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Caregiver Guilt
Irma k
Posted: Friday, January 8, 2021 7:53 AM
Joined: 5/20/2020
Posts: 2


 I am new to the community. However not new to the disease. I buried three aunts before the age of 30 with alzheimer's and now my mother this year . My mother had cerebral palsy and was mentally handicap . My father passed when i was 21 at age of 72 and my mother was 20 years younger. I assumed guardianship and power of attorney for her at that time and took care of her for 29 years.  Having said that, we weren't just mother and daughter. I was her Mother and her daughter. I never had a day that i didn't wake up that first thing was her , has she had breakfast, taken her meds, checked her sugar. taken insulin. We weren't always that sick but I always had to do her groceries , checkbook, pay bills, sign contracts, etc.  I was keeping up with her apartment and learning how to make my own at the same time. Somehow with many tears, lots of arguements, lots of prayer.. lord lots of prayer.. We made it . She was 85 when she passed 05/29 of this year. 3 days before my birthday. She even waited till i fell asleep and passed at 06:03 am. My birthday is June 3 . So you can see how close we were. I loved her with all my heart and she was first before me always. 

    The guilt I have is that my brother, 8 years older was on Heroin and god knows what else for those 29 years after leaving the military when my dad passed. He always tried to get mom to borrow, take from me whatever it took to get by. It was never about mom. I was so angry over that. Why couldn't he or anyone else ( grandkids) care about her as much as I did. It was so selfish of them. I would argue with her over it as she always stood up for him with excuses. He could do no wrong.  Now that she is gone. I regret all those arguements, all the bad words, all the frustration i had while taking care of her because i was stretched so thin. I managed to go to college, 1st in my family. Get my nursing degree so i could take care of her better and provide financially for both of us. I got my ADN then moved mom in with me. After 2 years it was obvious we couldn't live in the same house. I got her a prviate apartment in a senior complex 10 minutes from me. I went there every day. AM and PM breakfast and dinner. She didn't know how to do math so she couldn't even work a microwave. I taught her a lot on that . We labeled her meals for the microwave with time to punch in  by seconds... then meds.. once memory starting slipping the last 6 years.. got a lock down box that automatically opens.. cameras installed to monitor her from work.. mind you by this time i had went back to school at night and got my BSN in nursing ... now i am no longer bedside.. And my jobs allowed me to video monitor my mother with my phone and ear plug while working .. so that the sitters that i had in place during the day would be able to contact me.. she swore that she was not a diabetic , no bp issue etc.. always wanting to not take meds or insulin.. As everyone knows the memory worsens and she got very paranoid... swore i was stealing everything.. I had police show up at my job many times saying that she said i was abusing her , stealing her money, sending strangers in her home.. 

All the while , this was the disease. It was so hard..doing it help from anyone but who i paid to sit with her.. I had 4 sitters in the end that i used depending on the day of the week and times due to them having primary jobs as well. I pulled out my retirement twice and left me job twice in order to do so so that i could pay for the sitters. 

I will never complain about what i had to spend or do to take care of her. I would do it all over again. except one thing.. I would NEVER complain again. Just to have 1 more minute , 1 more second, 1 more moment to explain to her what is happening. To let her know i love her. To let her know i was sorry for being so frustrated and angry... I pray that she forgives me... I don't know if i will ever forgive myself though... 

Posted: Friday, January 8, 2021 1:55 PM
Joined: 6/21/2019
Posts: 898

Hello Irma,

If anybody should be asking your mother for forgiveness, it's your brother.

You've gone WAY beyond the call of humanity in what you've done for your mother, father, and aunts.

Caregiving for an Alzheimer's patients has a high mortality rate, and you've survived.  Your guilt is a natural feeling all committed caregivers feel. We want to save our LO, and no matter what we do, the disease mocks us.

Your brother is an addict who is going to need a caregiver one day.

My advice when that time comes? Don't look back. 

Posted: Friday, January 8, 2021 2:25 PM
Joined: 2/24/2020
Posts: 157

I can only say. Bless You. That is a lot of time in your life that you had to care for someone else. 

I did it for over 7 years until my wife passed in October 2020 - I miss her so much. I also feel I should have done better.

Posted: Thursday, January 14, 2021 12:19 PM
Joined: 4/1/2014
Posts: 5213

Thank you for sharing your story and I hope by doing so, you feel some relief in knowing we understand your feelings of guilt. It's strange that many caregivers who did the most, gave up the most, cared the most, are the ones with the guilty feelings while the family members who hardly lifted a finger or even became obstacles don't have a twinge of guilt! 

 I also had times when I was frustrated and angry, but I usually said I was sorry and I think I made amends for those human shortcomings by the many good things I did. You gave up A LOT to be there for your mother. I think she would want you to forgive yourself so you can have a great life going forward. Her love for you out weights everything. So please look to the future and have a good life.

Posted: Saturday, January 23, 2021 12:31 PM
Joined: 6/12/2016
Posts: 2477

Hi Irma, I am sorry for the loss of your mother. Not many people would do what you have done.  You are a remarkable woman and human being. I hope you will forgive yourself and move on. I feel certain your Mom would want you to enjoy your life and have peace. I wish you the best of everything!