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New Here – Caring for My Husband and Our Young Family

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Hi everyone,
I’m new to the community and just wanted to introduce myself.
I’m 45, and I’ve been caring for my 51-year-old husband who has dementia caused by Primary Progressive Multiple Sclerosis (PPMS). We’ve been together for years, and it’s heartbreaking to see how much this disease has taken from him—and from us. He no longer remembers our wedding, and we haven’t had an intimate or meaningful conversation in over five years. I miss that part of him so much, even though he’s still physically here with me.
We have four children—three of them are still in grade school—and I had to leave my job to care for him full-time. Most days, I just try to keep everything together for the kids while quietly grieving the loss of the man I married.
On top of the emotional weight, I often feel completely lost when it comes to managing all the practical things my husband used to take care of—yard work, home repairs, car maintenance. It’s overwhelming trying to handle it all while also caregiving and parenting.
I don’t have much time or space to connect with people who truly get what this is like, so I’m really grateful to have found this community. I’m hoping to learn from your experiences, share mine, and feel a little less alone.
Thank you for having me.

Comments

  • jehjeh
    jehjeh Member Posts: 145
    100 Comments 100 Care Reactions 25 Insightfuls Reactions 25 Likes
    Member

    I’m sorry you need to be here but glad you found this site. It has helped me immensely in this place I never thought I’d be. My struggles are different from yours, no children, and my DH and I are much older. Sadly, there will likely be a lot of overlap in caring for our loved ones. I’m sure you will find a lot of support here. Blessings, jehjeh

  • charley0419
    charley0419 Member Posts: 477
    100 Likes 100 Care Reactions 100 Comments Second Anniversary
    Member

    welcome this is a great group to vent or ask your questions, my wife diagnosed 3 yrs ago but no where near as bad as many others. Yes it’s a heartbreaking illness as I see many changes in my wife of 56 yrs. But I feel for you and your husband at such a young age. Keep the faith. And talks to a professional on your personal needs

  • SDianeL
    SDianeL Member Posts: 1,803
    500 Insightfuls Reactions 500 Likes 1000 Comments 500 Care Reactions
    Member

    welcome. So sorry about your husbands diagnosis. We understand what you’re going through. Many here have spouses with early onset dementia and some have children at home. Come here often for support or to vent. You are not alone. Hugs.

  • Jgirl57
    Jgirl57 Member Posts: 670
    Fifth Anniversary 250 Likes 500 Comments 25 Insightfuls Reactions
    Member

    Welcome and so very sorry for your situation. Glad you found our forum. You are truly juggling so much and we can offer (((HUGS))).

  • jca555
    jca555 Member Posts: 5
    First Comment 5 Care Reactions
    Member

    so sorry you have had to find this forum. I too am in the same situation you are in. My husband was diagnosed 5 years ago at 51 and me at 46. You are not alone. I have found some peace in trying to just meet him where he’s at. Don’t be afraid to ask people close to you for help. Juggling so much at one time is so hard. I am also so lonely as I too can not have any meaningful conversation. I found therapy a great help, it sometimes is the only time I can get to cry as long and as hard as I want. You need to make sure to find time for yourself. Even if it’s just being in the bathroom for 15 mins alone. Go for a long walk or go for a drive and play your favorite music. Self love and self care is so important. There will still be days and moments that you breakdown, but know that you will get through this.

  • sandwichone123
    sandwichone123 Member Posts: 1,022
    1000 Comments 250 Likes Fourth Anniversary 100 Care Reactions
    Member

    Welcome Quiet! There is much to do, and you will need to figure out how to take care of everyone and everything in the household. There are good people here who will help you figure out many aspects of care. Don't overlook the helpline https://www.alz.org/help-support/resources/helpline as they can provide some local resources as well as national. This board provides the voices of experience, but is more limited in knowing local resources.

    The one thing I do want to suggest is that you protect your children. Alzheimer's can become more and more about your dh, and the kids can feel like they matter less. In addition, often someone with Alzheimer's can be annoyed by noise or other childhood behaviors, can be reminded of someone else or for some other reason may target one of the children. Please be aware, and remember that the children should be protected above all. They deserve a safe space to grow.

  • Russinator
    Russinator Member Posts: 259
    100 Likes 100 Comments Second Anniversary 25 Care Reactions
    Member

    ((HUGS))

  • Karen711
    Karen711 Member Posts: 151
    100 Comments 25 Insightfuls Reactions 25 Likes 25 Care Reactions
    Member

    Welcome QuietStrength51💜

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