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She denies how often she gets up, yells my name, drinks tea, wants water, loses her emery board, can’t find her Kleenex. Don’t get me started on the fixation with her bedcovers being straightened. All. Day. Long.



she denies she pooped in her commode, picked it up, put in her depends and went to restroom to drop in toilet. Thank god I caught her before she flushed



She broke the door off hinges in her room (sliding/pocket door). She denies standing banging/rattling door handles (baby safety knobs) even when I’m standing there



she denies she spills water, lies about trying to hide things she’s tried to “help”, denies she sleeps & naps all day





this all would be fine, but she has become demanding, requires immediate responses and help within seconds. She won’t wear her hearing aids anymore. She’s destroying my home, falling, causing so much anxiety. I’m a German Shepherd, always on alert. Always.



she is final stage kidney failure, here at my home, with hospice 2x week



any suggestions to get her to accept her limits? She says she does, nods, agrees, lots of “I know” but she just doesn’t seem willing to acknowledge she, SHE, this previously proud, clean, smart woman could possibly becoming incontinent, cannot remember things, cannot take care of herself. She thinks she can function, when she can barely walk a few steps and hardly hold a glass of water



She is dying. She knows it. But accepting the reality of what that means and the loss of dignity seems to be the biggest roadblock right now.



I’m just tired. No sleep. Pins and needles and resentment. And sadness. It’s hard. :(

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This sounds really hard. For both of you, but mostly you since your mom's grip on reality appears to be pretty much gone. I think it would be best if you, very quickly, come to terms with the fact that her brain is broken and does not remember virtually anything from the sounds of it. You do not need her to admit anything. You know the truth and that's all that matters. Really, she obviously just can not understand the situation and you will both be less stressed if you don't expect her to.

You need some help ASAP. This level of care is much too much for one person. I'm curious - from your profile, she was in AL, but now she lives with you. For how long? Did she run out of money or her condition deteriorated beyond AL capabilities?

Anyhow, you need caregivers. I would also talk to hospice about something to calm her down a little bit. Sounds to me like she's anxious and that can not feel good to her. I think it would be very helpful to both of you.

I hope you find some relief.
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MichiganToOhio Feb 2023
She’s in her last weeks, maybe months

she is on meds from hospice for pain and anxiety, with increased dosage at bedtime to help as sundowning was becoming evident.

she is little trouble, yet. I am exploring overnight help if it progresses more during the night.

it’s just clear the last few days she cannot accept certain aspects of her situation. And they all are relative to self respect, and refusal to acknowledge it at this point. How dare anyone think she could possibly touch her own poo.
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I suggest you stop asking her to "accept the reality" on your terms. She can't even conceive reality in the way you expect her to. She needs continual support with all day to day functions. Get help.
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I know what you mean - they can not imagine that they do the things they do, but here we are, knowing they do all kinds of unimaginable things. Just let it go. Don't even try to reason with her. Just deal with what you need to deal with. Trying to get her to admit that she did X and Y is really not going to help you.

I would talk to hospice about her agitation - breaking the hinges off the door took some work! I would want her dosages re-evaluated and probably increased a little bit.

Good luck. Take some deep breaths. Since you say she may only have weeks or months left, it's not a horribly long time but I'm sure every day seems like a week. Please get help. Before my mom went into AL, I had lots of caregivers and it helped keep my sanity, something that's very important!
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You’re exhausted!

Your profile says that she is in assisted living. I’m confused. Did you take her home? If so, please look into hiring additional help so you can get some much needed rest.
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I'm guessing you took your mom out of the assisted living facility and brought her to your home huh?
She is wearing you out. She's the one who is dying, but it may be you who beats her to the punch if you're not careful. Caregivers have a 63% higher mortality rate than non caregivers, and 40% of caregivers caring for someone with dementia will die before the on being cared for from the stress. Those statistics are real and very scary.
You need more hands on help with your mom. Please hire some ASAP(with moms money)so you can get some proper rest, so you don't become one of the statistics.
And whether it's the medication or dementia, your moms brain is no longer thinking straight and there's nothing you can do about that, so quit wanting her to be like her "before sickness" self. She can't be that person hard as she may try and the sooner you can accept that the easier it will be for you.
It's hard, many of us know that, but when dealing with a broken brain, we all have to learn to choose our battles wisely. And a lot of what you have described isn't really worth fighting over.
Keep in mind too that when the time draws closer to her dying you can have her transferred to the hospice home where they will look after her 24/7 and if she passes within the week Medicare will cover it 100%. If she would have to be there longer than a week, it then rolls over to private pay.
Please start taking care of yourself, as you are beyond the burnt out point and I'm sure if your mom was well, she wouldn't want you killing yourself over her.
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All that you describe is normal in dementia. And it won't change. I think that the larger question is how long you are going to be able to take this 24/7. We have seen people who are caring for elders get quite ill, have heart attacks, strokes, etc.
I think the bigger question now is that you are facing tough decisions that won't be without tears and grief on the part of you all, but that can only be avoided at great cost. Your life should not be sacrificed upon the altar to someone who has already had her life, imho. I sure do wish you the very best and I am so sorry.
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There's a lot of things a person with dementia is leery to accept. It's chaos in their minds they're dealing with plus your mother is dealing with death staring her in the face. If she wants to maintain her dignity by saying she'd never touch poop, then fine why insist she admit such a thing to further upset her? You don't argue with dementia anyway, first and foremost.


