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Overwhelmed

Hi everyone, I'm new to the group. I'm the caregiver to my husband who was diagnosed 4 years ago with MCI. Since then we have seen a neurologist and he is now at early onset Alzheimers. I'm feeling overwhelmed with things at this point. I just need to know that things will be OK.

Comments

  • shark_guy
    shark_guy Member Posts: 9
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    Member
    edited December 2023

    Bugj,

    The “normal” OK has probably left the building. But I have gotten excellent feedback here from folks who have been on this road for a while so use this forum to help yourself and to help others, communicating with others is very useful I find. The single best comment I have received is this: It is just as important to take care of yourself as it is to take care of your spouse, your life and wellbeing is just as valuable, don’t neglect yourself.

    Bill_2001 just posted two sets of excellent information, take a look at those.

    https://alzconnected.org/discussion/67581/helpful-suggestions-eight-years-in-part-2#latest

    All the best in your journey.

  • Kibbee
    Kibbee Member Posts: 229
    Fourth Anniversary 100 Comments 25 Insightfuls Reactions 25 Care Reactions
    Member

    @Bugj My mom was caregiver for my dad who had a neurological condition. She told me that in all the visits to his doctors no one ever asked how she was doing. That really bothered her. He’s been gone for many years but she still mentions that from time to time.

  • Mimi50
    Mimi50 Member Posts: 139
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    I was overwhelmed to when my husband was diagnosed with VD year ago. All the planning for the future. POA and stuff is a lot to think about.

  • BugJ.
    BugJ. Member Posts: 7
    5 Care Reactions First Comment
    Member

    Well we made it through to the NEW YEAR. My DH said to me that in the past week he feels like there has been a decline in his memory. That things just aren't clicking. I watched him trying to dial a phone number, and he couldn't do it. It's like the thoughts couldn't get from his brain to his finger tips. That was so painful for me see.

    My next question is, we are thinking about moving out to the My family farm. If anyone has moved a loved one, how did it go, how did they adjust? Or is it just a bad idea?

  • Jeanne C.
    Jeanne C. Member Posts: 828
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    Member

    Hello - my husband and I moved right before his diagnosis. Honestly, the move was rough and highlighted many symptoms (long story). My recommendation is to move to where you need to be. Will you have more support after the move? Will it be better for you? As your husband progresses, it's going to be hard regardless of where you live. Try to put yourself in the best possible place and situation so that you can care for your husband AND yourself. Sending you positivity.

    I also wanted to share that I set up an area in the groups section for new caregivers. I've been gathering resources and helpful posts that were useful to me as I started on this journey.

    https://alzconnected.org/group/32-new-caregiver-help

  • Ed1937
    Ed1937 Member Posts: 5,090
    Sixth Anniversary 2500 Comments 500 Likes 250 Care Reactions
    Member

    Bugj, welcome to the forum. Sorry you need it, but it's the best.

    I'd just like to say that if he's stage 4/5, you can have many good memories to make. It's not all terrible, but you have to focus on the good things you still have, and forget about the bad. Do that as much as possible, and it will help.

    Now on to moving........some people have moved quite a distance to be close to family so they can get a lot of help. Sometimes this works, but most of the time people are disappointed with what the reality is. The help they expected usually does not pan out the way they thought.

    And the effects it might have on a pwd is really not known until the move is made. You really should ask yourself what you expect from a move. There are a lot of things to consider, including the resources available at the potential new location. Quality medical care is high on the list to consider. Would this be a place you would want to spend the rest of your life when your caregiving duties are done? And there are many, many other things to consider.

  • Mimi50
    Mimi50 Member Posts: 139
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    Member

    Not taking care of my own health. Since my husband was diagnosed. Is having the consequences that everyone warned me about.

  • BugJ.
    BugJ. Member Posts: 7
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    Member

    After being gone for a while I've finally found a quiet day to catch up. I'll fill everyone in on what's going on with my DH. We have noticed some more slight decline. About 5 months ago he was tested with the MoCA test and scored 17/30, two weeks ago he was tested again and scored 13/30. I know he went from mild impairment to moderate impairment. But what does that mean? We are moving the end of March, and he said that he was excited for that move. That surprised me.

