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Any ideas? Advice please!!

Posted by lilorfnannie (My Page) on
Wed, Jan 28, 09 at 17:21

I have a problem. My mother is disabled, she is confined to an electric wheelchair, she has severe short-term memory problems, very bad arthritis, she's very obese due to the prednisone, and I don't know what else. Her doctors that are managing her various conditions are agreeing that she needs a weight-loss surgery because she needs to lose weight to improve all her other health issues- but she can't do it being in the wheelchair and with the other issues.

She first told me this over a year ago, and has told me all this time that she's waiting on the doctor, or waiting on Medicare, or waiting on who-knows-what petty official to arrange things. She still doesn't know when or where the surgery will take place. She is firmly under the impression that she can't have the surgery in Hawaii where she is because there is no Medicare-approved facility but she has to do it in California (which is probably the case) but she thinks that she will have to go there, stay in a hotel at her own cost, and either have me come or hire an aid to help her with the recovery time- 24 hour care for one week- all in a hotel, all out of her (my) pocket!! I told her, won't Medicare pay for the recovery time?? She insists that it won't, "Medicare doesn't make sense." So I called Medicare- and in 20 minutes found out that all she has to do is the doctor transfers her to a Medicare-approved hospital in California (there are lots & lots), she goes to the hospital, there is a deductible, she has the surgery, stays for the recovery, end of story. After a year, I find out she has it all wrong! And when I try to tell her she is wrong, she gets offended and refuses to answer my calls!

I mean- she seems to have a history of not being her own advocate- she's like the biggest victim in the world, she's got a permanent "kick me" sign on her back. She was supposed to have a helper-dog, but that has taken what, some two years I think. The crazy list goes on- and on- and on- to infinity! But she's perfectly convinced that she's right and she's handling everything just fine, that suffering builds character, that God is ordaining her suffering, that she can't say anything to the powers that be lest they bury her file in the the Round File and she never gets any help at all. It's all insane- I can stand to listen to her for about 30 seconds before I go stark-staring mad, and then she uses that as an excuse to say I don't want to hear important changes in what's going on in her life, so that's why she didn't tell me the surgery she had said was scheduled is now NOT scheduled- etc!

So I'm getting really worried about her decision-making abilities. The biggest problem is- she's an only child, and I'm an only child. It's just her and I, and she has no family or even friends over there. She's in Hawaii- and I'm in NEW ENGLAND. I'm married with kids and can't just pop over there! Not that it would do any good- she's furious at me for butting in (we DON'T get along well, never have) and now she won't even answer my phone calls. I'd have to pay airfare, hotelfare, babysitting/dogcare for the kids/dog back home, everything- it would all go on credit cards, if we could even do it- I don't even know if I could do it- and she wouldn't talk to me when I got there.

I called the "Elderly Affairs Division" in Hawaii but they can't/won't help- they only deal with 60+ year olds and she is 58. But she is disabled, can't even get around without an electric wheelchair, and I think she's doing this slow spiral around the drain here. One of these days I'm afraid her landlord is going to go knock on the door to collect the rent and either find her on the floor unable to get up for three days or dead. But it sounds like she's not quite incompetent enough to be declared "Incompetent" and there's nothing anyone can do. Is this right?!? Are there other options that I don't know about?? Thank you!


Follow-Up Postings:

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RE: Any ideas? Advice please!!

I forgot to add- she has "environmental allergies"- severe reactions to even copier fumes, for example- and there's no way on God's green earth she'd ever want to come live here. Her arthritis couldn't take the cold, her allergies couldn't handle the worse air quality nor could they handle the airplane trip over here (she would end up very, very sick & have to take oxygen the whole way,) and she would utterly resent and not allow me to take any part in managing her affairs anyway. I don't even know who her doctors are, and she'd never allow me to speak to them anyways. Like I said- we don't get along.


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RE: Any ideas? Advice please!!

Sometimes the only thing a person can do in a situation like this is wait and see. You have to put your children first. It's easy to say, "Don't let her worry you." But that's about all you can do. Her memory will probably get much worse. And nothing you or anyone can do will help that.

My opinion....and it's not worth a dab... is that even if she had the surgery, she sounds as if she is the type that wouldn't change her life style enough for it to be sucessful. Even with the surgery, it would take a couple of years for it to make much difference in her health. And maybe it wouldn't make any difference. Allergies and arthritis really don't improve much.

I think that unknowingly, she has chosen a path that is all downhill for her. The diminished short term memory is a real problem when there are heath issues. She will forget important things like when and if she took her medication. She'll need some sort of supervision as in an Assisted Living facility. But she won't admit that, and you can't make her.

