dad sick from Alzheimers, kidney failure taking dialysis, etc. feeling helpless
My dad suffers from a long list of illnesses: diabetes, heart disease, has had heart attacks, strokes, kidney failure for which he goes to regular dialysis, and Alzheimer’s disease. He is only 65 years old but we believe he has had Alzheimer’s for over 5 years now. Lately his Alzheimer’s in combination of dialysis has been getting extremely bad and rapidly advancing. He has lost the ability to function on his own for a while now, he is delusional (and because of his delusions he falls under a lot of emotional stress to point where he is crying out loud like a baby), has lost most of his common sense, he cannot control his bladder at times, unable to speak properly, restless (unless we give him a strong sleeping pill) and lately he has been getting episodes of extreme Catatonia where he completely freezes in a specific state for several minutes (his eyes open, hands drawn out, this sometimes happens when he is screaming at someone and just pauses like that).
It’s extremely difficult to bare and cope; not just witnessing my father go through this but also witnessing my mother’s anxiety being his prime caretaker and family’s emotional state over this. As a family we are there for him and we try cope with it but lately it’s become a real life nightmare, no one has peace day or night, we can’t sleep properly at night because my dad wonders away and screams my mom’s name (really loud and frightening) and is needing constant attention day or night. My poor mother being his prime caregiver is also the recipient to most of his abuses/aggression due to his emotional state. One of the main delusional episodes he is suffering from is the belief that my mom had an affair with his cousin and due to this belief; he is in a state of constant stress and agitation so he verbally abuses her and tries to attack her. What’s worse is that no one can control him and we don’t want to use force because he is so fragile. He goes in and out of mood swings. When he is bad, he refuse to take his medications because he thinks its poison; he refuses to go the hospital as well.
We haven’t taken him to a long term care home because at first we thought it was a not a good place for him but after when things got worse, we couldn’t due to a long waiting list. I just got off the phone with our healthcare rep. to see if we can take him to a short stay rest pit center for a few days (these places are designed for families who have dealt with a lot to rest for a few days by having them take care of the sick person) so that my mom and family can have a badly needed break at least for a few days , turns out they don’t want to take him, she is making excuses and saying he should see a doctor first and then we will see, blah blah blah. No one wants to take him.
If he stops dialysis he will pass away within days but we really don’t know what HE wants and we could never make a decision to end his life, I think it would be very hard to live with if we decided this, knowing that we killed our father and whether or not that was the right choice. The quality of his life is definitely very poor but what if he doesn’t want to die even if he is going through this? Who are we do decide if he lives or dies? His illnesses has become so bad and we don’t know what to do , he is suffering, my mom is suffering and I fear for her own health and my family is suffering. I don’t usually post anything on the internet but after getting no help from medical people including kidney societies, Alzheimer’s society and his general healthcare workers, we have never felt more helpless/hopeless. I have read articles and done research but don’t know anymore... its easy for medical staff/doctors to suggest stopping dialysis and killing him off (like they have) but I can never trust their judgment because so many times they don’t really care about a senior patient with inclining health, they care more about dealing with a “difficult” person and freeing up space. Please help!
You could try writing to pharmaceutical companies, they may sponsor the medications and dialysis. Alternatively, sometimes participation in clinical trials will engage those personnel to get medications/therapy for you. Your treating physician can also send recommendation letters to pharmaceutical companies. If all the above are not helping then ask your doctor to give the relevant letters for long term home.
Hi. I hope things have gotten better since your March post.
I am going through a similar situation. The medical professionals have provided little help for me as well.
I have 2 suggestions for you:
1. Have your father moved to a nursing home and hire private caregivers to watch over him while he's there. I had to do this when my dad went into a nursing home temporarily.
2. Hire private caregivers to come into your home. I am doing this now for my dad. They take him to dialysis, cook, clean and feed him.
Unfortunately, my Mom passed away trying to care for my Dad on her own. I'm an only child and lived 16 hours away by car so I wasn't much help. I live with the guilt of not doing more, even thought I did my best.
I wish you the best. May the peace of the Lord be with you.
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