My mother was previously at home. I have 2 homes on 1 property, very close together, and she lived there by herself with us checking on her several times a day.
Her health began to deteriorate shortly after my father died 10 years ago. She would go to the doctor but then refuse to follow directions, take medications, have recommended procedures, etc. She was finally forced into having at least one medical procedure last year because her health became so bad, it was either have the procedure or be in tremendous pain.
She was placed on home health at that time, and they would have re-certified her, but she she started refusing to comply with their treatments/recommendations, so she was discharged for noncompliance.
She then began to fall frequently. She would just sit in her recliner all day long, only getting up to feed herself or go to the bathroom. She became deconditioned. Again, she was placed on home health with home PT, an aide for bathing, and nursing to help with meds. She made it through the first period, and they recertified her for a second, but again she began to refuse to comply and was discharged.
In November 2013, she had a major stroke and fell, injuring her right arm. She was sent to rehab and then sent to skilled nursing in a nursing home. She should have received skilled services until mid March, but because she refused (again) to comply with therapy or rehab, she was discharged from skilled and placed on long-term care.
She cannot walk. She cannot feed herself very well because of the injury to her arm. Her trunk muscles cannot hold up her body, and she is somewhat like a rag doll. She is an extreme fall risk and has fallen several times, even with all the precautions. She is incontinent of both stool and urine and frequently soils herself, requiring very strict cleanliness precautions because since she refuses to move, she is at huge risk for bed sores. She has an advanced directive/living will and has explicitly stated that she does not want a feeding tube or any heroic measures.
I am giving all this background to get to the topic.
I try to stop by and see her every day after work. She is extremely angry and verbally abusive to not only me but the staff. She does not want to get out of bed, especially to shower or sit up in her wheelchair. She has hit, kicked, and pulled the hair of at least one aide.
She has refused meds. They brought in a psych to see her, and she was offered antidepressants, which she refused.
She curses me when I see her. She at first demands and then pleads to go home. It is just me. I am her only child. She has siblings, but not only are they worthless, their health is almost as bad as hers. There is absolutely no way I could care for her at home because she requires 24/7 care. She has told me that I am "going to pay" for what I have done to her and that she hopes I die in a nursing home.
My 16-year-old son often goes with me to visit but lately has refused to see her because she is so verbally abusive.
The facility is now in the process of documenting her behavior to determine if anything can be done. Their staff doctor requires specific documentation before something can be done.
Me and several others have tried to gently explain things to her, and she is just convinced that someone is keeping her there and that if we sold just let her go home, she would be better.
What do you say? What do you do? It is to the point that I don't want to see her, but on the other hand if it were me in a nursing home, I would at least want some company. What have others done in this situation?
The nurse has said that they must have documentation of her behaviors to even start her on a medication for her behaviors and anxieties. They can't just randomly start her on a med without documenting why. It is so strange because you hear so much about people who have no visitors at a nursing home. No one ever says it is because their loved one curses them, calls them names, and says they hate them.
My elderly sister was speaking so loudly to our 95 YO mother, yesterday, that the director of the NH, had to come in and check on them.
You are not the only one.
Now, all that is left to do is continue to visit albeit difficult to remind her she is loved.....and yes, drugs!
The other side is freeing yourself, too. You DO NOT HAVE TO visit all the time. Think about it -- is there any other context in our society where we would tell people "you should allow yourself to be abused on a regular basis"? Your son's reaction is a healthy one. Do you want to train him to believe that "good people allow themselves to get hurt over and over”? No you don’t. Imagine that you are now in your nineties and you are lashing out – do you want him to suffer terribly at your hands? No you don’t.
Ask yourself what you really want to model for your kid(s). It will help you decide what to do AS your mom’s adult child. Maybe what you want to model is something like this:
(1) we’re doing the best we can to see to it that grandma is safe, medically cared for, and content;
(2) she IS safe, medically cared for, but contentment-wise she’s in a bad way, we haven’t got that bit figured out yet and will keep trying;
(3) meantime for our own sakes, we also do the best we can not to take what she is saying literally or take her behavior personally;
(4) we have to look after ourselves too, so we don’t have to go any more often than we can take.
