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Old 06-17-2013, 07:41 PM
 
Location: Michaux State Forest
1,274 posts, read 2,659,880 times
Reputation: 1390

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I have lived with my mother, acting as her sole caregiver for years. I am her only child. Even though she has dementia and is often paranoid, has auditory hallucinations, very poor memory, falls incessantly, and admits she can't live alone, she expects me to be her 24/7 caregiver. She won't allow anyone in the house because according to her she is fine and thiz is just a normal part of aging. She never wanted me to call 911 all the times she fell eventhough I've had several back surgeries and can't get her up. She is also very verbally abusive but then she always has been.
This was the situation until a few weeks ago when I finally called 911. She was admitted to the hospital, observed for several days and then discharged to a rehab facility for another week. After being observed, ect, her doctors declared that she had severe dementia and could not stay at home unsupervised. I agreed as she almost drowned in our canal out back and had started fires at home.
Here is the problem. I found her a beautiful, safe Assisted Living private home and she has now been there a week. She HATES it, and does nothing but demand to go home. I do have durable power of attorney and am also her healthcare surrogate and am only doing what was advised by the doctors, social workers, and P.A.s that saw her. I feel so destroyed inside eventhough I do feel keeping her at home is an impossibility as it is dangerous. Now she is not always out of it and does often seem lucid until you realize most of what she just told you is untruthful. How do I deal with her constant demands to go home when she does not believe she even has dementia? Thank you so much for listening to me, I appreciate any feedback.
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Old 06-17-2013, 07:46 PM
 
Location: The Crocheted Cauldron
33,637 posts, read 31,000,456 times
Reputation: 57121
Tell her that she is not going to go home because there is not a professional at your home to take care of her professional needs. She will continue to demand to go home until the day she crosses over, it is how things like this go and there is nothing to feel guilty about.

You and the professionals know you cannot care for her properly and she cannot be alone, she will always hate somewhere that is not home. When she mentions it change the subject, my Grandmother did the same thing but she had to stay where she was. Unfortunately as time goes on and the disease progresses she will become less lucid.

I feel for you and I know how tough it is to go through this but it is an unfortunate necessity considering all the circumstances along with consideration for your health and safety in addition to hers.
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Old 06-17-2013, 07:53 PM
 
Location: USA
7,779 posts, read 8,127,647 times
Reputation: 11522
I hope you have her power of attorney. If she has dementia, she can't reason and no matter what you explain to her, she isn't going to believe it. She can demand all she wants to. That doesn't mean it will happen unless you do it. Why would you? Try to make a life for yourself and visit her a few minutes a day. It isn't going to get any better.
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Old 06-17-2013, 08:01 PM
 
13,543 posts, read 15,031,378 times
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You have made the right decision for your Mother...It is never easy to decide on placement. It actually sounds as thought you had hung in there beyond the point where she should have been in a placement. You have got to trust that you made the right decisions for both you and your Mother.

When you visit, if you are able to push her around the facility, even if you need a CNA to push her wheelchair, do that...Walk around, help her get acclimated. If you notice that she verbally abuses you less in the witness of others....Than make this part of your visits, distract her, eventually she will accept this situation. For an elderly person, giving up their Independence is a life transition that causes grief and loss, and often depression...

Talk to the social worker, they often have advice and counsel for families as well as the new residents. I hope it helps. Be at peace, visit as you can...But, take care of you!!
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Old 06-17-2013, 08:11 PM
 
Location: Tucson for awhile longer
8,864 posts, read 11,171,179 times
Reputation: 28655
Quote:
Originally Posted by lilred0005 View Post
... She was admitted to the hospital, observed for several days and then discharged to a rehab facility for another week. After being observed, ect, her doctors declared that she had severe dementia and could not stay at home unsupervised. I agreed as she almost drowned in our canal out back and had started fires at home ...
Lilred, those ^^^ are your key sentences. You are NOT taking the easy way out, which I'm sure some will imply and you mother will probably say outright. You are following medical advice, even though it includes the added burden on you to deal with the guilt. Severe dementia is not a term medical doctors throw around lightly and is not a medical diagnosis a lay person is qualified to deal with.

Your mother will probably say she wants to go home for as long as she can remember what "home" was (which may not be all that much longer if she is starting fires and wandering). It's really hard for a person who has given home care-giving their best effort and hospitalization was still required. I'm sure YOU wish she could come home, too, IF she were able to function as she once did. But those days are gone and THAT'S NOT YOUR DOING OR YOUR FAULT.

