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When you say she was tested for dementia, was it a complete examination? Many primary care physicians do what is referred to as a mini mental exam of 10-40 questions that only those with definite dementia would fail. If you are fortunate to find a neuro-psychologist within driving distance they administer an in depth exam during a 2-4 hour appointment and even get a family member's input. There are many changes that take place as dementia progresses and she could be early in the progress. A friend was told more than once her husband had Parkinson's related dementia and she finally had him tested and learned it was Vascular Dementia along with Parkinson's and the symptoms, progress and treatments are very different. There are many different types of dementia that often get lumped together but the best treatment may not be the same for each. The test is not simply sitting in a psychologist office talking, it is a variety of hands on tests that can show thinking deficits in various areas of the brain.
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Did some of these other posters not read that this woman has no savings and only social security? Does she live in a state that has an indigent care assisted living program? There is no such thing. Assisted living is expensive!

The mother also does not sound like she would qualify for nursing home care. Really folks, you can’t just pop someone in a state subsidized or private nursing home just because you are embarrassed by her behavior in public. This woman is mostly ambulatory and does not suffer from dementia. Nursing home licensing requirements limit admissions to people who meet level of care conditions. And in almost every state, assisted living is private pay and out of the financial reach of the inconvenient, but otherwise completely lucid but angry mother.

I have a feeling that the mother would jump at the chance to be out of her daughter’s home if she could afford it. I also strongly suspect ample hostility and resentment on both sides because everyone is trapped by circumstance.

The daughter has indicated that her mother was once a good parent. Does that not count any more? What does “entitled” mean? Give some examples.

Anyone would scream if their feet were being dragged backwards in a wheel chair. Why would anyone use a wheel chair knowing there are no footrests? It’s downright cruel. No wonder she was “screeching!”

I see a couple of caregivers who are seething with resentment, possibly from the first days following the mother living with them, especially the husband. If the money from the sale of the house is gone, who spent it and on what? Who says the mother isn’t paying for her care? Is she paying the caregivers or isn’t she?
If these folks are stuck with her mother, at least enroll her in an adult day care program and get out of each other’s way during the day. In the meantime, see if you can get some affordable goal directed, time limited family counseling from your local community mental health center. This family is at an impasse because neither the mother or the caregivers want to live together but they are stuck with each other for financial reasons.

And, as usual, some of the people who post on this website quite obviously hate old people and cannot grasp that the caregivers point of view may not be entirely valid or that the person being cared for is still a human being with rights and feelings whose point of view is being completely discounted.
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Beatty Aug 2022
I no longer feel the need to read further. You summed up the situation the OP described in such a clear & reflective way.

Up to the family to decide how to move past their inpasse now.
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Time to put in some firm boundaries - she can understand you, so make it clear; if you’re going to carry on like that, we won’t take you out. Don’t expect her to change, but you also don’t have to take that nonsense. You would have strategies with a toddler - you wouldn’t just cave into that behaviour, it’s no different with your Mum. Also, look at getting some repute care so you and husband can get a break - build it up, then a holiday might be possible. To be able to care, you HAVE to make self-care a priority, otherwise you will get ill and be unable to continue ti care for her. If she’s not willing to co-operate it may be best for you all to look at a care facility.
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Sorry you are dealing with this. Had a similar situation with my mom, and thankfully we got her into a great nursing home almost 2 years ago.

