Welcome to the Misadventures of Widowhood blog!

Welcome to my World---Woman, widow. senior citizen seeking to live out my days with a sense of whimsy as I search for inner peace and friendships. Jeez, that sounds like a profile on a dating app and I have zero interest in them, having lost my soul mate of 42 years. Life was good until it wasn't when my husband had a massive stroke and I spent the next 12 1/2 years as his caregiver. This blog has documented the pain and heartache of loss, my dark humor, my sweetest memories and, yes, even my pity parties and finally, moving past it all. And now I’m ready for a new start, in a new location---a continuum care campus in West Michigan, U.S.A. Some people say I have a quirky sense of humor that shows up from time to time in this blog. Others say I make some keen observations about life and growing older. (Just remember I'm looking through my prism which may or may not be the full story.) Stick around, read a while. I'm sure we'll have things in common. Your comments are welcome and encouraged. Let's get a dialogue going! Jean

Saturday, November 26, 2022

The Siblings and our Parents

My brother is settling into Memory Care quite well although an aid there just told me he thinks he’s in a hospital. I’m not surprised because on one of my visits he asked me if he was sick and dying because, he said, people keep coming into his room in the middle of the night to check his back or his lungs. I happened to run into the director of the dementia activities program a few days after that conversation so I asked her what might be going on at night to give him that idea and she told me with some patients they check to see if they are still dry and need to be walked to the bathroom. Mystery solved. 

I learned with my dad’s dementia that sometimes what we thought was an illusion in his head was actually real. For several weeks Dad claimed he had a chipmunk in his bed and no one believed him. That is until on a visit I sat in the living room and watched one come out from behind a piece of furniture and run the full length of his house and go directly into my Dad’s bedroom. This is another good reason to take the advice of a dementia expert I heard speak recently to never to argue with dementia patients. Once in awhile they’re right (my words and conjecture, not hers). But she did say dementia patients are losing their language skills to make what is going on with them clear to others. (I feel that happening to me when I talk and it’s downright scary.)

Dad also had what we thought was a disconnect with reality when he kept complaining that he couldn’t sleep at night because “there were people in his living room having a party.” Long story short my brother put a timer on his TV and that ended the “parties.” My brother and I spent five years problem solving at dad’s house to keep him safe and happy and to this day I’m proud of what we accomplished. Those years brought some of the best memories of bonding with dad but also some of worse fights between my brother and me. As with most kids in that stage of life---trying their best to care for an aging parent---we were under a lot of stress and after Dad passed it took a year before the tension between my brother and I dissipated.

After my mom died in 1983 I spent a few years gathering stories and memories from everyone in my family. It was my way of grieving her. Her death was tragic and painful because it was spiked with preventable missteps in the medical community. A doctor afterward told me having all your blood slowing seep out of your organs into your body cavity is one of the most painful ways to die and the fact that her doctor told my brother and me that she was just an old woman looking for attention, that there was nothing wrong with her, is another reason why when an older person asks a question like my brother did, I try to understand where it’s coming from and answer honestly. For example, I told my brother the day he asked me if he was dying that his daughters would have told me if that were true and they hadn't said anything remotely like that to me. The "pause and pivot to an alternative topic" approach is the recommended method of handling much of what dementia patients obsess about but I think/hope I'm still good enough at reading my brother to know when to use it and when to give him a red meat answer.

Back to Mom: It wasn’t just the weeks of pain Mom went through that were preventable if she’d been taken seriously but the ambulance that picked her up the day she died caught on fire on the way the hospital, something Ford Motor who built that model ambulance knew was happening on trips longer than x-number of miles. We didn’t take part in the class action suit that followed a bunch of fires like what delayed mom's trip to ER but the last day to decide whether or not to join it was one of the hardest days of my life. But I had to let go of the pain of losing her and a lawsuit would have kept it going. 

Complying the family stories finally gave me closure. And all those stories and memories I had gathered I pulled together and I printed out old school with my computer. I punched holes in the pages and bound all 125 pages of single spaced typing together plus sections of photos, hand writing samples, poetry by family and favorite recipes. I hadn’t read the book in decades but yesterday I took my copy down to my brother’s building and read him the first chapter. My plan is to read to him once a week and if my first reading is any indication it’s going to be a warm and rewarding experience for both of us. 