    We see the neurologist on March , hopefully he shed more light on what's to come.

  • rplourde50
    rplourde50 Member Posts: 39
    10 Comments First Anniversary 5 Care Reactions 5 Insightfuls Reactions
    Member

    I can relate. I am always wondering if I'm doing the right thing or the wrong thing.

  • RickM
    RickM Member Posts: 115
    Seventh Anniversary 100 Care Reactions 100 Comments 25 Likes
    Member

    I used to wonder that too until I discovered that no matter what choice I made I was screwed. The best choice is the one that makes YOU less screwed and the one that you can more easily live with. The choice that will make you and your spouse most comfortable as a whole.

    Hang out here. Join a support group. Share stories. Learn about the experiences others have had. Then trust your gut. You’ll know what to do. But remember…you’ll still be…???

  • AZGuy
    AZGuy Member Posts: 11
    10 Comments First Anniversary
    Member

    Hi BugJ.

    As you mentioned, no one will ever know what it feels like to watch your LO slip into their own world and there is absolutely nothing you can do.

    I've always been a fix-it person. Anything goes wrong around the house, automotive, electronics, etc., I can usually fix or figure it out. With Dementia-NOPE! There is nothing I can do for my DW of 40 years. I feel like I'm letting her down.

    Do you know if you're doing the right thing caring for a LO? I wonder that every day. I have to rely on the feedback of her Dr's. When the visit summaries read "the tests look good" or "she looks healthy and well cared for", I take that as I might be doing something right. And, you have to rely on what you think is right.

    I can't say things will get better. But, when your LO has good days-cherish them. That's may be the closest you get to see them as they were. Those good days get few and far between.

    I certainly wish you the best. There is a lot of good information here and a lot of very helpful people who are willing to share their knowledge.

  • Pietas61
    Pietas61 Member Posts: 20
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  • Pietas61
    Pietas61 Member Posts: 20
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    This blog has been helpful for me to understand what I am up against. Early mod diagnosis but I can see it now eating away past 8 years or so. My wife is only 53. Pet can, mri, cat SCAN and diagnosis confirm Alzheimer’s stage 3 or so. So beautiful inside and out. Professional model, radiologist, 3 college degrees. Most beautiful woman in the world to me.





  • Lovzred
    Lovzred Member Posts: 8
    5 Care Reactions 5 Likes First Comment
    Member

    Bugj,

    Hello! I am new to the group also as of last week. My DH was diagnosed with MCI 5 years ago and last summer diagnosed with dementia. Talk about falling into the deep end; I was treading water - so tired -during Fall & Winter. I am on a learning curve from this group. I have a strong faith, but I figured no sense in trying to reinvent the wheel - others have been through this. I needed practical knowledge, common sense methods. (and my youngest daughter suggested to me find a support group- lol.)

    I have already been able to put into practice some tidbits & found I had actually did a few correctly before I joined the group. Lol. I tell myself, "baby steps. deep breaths." Today was a rough day for me, but not the worse I have had. I did not split hairs with what was already wrong with the day at noon, and then at 5 p.m. or at 9. I will have to fix it tomorrow anyway. So, I actually watched "Rock the Block" decor channel and took some deep breaths.

    Knowing that there is a group & a place to go for questions or know there are others that struggle, that have been there, that have insight, etc. makes me feel better and I am thankful for the forum.

    We can get through this. - Jerrianne

  • Pinkscarf
    Pinkscarf Member Posts: 13
    Fourth Anniversary 10 Comments 5 Care Reactions
    Member

    Hello. You do the best you can do, and do it with love. And that's the right thing. No one else's opinions matter. This might go on for several years. It has taken me a very long time to feel that I did the best I could with the knowledge and resources I had. Always, always, I give him all my love and that keeps me going.

  • RonnieE1/
    RonnieE1/ Member Posts: 1
    First Comment
    Member

    Hello Love, I'm the caregiver to my wife, who was diagnosed with ALZ last year. Would really like to have a Support group local I can join. It would be Grand to speak to folks going through the same issues. I live in the Dallas Fort Worth area. Peace be with you…💐

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more