Being my grandmother's caregiver is driving me insane. How do I get through to her without butting heads with her advancing dementia?

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I am in my early 30s. I have been my 90 year old grandmother's advocate for about 4 years. In early 2013 I became her Power of Attorney (durable and health). In January of 2014, she had a mini stroke, and she was placed in a rehab center, where she was then able to go home in late February, but only with 24/7 care. Both me and my younger brother shared taking care of her 24/7, but shortly after my brother got a job and moved away, so I was left alone with my grandmother. Now stuck between a rock and hard place with her care, I agreed to no longer work, and in turn, she moved in with me and my husband in late March with an agreement to pay me as her caregiver.

During the last 2 months, she has declined quite a bit, to the point where I can now barely reason with her. She overlooks her own safety, and when I try to redirect her attention to being safe (or whatever the need is at the time) she gets frantic about whatever is on her mind. For example, she'll stand in compromising positions just to wipe her nose, when she could fall if I wasn't there to help. If I redirect her to sit down and then wipe her nose, she acts irrationally and can't understand that she is being unsafe otherwise. In general, I am totally worn out. I have to pay all of her bills, manage her meds, Dr. Appointments, laundry, monitor bowel habits, handle all of her food and calorie intake, do all bathroom changes, bathing, hair washing, etc, and she complains to me through every minute of her personal care. Plus, me and my husband are trying to slowly clean out her house by ourselves with 50 years of junk, and my dear husband takes care of both our lawns. It's been such a drain on us.

I have nobody in my immediate family for support. My own mother is very ill, and my Uncle is in his own little world and has no concept of what I deal with for HIS MOTHER. My brother and sister live out of the area, and I am stuck in this crappy situation in my early 30s when I am supposed to be making my own life happen with my husband.

I realized that I needed some relief. I contacted our Area Agency on Aging, but my grandmother doesn't qualify for any programs. I enrolled her in a private pay adult day program 2-3 times per week, which gives me 8 hours every few days. I finally decided a vacation was due after a few years of caring for my grandmother, and 5 months of hell with her in my home. I got away with my husband for a week, thanks to a respite stay for my grandmother. When I picked her up, it was like I had no break at all. I feel completely drained again.

I have done all I can think of to do right by her, but as she has progressed, I have been having a horrible time getting through to her. We now have arguments daily because I want her to be safe, healthy, etc, and I try to help her, but she doesn't want to listen and she is constantly doing the opposite of what she needs to do. We NEVER had disagreements in the past, but ever since July, she has been unbearable. I notified her Dr immediately when I noticed her becoming more disagreeable and confused, and we tested her for a UTI, which came back negative. Her Dr said she's just declining/progressing. I also put her on a waiting list for a Nursing home back in February, and she still has people ahead of her on the wait-list. I don't know how much longer I can deal with her. I feel that I have given all I can, and I feel so bad about it. I am trying to be as strong as I can.

Any thoughts on how to be more effective getting through to her or making the situation better in general is appreciated. Thank you for reading such a long description!

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Thank you Sunnygirl1....we have had a financial planner and her elder law attorney review her financials....she doesn't qualify for any programs through our Area Agency on Aging until she is either on Medicaid or Hospice. Until then she is private pay. Her elder law attorney has made it very clear what we are allowed to do with her spending, assets, etc....I think it's just a waiting game until something opens up/I find a good place for her. Thank you for your thoughts!
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I would find an expert to review her financial situation, before taking someone's word that she doesn't qualify for services. In any event you can find out what she needs to do to be able to cover the cost, whether it's private pay, insurance, or Medicaid. I would do that before I sold anything or transferred any funds.

Trying to handle and care for a person with the needs your grandmother has is really overwhelming and it really takes a team of people. You are doing the right thing by finding a good and safe place to care for your grandmother.
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Jeannegibbs...the nursing home can't give a particular timeframe. She has to wait her turn in line. She's around the halfway point since b
She was put on the list 7 months ago...I am hoping she will have a place there sooner than later, but I am now going to consider a group home for her as well.

Countrymouse....thank you for sharing your experience. I am sorry you have a similar situation going on. I did have an Occupational Therapist come and we did a lot of things to help her around the house, but she REFUSED to participate, learn how to use them or follow techniques....she has a stubborn streak. I will learn to be more accepting of these daily challenges and learn to let things be. I feel like it's a natural reaction to want someone to be safe, so I will have to do my best to subtly guide her when needed instead of creating conflict by correcting her...I hope that makes sense. Thanks again everyone.
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L4T, I'm laughing out loud because I just sat down to read your post fresh from tearing my hair out with my mother AGAIN. Not two hours - not 2 hours! - ago she swore crossed her heart and hoped to die IN FRONT OF WITNESSES that honestly, promise, she would always press her trigger to call me before she got up from her chair. Yes, she understood that keeping safe made her much less of a "nuisance" than trying to do things by herself and falling. Honestly, she got it. She wouldn't get up on her own again. And so here I am having sprinted in from the garden because her chair alarm has sounded to tell me she's off on her travels again...

