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Caregiver Guilt & Regret

GNT1981
Posts: 11
Joined: Jan 2019

My poor wife of 37 years was diagnosed with stage 4 lung cancer that had mets to her brain in the form of 20 tumors. We got this devastating diagnosis 2 days before our 2nd daughters wedding which she missed and I trudged through broken hearted all night. My wife had immmediate surgery to have a shunt placed to alleviate the swelling. We were told in curable and I was told she had 2 months. After a week in that hospital downstate we got a flight home to Buffalo where we had just purchased our beautiful retirement home to be with our older daughter and grandchildren. We had just moved in March 2018- the wedding was June. We went to Roswell Cancer Institute where they set her up for 10 radiation treatments to be followed by 3 chemo- But that Dr told me at the most we would be looking at weeks. We took her home after radiation was completed into home hospice. We had her home for 3 weeks before she had to be put into inpatient from which she passed after 8 days on August 9th.

My 2 sons were with me helping with the caregiving and it was a 24/7 battleground or emotion-worries-fears-anger-outbursts-fatigue etc... My wife never slept and at best she would go for 2 hours and then bounce right up as we were always exhausted.It was alot and we did the best we could but my regrets came from the fights with a person who had changed completely. My wife treated me and the boys like her servants. She was very demanding. She was spending her time online buying things-and trying to do the banking she would not give up. She was a pesron none of us knew.

How could that be? How cruel a fate that this wonderful woman had been taken over by her brain cancer and changed so much. it was so sad but I would get into fights with her about the money-finances- she was buying things like crazy-running up credit card- overdrawing on the bank account. This was a once frugal excellent in charge banking person who had gone wild. It seemed as if she became something she never would have been-almost demonically?  I was so scared and angry and when I saw what was going on I lost it. She accused me of being a Nazi- telling everyone I was mean and out of control. Oh we had some horrible battle of words and insults back and forth. I just lost it- I was tired -scared and beat down. Mostly depressed. I had to deal with her and then at same time would run out of the house to make funeral arrangements- It was absolute shock and awe! This was supposed to be happy retirement and we went straight to cancer hell.

All I can say is so much went on- she changed- we took her out to shop at Wal-Mart just to take her out of the house and she ran somebody over in the aisle with her motor cart-she did not care and it was horrible. The woman rightfully went at her and then at me. We took her out to eat at her request and she acted so strange and was demanding and rude to the waitress. She then proceeded to unload almost an entire can of whipped cream on her pancakes as I frantically said "enough-enough". She was the one out of control and not dealing normally. It was just horrible. My son and I could not leave the restaurant fast enough. 

Now after all this I am in month 5 of grief and the regrets are huge- we tried but we failed. We did what we could-was it enough- we loved each other so much for 37 years but for 3 weeks I was her servant and a pain in her ***. All I was trying to do was take care of her! We worked with hospice and they were great but in the end my sons and I were overmatched-home hospice while a nice thought can be very tough. WE had emergencies with her non bowel movements-she was agitated- and was sundowning-would not sleep- and we gave her every medication they could toss at her. The delierium was so hard to take. Yet for 3 weeks we stood our ground against the disease. We gave her moments we could- we gave her some good times-a birthday-walks in her wheelchair around the neighborhood and in our yard. We did give her all we possibly could. We did all we could till that 4th week when it overtook her and it bwas determined out of of control any longer-The battle was lost. How sad and defeated we all felt as they wheeled her away into the van to go inpatient. She all along in denial-saying it was just for some rehab and she would be home and us doing same thoughts to her. It was just a short respite-though we knew otherwise. Sad how very sad.

The only thing my kids said was that with all the fights and words she never even knew what she was doing-saying-It was that bad. She accused me of trying to kill her to people and family! I was a mean nasty Nazi not letting her do anything. She wanted to call the police on me. God I was not doing anything wrong nut she was totally paranoid and she was the aggressor-the agitator. I was just trying to survive every day.

Doesnt matter as now I live with it all every day-full of grief and regrets and thoughts- Did I do this right? Why did I do that? Nothing but fear of failure all throughout.

The saddest thing is she was stolen from us not just too soon but also how the disease changed her into someone I did not know. I still loved her- she was still the one soulmate-but she never seemed to feel the same- she was gone from us well before she passed away.

I know this is long and kind of all over the place and I have missed many moments here but I just wanted to get this out and wondering if any out there had same things happen during their caregiving. For me the saddest thing is that I brought my wife to Buffalo to retire and ended up having her cremated after her only enjoying 2 months of the beautiful home we bought. We missed it all-those 20/25 years we thought we had left. That 40 and 50 year anniversary and now the clock stops for good at 37 years this Valentines Day. I miss her so much-my days are hell- I have given up on God- I am lonely- and spiteful of seeing couples that should have been us. But the changes she had during it all along were as tough as anything. 

