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

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,