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My first time to reach out for support

DonnaKohlhase
DonnaKohlhase Member Posts: 1
5 Care Reactions
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in Caring For a Spouse or Partner
Sometimes I feel like I’m a wits end. My mother just dies from Alzheimer’s after 3 years of not recognizing us & my husband has memory loss that is progressively getting worse by the day. I just needed to reach out to someone who may know what’s happening to me
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  • mrahope
    mrahope Member Posts: 550
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    Hello, Donna,

    I'm sure those wiser than I will have suggestions for you, but I do want to say welcome to this little community that no one truly wants to need to be a part of. You sound like you know this journey much better than I did when I began it. All I can offer you for now is a listening ear and the assurance that I, too, have been where you are. As odd as it seems, being flummoxed by all this seems like a rational response, IMHO.

  • Jgirl57
    Jgirl57 Member Posts: 557
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    You ARE at your wits end. Welcome to this wonderful group. Others here who have both lost a loved one AND caring for a loved one may be able to give you guidance how to cope with the ongoing strain and stress . Hang on and keep reading and writing here. Big hugs to you for reaching out to the group.

  • Denise1847
    Denise1847 Member Posts: 873
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    Hi Donna, I know what you are going through and it is so debilitating. My DH is stage 5 and just mostly sits around these days. He doesn't want to go places or do things and he is already on both an antidepressant and anxiety meds. My sister appears to be having cognitive decline and is in poor health so I fear she will be the next victim of this disease.

    Donna, If you can go for walks, exercise, read, socialize (even if only on the phone), go for counseling, talk to your doctor about an antidepressant (it is helping me a bit), maybe these things will help.

  • SDianeL
    SDianeL Member Posts: 1,230
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    Donna, welcome. Sorry you're hear for this reason. You're at the right place for support. We know what's happening to you. So sorry to hear about your Mom. My sister was diagnosed 3-4 years ago and my DH 2 years ago. When the caregiver comes to stay with my DH, I go visit my sweet sister. My DH is Stage 5 going into Late Stage 5. Some days are ok and some are horrible. Have you called the ALZ hotline? They might have some suggestions. Sending a virtual hug.

  • Davegrant
    Davegrant Member Posts: 203
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    Donna,

    Welcome and like the others I read these posts daily, attend support groups, read and take one day at a time and try to maintain my physical and emotional health. Each progression of this disease is an emotional challenge and a problem-solving effort. I say close to those who have already lived this experience as I believe that they are the "experts" in this disease. I live with the idea that I never know what the day will bring so I try to stay flexible. I sometimes take two steps backwards to one step forward. This is a learning experience like none other I ever had. So, I have to keep an open mind.

    Dave

  • sandwichone123
    sandwichone123 Member Posts: 847
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    Donna, welcome! A spouse with dementia is very different from a parent in so many ways. Make sure you have taken care of legal issues as soon as possible--see a CELA or get durable POA and medical POA as soon as possible. Lock down finances before they become an issue.

    Try to build a support network for yourself, as your partner will be less able to support you. For many spouses, the loss of partnership is more difficult than the other difficult issues, so having someone else to discuss decisions with can be very helpful.

  • Caring62
    Caring62 Member Posts: 17
    Fourth Anniversary First Comment
    Member

    Donna,

    Welcome! During my Mom's Alzheimer's journey (now Stage 7) I found this group very helpful and comforting. Many good ideas to help with specific issues. Sometimes just getting another perspective or validation on my experiences were enough. I sent my initial response to you as a direct message a few days ago so you know I am living with the gradual loss of my critical ill DH. Please feel free to reach out to me and I will continue to participate in this discussion.

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 731
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    Donna welcome - that is unbelievably hard, but you will find here that you are not alone. I know there are others here who have walked that journey. I hope you find some comfort here - I definitely have as I navigate my moms disease.

  • Jeanne C.
    Jeanne C. Member Posts: 843
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    Donna - can I just say how unfair this is? We'll be here for you.

  • ghphotog
    ghphotog Member Posts: 691
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    edited September 2023

    No doubt you are at your "wits" end! I've hit my wits end so many times over the years and I'm still here. You think you won't make it many times but you will. Sometimes there aren't any choices but to just hang in there day to day. Take one day, one moment at a time. Get help any way you can either from family, friends, city services such as Senior Affairs that can offer you respite a few hours a day through adult daycare services, this is a great group and you know we've all been there or are still there living it day to day. Try to get good rest while you can, each day is a new day and just face it one day at a time.

  • rbbouley
    rbbouley Member Posts: 1
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    Member
    edited September 2023

    Hello, I am caring for my mother who is 90 years young and has dementia for 13 months now, she has probably had it longer but she was by herself before I realized something was not right so I moved in to my parents place to help. Not sure what stage she is in because her doctors have not really conveyed that info to me, personally I think it's a hit and miss with them they are just monitoring her it seems to me and making sure she is physically ok. She is in total denial and does have sundown syndrome but lately her hallucinations have expanded to the day so at this point I can not leave her alone at all. My dad died 4 years ago, my parents were married 67 years so I have an understanding why she thinks he is still alive, she prepares dinner for him most nights and talks to him quite a bit, but she also is always asking me where the kids are she is looking after, which there are none, and if I have see them, this goes on virtually on a daily basis. Just started to deal with these hallucinations within the last couple months and her doctor is now just starting to recognize it. It's frustrating to say the least and her being totally deaf in her left ear and almost dead in her right does not better the situation. But I would like to say that I was directed to check out this support group which I am so happy to be a part of because up to now I have had none so I am very happy to be here, after reading a lot of the post I am in the right place and appreciate any and all feedback. Thanks

  • SDianeL
    SDianeL Member Posts: 1,230
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    https://alzconnected.org/discussion/comment/182659#Comment_182659

    So sorry you are going through this with your Mom. Do you have a DPOA? If not, you should speak to an attorney. Also get the healthcare one so you can see her chart and speak to her doctor. There are medications that might help with the hallucinations. I would ask her doctor for a referral to a Neurologist. It will help you know how to proceed.

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
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