My mother is 95-years-old and living in a locked memory unit in an assisted living facility. We were close for many years--my whole family was close but now half have died and others are uninvolved in her care and her life, for that matter. If my mother was in her right mind, I'd go to see her every day at the facility with pleasure, eat lunch with her and sit around gabbing for a while. That is what we did together for years, through all of the other deaths and traumas in our family.
But it's not like that now. I drive into the parking lot of the facility with a feeling of dread. I go in, make small talk with the receptionist, sign in the reception book, name, date and time and then, with a feeling of dread, proceed to the locked unit upstairs. When I push the door open, the smell hits me. Sometimes there is a mentally ill woman walking up and down the halls--she may or may not follow me. I get to my mother's room--she will be: knocked out with xanax and asleep because she's been yelling for help all morning and crying that her family doesn't love her and never come to see her; sitting in her wheelchair, yelling for help; sitting in the bathroom, where she suddenly becomes helpless and I have to pull up her pants and tell her yes, you get off the toilet now and back into your wheelchair, something she knows to do when I'm not there. After it's established that I'm there and who I am, she starts complaining and, asking for Tylenol. Dozens and dozens of times, over my "visit." Literally, one time after another. Can I buy some Tylenol, can I give her some Tylenol, do I have any Tylenol, where do I get Tylenol, I need some Tylenol, etc. Then we sit or roll the wheelchair around, she has to go to the bathroom every few minutes- then it's a repetition of the above by her-- do you have any Tylenol, I need to pee, I need Tylenol, I need to pee, I need Tylenol, etc. on and on and on. That is our visit. Then I sign out and I am depressed the rest of the day and cannot sleep that night. In five minutes, she has forgotten I was ever there.
Sorry for being so wordy, but here is my question--what good is this doing anybody? I go from a sense of guilt and duty but the person who was my mother is gone. It is like an ongoing nightmare. I know I will get the call one day that she is physically gone as well. Should I keep trying if it means almost nothing to my mother and makes me a mental and emotional wreck for several days?
Thanks for any insight.
All I can comment on is what I've experienced personally. My mom is now passed but I remember those days that you have described so well. It was so painful to visit my mom but if I didn't I would feel so guilty that I just made myself go. There were many times I would visit and my mom would just be sleeping. In fact most of the time. All she did was sleep. When I visited she would reluctantly get herself up and we would visit but most of the time I think she just wanted me to leave so she could go back to sleep.
All I can say to you is keep visiting but maybe don't stay as long and when you do visit just remind yourself that this is love work. One day when your mom is no longer with you you'll think back to this time and feel glad inside that you made this sacrifice for her and even though she can't show you I bet that she knows you are there and loves you for it.
Those days when my mom was" there" in the moment with me made up for all those times she wasn't.
One other thing I thought I'd mention is the fact that she is constantly asking for Tylenol and needing to go to the bathroom. While I certainly understand how folks with Dementia do get onto the never-ending loop of asking questions, but have you given any thought of whether she might be having legitimate pain, or issues with a possible UTI? It would be certainly easy enough to have her checked for a UTI, and unless there is a medical reason not to give it, maybe adding some regularly scheduled Tylenol into her medication regime might just prove that she is hurting some, and who knows, it might just help to relieve any pain she is having.
As for how you are coping, I sure am sorry, it must be terribly difficult for you to see your Mom decline and you cannot do anything about it.
You are a wonderful daughter, and you need to give yourself a break because you deserve it! Remember, No Guilt! Take Care!
You’re very welcome. You’re not alone. Vent anytime. Hugs!
I would never ever want to lose my mind, become crazy and be locked up in some facility. I hope in the future the law will allow someone to put me out of my misery if I become like your mother.
I hope and pray that my mother will pass before she loses her mind completely.
So sorry Cedarlove. I hope a peaceful end will come for your mother soon and release her from this hell.
Have you looked at other facilities in the area? Don't let them give you the grand tour of the select rooms/floor plans. Ask to visit the exact floor she would live in to determine atmosphere. Perhaps a change of scenery would help to make these sad visits more enjoyable for you.
You don't have to visit so often, or maybe if you can go at another time of day it will help. I don't have any easy answers for you. I wish I did.
My family physician told me that people my age (85) should not be on Xanax. I would talk to her doctors about changing that prescription. The horrible, sad, awful news is your mother, as you knew her, is gone, her mind will never come back. Save yourself.
I understand every word you mentioned above. I am living that life, I take care of my mother with moderate Vascular Dementia.
