Having A Bad Day

[dlongo]

I'm Deb and I lost my husband in June. He was 57. We moved to Arizona from Colorado at the end of June 2004 and he got sick August 10. He had a total of 3 major surgeries. He lost part of his bowel and came home with an ostomy bag that leaked constantly. I took care of him full time until I went to work part time in January 2005. Then he had his ostomy reversed and started getting better. We went on a cruise Thanksgiving 2005 but when we came home he got sick and we found out his kidneys had failed. They put him on dialysis but he lost his appetite and refused to eat. I tried everything ... they put him on appetite stimlators but nothing worked. For 4 months he sat upstairs in the bathroom and smoked and drank beer. He got skinnier and skinnier. He wanted me to cut my hours down at work but I was too damn selfish to do it. I kept telling him "they need me at work." He didn't say anything but now I realized he needed me at home. In April I had to put him in an assisted living group home because I was afraid he would fall at home. He just went downhill, they were supposed to encourage him to eat but it didn't happen.

They finally called paramedics the end of May because he was having trouble breathing. They put him in the hospital and put a tube in his nose for nutrition. It didn't help. He passed away on June 9. The day before was my day off and I went to see him in the hospital but I didn't stay very long because I wanted to get my nails done. He called me and wanted me to come back to the hospital but the nurse said he was ok and was just mad because they wouldn't give him any water. He died at 7 am the next day. I'm feeling so guilty...I just can't deal with this any more. I didn't even get a chance to ell him I'm sorry.

[LarrysGirl]

Larry called me Deb, my name is Deborah and I wanted to reply to your post. Larry died the day before his 50'th birthday. Way to young. I know you are hurting and it sounds like you are being very hard on yourself. Larry was sick a long time also and it takes its toll on us, the caregivers also. I'm sure you did everything you could for him. It's very hard to watch the man you love get sicker and sicker. This site will help the grief you are feeling. Keep writing and sharing your feelings. Take care of yourself. Deborah

[dlongo]

THanks Deborah,

I was doing pretty good until yesterday. My realtor says I have to start getting rid of stuff that won't appeal to a buyer. I want to get as much for the house as I can so I know that's what I need to do. It's so very hard though. Everything in this house reminds me of Joe. October 7 would have been 11 years since we met. He always remembered that date. Our secret code when he wore a pager was 1007. Maybe that's what's making it hard for me now. We could have had such a great life together.

Deb

[ustwo]

dlongo, I'm am so sorry to find you joining us but know that this sanctuary is a family that understands. Perhaps you can store things rather than get rid of them. I tried once to sell my home but took it off the market...I still don't have the courage to move and don't know that I ever will.

It took me a long time to forgive myself for walking out for ten minutes and not being there when my husband left. We had been up and down fighting his heart problems for 18 years. On that last day I stayed holding his hand for 12 1/2 hours only to walk out for a moment and then he was gone. I let his hand go for a brief moment and he was gone. Remembering that we knew we loved each other is what got me through the guilt. There were times during all the hospital stays that I could have stayed longer but did not. A caregiver gets worn down at times. I remember Gene saying he wanted to ask me to stay one day but he knew I needed to rest. I wish I had stayed...all the moments I wish I had stayed. I slept in my car one night while Gene was in a hospital that would not let me stay in his room or in the waiting room overnight. I love him dearly and he knew that..and the love goes on. I think guilt is a stage of grief. It no longer haunts me. I no longer ask the "what if" questions nearly 16 months into this lonely journey.

dlongo, I am so sorry you are in such pain. So many in pain. Do what you need to do for yourself. And be gentle to yourself. I wish you peace. This is a long journey we all walk.

Always Gene!

Always!

[dpodesta]

delongo

I am so sorry for your loss. Don't blame yourself, I don't wish to sound indifferent, but your husband didn't try to help himself. You needed the job in order to keep paying the bills plus you needed the time away. I know that this sounds bad and is easy for all of us to fall into. You did the best you could with the situation that you were given. I lost my wife to a heart attack April 6th of this year and I to can say that I should have helped her to stay on her diet more regularly, to watch what foods she was eating and so forth. But I realize that I would not have been able to force her to do any of that. Give yourself permission to forgive yourself, that will be the first step in your grief recovery. It is very difficult when we loss someone we care so deeply about, this site is full of wonderful people who have been where you are and are more than willing to help you get through this. You won't be judged on this site we are all here to help each other.