It was making me ill, I had a blackout and my hair was falling out. I changed my phone number (she thinks it was playing up so I got rid of it) and only visit every couple of weeks now. I leave the phone off the hook from late afternoon until the next morning so no-one can bother me. Of course I make sure her bills are paid and ensure she has all she needs. It's been a while and I'm starting to feel a bit better but after so many years of extreme stress it's a long road to recovery.
I also remember the things she said before she had the stroke such as, "I hate this house and have half a mind to just burn it down, " even though it was my house and the things she considered catastrophic were minor, like a light being out in a closet. She would also continuously say, "Just check me into a nursing home! Just check me into a nursing home!" She said this to anyone who would listen, so thankfully I have those people to back me up that she did indeed say it. I would tell her repeatedly that the best thing would be for her to stay in her home as long as possible with home health, etc., but she would not listen. In her mind, it was as if a nursing home was Club Med. I also told her that likely if she ever was in a nursing home that she would not be able to come home because of her physical condition. All of that has come true. Every. Single. Thing. That I have told her would happen has happened.
This past summer (2013), a social worker from home health came out, and we applied for a provider for Mom through DHS to help her with cooking and cleaning, groceries, etc. We wrote all over the application to NOT call Mom but to call me. Instead, they ignored it, called Mom and said they would need to go over her financial information. She told them it was none of their d**n business, hung up on them, and so it was, of course, denied. Back to square one. That was when home health ended and she started falling again soon after that. Home health even wrote a "carefully worded" letter to her doctor because they were concerned about her difficulty with ADLs and refusal of help.
If I even thought there was a remote chance that she would allow caregivers in her home and not tell them to leave, I would maybe consider bringing her home. However, I have no doubt in my mind that she would tell them to leave, accuse them of stealing or whatever, and then we would be stuck.
I work 3 jobs (2 of which are home based, which I did so that I could be near her), and there would be absolutely no way I could take care of her and still pay bills if she were to come home.
However, telling her this means nothing. I know that she thinks the last place she was (home) she felt well, so if she went back she would also feel well, which we all know is not true, BUT I also know without a doubt that she would tell them to leave, even though she promises and swears now that she wouldn't. She would tell them to leave, and we would be screwed.
I am just voicing that in writing because it has been circling in my head. I appreciate all the reinforcement, advice, and common sense that have been in response. Thank you all so much for reinforcing what I already knew in my heart. I appreciate you all. Thank you.
My husband suffers from Solvent Dementia. Your mom always remembers who you are?? So many questions I have....is your mom suffering from Alzheimer's, Dementia?? We could talk privately if you wish....
Some people will never be happy with anything. Someone else's happiness is not your responsibility it is theirs.
In the past, when I had therapy, I was told that she likely had a borderline personality disorder and was highly narcissistic, so much of what you have said is right on the nose.
I've learned to show up about an hour before lunch, with a raft of things to do/discuss/show her (newspaper, I bring my cat sometimes, I have neighborhood stories, new "skies" for her walker that I have to fit, new clothing, whatever) to keep her occupied until she starts to get anxious about getting her favorite seat for lunch. Diversion, diversion, diversion. When she asks if I'm staying for lunch, I alternate between "no, I didn't sign up for lunch today" and "I don't see any extra room for me here, I'll just go home and eat."
I also don't go every day, I go maybe 2-3 times a week. I had been going once a week, which was too infrequent as she kept thinking I'd just abandoned her, then I went to every other day but that was too frequent as not enough had happened since our last visit. Every third day or so seems to be just about right.
Good luck. You ARE doing the right thing, just as I'm doing the right thing, as badly as I may feel about it...
When your Mommy child decides to have a temper tantrum in the store, are you able to pick her up and wisk her outside before she disrupts everything in sight?
Oh what happened when you turned 5? Did you not start the journey to going to school? I bet those teachers were mean, weren't they? Did your Mommy take you out of school and just let you have your way? From the age of 5 to 18 you were in school and frankly, I hated school! But my Mommy said I was safe there and needed to learn so I could function in the real world.
Honey, if you want to take care of your Mother at home, I think that is great! But please don't compare it to having a baby. Not even close. Having a baby at age 20 or so, don't even come close to taking care of an elderly parent when you are in your sixties.