We have lived in the same small house forever and every room is on the main floor, and she forgets where the bathroom and bedrooms are. She needs assistance in everything (everything) especially toileting and wiping. This is a 24/7 job: cooking, cleaning, laundry, running errands, distributing medications & vitamins, ordering supplies, bathing & dressing her, arranging & taking her to doctor appointments, completing health insurance paperwork, taking care of any wounds, exercising with her physically, playing activities with her to stimulate her mind, music therapy, art therapy, looking after all her plants, dying her hair & trimming it, manicure & pedicures, responding to her questions repeatedly, having her fold small towels napkins tissues into perfect squares because she wants to and it keeps her hands busy, taking her to the bathroom throughout the night (no sleep) watching movies like The Sound of Music, Annie and The Wizard of Oz “constantly” and I mean constantly because she does remember those movies and likes them... also Little House on the Prairie. Even when I’m sick and don’t feel like getting off the couch under my blankets I have to, there are no sick days off here. There are great days and not so great days. I’m grateful that she can still enjoy events, parties, dinners out...even though once she’s done eating she’ll remove her top dentures and place them on the table! I have learned to let a lot of harmless things go and no be embarrassed anymore or care what other people that really don’t understand the disease thinks! There are rewarding experiences as well, I learned to have a tremendous amount of patience and understanding, and read a lot on this disease. I’m sorry for rambling on.
She “is” still your mom, this horrific disease is slowly taking over but she is in there, a hug, a touch on her hand and a shoulder, a kiss on her forehead, and she’ll know she’s loved. They may lose reasoning, judgement, understanding, mobility, sight, hearing, taste, even smelling BUT they’ll never lose emotion.
Good luck to you and your family, you are a very good daughter.
She is now gone to be with the Lord, but I look back and regret the times that I was tired and wanted a real day off for myself but had to go tend to her. If I could do it again, I would have a different perspective.
Your situation is different, but try to make the best of it and learn to love every moment if possible. You don't want to live with regret.
Have a blessed day.
Take care.
I know what you mean about the smell hitting you once the doors open. I know what you mean about the dread. Humans must be the only creatures on earth who have to endure this barbaric behaviour
and what about those of us who cannot move forward with our own life and have peace until it’s over?
Cedarlove. Don’t visit so much. Your mother doesn’t know and nobody’s watching or keeping score. You have to flip it around and restart your life. If your mother is 95 I’m guessing you must be at least early 60’s. It will be hard to let it go but you must have things you want to do so start slowly and start breathing
Sometimes, I think they feel it’s a burden instead of a gift. Guess it is a gift if there is good health but for someone struggling it is a burden for them.
I don’t want to live that long.
Some Parkinson’s patients do have dementia. My mom didn’t show any signs of it. Her brother who also had Parkinson’s didn’t have dementia either.
For me it was hard watching her decline physically which of course became frustrating for her.
They are no longer the parents we once had. You grieve before they die.
I visit quarterly, mainly to check in with staff to see what she needs - toiletries, clothes, take things home they don't want there anymore because she's taken them apart or off the walls. In the intervening months, I'm sending postcards and greeting cards weekly, with really sweet messages on them. I'm hoping someone will read them and get a fuzzy feeling. On my postcards, which I hope the staff read, I talk about how great my kids are and how we have gone out of area for yet another soccer tournament, or how great so and so is doing who lives whereever, and how their kid just got married. Things I hope the staff reads as excuses as to why I'm not there.
Why do I hope these are read? Because in the back of my head, I think the staff and others who might come upon these are judgemental, because my mthr certainly was. I know I can only take so much, and a visit by myself is out of the question. A visit with hubby is merely painful for a night or two, so I can manage that once every three months. I'm sad I can't be there more, but I have to take care of myself and my children. These cards are how I "visit." It works for me!
I have found that my mother, who also suffers from dementia, is very, very repetitive with her behavior and her words, and she takes no medicine for it. Medicine or not, they're going to repeat themselves and get stuck on a theme, and go round and round in a loop sometimes. It's part of the disease, unfortunately, and not something that needs to be medicated unless she's extremely agitated.
Please try to take care of YOURSELF now, okay? Remember the good times with the mother you had when you two were close, before this miserable disease set in. There's no point torturing yourself with these new memories when the old ones are so pleasant. Dwell on those.
All the best, and here's a big HUG!
This must be so very terribly hard for you. And destructive. And it doesnt seem to be doing your mom any good, does it?
Is Xanax the only psych med your mom is on? It doesnt seem to be doing much good is it?
Tall to the psych team at the facikity about moms OCD and agitated behaviors and ask if there is some other med they could trial. Remeron, Lexapro, an antipsychotic....Something else may give her better relief from her symptoms.
The other question is, how is her behavior when you're NOT there? Is she calmer?