For those of you suffering from guilt, please let yourself stop.

I totally understand I feel guilty because I have always given 110 % in helping caring for my parents my dad died several year's ago my mom lives at home but has round the clock care I live near my mom and go by every day or call my mom recently fell broke arm and has now ended up in hospital with stomach issue I have a daughter who had triplets the day after she went to hospital, my daughter needs me but my mom makes me feel guilty if I'm not at hospital with her and makes snide remarks now when I run by hospital to check on her my daughter was in another hospital in town so running between both i am past exhausted

So many wonderful wonderful comments! I was a companion care worker for many years until I was 75 years old myself. I am now 80… So I have experience on both ends of the caring spectrum. I also helped take care of my mom before she passed. I have care needs myself now although minor issues right now they still cause a strain on my family as I no longer drive to medical appointments etc. Realized or not; acknowledged or not those being cared for carry guilt too. We think: If only I had....fill in the blank....when I was younger my heart would be stronger, my lungs would clearer. I should have saved enough to take care of myself completely in my old age. Etc. Etc. I have talked with the clients that I cared for many, many times about their feelings and there is often a deep feeling of guilt for having the health issues they have. The whole idea of giving and getting care is so filled with guilt and it should not be. I believe truly believe that we are all doing the best that we can.

My partner came into my life in March 2015. When we met, she informed me of her Oligodendroglioma tumor and all that she went through in her life. 2 surgeries, loss of career (teaching) and knowing her situation, we moved forward in our lives. We dated, and I could see her days of headaches and discomfort, but we moved forward. She worked hard, put her house on the market, sold quickly and she moved into my Condo which was easier living.. There were a lot of stressors in her home, as a single women with 4 grown children busy with their own lives, but could rely on mom to still pick up the slack. Over 5 years living together, , she had many days of headache and discomfort, but on her good days, and good weather we would take in all of new England's beauty. We even traveled 2 times to Aruba celebrating her birthday and came back and went to Ireland! Life was ''pretty'' good. Frequent MRI's and many other medical appointments were part of her life. I accompanied her to 90 percent of those appointments as she had a service that was paid for and she had to use it at times.
Fast forward. Our journey in 2018, to her MRI put her on a 9 month Chemo treatment as there was growth of the tumor discovered. We both 'cried' together when she had to take oral chemo because she had not had to do that since 2005. We got thru her treatments, but it was not easy. There were bouts of all the discomfort that comes with Chemo and we made it thru together!!! We journeyed on together. 2019 because of her chemo we stayed closer, no airports and/or distant travel. There were other ailments beginning to creep into her life and together we would work with PCP and specialists and I continued taking good care of her. We had a good relationship and she enjoyed being out and about. It seems when Covid 19 came, unfortunately for her (as other) her world became small. Being Dominican, not being able to see friends, family and be social was hard on her. in October 2020, in my company while home, she had her first seizure in my presence. I had never witnessed a seizure before. We got her to the hospital, increased one of her seizure meds and it seemed to stabilize until end of November. On 11/24, she had another seizure. Sadly, seizures continued. I took care of her, corresponding with her neurologist, new meds, incoherent states, trying times beginning. Never having given care ever, I reported all of my daily and hourly dilemma's to her daughters thinking there would be some intervention. One was kind in stopping by with food, visits, but would leave and I'd be back to being on my own. It was the most challenging time of my life. This went from 10/2020-3/2021. We positioned a commode in the bedroom, and sadly when she went to use it without assistance, fell. I could not get her up. I called the older daughter, she came and then "They" had a plan!! The plan turned out to be, that the 'being the "village'' were going to take Mom to a house where all the family lived close by. It all made sense to me, and thought I could be an integral part of that triaged care. Unfortunately that was not the case. I was not allowed to see her, without permission. Unfortunately it appears, "I could not care for her in my home' but they told me at the time, Mami is (Dominican) better off in the daughters house where we all live close by and it all made sense to me, and I was pleased that there would be family intervention. Now, I feel guilty because I feel that I should have kept her here with me, and done things differently. I have also received 'added guilt' from my partner saying do not spend time with anyone that has a serious illness because you won't be able to take care of them. I was by her side for 90 seizures (alone) taking care of her, day night and not caring for myself. I don't want to feel guilty She is getting good care thankfully from her Children now realizing it is difficult, and sadly, the tumor is growing, unless she feels ok and permits me i can't see her. :(

