Support Group for Those of Us Living With Mild Dementia

Did anyone get a pet scan? I also in early stage have a voice difficulty problem which caused me to see the Neurologist actually, so she did a Beta Amyloid blood test and said because of that I have dementia along with MCI, then had another cognitive test at just age related dementia. Anyone else have similar symptom? Also wanted me to get on infusion, which I’m against.

@janieohrn76 I was approved and all set to start the infusions. Two days before my first scheduled one, I decided to look up the warnings on this Lequembi. When I read them, I immediately canceled and told the doctor no way.
I have mild dementia. The doctor’s PA was actually smiling and almost giddy when he realized that I could qualify for the drug.
There was no discussion other than, let’s hurry up and get you on this drug.

It’s brand new, fast-tracked through the FDA approval process, and Medicare quickly decided to pay 80% of the annual cost of $26,500.00!
Frankly, I am VERY SUSPICIOUS when the doctor acts like a kid in a candy store when a patient with mild dementia appears in their office, and they qualify for Lequembi.
Lequembi is only 27% effective, for slowing the disease while you take it. At that rate, I am not willing to take the risks.

@SusanEllen66, that is a good tip. It helps when people use the @username of the person they are addressing.

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Welcome, @heidiruth. Just by posting here, you've joined the group along with @jackchap and @SusanEllen66 so far.

I'm sorry to hear about your fall and ongoing stiffness and pain. Are you still doing physiotherapy to help?

Hi, my husband, has been diagnosed with MCI in memory loss. His executive functioning is superior. But I am feeling alone dealing with his forgetfulness, repeating of stories, and simple repetitive tactical things that I teach him over and over, like how to retrieve a Venmo, for example. Some days I'm better than other days, but it seems to be progressing faster than I had thought, and I feel overwhelmed. I'm supporting the household, have 5 children and grandchildren and I also am primary care giver to my mother in assisted living with dimentia. How do I cope with all of this. I feel hopeless some days and am getting depressed myself. My friends don't know and my children do know but they have their own lives.

I'm really sorry that you're going through such a difficult time.

This statement of yours concerns me a little, though:
"...my children do know but they have their own lives."

That is no doubt true, but their eyes need to be opened to what's going on.
You had your own life once, didn't you? You set it aside to do what's needed. The children need to step up and do *something* to help.

You haven't posted a photo of yourself, but I bet you don't wear a cape and an outfit with a big "S" in front. You're mortal, and from the sound of it, you're pushing yourself way, way past your safe capacity.

I think you've got to summon all possible resources around you, and that includes your children.

And if they get mad at you for insisting they help, how are you any worse off?

Forgive my blunt comment, but the thought of your kids parked in front of a TV while you're running yourself ragged is pretty upsetting, to be honest.

Thank you for your words of support, Scott. My children are older, 2 live out of state, but the other 3 do take the time to see their dad, have breakfast with him, conversations and he is even visiting one of the children for 6 days out of state, so I'm certain that she will get an eye-full. I didn't mean to make it sound like they don't bother, it's just that they don't live with us and they have their own jobs, children to raise. In fact they are all great kids.

My feeling alone is because I am home all day alone with him so I'm dealing with the day-to-day activities and MCI behaviors, and it's exhausting and sad at the same time. We have been married for 27 years and have had a very good marriage. It's worrisome to me as to what is going to happen to him and myself. He is a young 71 year old man. Very bright, well-read, fit and we eat healthy.

Do you know of a support group in Rockland/Westchester/NJ counties that helps support spouses with MCI and in similar situations? I feel I need to do this. I've been dealing with his MCI for 3 or 4 years and it's progressing. He does have a good friend that he sees for lunch and has no problem driving or getting lost on the roads. . But he does lose his phone, glasses, wallet, keys, sunglasses, hat, on and off and we have to search to find them (sometimes for hours). Sometimes we don't. I gave him a neck purse to wear, which he did for a while. Thank you.

Thank you for your words of support, Scott. My children are older, 2 live out of state, but the other 3 do take the time to see their dad, have breakfast with him, conversations and he is even visiting one of the children for 6 days out of state, so I'm certain that she will get an eye-full. I didn't mean to make it sound like they don't bother, it's just that they don't live with us and they have their own jobs, children to raise. In fact they are all great kids.

My feeling alone is because I am home all day alone with him so I'm dealing with the day-to-day activities and MCI behaviors, and it's exhausting and sad at the same time. We have been married for 27 years and have had a very good marriage. It's worrisome to me as to what is going to happen to him and myself. He is a young 71 year old man. Very bright, well-read, fit and we eat healthy.

Do you know of a support group in Rockland/Westchester/NJ counties that helps support spouses with MCI and in similar situations? I feel I need to do this. I've been dealing with his MCI for 3 or 4 years and it's progressing. He does have a good friend that he sees for lunch and has no problem driving or getting lost on the roads. . But he does lose his phone, glasses, wallet, keys, sunglasses, hat, on and off and we have to search to find them (sometimes for hours). Sometimes we don't. I gave him a neck purse to wear, which he did for a while. Thank you.

I, too am in a similar situation as you are with my husband. Our days sound similar. I am also my 90 year old mother’s caregiver and spend a lot of time taking her where she needs to go. My children are also busy with work and their children. Most days run pretty smoothly, but there are those that don’t. The days when he can’t find a thing that he had in his hand five minutes before…give him enough time to think about it and he usually finds it. It might take an hour or a day or two. He gets frustrated, but we try to laugh about it. Like your husband, mine is still driving and is in fact a very good driver. He only drives around our city. He is fine in familiar areas. Our family doctor says he should quit, our neurologist says as long as I think he is capable then he should be fine. He told me I am the best one to know when he should quit as I am the one with him all the time. My husband is not ready to quit yet, but he has agreed to let me make the determination when it is time.
Like you, I too get tired of looking for things, explaining things over and over, having to handle all telephone communications, finances, but it is what it is. His problem seems to be more in communication, finding the right words to express his thoughts and of course short term memory. He works hard around the house and in the yards and is still very capable of keeping up our property which includes bush hogging on a tractor. We don’t watch much TV anymore as he just doesn’t seem interested, but he does enjoy watching videos on his phone every night. I do miss conversations that cover anything new or regarding future plans. His mind just doesn’t go there. He’s is great with the past and I try to help him stay on top of the present. Sometimes I do feel discouraged. He’s only 68 and we have been on this journey for a couple of years now. We had plans for travel and rving that we have had to let go. We will work around it. We are going on an Alaskan cruise with our daughter this summer something he has always wanted to do, but he never talks about it and is not involved in the planning because it’s in the future and he hasn’t gotten there yet. As frustrating as this whole thing is we both signed up for better or worse 43 years ago and I know if the roles were reversed he would be here for me so between my husband and mother’s care I just push on leaning heavily on my faith when I am weary and discouraged and I read a lot of books. I do have days when I get mad at the whole situation, I am human. I just wanted you to know you are not alone. There are a lot of us spouses dealing with this. There’s not a lot of support groups to help so I am thankful for Mayo Connect as it has helped me in many ways even more so than the doctors have. They treat the diagnosis the best they can, but we are the ones our loved are counting on to help them make it through each and everyday life. I hope it helps you to know we are all in this together. ❤️