Getting in touch with an elder care attorney in your area (you can use your mom's SS income to pay him/her) OR your area agency on aging to start the paperwork so you have 1) a durable Power of Attorney to take over on financial and other decisions if and when needed (may not need it yet, but best to have this done in advance of the need), 2) get an advanced directive for her so you are her "medical agent" and can make decision if and when needed, 3) work through what needs to happen to get her qualified for Medicaid coverage of long term nursing home care (there are lots of rules about spending down, and there is a 5-year look back provision which means if she gave away lots of $ it could be an issue), 4) work out "on-line" stuff (so you have access to her accounts and can pay for thing including the nursing home's "costs of care contribution" amount (once qualified for Medicaid, each state requires the resident to may a monthly payment to the nursing home out of their Social Security and/or other retirement accounts if one has others such as pension) but this is all easier to handle with "on-line" accounts for both the bank and anything else and 5) this sounds terrible, BUT: if for any reason she ends up in the hospital (a fall or other thing) over night; the social workers at the hospital can help find a nursing home (first typically as a "rehab stay" but make sure the facility is Medicare and Medicaid qualified FIRST and have her go there for a stay) BUT MAKE SURE to tell the social worker 1) it is NOT safe for her to be in your apt alone, 2) you cannot care for her and 3) when signing the "rehab facility's" admission paperwork MAKR SURE TO CHECK the boxes "NO, you personally will not be financially responsible," and "NO, you personally will NOT take her back," and "Yes, you will work with the facility to get her Medicaid Long Term Care qualified." You need to be clear with that it is "unsafe" for her to be alone in your apt and "you cannot care for her." These words someone trigger words are necessary so that the state can step in and Medicaid may be an option.

Also, not sure how the "dementia test was done" but if not done by a geriatric specialists (sorry many GP just do a simple quick "clock test") it may be off, did they do a full battery of neurological tests, scans and review of ADLs and IADLs? Once my mom landed in the nursing home, the geriatric board certified neurologist who also is a psychiatrist and her geriatric internist (also board certified) confirmed the dementia I had long suspected.

Your mom is 87 and this is NOT going to get easier. Setting boundaries now, what you can and cannot do (you cannot do this type of care 24/7 alone) and start taking the steps to provide the care she needs in a facility so you can get your life back.

Good luck, this is not a easy journey.
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Clairesmum Aug 2022
Really good information and instruction about what to do and in what order. Worked as an elder health nurse and in adult protective services. Those situations were often overwhelmed and exhausted caregivers who had done their best for so long and just couldn't do it anymore. Getting documents in order, and then contact the local COA to find out about care providers for home care is a good idea. Also, the local area agency on aging (the COA or health department will know which one) can provide home care services and assessment of clinical eligibility for Medicaid (once a Medicaid application is ready to submit.) And Medicaid starts on the date that they receive the application, and they have to give you time to submit more documents when they request them. So a mostly ready application is good enough to send in.
A patient who is receiving Medicaid and needs nursing home level of care can receive more services at home and that relieves caregiver burden quite a bit.
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Now is the time for you to put mother in her place. Stop playing her games. Not only will your life be ruined, but so will your marriage.
Explain to her that she needs more care than the two of you can provide because her conditions are too serious. That you and your husband have been looking at nursing homes for her so she can get the care and pain management she needs.
I can all but guarantee that she will cut her crap by half and her 'performances' in public will be greatly reduced as well.
Also, you and your husband will be taking a vacation so plan something now. Your mother will be going into a care facility for respite care. No discussions and no arguments.
She is dependent on the two of you not the other way around.
You and your husband are not the only people on earth who can take her to a doctor's appointment. Or who can help her bathe. Or run her errands. I did this as work for 25 years. Get her a homecare aide.
When she complaina about the pillows, blankets, or anything else your new response is: Too damn bad. If you want better get it yourself. See how fast she stops complaining and making your lives miserable.
My mother is like this. Less now than before. She'd complain about every meal that was put in front of her. Even if it was her favorite. Until one day she made snide comment about the supper. So I collected her plate and threw it in the garbage. No supper that night. The complaining reduced greatly and fast.
You cannot allow her to call the shots and run your lives. Put her in her place. You never tolerate an ingrate. Not for one moment.
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Jeancarolmo Aug 2022
You are a care giver that should be avoided at all costs. Elderly abuse comes from people like you. If you don’t die first, your time will come, a d Karma is ***.
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You and your husband have sacrificed time, energy, money and emotion on having your mother live with you. But.

