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My mom suffered a massive stroke at the age of 59 in December of 2020. She has been left wheelchair bound, unable to speak or really point at a picture board. She is paralyzed on the right side, incontinent, and on a pureed diet due to her inability to swallow. It kills me to go visit her at the nursing home and see her in the condition she is in. I know it's frustrating for her to not be able to carry a conversation with me. Every time I go visit her, I end up sitting in my car afterwards and crying with grief because it feels like I lose her everytime I leave. I have some days where the guilt is so heavy because I worry that I'm just being selfish and need to toughen up and go see her. I'm just looking for some advice, encouragement, support for what I'm going through. Please be gentle with me though. Please don't be hostile.

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I'm so sorry for your mom, for you, for your family. You can ask the nurses or admin for ideas on how to make the visits "better". Maybe see if the facility is having an event that day or there's a therapy pet making the rounds. Then you can participate with her. Or load up your phone, tablet or laptop with recent pictures for her to look at, even though she can't comment on them she would probably enjoy seeing them and feeling included. Perhaps you can contact an occupational therapist or exercise physiologist who would recommend movements or "exercises" you could do with her; or take her to facility salon if they have one. Others will have more ideas. I would cry too if I had to see my mother like that at 59... may you receive peace in your heart.
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Cricket523 Jan 2022
Thank you for posting your sweet reply. It helps make things easier by bringing her only grandson who is the only one who can unlock "hey" for her. Her language is SEVERELY damaged but she sees him and says "hey." She likes to look at catalogs and magazines (unable to read) but she will look at the pictures. I adopted her kitty, Molly, and I may look into seeing if there is a way I can bring Molly for a visit. That would be the best treat for her.
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This is grief. It comes in waves. Let it wash over you when you need. It's ok to cry.

If talking is too hard, maybe tell her some news then listen to some nice music together. Find a new way to connect. Even if it is just sitting peacefully holding her hand.

That is what many people want. Someone who cares to peacefully hold their hand for a while.
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Cricket523 Jan 2022
I appreciate your post very much! It helps to know that other people know what I'm experiencing and can give me advice and support.
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Such a terrible situation for both of you, my heart hurts for you. My mother has advanced dementia so it's hard to go see her, too, so I know how you feel. Don't be so hard on yourself, though. You're not selfish at all; you're feeling the pain of the loss of your old mom here! I don't blame you. Bring photos for her to look at; my mother does enjoy that I think. Maybe you can stroke her forehead; I used to do that with my kids when they were little and feeling sad and they'd fall asleep from the comfort it gave them. And stroke her hair too. Human touch gives comfort like nothing else, I think. What more can you really do for her?

Wishing you the best of luck with such a difficult situation. Sending you a big hug and a prayer that God helps both of you through this to a more peaceful place.
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Cricket523 Jan 2022
Thank you for your sweet post. My mom used to stroke my head like that when I was sick! The most peaceful visit I had with her was laying on the bed with her while she napped. We were laughing together and talking in our mother/daughter language. Hugs and prayers back to you!
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If one thinks about it at first from a generic point of view it is understandable. You enter a nursing home. It is very hard to feel upbeat. My mother is primarily bedbound. Before I see her I encounter many other residents. None of them are in good physical shape yet are better off than my mother but are completely mentally gone.Many cannot speak or if they do it rarely makes sense. Most have a vacant lost look. They may seem in better physical shape compared to my mother which depresses me. I often make sure to go on Sundays when the facility is short staffed. Her paper does not get delivered to her unless I do it. The majority of the staff I encounter that day is far from upbeat. Most don't acknowledge me. She is almost always still in her nightgown that day. I do her nails which are never in good shape. I try to organize her area and go over her reading material. I wipe down sticky surfaces and sometimes part of the floor. I try to set up areas she can access. There is so little space she can get to.

She can verbally communicate which should make me feel better yet she is so physically limited. What about any of that can be considered upbeat? I see many of the same residents in their same lost states. I wonder how long they will be kept captive and why this is happening. What is the point to lives such as this? I should feel as though I have accomplished some good but there are so many frustrations. I take some solace in the fact that the resident next to her has just passed on. The woman never spoke and just stared up at the ceiling. I am glad she at least has been released from a hopeless existence.

I am so sorry for your situation and I can completely relate. I know I never want to end up like this and find myself wondering what I could possibly do before I might. None of that instills general positivity. When my husband accompanies me we both leave with a similar mental state.

All I can tell you is to know that you are bringing something positive by visiting your mother. She is likely a little better off because you have visited. Your sentiments are shared by many. My mother is taking a long time to go out. All that entails weighs on me. I often cried after visits. I guess I have passed that state due to the period of time she has been in SN. It doesn't get easier but bearable. I wish you strength.
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Cricket523 Jan 2022
Thank you so much for taking the time to post a reply to my question. It definitely helps knowing that there are people who have experience and I honestly wished that I had found this forum sooner to get the support I so desperately needed. <3 To you!
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You've lost your mom, so it's natural to experience grief. Now there's someone in her body that you'll need to get to know, so you'll be grieving the mother you knew while caring for the mother who's left.

