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Re: Hospice care at home - worst experience ever [summitt] [ In reply to ]
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I experienced this with my young brother-in-law. He was 22 years old and died of colorectal cancer. His mother elected to have him transported home and have hospice care. Obviously I didn't say anything--it was their choice--but I thought the transportation was traumatic on him and he was no more 'comfortable' at home than he would have been in the hospital.

That was a very, very tough experience for me. Watching my brother-in-law suffer from the final stages of cancer, my wife and in-laws helpless and cleaning up after him all the while just waiting for the painful and inevitable end. . . . it was something that I hope I never have to experience again.

Fuck. I hate cancer. And I miss my brother-in-law. But I'm with you on the hospice situation.
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Re: Hospice care at home - worst experience ever [travelmama] [ In reply to ]
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Sorry to hear about your dad, it's always hard to see a parent/loved one go through that but it sounds like the hospice is making him comfortable as best they can. It does also provide peace of mind to the family to know that is happening.



"You can never win or lose if you don't run the race." - Richard Butler

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Re: Hospice care at home - worst experience ever [Sanuk] [ In reply to ]
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Sanuk wrote:
First, I am sorry for your loss, it would be very difficult to go through what you did.

Second, I will provide a little different perspective on hospice care

A number of years ago, when I lived in the U.S., I volunteered with the hospice program at a hospital. I went through a day of training and offered to spend time with the patients. There was a demand for male volunteers as most are female and sometimes the male patients asked for male volunteers.

My first patient ended up being a woman that belonged to our church. I recognized her but we had never met. At the time, she was told she had 2 months to live and I visited her 3 nights a week, for about 2 hours on each visit. She had 4 children but only 1 daughter in the same city and that daughter would visit her every day. Other than her daughter, and a few of her neighbors, I was her only visitor.

We talked about a lot of things and I ended up asking her about her marriage (her husband died about 4 years earlier), her relationship with her children (2 of the 4 children rarely communicated with her) and her feelings about her death. It took a few weeks for both of us to get comfortable but it she said it was very cathartic for her to speak about so many things.

When she died, her daughter asked me to speak at the funeral and I used that opportunity to tell her children a lot about what we talked about in those few months. I spoke about things that her children didn't know and also told them how their mother felt about them and how she regretted losing contact. The children (they were all grown up with their own families) were very grateful to hear some of the things I said. I, of course, kept some things to myself.

She wanted to die at home and was okay with just having morphine to ease the pain. If she had been in a hospital, she would have felt lonely and isolated. In that case, she was very grateful for hospice care and for the person dying, I can' say enough good things about the program. She was far more comfortable at home, and knowing she was dying allowed her to have peace and get her affairs in order.

You are right about the getting old part, it does suck.

I really do not like this thread, but have read through it a couple of times. This is an awesome Post. Thank you Sanuk!

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Re: Hospice care at home - worst experience ever [Billabong] [ In reply to ]
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I really do not like this thread, but have read through it a couple of times. This is an awesome Post. Thank you Sanuk!

I agree with what the OP wrote but in my experience anyway, Hospice care is hardest on the families. However, in every case I have been involved with, the patients are far more at ease because they are at home. Imagine people dying in a hospital, away from everything familiar. Nurses do incredible work but they have a lot of patients to see and can't always spend the time.

Patients can't always express it because they get morphine and not always coherent near the end but given the choice, I think it would be pretty unanimous that people would prefer to die in their home. I just wanted the OP to know that.

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Re: Hospice care at home - worst experience ever [Sanuk] [ In reply to ]
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Sanuk wrote:
First, I am sorry for your loss, it would be very difficult to go through what you did.

Second, I will provide a little different perspective on hospice care

A number of years ago, when I lived in the U.S., I volunteered with the hospice program at a hospital. I went through a day of training and offered to spend time with the patients. There was a demand for male volunteers as most are female and sometimes the male patients asked for male volunteers.

My first patient ended up being a woman that belonged to our church. I recognized her but we had never met. At the time, she was told she had 2 months to live and I visited her 3 nights a week, for about 2 hours on each visit. She had 4 children but only 1 daughter in the same city and that daughter would visit her every day. Other than her daughter, and a few of her neighbors, I was her only visitor.

We talked about a lot of things and I ended up asking her about her marriage (her husband died about 4 years earlier), her relationship with her children (2 of the 4 children rarely communicated with her) and her feelings about her death. It took a few weeks for both of us to get comfortable but it she said it was very cathartic for her to speak about so many things.

