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sassy1
Posts: 54
Joined: Oct 2009

You know, I asked before if it gets any easier and I think I have found that no it will never get easier. You just learn to accept what has happened and you try to move forward. I went and cleaned out my husband's closet today and went through and packed up his clothes. It was very hard to do but I felt that I could not procrastinate any longer. I went to the cemetery yesterday to visit with him and I cried. It was actually the first time that I had seen the engraving on the crypt and it was pure reality. It was not a dream, he is not away on a trip and he is never returning. I talked to him and I felt close to him there and I'm sure that I will be visiting him often weather permitting. I sit here in the evenings second guessing myself if I did the right thing giving him the medications they advised and wondering if it shortened his life instead. Then I find myself blaming hospice and the doctors because I feel that if he were this sick, why was I left to administer the medications and why didn't he have 24 hour nursing. I am not a qualified nurse and was told to administer narcotics! My husband died on 11/24/09 and I just received a condolence card from the hospice agency two days ago!!! Now that shows me just how much they really cared. Yeah, they care because they're not getting any money any more. If I sound angry, I am very angry. I feel that my husband was let down by the whole medical field in the end. Not one time did the doctor call the house to see how he was doing. I did receive a condolence card from his Oncologist but from his primary care physician, not one word!!!!! I know I'm changing doctors. So I have found that it does not get any easier, there is just acceptance of what has occurred and you try to pick up and go on.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

To the contrary, it does get easier, and that starts most of the time with acknowledging your loss, which you have done.

It helps, too, a lot, to get over your anger and frustration, as hard as that might be to do.

I am a survivor, sassy, so I know that side of the coin, but I am also the son of a wonderful woman who fought off cancer for more than 20 years before succumbing.

I can tell you that it is not unusual at all for hospice to teach a caregiver how and when to administer narcotics: as noted elsewhere in these boards today, cancer does not work a 9-5 shift, and therefore neither does pain management, perhaps the most critical aspect of treatment, not just for those in end-days, but to keep the hope and will alive in those of us with opportunities for survival.

As for 24-hour nursing, there is only one realistic place for this to occur, and that is inside of a hospital. There, sassy, the result would have been the same, I suspect, but you and he would not have been afforded the opportunity to be together as much as you probably were with him at home.

With respect to condolences, please recognize that these people are busy trying to save other lives, trying to make others as comfortable as possible in their last days, trying to do what they did for your husband for as long as they had the means to do so.

I have been through two rounds of cancer, including surgery in both cases and a stay in the hospital for nearly a month following the second bout, and the only cards I get from those rascals are appointment cards. I am good with that.

It will get better.

It will.

Take care,

Joe

sassy1
Posts: 54
Joined: Oct 2009

I understand that these people are caring for others in the same position that my husband and I were in, but he was in and out of the hospital from May through August of last year and he was put through a lot. He did a month of chemo in July and that just caused him to become sick and ended up back in the hospital and did not come home until August 21st. I knew on August 2nd that he would not be receiving anymore chemo because the oncologist came in to see him and advised me at that time that he was no longer a candidate for the treatment. I also feel that the medical field failed my husband because he was not diagnosed correctly for the recurring cancer back in April when the radiologist clearly stated that he needed immediate monitoring. The RN nurse at the oncologist's office advised me, after I asked about the results and what it said, that there was no problem. Then less than two weeks later he is in the hospital and diagnosed with State IV cancer. And he is so sick that he can't get any treatment for it. I was even advised by the oncologist that the neumonia could most likely have been caused by the cancer. I will survive and I will carry on in my husband's name and I will not let people forget him. He was a wonderful and caring man and we had 25 beautiful years together. I cherish every one of them and will for the rest of my life.
I'm sorry to hear of your situation and hope with all my heart that you beat this thing called cancer and that you live a long and wonderful life. I don't know if you are married but I hope that you are happy and strong in whatever you do. I know I sound very unhappy and I am because I am without the other half of me, but I will survive the best way I can. I want to thank you for being there to listen and let me know that there are people out there who really do care.
I may sound upset with the hospice agency, but I guess what I don't understand is that the nurse was here once a week and I think I saw the social service rep maybe twice. I did hear from the Chaplain and he was a very nice person. In fact, he did my husband's funeral service and I can call him if I need to. But it just seems that for the amount of monies that were paid to the agency, they weren't here that often. And as far as the regular doctor, she should be ashamed of herself because she could have picked up her phone and called at least once to speak with me. She always said that she was a patient oriented doctor and liked to treat the old fashioned way with a lot of customer contact. She definitely did not do that in my husband's case.
Please keep in touch and let me know how you are making out. Please stay well.

Shirley

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I wish I had answers, but I don't. I don't feel that a few weeks or months is long enough to find answers. I have not had particularly good follow up through hospice. It is my understanding that different hospice groups do things differently. I know ours had just been passed to a new group, and I'm not sure they really had their act totally together. I do feel that for me anger and regrets are not something I want to dwell on. I watched my father become an angry man in his later years and felt he missed out on many of the good things that were happening around him. On the other had, anger is a part of the grieving process and you have a right to those feelings. I think you are right that we do move to acceptance. At least I hope I am moving in that direction. I don't think I will ever get over Doug's death and the years of caregiving leading up to it. He is a big part of my life, and I will always miss him. I still miss my grandfather who died over 50 years ago. I only knew him for 9 years. I knew Doug for 45 years. I guess, in a way, I have reached a type of acceptance. I have accepted that it's ok to grieve. I have accepted that this process will take time, and I have accepted that losing a loved one is just plain hard. Please take care of yourself. Hugs and prayers, Fay

