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From: Bev on 6 Aug 2008 20:42
Hey,

wondering if anyone has had experience with a good group for
caregivers of the terminally ill?

Thanks in advance,

Bev
From: NotYet1121 on 9 Aug 2008 07:57
On Aug 6, 7:42 pm, Bev <bebelestrnge0...(a)aol.com> wrote:
> Hey,
>
> wondering if anyone has had experience with a good group for
> caregivers of the terminally ill?
>
> Thanks in advance,
>
> Bev

Bev:

Yes I have. My Dad suffered with cancer back in 2001 - I took care of
him. In January of 2002 we got hospice. Dad wanted to stay in his home
and they came once a day and was so wonderful to him about everything
and so great to me. They were available 24 hours a day for me to talk
to them by phone. If his pain increased they would bring - even if at
2am a stronger RX for him and explain everything to us. They respected
our Father daughter relationship and bathed him because even though I
would have done anything for my Dad - to him I was always his little
girl and it wasn't appropriate. After he died - I couldn't call anyone
- I was with him and was holding his hand when he died - he was so
peaceful and truly I wouldn't have missed it for the world. I actually
waited about 6 hours before I called them to report that he died. I
got to sit with him and continue to talk to him after he died and tell
him how much I loved him and able to just be with him and kiss him
goodbye. As horrible as it is to lose your Dad or anyone to death that
you love. We had a very unique opportunity - we talked about
everything - we shared everything. Everything that we wanted to say to
each other we did have the time to say it all. I know dying of an
illness and knowing it is coming is very hard - I was very lucky that
they provided the pain medication to take care of his pain all the
time. It wasn't until 3 days before he died that he really truly had
horrible pain. That was so hard for me to watch and being my Dad - he
still tried to fake it it for me his little girl. Once I called them
and I was really honest with them as to when he died and that I needed
that time alone with him. They understood. Immediately they came out
and took the body and I couldn't watch him be brought out of his house
- covered up from head to toe. They left a beautiful fake rose for me
on his empty bed after they took him away. I still have it.What I
hadn't expected is that this did not end with his death. I was called
and checked on and invited to grief groups and even a grief counselor
came to my home - one on one and totally free. I might add that
Hospice is FREE. Once they have the case - they provide everything.
They brought a hospital bed in - they provided all medicines including
pain medication. I didn't have to call in the middle of the night to
his doctor or wait until morning. They just took over and every single
person was truly amazing and caring and understanding - both to Dad
and to me. Hospice isn't just for cancer patients but any terminal
patients. You get them by asking the actual doctor to add hospice - he
is the one that calls and sets it up. Normally the idea is that
Hospice comes in when it's the last 6 months of someones life. Even if
the person lasts a couple years - Hospice stays with them. My Daddy
and we started in January only lasted until March 23rd, 2002. The last
days were very tough and when he was in pain - I knew he was holding
on just for my sake. As much as I wanted him to live, I wanted him to
be free of pain, etc. He would not go until I held him and told him I
would be okay and always love him but he has to go to the light. I
told him with tears in my eyes I swore I would be okay and he had to
go to the light. Amazingly, during the last day or so he was awake and
then not actually asleep but was talking to his Mom and his Dad and
his brother who had passed 6 months earlier. I swear - I don't believe
that he was seeing things from medication or pain. I believe they were
waiting for him and he was both her and there at the same time. I
swear! When I told him to go to the light - he said he could see the
light already but he didn't want me to be sad. Daddy hated for me to
ever cry. He has said he had seen the light everywhere for days. I had
to talk so much to him and promise and swear and almost demand him to
go to the light. He told me "Well Baby" (Always he called me that and
I was 43 years old.) Your old Dad is stronger than you think. I told
him I always knew he is the strongest person I ever knew and that it
was his love alone that had taught me what unconditional love was. I
truly believe that if I had told him - "no don't go - I can't live
without you yet - I can't handle it" He might still be here. That is
how much my Daddy loves me. My Dad at the end - he had bone cancer in
literally every single bone in his body. He had stomach, liver and
other organ cancer. The last pet scan or full body ex-ray thing they
did of him which had been 6 weeks earlier. It lit up like a Christmas
tree - The doctors words. What I saw was that every single thing I saw
was bright white. His entire bones on the ex-ray were all the bright
light white - which meant cancer had taken everything. He even walked
until 3 days before he died. The doctors said they could not see how
he was alive 6 weeks before he died. Hospice even kept in contact with
me for over the one year memorial anniversary. They sent some great
information on what to expect in grieving. There is not a finer, most
caring, loving place on the face of the planet. I really am thankful
that we said everything to each other. When my son died suddenly and
without a clue he had a problem - he killed himself. So many words not
said - no goodbyes - no closure. My son died Thanksgiving 2005. I have
to tell you that if my son had to die - I would have so preferred
knowing he was going because I am haunted by all that was not said. I
love my Dad - but honestly half of me died when Josh died - the best
part of me. However, part of Josh also stays within me. I will never
ever be the same.

