Bereavement Support Group
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My father passed away in August. The last few months of his life area blur to me. He had been in and out of hospital for the last couple of years. He was fiecely independant and would not go to any kind of supported accommodation. I tried to encourage him to do that. He would agree with me and say it was a great idea and then make unending excuses why he could not do it right now.
He became sick again on the 16th of February. He was generally unwell and was admitted to hospital with boarderline pneumonia. While there he had a stroke and suffered seizures because of the stroke. He was in intensive care for quite some time. When he had the seizures sometimes I thought he was dying then. We started to get used to the idea that he wasn't likely to go home. My sister came out from England to say goodbye. Then he recovered! It was almost a complete recovery. He got back his ability to speak, walk and make jokes. He was almost back to his old self again. Can you believe it? He did this to a varying extent several times. Each time we thought we were saying goodbye and each time he recovered to not quite as good as he was before.
Eventually he was discharged to a rehabilitation hospital. I thought it would be great. It was shocking. Firstly he had suffered kidney failure while in hospital and required dialysis 3 times a week. I was informed that I had to do this. It took about 2 1/4 hours each way. I work part time and the times I would have to drive him, were the exact times I had to take my children to and from school. Now of course if it was neccessary I would have to make arrangements for my other committment but I was amazed that there wasn't another way. I did it at first and then approached the head of the dialysis unit and asked if there was any other way. The dialysis unit used a taxi service which they assured me was very good. Dad said it wasn't. As well as being quite vulnerable and the driver often charging too much the actual cost (even with a disabled subsidy) was quite steep.
I made enquiries of community transport groups. They all told me that they would take people to general medical appointments or even to the hairdresser but their funding specifically excluded dialysis. Everywhere I asked the answer was "Oh, that is up to the family". Because he was in a private hospital he could not get an ambulance. I tried to change him to a public hospital but the waiting lists were too long and they would not take someone from a private hospital.
The the hospital tied him to a chair. He never walked again after that. They eventually stopped doing it but only after a lot of complaints.
Then the next step was to get him assessed to see what support he needed when he left hospital. I was keen to get this done so that I could work out the next step. What they didn't tell me was that once the assessment was done he had 30 days to leave the hospital or he would be personally liable for the cost of his hospital stay ie no insurance. They issued this to me in a letter, not even a verbal advice. Dad assessed as needing nursing home. He hated they idea. I tried to convince him (and myself) it was temporary.
What I also did not know was that there were no nursing home beds available. I applied to scores of nursing homes. Some virtually laughed in my face when I asked. My standards got lower but there were still no beds available.
I finally found a temporary bed in a quite nice nursing home. What I failed to take into account was that at the end of the temporary stay, my father would have to leave and he would have no right to re-enter the hospital, with or without insurance payments. He didn't like the nursing home anyway which scared me because it was far and away one of the bast I had visited. If he was ever offered a bed it probably would not be in a facility as nice as that one. All the time he was travelling to and from dialysis by expensive and incompetant driver.
Then we faced the possibility of Dad having nowhere to go. He needed heavy nursing care which I could not do at home. There were no beds. I called everyone I could think of with my dilemas. I even tried the media but nothing worked. I was very stressed and working on these problems virtually full time. Eventually, by luck, someone mentioned to me that a bed was about to becaome available in a home. Dad moved in there. It was okay. Good staff not very attractive but okay. I thought I could relax a little and give alittle time to my children and my husband. Dad died a week later.
I feel that he was abused, not by anyone in particular, but by the system. I feel I should do something to stop these things happening to someone else but I couldn't get any help at the time, what difference will I now. I feel really ripped off myself too that the last few months of my fathers life were so stressful and so filled with uneccessary worries. I feel I need to do something but I don't know what.
He became sick again on the 16th of February. He was generally unwell and was admitted to hospital with boarderline pneumonia. While there he had a stroke and suffered seizures because of the stroke. He was in intensive care for quite some time. When he had the seizures sometimes I thought he was dying then. We started to get used to the idea that he wasn't likely to go home. My sister came out from England to say goodbye. Then he recovered! It was almost a complete recovery. He got back his ability to speak, walk and make jokes. He was almost back to his old self again. Can you believe it? He did this to a varying extent several times. Each time we thought we were saying goodbye and each time he recovered to not quite as good as he was before.
Eventually he was discharged to a rehabilitation hospital. I thought it would be great. It was shocking. Firstly he had suffered kidney failure while in hospital and required dialysis 3 times a week. I was informed that I had to do this. It took about 2 1/4 hours each way. I work part time and the times I would have to drive him, were the exact times I had to take my children to and from school. Now of course if it was neccessary I would have to make arrangements for my other committment but I was amazed that there wasn't another way. I did it at first and then approached the head of the dialysis unit and asked if there was any other way. The dialysis unit used a taxi service which they assured me was very good. Dad said it wasn't. As well as being quite vulnerable and the driver often charging too much the actual cost (even with a disabled subsidy) was quite steep.
I made enquiries of community transport groups. They all told me that they would take people to general medical appointments or even to the hairdresser but their funding specifically excluded dialysis. Everywhere I asked the answer was "Oh, that is up to the family". Because he was in a private hospital he could not get an ambulance. I tried to change him to a public hospital but the waiting lists were too long and they would not take someone from a private hospital.
The the hospital tied him to a chair. He never walked again after that. They eventually stopped doing it but only after a lot of complaints.
