Not liking my feelings
Losing my empathy. I’m finding everything my DH does is irritating me! I can’t stand him not showering, wearing the same clothes for days on end - even sleeping in them, his constant watching my every move, lack of help with the smallest of tasks. He won’t go out unless he’s with me to provide entertainment. I actually enjoyed the “alone time” while I was in the basement cleaning up the muck from the backed up main drain to the street!! Please tell me this feeling will pass. I’m feeling so guilty
Comments
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Sorry you are both going through this. You sound burnt out. Is there any way you can get a family member of hire an aide for a few hours a couple of days a week to give you regular breaks?
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I know that feeling and know what it means for me. When I start getting that way, I know I need a break. It recharges me every time and resets my empathy levels.
It's ok to need a respite and get one for yourself.
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in addition to the burnout feeling… I think that over time you don’t see the PWD as the same person you know and love. They become someone new, that you barely know. So while you are feeling anticipatory grief about the person you love, you are dealing with providing care for someone you barely know. Your feelings toward this new person are much more objective. If that makes any sense to you?
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Can get toxic being couped up with the one you care for, been there for real. Whatever you can do get in home help to allow you to reset your emotions outside the house will yield some balance in your life. I was fortunate to get help, get outside and live again. I'm a better caregiver to DW and feel I'm a much more balanced in my life now. Best regards.
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I know those feelings anger and annoyance at everything that my DH does; then the guilt because you know deep down it’s the illness but being cooped up all day 24/7 is unbearable and toxic. I need to plan with an outing each day it’s hard work just getting organised to get in the car but once done I turn off my ears to my DH and try to get some peace in my head. Burn out is terrible I also use music (soppy stuff with romantic words) it rejuvenates gentle loving thoughts towards the man he used to be. I hope something helps it’s a horrible journey. Try to look after yourself with things you like. Take heart.
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What helped me was putting myself in his shoes and how awful it is what he is going through. Such a independent man his whole life that I could depend on. That takes me out of it. Yes I get tired of it all and get frustrated but try I try to snap out of it
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so sorry. We understand. It’s not him, it’s the disease. He can no longer help do things. He shouldn’t go out by himself. He doesn’t shower because he can’t remember when he showered last, he can’t remember how to shower, he’s afraid to shower & he no longer likes water touching his skin. Going out creates anxiety for him. We had to stop going to restaurants because he couldn’t read and understand the menu and couldn’t decide what he wanted to eat. Read the book “The 36 Hour Day” which really helped me after my husband’s diagnosis. It gave me tips on how to get him to shower. Your DH stays close to you because his world is falling apart & you are his anchor and your absence causes anxiety. It helped me to stop looking at my husband as my spouse and look at him as my patient and me his nurse. As others have posted please get someone to stay with him so you can get away by yourself. Or look into a County Day Care Program for him. Maybe start looking into Memory Care. Hugs.
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I don't know if those feeling will pass but my wife is now in MC and when I go see her, she regularly accuses me of having an affair with one of the other residents (she had an on and off affair earlier and I didn't know the whole story until after she was diagnosed), so in those time those felling come back. I think you were probably right on the mark when you said you enjoyed some alone time while in the basement cleaning up muck. Before my wife went into MC I got a wood lathe and that gave me something else to focus on for 1/2 hour or hour at a time while she was sleeping to give me a mental break. I think that anything that changes your mental focus (that is not a disaster) is good like some little hobby that you can do even if it is only while they are sleeping helps.
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great advice and insight thank you!
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Thank all for your great advice. It so helps. Always a learning curve with this illness
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I don’t think it’s empathy towards my husband that I am losing, but more irritability that verges into anger. It may sound weird, but the anger is because on some level I blame him for the progression of the disease. Some days he is able to help me get his arms into his shirt or lift his feet so I can put his pants on. A day later his arms and legs are dead weight and I have to lift them. Or when trying to feed him he clamps his mouth shut for a few minutes or doesn’t want to swallow, or pulls off his bib repeatedly. Half an hour later he is cooperative. Or he whispers all the time and sometimes it’s just word salad. There is this feeling that he does these things on purpose or forgets on purpose, when logically I know this isn’t the case. It’s just that some days everything goes so smoothly and then other days they go to hell. I love him, even the man he is now, but it’s been over 4 years of him needing constant care and another four where symptoms were mild, and although I’ve adapted, I miss our old life.