When she died, her daughter asked me to speak at the funeral and I used that opportunity to tell her children a lot about what we talked about in those few months. I spoke about things that her children didn't know and also told them how their mother felt about them and how she regretted losing contact. The children (they were all grown up with their own families) were very grateful to hear some of the things I said. I, of course, kept some things to myself.

She wanted to die at home and was okay with just having morphine to ease the pain. If she had been in a hospital, she would have felt lonely and isolated. In that case, she was very grateful for hospice care and for the person dying, I can' say enough good things about the program. She was far more comfortable at home, and knowing she was dying allowed her to have peace and get her affairs in order.

You are right about the getting old part, it does suck.

This was very kind of you to do. Sometimes, it is all a person wants is to have another person they can confide or discuss. I'm a surgeon and will occasionally have patients who lost a spouse or are dealing with something very traumatic. The ones that get me the most are patients who tell me they lost their spouse after 65 or 70 years of marriage. I cannot even fathom that kind of loss. My other patients get pissed off because they have to wait but I feel like I owe these people their time to briefly discuss losing their life partner of 65 years. We are all going to face it but it is so cruel. Glad you helped add peace to this family's life Sanuk
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Re: Hospice care at home - worst experience ever [summitt] [ In reply to ]
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I am sorry about your loss. I have been doing family medicine in a small town in Ontario now for 22 years. My father passed away 2 years ago in hospital in a palliative care bed. He did want to pass away at home but my mom didn't feel at all up to it. He was quite a bit bigger than her and I live quite some distance away so we opted to keep him in hospital. I can't say I have seen every situation but I've seen a lot. In my first month of practice I was asked to take care of a woman in her early thirties who was dying of a brain tumour and wanted to stay at home and her family doctor wouldn't do housecalls. I still remember going out there and having her kids running around oblivious to the seriousness of the situation. I took care of another man who died in his mid-eighties in the same home he was born in. I think hospice is great as well. . I don't want to be critical of your father's caregivers but if someone is dying at home I almost always arrange for them to have a pain pump that gives a constant amount of pain meds and has a button one can push to give extra when needed. The palliative homecare team we have locally is quite excellent. We preload syringes with injectable anxiety medications etc. The visiting nurses give most of the meds but it often family members are able too as well. It can work well. God bless those visiting nurses I think a lot of the time they spend more time with families than they are paid for. We also got a hospice locally and it is so popular there is a waiting list to get in. I guess each situation is different. Depends I guess on the resources in the community you live in. I agree that being aware of how much help you are going to get at the outset is important. What I often tell family that do take care of their loved one at home is that as hard as it is they can always remember that they stepped up at I time of need and should be proud of that.

summitt wrote:
My father just passed away after 4 days of hospice care after being released from the hospital. His wish was to die at home. My sister and I arrived Friday evening and by Tuesday he passed. Why hospice was great, coming and going and answering our questions, I wasn't prepared for the physical and emotional responsibility of caring for someone who was rapidly dying. Administering morphine, anxiety medication and providing other medical care was more than I was prepared for. While I stepped up and did what was required, I don't think I would ever place my children in a similar situation.

While I like to believe he died peacefully, it sure didn't seem that way to me. I don't know what hospice said to him and my step mother prior to electing to go the home hospice route, but if your parents ever elect this route, make sure all parties are involved in the decision on where to receive hospice care and what additional support you may need.

Getting old sucks

They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

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Re: Hospice care at home - worst experience ever [summitt] [ In reply to ]
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I lost my dad 11 years ago, he was 66 i was 30. We live right across the street form our church and he had come home in between meetings to use the bathroom. He enjoyed home court much like I do. On his way back, walking off the porch his heart gave out and he collapsed into the garden on the side. My little sister who would have been 27 found him probably 20 minutes after it happened. Hardest thing I have ever gone through, I tear up even know thinking about it. He fell into a thorny bush we had next to the porch. A few days later I went over and took a shovel and beat the hell out of that plant. People driving by probably thought I was possessed. Hardest thing was not being able to say goodbye, but then watching someone pass away at home doesn't sound great either. Getting old sucks, dying sucks.
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Re: Hospice care at home - worst experience ever [Brian in MA] [ In reply to ]
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Brian in MA wrote:
Sorry to hear about your dad, it's always hard to see a parent/loved one go through that but it sounds like the hospice is making him comfortable as best they can. It does also provide peace of mind to the family to know that is happening.
I am learning this daily. Days ago I thought it would be best if he pass away from the house but given the nearly four months he spent in the hospital, it only makes sense to have him at home. Seeing him sleep next to me in a comfortable resting position and being able to hold his hands, kiss his face and talk to him are great gifts given through hospice care. I could not do this alone. People in this line of work are true gems.


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DISH is how we do it.
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