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Stage 5 musings

Anonymousjpl123
Anonymousjpl123 Member Posts: 711
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My mom is in Stage 5. Part of me feels like it was too soon for memory care, but I swear when she was in Assisted Living everyone was like “isn’t there more support for her? Shouldn’t someone be checking on her?” Etc. Etc.

Now, I worry about her decline. Today she asked if we would visit my sister (same name as mine). I told her there was only one me, and she said “oh no, there are at least 3.” On a drive, she called my phone and swore she was calling someone else (again, same name).

Yet all she does is complain that she’s being treated like a child, living with people who are far worse than her, and wants her own apartment. How her friend (who is not miserable there and probably also stage 5) is less miserable because she has such great family support.

I lost it - not about anything in particular but the constant negativity. I just got frustrated, didn’t say anything terrible. She knows and feels bad that she wasn’t a great mother - my other sibs want nothing to do with her. The last thing I want to do is make her feel worse. Soon, we won’t have these conversations.

But it’s so hard navigating this in between stage. I don’t want to act like she has no mind at all, but I know how broken it is.

Comments

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 711
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    Also: her constant wanting to move in with me makes me want to save a crap ton of money, hire someone for while I’m at work, and not have to deal with her complaints.

  • M1
    M1 Member Posts: 6,788
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    On another thread recently someone commented about their loved one being "only stage 5." Stage 5 is severe, late stage dementia. Don't forget that. And don't give in. She's in the right place.

  • NUMber2
    NUMber2 Member Posts: 92
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    edited December 2023

    I am so sorry that you are going through this. My story is very similar to yours. The feeling of guilt- either doing nothing or simply making the best educated choice... you can't win. Both choices are awful!!

  • housefinch
    housefinch Member Posts: 434
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    edited December 2023

    @Anonymousjpl123 I am sure there’s no good answer. I am sending you strength and sanity. Remember that you and your sanity and your chance to have your home be a refuge for you is important, too. You deserve to have control over your living space and an oasis for yourself. If I remember correctly, you didn’t have an especially caring or empathetic mother when she was mentally healthy. I would protect yourself and your living space—-my 2 cents at least. Easy for me to say because I’m not in the exact same situation (have a mom who behaved similarly to me as a child, though). I don’t usually trust my instincts and second guess myself constantly—- not only does this stressful disease cause everyone to do that, but a childhood with a misattuned parent will do that, too. Sending you hugs.

  • Emily 123
    Emily 123 Member Posts: 864
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    edited December 2023

    Hi jpl,

    This is a natural, but not always good, time of year for reflection.

    The struggle with guilt will always be there. But you were relieved after the move and felt that it was pitched to meet her needs on her worst days. She needed more 'eyes on'.

    A move to living with you will not turn your relationship into a ray of sunshine, but it'll create constant friction and more angst for you. In your heart you know that she's not able to process information or emotions at an adult level, and you'll be setting yourself up for constant exposure to negativity.

    Whether you like it or not, you are a trigger as well as the sounding board for her frustrations.

    She can't have her old life back.

    Don't put yourself in situations where you're the punching bag. You've gotten advice from the board that it might be good to continue to let her settle in to MC, but it sounds like you're taking her out, which reminds her of her losses.

    I know you see her slipping away and you're trying to hang on to the 'mom' part of her, but if reminders of 'outside' are agitating her it would be better to not expose her to those triggers. It just makes it harder for her and for you. It's not a kindness.

    Trust me--I'm right there with you, and it is so hard when all you want is for them to appreciate that you love them. But most of the time they can't.

    And the key words there are ''when all YOU want''.

    I only get smiles when I let Mom alone, otherwise she gets irritated and pushes back (Mom's just getting over the flu and a UTI so we've had a great week). It sucks that they no longer have the objectivity to see that you're making the right decisions. But there's no way I'd bring that kind of emotional chaos back into my home at this point in the game.

    Don't let her chorus of discontent drive decisions.

    Reduce the triggers that remind her of 'before'.

    And stop feeling guilty for making a good decision. I wish you a peaceful holiday jpl!

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 711
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    edited December 2023

    @M1 @NUMber2 @housefinch @emily

    Can I just start by saying I am blown away by the spot on accuracy, thoughtfulness, kindness and support that has come through in these posts??? Thank you for giving of your time, and such brilliant compassion.