Sorry so lengthy - So in answer to your question - HOSPICE is what you
need. They can take care of the patient and the family whether your
loved one is in the hospital, nursing home or at home. They come out
every day and give you instructions etc and answers. You can call and
they will come out 20 times a day if you need them. If your loved one
wants to die at home - they will make it possible and provide
everything medically.

Lynn - I am my Fathers Daughter
Josh's Mom
5-25-1978 to 11-25-2005
he flew to New Zealand and jumped off the 14th floor of a parking
garage

Love is Stronger than Death!!!!
From: Bev on 10 Aug 2008 08:39
Lynn,

Thank you so much for sharing your father with me. I also lost my
Father to cancer. He was a professional firefighter for 25 years. His
cancer started in his lungs and spread to his liver and bones. I'm
really not a stranger to Hospice we did have it for dad his last month
or two I can't remember and for Gayle her last two weeks. I did not
know Hospice would begin at a six month diagnosis. We do not have a
diagnosis for my sister. She has pulled out of her second Pnuemonia in
30 days. She is ambulatory, and quite well at this time. She is very
synical, and nasty though . She is hard to sit with because very often
she goes into to these rants talking basically to herself about all
kinds of crazy things. It is the psychological and mental changes in
her that is wearing me down. They released her on 2 liters of oxygen
and she basically refuses to use it saying she does not need it. Maybe
she really doesn't on a 24/7 basis but when we go grocery shopping or
she is actively wandering around her place doing things she gets short
of breath so I tell her use the oxygen when you are active. I will be
checking into whatever services I can get for her in her home so I get
a break. The night before last was our first night here, my 4 year old
grand daughter J called cryng for me to come home, I was so saddened
that she missed me so soon. I promised we would visit her today before
she goes off to her dad's parents house. It is so hard to be away from
home. Thanks again for typing me. take care.

