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

Hello @casseth02 Nice to e-meet you here. I am so sorry to read of your husband’s medical conditions. The role of caregiver for a loved one while also caring for younger family members is a difficult and challenging one for certain.

I am Scott and I was my wife’s caregiver during her 14+ year battle with brain cancer. The last 14 months she was in home hospice. I am glad you reached out to Connect. Here you will find a group who share experiences and are a strong, nonjudgmental group who offer support, suggestions at times, and have broad shoulders.

In my wife’s case she would frequently be on a ‘plateau’ and then suddenly take a difficult turn for the worse. I never was able to find any pattetn to these times. One of her doctors explained to me the increased sleep pattern was one of the body’s ways to cope with and control outside stimulation when it was too much for her system to process/manage.

I wish you strength as these times are challenging for each family member, but especially when a caregiver must be responsive to younger members’ reactions and their individualized and varying methods of dealing with their grief.

I hope you stay in touch. I found Connect to be especially helpful in combating the isolation, which often accompanies caregiving.

Peace & Strength,

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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

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@casseth02

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

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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.

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@casseth02

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

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Wonderful to read your posts!

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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.

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

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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?

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@amandaburnett

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?

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

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@sandy70yikes

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

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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?

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@colleenyoung

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?

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Forgot to mention it is not getting worse

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@sandy70yikes

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

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Bonjour, j'ai un syndrome de poems depuis 2004, hĂ©las 2 poems ne sont pas identiques, nous avons chacun nos symptĂ´me et nos galères. Perso j'ai perdu l'usage des pieds et des mains, foie rop gros, problème de thyroide, de diabète et un cancer la hanche. 10 ans après la maladie a voulu revenir avec un cancer Ă  la mandibule. Depuis que j'ai le poems j'ai souvent des chose rare comme un parasite d'AmĂ©rique du sud…etc. Maintenant je mache, je n'ai pas rĂ©cupĂ©rer mes releveurs de pieds donc je m'adapte et j'ai rĂ©cupĂ©rer 80% de l'usage de mes mains. Ah oui je suis Belge !

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