[STOO]

[Deb,

I'm so sorry for the loss of your husband. It sounds like you and he had a long battle with his illness. Being a caregiver is not an easy task. Caregivers need to have a break, to recharge and reenergize so that they can continue to deal with the stresses of being a caregiver. It sounds like you intuitively knew that. Don't be so hard on yourself. It's part of grieving to look back and ask all the "What ifs" and "whys"; I think all of us have felt some sort of remorse for something in the past that we shared with our departed loved ones. Try talking to him now - in your heart. Tell him all that you want to tell him. Or write a letter to him telling him how you feel. These things may help you to sort out your feelings so that you can continue on with this process we call grieving. We all, here, are in various stages of our own personal grief and loss. While we can't know exactly how you feel, we are here to share our experiences and help you in whatever ways we can. Write and share whenever and whatever you wish.

[spunkye]

Hi Deb,

Welcome to this site...it's so helpful to me... to be able to say what I feel and feel that others understand and don't pressure me to feel differently.

Oh, boy -I can understand the guilt you must be feeling. The last three months of my husband's illness, he wasn't thinking clearly all the time and he also could be a real pill. I think back over times when I could've been kinder and more patient - when I WANTED to get away from him (and did), the irritabilities I felt and expressed from time to time -....I remember even thinking one day "I didn't sign up for this" - like I was the one with the problem, when my husband was in the other room literally on his death-bed.

Sometimes I just wanted it to be over, 'cuz I was so exhausted. I saw parts of myself that are - putting it mildly - less than lovely. I have to try to stay away from guilt-tripping myself. My consolation is that I prayed a lot during his time of illness - and mostly I prayed to be more patient, kinder, and understanding...and I have asked for forgiveness (and still do from time to time) - and I do believe God has forgiven me - and Dick has forgiven me too.

The times of the illnesses are very stressful and unsettling - not only for the sick person, but for us as well. I really believe it takes superhuman strength to get through it - and God knows we do the best we can!!

Love, Benita

[kayc]

Deb,

Welcome to this site...it is a very comfortable place to find caring and understanding and also a bit of encouragement when it is most needed. My husband George died just five days after his 51st birthday...I still had his bdy. banner and cards up. I was gone to my sister's reunion and he was in the hospital with five blocked arteries before I could get there...there were people there visiting and then they rushed him to ICU...when they let me in he was asleep...he awoke having a heart attack...they made me leave, it was his final one. We hadn't known before that weekend that he even had heart trouble. It has killed me, not being able to be there when he was dying...we were always there for each other in life and I wish I could have been there to help usher him into heaven. But you know what? We all love our spouses and would have done anything in the world...and usually did...we could not have known they would die when they did, and all the more so when they were so young. They wouldn't want us to be so hard on ourselves, they would be full of grace towards us and would feel bad that we're having it so hard. It is the hardest thing in the world to lose the one you love...we are doing our best with it...love yourself and be gracious to and kind to yourself...it's what he would want for you.

Please keep coming back to this site and know you are very welcome and cared about here.

[lorikelly]

Dear Deb

I am so sorry for your loss and for how you are feeling. i lost my mom and have alot of guilt. i was her caregiver also and was so tired. i beat myself up about it. i could of been more patient , understanding , talked more, said i love you more and could go on and on,. some days the guilt just eats me up. i am working at it everday. today my therapist said whne i am ready to let go of it i will, i pray that day will be soon. i think someone we love being ill takes alot out of us. we are scared and don't know how to deal with it , we also don't believe that they will die. i knew how sick my mom was but thought she would go on forever. i got mad at her b/c i think she stopped fighting and i couldn't understand why she didn't want to fight for me. thats selfish but i didn't want to let go. give yourself time and try not to beat yourself up. keep coming here the people are great.. just keep talking we all understand. lori

[dlongo]

Thanks everybody for your kind words. I need to sell this house. It is way too big for me and I just can't take care of the pool and the yard and everything. It's a beautiful house but not really one I would have picked. It was definitely Joe's house and now he's not here. I came home yesterday and my realtor had come in and moved a bunch of stuff around and took down a bunch of my pictures and put up some of her own stuff. The house looks much better and not so cluttered but it doesn't feel like home. I totally broke down. It is something I have to do though. I can't live here without him. I keep seeing him coming down the stairs or sitting by the pool. It's killing me. My friends say I need some help. I'm actually afraid of losing my job. I'm cranky and they all say I need to "come back." Sometimes I feel like it's just not worth it anymore. I keep thinking I"m making a mistake about selling the house but I already put $10,000 down on the new place. I know it's the right thing to do.

