I was diagnosed with mild dementia earlier this year. Now I'm fearful of what's to come.

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I was diagnosed with mild dementia earlier this year. Now after having a PET Scan I was told I have positive amyloid plaques inside my brain. My husband and I are in a research program under my Doctor's supervision, and one of the ladies in the program called me and told me the results of the PET Scan. From what she told me, it's in the middle of my brain. I have an appt. to go to my Dr. on Oct. 2nd and I have a couple of questions to ask them. I don't know if it will come from the inside out or what. I already have plaques on the outside of my brain and now the inside. My Moma and 5 or 6 of her siblings passed away of complications from Alzheimer's, so I know what to expect. I'm 62 years young. I know Alzheimer's doesn't care how old you are. It doesn't care about anything. I know God is with me all of the time, but the problem is, I've seen what it does, and I don't know if I'm strong enough to go through this, knowing my husband wants to take care of me. He told me the last thing that I would have to worry about was going into a Nursing Home because the only place I'm going to die is in his arms. As sweet as that is, and I would want that to happen, I don't think he knows how hard it is to take care of someone with Alzheimer's. I took care of my Moma full time for 1 year. Really 2 years but she would go to her sisters house on the weekends and then come back home during the week. Now that sister is in a nursing home with Alzheimer's. She just turned 96 this past July. She's the oldest sibling and it's just her and one other sister left out of 9 siblings. Seeing everything that I've seen, I'm scared to death of the unknown!!!

19 Comments

Dear Babydoll62,

Thank you for sharing your story with us. Sending you love and hugs. I think its only natural to have these fears about the future. I wonder if it might help to speak with a counsellor or join a support group. Your husband sounds like a wonderful man and maybe he would join you. There is a lot to think about and hopefully with some planning it can alleviate some of your fears.
Thank you so much for caring enough to respond cdnreader. Right now we are in the research program at my Doctor's office, but I understand what you mean. That's a wonderful idea. We have sold our house because my husbands job has moved (and he isn't ready to retire). He's been with them for 29 years and we're moving not far from where he will be working. I told him that I wanted to hurry and move so I can get use to my surroundings because I know what it's like for people with Alzheimer's, especially at night when they're sundowning. I remember it well from when my sweet Moma did it night after night looking for her parents that had died 40 years before. She thought they were in the other room. It broke my heart. But as soon as we get moved and settled, we will find a support group through my Neurology Doctor. Thank you for your advice it's very much appreciated.
Baby doll, keep posting here! You have tremendous knowledge and insight into the path that dementia can take.

Might you consider write a very specific advance directive at this time, detailing what you do and don't want in therm ofvcsre?
Babydoll: I am so sorry to hear about your diagnosis of Alzheimer's but you seem to have a plan and that will help...and you are fortunate enough to have a spouse who is willing to take care of you...he sounds like a good guy.   Maybe joining a support group along with your husband would be a great idea.

I wish you the best in your journey...May God keep you in his care..   Just accept each day as it comes..do not fear......fear is only wasted time you will not get back...spend it doing something you enjoy!
You are a very brave person. My heart goes out to you.

You are the source of knowledge to Alz because of your family history. You get it. But you're worried your husband won't. I know this reads a little scary: How about the two of you visit an Alz facility for your husband to see what he is potentially up against. Later, the two of you come up with a plan for best case, workable case and worst case scenarios.

BarbBrooklyn, I will definitely keep posting here. Not everyday yet, as we have sold our house and we have got to move by Nov. 1st. So a lot of stress all the way around for just a little while. Yes I am going to write a very detailed specific directive about the things that I want as far as my health, my future, my funeral and my belongings. I've already spoken about these things verbally to my husband, but at the time of my Journey going Home, he won't be thinking about these things and I don't want him to have a lot of extra burdens on him. I want a DNR and when I told my husband this, he just looked at me like he wasn't sure he could go through with that. But I'm going to make sure through paper work that it will be taken care of before my mind gets bad. Thank you so very much for answering my comment. Like I said, I will definitely stay in touch with you and everybody else.
KellyJ17, Thank you so very much for being so very concerned. You sound like a very sweet person. And you are so right, my husband is a good guy, one of the best. You have said one of the best things I have heard in a very long time about fear. Fear is only wasted time you will not get back....spent it doing something you enjoy! I hope that I never forget that sentence. I always tell people that are having problems "yagottahavefaith"! Now I have something else I can tell people---Thanks to you!!! Thank you so much for helping to lift me up. Have a very nice night.
careisgiving: Thank you so very much. I have seen so much Alzheimer's in my life time, and it's been in the last 10 years. I don't know if I'm brave, I just do what I know I need to do. You hit the nail on the head about my husband. I am so afraid that he just doesn't understand it completely. He worked while I took care of Moma. Yes he came to visit her after he got off of work for a few hours, but he didn't see or hear everything. And I'm going to try my best to get him to go to a facility where there's Alzheimer's patients. It will be really hard for me to do because it will bring back memories of me and Moma, but if it will help give my husband a better idea of what the future holds, I'll do it for him. Thank you so much for your advice. My Moma always said that 2 heads are better than one and she was always right. Have a nice night.
Babydoll62, I hate this for you, as I, too, have it in my family a lot, and have begun to wonder about my own forgetfulness lately.... So... heard about the "Bredesen Protocol", which claims to be a great new help (cure?) for Alz; and looked it up - very interesting..... God bless you and try not to worry - it doesn't help.
Hi Babydoll62. So impressed by you and your frankness and sincerity. Wishing you and your husband the best . I know this has nothing to do with Alzheimer's but a very close friend of mine had 3 occurances  where his skull was fractured 2 minor, ( his mom dropped him as a baby and he fractured his skull, a few years later, he fell off of his bike and did it again. The third was in his 20's. Major head trauma , car accident. He some how survived and did well. My point ( sorry if I'm rambling). Is he does cross word puzzles and word games since the accident. Some thing to keep his brain challenged. Could this activity possibly slow the progression ? Wishing you the best

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