I hope you are still with me and would love to hear of anyone had simiar issues as caregiver with the love of their life that became someone they did not know? How long will these regrets  last? I dont feel they will ever end.

accordiongirl
Posts: 63
Joined: Sep 2018

Your story breaks my heart.  i hate that you and your family had to endure this cancer battle, and i hate that your wife suffered so much.  What i hear you saying is that you feel guilty for not doing "more" for her and for the way in which you handled the last weeks of her life.  Please remember that you were not dealing with the love of your life of 37 yrs in those final weeks - you were interacting with a "brain gone bad" due to disease.  She couldn't help it and you were suckerpunched by it.  From what you say, there is nothing you COULD have done to have had your wife back the way she was - her brain simply wouldn't allow it.  i really ache for you and hope you are able to look at things from this standpoint:  you have nothing to feel guilty about UNLESS you personally placed that disease in her brain and CAUSED her to have these behavioral changes.  Since you DIDN'T do that, it's NOT your fault. 

A lot of what you describe is classic "brain issues" behavior, whether from cancer, Alzheimer's, other types of dementia, brain injuries, etc.  She couldn't help it and you couldn't, either. 

Can you give yourself the grace of recognizing that you STAYED with her, cared for her, and did what you could for her for as long as you were able?  i think you're pretty heroic, actually.  In all the grief of watching your lovely wife suffer, you also had to celebrate your daughter's wedding, be there for your kids as THEY dealt with their mom's illness and issues, and you had to take care of her through all of what YOU were going through as a result of this dreaded disease.  Stop beating yourself up and try to gently pat yourself on the back with a "we did the best we could with what was going on" message.  You deserve it.  You deserve peace.

Does life suck?  Hell yes.  It is NOT fair that you lost your wife and all of your retirement plans with her will not be realized.  It's awful.  Anyone tells you otherwise, just ignore them.  You are in the midst of deep, painful, agonizing grief.  Please be patient with yourself.  Be kind to yourself.  And don't put demands on yourself - or others - that might be more than you/they can handle right now.  i've had more than my share of grief and grief processes.......i don't know what YOU'RE going through specifically, but i know grief.  And i know that sometimes the best you can do on any give day is to continue to breathe.  If that's all you have, then do that.  Maybe tomorrow will be better.  Maybe it'll take more than that. 

And i would REALLY encourage you to hold off on hating God or other couples you see or nursing your bitterness towards the world.....for awhile, anyway.  Not saying you can't or shouldn't be angry.  Hell, i'm mad FOR you and i don't even know you.  Of COURSE you're pissed.  Be pissed.  Be mad.  Be all the emotions you need to be as you walk through this loss.  If you can stop yourself from resenting others who have partners, it will only HELP you in the long run.  Bitterness won't bring your wife back.....but it WILL take large pieces of you away - away from your kids, your family, your friends, yourself.  And a woman who was married to you for 37 yrs and was the love of your life deserves a better legacy than bitterness, wouldn't you agree? 

i'm so sorry this is all so painful for you.  i hope with all i have that you have good support around you.  Please try not to push them away.  Accept any help, friendship, support, etc that people offer.  And if you feel you need more, seek it.  Talk to someone - a pastor, a counselor, a grief support group.  (NO one will understand you more than a support group with folks who are wearing similar shoes.)

i hope this all doesn't come across as a lecture - it's not meant that way at all.  i just had to write to you after reading your post.  i hope you will one day find some peace.

