in / out of home hospice

soccerfreaks said:

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

cabbott said:

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.

cad1223 said:

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