No suggestions to get your mother to accept her limits. That ship sailed with the dementia dx. With this limited time left for her I'd let her be. Hire some help to relieve you and allow you some private time.

I'm sorry you're going thru this. Best wishes moving forward
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Michigan
You aren’t able to handle your moms illness along with her prognosis. Tell your doctor what is going on. See a therapist. Hire help. Go for walks, Sit in a park. Do something to soothe yourself. Sometimes we feel that help will be too much trouble, that we can do what needs to be done easily enough but obviously YOU need help. This is hard. Very hard. I am glad you came here to vent but now take some action and call an agency and just try getting some help in. Don’t try to manage the care of your dying and demented mother without rest, hydration, good nutrition and help. Hugs
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Please don’t keep trying to have her admit or accept anything. It’s not possible anymore and only frustrating you both. Your mother clearly needs more help than you can provide, not that you aren’t doing your best, it’s simply too much for any one person around the clock. I hope you’ll look into options for more help soon
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IMO the one who needs to accept her limits is you, this is what dementia IS!
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You do not mention in your profile if mom has been diagnosed with dementia.
A lot of the behaviors that you list are consistent with dementia.
If this is the case mom does not "know" what she is doing.
I suggest that you talk to the Social Worker from Hospice or the Nurse and ask for Respite.
One of the GREAT benefits of hospice is that Medicare or Medicaid will cover almost 1 week of Respite each year. Take advantage of this.
If your Hospice does not have an In Patient Unit they will have arrangements with any number of Skilled Nursing facilities where they can place mom for respite. And you might consider leaving her there. There will be staff 24/7 that can care for her, Hospice will still see her. She will have to pay "room and board" at the facility but it might be worth it to save your sanity.
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"she is final stage kidney failure, here at my home, with hospice 2x week"

By kidney failure do you mean if not for hospice she would be on dialysis? The two people I know who were on dialysis, quit and went on hospice were gone in 2 weeks. The poison going into her system is making her Dementia worse. In my one friend she had no Dementia but ended up having dementia like symptoms.
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MichiganToOhio: You got the comments that caregivers frequently go before the people they care for.....also your health may or may not improve after she is gone. Please get some help now, take some of the stress off, and look after your own health as much as you can.

My stepmother passed before my dad who had dementia...she was 8 years younger. The stress of taking care of him had her abandoning any healthy eating, and she ballooned up to over 300 pounds, got some form of dementia herself (and/or finally just gave up due to the stress) and finally passed after her gastric bypass ripped and she got sepsis.

Looking after my dad, even "from a distance" last year when she was gone, I too abandoned my healthy eathing and exercise and gained 30 pounds. He refused to go to a home for the longest time...it was a 3 hour (one way) commute to his place for me. When I wasn't at his home, I was making countless phone calls on his behalf and arguing with him over the phone ("I remember what I want to" was his mantra). Between that and a 50-60 hour a week job and a husband was way too much. When finally his best friend admitted defeat looking after him (there literally WERE no local services as he lived in timbuktu), he finally agreed for me to move him into an adult family home.

There is a book called the 36 hour day. It's called that for a reason. PLEASE get some help for your own sake immediately. You can not give up your future for her present.
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I understand you wanted to bring her home for her final days. We did the same thing for my husband’s mother. It does seem never ending and if you are doing this by yourself, especially so. I’m going to pile on to the others and say get some help. You don’t want to burn out and turn this kind and generous gift you’re giving your mother into something you regret or something that hurts you and her.

Hospice should be able to help you out temporarily with respite care. Perhaps they can also recommend part time caregivers for when your respite allowance is used up. Or do you have family members that could spell you? I know from my experience I couldn’t have done it alone.
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WOW
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You wrote this in the post: "this all would be fine, but she has become demanding, requires immediate responses and help within seconds. She won’t wear her hearing aids anymore. She’s destroying my home, falling, causing so much anxiety. I’m a German Shepherd, always on alert. Always."

