I failed as caregiver today
Yesterday I picked up a nasty cold and had a really rough night last night trying to sleep. This morning my wife (who has Alzheimer's, stage 5) had another emotional meltdown. Partially accusing me of of keeping her here at our house to kill her or some such nonsense. I am at low ebb, having little to no patience this morning and she picks today to come unglued. I had to cancel a guy coming to do a broadband install because of my cold and her behavior. I just have no empathy for her this morning and I know I'll hate myself later for how I failed caring for her today but at the moment I just wish she wasn't here or I wasn't here. This is not a good day for me to have to really care for her. Can’t she just take care of herself for one stinking day? It’s days like today when I have a short fuse that I wish she was in a facility and I could just life my life. Horrible thought. Self-centered thought. But it’s how I felt a bit today. How am I going to keep this up for years to come?
That's a rhetorical question by the way. I know tomorrow I'll feel better and be able to care for her well. I'm just putting this out here as a way of venting to a group of people who know how I feel.
Comments
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We all have those days because we are human. No one can be 100% perfect on every day. If there’s no one needing to be taken care of. Add a PWD and being sick on top of it … there’s going to be times when we fail.
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Vent all you want/need @SpokaneTom! I/we know exactly how you feel. I don’t have a nasty cold and still have those days! I call my DH all sorts of names under my breath - and then have to remind myself that it is the God-awful disease and not him! Then feel miserable and mad at myself for failing him.
But, as you said, the next day is back to ‘normal’ and we get on with it. I am doing my best to heed advice from all who have lost their loved ones - to take each day and make the best of them because soon enough we will be alone and in stage 8.
Hugs! 💝
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I have not been tested yet but I fear I may be in early stages. I want to learn as much as I can now and get treatment. Itscscary and I know my husbsnd has little patience with me as it is now. What will happen to me if he leaves me or puts me away.11
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We’ve all been there. It’s not that misery loves company, but it’s comforting to know that others have been through and survived what we’re going through. Natalie Edmonds in “Dementia Careblazers” talks about the “Negative 50.” Our lives have always been a combination of good and bad. Our negative 50 right now is caring for someone with dementia, and we feel powerless in changing this. We know that there will be challenges and obstacles. Edmonds tells us not to resist those challenges. An example of making the negative 50 worse is losing patience with our LO and getting angry with ourselves; and that turns into burnout and exhaustion. Beating ourselves up never makes us feel better. Edmonds tells us to put our energy and attention into things we can control. Her challenge: When something negative happens say, “This is my negative 50. How do I want to respond to this? I get to choose.” Observe and allow negative emotions to exist, but stop the judgement. You’ve survived days that feel like the negative 50 before, and you have the strength to survive today. I wish you healing and a much better day tomorrow.
Ed shared a program by Natalie Edmonds a few years ago. It’s meant to be watched over 5 days, and Day 1 is “The 50/50 and Suffering. It’s well-worth the time to watch. I just checked, and it’s still available. In the search block at the top of the ALZ Connected page, put Natalie Edmonds, and this course is the first topic to come up. And, you may be able to get the program by clicking below.
Day 2: Your Reasons & Should'ing
Day 4: Feelings & The Worst thing that can happen
https://www.youtube.com/watch?v=NSQENiGeqlo
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Thank you for sharing @SpokaneTom This is a maddening disease that challenges me in areas I had no idea existed. I’ve lost it with my DH and felt terrible about it too.
In the beginning of my DH dementia journey, quite often, this is how I felt.
Go easy on yourself, you’re dealing with a lot.
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You said "I just wish she wasn't here or I wasn't here" I have felt that way in the most permanent since several times through all this and then felt bad about thinking that. Then the next day is better (sometimes). It is hard to not be a little self-centered when everything is going out (all the work, and caring) and nothing is coming back. We just have to accept this is where we are for now. I even fail at that sometimes.
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@SpokaneTom I think I can speak for a lot of people in here that we have all been there to one degree or another. This disease can take us to the breaking point. It must be even harder when you have a cold. I hope tomorrow is a better day for you.
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Just remember your not the only one that has felt this way. Don't beat yourself up. Tomorrow is another day, hopefully better. Take some cold meds and take care of yourself. Come here to vent. Hugs.
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@SpokaneTom I just want to say that I don’t see this as a failure on your part. Caregiving on a good day can be challenging, much less when we’re sick and/or lacking sleep.
Be kind to yourself. I think for many of us caregiving for a dementia/alzheimer’s patient will be the most difficult thing we’ll do. Sending hugs and hope that you rest well and feel better soon.5 -
Yup ! we all have those days, and will have again, but we do the best we can. I'll bet if you stand back and look you're doing a pretty darn good job.
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So who is super human? We are all just human with a breaking point and we’ve all been there especially if the situation is exacerbated by a cold or lack of sleep or money worries. It stinks it’s rotten but what to do. When our first born was 3 months old crying for what seemed like hours during the night, I remember shoving her into my DH’s arms, rushing to the bathroom and slamming the door and sobbing, I was just so tired and knew I could never hurt her so I went for safety first and called on my DH for strength. Now we have no one to call on, the only thing you can do is walk a few feet away from the situation, maybe walk outside or put earphones in and concentrate on some music, that too is an escape. Take heart and vent we are all with you, understand and have been there. It’s horrible and yet we wait for the sun to rise.