~ accordiongirl

GNT1981
Posts: 11
Joined: Jan 2019

Thank You accordiongirl for responding. I started to well up not far into your reply. I cant tell you how much I worry about what I tried to do- yet also knowing I/ we did all we possibly could. I got off the phone with my son not long before this and we both spoke of the same thing. It was a truely impossible time for guys like us-totally blindsided and unprepared but tossed into the blender on full speed. So much done in such short time. We also acknowledge in it way a blessing of the expediency of her disease. She never really suffered any paid except toward her last few days at home. Her worst issues were 3 emergencies because she was never able to get a bowel movement and we were instructed after 3 days to call that in. The last time we called was when the nurse made the decision she had to go inpatient. The prior time a week before she actually was stuck on a commode for 4 hours! They nurse help was shorthanded and she refused to get up-saying she will wait. Imagine that 4 hours we waited and she was a patient darling about it- I was the nervous wreck. I never mentioned that perhaps the hardest thing was she never knew she was dying. Oh sure she got the diagnosis and had a shunt put in. But never was time discussed with her. That was with me only. We all felt she never accepted that she was dying and in fact told all the nurses and Dr and priest that she was going to live to 101 and beat her "Aunt Dot" who lived to 100. She NEVER waivered. It was only a day before she lapsed into her coma as inpatient when she looked at me and asked "am I dying"? I could not do it and I said " no please stop with that" and she just looked down. It was if she were testing me and at that point no way would I say it-what would it mean at that point. This woman who only 2 years before went down to Florida and was my rock as my Mom passed away and she sat vigil with me then-and as I was doing now with getting her water-ice- call the nurse. She had to have known..but had the will and strength to never accept that she was dying until she was taken by coma and it was just a wait from there-never to hear her voice again or see her eyes look at me. Yes it was not the woman I so loved for so long-but it still was to me. We fought the good hard battle- I referred to our LR/DR as our Gettysburg after it was all done as we set up the lower level for her. In fact I even ordered a stair chair for her when she first got home- so she could go upstairs and she was so happy and excited when she saw it. But sadly she only used it twice and it still sits there a forlorn sad reminder in my stairway. I always cried to the Hospice ladies " My God we are just guys-what do we know about this we are just doing it all by gut instinct and out of love". What indeed could anyone have known-there was no training it was bring her home and we will set up and be with you to go over everything. But wait My God this was our retirement-now I am doing what with my poor wife? Handling the meds was tough- when she needed to go to the bathroom it was an exercise of love with one son holding her up while I got the commode and assisted her to go and the other son would help to as physically it would have been tough for me alone. I was so fortunate to have my sons age 28 and 30 with me. It was so unfortunate what they had to see-hear and endure. The battles of shame with false paranoid accusations at me and me having the nerve to lash out at the poor soul all out of fatigue-pressure and frustration. But as my sons assure me the words exchanged meant nothing and she never showed any emotion. All that was stolen from her. As for my battle with God- I have plans to get back in good with him but for now so many unanswered questions- thoughts and a little bit of laziness on my part. The other fortunate couples? My apologies I harbor no hatred- its more an envy-jealousy. I feel like going up to them and let them know how lucky they are in ther 70s-80s still together- that was supposed to be us. I am going to Hospice counselor and she has been helpful-yes- but when I come home its just me and all that help seems to just be temporary-but it does help. I went to a widow and widowers seminar and that was a bit tougher. But still got through it. How I hate the words widow and widower. I never liked them we had no reason to use! I will probably continue to beat myself for awhile-thats just me and its always been that way. I was as my wife would say my own harshest critic. But thank you again for your thoughts- I just need to hear from someone-anyone as her family has basically gone deaf and I have not got 1 call since she passed. I feel as if my own daughters are trying to say "move on a bit and stop with the negativity". But they were not here 24/7 during that time. They were able to come and go with visits- they do not have the"bond" that my sons and I had fighting for their Mom. They did not see what we saw- hear what we heard. Its different for them. Now its different for all of us and for me especially this "new normal" is just not acceptable. Yes I accept she is no longer here but I do not accept why and why now and why couldnt God have given us just 10 more years? Something. Yet I also realize we were fortunate as I read so many suffering even more horribly for years. I do not know how some could handle that. The 2 months we got from diagnosis ran fast like lightening when it was over but felt like a month wrapped into every tough hard fought day of no sleep and proper rest for any of us. Yes I agree with your "heroic" comment. I told my sons after the funeral was over and family all scattered so fast after the brunch after her mass. I told them we were heros- we were there for her-we did all we could- it was you that held her- you that was there on night shift- and me doing all I possibly could. She will always remember what WE all tried to do for her. We did get some smiles- some laughs from the changed person. Every once in awhile after a fight of words she would still say to me "kiss me" and I would and hug her. Its as if she knew but she could not control what she had become. God how I miss her so much. I kiss her ashes good night and good morning. Sometimes not too bad but others my flood gates open and I deny/ resist cannot believe she is gone. The night to get to sleep is tough but waking up alone in our King sized bed its as if I am adrift alone on a raft in the vast ocean. I know I have to do things to get better and I do try but I always go back to being depressed and sad and always thinking of her. I have my daughters-sons and 2 grandchildren- a dog and 2 cats. I am just not ready yet to try and become the person you say she would want to see. That will eventually happen I know because it must but its just too raw and fresh right now. Then I read so many saying they have been like this for years-2,3 and some even 10 years-and still some it never ends. So I reach out like this hoping someone latches onto my story as you did and can give me some words to help let me know I am not alone.I am very grateful you did!

