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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.

What you are feeling is completely normal. My daughter is feeling the exact same way about her father (my husband). You need to do what is best for you to save your sanity. In my husband’s case, I Visit Often but 5 minutes later he does not remember that I was there. What I have started to do for my daughters request, I FaceTime her while I’m visiting him to make it easier on everyone. She’s having an extremely difficult time accepting my husband‘s diagnosis of Alzheimer’s dementia/vascular dementia. It is a horrible heartbreaking illness and I honestly prefer that she take care of herself now so that she can be there for her son and not be sad and depressed all the time. I try to spend as much time with him as I can while he’s still recognizes meAnd I realize that we are all grieving and we all grieve differently. Be kind to yourself. You can’t change things, you can only learn how to live with these changes. Your loved one knows you love her and she loves you as well. Good luck to you and I’m sending you hugs💜💜
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Reply to Katefalc
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You are far from selfish and what you feel is NORMAL. I’m going thru the same thing with my husband. He has been in a long-term care facility for five weeks and I have gone almost every day up until the last week and now I dread going to see him even though I miss him so much and I love him so dearly but when I do go to see him the rest of my day is completely shot. I get so sad and depressed I can’t stop crying and my daughter feels the same way. She dreads going to see him because she can’t control her sadness afterwards. We are all grieving what we know is gone forever. My husband has Alzheimer’s and vascular dementia and he is declining Rapidly. I see a big difference every time I go even day to day. The pain I feel for him is excruciating and he cannot remember for more than five minutes so most of the time he forgets that I’ve even been there. I’m putting more stress and anxiety on myself just like you are doing to yourself and quite frankly I don’t think it’s necessary. When I’m not able to go I call to check on him at least twice a day. Stay strong and know you’re doing the best you can and you’re not alone. We all need to be kind to ourselves because this is a tough battle we are all going through. 💜
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Cricket523 Feb 8, 2022
Thank you so much for your kind words. I certainly feel for you and my heart goes out to you, your husband, and your daughter! It helps knowing I'm not the only one who can't bear to see someone they love going through such suffering. I can't bear to have my heart ripped out on a regular basis. 💜
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Cricket523: What you are experiencing are normal emotional responses to a difficult situation. You are a human being. I am very sorry that your mother suffered a massive stroke at so young an age. Perhaps you would benefit from seeing a counselor. Sending big hugs and love. Take care of yourself, dear Cricket.
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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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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 17, 2022
💜💜💜
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Your feelings are completely normal. I used to get nauseous the minute I opened the door and that all too familiar nursing home smell hit me in the face. Try to come up with a plan that you can tolerate/manage. Maybe plan on a short stay like 30 minutes. Take a magazine and read an article to her. Bring up some pictures on your phone to show her of a pet or child in the family. If you have an itinerary, it will keep you on point and maybe you won't have those awkward silent moments. I don't know what your mom is capable of, but maybe you take a puzzle and lay it out in front of her and you work it while she watches. Same thing with a coloring book. If she has a tv in her room, check to see when one of her favorite shows is on and plan your visit during that time so that you can watch it together.

My visits with mom are not very long. This past Monday I took some donut holes and coffee to her and we sat in the common area with some of the other residents and I talked about everything from the weather to various donut shops around town...ones I liked, ones I didn't like. I just make random conversation. I asked her friends questions, sometimes they can answer, sometimes they can't.

It's short, sweet and superficial conversation. But I get to lay eyes on her, see that she is ok and tell her I love her.

You are young and still grieving and that is completely normal. Create a visit that works for you.
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I use to sit with my Mom for a couple hours watching TV with her . Then I might go to a therapy session to talk - so I had some support . Go over to her apartment and sleep there . I did that for a few months . My brother got sick and fell so I had to take care of him . Maybe have a friend or social worker to talk to .
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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 18, 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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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 18, 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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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 18, 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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My husband had a massive stroke at the young age of 48 which left him paralyzed on his right side, unable to walk, talk, read, or write, and early on couldn't swallow either and had to have a feeding tube put in his stomach. Thankfully in his case he was over time with the help of physical, occupational and speech therapy, able to learn to walk again with the help of a brace, dress and do his daily care himself, get his feeding tube removed, and talk in very short sentences and words. He never regained use of his right arm however and was never able to read or write though.
It is very hard to see someone you love become so dependent for their every need, I know first hand. And while you find it difficult to visit your mom, you must know how important your visits are to her. I'm sure they are probably the highlight of her day, so I'm hoping in time that you will figure out a way to go visit her without it being so upsetting. This is her new "normal" now, and you have to be able to find your new "normal" with her as well. It should get easier over time.
Perhaps if you put yourself in her shoes, you will begin to understand just how important your visits are to her, and that it doesn't really matter what you do when you visit her, as it is you just being there letting her know that you care and love her.
And not to frighten you, but the grief you're feeling now doesn't ever really go away, but in time hopefully you will be able to keep it in check a little more.
God bless you my dear.
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Cricket523 Jan 18, 2022
Wow. Thank you for your post. It sounds like my mom and your husband had the same type of stroke. Unfortunately right before Christmas of 2020 she came down with aspiration pneumonia and then respiratory failure (both as a result of the stroke) and I was forced to make the decision to have a trach and PEG tube placed.) I'm so happy to hear that your husband has regained mainly abilities he once lost. I really understand what you mean about "finding a new normal."
God bless you too! Thank you so much!
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My Mom was always in a common area. I requested her not be left alone in her room. She liked watching other people. In her AL she had residents that were mentally Ok so I would talk with them with her next to me. In the NH there was a woman visiting her DH who had a stroke and could not interact. So we would talk and she would say to Mom "isn't that right P".

Like suggested, find out when they have activities. Talk to the physical therapist in what you can do.
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Cricket523 Jan 18, 2022
Thank you for your post. The staff there is very loving to my mom. They will paint her nails and play her favorite music and she likes to sit at the nurse's station and watch them do their jobs. The glimmer of happiness is that she still has the same spunk and memory she had before. It's just all locked in physically.
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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 18, 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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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 18, 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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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 18, 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 18, 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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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 18, 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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