In the first chapter are lots of quotes of things my dad said and my brother shocked me when I’d start reading a couple of them and Jerry would finish them. "How did you know that?" I asked at one point and he said, "Dad told that story about grandpa a lot." As a read, I’d stop occasionally so we could talk about whether or not he remembered things like being in charge of crushing tin cans to put out to the curb during WWII and most often he did and he’d add a little more color to the story than what I had written on the pages. All and all reviewing our lives this way is going to be a bonding experience. I should probably run the idea past the director of the dementia activities program before I get too far into the project. But I’m pretty sure it fits in perfectly with what they are trying to accomplish in Memory Care. Fingers crossed. ©

51 comments:

  1. What a brilliant idea to share the stories. Bless you!

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    1. It's not an original idea to read to someone in care facilities. I've known about the concept for decades. Sometimes people struggle with what to talk about but they enjoy the sound of a family member's voice.

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  2. I think this is a wonderful project for you and your brother to work on together. It's obvious that having you read these stories brings back memories for him and he can add/flesh out the stories. A wonderful tribute to your mother.

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  3. What an amazing and wonderful way to remember someone dear and close to you. You and your brother will have many happy hours remembering. I really enjoyed reading this and will be back to read more of your blog.

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    1. Thanks for stopping by to read. I agree, I think we will enjoy the project. I only wish it were summer so we could sit outside by the lake when while doing it.

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  4. What a wonderful gift you are giving your nieces and nephews, if any, by having compiled that document, and your brother, by reading to him and asking for his memories. I wish we'd had something like that for my mother-in-law.

    I'm so sorry to hear about your mother's experience. There's probably not a woman among us who hasn't been given the "you're an old woman" dismissive treatment as we age. I was approaching 60 when I went to a new doctor, describing my vigorous life until recent months and my worry about my constant exhaustion and pain. His back to me, he turned to face me for the first time, pronouncing, "You are almost 60, you know" as he wrote out three new prescriptions. What was he missing? I had developed rheumatoid arthritis, and, according to my rheumatologist I found a couple of months later, my numbers showed a "poor" prognosis without disease-modifying treatments.

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    1. Doesn't that just make your blood boil to have a doctor dismiss our concerns as just "age related" and a "just live with it" attitude. Sure, many things are age related but there is still a desire to understand what is going on and treatments to be had that makes the "living with it" easier!

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  5. Your post brought tears to my eyes; you wrote so lovingly of your family, even the tough times. How wonderful you have these stories that your brother can elaborate on.

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    1. I had sent out a questionnaire to everyone in the family and asked them to answer them in writing or on a cassette tape. Only one person didn't do it and as soon as he got a copy of the book he said, "I screwed up!" In-laws got a different set of questions but were included to.

      I have lots of 'show & tell' stuff to bring down too. Last week I brought some toy rings we used to get from sending box tops into company. Lone Ranger, Captain Midnight---etc. I printed off the history of radio premiums and we had a good time talking about them.

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  6. I'll bet one of the main reasons your brother is transitioning well, is because you are near him. His daughters are probably very grateful about that, also. So much of the aging process is still a mystery. However, we have more choices than we used to. I can still remember visiting my grandmother in the nursing home. It was typical for its time. It looked like a hospital--not homey at all. I think the goal was simply to keep the patients fed and clean (not an easy task). Their physical needs were met but their spiritual, social and emotional needs probably waned.

    What a tragic ending your mother had! And to think that the ambulance she was in caught fire on the way to ER. That is traumatic. You certainly had much to deal with during that time. Don't you look back and wonder how you made it through every day? Somehow we do, though.

    How wonderful that you have created a book about your family! It should bring back many happy memories to you and your brother as you read it together. It will be a true gift to your nieces, and their families, too. More of us should collect our memories while we still can!

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  7. Thank you so much for this beautiful post.

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  8. I'm very sorry for the tragedy surrounding your dear mother. How painful for everyone.

    Your visits with your brother sound like they are enriching you both. I'm so glad.

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    1. Yes, it will be. We've never been what I call close siblings----not like his daughters are. We saw each other at holidays and special occasions but we lived to far away to socialize much in between.

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  9. No siblings for me, but I sure enough had a mother who required care/supervision, even though she was able to stay in her home. I learned the "pause and pivot to an alternative topic" approach on my own. It's nice to know that people who are experienced in the field of elder care consider it a good technique.

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    1. Yup, they teach it. Instinctively you figured it out and don't some people use the same technique with children?

