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Hospice has been wonderful and they are the ones keeping me afloat right now. Along with my family here at home. My dear hubby stayed home from work today to help me sleep and cope. I haven't had any real sleep since November before Thanksgiving.
Mom continues to defy all odds with her endless energy all night long. Even though she has arthritic knees and can hardly walk she sleeps only one hour intervals. Even under sedation she has such determination. My shoulders, neck and back hurt from all the lifting and my sleep deprived body is ready to drop. When I took on this journey I thought I was doing this for her wellbeing. But now I am thinking this is not the best for her and especially me and my family.
Dementia is a horrible disease and I hate that it has taken away my sweet little mom.
When my husband was first diagnosed with dementia he was up 4 to 9 times a night. I simply could not have coped with that indefinitely. I was a zombie. I knew that if that couldn't be resolved I could not keep him home. Fortunately his doctors came up with a drug solution. If the sedation your mother is on now isn't doing the job, her doctor should be willing to try something else. Or perhaps Hospice can give you some medications to try. This much sleep deprivation is not good for her, either!
Knowing what I know now, I would try hiring someone to care for my loved one during the night.
At the end of his dementia journey my husband again often got up multiple times during the night. His hospital bed was in the same room as my bed, so I took the "night shift" and got up with him. But when the personal care attendant came in the morning I just told her if I'd had a hard night and I let her do the "day shift" why I slept. Our daughter stayed with us for two weeks while he was on hospice care and she lovingly took the day shift as needed.
Here is the absolute bottom line: You cannot function without uninterrupted periods of sound sleep. That has nothing to do with how much you love her or what your intentions are. It is just a biological fact. If you cannot figure out a way to make that happen in your home, it may be necessary to place her somewhere you can spend long periods of time with her and still get your sleep. Does the hospice organization have a Hospice House in your town?
Needing sleep is not a weakness or a character flaw. My heart goes out to you.
I also had a visit today from a home healthcare lady who is setting us up with a respite worker who I can have come in at any time or day. I will recieve 20 hours a month paid for by the state of WA due my mom's low income level. So grateful for some hope. Mom has been pretty quiet today...snoozing off and on in her chair. I just put her to bed, ((keeping fingers crossed)) hoping she stays there tonight.
And I do have a week of Respite coming at the Hospice house the first week of January. That is the light at the end of the tunnel.
I truly appreciate your input...I know that you have definitely been down this road and it helps to have someone to learn from. Mom is nearing the end of her Dementia journey too...I know that I cannot care for her without taking care of myself. So there is some hope for us yet. I just pray it works.