sassy1
Posts: 54
Joined: Oct 2009

Fay,
Although it may sound it, I really am not angry at the world. I am just angry at the part of society that I don't think did their job. Glenn was originally diagnosed in June of 2002 and went through a year of chemo and a month of radiation, which that by itself, almost killed him. So for 5 and 1/2 years we tried to live a normal life while going for the scans all the time and continuous doctor visits for monitoring and then the end of 2008 when something shows up, they don't do anything about it. Then again in April of 2009 when the radiologist puts up a red flag, the doctors again do nothing. I just feel that this is what the health care is coming to. Doctors and hospitals are not being paid enough by medicare and insurance companies so I almost feel that their attitude is, "Why Bother". I had to take my husband to the emergency room four times last year because he became so ill and each time, he was put out of the hospital after so many days because I was told that Medicare said that the stay was long enough for the condition he was diagnosed with. This only caused him to get sicker and weaker and he was unable to withstand the chemo treatment for the cancer. In the end, that was what contributed to his early end of life. As far as the hospice agency that I dealt with, I was very disappointed because my brother had worked for an agency a few years ago. The night my husband died, I called my Mom's house because she lives about six houses up the street from me and my brother lives with her. He came down immediately and I had already called the hospice agency and advised them of my husband's passing. My brother was here and saw that when the nurse came in from hospice he went in the bedroom and pronounced my husband and then came out and called the police. He went through the normal routine of discarding the narcotics that were here and did his paperwork. I contacted the funeral home and they said they would be here within the hour. Well, the police came and he was here for maybe five minutes if that, and then he left. Of course he offered his condolences but that was it. The nurse, in turn, handed me the paperwork to give to the funeral home when they came and he also left. Now my brother advised that when he worked for hospice, they stayed with the family until the funeral home came. If my brother had not been here, I would have sat by myself with my husband for almost two hours alone. Where does that show that they care? Now the nurse that cared for my husband did call me to see how I was doing and she wanted to know if I would work as a home health aide sitting with someone else's ailing family member. Now that was on December 9th and, I don't know about you, but I think I was still in a fog trying to accept what had just occurred and the last thing I wanted to do was get in a situation where I'm watching someone else go through what I just went through and see someone else die. When people meet me they think that I'm a very strong person, but I don't show my feelings the way others do. Unfortunately, it affects me in other ways. I am still fighting a touch of the flu and cannot seem to get rid of it but I just get up and go. I'm trying to find a job but there just aren't many available that I am qualified for. I receive unemployment but that is not much. I don't know how people are surviving in this country anymore. My husband, unfortunately, did not have much life insurance and what he did have paid for the funeral. I guess with my financial situation it is just compounding my feelings and it comes out as anger for the medical field and also for my ex employer. Something, I'm sure, will come my way. It happened five years ago and I survived and found a job and I guess with the death of my husband it is just making it worse. But, of course, if my husband had not become ill I would not be in this situation because I would not have been on family medical leave to care for my husband and they would not have laid me off as a result. I, too, know that I will never get over Glenn's death. I knew Glenn for 36 years and he was an amazing man. People did not give him credit for the intelligence that he had. They always thought that he was a very stupid person because he liked to joke around with people but they did not see him when he handled the finances for the fire company when he was a commissioner or when he represented the fire company at functions. He was strong when he needed to be and knew when to be caring and sympathetic. I have accepted the loss of my husband but I am grieving but I do feel that some people think that I should just pick up and start all over now. I don't know what that means. I saw my in-laws on Christmas Day but have not seen or heard from them since. I guess they can pretend that it didn't happen by not coming around me. They didn't see us much prior to my husband's death so it won't make any difference to them now. Wow, I didn't realize I wrote so much but I guess I feel comfortable speaking with you. I know that I'm not being judged and can voice my feelings honestly. Thank you for being there. Believe me, I am trying to take care of myself, it's just that it is hard. If I didn't have Angel here, the puppy, I don't think I would have made it through the last 53 days. You also, take care of yourself.
((Hugs))
Shirley

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I can certainly understand your feelings. I'm sorry you are having so many other problems during your grieving. Hospice did not come when my husband passed away either, but my sons did. Also, our mortuary came fairly quickly as did our pastor. So I had a lot of support. I know how blessed I was to have that. I think hospice does a lot of good, but some hospice agencies are better than others. We live in a very rural area so they are spread pretty thin here.

I am glad to see you posting. Write and vent as much as you want. We have so many neat people on here who really understand and share with us. Take care, Fay

sassy1
Posts: 54
Joined: Oct 2009

I know I was angry before but now I think that I have accepted the loss of my husband. I don't like saying loss. I didn't lose him, I know where he is. I go to the cemetery at least twice a week now to visit him. I know it might sound odd but I stand there and talk to him and it is comforting. I know that he won't respond to me but at least I feel close to him. I've cleaned out his closet and packed up most of his clothes and donated them. I have started cleaning and making changes to my home. In fact, I found some old camcorder tapes and I watched a couple of them yesterday. One was our Christmas of 98 and it was wonderful to hear my husband's voice again. I cried a little at first but then I sat there and smiled and watched and just remembered the good times that we had together. What was also nice was the fact that my father was on this and he died in 2002. I'm going to have them transferred to a DVD so they will last forever. I am just so mixed up from day to day. I guess it's normal though, if there is a normal. I'm just glad that I have my dog because she is a real blessing. I am going to start walking the boardwalk again and then hopefully, get back into running. That helped a few years back when I was having problems dealing with our situation with the cancer. Now I think it may help dealing with Glenn's death. At least it is a situation that I can control. I just want the weather to warm up a little though because it is awfully cold down at the ocean right now. I am just dealing with things a day at a time right now.

sassy1
Posts: 54
Joined: Oct 2009

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