History: My father will be 90 on 12/19, he has advanced dementia that started 10 + years ago. About 15 months ago we had to place dad in an AL facility due to his increasing dementia, since that time has deteriorated both physically and psychologically, on Nov 11th I received a call from the AL facility that he had fallen. Long story short he ended up with a serious right hip fracture, a minor left hip fracture and a broken tailbone (all of which the ER missed) and wasn’t found for over 2 weeks after being in the hospital and rehab (much longer story) Due to dad’s physical condition the doctors recommended not to do surgery due to his overall condition (advanced dementia, 2 heart blockages, and a BMI of under 18). His doctor recommended hospice, unable to return to the AL facility due to needing 24/7 care, my brother felt that he and his wife could take care of dad with the help of hospice at their home.
Fast forward 2 weeks and it quickly became apparent that they cannot care for dad, he gets up multiple times per night (even with 2 broken hips and wanders (dad is very out of it at night and doesn’t even know he’s getting up, he is able to craw over the bed rails) but during the day he seems to be more lucid at times and during the day he can’t hold any of his weight and requires full assistance to move from bed to the chair or bathroom (FYI, hospice has him in pain meds 24x7). It’s as if he can’t feel pain at night when he is very out of it.
I have 3 siblings and we have all agreed that we have to move dad into a 24x7 care facility at this point. We took dad to several places to let him see them and he gets very upset at us for having him moved to a facility, we try to explain it to him but the dementia is advanced and he does not remember the discussions by the next day and we have to start over and explain it again, it’s a never ending cycle.
We all feel guilty for having to do this but there doesn’t appear to be another solution.
We are moving dad on Monday to the facility and I know it’s going to be horrible, but he has declined so much I don’t think we have a choice. With the dementia and physical condition he has basically zero quality of life at this point. I don’t want him to suffer, and I pray he passes peacefully in his sleep. I know that sounds horrible but we don’t know what else to do.
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If, in 2 weeks, family is exhausted with the care, it's not going to get better.
At this point, there's nothing to feel guilt about. None of you made dad get older, fall or have dementia. Guilt is not the appropriate emotion. Sadness, grief..shoot, even anger at the unfairness of life, but certainly not guilt.
Dad may live quite a lot longer. If he's cared for in home, I can GUARANTEE there will be depressed, exhausted family and even angry family b/c caring for someone in your home or theirs is by nature depressing and exhausting.
Throw dementia in there and you may as well be caring for a total stranger.
You may want to spend sometime with someone at the facility and learn a better way to communicate with a person who is essentially mentally checked out. Repeating yourself ad nauseum is pointless.
Good Luck with the move and stay positive. You are doing the right thing.
This was my 100-yr old Aunt (a healthy women except for her advanced dementia) who escaped her in-home bed fortress in the middle of the night and fell, breaking her hip. No surgery due to advanced dementia and non-compliance for everything (no IVs, no pain meds, nothing). She went into rehab to try to get her to be able to pivot on that leg, and there she continued to get out of bed trying to climb out the (non-opening) window. I was in the process of finding appropriate placement in a facility for her and she technically qualified for MC but not LTC since she was still mobile. So: no LTC, therefore no Medicaid (in FL). The day before one facility was coming to assess her she (thankfully) passed, possibly due to a clot.
I feel the pain of your situation. As long as he is mobile there's not much you can do except to address his sleep dysfunction and/or anxiety with meds and find a good, reputable facility that YOU are happy with. Please do not bother to "show" him places -- he can't process it and it just ramps up his anxiety. You yourself say he has advanced dementia... you must make the decision for him. You can create a "therapeutic fib" scenario for him that the facility will also gladly participate in, that will ease him into any new residence.
In her response to you on this thread Lealonnie1 did not mention that her Mother fell approximately 90+ times over the 3 years she was in the facility. You must prepare yourselves that this *might* be what lies ahead for you Dad. Or, like my Aunt, the Lord will mercifully take him before he transitions. I pray this for your Dad.
Sometimes the only solution is the least bad option. I wish you peace in your heart that you are doing the right things, the best things, for your Dad.
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You didn't cause all this and it is already proven that both you and the rest of your family cannot fix it.
Guilt implies responsibility. None of you are responsible for this.
The better G-word is grief, so please know words matter very much, and it's important to your own well being that you use them.
There is terrible grief involved in standing helpless witness to what our parents face at the ends of their lives.
You are correct that there's little here that can now make any difference for your father other than trying to keep him as safe and out of pain until his inevitable death. And putting him in care is something you have done because you MUST. Unless and until you become gods you have no omnipotence in this matter, and cannot humanly do this. I spent my career as an RN and I LOVED it but if it taught me one thing it was that I could no way do 24/7 care for ANYONE, let alone someone I loved who was dependent upon me.
I wish you luck. I know that you know that putting Dad in hospice care has no consigned him to death. Life has done that, and he has had a good long one of those. I am so sorry that the end of life has brought him so many woes and so much pain.
I wish you all the very best.
Wishing you peace as you continue on your caregiving journey. Sending a few hugs your way today.
Blessings to you and your family.
My mother lived in Memory Care Assisted Living for just under 3 years and had hospice at the end of her life. For the last year, I prayed daily for God to take her out of her misery, while she cried for her mama and her siblings who were all deceased. The horror of dementia nobody should ever have to witness or suffer.
Praying your dad's suffering is short, that you don't blame yourself for his age or infirmity, and that God grants you Grace and mercy throughout this difficult process.
You did your best.