Is visiting my mother worthwhile?

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Hi all. Haven't been here in a while. My mom is 85 and has had 24/7 care since a stroke almost 2 years ago that left her paralyzed on one side. At first, she was able to sit in the wheelchair for a long time, wanted to go out to eat when possible, and was chatty and wanting me to Google certain celebrities and read about them to her. She's slowly become less enthusiastic about all of that, and her short-term memory continues to get worse. She used to want visitors. Lately, she never wants to get out of bed or do anything, really. She says she is never bored (she is "cogitating") nor is she depressed. I am an only child and visit her 2-3 times a week, but lately she doesn't have much to say and, in fact, seems kind of stressed about feeling like she has to engage. Even if I or my kids sit there quietly, she'll say maybe we should go. I think she feels self-conscious about not having much to say. Today I asked her if she ever thinks about dying and she said no, why would I ask such a ridiculous question. She has a tremendous life force and has bounced back after so many illnesses and personal tragedies. I don't think she actually does think about or want to die, yet she is definitely not living. I'm not sure whether to keep visiting her or just call. It takes me a while to get to her apartment. I will visit her, but maybe not as often. It seems somewhat stressful for her.

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How do we prevent ourselves from getting to this place and causing our own children/loved ones this pain? I think about this a lot.

Cwillie, I totally understand what you mean by the semi-comatose crowd in the common area of the SNF, and it's nice that your mother is OK with that and sharing a room - really.

That scene was, to me, a horror show. There was a woman who pulled down her pants and played with herself, a drooling man, and a woman who lay there in a stretcher, half-dead, parked right near the TV all day. My mother called me literally 20 times a day to get her out of there. I am incredibly lucky that I was able to get her 24/7 care in her home, fully covered by Medicaid.

I actually took a photo of the common room at the SNF and told my kids that if I am in a situation like that, please roll my wheelchair into oncoming traffic.  I'm not talking about nicer AL places, and I know that there are people who enjoy/tolerate the SNF, but I will do anything to avoid being in one of those places. 

I hope I have not offended anyone, but having seen that place, I want to write an advanced directive stating that I cannot be in one. 
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Xina, thanks so much for coming back!

Two things, the brain damage that results in vascular dementia seems almost always to be linked to depression. Antidepressants made my mom's journey with dementia more bearable for her, I believe. I didn't tell my mom she was getting antidepressants; as her health care proxy, I agreed to them while she was in rehab from the stroke.

I visited my mom in the NH weekly, sometimes every other week. I learned to take an hours worth of material with me-- stories, Facebook posts, hand lotion, emery boards, cappuccino, muffins. I usually wheeled her down yo the lake to watch the ducks.

It's so sad, and hard. ((((((Hugs)))))))
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Xinabess, my mother is even less engaged than yours is and she has been that way for years, although I've discovered there are still degrees of almost completely absent because when I thought she had reached the bottom she continued to deteriorate even farther. But even so she derives some comfort from being around other people, when I asked she said she has no interest in moving to a private room and given the choice almost always asks to be left with the semi comatose crowd in the NH lobby/TV room after I leave.
I know it's hard to visit, I suggest that family and friends come as a group and visit among themselves with your loved one just listening in, that worked for us while my mom was still at home. Now sometimes I will just hold her hand while I read a book, or you could play music or an audio book while you knit if you are into that.
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I'm sorry, I didn't mean to offend anyone. Honestly, I'm jealous of those whose parents are more engaged. I guess I do just need a cyber-hug - or someone to help me take care of her! My nerves and heart are frayed. I know you all understand that.
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Xinabess, every poster here is an individual with their own ideas and issues. It’s easy for us, even and especially if we’ve been through much the same experience to generalize and say do this or do that. Perhaps you just need a cyber hug and not really advice. That’s absolutely fine. My own mother completely disengaged socially when I placed her in a SNF. She also was a breast cancer survivor and suffered from constant UTIs. But I would never presume to compare your mom to mine. We here do, however, understand how you feel even if we are not privy to the minutiae of your life and relationship with your mom. We are only showing our concern for your situation and our desire to help you. Please know that we are here for you for whatever you need and whenever you need it. Open 24/7!
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Thanks again, everyone. I saw my mother today and she enjoyed the peanut butter cups and Dr. Pepper (!) I brought her. I showed her a few pictures and sat with her quietly for a while. I know you all mean well, and that it's hard to understand the nuances in these posts, but she genuinely has no interest in any "activities" or socializing with new people in a facility. The time she spent in a nursing home was nightmarish for us both.  All of her friends are gone, and meeting new friends at this point is not her thing at all. I truly envy those of you who have parents that participate in meaningful activities and have healthy, constructive impulses. It is best for my mother that she is at home with an aide, but I wish she were more engaged. She was SO much more eager to go out, get her hair and nails done, and be in the outside world a year or so ago, but all that has stopped. She is 85 and has had breast cancer, a stroke, a broken vertebra, sepsis that almost killed her, and 3 UTIs that required hospitalization in the past 4 years, so who could blame her, honestly? She's wrung out and I get that. She doesn't seem particularly unhappy and refuses to talk about dying. I'm the one who is desperately trying to amuse her and keep her engaged, and, well, alive. I think it's all way harder on me than it is on her. Why is it so hard to accept this when we all know that this is what happens when people get old? There's the rub!

