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Husband with POEMS Syndrome
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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@casseth02 Am so sorry you are experiencing this and your husband is dying.
The kids are teens. This isn't "normal". You and the kids are going through a "new normal" that is temporary, and then when your spouse passes you all will yet again have to adjust to another "new" normal.
It appears you are expecting a lot of yourself because of the kids. As Scott put it so well: you are not Superwoman.
Am sure the hospice social workers, et al, can recommend a grief counseling source for all of you. OR you may be able to find a church who offers such for you all, in separate groups or counselors.
You sound like a really good Mom, but we cannot protect our children from the hard facts of life, please give yourself a break.