Young Spousal Caregiver

elizajayne,
Oh my gosh I can't imagine how difficult that must be for you. It breaks my heart. I am so sorry for what you are going through. I am 79 and my husband is 88 and has Alzheimer's and it is so hard on me, but it is not anything like what you are going through at such a young age. Do you have any kind of a support network? We never imagine that we will be in such a troubled position.

Maybe there is someone else on this site who is closer to your age who you could communicate with. It helps to have people to talk to.
Katrina123

Thank you. Yes I do have support but no matter how thoughtful and kind others are there just isn't any way anyone would know the extent of what it's like on the home front unless they experienced themselves! That's why I decided to turn to this forum to see if there was anyone out there who may be in similar circumstances.

My heart is with you. I am a younger spouse/ caregiver for my husband of 39 years. We have a significant age difference and still get judged for it, but for us, it worked. Our kids are raised, but he is in hospice care now for dementia decline and a failing heart. I reached out to a lot of support groups, therapists, hospices, and the like until I found people and companies that worked for us. It took years and lots of advocating to find the resources that work for our paradigm of care and love in this life transition. I am happy to connect privately if you're interested. You and your family will be in my thoughts and prayers.

hello group. I am hoping people may still be on here. I am working with a woman who really needs specific advice for a young spouse. do you have suggestions? I know it has been a while since comments but hoping someone might be out there, thank you, Michele Day

Hello.
Im still here if I can help...

I could not be more happy than to get your post. I’m going to connect you with Jane, who is very very specifically wanting to speak with someone who understands caregiving from the perspective of a young spouse. I will talk to Jane on Tuesday and help her get connected here. This is amazing. I would be so happy to have made this connection.

I’m going through this. We were high school sweethearts & after 16 years apart reconnected and married. We celebrated our first anniversary in the hospital after emergency colon resection & were later told it was stage 4 & he was terminal. That was 3 years ago so I’m still going through it. The uncertainty of how long he has & the inability to plan our future as well as the fact that he’s never going to be who he was before cancer I’m still grieving. Our lives changed overnight & none of my friends understand that or the financial ruin. My vehicle was repossessed last week and we’re struggling to stay in our home now. We were middle class. He can’t work and doesn’t get a retirement pension. He was 42 at diagnosis & I was 38 . I didn’t expect to have to shoulder the weight of all the jobs, work full time, take care of his needs - be the only point of social connection for him, keep house, raise kids and everything else. He is wiped out & could sleep like Rumplestilskin if I’d allow it. The burden of our daily life is paralyzing sometimes. But I wouldn’t trade it for another version of reality without him. You are strong enough to carry this carer role. You get to flip out sometimes. You have feelings to o & they matter. You don’t get carried. You do the carrying. Find a way to feel carried in some way. This makes me feel like I’m not alone. I’m sorry you’re bearing this burden.

elizajayne,
I am sorry for your and your husband's suffering. Friends who are pyschologists have told me that the biggest stress in life is the not knowing. You live in that day to day and kudos to you for toughing it out and caring for this man who absolutely does not want to be in this spot and it probably eats at him all the time.

One other thing I know for sure is that friends or family, no matter how wise and caring, can never understand your situation unless they have experienced it themselves. There is simply no way to understand it other than living it. At first it hurt me but that is just the way it is.

My wife and I got engaged and less than six weeks later, before the wedding, I was in the hospital with a 55 gallon drum of antiotics piped into my veins and could not have felt worse. Crippling fever every day, etc. My wife chose to marry me despite that and she has been the gift from God that keeps me out of despair. You know how important you are to him and your kids but also it is not just your responsibility. And there are many helpful things you can learn from others to help you get to a place of sane equilibrium in your life.

You have not mentioned anything specific that you are struggling with. If you want to share it here or in a Personal Message I will be glad to share what I can and my wife has a whole pile of wisdom from the caregiver side.

God give you strength
Greg
San Diego

PS if you haven't investigated disability from the Social Security Administration I encourage you to get on it immediately. Most likely he will be covered but it can take a year to get it through the system. I have much experience here and would be happy to help save you a great deal of time and many headaches. It is worth it if he qualifies.

Greg

Hello. My heart is overflowing with gratitude at this group’s concern and support. There are so many words of wisdom in these replies and I relate - that alone can give me strength.

My husband is a young 73 and we have been dealing with his cognitive issues for six plus years. Many people think he is fine because they do not see what I do and they have not been here- and I am glad they have not had this experience.

I have received advice over the years about support groups. Mayo’s groups are the only groups for me. Everyone understands and cares.

My advice is to read as many as you can - you will find comments that resonate with you, that give you strength, and the courage to face another day.

I could go on- but my husband is calling.

Peace, love, and prayers to you and your family.