Deb

[coliver]

Hi Deb,

I am the ultimate everything. I take care of everyone (except myself,) feel guilt about everything, and try to fix things for everyone. Not putting myself first has not helped me at all in the grieving process. I took care of my baby sister 10 years ago when she had a heart problem after delivering a baby girl and still she died. I took care of my husband of 35 years and still he died 4 years ago. I took care of my son and still he died two years ago at age 35. I am a nurse and my job is to save lives. I have helped so many children live but I could not save my own loved ones. The reason is because I am not the ultimate everything. That is only an illusion that gives me excuses to do things for everyone else so I don't feel guilty. Ironically, it's a vicious circle because I still have as much guilt as anyone. It's just a really unhealthy guilt because I avoid doing things just for me. Now I am alone, with no one to take care of and no desire to do anything for me. If you don't do things for yourself, you can't take care of others. I urge you to never feel guilty about stepping away, giving your mind and soul and break. Everyone needs and deserves that. In the end there will always be something to feel guilty about. The truth is that we have very little control at all; except to take those moments for ourselves when we can.

Take care of you. Always!

Cheryl

[Dusky]

Dear Dlongo,

I read your post and can relate to these feelings of guilt – and I possibly have an idea for you that may help you work through some of these issues. First of all I think it is normal to find various issues that make us feel guilty or have regrets when we loses some one close to us – especially if they have suffered through a long illness and required care giving. My partner was ill for 10 months and lost his sight three months into the illness – I managed to keep him home the entire time however it did not come with out a cost and various times when I lost my temper and was less than kind to him. I was so anger at the situation and some moments saw me getting anger with the very person I loved so much. It has taken me a long time to put all that in perspective. Basically what it came down to for me - after some reflection - was that I did the best I could given the circumstances faced at the time. We are all human and our loved ones – if they were here – would be the first ones to forgive us for any shortcomings we may have had. The real trick is in extending that same forgiveness to ourselves. One thing that really has helped me deal with the grief process and those moments when I feel guilt has been to write letters to Jack. I have written 18 of them since he died 14 months ago. I am going to share one of those letters with you now – below. It was written just two months after Jack died and it was during a day when I was beating myself up for the times that I was less than kind to Jack. You may want to try something similar – it was very cathartic – and it has been part of the process that has helped me deal with this issue. I have shared this letter with this grief site before – so some of the readers have seen it before. Here it is – one of my letters to Jack – written on 10-14-05:

My Dear Jack, 10-14-05

Sometimes I think that I spend a lot of time remembering more of the bad things that I may have done during the time that I took care of you. I’ve had one of those days when I’ve been betting myself up – so I have decided to make a list of the Good vs. the Bad and see what the list shows – hopefully this exercise and letter to you will help:

GOOD VS. BAD

Bad:

1. There were times when I would get very upset when I was cleaning you, or when you would not follow my instructions to stand. I know we seemed to start almost every day with a verbal struggle until you became bed ridden. I should have known better – but I did not – I feel bad about this. I know I apologized most every time I did this – Please know how very sorry I am for this shortcoming on my part.

2. One time when you would not swallow your pills – it felt like you were biting me and I tapped you on your check – scolding you not to bit me. I should have know better – although I did not recognize it – your illness was causing you to chew when you thought you were trying to swallow. I am so sorry.

3. I should have spent more time just sitting with you – when you were in the Living Room (and could walk) and then when you were bed ridden. Sometimes you just wanted to sit and talk – some times I did that and other times I did not. The only excuse I have is that I needed to try to keep busy doing other things – I was almost crazy with watching you slip away from me – now I wish I had just sat there and been with you all the time – but I also know that caregivers need to pull away also. Despite knowing that I still feel bad for not spending more time with you.

4. Some times you had so many request during a day that I would get short tempered when “another request” was made. I should have been more understanding – after all you could not see. But I did apologize many times – perhaps not as often as I should have. For those times I did not please know I am sorry.

5. I did tell you I was going to put you in a home when you bit me. I hope you know that was out of frustration – there was no way you were ever going to go to a home other than Our Home – and that is where I kept you until you died.

Good:

1. I made all the meals – except those brought to us by friends. I think I became a half way decent cook – especially breakfast – you even said that my breakfasts were great.

2. I fed you when you were not able to do that any more – and I remember really enjoying being able to help you with this. I cooked the best I could and you seemed to enjoy eating even though you were so ill.

3. When you had to pea – I held the urinal for you – and you did have to go to the bathroom a lot – just the way your system worked – you had to pea a lot even when you were well – lol.

4. I gave you showers daily – when you were able to stand up – and then gave you sponge baths in bed when you were bed ridden. This included cleaning your bottom.

