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.
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.
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)))))))
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.
Yes, Rainmom, it is The Long Goodbye, Sigh.
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”?
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.
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
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 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.
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.
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.