I feel like start running and not look back!

This is why I love coming here so much. I feel guilty having those thoughts too about the future., wondering what life will look like, and sometimes wishing this had more of a definite end. We are about to make a huge deposit on a place that won’t be ready for 2 years. I hope we will be able to move in together and enjoy it but I foresee hiring help and then him having to move to memory care eventually. I’m also 72 and my husband is 77. Thought we would have lots of life together. Never anticipated this. Hugs to all of you as I read this thread. We have to say goodbye to guilt and move on in the moments, but take care of ourselves too.

Were you able to get an appointment with the social worker? I hope so.....

I'm sorry your husband injured himself but I agree, it may be a blessing in disguise. I'm praying you can get past the feelings of guilt once he is settled into someplace new.

Please remember to reach out to loved ones to alleviate some of the loneliness.

I'm sure you have done all that you can to care for him at home. And try not to guilt yourself over how much more you wish you had done. (Speaking from experience with my parents) caregivers can only do so much without compromising our own health. Sending hugs your way! jeh

I agree - sometimes thinking about the future without the 24/7 drain of caregiving is the only way to cope.

Me, too. I cry for the man I loved.

Hello everybody,
Last week we had the appointment with the new neurologist after he reviewed the results of the MRI plus the neurological evaluation, no surprises there : his diagnosis is Alzheimer's.
He told us that he may be a candidate for the LEQEMBI treatment with infusions. He was very clear about the possible side effects which sounded terrifying and also said the rate at what the disease would slow down assuming it works would be only 28%. In order to be sure he’s a candidate he will be having a PET Scan to locate the areas of the brain where the proteins have accumulated and caused the disease.
I wanted to ask here about the experiences other patients have had in using that drug, to me it seems the seriousness of the side effects is definitely out of proportion to the possible positive effect in slowing down the advance.
Plus, the doctor said Medicare covers only 80% of the cost and the rest which we would have to pay for is about $ 25,000 per year! and the treatment goes on for 18 months!
I appreciate your insights.

I think when you are going through diagnosis for strange things you suddenly notice it is a time of emotional freak out and a rush to fix the problems. Once diagnosis is confirmed and reality sets in, love, patience, and acceptance gradually takeover which is almost easier to deal with. And in retrospect many of these symptoms were present years ago but mild and easily ignored as quirks.
Now that reality has set in, I have developed a calm acceptance of our/my life and it seems to help. Not letting all the problems overwhelm you is not easy but taking one at a time is manageable until it is not. No guilt should come into your heart and if it is time to let go of the dream of a cure to learn how to live with reality, you will be correct in whatever you feel you can and should try. If you cannot, then don’t and accept your decision then move on to the next. I wish you all peace of the mind and heart!

I am new to this - well,, my husband was diagnosed with MCI in July 2023 but has declined. (MOCA test score in 2023 was 19; in 2024 was 13). We have first appointment with neurologist later in September. This neurologist is one who can prescribe leqembi.
This article from Forbes magazine I found online indicates that of the $26,500 estimated cost of a year's worth of leqembi infusions, Medicare (and supplemental) will cover $21,500 of it. I'm certainly not taking Forbes magazine as a final authoritative source, but it is a start for further research.
https://www.forbes.com/health/medicare/leqembi-medicare/
But I believe that as the leqembi infusions go on, there are more MRIs and/or PET scans, whatever else... that I would hope Medicare would pay for.
Anyway, that's all I sort of know. Thought I would offer it up.

I don't often have time to catch up here, but this thread really spoke to me. My husband is mid stage Frontal Temporal Dementia with severe aphasia. He has declined rapidly in the last 9 mos. - it's shocking. But that's the nature of the early onset FTD. It progresses rapidly but the person is relatively young and healthy. Like Bruce Willis, one of my husbands' favorite actors, actually. I've been taking care of my husband full time for 3 years now, quit my job, quit volunteering, quit seeing my friends for dinner or a movie, quit travelling to spend the weekend with my grandsons. My husband is going to be 66 in 2 weeks, and had the first signs of aphasia 6 years ago. I am sure there were signs before but he was a quirky engineer and always pretty self absorbed, and it was, I now realize, always a "his way or the highway" relationship. So not surprisingly, he is a really tough guy to care for. He's obnoxious, purposefully uncooperative at times when I really need him to cooperate (think airport) and as he gets more confusion he seems to take it out on me. I have two caregivers that assist 5 mornings a week with showering and grooming, he has lost any sense of personal hygiene and refuses my help. So it thought taking this 6'2", 200 pound uncooperative toddler on a cruise would be a great idea. I did include all our grown kids and spouses, and the two grandsons thinking it would be a great family event. Nope. I was just caregiving, arguing, cajoling, worrying, managing him the whole time. I maybe had an hour with the kids in the pool. But my kids validated me - and we had a group text after - that it is time for their Dad to go to memory care so I can be a friend, not wipe his rear and beg him to let me brush his teeth. Being only 5'2" and 100 pounds doesn't help him take me seriously. He has pushed me and slapped my hands away many many times. Anyway the point is...I have been struggling with this for the last 9 mos. and the guilt, but banish the guilt. I have done my absolute best for 3 years and given up everything important to me, other than him. He isn't getting better, and what is the point of waiting until it get worse? Till he wanders off, really hurts me, touches some little kid at the mall? Tonight at dinner at a local Mexica restaurant he took his straw out of his drink and used it like a spoon to eat refried beans. I am not waiting until it's unbearable. I have a life to live, and he will be safe and cared for and have more activities than I provide as I am paying bills and maintaining his life, our home, etc. I am not letting this disease take out 2 people. Guilt has no place here, I've done all I can and he still needs more. Give yourself the same grace, please. I will visit him and enjoy the fun things, we can walk the dog, go to lunch, I can stay for movie night. But then I will go be me, and he will be respected and cared for and safe. It's going to be hard, I have read posts here that are helping me prepare for the inevitable lonely...but I am already lonely; I am just to tired to notice. Best wishes to you - find a way to get past the guilt and salvage one life. You can do it!

I’m so glad you made the decision to move him into care before things gets worse. Three years of your life dedicated to him seem to me more than enough. It may sound selfish but in my case I don’t think feelings of guilt will be a problem when the time comes, if he lives long enough for the disease to develop to the last stages that is, my worst fear is that we might not have enough money to pay for a place for him to go.
Best wishes to you too!