Can't forget the last days, feel terribly guilty...

[notkate]

My mum died in April.  She was in her early sixties.  She'd been trying to live through and heal from cancer for 8 years, but it had spread all over and she had deteriorated a lot over the winter...  

 

The long and short of it is that she was on hospice at home in the end.  And she would have chosen assisted suicide if it were an option, but it's not where we live.  She was in really rough shape -- unable to speak or communicate effectively, so we were just guessing about what she wanted or needed.  First her voice went, then her strength to lift her arm to point, then her eyesight.  But she could groan, and was still trying to communicate.  

 

It was horrible.  My dad and brother and I sat with her, took turns so one of us was up with her all night long -- leaving her for a few hours here and there just in case that was what she needed to let go -- but she kept on keeping' on for several days with no sleep, unable to communicate.

 

I feel horribly guilty.  Guilty that we didn't realize that could happen.  Guilty that we hadn't come up with a better plan.  Guilty that I couldn't figure out what she was saying or what she wanted so many times the last few days.  Grateful that the one time I was sure what she wanted (to have my brother sit with her), we were able to make that happen.  But mostly, all I can think of sometimes is how awful it was at the end, and how badly I feel I failed her even though I was trying so hard.

 

I don't know if I can ever forgive myself.

 

I am terrified of ending up in that situation again -- with my dad or my husband.  I can't do that again.  I just can't.  

 

[cindyjane]

Hi ... I am so sorry to hear what your mom and family went through.  Your dad, brother and you did all that you could.  You were there.  I had a few "what ifs" after my mom passed on.  I wondered if I could have done more to make her feel better or more comfortable but in looking back I know that I did all that I could do at the time.  I know in my heart that being there with her was important to her, even when she could no longer communicate that. 

 

Please try not to be hard on yourself and always remember that your mom had you with her during that difficult time.  Take care.

 

Cindy Jane

[Sbelavek]

notkate,

 

You replied to me in another thread, and I found your words there comforting.  DO NOT FEEL GUILTY.  You did everything you knew how to, and nothing your poor mom experienced was a result of anything you did or didn't do for her.  It was the process her body went through to shut down.  Your mom knew you were all by her side, and that had to be a comfort to her, as helpless as she was.

 

My mom was much the same.  We had hospice in my home for 5 days.  On that first day, the hospice nurse told me that she could pass anywhere from 24 hours to 5 days from now.  We were shocked! My mom's bowels gave out on her that day.  Within hours, her legs gave out.  She could no longer walk.  By that evening, her skin had started to become mottled around her knees from poor circulation.  It downward spiraled from there, and every time I walked into her to sit with her, a new symptom began.  It was awful.  I have images of her dying in my head that I will never, ever forget.  My mom groaned her last day, as if she were trying to speak to us but we couldn't understand her.  We just kept saying the same things to her- that we loved her and it was ok to let go.

 

I have had tremendous guilt as well, but it hasn't served me at all.  I felt guilty over waiting to get hospice in my home so late.  Guilty over playing "nurse" to her when maybe all she needed sometimes was a hug.  The truth is, we tried, and as best as we knew how.  This was the first time I had ever been through this, and with somebody I loved deeply.  It was by far the most painful experience I've had.

 

After being on this forum for weeks and reading other people's stories, I have found some peace in A) knowing my mom isn't suffering any longer, and my siblings and I got to be there consistently in her final days to tell her we loved her and to say goodbye.  It's all I have to hold onto when I am feeling at my lowest.

 

Release yourself from your guilt.  Your mom would not want you to carry that burden, especially when you did all that you could!  Hang in there sweetie. 

[Sbelavek]

notkate,

 

No idea where the smiley icon came from, apologies.  I'm nursing my newborn while typing, so I must've hit a wrong key.

 

 

[shoeprincess13]

I know in time I will be able to talk and laugh more when I speak of her, but right now all I feel a sadness and hole in my heart, but when I do I visit her gravesite (her second home, as she would joke) I feel a calmness and peace and that because she still there and near me. But then after that it starts all over again.

Shauna, I also have anger towards my in-laws, the both are still living, but are very ill. Father-in-law has diabetes and has his leg amputee 3 years and still sits in a wheelchair and does nothing to live a quality of life. My mother-in-law has had Hep C for over 50 year and still living. I have no relationship with my husband family, but have always been respectful up until now.