kmall
Posts: 7
Joined: Jan 2019

I applaud you sir and consider you heroic as well. Hold your head high and carrry on as best as you can. Be there as much as you can for your family. Things WILL get better. I can promise you that. Cherish the love and moments you and your wife had together. 37 years is a very long time. I know itthe is hard now and could'nt imagine being in your shoes but as the above person wrote so beautifully to you - do not taint the legacy of your love for your wife with feelings of regret or bitterness. God works in mysterious ways. Not always the way we had planned or invisioned but he gave you a beautiful love with memories and children and now grandchildren. Set an example for them on how to handle lifes adversities with grace. I pray for you and hope that you do find the peace you so richly deserve. All the best, Keith 

GNT1981
Posts: 11
Joined: Jan 2019

Thank you Keith!

I appreciate your thoughts and taking the time to read my topic.

kmall
Posts: 7
Joined: Jan 2019

You bet. I sincerly hope that opening up helps. I'm the first one to say the road you are on will never be easy. I lost my best friend of 26 years just over 7 years ago. I met him when I was 15 and he was one of those people that comes around once in a lifetime if you are very lucky. And I was. There isn't a day that goes by that I don't think of him. Sometimes its hard to fight back the tears and sometimes I can't. But even better is when those memories put a GIGANTIC smile on my face!! I even find myself laughing at all the good times we had. You can NEVER change that. Try and focus on those times as much as you can. For me he inspires me to go on and take chances. I posted my story about him in a few of the other boards here. Read it if you get a chance - he had almost every cancer imaginable. I posted under Bone, Leukemia and MutIiple Myleiod. I can't imagine losing a wife. Especially with the love you described. Keep pushing forward and remember that SHE would want the BEST for you. No matter how that last period of time ended. That wasn't her. She was ill. You did everything you could. God speed my friend!!

accordiongirl
Posts: 63
Joined: Sep 2018

You're SO not alone in all of your feelings!  i'm glad to hear that you "get" some of what i was saying.  And clearly, you are nowhere near ready to even consider other suggestions i made - and that's okay.  There is NO timeline on grief.  Don't let anyone tell you that you "should be over this" by a certain amount of time - it's hogwash.  You'll be through it when you're thorugh it and not a minute before. 

i was where you are now in your thoughts about how "God could have given me more time".  For me, it was when i lost my baby.  i was SO angry at God for "taking" my baby.  i hated him.  i hated other parents with their babies or their pregnant bellies.  i hated that babies were born to mothers who threw them against walls, dropped them on the floor, neglected and abused them in ways i could't even phathom - and yet, here we were, loving parents who SO wanted this little girl, and.......she was taken from us before we even had a chance to know her.  It took a LOT of time to heal - and the best thing i did for myself was to finally recognize that there WASN'T a timeframe - that i WOULD hurt for a very long time - and that it was OKAY that i was not okay.  (i also found a terrific grief counselor who helped me sort out SO much - i'd recommend it for anyone who has lost someone dear.)

And i understand your issues - and your son's feelings - about some of the care that your wife required.  My dad died of lung cancer 7 yrs ago and my mom and i cared for him.  i actually took control of the care as my mom isn't a "take charge" kind of person and doesn't drive.  i had to do things and witness things that i didn't want to do - after all, it was my DAD.  But he needed me.  i didn't do it all perfectly - and some things i just couldn't do (as much for his dignity as for my mental state), but i did the best i could.  i still struggle with certain things - telling myself i should have done this, might have done that, etc.  But it'll eat you up inside if you allow yourself to do that.  (You and i sound a lot alike - i am the FIRST to blame myself for anything and the LAST to give myself a break when it comes to this stuff, so i "get" you.)

A year ago, i lost a dear dear aunt to Alzheimer's - she was in her 60's and i was one of her caretakers.  There was a LOT of family conflict (i won't get into it) that caused great heartache.  SO many things that should have been different for her and her care and had i been allowed to fulfill my duties as her health care agent, her suffering would have been SO much less than it was.  My guilt over not being able to change her situation, her pain, her confusion, her angst......well, let's just say i'm still working on letting myself let go of that "responsibility".  What i DO know is that in the midst of her suffering, we did what WAS in our power and we brought her great joy with our nightly visits, the music we listened to - and danced to with her, the laughter, the hugs, and accepting her where she was and not expecting her to be someone she was no longer able to be. 

