Sadness and Guilt

It is late now and I have read the previous posts and the initial comment from the writer on feeling guilty.. hell I have felt guilty too, but then why... because every caregiver has to react to their loved ones needs in a split second .. we get tired, used up, spent and then have to be ever present for our loved ones... not fair, not easy..

I think it's called soldiering on.. that's what we learn to do... like a baby learning to walk, not always perfect, but eventually the baby learns to walk, just like the caregiver.. we get good at the task and then the cancer steals our husband from us... some reward...

I would suggest not to second guess yourself, beat yourself up.. we are not being tested on what we do and how we do it.. take pride in being the best caregiver you can/ could have been.. and leave it there...

Keep on truckin... ladies...

Best

I discovered this post discussion today from awhile back and can tell you it really helped me. Soldiering on... Having to make split second decisions, frustrations getting the best of a caregiver at times. I have lost it on occasion, but in the course of all the time we spend caring, it will happen. Thanks for letting me know that others have the same challenges.

Dear Fredward,

Yes I lost it many times when my daughter was so ill. You did all you could do, I am now 7 months without my beautiful daughter, and I still cry my heart out, life will never ever be the same. I miss her so much. She passed away at home as she insisted, we were with her every minute. Don't carry anymore guilt, try to find peace as I am trying to do, but losing a child, I know I will never really find peace. I take baby steps, everyday, never knowing when I will break down, I have a wonderful doctor who is standing by me to make this terrible situation for me barely bearable. But if she wasn't there I know in my heart I could never even exist. Please see your MD and see if there is something that will help you cope somewhat, and I wish you peace and love. Brenda

I must have missed this beginning thread and am sitting here sobbing reading the replies. yes, we all do things while caregiving that make us feel guilty. I spent the summer making sure my husband went to all his doctor, radiation, oncologist, scan appointments all while he was on morphine. Eventually, he was able to stop the pain meds, and I am truly thankful. Now we are dealing with all the side effects - feeding tube, damage to vocal chord, infections. My whole body seems to be in shock, fear that he will just die in his sleep. He is still in treatment but when we leave the house I am even more aware of just how ill he looks. At home, the world is just shut out and we deal with what has to get done. I am struggling with the feelings of being traumatized or indifferent. Don't know if people understand that --- Is it the realization that he is dying and I will be left alone and my mind is trying to prepare for that time. He is my life and soulmate in this world, and I am wishing that it was me first leaving. My heart breaks for all the caregivers on this board. Our lives will never be he same. Hugs for a good day,

I feel so sad reading the last few posts. I have been neglectful for the past few months - not logging onto CC. I guess I am trying to 'run away' from the grief. I haven't cried since my darling son passed away on 13/102012. Just can't. Yet, I cry when I read other peoples posts. Anyway, I want to agree that it is perfectly 'normal' to lose it sometimes when we're caring for a very ill family member. Why wouldn't we? We are so bound up in every aspect their illness - I think we actually feel their pain. And we must remember - we are only human. I would relive every minute, every second of my sons illness, just to spend that time with him again. But I wouldn't want him to relive his suffering. I pray, I hope and I wish that everyone in C.C. will have a very good, healthy and blessed 2014. Your support was immeasurable during Niall's illness. As I said, I can't cry - maybe I will someday. xxxx

It's ironic how the issue of guilt came up in full force tonight! All day I was thinking about a few times when I was "short" with my Irving before he died! How I wish I could redo those times! But then I need to remember that I did my best as his caregiver and loved him with all my heart and soul right to the end! This guilt is an awful thing for us to feel, and no matter what anyone says it doesn't go away because we can't take it back! Caregiving is so stressful and it is difficult to hold it together all the time! I have asked my Irving to forgive me for those times and know that he was so grateful for all that I did to make his last days comfortable! I mentioned on one of our posts about a time when I truly "lost it"! Actually just sharing that with someone made me feel a bit better! Maybe this new year we can vow to let go of that guilt and dwell on the good things we did for our loved ones!!! God bless you all my friends for this journey we are on is quite life changing! I thank God for all of you who really know what caregiving and loss is all about!