And then you wrote this as a reply to againxf100's comment when she stated that you need more help. Note -- others have also stated that you need help.

"...she is little trouble, yet. I am exploring overnight help if it progresses more during the night."

Sounds like you definitely help NOW. Why are you minimizing the effect this is having on you in your reply to againx100's comment?
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Your mom's behavior sounds very much like my father in the last month of his life. I was not the one living with him but advised my brother , who was living with him at that point and could not take it anymore, that we should talk to his primary care doctor about hospice care. There is an organization here in Florida , VITAS, that will give respite care all paid for by Medicare Part A if the Primary Care doctor refers them. Once your loved one is their program , VITAS will council you and will pick up your loved one for Respite Care so you can get a much needed break. The loved one may come home if appropriate but the situation is constantly monitored by VITAS and they will help you at home.

In our case, dad actually only had a few weeks left once he was in the program. I wish we had gotten him in it sooner , it would have saved a lot of grief for both dad and the caregiver and the Primary Care doctor only needs to certify that he believes the person is in their last six months.
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Medicate…
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Sounds like dementia symptoms exacerbated by her kidney failure . Mom will never be reasonable or lucid as her brain is poisoned with the toxins of metabolism waste that her kidneys can’t excrete anymore . Eventually she will not have this energy . But in the meantime she’s taking you along with her towards death . You need to stop taking care of her to save your own health .

Put her in Hospice at a facility where you can visit her and they can achieve a more constant result in medicating her and keep her more relaxed and comfortable . Some can not or will
not die peacefully with their child bearing witness 24/7 to them dying .
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Look up the definition of “Anosognosia”. Your mom may not be in denial, her brain disease has most likely damaged the part of her brain responsible for remembering these things you mentioned. I’m sorry.
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But, it will be over. Soon. You can endure. She can't change it. Just breathe, and go as far as you can. Your mother is in trouble. Just be kind. It will help you both, in the coming days.
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I'll tell you what, it's not that difficult to unseat a pocket door. And it sounds like your mother is a busy little bee. But in all kindness, and to be honest with you, it doesn't sound like it's your mother who's having difficulty comprehending what situation you are currently in. Getting your mother to admit the things that she's done and getting her to comprehend what she can or cannot do suggest that you think that she will remember or learn or change in the future. It's as though you have a two-year-old on your hands, and you expect that she is going to learn. That's where the misunderstanding or lack of comprehension lies. All that your mother has learned has gone away. She will not be learning new things. What you need to do is to learn to accept that. This is an extremely trying time in your life, and it is going to unfold precisely as it unfolds. You have to find a way to enjoy what you could enjoy in it and rack your mother's failures up to the disease process, rather than putting those things on your mother. Or yourself.
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Placing her in Memory Care or a Nursing facility sounds appropriate, please contact a Geriatric Physician to get Medicaid forms sent in or to Adult Protective Services through the hospital when you drop her off there and tell them she has no one to take care of her. Video her behavior to show the social worker. Just call 911 when she things get out of hand and ask them for a 72hour hold for placement evaluation.
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Does she have any diagnosis for dementia? Along with her kidney issues, it sounds like she has dementia. However you’d need a Dr to determine that to be sure.

If she does have dementia, then don’t bother trying to correct her or educate her, it won’t work. Dementia is progressive and it will only get worse. If it’s a true safety issue, she may be better in a facility that can watch her and keep her safe. As you are finding out, one person cannot do it in a regular home setting. It’s just too stressful and yes, it can ruin a home.

Or, if hiring help in the home to help with cleaning, errands, cooking etc, that may be some assistance for you, but it doesn’t come cheap.
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See if hospice can come in more often. Your Mom is going down with whatever fight that she has left. It sounds like she has no clue as to what she is doing. It will soon be over. Do the best you can. Try to get emergency help now until it’s over. You need sleep or you will crash. Call 911 if she falls or endangers herself or others, and insist that the hospital do a mental evaluation and keep her until they can balance her medication needs and transfer her to a memory care facility. Know that she may not make it through all this. Getting help now is crucial.
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MichiganToOhio: Unfortunately your mother's brain does not possess the capacity for logical thinking. You require help to be able to get some sleep as without it, you won't be able to function. Prayers and hugs for this most difficult of times.
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A couple of suggestions:
1 - more help to come in so you can sleep and do "me time" things: hygiene, eat, grocery runs...
2 - Talk to doctor about her demands which may be based in anxiety. A mild anti-anxiety medication could help her to relax more and be easier to live with.
3 - If 1 and 2 are not working, it might be time to acknowledge that she needs placement in a nice facility. Your needs must be met as well as hers.
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