You have a real problem....or rather, SHE has a real problem. The distance from you makes it almost impossible for you to do anything except hope for the best.

Don't worry about trying to do more right now. I am sure that her doctors will step in and take charge when and if she reaches a point when something MUST be done. They are used to situations where the patient's family is not around to take charge.


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RE: Any ideas? Advice please!!

I have been thinking about a response to this problem, and I'm glad that agnespuffin started this out.

Honestly? I don't think that you can/should get involved. It hurts terribly to see someone we love make self-destructive decisions, or not take actions for their own good. I have a brother like that. But I cannot help him. For all sorts of reasons, but mainly because he doesn't want to help himself. And your mother does not want your help. And that's not reading-between-the-lines, either. She's been very direct with you.

Yes, the landlord might find her one day. I worry the same about my brother. But you cannot save her from herself.

It's a sticky problem. On this forum, we talk about taking care of those who cannot care for themselves. True. But your mother is no where near the state where most people step in and take action for the safety/care of the person.

I have a client who is trying to dea with her very abusive nasty mother, who is 96. She has never ever had a good relationship with her mother. Mother is quite healthy and mentally acute. But mother went to a SNF after OD'ing in Tylenol to get her daughter's attention. The daughter is getting over her own guilt problems, and letting mother stay in the nursing home. She's trying to just walk away from her mother.

That's not always a bad thing, to keep your distance and talk to someone near you, a counselor or minister, about your own feelings of not being able to help. But you are not going to be able to solve your mother's problems, I fear.


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RE: Any ideas? Advice please!!

Susshipup & Agnespuffin have given you good advice. As difficult as it may be, you must remind yourself that these are your mother's problems. Her health sounds precarious and her mental condition sounds equally poor. The distance between you is a huge problem too. You simply cannot, all by yourself, solve her problems. She doesn't want or appreciate your help.

You need to leave her care up to the doctors who treat her. If they really thought the surgery was a necessity, they would have moved on it. But it sounds like they haven't intervened yet.

Sometimes our loved ones create a horrible situation for themselves because of their own stubbornness. There is just nothing you can do about it.

Eventually, when she comes of age, the state and/or county department of aging might be able to provide some oversight & some services for her. If she is disabled, she might be able to get some services now. But even that is not a perfect answer. Many elderlies refuse help from in-home health aides, Meals-on-Wheels, etc. The one thing you don't want to do is abandon your family to try to care for someone who doesn't want your help.


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RE: Any ideas? Advice please!!

Perhaps you could contact Social Services in her county and have them make an evaluation.
Sounds like you have enough on your plate at home to keep you there. Your mom will call you when she needs you...or not. It isn't something you can change.


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RE: Any ideas? Advice please!!

I'm not sure I completely agree with what everyone else is saying. If your mother is having short term memory problems then maybe it is not that she is purposefully not telling you things, maybe she just does not remember, and may very well not be able to take care of things or understand enough to ask the right questions, not everyone is medically inclined. And it sounds like she is very lonely as well, don't sound like she has many people that come and see her by the statement your afraid her landlord may find her dead and her have been there for awhile. You live very far away and circumstances prevent you being there much, but it sounds like she does not have many friends etc... that stop by. I wonder if there is not like government apartments there for the elderly where she pays by her income and there are strictly older people in that apartment complex so that she has people to interact with and check on her, that could very well ease your worry and I sense alot of worry beyond the fact you and her don't get along, that does not mean you don't love her. Loneliness breeds depression and I can tell you it makes people terribly bitter. She may be embarrassed by her lack of memory often times even like in the beginning stages of dementia people know they are forgetting it is embarrassing and they lash out at people that bring up the idea and try to help because of embarrassment, slowly letting go of your freedom as you knew it whether it be because of mental or health issues is very hard. She also may be saying you have to come and take care of her at the hotel because "insurance" won't pay because that is her way of saying she misses you and is scared and needs you, she may be very proud and would never come out and just say I need your help because if the doctors say it then she don't have to feel like she is burdening you. You may not get along and I am not sure the circumstances but I know you only have one mom and when she is gone there is no bringing her back. I have the most stubborn sarcastic father that fabricates stories and I could go on and on. But I let him know I love him and I just want him to be my dad first, and my mom had a severe stoke in her early 50's and he takes care of her and there has been alot of riff, so I know where your coming from. I also know the lord says honor your mother and father, and I am trying so hard and I know it's tough. But maybe you and your mom need to discuss the things that have made your relationship go sour, for you and for her, because when she is gone you certainly can never fix it. You guys definately need open communication with her being so far away and not really able to come to you and you not able to move as well. That's just my opinion.


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