Maxi

I feel so sorry for you.  I do understand.  I have been dealing with the same thing.  I had been my husband's caretaker for the past three and a half years.  I like you took him back and forth to doctor visits, blood transfussions, tests, and treatments.  I had trouble also.  You should be proud of yourself for doing what you did.  My husband had no feeding tubes or oxygen and I know just getting him in and out of the wheelchair and to all these appointments was extremely hard.  So you did really good.  Yes, I too was loosing it at the end of my husband's illness.  I too felt guilty, still do, and there is really nothing anyone can say to lessen that feeling.  You have to believe in your heart that you did everything you could for your husband, you were there for him, you loved him and he knew that.  Don't ever think that he didnt.  I go through thoughts every day of what could I have done differently, what could have kept him here with me, but I realize, I did all I could.  I commend you on being able to work and still take care of him.  I quit my job and stayed at home to take care of my husband.  Financially we were strapped.  He didn't want anyone but me taking care of him, so that's what I did.  I did pretty good, still had little arguements with him, about doing things like he should.  Tried to get him to eat right, take meds and keep mobile, but sometimes you just can't get them to do what they should or shouldn't be doing.  My husband and I were married for 34 years, this September, and it has been extremely hard.  At the end the doctors told me that there was nothing that could be done for him and he would have to go on hospice.  I promised him I would never do that.  He got so bad that I couldn't even get him down the steps and out to the car for his pain medications.  He had to see his doctor every month for pain medications or else he couldn't get them.  That was the only reason I agreed to hospice.  I was not to thrilled.  Felt that I gave up on him.  After a week on hospice, he was getting worse.  His mind seemed to be going.  I couldn't even get him into the shower or into his wheel chair.  He was getting angry with me.  One day, I swear I lifted him 20 times within an hour in the bed out of the bed in the chair.  He wasn't sleeping.  I was up every hour, as they increased his morphine to every hour, and I wanted to make sure he got it on time.  Then, I was loosing it.  I was so tired and exhauseted.  I was in the bathroom throwing up, got so sick, from totally being exhausted.  He would yell into me, are you ok.  Here he is dying and he wants to know if I'm ok.  Since he was getting combative, they put him on a medication to calm him.  So the last three days I was with him were horrible.  His breathing got so bad.  They told me not to give him any food or liquids.  I was a nervous wreck.  I laid by his bed.  He was gurgling and I tried to move him on his side.  I called hospice and told them someone had to come out.  The nurse showed and they wanted to move him from home into their facility.  I said no.  He is dying I promised him he would be here at home, you are not moving.  The nurse and I were not seeing eye to eye.  I called my son and he quickly came to say goodbye to his father.  He was surrounded by his family and friends.  However, I don't think he even knew it.  So don't beat yourself up about not being there when he passed.  He knew you loved him and had always been there for him.  My son is 31, married and has a 10 month old baby and thank God for her, that is all that's keeping all of us sane.  I actually got to the point that I didn't want to go on, but she is worth staying here on earth for.  You have your kids and that is good.  They need you to be there for them.  I am sure they know you did all you could for their dad.  Just try to take each day at a time.  That is what I have been doing.  Yes, I cry every day, some times all day.  My husband left me with no life insurance, no money in the bank, no job, and now the house we lived in (which is my father-in-laws) might be sold.  So not only do I have to live with the loss of my husband, but I have all this to take care of too.  I am looking for work, still found nothing yet.  I know I can't give up, I keep on trying.  You can do this, keep strong, keep busy, cry when you need to cry, but remember, you did all you could do for your husband, and he knew that.  Our husband's are probably up above, looking down on us, and saying what good jobs we did.  This group of people have helped me.  Hang in there. 

bgibby

Fredward, and friends ~

Reading everyone's words as the imprints from hearts ... and hugging each of you from here.  Hearing you all, with compassion.

