Terrified of what's coming

Posted by mariana739 @mariana739, Mar 24, 2023

Hello,
I'm 67 yrs old my husband is 82, yesterday the neurologist gave us his diagnosis after a series of test my husband took last month: MCD
Although I can't say it was a surprise for me, I had been noticing the signs for the last 3 years, I feel overwhelmed and terrified of the future.
We don't have any children together, he has 2 sons who live far from us so basically I'm the sole caregiver.
From what I've been reading on the Internet all those pills the doctors prescribe "to slow it down" do next to nothing to help. And the possible side effects sound almost as bad as the disease!

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@mariana739

We just had a long talk with our daughter in law who is a practicing Psychiatrist to ask her opinion on the effectiveness of the pills. In a few words her advice is to try them and if the side effects are noted just quit them, of course under medical supervision. But there is not enough evidence as to what is the efficacy.

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You are right; we should try. Appointment coming up this week. Thank you. This group is so wonderful!

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My husband was diagnosed with MCI in 2019. We saw a neurologist and then a geriatrician, just to get a wider perspective. The geriatrician mentioned that there is a patch, Exelon (generic is rivastigmine) that may slow down the progression. It's changed daily. Only side effect might be diarrhea and not all insurance companies cover it. We have spent so many years trying to stay ahead of IBS and other lower GI problems but decided to try it anyway and our insurance does cover it. His intestinal problems have, if anything, improved, and I believe the patch has kept him "here" much longer than if he hadn't taken it. Of course, there's no knowing how the dementia would have proceeded without the patch, but we are happy we took the chance.

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Mariana, my mantra has become “ one day at a time.” As the book of James tells us, “today has troubles enough of its own”. None of us knows what tomorrow holds. I do things for my husband now that I never dreamed I would do; then I thank him for letting me help And I am sincere because he is very resistant to having anyone help with personal things. Often, he thanks me even though minutes before he was pushing me away and yelling. He used to fight me, but medications have helped that a lot. He still resists but doesn’t get so angry.
As the brain changes progress, the current issues change. He no longer asks the same questions repeatedly, but when he did I learned to answer as if it were the first time, because to him it is. Now when he refuses to take meds, I don’t argue. I just lay them on the table, turn away and do something else for a minute or an hour, come back and offer them again and he usually takes them without hesitation. It’s a new request to him. If he ever absolutely will not take it, so be it. Tomorrow is another day. One day at a time. Blessings to you.

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@crankyyankee

My husband was diagnosed with MCI in 2019. We saw a neurologist and then a geriatrician, just to get a wider perspective. The geriatrician mentioned that there is a patch, Exelon (generic is rivastigmine) that may slow down the progression. It's changed daily. Only side effect might be diarrhea and not all insurance companies cover it. We have spent so many years trying to stay ahead of IBS and other lower GI problems but decided to try it anyway and our insurance does cover it. His intestinal problems have, if anything, improved, and I believe the patch has kept him "here" much longer than if he hadn't taken it. Of course, there's no knowing how the dementia would have proceeded without the patch, but we are happy we took the chance.

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Hi,
If u don't mind, how old was he when diagnosed?

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When ever a new medication is suggested, I ask the medical professional about the risks and the benefits. We make the best decisions for our individual situations.
Some meds (memantine and donepizil), worked for a while and the side effects were manageable for us.

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Mariana, every person is different and from what I’ve heard everyone reacts differently to medications for dementia and Alzheimer’s. My husband who is in stage 6-7 according to his neurologist, has had great success with Memantine and an antipsychotic drug. I read every study I could find on the risks (I couldn’t find all that many with enough participants to be meaningful) and spoke with a dear friend who is a retired statistician to help me understand some of the risks which seemed a lot lower to me than what some of the warnings would have me believe. The results far outweigh the risks in my opinion.

I too, am terrified of what is to come if these medications stop working. But as his caregiver I’ve learned to work with the challenges along the way, find ways to make them routine. I have to remember not to waste the good times that we have today worrying about a tomorrow which is unknown. And yes, even with so much memory loss, there are good times.

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@ladytexan

When ever a new medication is suggested, I ask the medical professional about the risks and the benefits. We make the best decisions for our individual situations.
Some meds (memantine and donepizil), worked for a while and the side effects were manageable for us.

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Thank you.

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@immaggiemae

Mariana, every person is different and from what I’ve heard everyone reacts differently to medications for dementia and Alzheimer’s. My husband who is in stage 6-7 according to his neurologist, has had great success with Memantine and an antipsychotic drug. I read every study I could find on the risks (I couldn’t find all that many with enough participants to be meaningful) and spoke with a dear friend who is a retired statistician to help me understand some of the risks which seemed a lot lower to me than what some of the warnings would have me believe. The results far outweigh the risks in my opinion.

I too, am terrified of what is to come if these medications stop working. But as his caregiver I’ve learned to work with the challenges along the way, find ways to make them routine. I have to remember not to waste the good times that we have today worrying about a tomorrow which is unknown. And yes, even with so much memory loss, there are good times.

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Thanks so much for your encouraging words. If you don’t mind me asking, how long has your husband been living with dementia?

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@mariana739

Thanks so much for your encouraging words. If you don’t mind me asking, how long has your husband been living with dementia?

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Mariana, he was diagnosed with MCI in 2018 but had been telling me that he was losing his memory at least a year before that. I thought that it was just normal aging for a long time. Denial I guess.

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