Just want to express my deep sadness at TMF’s destruction of this board—of what had been such a uniquely rich source of connection, support, and valuable advice.
My love and caring to everyone still in the Fool environment.
=sheila
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Agreed Sheila. Previously I checked this board every day, Now it’s every once in a while.
B
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It all comes down to posting. If nobody posts, a board dies. If someone has something to say about taking care of parents, or spouses, then say it!
My wife and I lived in a split-level house. The TV and her lift-chair were on the second level, in what had started as the master bedroom. For the last year or more she didn’t leave there except for doctor’s visits. She lived in that chair, except bathroom breaks and changing clothes. The chair would raise her up, walker to and from the bathroom, where supports made it possible to use the can. A transfer bench into the shower. An adjacent bedroom was used for dressing and undressing. She sat on the bed. I sat on the floor to deal with the squeezy socks and shoes, as well as pants.
I did the shopping, cooking, laundry, mail, whatever else there was. She handled the bills. Her brain was in good shape right to the end, and at 75 she had only a few stray gray hairs. But her mobility kept going down, to the point that we had to call the EMTs to carry her down the stairs and out of the house - and back. I ordered a chair lift for the stairs, and a ramp for the front steps and sidewalk. They never got installed, as her last trip to the hospital - Mother’s Day - was followed by hospice at another hospital.
When she was in the hospital that last time I realized that I could not continue to care for her. How to deal with that was thrown in the air a week or so later when she had had enough. More tests were needed, which meant more manhandling her into machines, and she said No. No tests meant no treatment (assuming treatment was even possible), so that left hospice. Five days there, and it was over.
I don’t think I knew about this place until afterward, though I’ve been on the TMF boards since 2009. I don’t know that I would have made use of it then if I’d found it. But I’ve seen the value it provided to others. It is sad, yes, that there is no activity here. Perhaps new folks will find it and reach out here to share their load and get some commiseration and guidance. Or possibly some of those who were active before will become active again; the obstacles are not insurmountable.
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I loved coming each day to check on everyone and what they were experiencing. It was wonderful to see the support given in so many ways.
If folks have moved to another link please remind me what it is.
Robyn/jrdown
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Nowhere else. And the size and nature of the Fool community are so diminished now, and the spectrum of non-investment boards being almost nil, no one comes looking for what we provide here. And Alstro no longer posts here, though she’s a highly contributing regular on the FB group that formed from the liberal retire early board. It’s almost all politics politics politics, and very occasionally something more interesting. Alstro occasionally mentions her home situation.
Our group here had always been part—and a meaningful part—of my daily routine. It’s a true loss that there are so few of us now, and no one new. But I continue to stop by and look for posts—just not as regularly.
=sheila
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this is the first time I have ever posted on this or any other board. I have learned so much from everyone here. My name is Barb, and I over saw the care of my parents, they are both gone now. My husband is in the very early stages of some kind of dementia. He has not been diagnosed yet, had the AD test and didn’t flunk, but we all know there is a problem. After I found this board, I read everything that was posted for the last three years, then I went back to post #1 and started there. I made it to #3,500 when they changed the boards, stupid idea by the way, now I am struggling with them. I really don’t want this board to stop. I didn’t realize how much help I received from this board until it was gone. I miss reading it every day. Luckily I wrote a lot of things down I thought I might sometime need. I am trying to change the way I respond to DH on certain things. I am not looking forward to this phase of our lives. Thank you all, just wanted to let you know how important this board is.
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Please post more. If nothing else we can offer support.
B
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Barb — I am so moved by your post. And it makes the decimation of the heart of the Fool community—and this board—that much more painful. I hope we can keep it breathing.
My husband is also in an early phase of cognitive loss. The simple initial tests show Mild Cognitive Impairment, and the full workup that he’s had (directed by a cognitive neurologist at the NYU Langone Memory Center) doesn’t fit any diagnostic entity. His decline has so far been very very flow, and he’s still working. But we’ve just had a powerful emotional stress—I just had ankle replacement surgery. He was very very frightened. He’s greatly relieved now that the surgery itself is past tense (this past Monday), and I seem to be progressing well. But it will be some time before I’ll be actually walking again, and for now I hope around on a walker and can’t go out till my first postop visit with the surgeon on 12/20, when the cast and stitches are removed. Then it’s walker and knee scooter. His memory has become so much worse in the past week and a half, and since I came home from the hospital he’s been waking during the night in a panic and disoriented. My daughter is here, helping out, thank goodness. Our future together isn’t going to be what we had always looked forward to. My heart breaks for him and for us. And there is so nothing that can be done to stop the progression. So we’re facing a very similar situation.
=sheila
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Barb;
Welcome and know that it means a lot of those of us still around that you have received help. I wish you could experience what was the best of this board in its hey day and even the past three plus years. Less posters but those that did were consistent and a caring bunch. I do worry about Alstro because she has been in the thick of things and I have a hunch things are even worse and her husbster is closer to the end. Please share those things that worked when caring for your parents and we’d love to know the things you wrote down to help you and how they struck a cord. I am very sorry this is happening to your husband. I am sorry that you are going through the stress as well and that you now have your eyes opened as to the myriad ways dementia manifests. We do care and want to be here for you.