And when I catch up with her, as she totters towards the bathroom, and say "mother! Why didn't you use your call trigger?" she is extremely ratty and snaps "I did!" Er, no, she didn't. What she will have done is dab feebly at the button and pretend she didn't realise it hadn't worked. And yes she does know how this trigger works, because she uses it fine when it suits her.

Why did I believe her? I didn't believe her, is the truth, because she has been making that same promise daily for more than 18 months, during which time she has had three ambulance trips to ER and numerous more minor falls.

We are wasting our breath, you and I. Whether it is the dementia, or their personality, or its just 'seeming like a good idea at the time' our loved ones cannot/will not/are not going to comply. It's not happening. I am currently in the process of negotiating for an over chair table she can't move and a bed rail she can't climb over (oh Lord!) to prevent my mother physically from getting to her feet unaccompanied, but wish me luck because in the eyes of the law this is a 'deprivation of liberty' and I am going to have to demonstrate that it is in my mother's best interests to be deprived of that small degree of liberty to prevent her from hurting herself. Or, bluntly, killing herself - because sooner or later it'll be her hip or her head, and either would be the death of her.

Listen. Stop talking to her about risk. You are wasting your breath, raising your own blood pressure, making her miserable and, most important of all, getting nowhere. Get the OTs round to have a good, thorough look at the house and at your grandmother's daily routines. They'll identify places for strategic kit like grab rails, hand rails, perching stools and so on; and suggest things like pressure pads, door alarms and what have you which will at least help you monitor what your grandmother is up to. They haven't invented one which will tell you before she does whatever she's planning to do, but I hope they're working on it.

This time last year I was exactly where you are now. I felt INCENSED with my mother. It was impossible to believe that she wasn't, at least partly, being intentionally defiant. I still do feel a vestige of that emotion, especially because she is so plausible when she promises to change. But I know, in my brain, that it is all baloney and that this is a subject that she cannot grasp. You just have to take deep breaths and all the preventive measures you can think of. And once you've done that you have to accept that falls risks cannot be entirely eliminated. And once you've done that, you have to decide whether you are still prepared to take responsibility for her safety or not.

Believe me, give up expecting your grandmother to take safety on board before your head explodes. I'm walking beside you, I really do know how full and sore your heart must feel at this time. Big hug.
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Gram is on a waiting list at an appropriate care center. Can they give you any kind of a guessimate about how long it usually takes for a name to work its way to the top? Obviously that is a very inexact science. but knowing that there is an end in sight might help you hold on. Especially if you can reduce some stress by learning more about dementia and what to expect.
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Thanks for all of the advice everyone. I am getting some new insight and ideas....thank you!
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Blannie is right, even elders without dementia have falls. My Dad [93] is still sharp 90% of the time, but man that guy can fall... he'll reach down for a pencil on the carpet and keep on falling... I lost track how many times he tumbled in the backyard doing yard work.

Last month I got him a walker that has a basket, seat, and handbrakes.... he loves it... but I wish he would use it on a regular basis. At least now he can get from the front door, down the driveway, to the mailbox and back without a passerby having to pick him up off the driveway.

My parents are always worried about what will the neighbors think if a neighbor sees them outside with a walker or a cane.... [rolling eyes].... I bet the neighbor is thinking "it's about time they used those things".

Both Mom and Dad still "furniture walk" meaning they use the walls and tops of furniture to help balance themselves from room to room.
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First of all, you're a wonderful granddaughter to do what you're doing for your grandmother. But even elders without dementia have falls, it just goes along with aging for a lot of folks. And if it's not falls, it's not taking medicines as they should (my mom did that and we had all kinds of results from that). Or it's not eating or a myriad of other behaviors that are enough to make any caregiver frantic with worry.

You can only do what you can do. If your grandmother falls, she falls. That's a tough thing to say, but it's not going to do either of you any good if you get yourself burned out and your grandmother has no one to care for her. So step back a bit and keep your fingers crossed (or pray) and do the best you can. And let the rest go. You don't control the universe and you can't keep your grandmother from falling by worrying or trying to get her to act in ways she can't remember. Of course you can put in safeguards (like take out throw rugs, make sure her shoes have good soles, etc.) but you can't make her safe every minute.
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RocknRobin is totally right - you don't get anywhere trying to reason your way out of dangerous behavior, because reasoning abilities are just gone. You cajole, finesse, redirect, distract, and realize that keeping someone safe who is mobile and strong but has no judgement is a one-on-one full-time 24/7 kind of a job that one person alone typically can't do.
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Thanks Montana1122...I will see if there are any group homes near us. RockinRobin...Thank you for your thoughts. I am finding it a challenge to help her stay safe when she is in a compromising position. I never argue with her with everyday things, but I feel I am doing her an injustice to not try my best to keep her safe when she could fall. I let things slide with her regarding what she believes to be true, mental things, etc, but regarding her safety, I am very concerned. It's not really arguing, it's redirecting her so she is safe, but yes, it's still a conflict nonetheless. There are good days, where she will understand, but most days she cant be reasoned with. Is it better to just let her do what she wants and disregard her safety?
Freqflyer....thanks for the heads up about your parents. I am sorry you are dealing with this too. One of my grandmother's doctors told me a similar thing, about how they will progress quickly each year...it's so sad to see.
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