Greetings from aphasia caregivers | Caregiver Action Network

Greetings from aphasia caregivers

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Greetings from aphasia caregivers

My wife and myself are caregivers for my mother who is a sudden and unexpected stroke victim. She now suffers from Aphasia, entering the sixth week. My wife is more the care giver and I take care more of the day to day stuff like finances and such. We both moved into the spare bedroom at her house when she came home, and have been there since. We are having some trouble with her wanting to return to independence, but she's not quite able to as of yet. She is physically able, so we are hoping that the aphasia will abate somewhat, she is showing signs of improvement, but it will be some time. We have family, but nothing close enough to be of assistance with day to day care. The tramua of the sudden loss of income, and no longer sleeping in our own home has been quite intense, but we're starting to make some inroads there as well. It will be nice to have other people to talk with who are in the same boat as us.


Aphasia in an instant

Greetings Mightydog!

I was married to the love of my life in September last year, and in February he fell, and suffered a brain bleed.  He never said he was ill, or feeling bad, but one day  on a drive, he just went out of it.  He underwent 2 brain suregeries with aphasia setting in for the long haul.. Now for months I have been caring for him solely.  He didn't want the speech therapist because they didn't really get him.(he felt they didn't understand the things he understood) In an instant I became not only his constant caregiver but his therapist.  Whooo wee. I feel so inadequite. I feel like a failure most days. But, I keep going. Recently, I have been doing something I noticed I have to stop doing. ( I have been looking back at how he used to be, and expecting him to get better soon) my expectations set me up for failure, I think, and then it leads me to frustration, loss of sleep and I become a not so fun person to be around.  That said it's easier to say that than to do it.  I just keip on keeping on. hoping for soon there to be some interaction that is more adult in nature.  I understand right where you are... just remember, it's an awesome person who can step up for a loved one and get it all done, so that the person you are caring for can concentrate on getting better.  You're doing a great thing.


kat915's picture
patience is needed

I just joined the caregiver group.  I just need someone to talk to.  I'm taking care of my 92 year old mother in her home, i've been with her for 2.5 years now.My father passed away 2/20 of Alzheimers, my mother being his primary caregiver and me taking care of them both.  I'm 63 years old and working full time.  Mom had 2 strokes in 12/21, affecting her right side (minimally) and her speech.  She has been in and out of the hospital at least 3 times since her strokes with 1-2 weeks of rehab to follow.  When she comes home, speech therapy and sometimes PT are scheduled 1 time a week.  I am left to do everything else.  I have no siblings so it's all on me.  I don't want to quit my job, I depend on this money as it is only me.  I try to do the best i can but it's getting harder every day.  I'm tired when I get home, and just want to rest for a few minutes but mom is ready to eat, so i start cooking, then clean up, have yard work to do, laundry and am just plain exhausted.  I am on Family Medical Leave so I can leave as needed.  I love my mother dearly but sometimes i feel resentment growing and i don't talk to her like i know i should.  Her Family doctor asked if she thought about going to assisted living and she said "absolutely not".  She doesn't even want anyone in the house to help her, and help me, when I am at work.  Last week she fell and was on the floor for 4 hours.  She doesn't wear her life alert that i lay out for her every morning and I found her on the floor, thank goodness she didn't break anything.  I took the next day off and took her to the doctor.  He told her she, and I needed help, that I am under so much stress, that something could happen to me and i wouldn't be able to take care of her.  She told the doctor that she's staying and dying in her home, that family should take care of family and I should be thankful that I have a house to live in. Believe me, I am, but none of my belongings are in her house, everything is hers and i just miss having my own things and the way I want them.

I feel like such a bad daughter, that i should cherish every moment i have left with her, but i'm so tired.  I'm trying to do everything I can, but i'm failing in everything.  Is this normal?  What is wrong with me?  I look at my mom, she is so frail now and I can't believe that i'm being so inconsiderate.  I feel so bad for thinking of myself, for not talking to her sometimes, that i want some kind of life back, she sacrificed so much for me.  I know i need to get help in while i'm at work, whether she likes it or not. Although she is slowing down, she has very little dementia. I feel she forgets many conversations and only hears certain things.  I guess we all have some selective hearing.

