01.30.2005 Hospice

I’m just going to post this on my website and send a few people a head’s up instead of sending an email to everybody, I think. We’ll see.

Last year, I think, mother found out she had cancer. Late last year they found that it went to her liver. Last Wednesday and Thursday my mother had several bouts with chills. My father called me Thursday night as I was heading home from choir practice. He couldn’t get my sister on the phone because they were ‘online’. I drove over to their house.

My mother’s body was so hot that she was extremely chilled as it was cooling off at the same time… I guess. She was VERY hot.

My father called my niece and she walked over and told my sister. I had no clue what to do except to try and comfort my mother. When Deborah arrived she was like… ‘release’ mother so she can die and go home. It was an emotional time. Both she and my father were very concerned. She’s watched my mother closer than I and had a different point of view. She felt she was dieing. I felt she was just in a lot of pain.

We stood around and comforted her… stroking her arms, rubbing her legs. She had an electric blanket, a comforter and a cotton blanket on top. She was incredibly hot to the touch.

My father tracked down their preacher and he came over for a while. We prayed over her. She started to cool off. Her pastor left. We took the electric blanket and cotton blanket off… and left the comforter.

Around 11:00 pm things were ‘stable’ enough to where I went home and Deborah stayed with mother.

After my quiet time, the following morning, I thought of Hospice. This is really why I’m writing this. I’ve always heard of Hospice being called when a person is at the end. I would like to give people an idea of what happens and what the process is. The website said that anybody who has been given 12 months or less to live qualifies. I was thinking we should’ve done this sooner… especially since it’s harder to fill the paperwork out as the person is lying there needing to get the pain medication.

It’s been a process. I didn’t realize it at the time. But, you’ll see why I say that.

I printed the information on Hospice out and took it over. Everybody was dead asleep. I wasn’t very quiet and still they did not wake up. I set the information on the chair beside my mother and went to work.

I stopped by Jenifer’s house (Niece #1) and let her know everybody was still asleep. Around lunch time I still hadn’t heard anything so I called my sister’s house to see if they’d heard anything. They hadn’t. So, I let Amanda (Niece #2) know what I’d done.

After lunch I waited a little longer and then couldn’t stand waiting anymore… and called. They were awake. I spoke with my father. I told him about qualifying if you’ve been given 12 months or less to live. I told him about the clergy being able to initiate the request. I even told him that it should be covered by Medicare.

He gave me to my sister and asked me to tell her. This was getting strange as I had left the information out in the open. My news wasn’t received very enthusiastically. She simply said thank you and she’d keep that in mind when the time comes. Ok.

Finally, around 4:00 pm I heard from my brother-in-law. He said Deborah had spoken to mother and mother agreed to have Hospice come in. He said Deborah asked me to call and set things up.

Me??? I’m nobody… just some single guy who lives at home with his cats. Me???

I figured there was something going on. So, I gave it a shot.

I called Hospice. They said that they still needed to have a doctors ok, not just the clergy. Great… I knew their pastor. I didn’t know their doctor. I hate HIPPA. I guess I could’ve called the pastor and had him call the doctor. But, I did it.

I called my mother’s doctor. We both go to the same family of doctors. She just sees a different doctor. I called the nurse and told her that I needed to have the doctor call Hospice and start that process. She said that mother would need to come to the office with her papers. I told her flat out… Mother is not coming in. Oh. She turned me over to another nurse who said the doctor would call before he left at 6:00 pm.

A few minutes later another nurse called. She said the doctor had no problem with initiating the process. Great. She said she would have Hospice contact me. I wondered why? My sister’s the one waiting for the call. I guess it was because I initiated everything. I told Deborah and then we waited… and waited. You have to remember. This was started late Friday afternoon.

At 8:00 pm Deborah called to say she hadn’t heard anything. I called Hospice. Within 5 minutes they were talking to my sister. (No… no… no… I was nice. They were just really busy on Friday.) They set up an appointment with a nurse for 9:00 am the next day, Saturday.

I went over on Saturday and watched as they processed the paperwork, went through the motions of getting everything set up. Mother was worn out and tired. I sat there thinking this was something that could’ve been initiated before it got to this point. Oh, well. Hind site’s 20/20.

The nurse said we could get a hospital bed. ‘We’ didn’t want one. That didn’t quite make sense as I’ll explain later. They have volunteers who will come and sit for an hour to relieve you. ‘We’ didn’t want that, either. She did sign us up for oxygen and some pain medication. That sounded good. They contract with Walgreens and have a pharmacist on-call to handle anything. She said we should hear something by 4:00 pm.

I went to lunch with my dad. He has Sonny’s. I have Mojo’s. I was driving. We went to Mojo’s. J He enjoyed it. On the way there we stopped at Walgreens to pick up some Depends. It’s getting difficult for mother to get up and walk down the hall to the bathroom. This is for when the time comes when she can’t get up by herself.

As we pulled into the driveway my father broke down a little and commented that the doctor gave mother a year to live and that probably really started LAST February. Hmm… more on that later.