WHAT IF!  What if the measure of responsibility and accountability from every moment was enfolded in ginormous bold *invisible* letters that speleed out:  YOU, IN THIS MOMENT, IS ENOUGH!

Hey ... you showed up, as best you could, in every instant.  You did your best!  That "best" is all relative to time, place, date, space.  Guilt can only appear when that inner critic replays the moments with judgement, shame, blame.  It's really unfair, ya know ... because you truly gave every moment your best shot in caring for your loved ones.  Some instances you shined with rock star caregiver status.  Other moments, your "best" unfolded with your humaness showing struggle through the exhaustion.  Its in those low moments we reflect back with hindsight and distance to break down every instance and analyze it all ... when truly, you simply showed up and did your "best" at that given moment.  "Falling apart" (or doing things in moments of pure adrenaline fueld by only vapor from waning caregiver exhaustion) never decreased the LOVE.  Never...

In time, may you reframe your moments that you feel are filled with guilt.  All you were guilty of was LOVE, being human, and showing up as best you could in every instance.  You did amazing!!!

Perhaps, Fedward ... perhaps for your husband it was "enough" of a sweet goodbye for him to hear you say "what a good father, husband and coworker he was."  What if THAT was the special goodbye he needed to transition on to the next great mystery!!!  What if for your beloved, it was "enough".

I personally am coming up on three years since feeling my Mom's touch.  She passed from GBM brain cancer.  Her 13 months of illness were filled with alot of challenges like many of us here share in witness.  From every high to every lowest of low, it was my honor to be her primary caregiver through it all.  And if there was one powerful lesson she taught me during that time, it was in watching how she reframed the hurts and would ALWAYS look for the silver linings.  Looking back, the inner critic in me could have a field day if i allowed it.  But then i remind myself what she taught me always ... we don't move through moments knowing it all ... we move through every moment, showing up as we are ... and from there, we can honor reflections by reframing and adjusting as we move forward!!! 

Bottom line is this ... it was ALL done in the name of LOVE!!!

ON WE GO ... dear friends!  On we go ...

Wishing you peace in the new year!  BE GENTLE WITH YOURSELVES, K!!!

De

Wish CC would offer an "edit" ability :)

One last love*caveat of thought for you Fredward.  After i posted my previous message, i forgot to share with you my thoughts about not receiving a "goodbye" from my Mom.  She transition from warm blooded to cold blooded within 24 hours, while her heart beat on for another 10 days through hospice with the awful death rattle playing soundtrack.  I thought alot during those 10 days of hospice, about not receiving "her" goodbye to me .  The way i reframed it was that, maybe i was not meant to receive her goodbye.  Maybe what was really unfolding was not about the goodbye but about the shift for me to keep finding her hello's in many ways that followed since her passing.  When i feel her, or see her reflection in many moments, i say my quiet personalized "hi Mom!"  In many ways, she's never left me.  May sound goofy but i know some of you reading this will understand what i am trying to express.

Anyway, taking you all with me, in my heart, and into the new year....

New Year, new hope, new healing, new hello's to our departed loved ones we invite to every moment!

much love, xo

TO EVERYONE OUT THERE;

I want to thank everyone out there for listening.  Thank you for your words of encouragement.  Thank you for sharing all of your stories.  Although sad, it is good to talk to people who have gone through the same loss as I have.  I am not alone and I am not the only one who has felt such a loss.  May you all have a Happy New Year. 

My son made me a lot of songs that I have been reflecting on.  I especially like the song "I Believe" by Diamond Rio.  Every now and then, softest breath upon my skin, I feel you come back again and it's like you haven't been gone a moment from my side........  If you can, listen to it, it helps me get through.  Peace with all of you.   bgibby