I just deleted a bunch of stuff because someone else just posted about not criticizing people who are doing their level best, and I agree.

So try this instead: https://www.servicelink.nh.gov/about-us/nhfcsp.htm

In particular, about half way down the page, there's a bit about developing skills.

And get hold of that med supply company and box their ears - you do not, ever, use a wheelchair without its footrests.

There are no podiatrists who do housecalls in your area? I'd check, there should be.
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NewEnglander Aug 2022
Thanks for the link. The VNA suggested this link as well. I've also got some feelers out for caretakers and respite organizations. I appreciate it. And yes, the med supply company will be hearing from me.
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Thank you for your reply.

Part of the issue, keeping her at home is the cost and time. She has no money (she did when she sold her house but she blew through that in short order). In some ways she is independent in that she manages her own finances (now that she lives SS check to SS check she isn't shopping anymore).

As far as time goes, well, the only county nursing home in our area has a waiting list and that might be her only option as far as nursing homes go.

But you're right. As long as she lives with us, we're just not going to try to make her life more comfortable. We'll feed her, bath her and try to arrange for others to get her to doctor appointments. Both my husband and I are done.

The reason the VNA gave up on her (in my OP) was because she wasn't willing to put the effort forth. She just finished up physical therapy with them and her walking is no better.
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BurntCaregiver Aug 2022
NewEnglander,

If the only county nursing home isn't available and your mother needs to be placed, put her in one in a different country if you have to.
It's good that she's mentally with it enough to manage her own finances. That helps the situation. She should not be managing her own finances because really she shouldn't have any.
You and your husband should be taking her social security check every month. She lives in your house and you two are her caregivers. That should not be free. It certainly wouldn't be free in a nursing home or assisted living.
If she's not willing to make an effort to help herself to improve her mobility and her attitude, then you stop making such an effort to make her comfortable and happy.
Bare essentials only. Food, meds, a place to sleep, some hygiene assistance.
No catering to her in any way. No babying her and do not tolerate fussiness.
Often the best thing for an elder is tough love. Sometimes they have to learn the hard way that being needy and elderly does not entitle them to ruin the lives or their adult children by turning them into nanny-slaves.
Your mother may have to learn this lesson. So teach it. Don't put up with her crap.
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I am curious as to how/why your mother came to live with you. Do you have siblings?

Are you willing to further sacrifice your marriage to this situation?
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NewEnglander Aug 2022
Mom moved in with us after my father passed away and she sold her house. I do have one brother but his wife is ill and he is busy taking care of her.

I'd prefer not to sacrifice marriage to this situation but at the same time I hate what it's doing to my husband.
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Pain changes people. Frankly I would tell doctor she needs to be properly medicated to manage her pain. Why make her suffer in pain to prolong her life like this? So what if proper pain management shortens her life by a few years. At least her remaining time will be made more comfortable.

Now for her acting out when things aren't going her way that requires behavior modification from you and husband. Stop catering to her. If she doesnt like this or that she can get an alternative herself.

If she makes a scene like when she was being taken to her appointment you simply don't take her to appointment or you have her arrange alternative transport to said apppintment that is not you. Mom is only doing what she is allowed to get away with. Time to stop letting her get away with this unacceptable behavior.
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BurntCaregiver Aug 2022
You're spot on right about the appointments, sp19690.
I find that it's better all around if I do not take my mother to doctor's appointments anymore. So I've all but stopped taking her. I'll give whoever does take her a ride and will pick them up, but I rarely go myself. This has improved things some.
She doesn't give "performances" and make unpleasant drama scenes when someone else brings her. That's reserved for me. Her greatest pleasure from giving a performance to a doctor, nurse, or other healthcare professional was when they'd tell me off and carry on about being more kind and compassionate to her.
I'd do the same thing she always did to me when I was a kid. I got punished whether I actually did something or not. It depended on whether or not she needed a scapegoat for something that day. 'You're going to bed with no supper'. Sometimes giving a 'performace' could be more important than me making her a meal. I'll make her a sandwich or she can fend for herslef while I sit down with my man to a home-cooked meal. The leftovers go straight into the dog's bowl. People have to respect themselves enough to let others know, their auacceptable behavior will not be tolerated.
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For someone's personality to change, there is a problem. May be she is in constant pain. As we age, there is some cognitive decline. I would ask her doctor for a name of a pain management specialist.
This doctor can help regulate her pain meds and OTC so they work together. My daughter says you can take Ibuprofen and 2 hrs later take acetaminophen. They are 2 different types of pain killers.