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    2. I hadn't thought of it, but yes, they do. Children can be easily distracted too.

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  10. It is wonderful of you to take these memory trips with your brother by reading the painstaking family history you have compiled. Think this will be great for you both.
    What a shame about your Mom. I recently had a doctor dismiss my complaints with a "well you aren't a spring chicken anymore." Wish I could be around when he gets old.

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    1. What do doctors think when they go into the profession, that they aren't going to spend their days listening to people talk about their problems?

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  11. Jean, you are honoring your family in all the things you do. Caring for someone with dementia is such a tightrope walk at times. Like you say, what's real & what's not? Justin Halpern published a book titled Sh*t My Dad Says after a successful twitter feed he had produced. In an attempt to balance the sometimes rocky relationship with my own mother, I write stories about sh*t she's said that make me laugh. Like the time she drove into the house (she was famous for stepping on the gas pedal instead of the brake) & said she didn't tell anyone until she could laugh like everyone else. Now she has dementia. There's something about caring for a person who can't give back that draws us into a "network of human concern." And yet there are such profound moments of connection. Last week she told me I was a good daughter, words I'd never heard from her before. It's said that those with dementia don't always know cognitively but have an emotional memory of those around them. I hope I can leave my mom with peaceful emotional memory at the end of her life.

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    1. Gosh, I can really identify with what you wrote here. There really IS something the draws us into a "network of human concern" when dealing with someone who has dementia. Your mom telling you that you are a good daughter is the kind of take ways that fills your heart with both pride and sadness at the same time. I'm glad you're keeping track of the "sh*t she says." I did the same with my dad and I really loved reading in the years after he died.

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    2. I can really relate to Mona's post, as well as what you've written here. The last words my mom said to me were "my sweet girl" which she hadn't said in decades (she lived for another year or more afterward). I'm so grateful about that, because she had a long, hard decline before she died. I often wish that I had known about your blog during those years because you have such good insights about dealing with memory-impaired people.
      Nina

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    3. Nina, I don't know how insightful I am, I've just had some life experiences that caused me to soak up some tips from people who really are/were good with working with dementia. I'm so glad you have those words from your mom. Things like that really make a family caregiver feel it's worth the draining work.

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  12. Oh, I love that you gathered all that info re: your family history and stories and are sharing it with your brother. So sweet and I love that he is adding his memories to it.

    My favorite hospice volunteer activity is gathering and writing up Life Stories for patients. I have heard some amazing stories and met some wonderful people this way. I've recorded hours of interviews with my 90 yo mom and am putting them together now. I hope to get it all done soon, but it's a huge project. Kudos to you for requesting info from all your family members. What a great legacy you are leaving your family.

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    1. I printed and distributed twelve copies and if even one of them is still around in a 100 years it will make it worth the effort. I think because I didn't have grandparents to tell me family history I wanted to make sure the youngest people in my family would have a resource to know more about their family history---when they got to an age where they wondered about.

      Your project with your mom is wonderful and I know from experience it's a huge project to pull together. I didn't know you are a hospice volunteer. I've heard from others in that field who find it very rewarding.

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  13. What a wonderful idea, for sharing time and memories with your brother! Loved this post, Jean.

    Deb

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  14. Thank you for sharing both the painful story of your mother's death and the brilliant idea for reading family stories to your brother so that you both can talk about them.

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    1. I really wish I'd thought about reading to Don's mother when she was in assisted living. She couldn't carry on a conversation but I'll bet we could have found something to read that she would have enjoyed. Maybe like the Chicken Soup series. By the time my dad needed more of our time, I had the Chicken Soup for Golfers book and I read stories out of it to him. He enjoyed them and he shared some of his own on the golf course.

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  15. What a terrible way to lose your mom! And so senselessly cruel on many levels. Your reading project with your brother is healing and perfect for both of you.

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    1. It really was. Thankfully, the doctor who told us my mom was just looking for attention quit it practice and became a doctor in the military. Maybe dealing with younger patience he'd actually listen to them. My mom had gone to see him many times complaining of pain over several months. By the time my brother and I went with her, his mind was made up.

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  16. Talking about your life the way you do is the heart of why most of us read your blog! There's absolutely heartache when a loved one develops dementia, but there shouldn't be any shame or secrecy. If people haven't known someone with dementia by the time they're 50, they've been spared from reality. What you’ve learned is interesting and might be very helpful to anyone who might need this information in the future.

