Hello to everyone. I have read a lot of informative posts and realize there are so many people in a much worse situation than I am.My husband is so very sick. He is bedridden on hospice. My heart is broken and I cry every day.We have had a wonderful marriage for 53 years. We are both so sad. My daughter lives far away and has been wonderful but she has her own life and has been doing the best for us.My question I guess is how long does it hurt so much. I don't mind washing him, changing his diaper.or anything. I just miss having a partner in life. It came on so suddenly with a small bowel obstruction Then they put in a drainage tube and our world went upside down.For some reason his mind started wandering. Thanks for listening to my story.
I know that's lots of questions. Do you feel that Hospice is enough support right now?
I think the fact all this is happening and you are not only witness to your hubby's debilitation, but caring for him, must be utterly devastating, but your reactions are NORMAL in these circumstances. You are facing the end of life together, and that is horribly sad. I hope that your daughter will be able to do some family leave to be there to support you, or that there are friends. If the work becomes physically more than you can do you may need to consider in facility care.
The wandering of the mind you should discuss with your Hospice folk. As organs begin to fail and shut down this is a normal process, but you need their guidance on how to medicate and what to do during this time.
I am so very sorry.
If you qualify, you can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods. You have the right to change your hospice provider once during each benefit period.
But your question was - How long does it hurt so much?
I too did a lot of hands on care for my dearly beloved for years. The heartache, the deep sadness during that time was gnawing and different from the pain after he left. The sadness was so profound. We were one of those couples that always walked hand in hand. When he died the bottom fell out of my heart and life. It is a huge almost overwhelming thing, but it will ease.
In Caregivers' support group you may meet some great people. It's a long shared journey where friendships may take hold and last beyond this wrenching period of life. I tried a Grief support group but it wasn't for me. Some people go for years. These attachments can be comforting.
After my husband's death a lady from my caregiver's group sent me via email a bunch of little posters of sayings to help grieving people. The one I remember best was a multi-framed illustration of pain after time. Pain was represented as a blob in a jar. That pain was so big it filled that jar, and as time passed the size of the blob didn't change but the jar got bigger. Beneath this illustration the subtext said, the griever's pain never goes away but the way you manage it gets better.
Keeping busy helps. Keeping busy caring for him. Keeping busy with all the paperwork that follows after the care stops. Keeping busy getting your house and life back in order. Later you will become an individual again. The individual he fell in love with, except that you will have good memories and you'll be together again when remembering them.
I'm so very very sorry for the heartache you are going through. How lucky you are to have loved so deeply.
Not that it's not ok to cry together, but you don't want to do that all the time. Take some time to reminisce together about the good times and try and find moments of joy together.
And of course if things get to be too much keeping your husband at home, you can always have him transferred to the hospice home where he will receive 24/7 great care and you can get back to just being his loving wife and not his overwhelmed caregiver.
Medicare will only pay 100% if your husband were to die in the first 7 days of his stay, but you can then opt to pay out of pocket to keep him there until the end.
I have nothing but great things to say about hospice houses as they are always beautiful and peaceful and the care is top notch.
Speak to the hospice social worker, chaplain and whoever else can help you better adjust to your new normal as that is what they are there for.
I wish you the very best as travel this final journey with your husband.
God bless you.
I imagine it remains pretty hard to have your situation.
May The Lord give you peace, comfort and guidance during this new season in life.