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in / out of home hospice

jagged
Posts: 55
Joined: Apr 2008

The last chemotherapy did not even touch my cancer. The tumor doubled and spread to the other lung. I am making plans to stop treatment. In or out of home hospice?

My husband would like in home hospice. I just don't know if I could put him through that, or if he would be up to the demands. On the flip side, we live a distance from the city and he said it would be difficult to make daily visits for him and others in my family if it were out of home hospice.

I would like to hear others experiences, pros and cons, for in or out of home hospice.

Thank you in advance for helping with this tough choice.

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

I am sorry to hear of your decision to stop treatment, and even sorrier to acknowledge that you know what is best for you at this time.

Re the question, I have some experience with both sides of the equation, as my mom chose home health care when cancer got to her brain, while my father-in-law, who went into the hospital's ICU a few months ago with breathing problems that couldn't be fixed, ended up in what was basically a hospital-based hospice situation.

Your husband makes a very strong point re the difficulty for family members in making it to the hospice location as opposed to home. At home, the care comes to you, and you are surrounded by the familiar and by family. This is not the case in out-of-home hospice, of course, and you will likely feel some frequent loneliness in that case, which you don't want. Not to sound jaded, but convenience lends itself to company (:)). Beyond that, comfortable, familiar surroundings will prove comfortable and familiar not just to you, but to visitors.

If my dad is any example, I believe you will also be surprised by the ability of your husband to meet the demands. And, as a bonus, you may find some quality time that you suspected was no longer there. You may find, to be blunt, that your love is renewed or strengthened by this and by his commitment to you in these sad times. It may sound corny, but this is what I saw in my experience.

The out-of-home experience does not as readily permit the sharing of emotions, the closeness, the bonding, that you will receive, we hope, at home.

The care may not be as immediate in cases of emergency, but in our case, my dad learned to use the tools required to alleviate pain, learned to handle the hygiene chores, learned, basically, to become the principal caregiver, even though he knew nurses were coming regularly.

In the end, that meant so much to mom and therefore, to him.

Meanwhile, my father-in-law passed away while connected to tubes in a hospital rehab unit. We had visited him the night before, knowing that it was coming, but it was not the same. When my mom passed, I had been called, had flown into town, and was sleeping next to her gurney, holding her hand, when my dad woke me and told me it was over.

That is the difference, for me.

I wish you and your family the very best. You AND your husband are in my thoughts.

Take care,

Joe

jagged
Posts: 55
Joined: Apr 2008

Joe,

Thank you for your kind reply. And I agree, cancer has a strange way of strengthening love. I feel a bit guilty knowing my husband's grief will be that much more when I am gone.

My decision to stop treatment is still undecided. And, the truth is, I am running out of options. The last drug did not work, and things went from bad to grave. I started a new drug and will have another CT scan in two weeks. If it works, great. If not, I will be out of here in 6 months anyway. I just want to get things lined up before I can't.

I guess I see hospice care as a near vegatable state. Not as a bonding time. I need to research what is involved with hospice care.

Again, thank you for your reply.

Jo

cabbott
Posts: 1048
Joined: Aug 2006

A friend of mine whose Dad had a bad heart chose hospice care and got a little of both in home and hospital care. The hospice folks provided a hospital bed and a nurse for the house. If things required more medical care, he was rushed to the hospital as needed, then returned. Hospice meant that active treatment(like chemo for reducing tumor size) would be ended. Palative care would be provided as needed. Palative care can include drugs to control pain and maximize daily living ability. My friends who have had terminal breast cancer were only bedbound for little over a week or two at the end. Radiation treatments and drugs were used for pain control. One friend was shopping for groceries days before she died. Another went swimming at the Y two weeks before her last day. Both had family members around their bed at home when they died. The closest one to me said that it was hard but necessary to get wills,insurance, bank accounts, and stuff like that done in the months before her death, but that she felt much better once that part was done. Hospice provided counseling before, after, and during the rest. You are in my prayers.

jagged
Posts: 55
Joined: Apr 2008

Cabbott,

Thank you for your reply.