My mom is dying of throat cancer - she's opted to not have treatment - so i'm facing that.  i am her sole caretaker.  i am immensely grateful to her hospice team for the support they are giving her, as well as myself.  We have some rough and quite honestly, awful road ahead of us.  Two months after my mom's diagnosis this fall, i lost one of my dear friends to cancer.  She fought so hard and succeeded many times, but this time was too much for her.  i find myself reaching to call or message or tell her something, and.....she's not there.  It's tearing my heart out, but to be honest, i haven't had the time to grieve for her.  My mom needs me and so that grief is on hold.  But i miss her so much.  i miss my aunt deeply.  i miss my dad with everything i have.  i ache for my baby.  i have a seeminly neverending list of people dear to me who are gone.  i miss them all.  And soon i'll have to add my mom to that list.

i tell you this not to garner sympathy, but to help you know that you're not alone.  To help you know that others have walked through it and been through what you're going through.  i won't attempt to tell you how to feel - i'd hate that if someone did that to me.  All i can tell you is that we're here.......we can listen.  And it's OKAY for you to feel all these emotions.  Let yourself.  Allow yourself to do what YOU need to do - don't think about what your daughters need - do what YOU need to do.  And remember that everyone handles grief and loss in their own way.  When my dad died, i felt like i couldn't be emotional around my mom - i needed to be strong for her.  And i couldn't be emotional around my 14 yr old daughter - she and dad were SO close and she had such a hard time with his death.  She also needed me to be there for her.  It's possible that your daughters are feeling that they need to put up a front for you.  Or maybe they don't show emotions well, or maybe they're still trying to process the idea that their mom is gone. Or maybe they don't know how to console the man they've always looked up to - their daddy.  They have their grief, you have yours.  Be patent with them, too.

i'm sorry if i rambled too much.  i just feel your pain coming through the computer and i want to make sure you know that someone is listening.  You are not alone.

~ accordiongirl

GNT1981
Posts: 11
Joined: Jan 2019

No you are not rambling-Its all important and I think you for taking the time and consideration to reply. I have to admit that in what I have seen and heard from many. I too would not want a grueling treatment program just to "live"(?) a bit longer and no guarantee of that. I was blessed to have Hospice be with us . I know myself now in same situation would not have had the treatments. I think a diagnosis of 6 months or less can get hospice treatment? My wife got 2 months and I often wonder did the radiation improve her or not? In many ways I hear its a contributor to personality change-when dealing with the brain cancer. Hey what do I know? But we did what we were told and did not debate with the oncologist. We went with "the plan".  I am so sorry to hear all you have gone through but understand how you were relating to what I wrote. So so sorry to hear about your Mom and can only hope that all goes as well as can be with regards to the comfort hospice does bring. They do get a bad unfair rap from many. But not me I believe in what they do and realize the impossible position they are in. They were total angels to my wife and brought her more comfort and good feelings than I could have done. Hey I did my best but they provided her relief from me and she could relate to them being women and helping her in a way I could not. I know your Mom is in good hands. Please keep in touch.

kmall
Posts: 7
Joined: Jan 2019

Your words and advice to the above poster couldn't have been more on target. I was going to respond directly but I don't think I could have come close to the eloquence your thoughts and writing displayed. I lost a loved one to cancer several years ago. A best friend who was closer to me than my own family. Although my story is much different there are aspects that I can relate to. Even to this day more than seven years later that feeling of hopelessness still haunts me. Of course there are other emotions like guilt, regret and remorse. My story took years to play out so there was time for me to spend with my friend to try making the best of a very tough situation. Having someone go through what this gentleman went through so quickly must be very overwhelming. Thank you for taking the time to properly address this person in their time of need. You are truly an angel!! 

GNT1981
Posts: 11
Joined: Jan 2019

Hey kmall- Yes it was awesome advice and thoughts. I hear yours too and can fully understand even so many years later with thoughts of remorse-grief and hopelessness still coming up. I have no such thought that this is just going to end-no matter how many will wish that it will at some point I am sure. Its hard because even now some give me the impression I should talk about anything else but...Too bad for them. Yes the quickness of so much happening in so little time was at times overwhelming. But honestly so much was just about taking care of my wife as best I/we could that we just did it without thinking about being overwhelmed. Though on hospice last emergency visit that is what they did see and made the decision then to bring her as inpatient. It was a valiant effort and very proud of my sons help. I dont know whats better and really of anything is- be it faster or longer- its just a brutal horrible unfair uncaring disease. I think no matter the time you deal with it-its still in the end overwhelming. I know that years from now I fully expect to continue having the full set of grief items as you note. After 37 years marriage and 44 years of love-I would not expect anything less from myself.

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