Think it maybe time for a sit down with Mom. Tell her that you both are tired of catering to her. That she is self centered, self absorbed, uncooperative and entitled. That just because your her daughter, does not mean she can abuse you. I am not beyond a little threat, "Maybe you would be happier in an AL because you don't seem happy here. You seem miserable and you are making our lives miserable" If she starts to scream and holler, tell her sorry but things have to change and it has to be her. Tell her to think about it, and leave the room. Let her cuss and cry. She is acting like a child.

Are u renting that chair or did u purchase it? Either way, they needed to provide those foot rests. Wheelchairs come with foot rests.
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NewEnglander Aug 2022
We (actually Medicare & Mom's health insurance) purchased the chair. We called the med supply place and they said "Oh that chair should have had foot rests with it. Oh wait, here they are behind the counter." Idiots. Anyway, I didn't have time to get the foot rests before her appt.

You're right about her acting like a child. I contacted my Mom's BFF (they've known each other for 70 years) and asked her if Mom was always like this. She said they had fun as teens but as the years went on she saw the selfish come out in her. She said it's really bad now, that's why she doesn't call her every day anymore (they live 2,000 miles apart now).
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If it’s any help to you, this type of AL resident (my mother was also an example), does REALLY WELL in residential care.

Time to start doing the research.
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If you're just here to vent, vent away! If you're also here to find advice about how to get out of this untenable situation you find yourself in, you'll get that too.

If your mother is able to act nice & laugh amicably with her friends on the phone, then she's also able to act that way with you and your husband but CHOOSES not to. It's that simple. I'm sorry she has osteo-arthritis. So do I, real bad in fact, yet I don't take my pain out on my husband or my children; it's my cross to bear and I don't expect others to bear it FOR me. That she chooses to age without grace or dignity is not something YOU should have to deal with any longer. Why give up your lives and your marriage for this? It's not like the woman has terminal cancer and is in true need of your attention 24/7, for petesake.

Get mother placed into a lovely Assisted Living residence and have her pay for others to deal with her histrionics. Let her order Schwann's food to be delivered to her apartment so she can pop whatever she likes into HER microwave and cook it herself if she chooses not to eat the food prepared for her at the ALF. She'll have other seniors her own age to kvetch with and to socialize with all day long, and best of all, she'll be out of your hair. You can sign her up for the in-house doctor who she can see to her heart's content w/o having to leave the premises, so no 'transport chair' will be required at all. Staff will be available to her 24/7, too, so all her needs can be addressed.

My parents lived in a beautiful ALF for nearly 7 years, Memory Care for the last 3 for my mother. They had a great life and I was able to preserve my relationship with them and with my husband as a result. I did not have to sacrifice my life to be a hands on caregiver to an ungrateful and complaining woman *which my mother was also* so it was a win/win situation.

Wishing you the best of luck taking your OWN lives into account now and not focusing on JUST your mother's life. There are THREE lives to take into consideration here, not just ONE.
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It's not going to come as a surprise to you that all of us who respond will tell you it's time for mom to move out into some kind of different living situation. You'll never change HER, you can only change YOU.

