Looking Back and Looking Forward...

The vote was unanimous with my family to welcome Hospice as an extension of our family in helping in Dad's care and assuring the dignity he deserves...

I received an email from Dad's primary care physician today, telling me he did not see amputation of Dad's left pinkie toe at this particular time.  The cryotherapy did not stop the infection, but the infection is not progressing and getting any worse.  I guess I anticipated the doctor to tell me Dad would need the amputation, which has given me some pause...

I found myself second guessing myself...asking myself, my brother and Mother whether I should make a trip to California and attempt to explain all this to Dad... I know Hospice will be a positive experience for Dad in that he will gain more visitors, have more advocates for his well being and care, as well as possibly stimulating him by new faces and new conversations....

I am mainly concerned Dad will react negatively if he should realize they are from Hospice. I don't want him to feel we betrayed him because of the distorted feelings he had about hospice.  Dad used to be a volunteer Chaplain and visited patients in nursing homes and hospice.  Unfortunately, it was the last years, prior to be admitted to the nursing home, when he was becoming more demented.  He was still compassionate, but he took on the symptoms, the regrets and the rights of those patients to heart. Even though he had some hospice training, his mind was confused and for him, Hospice means dying and he became very suspicious toward doctors.

Early on, three years ago when Dad was first admitted to the nursing home, he had recovered from his pneumonia, was on the last leg of the antibiotics, his leg ulcers were being treated and he was going to be transferred to the nursing home where he used to work as a volunteer.  Several of the hospital staff knew Dad,  which may have been both comforting and emotionally challenging for Dad.

I told the nursing home I wanted to be with Dad in the ambulance when they transferred him across the parking lot to the nursing home.  I waited all day at the hospital with my brothers, waiting for the hospital to transport Dad.  Finally, at 8pm, the hospital told me they would NOT be transporting Dad and they would move him in the morning.

Dad had called me at his home, where I was staying.  He asked me to come get him.  I told him he was still under the doctor's care and he had to stay there.  It was so difficult for me because he sounded scared.  I told him I would see him in the morning...

At midnight that night, the hospital called to tell me they were going to transport him. I told them I could not drive there as I have vision problems at night.  I argued with them as they had told me he would NOT be moved until the next morning. They assured me Dad would be escorted and doing fine with it and there were no problems...

The next morning I went to the nursing home and discovered Dad was still at the hospital.  When I arrived, Dad seemed "out of it" like he was drugged.  I inquired around and after piecing things together due to new staff on different shifts, I found out Dad had gone into "combat mode" and fought the transport, even hitting a nurse.  They sedated him with Halidol and decided to keep him in the hospital.

I raised HOLY HELL with the Administration office and the Director of Nursing.  I TOLD them he would not have gotten aggressive if I had been there. After feeding him breakfast,  I rode with Dad and got him settled in his room at the nursing home.  Dad still seemed sedated and seemed sleepy, so I told him I would stay until he fell asleep and Holl Doll (my sister) would be coming to visit him.

It was my birthday and I was having dinner with my husband and daughter when my sister called to tell me Dad was still sleeping and she had been unable to wait him up.  Not thinking anything about it, I told her we planned on coming the next morning.

When we arrived, Dad was still sleeping.  I asked the nurses and doctors and was told Dad had not waken for lunch, dinner or breakfast. His lunch tray sat untouched next to his bed.  The doctor had no explanation as to why he was not waking and described Dad to be in a sleep like coma.  I called the rest of the family and everyone came down to hold vigil at his bed side.  We decided against any intervention by MRI or tests because the doctor did not really have any explanation ...(except Dad had a bad reaction to the Halidol!!!) or guarantee Dad would wake up.  We decided to contact Hospice, but asked they not announce they were from hospice, should Dad awake.

As we were all milling about around Dad's bed, my daughter Jodee was sitting beside his bed, quietly and gently describing pictures my two grandsons had drawn for him.  I was watching her with tears in my eyes at how sweet she was with him, when I saw Dad's eyes flutter.  In an instant later, Dad opened his eyes.

When he saw all of us standing around his bed, his eyes grew large and his mouth dropped open in a huge smile of surprise and delight....we all gathered around him hugging, kissing, laughing, cheering and being so happily relieved.  My brother E____ referred to Dad's coma as his "Rip Van Winkle".

About an hour later, some of us had left and some were in the hallway making phone calls, I was in the restroom, and the hospice social worker arrived in Dad's room, announcing she was with HOSPICE and handing him her card.  Dad dismissed her promptly, yelling at her he was NOT DYING!

This memory is still vivid in my mind.  I was so upset with the social worker and she apologised profusely about forgetting she was not suppose to tell him she was with hospice...but we never broached the subject again, until now...

It is the common perception to equate Hospice and dying, but for most of our family, it now means the best quality of life we can give Dad in his remaining time alive.

I still feel protective of Dad.  I reminded the hospice expert several times about not mentioning the word hospice to Dad....along with other words such as dementia, Alzheimer's, biopsy or surgery.  Dad reacts in fear with any of those words.  He assured me they would not mention being from hospice, unless asked directly, then they would not lie to him.  He told me they would tell Dad they were friends of our family and give him a chance to feel more comfortable with the team, should Dad ask them.

When I told the hospice expert I would email him all the names of the members of our family and give him some background on Dad, his personality, interests and an over view of some of his medical issues, he told me how much it would help the hospice team....

My main concern is to be honest with Dad and I feel maybe I should go and talk with Dad and explain what is happening...but I think I waited too long.  I should have discussed this with him when he could grasp what I was saying.  Maybe I am feeling guilty that I failed Dad in a way for not preparing him...but would have he remembered anyway?

The hospice expert and Mom both feel we should go forward and my second thoughts are just protective symptoms with Dad...

Each day is a new day and we all do our best to find any remnant of anything positive.  We know we are coming from a place of love and only want the best for Dad...so it is that very thought I must continue to embrace...