Durning my mother illness not one of my in-laws (mother, father sister or brother) reached out to me of support. After the passing of my mom they never came to my mom viewing. I’ve been trying to deal with the anger towards them but it’s hard. I think I’m more hurt for my husband and son then anything.

This has been the main struggle in our marriage!! My husband say he understand how and I feel and excepts my decision on me having nothing to do with ever again, but they are still his family and He doesn't understand my pain and sense of loss.

How do you let go and be a peace when you family member that don’t support you.?

[Sbelavek]

shoeprincess13,

 

That's a really tough one.  My in-laws were similar during my mom's passing.  My mother-in-law almost seemed upset with me for crying and acting distant. My mom's funeral was on the east coast, so no one but immediate family was present. 

 

I wonder if your in-laws lacked an understanding/awareness of exactly HOW to support you during that difficult time, so they just chose to give you your space instead.  It seems immature, but I'm speculating.  My counselor I saw once told me that many people are uncomfortable with death, and respond very differently and sometimes out of character when presented with a situation involving it.  Regardless, it's wrong and upsetting, and of course you don't want to associate with them from here on out because you feel unsupported.  I get it.

 

Maybe have a conversation explaining to your husband that you will support him fully when the time comes for him to go through this with his parents, but you can't justify pretending that everything is hunky dory when you didn't receive the support you needed from them.  Tell him how much you love him and your son, and your immediate family is your main focus and stronghold, but this experience has changed the way you see and think about things.  I'm hoping he'll be able to understand and respect your feeling about it. 

 

 

[MommasBoy]

Dear NotKate,

 

I lost my Mom this past May to colon cancer and.... old age, she was 85. The beginning of May i went with her for her for what turned out to be her final Oncology appointment when it was decided that it was best for her to pursue comfort care. When I pressed the Dr. gave her 3-6 months, 3 weeks later she passed.

 

Two weeks after that final appointment my wife and I drove out to spend my birthday with her, we arrived on Thursday evening and although very weak and a bit confused we were still able to chat and enjoy the evening somewhat. The next morning was very difficult as she barely made it out of her room to her chair in the living room. When the hospice nurse arrived later that morning she immediately ordered a hospital bed which we set up in the living room and by that Friday evening she was lifted into the bed and she never got back up. We started her on oral morphine that afternoon and she never really spoke again after that. The next 5 days were hard on us all, we were all taken somewhat by surprise. We had to keep increasing the dose and frequency of the morphine and I felt as though I was participating in her demise with every dose I gave. My wife and I were holding her hands when she passed and it was the most intense sorrow that I have ever experienced!

 

For weeks afterward I was so fearful that my lasting memories would be of those last days, I replayed the days and hours over and over in my mind and couldn't really see past them. I know that there were moments where she was in pain and uncomfortable before we realized it was time to up the dose again and for that I feel guilty as I always promised her that I wouldn't let her suffer but she knew we were doing our best. She was a registered Nurse for 25 years and had seen it all, she knew what we were in for and that, I'm sure, is what stressed her the most.

 

Its been 3 months this past Wednesday and I still catch myself reaching for the phone to call her and playing back old voicemails just to hear her voice but the images of her last days are fading a bit. I really have to concentrate to recall how frail she had become and the timeline of events is beginning to blur.  I thank God for that! I also don't want to forget it entirely because as difficult as it was it was still something we did together, it's a part of our story and I will forever cherish every memory of her, good along with the bad. 

 

I pray that you will come to realize that you didn't fail her, not by any measure. There is no perfect plan for these situations, the hospice staff will attest to the same, everyone is a little different. You were by her side and you cared for her as best as you could and she knows that. Now let yourself heal and give yourself some credit, you stuck by her side through the worst of it and you deserve to enjoy the good memories as well!

[notkate]

Thank you, everyone.  The common thread in your messages is to stop being so hard on myself, and I've had to think about that.  The only time I wasn't really hard on myself was during a short period of my life when I was doing yoga a lot.  Perhaps I should invest some time and money in doing that again.  It was life-changing at the time and might help again now... 

 

Thank you.