New Here – Caring for My Husband and Our Young Family

QuietStrength51

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.

jehjeh

https://alzconnected.org/discussion/73458/new-here-caring-for-my-husband-and-our-young-family

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

https://alzconnected.org/discussion/73458/new-here-caring-for-my-husband-and-our-young-family

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

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

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

JeanGayre

https://alzconnected.org/discussion/73458/new-here-caring-for-my-husband-and-our-young-family

I am new as well. I am caring for a husband who is 20 years older than me and I understand the "loss" of your husband as a partner. I have been taking over the household "guy" chores slowly for two years so give yourself time.

Establish your own list of helpers (lawn, car maintenance, repair folks, etc.) slowly and let them know to deal with YOU from now on. Let them know your husband has issues and most repair places will be helpful and kind. You will get a grasp of the household maintenance after a year or so. Be patient but try to be organized and keep names, phone numbers, bills, etc. in a file or somewhere you can get to them. You can do this and you will succeed. Asking for help is a great step and tackle one repair at a time. It may feel overwhelming at times and your partner may even resist your help so just quietly share that they need to explain these repairs to you as well. You sound like you are going to do great!

jca555

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.

Scooterr

Welcome, it's a bitter sweet welcome. We're glad you found us, then again if you needed this forum you're probably going through hell. You do have your hands full dealing with your DH needs, kids at home and trying to hold everything together. Try to take on one problem at a time quietStrength51 as you know the problems and stress will add up, but you got this. My wife was diagnose at the age of 54 and we're 6yr. into this. I too miss her so much, just to here her laugh the way she use too, and the good morning kisses. Now she just walks around in her own world without speaking at all. I have become numb to the ALZ and everything it has done to her and our marriage. Anyway welcome stay strong.

sandwichone123

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.

Timmyd

As a child, then young adult, and beyond: I watched my mother provide end of life care for her ailing parents then my dad. My values about how I deal with my DW ALZ are shaped by those experiences. My mother has been gone for over 10 years but is a bigger influence on my life today more than ever.

"Don't worry that children never listen to you; worry that they are always watching you."

Robert Fulghum

QuietStrength51

Thank you all so much for your kind and thoughtful responses.

I honestly didn’t expect to feel such comfort so quickly, but reading your words has made me feel less alone—something I haven’t felt in a long time. Knowing there are others who understand this journey and are willing to share their experiences means more than I can say.

I may not be able to reply to everyone right away, but please know that I’ve read every comment, and I carry your words with me.

Thank you again. 💜