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.
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.
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.
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 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.
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.
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