This is great post, thank you very much for understanding.Great relief after reading these meaningful sentences.

I needed this. Thanks. My mom is good mentally but needs a lot of monitoring to ensure she (kind of) gets proper nutrition, doesn't make a big mess everyday and doesn't overdo it somehow and hurt herself. My teens need me emotionally. Especially my daughter. Mom lives with us in a too small home and I have seen the stress affect us all.

We all love her and feel for her due to her chronic health issues, but it can be taxing. Especially when she resents reasonable advice / limits for her health and safety.

I just realized TODAY part of why I haven't finished completing her Medicaid application is guilt. She periodically reminds me how she took care of her mom towards the end. What she doesn't seem to realize is I was away at college so she didn't have the same responsibilities that I have with two teenagers at home.

She seems to think I should be able to work full time, care for my kids and cater to all her needs no sweat by myself. Have a life of.my own? Not sure she thinks that OS relevant.

She has a caring side. Sometimes she treats us by paying for dinner and her Christmas gifts are always generous. I think the chronic pain and other issues has caused her to be depressed and self absorbed. And maybe there is some cognitive decline but It may just be the isolation. (She won't socialize with other family or even her old friends except every blue moon she will call someone.)

Anyway, I know I can't neglect my own dreams and health or totally marginalize my kids to fit my mom's idea of how I should help her. And ultimately it's better for EVERYONE if I get outside help and/or find a facility that can handle nursing and other tasks so I can fo us on being her daughter and doing more fun/personal things for her.

I wish she understood that, but I have to be okay if she doesn't.

If you made it this far, thanks for reading my vent/mental processing. :-)

The Bible says to honor our parents. How we do that may look different for each family. I trust God to guide me and strengthen me in this journey.
Ex 20:12 - Mt 7:12 - Ja 1:5

We do what we can.

Imho, you must not hold on to guilt as you CANNOT be in two locations at the same time.

Adding guilt to such a prolonged grieving process is just harmful. But for me, I would have to say I have a difficult time controlling it, however I do agree with you. Our best is all we can offer, and we need to remember to appreciate our efforts, and yes, learn from our mistakes. Being supporting of one another (friends, family and strangers alike) is the best gift we give and receive.

Guilt has no part in this journey so many of us face. I agree that parents are responsible for the children they bring into the world. But for us "kids" to feel that we owe them care for sometimes 10, 20 or 30 years is our gift, not our responsibility. In the 19th century the average life expectancy was 30 years; not 30 years of being old, 30 years TOTAL. The explosion in medical skill and care and safer work has created a world of elder needs that has never existed before. Maybe households had multiple generations living together, it wasn't one person running around like crazy from Dr. to store to Mom, trying to manage a family, a job, with no support system. A girlfriend the other day reminded me of the difference between shame and guilt. Guilt is feeling bad because of something I did. Shame is feeling bad because of something I am. We didn't create this world of very old, very ill elders. We aren't bad because current realities make us related to very old, very ill relatives. We can choose to care for them up to our abilities and them communicate with other people involved for help. There's so much guilt and shame in our letters my heart hurts for us. If there was no guilt, how would that smooth out the decision making?
Luv to all.

We say goodbye to our loved ones - who they no longer are everytime they lose ground in this dementia process. It does not negative the love and respect we've given them before their illness.

How many times through the years we've heard "I'm okay, now go ahead and do...." Safe travel.

