Is visiting my mother worthwhile?

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. 

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)))))))

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.

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.

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!

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.

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”?

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.

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

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.

I am not a tech savvy person but do you think one of those mp3 players or something like it might help her? Favorite music or even audio books?

Thanks everyone. She has no use of her left hand (dominant hand), so holding magazines and playing board games are out. She used to want to do crosswords (I would read the clues and write them down for her) and reminisce, look at photos, etc. TV seems to bother her, music too - not sure if that's a stroke-related cognitive problem or something.

I think she is depressed, and in fact has always suffered from depression. She won't even consider taking an anti depressant. Sigh. Ahmijoy, I agree that it's her life and I can only do so much.

I am pretty much her only visitor. My daughters see her once in a while, and there are the occasional visits from relatives who happen to be in town. She has 24/7 care at home and one of her caregivers is especially lovely and friendly. She would be happy to take her places, watch TV with her, etc, but my mom, again, just wants to lie in bed and do nothing. 

Xinabess, thanks for coming back on the forum and giving us an update. I think you are right when you say "I think she feels self-conscious about not having much to say."

Here is an idea. Start doing a family tree. Then you can ask your Mom questions about her own parents and her grand-parents. Bring in old photos of people you have no idea who in the world they are. This might perk her up as usually elders are a store house of family history with great stories :)

Oh how I wished I would have done that. I don't know the correct names of my Mom's grandparents so the family tree stops on both sides of her family. Their photos could be right in front of me but I have no clue.

My Mom's having trouble doing anything too. I can't get her interested in hardly anything. Sister 2 came by last week. She brought a new puzzle. (She has a way with Mom that fascinates Sister 1 and me to no end.) S2 told Mom: "I have a new puzzle but could you help me? I don't have time to get it started. Could you just help me find the edge pieces?" S2 opened the box and had a bowl for the edge pieces. "I would really appreciate your help."

Mom spent hours going through the box and pulling out edge pieces (though she lost her focus and started pulling out all pieces, but that's beside the point). The puzzle box is still here and occasionally I've asked Mom to help S2 out and she does!

It's hard, xinabess. Hang in there.

Could you bring cards or a board game to play with her? Or a magazine or two to look through? You said she enjoys hearing about people in entertainment. “Living” is a relative term. Perhaps she is not living the way you think she should, but on her own terms. She may reason that she’s had a long and sometimes difficult life and she may be living exact,y as she wants to now.

Yes it is worthwhile to visit. She sounds depressed to me from what you said. Maybe you can bring her favorite takeout in to her, find funny tidbits to share and just carry the conversations. I would talk to her doctor, isolation can cause very strange mental shifts and cause depression. You say her apartment, what kind of care does she get, 24/7? Are you and your children her only visitors? Please have her checked for depression and do not listen to her, you should go. Maybe, she sees you feeling awkward and it is to much with all she is dealing with, just a thought.