I've Lost My Dad

[rekim01]

This is my first post and I don't even know where to begin, but feel I need to just talk about all that has happened in the last little while.

My father passed away on December 11th - exactly two weeks before Christmas - he was 84 years old. He had been struggling since mid July when he had an apparent mini-stroke which left him unable to walk. His legs still worked but would not support his weight. He also suffered from slight dementia (mostly memory loss about past events etc. but never did not know his family). At first it took several weeks for him to remember he was in the hospital, and that he couldn't walk - and he needed to be restrained because he would forget and keep trying to get out of bed. At the time of his admittance to hospital, other than the stroke, my Dad was a healthy man. During the time he was in hospital his health failed miserably. He had any number of infections which he was treated with antibiotics for - then he got C Difficile. That was the final blow. He lost about 30 lbs, he was having bloody stools, had 3 blood transfusions to bring his blood count up and finally he just could not fight any more. They told us he had congestive heart failure then he died on Dec. 11.

Now I am left to recount all that has happened, and can't help but feel that maybe I failed my Dad somehow. He wasn't sick when this started. I live 2 hours away and drove down every weekend to see him. I called the hospital daily to see how he was doing. I can't even go into how I feel the hospital failed him because there is just too much pain in reliving it. Now I feel like I should have done more, I should have pushed harder for better care, better diagnoses, better treatment. Maybe I should have moved him to a better hospital, but this one was close to my Mom so she could visit every day. (She had a mini stroke one week after my dad went in hospital and it decimated her short term memory, so disrupting her routine more than absolutely necessary was not an option). I just feel like I failed him and it breaks my heart. He was such a proud man, and I know that he would not have wanted to continue suffering through all of the indignities he had, but maybe if I had tried harder, he wouldn't have had to suffer. It was just so difficult trying to keep a handle on things from so far away.

I guess now I am not only feeling grief at never seeing him again, or hearing his voice again, but I am feeling guilt at not doing all I could for him. How does one find peace in all of this? Outwardly I am handling everything beautifully, but inside I am being eaten up by guilt. I think about him all the time and wish I could have done more. I need to find some peace!

Kim

[ThinkSpring]

Kim, I can't offer much advice, since I am brand new here also and have very recently lost my mom. But so much of what you went through with your dad is similar to my mom's situation, I felt compelled to post, if only to commiserate. Interestingly, my name is Kim also!

My mom's cancer progressed rapidly this fall. She quickly became too weak to walk. Because of the spread to her brain, her memory and thinking were badly affected. This was very hard for me because she had always been extremely sharp. As she was going through brain radiation, she would ask INCESSANTLY for weeks..."how many more treatments do I have? When do I have to be there?" Because of this she would also forget that she couldn't walk anymore. She would try, only to fall. It was heartbreaking...my dad was trying to do it all and refused all outside help, and I think there's a lot he hasn't told us. She had bruises that worried us.

I too am feeling great guilt...for not "doing more" even though I am not sure what that would be. It is very easy...natural?...to rehash in your mind everything that happened along the way and critique yourself for what you NOW think you should have done THEN. I did my best advocating for my mom at every step, even with my clueless dad getting in the way many times. I work in the medical field, and even though I know how things generally work, so much of it is a nightmare of paperwork and red tape. It seems impossible for anyone to navigate it without problems...which lead to regrets...even though you tried your best, it never seems good enough. Everything in hindsight is 20/20. Please don't be so hard on yourself...I am trying as well.

Like I said, I don't claim to offer any great insight like some here who have more experience with the grieving process. But I can so relate to what you are going through, if that helps any. It's funny how pouring your guts out to people you've never met, and will probably never meet, can help so much...because you know they know your pain.

Hang in there...I am struggling to do so just as you are right now...

ThinkSpring (also Kim)

[mlg]

OK, my two Kim's (my oldest daughter's name too and I'm sure she has gone through a lot of what you are going through).

You are just going through normal part of the grieving process. If you look back at old posts you will find most of us have talked about the Coulda, Woulda, Shoulda syndrome. The fact remains that there was little or nothing we really could have changed in most circumstances.

Rekim

I am sure the distance was hard for you. My daughter only lived 15 to 35 miles from where Tom was depending on if he was home or in the hosp. She received a lot of grief from part of Tom's family for not being there for him when her younger sister stayed all day. The younger one is a teacher, had lots of sick time she could even use for Dad and they could get a sub for her. My poor Kim had no vacation time left since most of this was at the end of the year. She called constantly, like you; but the fact remains her dad died and there was nothing she could do to stop it and he had just turned 62.