    I am beginning to feel like whether it is a parent, sister, in law, partner, close friend - whatever the relationship, being the primary caregiver for a loved one with dementia is a special kind of all consuming hell that really only those going through it can truly understand.

    I have come to my senses and of course know she is exactly where she belongs and that her living here would almost be negligent.

    She nearly climbed the stairs in a panic while I took a bath, frightened I had left her alone. She called me (upstairs) and her friend in terror. She thought she was alone in a strange house, someone might break in, she didn’t know whose house it was. It was 10 minutes. She would not be safe here.

    That said @housefinch you are spot on. I need boundaries, and my life, or nothing good will come from this. So much of this is me trying to repair things that aren’t mine to repair.

    And @Emily 123 you too are exactly right - I am trying to get her to see, or understand, or act in ways that she can’t. The flu and UTI? These are the things that do me in. Because it’s so exhausting - for your mom, then you.

    The truth is, though, some good has come from this. My mom now agrees her current place is absolutely the best place for her to be. In our case, I don’t think it’s coming to my house triggers her so much as that she’s right now in that awful place mentally where she loses more threads every day, has moments where she knows it, and is terrified. My animals are a great comfort to her. I’m familiar, and it’s not always bad when she comes.

    After I lost it, she had a moment where she really saw me. I don’t expect her to remember it, but I’ll take it. And be grateful.

    I think it helped that I screamed (which wasn’t perfect, I know) “if you hate where you are so much we can find somewhere else, but it’s not going to be my house!” And because I suck, I cried. I told her we could look at other places, and meant it, but when she realized she can’t live with me or on her own she said she wants to stay where she is.

    Today, with fireplace, holiday music, and a few of my friends who dropped by, we salvaged things And, as happened last time, after a couple of days with me she is ready to go back lol.

    For now, I’m going to try to find a rhythm. I’ll talk to MC, see what they say - I plan to visit on weekends, but during the week focus on me - my job, exercise, health, life. And the truth is this isn’t for much longer. I write this with eyes filled with tears because the days where I could visit others with her are done. She now thinks there are two of me most of the time, like she’ll call me on the phone when I’m right there and think she’s talking to someone else, and pretend she is even when I keep saying it’s me. She doesn’t know the date, time, most people, and, quite frequently, where she is, but she remembers my dad, our family, our past. This disease is so weird. What I’m truly relieved about is the agreement to stay where she is. Yes, she will forget, but I think she is scared too. She knows she can’t handle being alone. She knows I’m in this with her (for now). She’s safe where she lives. And I guess that’s as much as I can hope for. I’m grateful for it, truthfully.

    Thank you all so much for listening: holidays are hell with this disease, and yes, I am now back to being eternally grateful for quality memory care. Don’t knock it. It’s a huge deal knowing she’s safe.

  • Emily 123
    Emily 123 Member Posts: 864
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    It sounds like you're in a good place-so glad that your mom responded to you and she's able to have a preference. It's lovely that she was able to visit with you and your pets-they are such a comfort, aren't they? Don't feel bad about breaking down, I was getting Mom ready to go to the ED Thursday night and I grabbed the new incontinence briefs right out of her hands in an effort to keep them clean because she didn't remember to wipe. It was clearly a dignity & control issue for her but I was really feeling the pressure to get her to the hospital and lost my patience. (I had asked the AL to check for a UTI on Tuesday and they dropped the ball. I was so fed up with them.) I don't think that there's too many saints in the Parent forum that haven't had their challenges. 😐️

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 711
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    lol no saints here @Emily 123 ! And it’s so true. She did great on the holidays, and after we got back to MC even had a visit from old friends.

    in hindsight, I’m relieved we did this. Her cognitive decline continues, and while she still knows I’m her daughter, there are some pretty crazy tall tales. She introduced me to the mc director as her daughter, and said “we only just figured out this weekend that we were mother and daughter!” Then today she told me she was not going to adopt the daughter she met a few weeks ago, even though she probably was her daughter, so she could focus on her relationship with me. I just go with it. But it does make me sad, as this very much seems like she won’t know for sure who I am soon. :(

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more