Yes, Rainmom, it is The Long Goodbye, Sigh.
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Hey there, xinabess! Good to see you again.

I asked myself this same question in the last several months of my mothers life.

Mom had had pretty much stopped talking and usually- regardless of what time of day I visited - I would find my mom asleep in her recliner. But not always.

On the visits when mom was awake but not speaking, I would keep up the “conversation” talking about things she use to enjoy talking about.

One visit sticks in my head. To my surprise I found mom in the activity area where they had an old movie on. Mom wasn’t really watching so I tried quietly to talk to her. Nothing. So after a while I asked if she wanted to go back to her room and take a nap. She said “yes”. As I was tucking her in she grabbed my hand and said “you’re my daughter”. I realized that until that moment she hadn’t known who I was.

On the days mom was asleep I still stayed for an hour or so, staying busy by tidying up her room, reorganizing her closet- the staff was not great at putting her laundry away - and taking inventory of things I needed to bring the next visit.

I did did cut my visits back from twice a week to once a week but I still made that weekly visit religiously.

I did it for myself, I guess - at this point. To me, it was important that I still visited as it’s what my beloved father would have wanted and I believed it was - for me - the right thing to do. It also gave me time to adjust a bit to the inevitability that was ahead. Wasn’t it Nancy Reagan
that called it “The Long Goodbye”?
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I'm thinking along the same line as Isthisrealyreal, perhaps life would be better for her in a facility. I remember you moved heaven and earth to help her remain at home, but at that time she seemed to be in denial and expected to recover enough to resume her former life. An appropriate placement could provide her with something else in her life other than her few caregivers and the four walls around her, even if it is never anything more than passively observing the other people around her.

In the meantime, I find it helpful to visit my mother at meal times, the act of helping her and comments about what is on the menu can give purpose and focus to my visits.
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Your mom kind of reminds me of my favorite great aunt. I used to visit her after school and on weekends - she and I knitted together and watched TV together. After a mild stroke - she withdrew and often suggested i go home early etc. I think she felt that i would be bored if we could no longer interact as we used to.

My mom talked to her and asked her if i could continue to come - that it helped my mom knowing i was safe while she was working and could i do my homework? My aunt agreed as she felt useful. She enjoyed baking cookies - we would do that together sometimes and i would do homework. (she no longer could knit).

I started asking her about family - as i was working on a geneology project. She was wonderfully helpful and I'm so glad i did.

You love your mom and i think she needs your visits. You have been given some good suggestions here. Good luck
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Xinabess, does she take any meds? I ask because you say she won't take antidepressants, maybe something natural, approved by her Dr. Could be added? Just a thought.

How does she feel about assisted living? Some people love the company of their peers, my dad complains that "this place is full of old people and all they do is sit around and watch tv" as he is looking at his 1pm tv program. What?!?! He has actually told me that he needs to go, it's time for his program. He can be alone if he wants or he can visit with residents. Unfortunately, he chooses isolation mostly, he does eat 3 meals a day with the other residents and maybe for him that is enough. Could it be time for mom to be reevaluated? I'm just throwing things out there, you are probably way more experienced with this than I am. I just know how confusing it feels to me when he won't engage.

I pray you find something that makes the visits more enjoyable for both of you.
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