You left him where your mom could be with him and as a widow I can tell you that was one of the kindest things you could have done. Not to diminish your grief, but you have no idea how big the hole in your mom's heart is. Just hold on to each other and ride this out. She too may be putting on a good face and dying on the inside.

If it weren't so early I'd tell you both to take a nice warm bubble bath, which may give you the boohoo's but that's OK, it will help you relax and get some of it out.

Just take deep breaths and put one foot in front of the other and keep going and you will make it through this journey, but it will take quite a while.

[rekim01]

Thank you for the responses! It truly does help to know we are not alone and that we all go through the stages of grief. I find it so hard, with this being my first "major" loss. 2 grandparents passed before I was born and the other two before I was ten so a little different than my DAD! Oh how I can hardly believe he is gone! I feel so badly that I did not truly appreciate the time we had together - how I wish I had savoured each moment more! I know there is no looking back...we just don't get a "do over" and I think it makes me appreciate all that I still have even more!

Kim (ThinkSpring), thank you for commiserating with me...I am sorry for your loss. I know the feeling of trying your best and still not feeling like it was enough...it is a horrible way to feel - especially knowing we can never make it right now...it's just too late...*sigh*

I continue to seek peace in my soul, but it is not there yet. Maybe someday?

Kim

[jackietnd1]

I am really sorry to hear about the loss of your father I will keep you ing prayer.

I loss my mother just 11/15/2008 this is the first time I am sharing it over here

Keeping the Faith

Jackie

[Temmie]

Dear Kim,

My condolences for your loss. I can certainly relate to your father entering the hospital a well man, and having all manner of problems descend following his arrival. This was my Dad's experience also. I'm quite sure, among the elderly, the risk for infection is always great (and often, doctors don't know exactly what they're doing). They can be great. Fabulous. Life savers! But sometimes, as I explained to my dad at the end, "They just don't know." They do the best they can, but like all of us, sometimes they make mistakes.

On to issues of guilt, and "stages of grieving," in general. When my mom died in March, I found help with the book, I Wasn't Ready to Say Goodbye by Brook Noel. It details some of the stages of grieving, and for me -- was such a help.

With my Dad's recent passing, I've been reading books about Heaven, Near Death Experiences (NDEs) and Angels. I have had some out-of-body experiences (not ND, but similar), and I've had some spiritual experiences; so -- for me -- call it what you will, but I know the "unseen realms" exist; and to my thinking, that includes Heaven. There are quite a number of titles in this genre, but two that come to mind are Embraced by the Light by Betty J. Eadie and Saved by the Light by Dannion Brinkley.

I used to own them both, and bought multiple copies of the first to share with friends. I've picked up another book by Eadie at the public library, and have found it a great comfort. She also has a web page, incidentally, if you want to read some of her story. There is also a message board where individuals have posted some of their experiences. Call it fantasy reading, if you will, but if it helps? Give it a shot.

My personal beliefs are that earth isn't our real "home," and I don't mean to push dogma here -- but it helps me to consider -- Mom is finally home. Dad is finally home. We did the best we could. (And death, as is birth -- is so out of our hands). We all did the best that we could.

Finally, grieving is not linear, but happens in its own sweet time. Without ruminating on the more negative aspects ... which tend to keep us in a negative focus/state of mind, I'd encourage you to keep feeling, keep opening up to what you're experiencing, keep writing -- and if you're a praying woman, pray. Prayer is nothing more than the articulated intention of wishes. Ask to be lifted up. If you feel you need forgiveness, ask that you experience the same. Ask for strength. Wisdom. Comfort. Guidance. That warm bubble bath sounded like a terrific idea! (Think I'll do the same.) Be gentle with yourself ... and keep yourself in close company with those who respect, care for, and understand you.

We have such a lovely community here.

Wishing you peace ...

Heavenly peace,

Temmie

[mlg]

I don't know if this will make any of you feel better or not, but it's not necessarily that the Dr's made mistakes with your loved ones. Medicine is not a exact science and what works on one person does not necessarily work on another. In fact what makes one person well may make the next person worse even though they have the same symptoms. Doctors do not have crystal balls to let them know every thing. I know there are some who act like they are all knowing but believe me they are not. So it may be that they were doing everything by the book so to say, but your loved ones body didn't know how to respond that way. So you try plan B and C and hope something works. But we have to remember that God has a plan also and for some reason unknown to us it is time for our love one to go HOME and there is nothing any one can do about it. As much as it hurts us and as much as we hate it ,we just have to pull ourselves up by the boot straps and take baby steps until we can march forward for our loved ones because we know that is what they would want us to do. It may take us years and we may fall along the way but each of can do.