Bev


On Aug 9, 7:57�am, NotYet1121 <NotYet1...(a)gmail.com> wrote:
> On Aug 6, 7:42 pm, Bev <bebelestrnge0...(a)aol.com> wrote:
>
> > Hey,
>
> > wondering if anyone has had experience with a good group for
> > caregivers of the terminally ill?
>
> > Thanks in advance,
>
> > Bev
>
> Bev:
>
> Yes I have. My Dad suffered with cancer back in 2001 - I took care of
> him. In January of 2002 we got hospice. Dad wanted to stay in his home
> and they came once a day and was so wonderful to him about everything
> and so great to me. They were available 24 hours a day for me to talk
> to them by phone. If his pain increased they would bring - even if at
> 2am a stronger RX for him and explain everything to us. They respected
> our Father daughter relationship and bathed him because even though I
> would have done anything for my Dad - to him I was always his little
> girl and it wasn't appropriate. After he died - I couldn't call anyone
> - I was with him and was holding his hand when he died - he was so
> peaceful and truly I wouldn't have missed it for the world. I actually
> waited about 6 hours before I called them to report that he died. I
> got to sit with him and continue to talk to him after he died and tell
> him how much I loved him and able to just be with him and kiss him
> goodbye. As horrible as it is to lose your Dad or anyone to death that
> you love. We had a very unique opportunity - we talked about
> everything - we shared everything. Everything that we wanted to say to
> each other we did have the time to say it all. I know dying of an
> illness and knowing it is coming is very hard - I was very lucky that
> they provided the pain medication to take care of his pain all the
> time. It wasn't until 3 days before he died that he really truly had
> horrible pain. That was so hard for me to watch and being my Dad - he
> still tried to fake it it for me his little girl. Once I called them
> and I was really honest with them as to when he died and that I needed
> that time alone with him. They understood. Immediately they came out
> and took the body and I couldn't watch him be brought out of his house
> - covered up from head to toe. They left a beautiful fake rose for me
> on his empty bed after they took him away. I still have it.What I
> hadn't expected is that this did not end with his death. I was called
> and checked on and invited to grief groups and even a grief counselor
> came to my home - one on one and totally free. I might add that
> Hospice is FREE. Once they have the case - they provide everything.
> They brought a hospital bed in - they provided all medicines including
> pain medication. I didn't have to call in the middle of the night to
> his doctor or wait until morning. They just took over and every single
> person was truly amazing and caring and understanding - both to Dad
> and to me. Hospice isn't just for cancer patients but any terminal
> patients. You get them by asking the actual doctor to add hospice - he
> is the one that calls and sets it up. Normally the idea is that
> Hospice comes in when it's the last 6 months of someones life. Even if
> the person lasts a couple years - Hospice stays with them. My Daddy
> and we started in January only lasted until March 23rd, 2002. The last
> days were very tough and when he was in pain - I knew he was holding
> on just for my sake. As much as I wanted him to live, I wanted him to
> be free of pain, etc. He would not go until I held him and told him I
> would be okay and always love him but he has to go to the light. I
> told him with tears in my eyes I swore I would be okay and he had to
> go to the light. Amazingly, during the last day or so he was awake and
> then not actually asleep but was talking to his Mom and his Dad and
> his brother who had passed 6 months earlier. I swear - I don't believe
> that he was seeing things from medication or pain. I believe they were
> waiting for him and he was both her and there at the same time. I
> swear! When I told him to go to the light - he said he could see the
> light already but he didn't want me to be sad. Daddy hated for me to
> ever cry. He has said he had seen the light everywhere for days. I had
> to talk so much to him and promise and swear and almost demand him to
> go to the light. He told me "Well Baby" (Always he called me that and
> I was 43 years old.) Your old Dad is stronger than you think. I told
> him I always knew he is the strongest person I ever knew and that it
> was his love alone that had taught me what unconditional love was. I
> truly believe that if I had told him - "no don't go - I can't live
> without you yet - I can't handle it" He might still be here. That is
> how much my Daddy loves me. My Dad at the end - he had bone cancer in
> literally every single bone in his body. He had stomach, liver and
> other organ cancer. The last pet scan or full body ex-ray thing they
> did of him which had been 6 weeks earlier. It lit up like a Christmas
> tree - The doctors words. What I saw was that every single thing I saw
> was bright white. His entire bones on the ex-ray were all the bright
> light white - which meant cancer had taken everything. He even walked
> until 3 days before he died. The doctors said they could not see how
> he was alive 6 weeks before he died. Hospice even kept in contact with
> me for over the one year memorial anniversary. They sent some great
> information on what to expect in grieving. There is not a finer, most
> caring, loving place on the face of the planet. I really am thankful
> that we said everything to each other. When my son died suddenly and
> without a clue he had a problem - he killed himself. So many words not
> said - no goodbyes - no closure. My son died Thanksgiving 2005. I have
> to tell you that if my son had to die - I would have so preferred
> knowing he was going because I am haunted by all that was not said. I
> love my Dad - but honestly half of me died when Josh died - the best
> part of me. However, part of Josh also stays within me. I will never
> ever be the same.
>
> Sorry so lengthy - So in answer to your question - HOSPICE is what you
> need. They can take care of the patient and the family whether your
> loved one is in the hospital, nursing home or at home. They come out
> every day and give you instructions etc and answers. You can call and
> they will come out 20 times a day if you need them. If your loved one
> wants to die at home - they will make it possible and provide
> everything medically.
>
> Lynn - I am my Fathers Daughter
> Josh's Mom
> 5-25-1978 to 11-25-2005
> he flew to New Zealand and jumped off the 14th floor of a parking
> garage
>
> Love is Stronger than Death!!!!

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