5. I took you to the bathroom every time you needed to have a bowl movement – this was pretty labor intensive when you could still stand – I may not have been as patient as I should have been but we got the job done.

6. I kept your briefs clean and pads clean when you were bed ridden – everyone from hospice told me I was doing a good job at this. I had no experience – but I sure tried hard.

7. You had many requests – such as “Winto greens – or drinks – or popcorn – or a comb – I tried to get you all the things you needed. I know sometimes it was overwhelming (the requests were many) but I really did try my best.

8. I shaved you nearly every day – some days I missed – but for the most part I got this done.

9. I scratched your back – as often as I could when you asked.

10. I massaged your legs – and kept them elevated when you had a swelling problem.

11. I kept the house clean – this kept me in busy work so I could escape mentally from what was happening.

12. I paid all our bills and kept all the financial items in order.

13. I filed for your Private Disability Policy and for Social Security Disability – got all that money coming in – what a load of paper work.

14. I kept all the Hospital paper work straight – and tried to share all that with you so you would feel on top of your medical treatment – this was difficult sometimes because the fact that you were blind and the nature of brain tumors cause you to have delusions and this complicated how we would sometimes be able to interact.

15. I sold my truck and then took out a HEL and bought your car – So much paper work when there were other greater concerns – but somehow I managed.

16. I wrote tons of e-mails trying to keep friends and family aware of what your latest condition/problems were. I made tons of phone calls – and you know how I hate the phone.

17. I was able to keep the yard work done and everything trimmed – Thank God we have mostly desert landscaping and all on a watering systems.

18. I extended the Pool Warranty – and dealt with some problems with the pool – God I hate that thing.

19. I took you on walks out side – and down the street – when we were able – and then in the wheel chair when you could not walk. It was not often that we could do it – but when possible – and I had some help we did it.

20. I kept you home for the entire time – and you died at home. I remember telling you a number of times – maybe more – that I was going to keep you home and I would always take care of you – not to worry.

21. When you could still walk – and especially on your time home in December and January – we would go in the car for appointments and to the Arizona Council for the Blind – even out to eat. This was a very labor-intensive task – walking you to the car – getting in and out – because you were blind – it was hard on both of us. It is really amazing what we were able to do.

22. When possible we went to some social outings also – to Toms house (Xmas and Thanks giving and Easter), to my parents, to restaurants – we tried to make this as normal as possible despite the nightmare we were both living.

23. I got you all your pills – and kept track of them all. The Hospice people seemed to be pretty impressed the way I was able to keep track of your medication.

24. I helped you through three seizures – the last one just before you died – where I had to give you a Valium enema to help stop it.

25. I called 911 two times – once in October – when you went blind – this one I am sure saved your life and again in January when you had one of your seizures. I know sometimes you may have thought it would have been better to die – but I am so glad that I had something to do with saving your live at those times – At least I was able to have you with me for a while longer. A hard as it was I treasure even the last 10 months I had with you.

26. I organize your 56th Birthday party – what a blast we had – you said it was the best BD you ever had.

27. I wrote your Eulogy and planed your “Celebration of Life”– even when you were still alive – I knew you were going to leave me and I had to be prepared – I wanted it to be the best Eulogy and “Celebration of Life” ever – It was so hard for me to do this when you were still alive and with me. I think what stopped me from involving you in some of these plans was because you seemed to forget that you were dying and I saw no point in keep reminding you about this – after all the nature of your illness and blindness seemed to make your circumstances different than the norm. Yes you should have been involved in some of these processes – but with what was happening to you – I think it was the best thing for you - that I did that for you.

28. I made the decision to stop having you take your Chemo drugs. As hard as this was for me I think it was the right decision – and I’m putting this in the “good” column. Giving you more Chemo was just potentially causing your immune system to create even more problems like the warts. I knew you would not want to live longer if the quality of live was not there. So rather than keep you alive – for me – I may have let you go a short time earlier – but I did that for you. Jack this really was an act of love. I hope some day someone does the same for me.

29. I was your Advocate for the entire time you had to be involved with the hospital and medical community – I fought for you “tooth and nail” – I’m sure many of these folks though I was insane – but I wanted the best for you and when my perception was that you were not receiving the finest care I was “in their face”. I ensured that you had the best there was to give.

Now that I have finished writing the Good vs. the Bad – I think I feel better. Yes I did some things that were not nice, kind or considerate – but when I look at what I did that was good - I believe the scales may be tilted to that side.

I have had a rough day today – I was dwelling too much on the 5 Bad things and not the 29 Good things that I was able to identify here.