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    1. I hope it's helpful. When I was blogging in the stroke community and going to a lot of speech therapies that others didn't have access to I started sharing tips and after ten years of doing that it's just part of my writing style now.

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  17. Tears in my eyes. Some sad and some happy. Thank you for sharing your journey, good and bad.

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  18. I really liked this post me and my siblings talk about mum & dad a lot

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  19. This post really speaks to me. I can identify with everything you said here because my mom recently passed in memory care. But what really struck me was the chipmunk story. Years ago my mil was in the hospital for a serious bacterial infection and she was on morphine. She was in a room with an obnoxious woman whose family snuck her grandchildren up the back steps to visit (children weren't allowed.) I worked nearby and visited her at lunchtime so I witnessed the chaos caused by the little darlings. My sil in the other hand visited her mom in the evenings. She called us one night so upset, reporting mom was out of her head talking about kids dancing around the room and jumping on the bed. She was terribly worried and upset that the morphine was being overdosed. I calmed her down and told her that mom was fine there were kids dancing and jumping in her room. She was shocked but extremely relieved and thankfully ms. obnoxious left shortly after.

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    1. Thanks for sharing that story. I'm sure your sister-in-law was grateful to learn the truth. But your poor M-I-L could have gotten her morphine cut back had you not seen the kids and no one believed her.

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  20. That's a great way to share memories with your brother. And you can add to your stories with the details he can remember. Good for both of you!
    My brother is just starting to show some signs of dementia but the doctors say not yet but he might be heading that way... My Dad had Alzheimer's so we are always looking for it. My brother is only 73, tho, so hopefully not yet...

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    1. Fair or not, when we hit a certain age we all start looking for signs. Dementia is a cruel twist of fate.

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  21. I don't have any experience of taking care of patients with dementia but I think the book you compiled would be a great source of memories that he can relive on his good days. I think it is also good for the two of you to share and enjoy each other's company while you can. Great idea.

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    1. Yes, it will be. Otherwise we'd probably struggle with something to talk about.

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  22. What a loving and lovely way to bring memories and bonding to your brother -- and you.

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  23. I like your idea of reading to your brother the family history that you wrote.

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    1. Reading to someone in assisted living or memory care makes visiting easier.

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  24. So many things you wrote about here hit home. Mom and dad relied on each other so much until mom died at 91, right before Covid. Poor dad was dealing with grief at the same time everyone was isolated in their assisted living units. I think the strongest bond I’ll ever experience was how my brothers and I banded together from a distance with dad during those last 2 years. We had the same thought you had, about the comfort of a familiar voice, so split up shifts between us to keep a phone line open to Dad’s echo so he’d have someone “with him” for several hours a day, especially during meals. We’d keep our cell phones on mute and go about our lives when he wasn’t talking, but would unmute the moment he’d say something, so he’d get a response. We were so afraid that in the complete isolation of that year he’d just drift away from us. But this got him through. He did have another incentive. He was determined to live long enough to vote Trump out. I was the one who broke the news to him that filing his absentee ballot wasn’t enough, that he needed to hold on another month because in Michigan they invalidate it if you die before Election Day. But he made that and a half year more.

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    1. What a heartwarming and clever way your family came together to care for your dad. Thanks for sharing the way you guys used his Echo. These devices sure to can help with parent care. Love that is got to see Trump defeated, too.

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  25. I think your idea is a terrific one and I can't imagine the director would have anything negative to say about it. My cousin used to visit hospice patients, some in memory care, taking notes of their "life stories" for their children. It's a wonderful thing to do. I'm so glad your brother has you close at hand. This is a beautiful post, Jean.

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    1. Thank you. A Hospice worker would have a hard time getting my life story out of me. I'd just tell her or him to read my blog. LoL

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  26. You and your Brother reminiscing and the sharing of Family History I can only see as a Positive activity in his days in Memory Care. I found that with The Man, stimulating his Brain with Memories he could recall, gave him confidence and bit by bit he began to recall even more. The Brain is so mysterious and has so many ways to redirect function when an area of it is damaged or fails. I'm sure you're enjoying the time together as much as he probably is, not many people can share as much of our History as our Loved Ones and Oldest of Friends.

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    1. Once my brother is gone (or me) there is no one left who knows our complete histories.

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