It's really, really hard, but you'll be able to handle it a little better each day.
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Cricket523 Jan 2022
Very well said. Thank you so much. My mom was my BFF and my ride or die. Now I'm having to learn this stranger in my mom's body. Very difficult but I know where to turn (this forum) for encouragement and support.
<3
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Please be kind to yourself. Lots of people here can relate to what you are going through and feeling. I agree with others that trying to find something to focus on or do while you are there might be helpful. Even just looking at photos together or a magazine on a favourite topic. My mother has Alzheimer's and I dread visiting as well. I bring her British magazines and we look at the pictures together. It makes it tolerable. You will know best what your mother is capable of at the moment so try to build something from there. I still dread visiting my mother but having a focus makes it more tolerable. Sending you ❤️.
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Cricket523 Jan 2022
I cherish your kind words. I have had several great recommendations for things that can shift the focus and occupy our minds during the visit. She loves catalogs and she used to love watching funny cat videos on her phone. Sending you love back!
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Thank you for asking this question, Cricket523, and thank you to the many answerers! I have been going through this for the past 2 and a half years. My mother had a stroke and now has dementia as well, and is in a NH that angers and distresses me. Though people tell me the ones that accept Medicaid are all like hers. She has been in there since June 2019, and has now been on hospice care for a little over a year, when she suddenly stopped walking, vocalizing (she already couldn't speak intelligibly anymore), using her limbs for much of anything, and also stopped eating on her own. Just reading this thread is the best grief counselling I have received in all this time, and helps with the guilt I feel as well. Thank you to all of you for practical information, and for the comfort of knowing I'm not alone. I wish I could hug you all. Bless you.
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Katefalc Feb 2022
💜💜💜
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The last time my Dad was in the rehab facility he was in really, really bad shape (hospital induced delirium). I was having panic attacks when I had to go visit him, just sit in the car in the parking lot shaking. And he actually recovered. So I really feel for you. One thing I found that helped during the worst of it was bringing my tablet and having pictures and stuff on it (the tablet because the pictures are so much bigger). Instead of just talking I would show him pictures of the grandkids, my pets (he really likes one of my dogs), some work I had done on his house to fix it up for sale, that kind of thing. I don't know how much of it he really saw — he doesn't remember much — but it gave me something to do with my hands and something so I didn't have to just sit there.
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Cricket523 Jan 2022
Bless your heart! I know how panic attacks feel! I'm also glad your dad recovered. I will take your advice and definitely appreciate the advice and support from your post. Thanks so much!
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Nursing homes are dreadful places. No one wants to be visiting their loved ones in a nursing home. You are not alone in how you feel about these places. I can remember every time I went to visit my father in the nursing home I would smell like the place. That absolutely grossed me out.
The other part that makes visiting in a nursing home hard is because we feel terrible for the person we're visiting. No one wants to see someone they love in one. For you it's even harder because your mother is only 59. My father wasn't in facility care until he was 90 years old. It's worse when it's a younger person in a nursing home.
Maybe at some point when you visit your mom you could do so outdoors? Many nursing homes have nice grounds where residents and their families alike can be outside for a visit. That might make going a little easier.
Would it be possible for one of the staff at the facility your mom is in, help with doing a video chat visit so you won't actually have to go to the nursing home every time to talk to your mom?
Be kind to yourself and give yourself a break. It's not easy to adapt to what your new relationship with your mom is. If you have to limit your in-person visits to 30 minutes at a time or less, then that's what you do. Give yourself some time and you'll see. Visiting your mom will become easier. Good luck and God bless.
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Cricket523 Jan 2022
My mom and I have spent many sunny days out in the courtyard getting some Vitamin D when it's warm. Several good aspects of the nursing home she is in is that my neighbor who I've known over 10 years and my mother-in-law are both housekeepers there and my cousin is the administrator. I have a personal relationship with a lot of the staff and some of the residents too. I guess that's the perks of growing up and living in a small town where my family is well-known. I know that my mom is well looked after when I'm not there. I also send care packages through my neighbor when I can't make it for a visit but want her to know I'm thinking about her.

Thank you for your post (sorry to ramble)
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Please consider seeing a counsellor. You are grieving and need to get to a place of peace about your mom's condition. A counsellor can help you understand your emotions and find ways of coping with your mom's issues.

Might I also suggest that you go to visit your mom with some ideas of how to spend the time together:
play music she loves and sing along with the songs
bring photos and tell her about what is going on in each picture
bring flavored apple sauces - she would appreciate the variety
bring her scented lotion and rub it onto her arms and legs
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