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......
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
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.
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.
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.
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.
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.
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.
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.
Blessings to you for doing what you're doing. May you receive much peace in your heart and an ample amount of help.
I am getting some help. It might be ample and if it's not then I will add more.
Thank 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.
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.”
Can she go to senior day care or get an aide?