Husband with POEMS Syndrome

Posted by casseth02 @casseth02, May 29, 2017

Hi, I am caregiver for my 53 year old husband who has had Plasmacytoma Cancer twice and POEMS Syndrome. He has been beddridden for 2 years and is now considered a quadreplygic because of the nerves dying in his body which causes muscle paralysis. He has now gotten to where he sleeps all day and all night barely waking. He chose to go hospice roughly a year ago. With these changes happening so drastically I am afraid of where he is in the process. We have 2 teens that are as worried as myself. The changes in him has happened so quikly. One day he was awake and alert the next day not. His hospice nurse and aid have been to our home as remembers nothing. If there is any guidance it would be appreciated

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sandy70yikes | @sandy70yikes | Nov 10, 2020

In reply to @colleenyoung "Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into..." + (show)

Forgot to mention it is not getting worse

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2020

In reply to @sandy70yikes "My husband has poems. It was diagnosed 3 years ago at Mayo Rochester. He seems to..." + (show)

Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into this discussion who have experience with POEMS syndrome like @gratefulone @craigkopcho @bburleson1 and @casseth02

Sandy, can you describe more what you mean that your husband's recovery has plateaued? He was making progress and now it's at a standstill, but not getting worse?

sandy70yikes | @sandy70yikes | Nov 8, 2020

In reply to @amandaa "Hi @sandy70yikes, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to..." + (show)

My husband has poems. It was diagnosed 3 years ago at Mayo Rochester. He seems to have plateaued in his recovery.

Amanda Burnett | @amandaa | Nov 7, 2020

Hi @sandy70yikes, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to a conversation about POEMS so you can connect with other people with this diagnoses. Are you a caregiver or someone with POEMS?

sandy70yikes | @sandy70yikes | Nov 7, 2020

I would like to hear from patients with POEMS and their neurological recovery. The extent of recovery and how long it took.

Scott, Volunteer Mentor | @IndianaScott | May 30, 2017

Thank you @mojo1965 and @sallysue I find sharing my experiences and feelings from my caregiving years as a tribute to how hard my wife fought her war and a touch of therapy for me.

mojo1965 | @mojo1965 | May 30, 2017

Love your posts @IndianaScott!

sallysue | @sallysue | May 29, 2017

In reply to @casseth02 "How did you find the strength to keep going? I feel like I am loosing it..." + (show)

Wonderful to read your posts!

Scott, Volunteer Mentor | @IndianaScott | May 29, 2017

In reply to @casseth02 "How did you find the strength to keep going? I feel like I am loosing it..." + (show)

Hi again @casseth02 Thanks for your response and question. Forgive me for my bluntness, but you, as I was, are in a new living system, which is not 'normal' in any sense of the word. Topsy-turvy perhaps -- crazy maybe -- a house of cards certainly --funny at times then intensely sad, but never 'normal'.

I got by using the AA mantra of 'one day at a time'. I often wondered if I could find the strength to answer the bell in the morning, but believed I certainly could finish the one day I was in. This helped me then stare down the next day as best I could.

I also believe deeply Love is an incredible emotion and it can power the best and the least of us far more than we ever think it can. In my case I know it was only love that got me through a day for my wife and our children more than once.

Please remember Superman and Superwoman are only in the comics, so a caregiver can only do their daily best. Each day the definition of 'best' can change.

I often came up short in my caregiving efforts so I kept an old pillow on our sofa, which many nights received my wrath as I punched it for an outlet. One night when I was especially angry with myself I tore a hole in it and found myself exhausted, but spending over three hours picking feathers off everthing in sight! So a word to the wise --if you do this use a foam pillow 🙂

Be kind to yourself!

My best strength to you.

casseth02 | @casseth02 | May 29, 2017

How did you find the strength to keep going? I feel like I am loosing it but I can't because of the kids. I am trying to keep it all as normal as possible but it is getting so har