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Having a sickness added to caregiver stress and burnout is seriously frustrating. I recently had an internal infection with added high fever, migraine and brain fog, which created short fuse syndrome to the max. Antibiotics eventually cleared it up but I had to tell DW "Don't ask me any more questions, just leave me the hell alone!!" And she actually did for a while but wasn't proud of my outburst. I know she needs to be in memory care, but her separation anxiety is pretty fierce.
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you didn’t fail. You missed tbe ball or dropped a pass or threw a gutterball. Shake it off. We don’t have to be perfect and can’t be. We signed on for this ‘for better or worse’ and we keep in the game because we love them.
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No judgement here. I know that I have failed to be the person I need to be for DH more than once, been angry, seething inside and so on. I hope that tomorrow will be a better day for you.
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Spokane Tom- vent away, you have lots of company here! I’m no mathematician but I’m pretty sure there is some sort of universal theorem that describes this reality: let’s call it the law of “the worse we feel, the more they need”. I agree with everyone here, don’t beat yourself up over this. Consider trying to be a good loving parent to yourself, one who sees the daily binds and challenges you’re in and who says “ don’t worry sweetie, just let it all go for now”!
sending you a warm hug and some hot soup💜Karen
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I’m sorry you are going through this. Get tested, have a frank discussion with your husband about your fears and a possible plan. In the early stages my husband was fearful of the future and that I would leave him (that would never happen). We did get our finances in order and it seemed to help. This site also helped me immensely in learning how to have patience.
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You had bad days and good days even before she was sick. You’re still allowed to (and going to) have them. She might not even remember so don’t beat yourself up. You’re doing an amazing thing just by choosing to care for her.
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sorry you are facing this. Feel free to post in the
I Am Living With Alzheimer's or Other Dementia.
Section of this forum if you are diagnosed. Also let your DH know about this section so we can help him help you. 🙏💜
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Failed as a caregiver today? Oh hell no!
You were a caregiver today. We aren't saints. We're mere humans, doing the best we can every minute of the day. And we get up and try harder every day. That's not a failure. That's a warrior.
Hugs.
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@eligius how I like your analogy, they are true positive fighting words. Just the dose we all need. Thank you.
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You are pretty good people here. Thanks for letting me vent and giving me some good words in return.
I was writing in my journal tonight and I finally realized something which you all probably already recognized in yourselves. The underlying feeling I have day after day is loneliness. It's obvious in hindsight, but it just hit me this evening. I have people supporting me - it's not that. My kids are with me, I have friends and others that spell me from time to time. But underneath everything is lonliness. My best friend is gone. In her place is a woman who needs me to care for her, which I do. But when I look into her eyes, she's just not there. I miss her.
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I am so sorry Tom. It is so hard being a caregiver. Only Jesus could do it correctly all the time. God bless you for all you are doing. Saying that it is hard is an understatement. My husband is a lot like your wife. I wouldn't wish that on anyone. I'll be praying for you that the week improves. Carla from FL
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Last night I cried for the same reason. I realized that the person I married was gone. He's been gone for a few years. Trying to explain this grief to anyone who isn't experiencing it is hard. You'll be in my thoughts and prayers for healing.
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Absolutely you have hit the nail right on the head. Loneliness 😟
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I have been an "official" caregiver for 4 yrs now. I was caring for him in many ways for 2 or 3 years before the official diagnosis. I just moved my DH to a MC just over a month ago. Up til then I did all I could for him. I turned to him one day when we were able to have a coherant conversation and (I'm ashamed to admit this) said, "You know, I envy your mom." Then I explained that she never had to watch his dad decline/change (died of a massive heart attack age 46). Then I asked him, "Would you just have a heart attack?" He smiled and said, "At least you know if I do, I don't want any extreme efforts made - if the Lord wants me, He can have me." Nothing about this journey is easy. We all get tired, sick, down, burned out. We snap. We're human. Most of us find out the next day whatever we've said or done that's eating us has been forgotten by our LO. That's God's grace to US. Hang in there.
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Spokane, glad you wrote this post. I’ve always wanted to write something similar but was reluctant. I’ll just sum up my bad days with the following: I asked ChatGPT if since I can hear the dog barking inside the house next to me does that mean they can hear me scream when I lose my mind occasionally. The answer was - probably not.
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You definitely hit on a common thread here! Look at all the wonderful responses! We are all there and it’s ok!! Feel better!
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I always say … I’m a really good caregiver, until I’m not! We all lose it at times, and then feel guilty. I think the 2 hardest things about caregiving (1) is still doing EVERYTHING even though we are sick. There’s no time to take care of ourselves. (2) Being 100% responsible for another persons happiness.
So, I hope your cold gets better soon.
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Spokane Tom, I had the same kind of day with my DH. I am so devoted to him everyday and today he accused me of cheating on him with relative who is 15 years younger. I babysat him when he was a baby. So ridiculous! My DH in good days always thought a lot of him.
My DH is jealous of any male that comes into the house. Sometimes I need help with things in the house. DH said he has proof I had several boyfriends and said he had a detective follow me and has it written down. I told him to show me and then I lost it with him. Of course, he couldn’t find it. I don’t know why he comes up with these ridiculous accusations.
I know I should have walked away. I know you can’t argue with an Alzheimer patient whose reasoner is broken. My DH used to fix everything, but that is all gone. Lots of unkind words were exchanged. It’s so very exhausting for me.
I had the same thoughts as you were having today thinking my life would be so much easier if he were in a facility. An hour later he forgot the conversation. I also know tomorrow will be a better day and will regret my thoughts.
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it’s called delusions and medication might help. Talk to his doctor. So sorry.
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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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