My mother is 92, probably in the end stages of dementia, living in an excellent nursing home which is 1,600 miles away from where I live (this was her choice when she was selecting her retirement home). Her physical condition is rather good but her mental status, not so much. Because of her history of being strong and active but extremely confused, agitated, trying to escape the facility, violent/hitting, combative, etc. we had to bring on 12 hours/day, 7 days/week private sitters. She spent 2 weeks in a psych hospital last summer to adjust her meds but everyone agrees that only made a minimal change. I also pay a geriatric care management agency who sends various people to check in on her physical, emotional and social well-being 3 or 4 times weekly; depending on whose day it is to visit, it's either a nursing check, a social visit, or music therapy.
My brother lives a couple of hours away and goes to see her once a month, as long as his health permits; he's not well either.
Around the beginning of 2023 she began losing weight over a period of several months. As it turns out, it's because her dementia has progressed to the point where she can no longer feed herself. So, we added to the care plan that the sitters are now to assist with feeding and her weight loss has stabilized; she may even start re-gaining. During that time period she was accepted by hospice due to the weight loss which gives her yet another level of care.
So, I have no worries over whether she's being well-cared for. My guilt arises because every visit I make is one that I increasingly dread. My mother and I have never had a warm relationship; she was hyper-critical, demanding, and self-absorbed. She was a difficult person to like, although I felt that as her daughter, I should love her. She was difficult in her younger years and is still a difficult person now; even though of course now it's the dementia that gives rise to a lot of these behaviors.
I'm not sure if she knows who I am. People tell her, "Look, your daughter is here," and she smiles but I don't know if it's because she recognizes/remembers me, or if it's because she's evidently got a daughter and that daughter is visiting. Her verbal ability is fairly low now; she hasn't addressed me by name for over a year. Asking even yes or no questions stumps her. Sometimes she'll answer with a vague generality of "we should do whatever it is we should do" or "I don't know" or sometimes she just strings a garbled word salad together which makes no sense.
Her "good" days are when she's active but confused, pacing the halls, trying to escape the unit, shushing me if I attempt to speak to her or to passers-by. Or she'll sit staring out the window for hours without any interest in interacting with anyone. Her "bad" days consist of sleeping pretty much all day and then striking out at the nurses and aides when they approach her with food or meds.
In the past I've visited quarterly; Every 3 months. When I visit, because of the 3,200 mile round-trip distance I have to fly, which I despise; it takes all day due to layovers. I usually stay 3 nights and spend the entire days, from 8 AM till 5 PM with her. Just like a job, which it is.
With her condition deteriorating - she's sleeping more, eating less; and hospice has accepted her even though she's got no terminal condition other than old age and dementia - I'm hopeful that this journey may be drawing to a close.
My dilemma is, how often should I continue visiting when they're such unpleasant visits? They do nothing for me, but if they do something for her, then that's a reason to continue.
Yes, very young and not unaware of how lucky we to have been able to do that. No kids, good job.
No regrets. Most people on their death bed, so I understand, say that what they wished they did differently is not spend more time at work but to spend more time with their loved ones.
Maybe there is something in your papa that knows you are there when you visit. It’s invisible to us. Who really knows. It’s good you are there for him.
I don’t know if this will be helpful to you. I am 58 and retired 3 years ago to be “on call” for my parents. My husband retired 5 years ago for the same purpose and he is 61.
My dad just died one week ago, quickly and , ostensibly, painlessly. He was never the issue. My 85 yo mother is the issue, as it seems with many posters here. She is blind, immobile, belligerent, began to show signs or early dementia, refuses any outside help for comfort, expects that my hubby and I will do whatever it takes. It’s only been one week, and we are feeling our way through this dark maze, learning day by day how to be.
So, what does one do?
What I am learning is to take each hour as it comes. Yesterday, reaching a really low point and talking to hubby, I am being intentional in changing my attitude of “dread” every time there is a groan from the bedroom to “embrace”. I hope it works.
Getting back to guilt, what is helping me deal with any guilt is asking myself: “Have I done all I can do in this situation today to make sure my mom is cared for and knows that she is not alone? If not, what else can I do?”.
This has given me some perspective on guilt to have no regrets after she is gone.
