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Picking up the pieces

Julie Beth
Julie Beth Member Posts: 3
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in Caring For a Spouse or Partner

where do you start when you don’t know how or where to start?


My husband has been my life for 30 years. I just don’t know what to do with myself. I had to place in a MC facility & I just can’t believe it’s been 3 months and I still haven’t left my house except to go visit him everyday.

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  • SDianeL
    SDianeL Member Posts: 967
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    https://alzconnected.org/discussion/70083/picking-up-the-pieces

    I know exactly how you feel. I had to place my husband Lonny in Memory Care 6 months ago due to my cancer diagnosis. Now that I finished treatment, I’m struggling to have a life. Baby steps. I’m putting puzzles together because I don’t think when I’m doing them. Sunday was the first time I ate at a restaurant in a long time. Went with family. Called a cousin who lives nearby to plan a lunch. Planning a trip to see my son and family in another state. Hope to be able to volunteer at the memory care facility when I get stronger. I might take a cruise but don’t want to go alone. Many facilities have Social Workers or support groups. Reach out to them. I miss him so much it hurts but I know he wouldn’t want me to be miserable and waste the rest of my life. Sending love and hugs.

  • Laurie1282
    Laurie1282 Member Posts: 56
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    I will likely have to place my HWA in memory care in a few months. In my quiet times I try to imagine what my life will be like when I am alone. I moved across the country to be closer to my son and his family so my active social life from before is no more. I'm hoping to get more involved at a church, maybe join a book club at the library and use social media to see if there are any bridge clubs or scrapbooking groups that I can join. I'm sure there will be a time of just learning to be "me" again plus lots of visiting at the memory care facility. I refuse to lose myself too in this horrible situation.

  • Karen711
    Karen711 Member Posts: 80
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    https://alzconnected.org/discussion/70083/picking-up-the-pieces
    https://alzconnected.org/discussion/comment/217526#Comment_217526

    Hi Julie Beth - I agree with QBC and M1. Something’s gotta budge. Do what seems like the easiest thing first. I’ve only been a regular visitor here recently, but I will say that reading what others are going through here on this forum has moved me to tears and has helped me to feel so much less alone. Just saying, this is a great first step to adding to your support system!

    Karen

  • M1
    M1 Member Posts: 6,788
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    A few months back i made a document on my computer called "daily tasks.". I would just write down what i managed to do each day. Some days it was an effort just to make coffee. But it helped to try to make myself do even simple things.

  • fmb
    fmb Member Posts: 398
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    edited July 31

    I placed DH in an ALF last November. He is now dying of stage 7 ALZ and congestive heart failure. After being isolated for seven long years while caring for DH at home, I was drowning in grief and had no idea where to start being a normal human being again. I began by challenging myself to accomplish at least one thing a day. At times this has been something as simple as doing a load of laundry. Over the past six months I have come to join a caregiver support group, resume my former volunteer work (with a group of lovely ladies, mostly widows), rejoin my church, frequent the walking trail, and porch sit with neighbors. I often have to remind myself to lift my eyes from the ground and smile and make eye contact with others when I'm out and about, but this has led to many pleasant encounters and some true friendships. I just bought an electric piano (with headphones so I don't torture the neighbors!) and am rediscovering the joy of playing again after 30 years. I resumed making quilts for a children's charity and love working with the nice fabrics and bright colors while I think about the child who will receive the quilt. These activities take me out of my head and my grief. Think about what brought you joy in the past and try doing it again. Do physical activity, it releases endorphins that help raise your mood. And yes, don't be afraid to ask for professional help, whether that be counseling or medication. Think about what you personally need in order to position yourself to live your best life in the future. Your DH would want that for you, and YOU need to want that for you. (((Hugs)))

  • Mint
    Mint Member Posts: 2,746
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    what a beautiful picture

    I hope you’re able to find peace. This journey wears us down sometimes.

  • Julie Beth
    Julie Beth Member Posts: 3
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    https://alzconnected.org/discussion/comment/217534#Comment_217534
    https://alzconnected.org/discussion/comment/217566#Comment_217566

    I am not on any type of social media. I don’t know anybody, I don’t want to answer questions from people that don’t understand and I am fiercely protective of my husband. Does anyone else feel this way?

  • M1
    M1 Member Posts: 6,788
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    I would talk to his MC facility about whether they have a support group or know of a good one. Place to start. You local Alzheimer's association may also know of ones in the area.

    this forum is the closest I come to any social media.

  • Denise1847
    Denise1847 Member Posts: 852
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    Dear Julie Beth,

    Think about what your DH would want for you. I am sure he would tell you to get on with your life and live for both of you. It is critical that you get help through counseling and meds. You are fiercely grieving, and I am so very sorry. I continue to have challenges with depression and lack of motivation. Believe me, I know the feeling and it is a terrible way to go through life. Please fight for your life - it is so precious.

  • Arrowhead
    Arrowhead Member Posts: 361
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    Last October I placed my wife of 47 years in memory care. I visit her for about an hour, five days a week. It’s not easy, but I suggest you start living for yourself. The first thing I did was to get rid of our queen-sized bed and buy myself a twin. Instead of three dressers, I now have one and I use what was her closet space. I never liked the curtains in our room or the front room, so I replaced them with what I wanted. I bought a new pool cue so I could shoot pool and I’m thinking of refurbishing my bowling ball. Moping around the house only wears you down and makes it harder on you when you visit. The more you live for yourself, the more you can live for him.

  • harshedbuzz
    harshedbuzz Member Posts: 4,475
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    @Julie Beth said:

    I am not on any type of social media. I don’t know anybody, I don’t want to answer questions from people that don’t understand and I am fiercely protective of my husband. Does anyone else feel this way?

    You sound a bit like my mother when she was living this. By protective, do you mean that you don't want others to know about your husband's dementia and subsequent placement in a facility? My mom was like this. She was ashamed of dad's dementia, in part because one of the types he had was alcohol-related. And she was ashamed that she'd stayed married to him and because she wasn't able to keep him at home until the end. What helped her was therapy (you may have to shop around for someone who "gets" dementia) and an IRL support group. The latter were her people— there's nothing like spending time with people who are living some version of your life. Pre-COVID, her support meeting was monthly at a local CCRC and met "unofficially" for social lunch monthly.

    HB

  • White Crane
    White Crane Member Posts: 881
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    Hi, Julie Beth, my husband had to go into MC six months ago and I know the loneliness and grief that goes along with that. It helps me to try and accomplish at least one thing during my day. A lot of times that one little thing will lead to another little thing and that's a win. Others have posted some good ideas but I know we each have to find our own way. Keep posting. Ask lots of questions. And feel free to share your feelings and thoughts. We all understand. I wish you the best. Sending a virtual hug. And that was a lovely picture you posted.

    Brenda

  • jfkoc
    jfkoc Member Posts: 3,876
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    It is hard. This whole journey is hard and right now you have great loneliness. It is something to grieve.

    Now is the time to take a baby step or two…somedays just getting to bedtime is enough.

    You are going to be "fine".

    What helped me the most was to be around people who knew nothing about me or my husband.

    Please keep us updated…

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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