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I can barely converse with my mother. She doesn't usually understand me or hear me or respond to me and it has almost totally killed my ability to converse with her. It's just too frustrating to me. It's like talking to myself - which I don't do. I hate repeating myself - like way before dealing with dementia, it's always been annoying to me. I know I "should" be nicer but I just can't make myself chitchat when I know how it's going to go. As in, badly.



When I have to drive her half an hour in the car to an appointment, I literally have NOTHING to say. I turn up the radio a bit and sing along. She naps or sometimes sings too.



Today we met with the geriatric doc to review MRI results and her recent dementia diagnosis. The MRI was unremarkable - atrophy present but no evidence of stroke, tumor, etc. But her behavior screams dementia and we've tried a bunch of things like blood work and med changes and CPAP (which she could not do due to dementia).



Thankfully the doc told mom no more driving. I've passively been making this happen anyhow - my car is on loan to someone so we only have hers to drive and I have all the keys which I don't think she knows. So, it's been a couple/few months. She was mad! Told doc "I do not agree with that!". Was clearly agitated. Told me she wanted to go home. But we were not done so....



Yes, I know I have some burnout. I already have some caregivers coming to the house to help. I'm out of the house a lot so I don't feel comfortable leaving her for that long though still seems OK. She just doesn't usually take her pills or do much of anything if no one is directing her.



And a family member is being really unsupportive. Says I'm being so negative. Gee, there is nothing positive in this situation so excuse me!



Rough day......

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A few suggestions:
1) The family member who says you are being ‘so negative’ needs to come and do your job in your house for at least a weekend. If they find it easy, they can take it on for longer, or more regularly. If they don’t like it, they can join you to help out with what comes next.
2) I assume that she won’t use hearing helpers. Stop expecting a conversation with her. It isn’t going to happen. You can talk to her, and you can ignore anything she says back. She may be quite happy with the impression of an interchange, whether it makes sense or not. If she wants to talk about nothing for a long time, put in ear plugs.
3) If she is safe and you are doing all you can, forget the guilt. Your mother naturally wants things to be back the way that they were years ago when she was more able. You don’t have a magic wand, stop appologising or blaming yourself because you don’t.
4) Think carefully about other facilities where carers would not have your expectations, and could meet her real needs.Then you could go back to being an adult, doing the best you can for your mother.

Best wishes, Margaret
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I am posting in support of all you do for your parent. I read a lot here but don't post much. I hope you have a great week ahead and if it gets intolerable, I hope you know there are those of us out here doing hard things right along with you. Hang in there.♡♡
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There are different levels of supportive living facilities, and I think now it's time to look in to that option for your mom. She will be monitored and kept safe, and they can evaluate when she requires a higher level of care. Notify her doctor of things she's unable to do for herself so it's in her medical record. Then start searching for a facility for her!
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I feel your pain. My mom has fully functioning hearing aids, which she can hear quite well with, that she doesn't wear. When I ask her to put in her hearing aids, she gets angry.

Since she is usually pretty lucid until evening hits, so I try and have conversations with her. It's exhausting! I actually get tired from having to yell constantly. Sometimes I just make a casual comment in passing, like 'the sun is shining today' and she'll ask what I said, so I repeat it louder...several times. By the time she hears what I said, she claims I'm yelling at her and don't have to be so crabby. So, I too, tend to avoid making chit chat because it is just so exhausting! It's so much easier to just avoid the whole thing.

I know this post isn't any help, but I completely understand your frustration.
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Hardest job I never wanted. My 95 yo mother lives with me and has a diagnosis of dementia. She comes and goes between reality and confusion. I'm not a big talker to begin with and it takes a concerted effort to try and engage my mother in any sort of conversation. Most conversation involves made up people or people from her past.

It's also very difficult to never be negative when caregiving 24/7. I totally understand.

The days that I don't lose my patience are good days.

The nights when I only have to get up once or twice to escort my mother to the bathroom are good nights.

When I can get her into the shower without resistance is a relief.