Robyn
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thank you for responding. A little background: my father passed 11 years ago, a couple months short of his 90th birthday. He was a type 2 diabetic, and had a few strokes. They weren’t real bad ones, but each one took a little toll on his health, however he went septis a couple months before he passed and passed from complications. We had great caregivers. There are 6 of us siblings, so we took care of the weekends, this lasted for roughly 8 yrs for Mom and Dad. (all of us enjoyed the time we spent, although we had to do things for Dad you never would have expected to do for your Dad). My Mom lived another 7 1/2 yrs. she was almost 97 when she passed of old age. She had a little dementia but was pretty much fully functional. She was very dehydrated when my father passed, I didn’t realize it until he passed. We started hydrating her and a lot of her memory returned, not all, but alot. I feel her loss was from the dehydration and not an illness. We had to put her into assisted living due to some problems at the house we had to fix, and she decided to just stay there. She was there almost 3 yrs. I over saw her care and delt with any problems, unless they were bad ones (only a couple times right at the end) and my brother would help with those. She was working on her jigsaw puzzles, which she loved, up to 3 days before she passed. She did say she wanted her girls and brother with her, so at that point she was never without one of us with her. The three siblings that lived out of town and out of state would stay with her at night, they took turns coming for a week at a time. One sibling has AD so was unable to help care for her at this point. That sibling turned 70 yesterday, so we had a birthday party with the siblings that could come, for her. she is close to the end, hospice says about 1 to 3 months. I realize it is going to be different this time around. We were lucky to have great caregivers for Mom also. Sorry this is so long. Thanks
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Sheila, I am so glad your ankle operation went well. Hopefully it will continue to heal and you will be back to your old schedule quickly. I am sorry to hear about your DH also. It is great that he can still work, it gives him something to focus on, my DH is aware his memory is getting bad.
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What a beautiful story of a family coming together to help.
I had no idea there was a link between dehydration and minor dementia. It makes a lot of sense though. Water is involved in just about every body process. Minor dementia often occurs with severe kidney disease.
You never need to apologize for a long post in this community. It is welcome here. People will read if/when they have the time. It takes a long post to tell a story.
I hope hospice for your sister is a good experience, as much as it can be. Hospice personnel are truly angels on earth.
HHP
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No apologies for a long post. Our “stories” evolved over time, and when you’re introducing yourself, they take time to tell. And it’s also the sense of drawing a profile of your burden, your experiences, sharing your realities with everyone here. When you are ready to talk, we are ready too listen—and so very glad to do so.
=sheila
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I don’t know for a fact that the dehydration caused her dementia, but because a lot of memory came back after we hydrated her, I felt that was so in her case. I do think that makes sense also.
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Welcome Barb
I just happened to come across this board and saw your post. There is a new dementia drug that seems to slow down progression of dementia. You might ask your PCP about it. HTH…doc
The new drug Aduhelm—approved specifically for Alzheimers, not dementia in general—comes along with a great deal of controversy. It is revoltingly expensive, and the cost is covered only if the patient is in a clinical trial. It requires regular monitoring for potential concerning brain changes, which is also costly. And a significant number of patients experience brain swelling or micro-bleeding. In fact, when the FDA was reviewing all of the data to determine approval or not, the initial committee of specialists concluded that it should not be approved. But the FDA overrode that and approved it anyway. And on top of this, for those early-stage patients who do experience benefit, it is typically small.
So…there’s a lot to keep in mind for anyone who wants to try it.
=sheila
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The Dr. talked about some drugs, but my DH wasn’t open to it, and the Dr didn’t push it. Not sure what drugs it was. the side effects of some of the drugs I saw, only a couple, seemed to have side effects that were similar to his symptoms. Wondering if they were just basically saying they don’t work.
@sheila727 wishing you rapid and complete healing with your ankle replacement. I’m glad that your daughter is helping your husband and you.
Wendy
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Thanks for asking! I’m progressing well and rapidly, according to my surgeon, who is thrilled with my progress. He attributes it to what he calls my “wonderful nutrition.” So I’m way ahead of the curve in terms of when I was able to begin placing a very light amount of weight on that foot, and then begin full weight-bearing. Indoors I can dispense with my walker some of the time. But it’s still a long drawn-out recovery, and very up and down in terms of discomforts, pain, sleep. But overall—very good. I can do a lot more for myself. And tomorrow I’m having my first exercise session in almost 2 months, which will be modified to what I am not yet allowed to do. Really looking forward to getting started!!! My muscles have atrophied on that side, and reversing that is one of my goals. But overall, it’s a wonderful experience to be centered over my right foot now instead of over on the outside, and walking without the constant pain and weakness that were 24/7 for so long. It will take time for fully realizing the benefits, but it’s begun. And I’ll have my life back.
My daughter returns to Paris on Tuesday. I’ll miss her, and her help and her cooking! (But I wish she were a bit more lenient when things don’t meet her standards.) My son comes in on Saturday, with plans to stay as long as we need. Hard to predict at this point what that will be. He’s a big help in some ways, but totally useless in the kitchen!
My husband is calmer than he had been around the time of my surgery. But his cognitive losses are extremely upsetting, and his personality has changed. In terms of his cancer, he just had a 6-month scan Friday, and the report was uploaded to his portal today. No evidence of his cancer—beginning his 5th year of remission now. But there was something new in one lung—a cluster of a few shadowy nodules. No idea what this could be. From what I can gather, it’s typically benign. We’re wondering if it could be a sequela of his bout with covid last May. We have a telesession with his oncologist in the morning, and hopefully he’ll be able to clear up our concerns!
So that’s what’s been happening!
=sheila
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