I just want to know if the feelings i'm having are normal, am i overreacting, do others feel this way too.


NicholeGoble's picture
Hello, kat915 -

Hello, kat915 -

Welcome to the Care Chat! And thank you very much for sharing your story. I think many can relate to so many of aspects of your experience. Some have shared stories of caring for both parents or more than one relative/friend at once. Others have shared about the difficulty when a loved one doesn't want additional help in the home and the hardship that can have when it comes to managing the day-to-day aspects of cargiving (and feelings of anger, frustration and resentment that may bubble up).

These can be some of hardest things for caregivers to talk about for alot of reasons. Voiu aren't alone and I hope others seeing your post will feel inspred to share and reply. '

Thank you, again -

Nichole @ CAN

Don't worry, you are TOTALLY normal.

Hi Kat,  You are doing GREAT.  It's a terrific strain, what you are going through, and you didn't even get a T shirt :-) I bet!  I took a similar caregiving journey a while ago, felt very similar ambivalent feelings, so I think I can say this with confidence:  you are a wonderful daughter and your Mom is lucky to have you, as much as you are lucky (in some respects) to have her!

About work:  have you asked about whether you could work reduced hours, or fewer days, not QUITTING, but not working the full schedule a non-caregiving employee would?  Or can you arrange to telework some (don't know if that really reduces your workload, though). 

I hope that you find some ways to take it a little easier, as time goes on.  You really deserve it, and your Mom will feel better if you're less stressed, even if she can't or won't maybe admit it!

kat915's picture
weeks later

Thanks for the encouraging comments.  They are really appreciated.  I did get a home health agency and started that journey.  The caregiver came Tuesday and Thursday, for 2 weeks, and I've already had to cancel her.  The first day i noticed she didn't take kindly to the small dog my mom and i have.  We told the agancy that was a must have---they must like dogs.  I came home from work the 2nd day and noticed my dog limping.  Mom said "Jane" kicked her and pushed her off the chair.  I gave "Jane" another week, noticed my dog was scared to death of her and my mother said she wasn't nice.  Back to square one.

The agency is working on another caregiver but my mother doesn't want anyone in her home. She is getting weaker, she now wears her life alert necklace, but still hesitant to use her walker.  So i am here at work, worried about her being at home alone.  Some neighbors are with her right now.  My question:  Do I pursue another caregiver against her wishes?  Is it negligence on my part for leaving her 5-6 hours at home?  I call and check on her and get home by 2 pm.  I work at a hospital in healthcare so it's hard for me to work from home.  Mom feels relieved that no one is coming to her house.  All she wants is me, which of course, puts so much pressure on me.  I just want to know i'm doing the right thing.  I don't feel good about leaving her alone but she does seem happier.

Exhaustus's picture
Work or Stay at Home?

It's a tough choice to leave your mother for a few hours for whatever reason.  I'm assuming you need to work and you want to work.  It's a choice between option 1) staying at home and giving up the income and interaction that work creates, and option 2)  going to work and leaving your mother alone.  You can't be in two places at once.  It's tough not being able to work from home in such a situation.  I was able to work from home for a while, but now I'm not able to earn much income at home.  I could make money traveling on the road for a few weeks at a time, but that would require spending so much money on constant care for my mother (overnight) that I wouldn't really make money.  Plus, she would be out of my sight.  And as your experience proves, one can never know what type of person is in charge of mom -- even if they are a professional.

I won't ask your age.  I'm 60 and my mother is 94.  Taking care of a parent is one of the heavist burdens one can be saddled with.  No, it's not negligence to do what you're doing.  The risks are too great if you hire an outside person.  If your mother wanted outside help to come into her home, okay.  But she clearly doesn't.  If you are the only child that can live with her, you're doing all you can.  That's my situation.  And if you're at all like me, the challenge to stay positive is overwhelming on a daily basis.  Good luck with that challenge.  I'm sure you deal with similar emotional battles in your daily life.  But you're not negligent.