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Thoughts on Hospice

cobra1122's picture
cobra1122
Posts: 244
Joined: Jul 2009

I have read every now and then that the person with cacner has decided to just let it run its course and be home when it ends. Yet, they don't want to talk about Hospice at home, I have some thoughts to pass along.
If you read my Bio, you will see I have multiple Medical issues that have both hendered me and kept me going.
But I am 49yrs old, the end stage of my battle with lung cancer which has mets to bone and brain now along with other parts of the body( but I havent given up), I have less than 30% now of my heart working, and suffer from mini-strokes, early onset Altzhiemers and Parkinsons. My chemo which I would do again advanced my brain atrophy.
When I had my 6th large Heart attack in Jan 09 the Doc said that there was to much damage and that since I have cancer on pallative care and still smoke he wasn't going to do anymore.
That Day we talk with the Doc and case worker and they told us to get me on Hospice because they could help with alot of the care and stressors associated with gong home to pass away. We decided yes, though we thought that I was at deaths door, isn't that why you go on Hospice.
Well we found out No, Hospice is fully paid by our insurance (also Medicare) and they take alot
of stress out of the whole ordeal. They check on me daily, and I can even go to my volunteering without any problem, they encourage you to live life to the fullest. I have been on Hospice for 9 months and they have taken care of all my medications, even having them delivered as well as my oxygen with no charge.They brought in a Hospital bed because I can't sleep flat anymore. I see my Nurse 3 times a week more if I need it , I have a CNA come in on the other days,the Doctor comes by regularly, my Case Worker and a Chaplin come by regularly and help with any thing we may need. Right now they are trying to find a way that my wife and I can go to Disneyland together because we can't afford it , it will probably be the last major trip we can take.
When we have bad days they are there, for support for both my wife and I, it is a great relief for my wife and I both.
They monitor my pain and heart and do what ever they can to make sure I am comfortable, without going against my wishes. They have help with information for my wife and what and how to prepare for the end and help with making the arrangements.
They are there to help us, we haven't paid one cent, but even if we had to pay some it would be worth it. My Nurse caught my 7th heart attack in action and contacted my Cardiologist who had me in the Hospital fixing the last 2 vains that feed my heart. If I need a simple x-ray for a fall, which I have had some, they have it done in our home.

I realize this is a subject that not to many want to talk about, but I hope I have given some useful info from first hand experience and that Hospice is not just for the very end.

Our Prayers and Best Wishes to all Survivors, Caregivers, and their Families,
Dan and Margi Harmon

PBJ Austin
Posts: 347
Joined: Mar 2009

Thank you for sharing your info with us. We used Hospice when my father-in-law was ill and they were outstanding. I can't imagine what we would have done without them as they kept him much more comfortable than the hospital ever did.

Dan, I just want to say that I have learned so much from you, not just about cancer and Hospice but about life. You are an inspiration to me and I appreciate the time and effort you put into this board. You have surely helped others tremendously and I am priveleged to know you, even just through cyber space. Many blessings to you and Margi.

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

I second that emotion!

Take care,

Joe

cobra1122's picture
cobra1122
Posts: 244
Joined: Jul 2009

Thanks PBJ and joe,

I just hope that my experience helps someone look at things alittle differently, maybe more positive. And I plan on continuing on for along time, the alterative is not quite right for me right now.

Best to both
Our Prayer and Best Wishes to You and your Families,
Dan and Margi Harmon

shereenjay's picture
shereenjay
Posts: 12
Joined: Sep 2009

Well, in my experience they were only here 2 times. When my dad died yesterday, they came by and didn't seem to offer any help with greiving.

Thats all I know about them.

cobra1122's picture
cobra1122
Posts: 244
Joined: Jul 2009

Sorry, your Father passed away, but at least he is at peace. I am also sorry you had the experience you had with Hospice. It is sad to hear that there wasn't a better experience for you and your family with Hospice
I have had nothing but good from my Hospice provider and when my Grandmother was on Hospice she was very well taken care of.
Sometimes unfortunately experience differ from provider to provider, we have the same Hospice that my grandmother had and I have no complaints. I have to thank them for spotting another heart event and buying me more time to spend with my family.
None of our (survivors/fighters) need to deal with negative treatment, what your father and all of us are going through is bad enough. But I can on go by what I am Experiencing and what I have learned through others, and most of the time Hospice has been/is a positive relieve for those who need it.
But like anywhere else in the medical feild, there are those that have less than great records of care. In Arizona, there are several, but we investigated even the one my grandmother was with before going on board with them. I truly thought that Hospice was not what I nor my wife needed, I figured it would just cause more pressure during this time, but I was wrong and we made a good choice.

Again,shereenjay for both your experience with Hospice and your fathers passing,

Our prayers and best to You and You family'
Dan and Margi Harmon

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