[emptyinside]

I'm so sorry about your loss. I offer no good advice. I can only say that I know exactly how you feel. I also think I failed my father. It's a rough existence, and I visit these boards to be among those who would understand. I hope you continue to do so, too. My thoughts are with you.

[rekim01]

Thank you all for you kind, thoughtful and insightful words of wisdom. I know grief takes time, and for the most part I think I am handling it okay. It is just the ever present feeling that I didn't do all that I could, or all that I should have to help my Dad. He was such a strong man and to see him so quickly reduced to a shell of his former self was so hard. I believe when he knew he was not coming home, he resigned himself to the fact that his life was almost over. He would not have wanted to live in a bed for the rest of his life. He would never have wanted to be a "burden" to anyone. I just wish ...oh I don't even know what I wish...other than I wish he were still here.

I understand that the medical profession does the best they can, and certainly cannot know all BUT even some of the nurses etc. that I encountered while my Dad was in hospital were unbelievable! Nurses who spoke to me like I was an idiot when I asked questions, nurses who would get angry with my Dad because he didn't understand what they were asking of him, nurses who couldn't take 5 minutes with my Dad each day to put his glasses on and his hearing aid and dentures in! C'mon the man is bedridden...how the heck else was he supposed to get these things! Maybe he wouldn't be so depressed if he could see and hear! My father contracted C Difficile which is a HIGHLY contagious super bug. He was in isolation and we had to wear gowns and gloves when visiting. When I went to get his clothes from the hospital the nurses first told me he didn't have any (he did because I bought them and brought them there!) then when we figured out they were still in the room he used to occupy (now occupied by someone else)...I found them in the bottom of a closet covered in feces! Not bagged or anything - this is how C Difficile is transmitted! I also visited one day to find feces on the curtain that surrounded his bed. The nurse told me not to worry because my dad was the only one in that room. I guess we won't worry about my 84 year old mother who went to visit him everyday! I should have made a fuss...but I was so afraid my Dad would be treated even more poorly, that I didn't. His last few months he had little dignity, and I felt that the hospital staff did very little to maintain what he did have. Not all of them...some of the nurses were GREAT! But some of them were horrible. Just as a side note, the hospital told my brother when my Dad died that his personal effects would be sent to the funeral home. At the viewing, my Dad did not have his glasses on and his face looked very VERY gaunt. When I asked the funeral director if we could take my Dad's personal things from the hospital he told us he didn't get any. The hospital had not sent his glasses or his dentures or anything with him. No wonder he looked so unlike himself! I had to have my husband go pick up his things several weeks later as I could just not bring myself to go there again.

Sorry...and thanks for letting me vent just a little. My anger and frustration at the whole situation clearly has not diminished. This, coupled with my guilt, is making it very hard for me to get past and accept. One day at a time!

[mlg]

I'm sorry you had such a terrible experience. There is no excuse for nursing care like that. I wish you had taken pictures or called the administrator right on the spot. There is no excuse for this. I hope if this happens to anyone else you know you will tell them to start with the nursing supervisor and then keep going up the ladder to the administrator. Especially if there are things like his clothes and the curtain surrounding his bed if nothing else have someone pull out their cell phone and take a picture. That is how the medical field gets such a bad name and there is NO excuse for it.

I'm surprised the funeral director didn't call you about his glasses and dentures. Usually they ask that and if they hadn't been there you would have had enough time to get them. It is bad enough to go through the visitation, let alone looking at someone who doesn't even look like himself.

I am so sorry again that you had to go through all of this. Please accept my apology for the uncaring people you encountered.

