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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.



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Aw Cedarlove, I feel so sad for you and I understand.

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.
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Swise02 Nov 2019
I love the term “love work” that is exactly what it is!
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You are definitely not alone. I’m not sure there are many people who feel great about seeing not only their loved one but the other folks in these facilities. It is sad and it is a reminder that we grow old and our bodies and minds fail us. I find visiting my dad very sad and stressful, and like you it’s hard to sleep afterwards. You just have to do what feels right for you. Could you take her a milkshake or something and just sit with her while she drinks it? Maybe it would keep her distracted...just a thought.
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I 2nd all the wise and wonderful people here who have given you the much needed support to limit your visits to your Mom. Do try to make the visiting that you do, to be short but productive ones that might include bringing her a treat, maybe one of those fidget boards to keep her busy, or one of those interactive stuffed animals (they make darling kitties that purr, meow and even move their heads and paws, blink!), or a walk about the property, weather permitting.

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!
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Cedar,

You’re very welcome. You’re not alone. Vent anytime. Hugs!
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I can't thank everybody enough for reading my question and offering your helpful answers. Just feeling less alone helps a lot.
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Dear Cedarlove, I'm sorry you have to see ur mother like this, & hope you don't feel bad about taking breaks from visiting. (Can you have someone go with you possibly? So you have some emotional support?) It's rough when it ends like this, so hold onto memories of better times, & please get a counselor for yourself. 💟
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Cedarlove - For me, what your mom's going through is pure torture, is hell on earth. And you have to watch her going through that hell and can't do anything about it. It is torture for you, too.

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.
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rsynal Nov 2019
Folks need to show support for Death With Dignity legislation in their home states -- or initiate public hearings, referendums, whatever it takes. I met people in FL who moved to the NW so that they would have that option. Will never happen in FL cuz gov't profits from all the old folks 'til their last breath.
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I am so sorry that you're going through this as your mother is not the same person that she once was, sadly. Prayers sent to you.
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I feel so many of the same things you do. You are not alone in these feelings. I too dread seeing my dad but I do not feel guilt as I’ve done nothing wrong. I go out of obligation and yes, love. On the way there I give myself the Jesus pep talk, I call it. I ask God to give me the right words to say and to let me be the presence of Christ on earth. Now I know not everyone here is a Christian and may even be atheist, but one can still go to be the presence of compassion. It just helps me to get through the door. I only go about every 3 weeks because he doesn’t remember my visit and it makes me less stressed and depressed. I do not know what is holding my dad to this earthly plane. He is 98 and so tired of a life like this and says he wants to die. I wish for his sake that he could. It is one of the most heart rending things we can endure is to see a parent we loved and shared good times with be destroyed by this disease. Out of my 3 sisters, I live here and am his witness. That is what I feel I need to be. It is hard, so hard. You do what you have to, and only as much as you can. hugs to all caregivers here!
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I’m so sorry for you in this. During my mother’s nursing home years there were many times I absolutely dreaded the visits, and my mom didn’t have any dementia behaviors. It was just the environment in general, hard to see a mom I was was so close to in a situation like that. I do encourage you to keep visiting, for the staff though if not for your mom. The staff needs to see you there, that you have eyes on the place and what’s going on with your mother’s care. She needs you as her advocate now. Keep your visits brief and do something positive right when you leave, whatever brings you joy and peace. This is so hard, I wish you the best
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My personal opinion on the matter is that everyone is not cut out to be a caregiver.  I will be the first to raise my hand and tell you it is not a desire of mine, nor do I have the patience and understanding required.  I don't look at this as a character flaw of any kind....just like I don't take it personally that I can never be a public speaker or a salesperson.  I don't have the desire or the skills.  I also feel that the type of relationship you had with the person prior to them getting sick plays a huge role in whether you can tolerate it.  Taking care of and being around someone who is wheelchair bound but still has their faculties is totally different from being around someone who doesn't know who you are, what day it is or how to swallow.  TOTALLY DIFFERENT.  I read the post from Dollie1974 and two things came to mind...first I thought how lucky her mom is to have a daughter like her so kind and patient and available and the second thing I thought was "I will never be her".
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rsynal Nov 2019
Yes to all that you said- intellectually, at least. Emotionally, however, need help dealing with guilt. I've been away for 3 mos.- I suppose that I need more time to heal.
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Is it possible the overall atmosphere is getting to you? It is possible for a facility to be cleaned adequately to avoid a smell as soon as you open the door. And seeing others in varying stages of dementia is troubling as well.

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.
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(((((Hugs)))), I am so sorry you are going through this. Hopefully this stage will run it's course soon. If you haven't done so, talk to her medical team about something to help ease her anxiety.