A 'sreeching' elder--OMGosh--my MIL would do that. IF you could get her to go to the dr in the first place. Difference is, My MIL still lives' alone. She creeps around her house, pushing a kitchen chair around for balance and won't use the walker b/c it 'makes her look old". DH told her that using a chair makes her look DEMENTED and that went over just the way you think it would.

She WANTS to live with her daughter and her DH. And there is NO WAY on earth that is going to happen.

You need to prioritize your life--many marriages do in fact break up over the care of an elder-esp when the elder LIVES with you. My SIL and BIL have told MIL that there is NO WAY she can live with them. Period. NO being a complete sentence.

She messed up your day, and then she's home, chatting to friends and you and DH are wasted and angry. She seems incapable of having compassion for you.

Start looking for the living arrangements that are best for her. Independent living, a NH, and Assisted Living--whatever fits her budget.

PLAN that she will be furious, and then you won't be surprised when she is.

You cannot change her, and trying to is a waste of time. She sounds pretty content with the status quo.

Making the 'move' with love (if possible) is best, but she will be angry. Plan on that and if it doesn't happen--good for you!

When caring for relatives starts to impact your life and relationships negatively, it's past time for the discussion of 'what are we going to do with mom'.

I hope you didn't make that promise that you'd never 'put her in a home'. My MIL extracted that promise from her kids, but I don't think they will be able to keep it. Her next big fall will have her moved to AL. She just doesn't know it.

Good Luck.
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NewEnglander Aug 2022
Thank you for your response. You are so right on so many points.

No I never told I'd never put her in a nursing home. When she was in better health and we had a better relationship I used to tease her, as a joke, that I was going to call a local NH. We would laugh. I'm not laughing anymore.

Besides, she has no money so getting her in a nursing home will be challenging. We have a county home, but the waiting list is very long.

What I failed to mention was that my husband (her primary caretaker while I'm at work) is not in the greatest of health either (valve repair 3 years ago, Atrial fibrillation which is getting worse etc.). So I guess our only option, at this point is to simply provide her food and a remote control. Maybe that will be easier for us. The rest is up to her to figure out.
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I'm going to address the transport chair issue first - it may seem like a simple matter for her to hold her feet up, but when you've lost significant muscle tone (and anyone that age has, no matter how fit) plus there is pain from arthritis lifting your legs for an extended period of time or even just holding up your feet isn't all that easy, in fact it may well be impossible.

As for the rest : I think there is a real disconnect between your expectations and her needs. No matter how loving and caring you have been she no doubt feels her loss of independence and her increasing physical deterioration keenly and is not willing/able to make the effort to age gracefully. It's OK to decide you can't continue this way and to help her find a placement in a care facility, but if you are determined to have her live with you then you need to grow a thicker skin and not stress so much over her Negative Nelly narrative. You need to learn to respond that yes, getting old sure sucks and you are sorry her life isn't easier, THE END.... stop pressuring yourself to fix everything.
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LittleOrchid Aug 2022
Oddly enough, my mother actually preferred to NOT have the footrests on her transport chair unless we were shopping or walking in a garden or some other longer event. Her joints would no longer reliably support her, but her legs were very strong from many years of working, hiking, and gardening. I do believe she was in a very small minority. For her, though, if she were going to an appointment where she would need to get out of the transport chair, she preferred not to have the footrests in the way. I think that you are right that, as we age, most of us will suffer from some form of arthritis and various muscle and joint pains. How those affect us and how we deal with those pains are very individual.

"As for the rest"... I agree with you in most of that, also. As caretakers, there is only so much that we can do, only so much that we even should do. As I age I am constantly adjusting my own expectations of myself and adapting my surroundings and my life so that I do not become a nuisance to my children. One thing for sure, whatever else happens I will NOT move in with either of my children. I think that if my mother had actually cared for an elder--even a little bit--in her 60's or 70's she would have had an entirely different attitude.
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