I’m very sorry for the 5 Bad things – but I am also very proud of the 29 Good things that I accomplish during this last 10 months of your life. I love you as never before.

Your John Boy

I bet if you wrote a letter to your loved one that the “Good” column would far exceed the “Bad” column and that you did many wonderful things during the course of his illness. None of us are perfect – but we are all human – and our loved ones would be the first to extend forgiveness to us. They certainly would not want us to suffer. Now if we can only extend forgiveness to ourselves. Sometimes I still struggle with these issues – but it has gotten much better. Sit down and write your letter today – I would love to hear about the results. Writing is such a powerful tool – and in this case your own words will help you heal.

My best to you always,

John – Dusky is my handle on here

[kayc]

John,

I think that was a great idea. I know when George was dying and in the hospital that last weekend, I didn't realize it, in part because he shielded me from knowing what was going on. I was at my sister's reunion, several hours away and when I finally learned he was in the hospital, he told me NOT to come home, that he would be in tests all day Saturday and wouldn't be able to see me anyway. I spoke with him Sat. morning and he sounded great. Sat. evening, however, he had received the news of just how grave his situation was and I think then that he realized he was going to die...however, I did not know. I thought he was going to have bypass surgery Monday morning and get a new 20 year lease on life. I wanted to be with him, yet I didn't have my car with me, my sister wouldn't bring me back early, and he had urged me to stay put...we would come back Sunday as planned. When I finally got there Sunday afternoon, he sounded hurt...he had gone through all of this news alone and faced his imminent death...alone. I STILL didn't know what was going on at this point. He quietly told me that HE would have hitchhiked, walked, whatever he would have needed to do to be with me if situations were reversed. I knew that was true, I knew he would walk on crushed glass clear around the world if he'd needed to, and I felt really bad. He had never before ever said anything hurtful to me, and it would have been really easy to react to it...and indeed I did think about it. But although I still feel very bad that I hadn't been there, and I wish it would have been different, I do not feel guilty for it, because I realize that when George spoke to me, he was speaking out of his illness, he was grappling with not only pain, but facing death. In real life he never would have intentionally hurt me, he just was not that way, we were on each other's sides, fighting for each other. So I knew it was only the illness talking. I forgave him those words and forgave myself for not being there. A friend had offered to come get me Saturday night at 10:00 p.m., but he would not have gotten there until the wee hours Sunday morning and by the time we reached the hospital, it would have been about 7:00 a.m. and he was old and would have had to drive tired and stressed, so I made the decision to not have him come because I didn't want to be responsible for him having an accident. We do the best we can in a situation and especially when we love someone. We have to understand our limitations, our humanity, and the limited knowledge we have at the time. And if I listed the good points, the list would go on and on and on, for I was the absolute best wife in the world I could be to George, and we both knew it. Our grace needs to extend to ourselves.

[lorikelly]

Thank you for writing that post. i am having a bad day today beating myself up about my guilt and then i read your post and it gives me hope. i needed that today. thank you so much.

i was my moms caregiver for 18 mos she was bedridden and it was hard emotionally,mentally and physically. i never wanted to believe she would die and was mad at her for not fighting harder. i did my best and gave 100 % but still feel like i should of done some things differently. i also wrote all the neg vs pos things done. my positvie was much more but i seem to just dwell on the neg.

thank you for letting me see that others feel this way also and its normal. i get so scared somedays because i think i will never forgive myself. i love my mom so much and the pain is so awful, it has been 3 mos this week.

thank you again for helping me. lori

[KarenH]

Dusky,

My God, if I had to write lists, mine would be practically word for word. Maybe because Paul and Jack both had brain tumors and like symptoms. it was incredibly spooky reading your post. Especially about being in the medical community's face. I'm starting all over again with my 94-year old grandmother. I admitted her into hospice last week...she is in the final stages of congestive heart failure. She is at home with a caregiver, there are 80 years between her and my son and I am responsible for both. Here it is October again and I have another terminal diagnosis on my hands. It's bringing the whole thing with Paul back so vividly. The hospice people want to give me the talk and I just cry and nod and tell them to save their breath, I just did it all 9 months ago. I feel even more guilt because I am not really feeling like I'm grieving for her, she's 94. I'm grieving for me having to do this again so soon. Selfish, I know, but painful as well.

I was glad to see you back on the site...how was Canada? Funny what you said about the birthday party, I threw Paul an Anniversary party 4 days before we got the terminal news and he said it was "unbelievable." Our anniversary is coming up on the 21st.

Guess I've rambled long enough, thanks for listening.

KarenH