Please give yourself some credit for all that you have already done and all the unpleasantness that you dealt with admirably. Thank your lucky stars that you found a place where you believe she is safe and cared for and it was affordable. Visit as often as you can and try your best to ignore the pleading. I have several friends who had to hear that message, yet nurses would tell them, "She's fine after you leave."
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Old 06-17-2013, 08:19 PM
 
Location: Michaux State Forest
1,274 posts, read 2,659,880 times
Reputation: 1390
Thank you for your kind words. The problem is that she is in the middle phase of dementia, sometimes she seems very lucid, but then she says something that makes no sense. She will sit down with any Dr. or therapist and tell them she can drive, shop for herself ect., but this is the same person who ran out of the grocery store leaving her groceries because she couldn't figure out how to pay for them even though she had cash and a checkbook with her. She only wants me there to take care of her but then won't listen to anything. She respects no boundaries and wants to make all decisions but then tells me people are calling her name over the T.V. and everyone is talking about her. I don't want to have to try to get guardianship because it is costly, very time consuming, and hurtful as she would have to be declared incompetent. Besides she is very good at fooling people.
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Old 06-18-2013, 04:56 AM
 
Location: Wisconsin
7,216 posts, read 6,571,358 times
Reputation: 7668
I have heard of people telling their loved one "You can't come home until the doctor says you can." This takes the "blame" off you and gives them a reasonable excuse to complain about without focusing on you.
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Old 06-18-2013, 07:49 AM
 
Location: Michaux State Forest
1,274 posts, read 2,659,880 times
Reputation: 1390
Yes, I have been telling her that the Dr.s want her to stay at the facility. She says she's calling the ombudsmen because they can't keep her there when there's "nothing wrong w/ her". She can't even write a check anymore plus she often confuses time/dates. She absolutely is not able to live alone and I truly feel that if I have to go back to being her 24/7 caregiver that I will have a total nervous breakdown. I was suicidal some days because my life had become 24/7 looking after her, I was barely getting any sleep because she was constantly either calling my name to help her, breaking things, or getting into things. When I'd leave the house in the morning to run errands she would be calling me sometimes as much as 14 calls, demanding I come home "because she never sees me", or she would go wandering outside. I would get calls from my neighboors that she had fallen in the front yard or almost fell into the canal in back. I don't think I can go back to that life, I also was not able to have any friends, no dating, and no job because everything I had went into watching & taking care of her.
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Old 06-18-2013, 08:27 AM
 
Location: Finally made it to Florida and lovin' every minute!
22,679 posts, read 15,523,559 times
Reputation: 17508
Good advice, Maseman.

Unfortunately, this is really common in dementia patients. My G'mother and MIL both did the same thing. It can be really hard on the family, as you know too well. They told us it takes them about 6 months to get over it. After a while, we couldn't take Granny out of the nursing home because it caused her a lot of anxiety and restlessness.

My MIL made her daughter feel so guilty about leaving her and her father at the asstd. living place that she took them into her home and it was a bad idea all the way around.

Whatever happens, I wish you the best.
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Old 06-18-2013, 08:31 AM
 
4,607 posts, read 4,867,779 times
Reputation: 11386
Be specific, she is here where there are people able to care for her needs. Do NOT mention 'until' this or that.

Part of the 'draw' to go back to her former home is the familiarity--it is something which she remembers. She will 'talk' about going to XYZ for a couple of years. Dismiss it with specifics regarding the care which she now receives. Over time, the chatter will fade.

You have done a wonderful job of getting her headed in the right direction. It is very responsible. Don't allow yourself to get guilt tripped, as you will with every decision. You got her help....now it is obvious that she needs it. You moved her to a full care facility. Soon it will be obvious that she needs it, if not already. In time you will have to make decisions on feeding her, and taking away just about everything so that she does not injure herself. Eventually she will be comfined to a wheel chair, but need to be monitored 'just in case'. Each time you will challemnge your decision making. Use the Dr's and medical resourcers--they have been through this multiple times.

Each time you will challenge your decision, and think you are being 'mean/cruel'; i.e., did i make the 'right' decision.

From someone who has been there, each time you will find out fairly quickly that the decisions you made have become obvious. Maybe you will even wonder why you didn't make them sooner.

Good luck. I am 12 years down the long and winding road with a family member.....she is 96.....and I see no reason why she won't make 100, and beyond. Think i haven't been challenged along the way????
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