Thank you so much, I needed to read this. I am that long-haul caregiver, that silent sufferer in the process of transitioning her to a nursing home. Her condition has advanced to a stage where she needs more assistance in her care that I can no longer provide. The "grief" is also palpable...it's hard to see her be less of herself...everyday. I feel like she is taking me to the bottom of dementia with her. My "self" has taken so much damage that I feel like there's nothing left of me and yet I have to force myself up. I have a special needs child that really needs more of my attention than ever, and a family that has suffered with me through this. I no longer know how to feel at this point, but I know "guilt" is somewhere there. It's a long goodbye for me too, but I need to work my way through this, and your post has helped a lot.

Thank you for your post. You are spot on.

I wish you, your mother, your daughter and grandchildren as well as the rest of your family to be blessed with grace, peace and love.

There is no reason to feel guilty. The cycle of life goes on. The old will die the young shall live. None of us came with instruction. When we are born our parents worried because the only have experience by watching our parents so we raise our children by faith.when it comes to the end of our life there are no instructions how to die, how to care for the dying.

I think we all feel guilt to some degree, and for many different reasons. I carried a lot of guilt in me, especially after Mama died back in December. It's gotten much better with time, but when I have the occasional twinge, I simply look up to Heaven and say, "I'm so sorry, Mama," after which I wipe away the tears and go on with my day. Just voicing it makes a big difference.

Feel whatever you need to feel at the time. Honor your feelings. Process them. Move on. People who get stuck usually need therapy to move forward. Clergy can help as well if they are properly trained in counseling.

Guilt and grief are two separate emotions and are often confused. Sometimes though, for a time, they both walk side by side. Social workers that specialize in caregiving will speak of this.

Guilt and grief are equally valid emotions, and if ‘guilt’ leads to feelings of remorse, it serves a good purpose. If ‘guilt’ motivates a person to find a solution to a problem, it is also useful. If ‘guilt’ leads to a path of self destruction, then it’s harmful. It truly depends on the context of a situation.

Every situation is unique in caregiving. There is no ‘one size fits all’ solution. Everyone feels what they feel. There isn’t any point in denial or suppression of what we feel. We must process our emotions instead of saying that we don’t feel them. Therapists will say that we don’t get ‘over’ issues, we work ‘through’ our issues.

Wishing you all the best.

God's speed.

I hope that mom and new baby do well and have no complications.

I hope for all of you that nothing happens with your mom while you are caring for your grandchildren and daughter. It will just be easier if it doesn't but, you know that what will be, will be and we must support the new generations.

I agree that grandma and great grandma would tell you to go and be present for the young ones.

Have a great trip and enjoy your time with the grandchildren. What a blessing for all of you that you can provide this support.

I am glad to see the subject of "guilt" brought up. I see the word used wrongly all the time by people, and the words we use matter. Most OPs who say they feel guilt are really feeling GRIEF, instead. Grief over not being able to do it all, over having human limitations, over seeing the descent of an elder into what seems like a torment. Yet over and over they use guilt. I heard a whole program on grieving on NPR in which grief counselors said it is very hard to move on when guilt is used because it suggests that you can go into the past and had you done it better it never would have happened. It keeps people from processing what they are really experiencing --grief.
Very few take this issue up. I am so glad you had quality support and I am so glad you brought this subject up.

👍👍👍

Thank you for your comments. I agree. There are so many reasons caregivers feel guilty: not doing enough, doing too little, being too far away (long distance caring), placing their LO in a care facility, feeling relieved because they placed their LO in a care facility (after all, we shouldn't feel good when our LO is suffering), etc., etc. It's unfortunate that so many caregivers who make personal sacrifices every day still struggle with guilt. As you say, “ None of us should feel guilty - we are all doing the best that we can in difficult situations”.

A wonderful perspective in a wonderful, honest letter. You are appreciated for your sharing, Dr. Benshir.

Thank you