Caregiving for my husband

theresad864741 · ‎06-05-2018

Hi, Im Theresa and I'm new here, this site was recommended to me to help me reach out to other caregivers. I have to say its been rough and not easy. It started out with me being good with helping in all things I could. I even quit my job to care for him full time. My husband has MS and I have to dress, bathe, help him go to the restroom. He drops things on a regular basis but can feed himself for the most part, he does tend to choke at times. He's a big man, 6' 4 in. and 300 lbs, he's also in a wheelchair. I have felt so much burn out this last year and I feel like I care for a child. I'm not sure where I can go for support in person. Any advice out there for me would be greatly appreciated.

agoyer · ‎07-31-2018

Hi Theresa (@theresad864741),

I'm so sorry you are struggling so - I can see why you'd be feeling depleted and you really do need support! Here are some suggestions:

Contact your local Area Agency on Aging (AAA) and ask about caregiver support - they will either run caregiver support groups or they will know who does and be able to refer you locally. They can also give you info about other supports that will help you care for your husband, including respite programs to give you a break. Find your local AAA by going to the Eldercare Locator at www.eldercare.acl.gov and put in your zip code or city/state.
Contact the National Multiple Sclerosis Society and check out their Resources and Support section - there is a chat function there you can ask questions etc, and a lot of other great supports including their Find Support links.

I hope that these connections will be helpful to you and I really encourage you to stay active here in the AARP Online Caregiving Community - post your questions anytime! I'm so sorry this took so long for me to respond, my Dad was in his last day when you posted it. I cared for him for more than a decade...he had Alzheimers. So I truly am sending you empathetic hugs. 🙂

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

JaneCares · ‎06-20-2018

@theresad864741 wrote:
Hi, Im Theresa and I'm new here, this site was recommended to me to help me reach out to other caregivers. I have to say its been rough and not easy. It started out with me being good with helping in all things I could. I even quit my job to care for him full time. My husband has MS and I have to dress, bathe, help him go to the restroom. He drops things on a regular basis but can feed himself for the most part, he does tend to choke at times. He's a big man, 6' 4 in. and 300 lbs, he's also in a wheelchair. I have felt so much burn out this last year and I feel like I care for a child. I'm not sure where I can go for support in person. Any advice out there for me would be greatly appreciated.

Hey, Theresa, I'm sorry you've not received a response yet. Ack. I've been ridiculously busy, but no excuse. Time for you to expand the caregiving circle around your husband. Too much on you!

Do you two have children who can help? Presumably grown? Even if they live far away, they can visit and do practical things like clean out the garage, do a deep clean of the bathroom, whatever needs doing. It takes a village.

If no children, and even if there ARE helpful children, are there cousins? Does he have siblings? Again, everyone can do SOMETHING.

Most importantly, i think, or at least AS important, is that you and your husband have a 'come to jesus' moment about finances. Time to look everything over, and see when he's eligible for medicaid/ long term care. If you both are too wealthy for this federal program, then it's time to figure out how to hire some help. "In sickness and in health" does not mean you have to do all of his care yourself. Even a once a week aide, for 20 bucks an hour, would give him a thorough bath (even a bucket bath) and shave. Sometimes, a professional is a great gift, and you can pick up some tips. Taking care of a big man like that could hurt your back if you are not using the techniques that aides and nurses have developed for a reason.

Can you delegate any chores to, say, a high schooler who needs community service hours? Can you hire a kid on the block to mow the lawn? Hire a proper, licensed housecleaner to do a deep clean on the bathroom and kitchen, monthly? What can you outsource?

Please tell us what specifically is a challenge. There's lots of wisdom here from folks who've been through this.

My partner has MS, too. She's pretty independent still, but you are experiencing my future. I so appreciate your writing, and please write some more.

All the best,

Jane