Three weeks ago dad went in for a routine check up with the doctors. I asked for an appointment with the palliative team too. Dad has been in a lot of pain and no matter what I did nothing helped. He had been sleeping at least 85% of the day and eating less and less. He'd lost 14 pounds since May and that was after losing 24 pounds over the year before. The last time I had talked to the geriatric focused doctor, she said that dementia patients aren't put on hospice until they can no longer communicate or feed themselves. I wasn't expecting her, (she leads the palliative team as well) to recommend hospice for dad yet. He was still getting up to the bathroom though not making it there in time any more, feeding himself, and at least trying to communicate.
When she saw him, and his weight loss, and looked at his other physical problems, which are numerous, she said it was time for hospice. Besides dementia Dad also has high blood pressure, CHF, pulmonary hypertension, an abdominal aortic aneurysm that is well over a cm larger than when they would normally do surgery, kidney disease, and possibly the early stages of multiple myeloma, a blood cancer. Along with all of that, he has severe arthritis and kyphosis in his neck that causes him a lot of pain. A term used a lot in the ER for people with multiple morbidities is "train wreck." My dad is basically a train wreck on steroids.
I thought I was more than ready for her to say he was ready for hospice. I seriously didn't think she would though. It hit me harder than I imagined. Turned out I wasn't ready.
The doctor wanted to admit him to the hospice unit at the VA hospital. I asked about home hospice, though in all honesty, I really didn't want him to die in my house. I don't think I would have dealt with that well. She wanted him admitted. She was very worried about adding more pain medication when he was already a huge fall risk. She thought for safety reasons it would be better for him to be in a hospice facility. The VA hospital in Des Moines has an almost brand new wing where the hospice floor was located.
Dad was less than open to the idea. He wanted to stay home. The doctor told him it was going to be too hard for me to continue to care for him at home and he needed to to be where he could have a care team. He still wasn't budging. "I don't like hospitals." He kept pouting like a toddler being fed broccoli.
Because I have guardianship over him, I had to petition the court for permission to move him. It would be a change in permanent residence so had to be approved by the court. It would be an involuntary admission so his guardian ad lietem (basically, his lawyer) had to also approve of the move. His lawyer had no objections. Working with the VA can be a challenge when it comes to the paperwork needed for the court, but the social worker was wonderful stepping me through it all.
The process took about two weeks. Dad was visibly declining. He became completely incontinent of both bladder and bowel. He ate some, but not all the time. I made him some pies, and let him have all the ice cream he wanted. No more dietary restrictions for him, I even let him have salt. Salty French fries, what ever he wanted.
I didn't talk about the move to him at all during the two weeks. I didn't want him becoming anxious about it. A couple of times I told him the doctor might want him to go in to have his meds readjusted. It wasn't a lie, but it wasn't the whole truth either.
The court order came through on Friday the sixth. I called and left a message for the social worker Sunday evening. She called the next morning, had put the referral for hospice in and told me she was mailing some forms out for me to sign and to just mail them back. In the back of my mind I was thinking "great, this is going to drag out another week."
Ten minutes later I got a call from admitting. She said dad was to be admitted the next day and I should have him at the facility by noon Tuesday. Had my head spinning.
I called the social worker back. Her head was equally spun. She said the doctor had just popped in and said the same thing. "I've never seen the VA work so quickly!" For two weeks it was hurry up and wait, then it turned into whirlwind velocity in ten minutes.
I debated what to tell dad and when. I was ready for the stubborn young sailor inside him to put up a fight. I didn't want his last day home to be spoiled by making him angry.
I called my husband. I let him know what was happening and asked him to bring home a banana cream pie.
I went in to try to get dad up and moving. He had been spending more and more of his days in bed. As I got his clothes set out, and his meds given to him I told him. "The doctor wants you to go into the hospital tomorrow. She wants to readjust your meds to see if she can get you feeling a little better. Try to control your pain more." Again, the truth, just not all of it.
I steeled myself for anger and opposition. I thought I was ready to handle anything. I held my breath. Dad looked at me and said, "Ok, whatever she thinks is best." I stood dumbfounded, but eternally grateful.
The next day he was admitted to hospice. I was again worried he would become angry. The whole process went very well. Very long, but very well.
They gave him his first dose of morphine before my husband and I left. Dad became a little silly and loopy, but you could see the pain drain from him. That was the first moment I knew we were doing the right thing for him.
I told dad I would be working on my grandson's birthday cake the rest of the week, so I'd come back on Saturday to see him. We live one hundred miles away from the facility. My sister live in Des Moines, and all of my children live in the area as well. So, though it is a long drive for me, it is the best place for Dad. Besides, I make the drive a lot, so it doesn't bother me.
Now, I know what you might be thinking. It takes almost a week to make a birthday cake? Really? I get pretty elaborate with the decorations. So.... yup.
My sister came to see him Tuesday Wednesday and Thursday nights after work. He was declining even more quickly. He was having hallucinations, which was new. He was very anxious. Not able to communicate a full thought, which was not new. But was still able to get out an "oh, boy." Something he said very often.
I got a call from the nurse Friday afternoon. Dad was not eating, at all. He was not taking direction. He was not responding anymore. He was going down hill rapidly.
I still had a few things left to do on the cake. I worked quickly as I could. I altered the plan some and left somethings off. When your grandson wants a team Umizoomi cake with Harry (from Harry and the Hendersons) on top, you just gotta make it happen.
I got it done, and got it in the car. Thank goodness it is November instead of July. The car would be at perfect refrigerator temperature over night. Probably better than being at home. I would have had a hard time getting it in my fridge.
I got to Des Moines. Dad was resting. He didn't see me come in. Stacey was already there. He hadn't said much since she'd gotten there. We talked, and I decided to stay the night in the room. She headed home about midnight and would be back in the morning so I could go to the birthday party.
Dad had a rough night. Very uncomfortable, very fidgety. He was completely unresponsive to me. All night and all this morning he hasn't said even one word.
My hope for him is to pass quickly, painlessly, and peacefully. At the same time I want him to wait until after midnight. Another death on another birthday is not what I want. My grandpa died on my birthday, I don't want that for Paxton.
I'm broken hearted.