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Life After Caregiving - I lost my Grandma

vanessat's picture
vanessat
Posts: 9
Joined: Aug 2010

Hi Everyone,

I'm new to this site. I wish I had found this site about 6 months ago. My grandma was 84 and had tounge cancer. She had a portion of her toungue removed, as well as some lymph nodes. The Doctors recommended that she get radiation therapy. I slowly but surely ended up becoming her caregiver because I was the closest to her and had the most flexible schedule. I know being a caregiver is extremely stressful, and a lotI felt trapped and alone. The one thing that kept me going was my love for my Grandma. It was well worth it on the good days. I spent about 8 hours a day with her, bringing her to radiation treatments, docs appointments, and just making sure she was ok. The thing is, she does not speak any English, so I was also her translator. She ended up becoming too sick to stay at home anymore, so she spent most of her time either at Mass General Hospital in Boston MA, or at Spaulding Rehab Hospital. At one point her insurance refused to pay for her to stay at Spaulding, they were pressuring us to find another place. I picked Wingate in Brighton, and they were absolutely terrible. We were there for less than a week, and we had 3 or 4 problems from medication issues, to them letting the wheelchair van leave without me. What a nightmare... My trust was completely shattered and I ended up leaving my job temporarily to be with her. From there, she was sent back to Mass General and the level of care was absolutely amazing. I will never forget the kindness of the Nurses, doctors and social workers there.

After a long hard fight with cancer, She unfortunately passed away two weeks ago. I'm really not sure what I'm feeling. At times I feel empty, sometimes relieved that she's not suffering anymore. Sometimes It doesn't even feel like she's gone, almost like it's one of the days I had to work and couldn't see her. Other times I don't feel anything. I'm not sure what to think, has anyone ever felt like this?

Vanessa

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

First of all, i woudl like to say that i am sorry you lost your grandmother. Most of us here have had all of the feelings you are mentioning. Your grief is very new and things are probably a little foggy now. Give yourself time and permission to grieve. We each must do that in our own way and time. I won't tell you that time will make all the pain go away because it doesn't. Time does seem to make it easier to accept and live with, though. At least it has for me. Since I am older than you, I had experienced a number of losses before the loss of my husband in October, 2010. This has been my hardest loss, but I am learning to live in a world without him here. I have leaned heavily on my faith. That has helped me. I have also found this board and the grief and bereavement board very helpful. It helps to know that my new normal is similar to others. Hang in there. Fay

vanessat's picture
vanessat
Posts: 9
Joined: Aug 2010

Hi Fay, Thank you for your reply. Its nice to know that other people feel the same as I do. I was starting to think I'm going nuts when other people around me have no idea what is going through my head or what we caregivers go through. I guess I'm going to take it day by day. The passed 6 months have been a day by day process. "New normal", I've been hearing that a lot lately, perhaps I'll adapt that phrase as well.

I'm not sure about what you went through, but my grandma was in the hospital/hospital settings for about 6 months straight. Sometimes I actually miss going to the hospital. or I find myself wanting to go back just b/c it reminds me of her still being alive. So strange..

Thank you for your kind words Fay, and I'm sorry for your loss of your husband.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I meant October, 2009. I lost my husband after a 6 year battle with cancer. He spent some time in the hospital, mainly after surgeries. He died at home. Even after ten months, my grief is something I am still learning to live with. I lost one of my grandfathers when I was 9. I still miss him, too. Each new loss reminds us of others. That feeling of loss doesn't go away. We just add it to our life's experiences. You are the person you are today because of the people and experiences that have been a part of your life. Your grandmother will always be a part of you. Fay

Emily_S
Posts: 1
Joined: Sep 2010

Hi Vanessa,

I moved from Boston, where I grew up, to Kentucky to take care of my mom through the last two years of breast cancer. She died on August 14, 2010. I was her primary caregiver through not just the cancer but also gastrointenstinal problems, severe anxiety/depression and even some sort of dementia/thought disorder. She was very dependent upon me.

I am 33 and I moved to help her since there was really no better option at the time. Fortunately, I was able to maintain my own happy life despite the intense continual stress, so I do have a boyfriend, friends, work, etc. to fall back on though now I am just taking an extended vacation before I go back to a "normal" life.

I have a lot of the same feelings you expressed as far as numbness, especially as far as the normal grief process. We experienced so many losses in the past 8 months as far as her quality of life (not being able to laugh because of the pain, not driving or swimming, not wanting visitors, and then, at the end, not walking or talking, etc.) that I feel like the grief has been already happening for months. The grief was most intense the last two weeks of her life and the week after but now I am still just kind of numb. I'm enjoying my freedom and unstressed life and that is somewhat guilt inducing.

I too have caught myself feeling like she must still be at the hospital, and even missing the hospital, but not really as it was awful there. I was unimpressed with the medical system though I believe the many caring staff people did the best they could; the system is limited by many opportunities for human error and inefficiency. We are lucky that I am smart and capable and able to have been a great advocate for her throughout.

I also feel disconnected from people who were not truly involved or who have not experienced anything like this. Some people pretend nothing happened. Others just say things like "it's for the best" and change the subject. I just try not to look for support from those people, and get it elsewhere. I feel a little traumatized by the amount of sufferering she endured, and I don't like pretending that it didn't happen, like most people want to.

Anyways, my advice for myself is to just rest, take care of myself, knowing that I did the absolute best I could and won't regret my caregiving experience, and just let time pass. I'm hoping to be able to remember my mother has a whole person, and not just this last awful part.

Good luck to you Vanessa, in finding your healing and people who can support you through it.

Best,

Emily

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