Hello! I wasn’t sure where to reach out, but I am struggling with the care of both of my parents and at this point anyone who has been through something similar would be of help. My mom (74F) is currently in the hospital for Stage 4/Stage 5 kidney failure, is just starting dialysis, and is in too poor health to get the heart valve replacement required for her to be able to survive anesthesia so she can get a kidney transplant if she can find a donor. She just started dialysis and, while she is much sharper than what my dad is dealing with at the moment, she’s always been very combative, resentful, and nasty towards me in particular. I’m currently living with her as her in-home caregiver (since her issues started first), and as she’s been getting older, the bouts of confusion get worse, and as the subject of her ire over the years, it seems there’s not much I can do to alleviate that part. It’s gotten to the point where she’s told the doctors at the hospital that she’s on her own as far as supportive care goes, and the doctors truly believed that she had no support system at home between me and my sister, who lives in the next town over.
The real issue, and why I am actually posting, is my dad. Right before Covid, we noticed that his behavior was a little off. He had been super meticulous my entire life about his bills, about finances, about his cat, all of it. We noticed that things started slipping here and there, and he always had a reason as to why. But then when Covid hit and no one was coming up to his house (which is about two hours away from me), it got significantly worse. He has a pretty bad mouse infestation even though he does live adjacent to a farm field, it got really bad. He stopped putting trash in trash cans, cooking for himself, anything like that. The only thing taken care of was his cat, but even she began to suffer because the mice were eating more of her food than she was.
Once we found out about what was going on (his neighbors called us), my sister and I went to his house to clean it and were shocked at the state of things. He went into the hospital because he had been in atrial fibrillation for quite some time and needed a pacemaker put in. We noticed his memory was off and there was a lot of confusion. He hadn’t remembered that during this time I took his cat home with me because she couldn’t stay in that house on her own anymore.
This was about two weeks ago and his mental status is not improving much. The doctors think it’s a combination of mini-strokes, the AFib, post-Covid, and poor physical health, which caused some brain shrinkage that is causing the memory issues. I know it’s not quite dementia, but this was the closest topic I could think of that was similar.
I’m struggling to help him and do it in a way where he still feels like he has some semblance of control and dignity. I’m not really sure how to approach the situation but I can see the writing on the wall and I know that he’s going to have to go somewhere besides living on his own at home at this point. The Doctors said it could get better but I don’t see it getting to the point that he could be on his own again. He’s already 74 and there are some days where he’s super lucid but more often than now it’s just, trying to keep up with where his brain is telling him he is. He was convinced he was at my house in the office and had two nurses upstairs (where I was at the time) checking why there was a leak. Like I said, he lives two hours away from where the rest of us live, including his brother and his cousin so we’ve been trying to convince him to move back down for years, but once his wife passed away (now about 16 years ago), he never wanted to leave his house and the area. I just need some way of dealing with this in a way that I’m not going to hurt my dad, especially since I know he won’t remember, but I will. Thanks in advance ☺️
Get everything in place so that they can be cared for in a facility by a professional staff around the clock.
You can then visit with peace of mind as their daughter instead of having to be concerned with managing their care.
Best wishes to you and your family.
I honestly cannot imagine myself moving into the home of a cruel parent, one I didn't get along with at best, and now serving out time--likely one to two decades-- with that person sunk to her worst.
You describe your parents as 74. They may have another two decades each to live. Are you going to serve out your life as enslaved to their care for another two decades?
How old will YOU yourself be then?
Have you your own family and job? Where will that leave you? Likely homeless and jobless with broken physical and mental health.
If you aren't POA already, I would not suggest you be. Nor would I seek guardianship.
I think you are not even getting complete assessment of either parent by a neuro-psyc doctor, so you have no diagnosis for either parent's mental capacity.
You are getting poor medical and social services.
I think that both your parents require placement. Your mother for both physical and mental issues, and your father for self-neglect and what is likely dementia.
I am so sorry. I don't know what the APS services are where you live but I think you badly need them if your parents will not voluntarily move into care. I
I am sorry for your choice to move in with your mother, because once this is done it is difficult then to move out. What with her needs for dialysis three times a week, each taking up the whole of the day, her feeling very weak prior to each dialysis, this is going to be full time work for someone. If you make yourself that "someone" then you life is sufficiently sacrificed on the altar of these two folks. Neither has been cooperative in any care needed.
I don't see how this is doable myself.
I am really sorry. I surely do wish you the best.
I think regards to your mom, go to discharge planning at the hospital and tell them that mom is correct, she has no support at home.
You need to move out. Mom needs facility care.
Who has POA for dad?
I would call APS in his locale and report him as a vulnerable elder who cannot care for himself. Get the hospital social workers involved so that he gets recommended for rehab and then long term care.
Will he qualify for Medicaid?
I assume that it's YOU who is 38. These are your prime working/earning years. Make a career so that you will not be impoverished in your old age.
You need to start talking to your Dad about how you can support or help him as he ages while still caring for your mother. I suggest stressing how much you want to support him and how difficult it will be when Dad lives so far away. YOU need him closer. Often our elders will do something for us before they will do it for themselves. When/if you can talk him into moving, make the move into a AL community. You can get a list of places and info on resources available to help pay for them from your local agency on aging. Visit them and try to find one that matches your Dad. For example, the MC I found for my dad had a porch where he could sit in a rocking chair overlooking a small garden similar to the back porch at his home.
My experience with my extended family has been many adults do very well in AL with just medication management and the option for a shared meal for several years. First, medication management makes sure they take their medicine as prescribed and introduces a human contact to notice problems sooner. Second the AL schedule (and activities) provide a structure and socialization for your LO. And finally, you don't have to worry about your LO. Someone else is making sure they are okay. You can concentrate on visiting and taking them out for lunch/dinner or taking them the stuff they want/need (coffee grounds, magazine, favorite cookies, toothpaste, etc.).
Your mother may be reaching a point where she would benefit from a nursing environment. Not all nursing homes are "bad". I do not recommend the ones using repurposed hospitals; the rooms are too small for long term living. But homes built for long term care with nursing support can aid someone with a bad health episode to recover or live more comfortably with their diminished capacity. You need to ask mom's doctor what her likely and possible outcomes may be. It's possible your mom may never be a candidate for a transplant and you may need to focus on the best dialysis outcome. Some places have some nicer dialysis centers that are fairly pleasant places to spend your time.
There are some hard and difficult choices ahead of you. Do not forget you did not cause your parents' health problems and you are not responsible for healing them or even caring for them full time. I believe we have a responsibility to ASSIST them in finding the care they may NEED, which is not the same as the care they want. Most parents want healthy and happy children. Make sure you do not sacrifice your health and life significantly aiding your parents. I gave up portions of my life to provide time and assistance for a few years to my parents with no regrets but now they have died I am starting my life again; make sure you preserve the ability to do the same.