Edited to add- I can’t tell you these feelings will pass, but for me the get less frequent. And if you’re anything like me you will always have feelings of guilt. If there isn’t a logical reason, I invent one. But you always have people here on this forum to talk to. I will be here.
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JC5, I can totally relate to what you’re saying. I have the same feelings sometimes with my DH, then guilt sets in. The multitude of different feelings we cycle through as caregivers sometimes gives me whiplash. One minute I’m being patient and calm and the next I’m in tears because just won’t let me finish my cup of coffee before going out for a walk. I try to tell myself that I’m human, I can’t be perfect all the time, these feelings are normal, it’s not his fault, and move on. It’s so hard to do though!
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Thank you all agin for you4 insight. I took some advice I received from previous post about getting out and doing something enjoyable, even if it’s with DH. This afternoon we went to a restaurant on the water near where we live. I got him settled (ok to fend for himself for a while). I went for a lovely walk on the the boardwalk returned 1/2 hr later to join him. He was sitting at the bar listening to a duo singing a fabulous repertoire of music from the 50’s - 80’s. The entire place was singing along and he was so happy. Well time to leave and we walk to the car and I said “ Wow they were great!” His response was who, the waiter? When asked about the music he had no recollection. So sad, I teared up as I drove home. Those 2 hours were great tho. Wish he could have remembered the fun he had.
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It’s so sad, I know! A couple of hours of fun though is still worth it, even if only you remember it. I use a journal app that I have set up with a template to record Daily Joys and Challenges…this is to force me to think about good things as well as bad.
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Hi @JC5 , re your basement cleaning brought a smile of recognition:
For a while, I've been telling friends, "Don't think I'm whacked, one of my most relaxing moments during the summer was the night I painted the garage floor at 11 p.m."
I had purchased all the materials earlier in the summer; the garage was way overdue. Then, one night when DW nodded off before 10, I thought, "this is the night." I cleared the floor, put a baseball game on the radio and began going back and forth with the roller. The night was dead quiet save for some low-level baseball chatter.
It was very meditative.
I don't know how any spouse could NEVER feel angry, frustrated or irritated.
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We without dementia live in the past, present and the future. Our loved ones with dementia pretty much live only in the moment, whether those moments are pleasant, troubled, or just empty. Know that you gave him the gift of two hours of happiness. You will hold the memory for him. Sometimes I bring up past pleasant memories by telling DH, "I was just thinking about….." He seems to get momentary pleasure from my emotions of pleasure and delight in telling him, even though he can't remember the actual event.
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Someone posted this to me : We are going to give you this empty bucket that you will proceed to fill with guilt. I keep this on my desk as a reminder that I am going to feel guilty, no matter what.
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There is much not to like on this journey. Please do not feel quilty…
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I just joined this group. My partner's neurologist just moved his diagnosis from Mild Cognitive Impairment to Alzheimer's. This has been reported by law to the DMV and he will be heading towards reexamination for his license soon. I have been dreading this since driving is one of his main pleasures and he's a very good driver but I am pretty sure he will fail the written test if not the driving test since he gets so anxious. Since I am in a wheelchair and do not drive this will change our world in a real way as a couple but mainly it will take away something he truly loves and allows him to go hiking in the area. I am going to have to figure out new ways of transportation and I am resourceful, but mainly I worry about how this will send him into a tailspin.
In addition, he has 7 children from another marriage and they all live in our area but are starting to avoid their dad because they just don't want to deal with it. And when they do, they do it in a large group and he gets no interaction. And I find myself feeling resentful towards them because they are always pushing for some big plan but do nothing proactively to just be with him now. I keep saying that this is the time to spend with him, not later.
Gosh, it is so much. I know it sounds silly but I chose not to have children in this lifetime and yet I feel like I am living with a teenager and am super irritated at that. The level of patience and selfless giving that this is asking of me is not something I signed up for, and yet I promised I'd be there for him and so I will. Having a progressive disability myself, I get how the parameters shrink and what that feels like. He has a lot of courage and I'll be there for him, whatever it takes. But wow. It is starting to get very real and I need to find more support. Big hug to everyone!
I have feelings of8 -
Allendswell, I am so sorry you are having to deal with all this alone.
I suggest you start a new topic and introduce yourself again so more people will see your message. Big hug too you too!
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my bh has refused to do the Safe Driving Test, I don’t know what will happen. He doesn’t understand that it is a protection for us if he is in an accident. Not being able to drive is a problem! Getting in an accident is worse! The last two days have been good, except the driving topic. We have played golf and eaten out twice and gone to the mall. Up and downs, I run to help with my stress.
