I’m. Just. So. Damn. Tired.
Now, at 92, she is very frail, and often doesn’t remember how to stand or sit. She can communicate sometimes. She can feed herself but eats little.
Lately, she has been getting up without assistance and has fallen. Now I sleep with her to keep her in bed, but I’m afraid to sleep too soundly. During the day I set a timer and check on her (in bed) every 15 minutes.
I’m so tired and I worry that I won’t be able to keep this up. I have a little help from hospice. She doesn’t qualify for long term care.
Can anyone offer suggestions for rest, self care, distraction or just how to keep putting one foot in front of the other?
What do you do when it becomes too much?
Thanks xox
Comments
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I would suggest you talk to your hospice provider about whether there is an inpatient hospice facility available to you. To be honest, it doesn't sound like she has long. Would it be worth it to cover a period of care private pay? Are you sure about her not qualifying? Don't mean to sound questioning, but push comes to shove, almost everyone can qualify eventually. Perhaps it would be money well spent, is all I'm saying. I'm sure you're exhausted.
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Are you saying she doesn’t medically qualify for a skilled nursing facility( a nursing home)? Are you saying that sye doesn’t qualify for Institutional Medicaid to pay for a skilled nursing facility? Or are you saying she can’t afford private pay at a memory care facility?
I suggest you contact hospice. Dementia patient don’t have to be in the last six months of life to qualify for hospice and they can provide extra help. Some have in patient facilities. Medicare ( not Medicaid) pays for hospice.
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So sorry that you’re struggling with this. In addition to the other good suggestions here, see if Hospice might also offer respite care - either in your home or a temporary stay at a facility. Not really a solution but at least some temporary relief. Wishing you a good night’s sleep.
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I hope the suggestions above can provide some relief for you. Sometimes 24/7 caregiving can be so all consuming we don't have time or energy to explore other options. It's hard to see anything else when so many tasks and responsibilities take fill every minute.
Your mother is blessed to have you.
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SusanSD, Welcome to this place yet sorry for the reason. Can you hire in some part time help a few hours or days a week. The only way I was able to keep mom at home was to get away while paid caregivers were here. I also used all that hospice had to offer to get an additional hour here and there with the music therapist, the chaplain, the respite volunteer and the CNA. Mom loved the extra company.
I hope you can find some relief soon, you must take care of you too.
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Calling the alzheimers association 24/7 care consultants at 800.272.3900 may provide a way to put one foot in front of the other.
Additionally, they will send you resources specific to where you live to find in home help.
Hope you find a way to get real rest.
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Re falling out of bed, can you use a railing like we did with toddlers?
For knowing whether he has gotten up out of bed, I bought a pad that sounds alarm, if he steps on the floor by his bed. Also available are pads that sound an alarm if someone leaves the bed.
You are a wonderful daughter. What a great comfort to your mom. She would want you to take care of yourself. Hope you can figure out ways to do that.
I was surprised at how much a relief it was for me to set our house alarm to sound if a door to the outside is opened. He has not wandered the neighborhood by himself since then I started using it. I thought he would object, but he does not.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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