Last year I took six months off work for treatment. Some of the time was bad. Some of the time was actually very enjoyable. If home hospice care is anything like that, I would take it in a minute.

The more I research this, the more I find my stereotypes are maybe just not correct.

Jo

dscott
Posts: 35
Joined: Feb 2008

I kept my Johnny home with me and I am so glad for that descion. I am not going to say that it was easy but I am so glad for that time. I got to be with him all the time and have more intimacy than could ever been had in a hospital. I thank God for the time we were given and knowing he died with me at his side. I pray for you. Please try to let your husband have this time with you...Debbie

bettyskid's picture
bettyskid
Posts: 2
Joined: May 2008

dear jagged~ my mom died of lung cancer oct 27th 2006. i can tell you that the last month of her life hospice stepped in. in my heart i thought my mom was not that sick, but she was. to me she was doing good, i thought. at first my mom and i had doubts about hospice care, but looking back at now, it was the best, well the only thing my mom couldve done. the nurses were awsome. they took care of her every day. without them, i wouldnt have known what to do. thay prepared me for the worse. when she died, the hospice nurse took me in to see my mom. she held my hand while i said my goodbye. so at first hospice was a second thought, but in the end they were awsome. i think its for the best. they are so helpful and kind. id say try it out. its your best bet.

arbrab's picture
arbrab
Posts: 55
Joined: Nov 2007

My husband passed away in March of 07 with lung cancer. We talked about hospice care but never really got around to even getting them to the house. It was really tiring for me even to stay at the hospital with him when he had an infection. We had friends who had hospice and they really like it. Gave them freedom to do what they had to do at home or go to the store and not have to worry every minute about his care. In the end we went to the hospital, and he was only on oxigen. (his choice). I think he didn't want to put me through him dying at home. So I believe you should consult with your family, so the decision doesn't completely rest on your shoulders. And be at peace with the decision that is made. It's all in you and your familys best interest. I really don't know if I could have handled the in home hospice, being that we were very private people. If your husband thinks it's best, then he wants you near to him. Be at Peace with his decision. Make the best of the time you have and Laugh and do as much as possible with all your family while you can.
Bless you and take care.

jagged
Posts: 55
Joined: Apr 2008

Thank you everyone for your words and sharing your experiences. This board means a lot to me.

I am working out the death details and have the major items taken care of. Still working on Hospice. I called a hospital and they gave me some contact info. There are homes set up for short term hospice care. There are some close to where I live, too, and I have aranged to visit some of them. At this point, I figure home hospice until the last month or two, when I am out of it and need more contact care, then an out of home hospice.

cad1223's picture
cad1223
Posts: 2
Joined: Jan 2008

Dear Jagged:

My dad, age 61, just passed away on 5/20/08 from extensive small cell lung cancer. He battled it for a year. When the time came for my mom to make a decision about dad's treatment, she chose to bring him to a hospice facility, however, the facility was only 10 minutes from my home. Dad's cancer had spread to many places and one of them was the brain. He was very confused toward the end and was not really aware of where he was going or why. Mom felt that she could not properly take care of him as he needed a catheter and it would have been impossible for her to move him around (even though he was down to 120 lbs at the time of death). He would have needed round the clock care. The hospice facility was wonderful, however, if it had been far away from home, I don't know that she would have made the same choice. Unfortunately we thought that dad would have two weeks or so there, but he lasted only 4 days. However, in the short time we needed hospice care, they did everything to prepare us for the imminent death. They give you books on what to look for at the end, there are numerous volunteers that will come and give the family a break so they can go out for lunch, they have support for everyone and they follow up with the family for, I believe, 16 months after the death. We met with a social worker who sat with us for an hour to discuss everything from our feelings to the funeral preparation. There was much more available, but we did not have the need or the time to take advantage of everything.

I wish you the best of luck with your decision. I'll keep you in my prayers.

Cheryl

jagged
Posts: 55
Joined: Apr 2008

Cheryl,
Thank you for sharing this experience. This is exactly as I hope the end to be.
Jo

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