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.
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Hello Cedarlove,

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.
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I can't speak for you, but for me I would keep going. My mother never had dementia or any other cognitive disruptions but hers was more physical. I cared for her and drove her to all of her appointments etc. At times, she would fall and I would have to go in the middle of the night to pick her up. This became frustrating and wore me out. But I pressed on. I did loose my cool a couple of times because I wanted the old spunky active mom back ( I knew I was in denial). She understood my frustration because I still worked full time and took care of my home, kids and hubby but she was patient with me and never said a word.
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.
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I feel exactly like you do.  I get physically ill dreading my visit with her.  My mom has been "gone" for a long time.  This is just a body I am trying to manage.  I can't tell my feelings to any of my family...you know, the ones who never helped and never visit her, but have tons of opinions on what I need to do and how I need to feel.  I don't have a solution for you or me, but I just wanted to tell you that you're not alone.  I have cut back on my visits.

Take care.
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sandieg Oct 2019
yep been there too :-(
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So very sorry you’re going through this. When I visited my elderly parents (Dad passed at 86, Mom still alive at 97 living in “enhanced” assisted living facility), I would come home and feel similar to what you describe. My parents live three hours away and I would sometimes be so angry during the drive home, I’d have to pull over to cry. Please take care of yourself. The idea of a quarterly or every other month visit sounds like something to try. You may feel guilty, initially, but you will definitely feel better. Take care.
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Ask yourself, "When Mom is dead, what do I want to remember and feel about her and her life?" You are currently grieving the "loss" of the woman you knew every time you visit. You are saddened that she is "locked up", that she has mental "do loops" (needing to void and asking for Tylenol), and she needs antianxiety medications to deal with her frustration and confusion. May I suggest that you try to create a little joy for her and you when you visit. Bring a favorite snack, read from a favorite book, do simple puzzles or talk about people from the distant past. Share flowers with wonderful smells. See if she can be wheeled into the garden- if they have one - to feel the sunshine, hear the birds, and see the sky. When you leave, give her some physical signs of affection: hugs, kisses, a backrub... then firmly remind yourself that you visit mom because you love her and not because of her losses. She may not remember your name or how you are related but she will remember you as the kind person that loves her.
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Another example of the flip side of The wonders of “living longer “. Your mother is 95. Think about that for a moment. 95. That’s an enormous amount of time to be on this earth and what has it gained. One dutiful and loving daughter with a broken heart and feelings of guilt. One very old lady living in our worst nightmare waiting for her last breath

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
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NeedHelpWithMom Oct 2019
Yeah, they wonder why they are still living. My mom would say, “Why am I still around? I never expected to be in my nineties.”

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.
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You’re not alone. My mom doesn’t have dementia but she has Parkinson’s disease. I think your situation is harder emotionally.

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.
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Cedarlove I am so sorry you are going through this. I go through this with my 95 year old mother who lives alone. I hate going over there. She tries to pick arguments with me. I try to distract her with something else, like show her pictures of my brother n sisters laws grandchild. My mothers great grandchild. It usually works until I’m ready to leave and she starts firing off more and more questions and I have one handle on the door and then I end up yelling at her. I like surprises idea.Send a nice loving card once a week. My mother always sent letters to my grandmother when she was in a nursing home. My grandmother always wrote back. We only visited my grandmother in a nursing home twice a month. That’s all the amount my mother wanted to visit her. Twice a month. They wrote letters once a week and sometimes twice a week.
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I totally sympathize. Mthr can no longer talk or walk and has the attention span for about 30 seconds. There are old guys at her MC who come up to hit on me if I don't have my husband around. I have nightmares afterwards. So I've come up with some ways to cope.

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!
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My heart goes out to you and breaks for you. However, as others have stated, you are a decent and loving daughter. You are doing your best. I know you must Miss the woman your mother was before, and the relationship you had in the past. On her good days be sure to bring anything you have photographs videos even though cards and letters to share with her. May God Bless you both.
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Just wanted to say that you are such a good daughter...and my heart breaks for you 💔
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My hubs hated to visit his mom in the AL and then the MC,, she knew who we were after a time,,, but we always found her asleep in her chair in front of the TV in the sitting room, or doing something stupid like folding socks for HOURS. We also always signed in .. because otherwise the other family would say we never visited.. not that they did! I felt the stress, and he was worse because it was his Mom. Our solution was to go once a week, about a 1/2 hour before lunch,, and then then leave. Less stress for him, and we were able to get her to a meal. Do what you can. don't feel guilty, and be at peace
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lealonnie1 Oct 2019
Folding socks, or towels or washcloths, is a very soothing/relaxing pastime for folks with dementia. It also helps their need for 'repetitive' motion without being annoying or harmful/destructive in any way. It's a suggested activity for lots of people suffering with dementia and wanting/needing something to occupy their time.
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I would definitely limit my visits with your mother, considering the situation, and especially the fact that she has no recollection you were ever there. There really is no point in you subjecting yourself to such a scene and the aftermath you're left with.
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!
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(((((((Hugs)))))))).

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?
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