And on it goes. I don't understand the caregivers who never get stressed out and are always happy.
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When the rough days outweigh the good ones, changes need to be considered Again. Adult daycare, more in home caregivers coming in, or placement. In addition to burn out, compassion fatigue is a very real thing; Google it.

Compassion fatigue is a term that describes the physical, emotional, and psychological impact of helping others — often through experiences of stress or trauma. Compassion fatigue is often mistaken for burnout, which is a cumulative sense of fatigue or dissatisfaction.

Symptoms of Compassion Fatigue:

~Feeling exhausted physically and psychologically
~Feeling helpless, hopeless or powerless
~Feeling irritable, angry, sad or numb
~A sense of being detached or having decreased pleasure in activities
~Ruminating about the suffering of others and feeling anger towards the events or people causing the suffering
~Blaming yourself and having thoughts of not having done enough to help the people who are suffering
~A decreased sense of personal and professional accomplishment
~A change in your worldview or spirituality
~Physical symptoms, including sleep and appetite disturbances, nausea and dizziness

Others can tell you until the cows come home how you 'should be acting' and yada yada. But when you simply cannot drum up that 'pleasantness' you feel you SHOULD but DON'T have inside you anymore, THEN it's time to look into other alternatives for mom, whether she 'wants' them or not. There are TWO people involved here, not just her. Your life and the quality of it matter TOO, not just mom's. Managed care gives HER others to hob-nob with all day long, social activities, meals served, meds managed, etc etc, and oftentimes, those facts are not taken into consideration. Only the negatives are thought about as in "OMG I'm ABANDONING my mother" which is sheer nonsense. You can go see her every day if you'd like! Be a daughter again instead of an overworked and irritated caregiver who's on her last legs. Where is it written that that's what you HAVE TO DO? Nowhere.

And if your unsupportive family member has so much negative feedback to share, then let THEM take mom in! They will see in short order what caregiving really looks and feels like, firsthand, and then YOU can call THEM to talk about 'being so negative', while sipping a pina colada from your patio. Armchair critics are the absolute WORST!

Wishing you the best of luck looking into alternate care arrangements for mom now.
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againx100 Mar 2022
I am doing a lot to maintain my quality of life. It's just harder because she lives with me. I babysit my cutie pie grandkids a lot and that brings me soooo much joy! Then I come home to a difficult situation. I have lots of things to catch up on. I want to watch tv, read my book, relax. I do this but not nearly as much as I'd like. I also spend a lot of time coordinating things for her. I exercise. I have already drawn my line in the sand about how much I will do for her. I've said "no more" to myself which is why I started hiring caregivers (with mom's money, of course).

If/when she needs to go into a nursing home or memory care, I would not feel like I was abandoning her. BUT that's what she will feel (if she's still cognizant enough). I look forward to the day I can be just her daughter again.
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Our attitude when caring for someone with dementia or not, is up to us. Yes, it is a choice we all make. Sounds like your choice has been to be negative, and to me that means you're either really burned out or you're just not cut out to be a caregiver. And that's ok, not everyone is.
But when you come to the realization that it's just not for you, it's then time to look at other options for the one you're caring for, like looking at placing them in the appropriate facility where they will receive the care they need, or hiring full-time help to care for her in her home, using her money of course. And if she can't afford it, then you will have to apply for Medicaid for her, so they can help her.
You do have options you know. You are not the only solution, so start looking into what exactly those options are today.
I wish you well.
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againx100 Mar 2022
Thanks for responding.

I don't think that I chose to be negative. It started out fine and then inch by inch it's gotten worse and worse. Starting way before her dementia diagnosis. Of course, long before the diagnosis, there are years of things that happen that are bad and the damage to our relationship accumulated to be what it now is.

