Parental Journal 04 March 26, 2015 afternoon

Transition time ahead. Dad goes from the rehab care paid for by Medicare to respite care, not paid for by Medicare. The facility allows up to three weeks of respite care paid for week by week, but after that, a contract for longer-term care needs to be arranged. I was given the application paperwork to review with Mom. Of course when given a quick overview of what needs to be considered for Dad, Mom said she wanted him home before three weeks. What an indomitable spirit she has…that, in addition to simply refusing to accept reality.
So I try to gently guide her through the details of forms. Later tonight I’ll review with her the packet of information for long-term care. She’s done quite a bit of crying today…so we’re taking it easy and she’s enjoying doing Dad’s laundry.

Dad will be moved tomorrow to receive up to three weeks of long-term care. Mom wants him to have physical therapy and I’ve conveyed her wishes to our contact person. That will be an extra fee per 15 minutes. She’s convinced that if he can walk, he can come home. It’s something she talks to him about all the time; he responds by giving her full eye contact and then turns his attention downward. He gives no verbal response.

Today she asked if he knew who I was. He looked at me and smiled. “That’s Jeanette. Your daughter,” she said. He continued to look at me and smiled. Then she asked him if he knew who she was. No response. “I’m Pearl. I’m your wife.” Another smile. She cried.
“He doesn’t look sick,” is Mom’s rationale. I tried to explain that his disease is in his brain. Sure, he has other health issues (heart, diabetes, arthritis), but he’s eating well and that’s good. However, his inability to walk on his own or to have a conversation…these are the signs of his deterioration. She knows that…but something in her can’t accept that he is as fragile as he is.

Speaking of conversation, Dad has a roommate: Bobby. Boy, is he verbal! He’s not happy being in the rehab facility again…doesn’t like the food…but does enjoy listening to CNN with the volume up. We visited with Bobby today just before lunch. He was happy to be introduced to us and then said, “Boy, did he have a rough night! He was coughing a lot and when I woke up he was gone and I thought maybe he died.” Of course, my mom went white/white. “He was coughing and coughing. I had to press the button a lot to get the nurse.” Dad has had a runny nose, so I suspect that was part of the problem. Bobby wanted to help and I’m glad he did. And then he told us, “Boy, when I saw him come into the room I thought this is gonna be okay ‘cause I have a roommate. We had a great time. Just talked and talked. They had to tell us to stop talking and go to sleep.” When I asked what they talked about, Bobby enthusiastically said, “Baseball!” And of course, Mom was thrilled to learn that Dad had an actual conversation with someone. Bobby is quite verbal and fun to converse with, but I doubt he’s 100% accurate. No way could Dad have a conversation about baseball. Later I told Mom to be careful what other guests say….that most likely Bobby enjoyed talking on and on about baseball because he had a good listener….and an almost deaf one, to boot. I did tell Bobby not to worry if Dad did not respond occasionally because he has difficulty hearing. Bobby nodded.

Mom sat with Dad and my other buddy, Tom, during lunch time. Dad’s appetite was good. It has been. He eats anything put in front of him. Tom, on the other hand, is more aware cognitively, so if food doesn’t look good he won’t eat it. He always eats dessert, though. Yesterday when I sat with them I learned that Tom played the violin, trumpet, and piano…was in a symphony…also in a band. He said he’s “going home tomorrow.”

Lunch time today was interesting. Mom sat with Dad and Tom. I was in the lobby outside the dining room and noticed I had left my phone at home. There was another person sitting there and we started chatting. He talked for an hour straight…all about conspiracy theories…”Luciferians”…that the government killed Kennedy…that fluoride in the water causes heart disease…that the government is responsible for 9/11…that George Bush Sr. was present when Kennedy was killed…..and he quoted authors, books, referred to dates, historic documents………Holy Cow! What a fascinating mind…and weird. He reminded me of some of my high functioning autistic students who have obsessions about things. Does all his research in the library and interviews authors/scientists. Not into computers…because he must know we are all watched and monitored CONSTANTLY when we use computers. After I listened to him for an hour, Mom came over and asked if I wanted to sit with Dad at the table for a while. It took me FIVE minutes to maneuver myself into the dining room because this fella continued talking. Whew! He’s recently retired from South Dakota…helping his mom because his brother in Colorado is too busy caring for his own wife…so the newly retired brother was told to “go take care of mom.”

Yesterday I overheard a husband visiting his wife. The wife was speaking loudly. “When I get home, I better find my bag of money!!” “You have a bag of money?” he asked. “Yes, and when I get home it all better be there.” “I think you’re dreaming,” he said.

Today an aide greeted a lady. “Hi, Martha. I’m going to take you to lunch.” “What?” “We’re going to the dining room now. It’s time for lunch.” “What for?” Martha asked. Boy, oh, boy…the behavior and conversations the staff here live with day in and day out.

Side notes: general concerns about mom and her short term memory issues: 3/26/15:

1. She fried some eggs today for breakfast. When we were at the bank an hour later I said something to the manager about mom fixing breakfast. She could not remember what we had for breakfast. “I know it wasn’t oatmeal.”

2. Mom thinks Dad believes he’ll be coming home today. He doesn’t talk.

3. When Mom makes a call, it is not unusual for her to have to dial the phone number 3 or 4 times.

4. She used a business card to make a call. Twenty minutes later she wanted to call again, but could not find the card. She/we looked everywhere in the area where she was when she made the call. Happens to me, but I give up after a few minutes. She spent 45 minutes repeatedly checking her purse and all its contents.

5. When checking mail, she has some difficulty determining what different mail is. She can usually tell junk mail…but I walk her through looking at each piece and we review what it is and what to do with it.

6. When we left the bank today, she said, “You know, it used to be that banks gave you bank books to use…with checks in them.” I told her they still do. She claimed she hadn’t seen one in a long time. I reminded her that we wrote a check yesterday and that we organized bank books together. She wasn’t convinced, so I told her I’d show her the banking things when we get home.

7. Each day she pleads with Dad to be more active with physical therapy…to try harder so he can come home. “Don’t you want to come home?” He just looks at her. She cries.