Also, recommending a fantastic Chilean documentary”
”The Mole Agent”. An 83 yo recently widowed man goes undercover into a nursing home with agency hired by a daughter of one of the residents. I am still not sure how they filmed this. It’s available on Kanopy the library video service.
Time to go, mom is beginning to wake up in pain. I am embracing it and being aware of the butterflies in my stomach that are beginning to fly around.
Wow you were young to have retired, That’s a big sacrifice. I was 65 when I did it for precisely the same reason. My folks were over 90 when I pulled the plug on my work career. Sometimes I wish I didn’t.
But it did trigger a helpful memory. I haven’t visited my mother (30 minute drive) in over a week. So the guilt is building. Years ago, when she still had periods of lucidity, she informed us of her nursing home of choice (she had visited people there many years earlier) in the event that she needed care. (when she did, she demanded I be her only source of care) I tried to dissuade her as it was 300 miles from us - an especially bad drive in the winter. We’d rarely be able to visit. If she’d only consider something closer... No, it was there or nowhere and if I couldn’t visit, oh well.
The logical part of my brain says I should ditch another chunk of guilt.
I made good contact with staff when mother first moved into a facility, and kept close contact with the staff who cared for mother by phone mainly, and some texting, and they kept me informed as to how she was. Family/friends visited occasionally as well. They never found anything out of order.
The most important thing to me was to be sure she was in a facility that was well run and offered a very good quality of care. That combined with making my presence known worked well for us. I don't think for a minute that mother would have been better cared for if I visited more often.
That is not to say I disagree with frequent visits if they work for you - of course not. More power to you.
I had to count the cost to me vs the benefit to her.
I was POA and then executrix and looked after all her affairs, arranged for her cremation and burial service (across the country where she used to live as according to her wishes) but did not fly there to the funeral. -not that that made any difference to her, but it did to me.
In my view, you have gone the extra mile and then some. When I got the word that mother was dying I flew down and saw her but due to extreme weather conditions (yes even in the city) was not able to be there a day later when she died. I was OK with that.
It sounds like, understandably, these trips are hard on you and I know they are expensive. I understand the increasing dread. My view - give yourself a break. You have looked after your mother's needs enough. She is being well cared for (mine was too) . Soon enough she will pass and you will have additional duties. Let your next trip to see her be the last one. Just my two cents worth.
But the real trouble is the other side of the coin. When - and may it be at her proper time - she does pass away, if you've done the sensible thing and not put yourself through these arduous and seemingly pointless journeys, how confident do you feel you won't then beat yourself up about having failed in some part of your duty? It isn't that I or anybody else think you will have something to regret, and why should you care what anyone else thinks anyway, it's a question of being sure that you won't think so.
if it were you, what would you want? If you were a mother, what would you want your daughter to do?
If I were a mother, I'd appreciate it very much that my daughter visits. Let's say I'm 60, I have a daughter. I'd tell her, "If ever I get dementia and I'm in a NH, I'd appreciate it very much if you visited me. Since we don't know what the future holds, like maybe I'll have dementia, and be very difficult and show no appreciation, I want you to know now already, that I'd appreciate your visits. You must do what's good for you, you have your life too. If, when, you have time, yes please continue visiting me."
OP, there's also the factor that your Mom was difficult towards you your whole life. You'll have to weigh all the factors.
You decide, so that you have no regrets later.
I'm not saying that's what you should do. It all really depends on how meaningful the visits are for her, and what positives these visits bring to you both, if any. If there are enough positives, then it's worth it. I have relatives that experience so much discomfort over visiting her that they avoid it altogether, and use those negatives as further excuses not to go. It makes me (and my mother) sad.
To me, it doesn't make much sense to keep traveling back and forth, especially since these are perilous times for air travel and disease. Don't put yourself at risk.
And you have no reason to feel guilty. Her mind is gone. That's what tied you to her, not her aging and sick body. If your minds can't engage, it's over.
My deepest condolences on the loss of your mother. And BTW, I went through something very similar with my mother. I spent my "visits" doing the backbreaking work it took to clean out her attic, closets, and storage units and haul it away. She had no idea who I was or what I was doing there.