been crippled for years, about three weeks ago she became bedridden. At first hospice said 1-2 months, now they are saying she has just 2-3 weeks left.
I am again in a different town, did complete that Master’s degree just in time 19 years ago, have had a successful career getting close to 20 years now. I still have gone back home three or four times a year, was there a year ago in October for my brother’s funeral, and was there in September this year before my sister took one of several turns for the worse.
This was the first poem on my Web site, written in September 1994, just after I began taking care I’m my mother. Just a little background, I grew up on a farm, my parents farmed, but as they got older, the farming gradually decreased and eventually ended. In my mother’s memories it should still have been active and thriving, thus some of her distress as her Alzheimer’s worsened.
The link above will take you to what was the prologue, if you will, for my Web site, A Year to Remember, which I began in 1996 just after my mother’s death It began with just a couple pages like this one, then my journal that I’d kept while I was my mother’s caregiver, my poems, and links to everything I could find on Alzheimer’s. Then others started sending in their poems, articles and stories, and I put up pages for them. At one point it consisted of over 400 individual pages or HTML files. At one time it was on a list of the Top Ten Most Awarded Personal Homepages. Most of the awards were just ones that one personal site would give another, but there were a few pretty official ones too. One of those was 1st place in personal homepages from my ISP at the time. It was an awesome time to be out there in 1996, we all knew each other, didn’t matter where we lived, we wrote, we created graphic and music, we knit it all together with HTML, and we praised each others creations and gave awards. It was through this I began healing. Then in 2000 I put my journal, poems, and photos from the Web site into a book. And now from 2017 through the rest of my life, I shall blog, revamp the Web site, and publish 2nd editions of my books.
http://www.zarcrom.com/users/yeartorem/HerStory.html
This time I’m back to blogging seriously because I am fed up with Facebook and how people treat each other on there. It’s like I’m forbidden to post on Facebook, by a good friend, because she thinks I’ve got her on a group where I was sharing things about Alzheimer’s. There was no such group, I was simply posting to my Facebook wall, or timeline or whatever you call it. I tried to explain how she could unfollow me, but I don’t think it ever did sink in. So now it’s been about a week since I’ve posted on Facebook. So now I’m moving to Word Press, starting up my blog again, where I will share everything I wish about Alzheuser’s, including sharing my old Web site begun in 1996, and even sharing individual pages from it of my journal, my poems, other people’s poems they had sent to me back then, and their articles and stories. Which is what I had been doing on Facebook and maybe I had been doing it a bit much just because November is Alzheimer’s Awareness Month and National Family Caregivers Month. I tend to be gung-ho for the cause about three months out of every year with my posts and with wearing purple, and well, I guess people just get tired of it. So, I’m back to blogging, and eventually will revamp my old 1996 dinosaur of a Web site, oh yes, and begin working on 2nd editions of my two books. That should be enough to keep me out of trouble for a few years.
Remembering My Mother & Alzheimer's .. 