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Husband with POEMS Syndrome

Caregivers | Last Active: Jan 17 9:06pm | Replies (24)

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@shaylarod

Hi @casseth02, your post resonated with me. My husband is 45 years old. He was diagnosed with POEMS Syndrome earlier this year. It has rapidly taken over our lives. Prior to being diagnosed with Diabetes in the past couple of years, he was a healthy man. Last October he started to have health issues. In April of this year, he had numbness in his feet. By June he could barely walk. He had a plasma exchange in July and an Autologous Stem Cell Transplant at the beginning of August. By the time he left the hospital he had numbness in his fingers. Today, he is at a rehab facility with very little control of his extremities.
We have two young boys (3 and 7) and he is scheduled to come home this week. While I am happy to have him home, after almost 2 months... I am scared of not being able to do enough for him. How will I shower him (home limitations)? Will we be able to get him to/from Dr. appts safely? I went to rehab last week to learn and practice getting him to the car and what not. It was hard but we did it... even if he may have gotten some bruises. Ultimately, they recommended I get a lower car... at least for appointments.
I honestly am just so overwhelmed with thoughts that I don't know where to begin... Any advice?

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Replies to "Hi @casseth02, your post resonated with me. My husband is 45 years old. He was diagnosed..."

@shaylarod Welcome to Mayo Clinic Connect and I’m so glad that you found us. You really have a difficult task on your hands. Let’s see if I can help and I’ll also find some members who can help you.
1. Get an appointment with the social worker at the rehab facility as soon as possible. Ask if she is able to delay his discharge for 1-2 weeks while you learn what you need and while the house is set up. Also ask if there are social workers in the community that you can make contact with.
2. Ask if the rehab facility has a ‘home inspection’ team who can come out and evaluate your home for safety. Also ask if they have training sessions for you to learn all you need to safely move your husband. Do you have the right equipment for him. The facility should be able to help with all his discharge plans, including if you will need assistance.
3. Community help: if your friends and family want to help, meals, errand, and child care would be most helpful. If home changes do need to be made, maybe a friend could start a Go Fund Me request for you.
I’m sorry, I think I’ve just overwhelmed you! Please ask more questions when you think of them.
Do you have any help right now?