At 4:01 pm my sister was calling me to let me know she hadn’t heard anything. She tried getting through to the pharmacist but was getting the run around. I called Hospice myself. I used the phone number I had. I briefly explained what I wanted and then got right through to the pharmacist. Hmmm. I didn’t say anything. The medication was sent out by courier at 3:00 pm. There were several orders that had to be delivered. Shortly after that the medication arrived.

The next nurse was supposed to be there between 5:30 pm and 6:00 pm. Deborah waited… and waited. Finally, at 6:10 pm she gave mother the morphine. 10 minutes later the nurse showed up. The nurse examined my mother and found her blood pressure was 100 over 58. After talking with her a few minutes and giving the medication a chance to work she called the doctor and got permission to give her a little more. The first dose didn’t seem to take affect. It started kicking in about an hour later.

On Sunday Mike called and asked for help getting mother out of the recliner and into the hospital bed. What? Hospital bed? Yes, they got the hospital bed. I went over around 3:00 pm. They’d already transferred her over. It seems that Hospice will deliver the bed but, you are responsible for getting the patient in it. The bed arrived around noon. It’s a nice bed. Come to find out it’s better than what my father had when he came out of rehab. THAT’s why they didn’t want it. He did not get an electric bed that folded in several places. This one did. Mother was very happy.

Before I left for church Deborah told me that the medication was working TOO well. Really??? She said, yes. Mother hasn’t needed anymore since yesterday. That would explain why she’s kinda slurring her words. Deborah said she got really happy last night. She felt that she could get up and walk around without any problem. She also felt like she could fly.

Deborah thought that was enough and had Dad turn out the lights and go to bed. As the lights went out Deborah said, “Goodnight”. Mother said, “Nice try”. Golly. What do you do when YOUR mother has experience doing the same thing to HER Alzheimer stricken mother??? It’s just not that easy. Fortunately, she zonked out. She slept ALL night long.

I called tonight and offered to sit with mother after work during dinner this week. Deborah didn’t hesitate to take me up on the offer. We’ll take each day at a time and see what happens.

Back to my father’s comments. Remember Phillipians 4:8-9??? (It’s not Ephesians. But, I knew it was one of the “Ian’s”.) Think about things that are True and the God of peace will be with you. What is true? What if my father is right and the clock started ticking LAST February? That’s been a sticking point with my sister. She did the research on my mother’s cancer and always felt that it was an aggressive cancer… that my mother should’ve been doing more to fight it the entire time. I felt it was my mother’s decision on what to do. Yet, I felt like my sister was right.

Maybe there was a certain measure of denial there. Maybe the best way to fight it was with an optimistic attitude. Maybe it’s just all up to God. It was all three, I think.

Think about it. If you accepted it then it might be harder to be optimistic. If that were the case then she could’ve very easily gotten worse LAST year. Do you realize what all’s happened in the last year?

My grandmother fell and cracked her hip (February). Mother turned Jaundiced and had surgery to insert a stint (March). She had cancer surgery (May). I had the PSA test (June). I had the biopsy (July). I found out I had cancer (August). We had September off. Dad had his eye surgery (October). Mother had her liver biopsy. I had my prostate surgery (November). Finally, I think, Grandma broke her hip and went into rehab (December). And, this is just a summary of everything that happened last year.

Do you see it? Mother was instrumental in assisting with everything that happened last year. Quite simply, it was the will of God that she did what she did last year. That’s TRUTH. That’s what you have to concentrate on and think about.

What’s going to happen in the future? Mother’s going to die.

My father felt that she started “going down” right after the doctor’s told her the chemo wouldn’t cure her. Denial was loosing a foothold. Not jumping at the chance to call Hospice was a step in the process. Not getting the hospital bed was another step as well. By delaying Hospice, by delaying the hospital bed it was like denying what was happening. As it was accepted, one by one, reality finally became reality.

There are 5 steps to grieving: Denial, Anger, Depression, Bargaining, and Acceptance. We will go through each step to varying degrees. Sometimes we repeat some steps.

This morning as we were getting ready to sing in the service, it hit me. I was looking forward to today all week long. The songs we were going to sing were gonna be just awesome. The one song I really looked forward to was a special arrangement of “When I Survey The Wondrous Cross.” As we reviewed that song it hit me. Mother would be sitting at home instead of going to church. She would be looking for me on tv.

I thought I should take the robe off, hang it up and go sit in the service instead. I was getting teary eyed and emotional. You know… we’re supposed to look happy when we’re singing in the choir. I was stubborn. I went up the stairs and into the loft anyway. We had to sing the opener. I mouthed the words a lot.

Truth. I was looking for truth. I finally found a little piece of it.

Mother’s going to heaven. I had a little peace, finally.

When we got to the main song I was able to sing out loud and strong, amazingly. It was awesome.

I was glad I stayed and sang in the choir because my father told me she made a point to sit up and watch for me. And, as it happened… I was on tv and she did see me.

01.31.05 – Monday – 4:00 am

Just an update since I wrote what was on the website...

My sister just called to let me know that mother has 'stepped down' a few rungs.

There was no 'output' yesterday. She's not getting much in the way of fluids... not much in the way of food. I forgot to mention that she was slurring her words yesterday.

Yet, through all of this she's in good spirits. No pain. The morphine isn't going anywhere... just circling around.

Her feet are cold. Deborah feels like everything is shutting down.