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I had to take her out (what a chore!) to receive spinal epidurals yesterday. It was horrible getting her out of wheelchair into the car and the reverse a few times. Probably last time I do it since now in wheelchair full time. She said to me “it won’t be much longer” when I asked her what she meant by that she responded “I don’t have to tell you!” Should I be talking to her doctor about it or let it go as long as she’s eating and getting out of bed each day? I know she feels helpless and yet is stubborn. For example, she fell last week self transitioning from wheelchair to bed. Xrays had to be taken of her hip, one of which was replaced a few years ago. I’m afraid she’s being deliberately reckless and stubborn. And I don’t really know what to do about it.

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My first thought about your mother was that it's not being reckless because I'm guilty of doing the same thing. I think If I can just do what I'm told not to do then I can prove that I can do it myself and I'm not as feeble as they make me out to be. And also you hate to have to bother someone to come help you, I mean...(my thinking) I know I can do it. I'm just lucky so far I haven't fell doing that, but I have fallen at other times because I just lose my balance if I move suddenly. I also took care of my mother for 4 years before having to put her in a home, and I'm afraid of getting to the point of not being able to just be me. It's like what kind of life does one with dementia have? I know even when mom was able to walk around it was just that..walking the halls of a locked unit, same thing everyday. Oh how so depressing. I hate to sound so down about it, but I've been there with mom about 3 to 4 days a week except when I've been hospitalized and couldn't be there. I just lost her Jan 25th. I have serious health issues. I just don't ever want to just give up. Guess I'm afraid of the same fate. I'll be 70 in Aug. Please excuse me I also have AADD really bad so I'm just all over the place here. And I'm new and old at the same time. lol
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You said she has dementia and apparently is in constant pain. She has qualified for long term care which means she's pretty advanced along the road of dementia. Since she has dementia it's unlikely that she's cognitively able to make a complicated, sustained, plan to induce guilt by being deliberately reckless and stubborn. Yes, tell her doctor, but maybe also consider that it's likely she's reckless and stubborn because she's cognitively impaired. It's easy to read ill intent in the words and actions of loved ones with cognitive impairment, in my experience, that's seldom the case. She's likely just doing and saying whatever pops into her confused mind in the moment. Her statement of "It won't be much longer" is sadly, an accurate statement based on her condition. She's in long term care, in constant pain, most of the joys of life are in her past. She has little to look forward to other than continued pain and certain death. Maybe she said that because it's true? Maybe in that moment she needed to comfort herself and that's what popped into her head? I know it's heartrending to see our loved ones decline and even more heartrending when they state the obvious out loud. (hugs).
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DMMednick1957 Apr 14, 2019
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I am afraid that she is trying to guilt you for her being placed in a facility.

I wouldn't give it any brain time, she has enough eyes on her that she will get medical care when it is required.

Toughest thing I ever had to do was place my dad, you would have thought I made him old and sick. Oh well, it is what it is.

Find the humor in things and depend on her caregivers to notify you if she is displaying anything that requires medical attention.

Hugs!
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Reply to Isthisrealyreal
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MY heart goes out to you. I went though something similar years ago with my LO. If she has been diagnosed with dementia, then, I wouldn't chalk up her behavior to anything other than the best she can do. The dementia damages the brain and the patient really can't be blamed for being deliberately reckless or stubborn. It's just brain damage. All we can do is try to protect and help them.

My LO kept falling and getting fractures, including spinal fractures. At the time she was in regular AL and I was transporting her to and from so many doctor appointments......and her in wheelchair, transferring in parking lot, all alone, no help....it's maddening. I get it. Try to get some help or get others to transport. After, I got her into MC they did all transportation. Not sure why you had to take her out of LTC, but, I'd consider the progression of her condition. She may become wheelchair bound and need two person assist to transfer. It's a huge challenge, especially, if you have to keep transporting with no help in your own car, unless wheelchair accessible. You might explore Doctors who make house calls. There are groups who do this for seniors, disabled, etc.

One thing that helped my LO with her spinal fractures was Cymbalta. It's treats pain, anxiety and depression. I'd explore meds with her doctor to make sure she's properly treated for pain. She may not be able to fully report pain due to dementia. Her Ortho doctor may want to see her back periodically to check status of healing in her fractures. I asked about shots for my LO, but, ortho said she was not a candidate. Not sure why. Eventually, she did heal, but, stayed wheelchair bound. That was almost 5 years ago.

No matter where she is, constant supervision may be needed to keep her from falling. That's usually not possible anywhere though. You might explore alarms for her bed and wheelchair. The alarm sounds, so you can get to her if she tries to get up. The legality varies by state, I'd check with a professional on these things or discuss with her doctor.
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DMMednick1957 Apr 11, 2019
Thank you for the compassion and suggestions. When she was hospitalized recently she did have those alarms on bed and chair. Great idea.
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