I have hired some caregivers. This will increase as needed. I know she prefers to continue to be in my home (over 6 years now). I think it's viable for some period of time, limited by how quickly her dementia progresses and in what fashion. I assume some things would be more tolerable than others. But when it's too much, I will have to have her placed somewhere. I already know that best place in my area.
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Would doing an activity together be easier? Doing a simple puzzle, playing a really easy game, folding laundry, having her help you bake something, looking through a photo album or magazine or picture book together, etc. I find it so much easier to be together with my mom if we are doing something as opposed to just sitting there trying to talk.
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againx100 Mar 2022
Thanks for the great suggestion. I will try to incorporate this into our world. I'm very busy BUT there are days when it's not so busy so I could offer to do something with her. There are challenges to every activity you mention as examples but I guess I could give it the old college try.
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I didn't converse with my Mom and I am a talker. When she talked, it was whatever flitted thru her mind, non-sensical. When I tried to answer her she was on another subject. Sometimes she would ask me what I was talking about. My DH asked me why I wasn't answering her and I said because she is not holding a conversation. She is just rabbling.

My daughter would come over and sit on Moms bed and talk with her. I asked what did she talk about, nothing really. She just let Mom take the lead and gave her short answers. "Nice, oh yeah, I guess so MomMom" My Moms eyes lit up every time my daughter was here. Of course, my daughter did not deal with Mom daily.

One day my Mom was rambling and I was on my tablet. She said "well, I guess no one is listening to me" a lucid moment.
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againx100 Mar 2022
Thanks JoAnn. Sounds like you can't have a convo with your mom either, on a different level, of course. That's nice that your daughter can "talk" with her. But I guess it's not really much of a convo, realistically speaking. It's much different to pop by for a certain amount of time and give 100% to be where the patient is. But when it's your LIFE, I can see no way to do that.
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For me, interacting with my 92-yr old mother who always had a challenging (and negative) personality... I choose to treat her with the same mercy I'd want for myself if I were in her shoes -- and I may be, one day. I look at her annoying behaviors and attribute them to "that bastard dementia" and work on having peace in my heart that I'm doing as much as I can to protect her and advocate for her, but it just won't ever "improve" or change her life's trajectory so I'll make it as good as it can reasonably be. That's all I can do. That's all anyone can do.

Blessings to you for doing what you're doing. May you receive much peace in your heart and an ample amount of help.
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againx100 Mar 2022
I envy you - I don't think I am wired for this mercy thingy. Maybe I'll have an epiphany some day. That would be nice. Really. I do do what I can to protect her and advocate for her. I stay on top of a lot of things for her - meds, bills, health care, scheduling caregivers, etc.

I am getting some help. It might be ample and if it's not then I will add more.

Thank you.
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I feel your pain. I can say that usually signs of dementia besides behavioral changes include physical findings on MRI reports indicating global atrophy. However, I am sure your doctor has discussed that with you.

First, I want to commend you for your support. Although everyone's caregiving story may be a little different, the journey remains difficult.
I believe most caregivers are in a state of shock, adjustment, disbelief and adjustment - if possible. Based on your (the caregiver's) support system determines how quickly you can adjust to a new stage of dementia that your loved one is experiencing.

I personally do not have a support system with my sibling. I rely on momentary support from paid caregivers in the home which is financially draining. Unfortunately, finding a GOOD paid caregiver is like searching for a needle in a haystack.

Caregiver burnout should be a "diagnosis code". Too many of the caregivers are being ignored.

I hope you find solace. I hope you find time to care for yourself. I hope God provides supportive people around you to give you the boost to keep helping your parent when the "chips are down". I hope your mother appreciates you.
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bundleofjoy Mar 2022
such a sweet answer! :)

courage, terrag and OP.
it’s toughhh.

terrag, you wrote:
“Unfortunately, finding a GOOD paid caregiver is like searching for a needle in a haystack.”

yes.
and many are good actors. you hope it works out. and they turn out to be thieves, etc.

many hired “care”givers take advantage of vulnerable, elderly people.

i wish everyone to find good ones.

“Caregiver burnout should be a "diagnosis code".”

yes.
let’s listen to our wise bodies. sometimes our bodies are clearly screaming for help, “hey, don’t forget me.”
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Well, you know the ebook that Lea recommends plus these teepa snow videos, but some of us aren’t cut out for it.

Can she go to senior day care or get an aide?
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againx100 Mar 2022
I am having some aides come in now. Starting slowly and will add more as needed. I would love senior day care to work, but it's not a very viable option since the closest one is half an hour away.
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