Then the next step was to get him assessed to see what support he needed when he left hospital. I was keen to get this done so that I could work out the next step. What they didn't tell me was that once the assessment was done he had 30 days to leave the hospital or he would be personally liable for the cost of his hospital stay ie no insurance. They issued this to me in a letter, not even a verbal advice. Dad assessed as needing nursing home. He hated they idea. I tried to convince him (and myself) it was temporary.
What I also did not know was that there were no nursing home beds available. I applied to scores of nursing homes. Some virtually laughed in my face when I asked. My standards got lower but there were still no beds available.
I finally found a temporary bed in a quite nice nursing home. What I failed to take into account was that at the end of the temporary stay, my father would have to leave and he would have no right to re-enter the hospital, with or without insurance payments. He didn't like the nursing home anyway which scared me because it was far and away one of the bast I had visited. If he was ever offered a bed it probably would not be in a facility as nice as that one. All the time he was travelling to and from dialysis by expensive and incompetant driver.
Then we faced the possibility of Dad having nowhere to go. He needed heavy nursing care which I could not do at home. There were no beds. I called everyone I could think of with my dilemas. I even tried the media but nothing worked. I was very stressed and working on these problems virtually full time. Eventually, by luck, someone mentioned to me that a bed was about to becaome available in a home. Dad moved in there. It was okay. Good staff not very attractive but okay. I thought I could relax a little and give alittle time to my children and my husband. Dad died a week later.
I feel that he was abused, not by anyone in particular, but by the system. I feel I should do something to stop these things happening to someone else but I couldn't get any help at the time, what difference will I now. I feel really ripped off myself too that the last few months of my fathers life were so stressful and so filled with uneccessary worries. I feel I need to do something but I don't know what.
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
Everything is very complicated, and here in the states we do not possess any kind of socialized health care that affords the same care to all citizens. I've delt with insurance companies and medicare. They aren't going to give you anything if they don't have to.
Finding good care is hard. And for me; I would like for someone to address this issue. Thats why I vote. But I don't really see how hitting up the media would help. Get a lawyer. Then if you can find legal recourse, go for it.
I am sorry you had such a hard time with your grandparents, gecko. I know what you mean about spending days on the phone and thinking that you should have found a way of making it happen. Your grandparents were very lucky to have you.
Thankyou nc,
I tried to get the media involved when we were going through this but they were only partially interested and nothing came of it in the end. I wouldn't know how to go about it now. As for the lawyer, I am a law student myself and I cannot see a clear win on this one. The main thing that stands out to me is the discrimination against Dad because of his dialysis. This was a real problem and I guess I should put in a complaint about that. He could only attend one rehab hospital because of his dialysis, no transport because of the dialysis yet as I said he could get community transport to go to the hairdresser!
I probably was a bit unclear in what I said because I was trying to make it more concise. The hospital didn't refuse to treat Dad, he just would have had to pay the full amount which is about $500 per day. My Dad had some money, but at $500 per day it would disappear very quickly. Also I wanted to use the money to try to get him home again if that was possible. I just think it is unfair to demand that sort of payment form a person who is vulnerable when they have virtually no alternative.
The wheels of justice move slowly, too slowly to save most families from all of this hardship and pain. Plus, the government is constantly cutting what it will subsidize these places to help, and the insurance companies have cut what is covered and how much is paid time after time. The families are becoming more and more responsible to take care of both their children and their parents, and the stress is litterally tearing families apart, and often killing the careg ivers under the burden of stress.
Medical facilities are out to make money, not spend it. Insurance companies are out to make money, not spend it, and I honestly feel, that the poor, the uneducated, and the ELDERLY are being "weeded out" of this country by the rich yuppies. A select group of people will one day decide who will be allowed to live, and who dies, and I don't see any way for the rest of us, to fight this thing.
I hope I don't offend anyone, and yet, if I do I do. The U.S. is becoming more and more like the Germany under Hitler, where he was trying to creaate the "perfect race of people." (Blue eyed, blonde haired, extreme intelligence, etc). It's very frightening, and we should all be very concerned.
I am truely sorry for all you've been through, and I can say that I have "been there, done that." What's the answer? God only knows.
Rainbow
Rainbow, Thanks for the hug! Sorry about your father in law and your mother.
I agree that it is a systematic problem of ignoring the weak and vulnerable. I am in Australia not the US but I think the same is true here. We have universal health insurance which is a great system. It means that anyone can get good health care, although the private health care is usually a little quicker, a little better and offers choice of doctor etc. A lot of people don't bother with private health care because the public system isn't bad but some people just like to have that extra piece of security and my Dad did. It is a moral thing too that if you can afford to pay your private health insurance premiums you should try not to burden the public purse. It really worked against him though, because being private he was actually prevented from using the public system even when it seems to me to have more appropriate facilities!
Maura, You really understand where I am coming from. Sorry to hear about the loss of your mother.
For Dad, some of the health care professionals were absolutely wonderful and I will be forever in their debt for their kindness to my Dad. Others didn't seemed to care much. Thats okay. Not everyone can care deeply all the time or they would all be burning out even faster than they do but the system should be structured so that people get dignified and well planned care regardless of the feelings of the professionals and it really isn't.
I do feel guilty about what I did and didn't do. I mostly feel guilty that I spent my time on the phone and running around viewing nursing homes, having meetings with doctors etc instead of just sitting with Dad and telling him that I loved him. The week he died I was so relieved to get him into a home that I spent more time with my family (who had been ignored a bit) and visited Dad even less. I fell very bad about that. Not so much guilty because it was a reasonable decision to make (not knowing that he was about to die) but I still regret it for reasons I am sure I don't need to explain.