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I can definitely relate to the losing my empathy feeling this week. Tried to go out of town a few days. 17 phone calls in five days… same topics every time. I told her the same thing the staff told her. She’s not dying, hospice is there for extra help, nothing major happened to her except she is on antibiotics for a UTI, and no one is keeping secrets from her. She either refused to believe or didn’t remember what she got told. By call 17, and subsequent visit today, I’d lost any patience I ever had.
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People seem not to comprehend that memories can just VANISH in a moment in a PWD. If they repeat, they are not being annoying, they never got it the first time. It's a disease, it's not a personality quirk.
Iris
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This discussion thread spoke to me very much ! The last few days have been challenging and it has been helpful to read of others situations. Thank you for being vulnerable with your honesty. This disease can be isolating, I'm learning asking for help isn't a sign of personal inadequacy.
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I agree that this platform is very helpful and it good to know that others have the same issues. Our loved ones don’t know what they are doing BUT for the caregiver it can become very stressful. We have to make sure we are taking care of ourselves, if we get sick, exhausted or stressed we can not do what we need to do for them. We need to make sure we are doing the 5 Pillars of Health EVERY DAY. (1 ) exercise (2) 7-8 hrs of sleep, (3) good nutrition (4) something you like to do- art, music, writing, gardening,etc. journaling has proven to help and to write about what you are grateful for today. Finding something positive that happened today is often hard. A good cup of coffee, rain, sunshine, call from a friend , you woke up today! Finding a tiny positive thing today. Yes, this is very hard and I do struggle with finding positive things on some days. This journey is not fun or easy.
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> @JC5 said:
> Losing my empathy. I’m finding everything my DH does is irritating me! I can’t stand him not showering, wearing the same clothes for days on end - even sleeping in them, his constant watching my every move, lack of help with the smallest of tasks. He won’t go out unless he’s with me to provide entertainment. I actually enjoyed the “alone time” while I was in the basement cleaning up the muck from the backed up main drain to the street!! Please tell me this feeling will pass. I’m feeling so guilty0 -
I just joined today and your post is exactly how I am feeling! My mother is able to live on her own, drives to the grocery store, and does not live with me (thank God). No help from siblings. Neither one has had contact with my mother for a number of years.
I dread talking to my mother every day. It is like she invents a new "crisis" every day!
First, it was her car. It stalls out on her. It's been in the shop TWICE; the mechanic has driven it; and I have driven it. Nobody has any problems with the car.
Second, the clock in her kitchen. She couldn't change the time. Apparently the clock was broken.
Third, she somehow put her cell phone on airplane mode (she's done this more than once) and can't undo it.
Fourth, now she can't unlock the outside door. The key gets stuck in the lock. She's in a prison. Her words.
I am tired of listening to her daily rants and don't know if it is Alzheimer's or if she is doing it for attention. She likes to play the victim and knows I'm not a sympathetic person (thanks to my parents upbringing). I don't want to hear her whining. I want my own life.
She stopped taking her Alzheimer's medicine. I'm angry at her for doing that and told her to live with the consequences. It's all on me and I don't want the burden. She won't listen to the doctor. It's all on her.1 -
Don’t feel bad… we all have days like that, we just get to the end of our rope and hang on for dear life! Venting helps ALOT I have a support group I go to once a month, added a Zoom support group and then joined this group.. I need alot of mental support.
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> @ImMaggieMae said:
> I don’t think it’s empathy towards my husband that I am losing, but more irritability that verges into anger. It may sound weird, but the anger is because on some level I blame him for the progression of the disease. Some days he is able to help me get his arms into his shirt or lift his feet so I can put his pants on. A day later his arms and legs are dead weight and I have to lift them. Or when trying to feed him he clamps his mouth shut for a few minutes or doesn’t want to swallow, or pulls off his bib repeatedly. Half an hour later he is cooperative. Or he whispers all the time and sometimes it’s just word salad. There is this feeling that he does these things on purpose or forgets on purpose, when logically I know this isn’t the case. It’s just that some days everything goes so smoothly and then other days they go to hell. I love him, even the man he is now, but it’s been over 4 years of him needing constant care and another four where symptoms were mild, and although I’ve adapted, I miss our old life.
>
> Edited to add- I can’t tell you these feelings will pass, but for me the get less frequent. And if you’re anything like me you will always have feelings of guilt. If there isn’t a logical reason, I invent one. But you always have people here on this forum to talk to. I will be here.0
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
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