[rekim01]

Thank you Linda for your kind words. The whole ordeal, in my opinion has been a nightmare! If I had realized that my Dad should have had his glasses on and dentures in I would have maybe been able to do something, but we didn't see my Dad's body until the viewing and by then I think it would have been to late anyhow. It just angers me that a man who has contributed to society for his entire life, served in WW2 for his country and has never been a burden to anyone, ends up being treated in such a manner. Every day my mother would clean his glasses and make sure that he had them on. We would put his hearing aid in and comb his hair. Many times my brother shaved my dad because it hadn't been done in a number of days (one time we came after being away for a few days and it looked like he was growing a moustache!) I distinctly remember a nurse rolling her eyes at me because I asked her to help my Dad use the bottle to pee in. I know that these people see many patients and some are not the easiest to get along with, but they still deserve respect! They are not "the patient in bed 23" they are someone's father or husband or grandfather or friend. They deserve BETTER! I know they are busy and overworked and a lot of times undervalued, but it is still no excuse for them to treat someone like "just another patient".

Oh I could go on and on, and now it is too late. I don't think any of my complaining would have saved my Dad's life - he just didn't have the strength to fight anymore - but I do hope that my Dad forgives me for not standing up for him more, for not pushing harder. I vow now that my mother will NEVER go to that hospital. If she needs care I will do everything in my power to have her elsewhere...I don't want to watch the same things happen with her.

Oh Dad, I miss you so, please forgive me....

[DebFromLodi]

I do understand how you feel. After my mom had knee surgery, she went to a rehab and they just let her lay in bed all day. Had her drugged. They brought her food in and left it, they never fed her. They picked it up half an hr later, uneated. They never gave her water. They called us to stay with her all night becuase she would try to get out of bed and they did not have time to watch her. We finally realized, after she lost forty lbs that they were not feeding her and she was dehydrated. The four of us kids split up our times so we could be with her for meals and feed her and give her plenty of water. Then we split up four hrs each to sleep with her all night. It was terrible. Then when she finally had to go to a convalescent hospital, still drugged to the max, the hospital lost her teeth. They never replaced them. They made a dental appt for her and i went with her, but she never did get the teeth since it had to be approved first. Looking back there was so much i should have done. I did nothing because i was afraid they would mistreat her and i couldn't stand that thought.

I can't believe on Feb 2 it will be a year since we lost her. Time has gone by so quickly and yet it seems like only yesterday we sat at her bed as she left us.

I am really having a hard time with this. I pray for us all.

[emptyinside]

DebFromLodi, I'm so sorry that had to happen to your mom. My heart just aches for her, imagining that experience. As you know, I'm going through the same thing. I can't turn it off in my mind, though. How can anyone let someone suffer like that?

[AnnieO]

rekim01

I am sorry your family had to go thru all of that.

I understand it completely. The nursing home where my dad was, lost his glasses and could have cared less. I did his laundry, but they would take things to the laundry and then not return it. I constantly went looking for his clothes. This place did the same thing with his meals, just put them on the bed-table and left. I would try and get there for 2 meals during the day. My mom had a terrible experience too. When we first had her in a nursing home , she was too weak to walk but suffering from drug induced confusion. She kept trying to get out of bed, the first night they put her in a wheelchair in the nurses station, all night. That's where I found her the next morning. We hired an agency to provide someone to stay with her at night. The first morning I came in after hiring the agency, my mom had a black eye and scratches and bruised arms with fingerprints . We called the police. I will live with that the rest of my life. My mom could not protect herself and the fear she must have felt that night. I didn't know what to do and I thought I was doing the best thing for her. I did complain, but not enough...because I too, thought it would make things worse.

I do think you should all the administration and voice your complaints, they need to know these things. Or write a letter.

[AnnC]

We had a really nice nursing home for my dad, it was a memory care unit so most of the patients had Alzheimers. My dad didn't, but the cancer had spread to his brain so he had some dementia so they accepted him. They took good care of him for the most part, but when hospice sent them his pain medication, they refused it because they wanted the medication in blister packages instead of a bottle (to help them keep track of how many he took, but in my dad's case it was hospice who would give the pills, so the rules should not have applied). So when my dad started having bad pain and the hospice nurse (who came in from a hospice association outside) wanted to give him his pain meds there wasn't any because they had rejected it for the packaging! It was awful, my dad was writhing on the bed in pain and no meds for him! My sister ended up calling around to find a hospital who would have it in the blister packs the nursing home demanded, and my brother had to drive over there and pick it up -- the staff did nothing. And then it took extra time because he was so far gone in the pain for the hospice nurse to give him enough to get the pain under control. It was horrible, and especially because my mother had to sit and watch all of this, and she was so upset when she had said all she wanted was for him to not have to feel pain, that was the point of the hospice care!

It's so hard -- I know the caregivers are only human, but it's so infuriating and upsetting when our loved ones' pain is made worse by incompetence and stupid rules.

Ann