Now for a Great Weekend

It's been a roller coaster of a week.

Sunday ended with us planning up a storm for this coming weekend and the arrival of the rest of the family. Two main issues: was Mom going to make it? and how to break the news to Mom about her impending visitors. (She doesn't always take well to surprises unless she's in on the surprise. No surprise!)

Susan called her cousin Debbie who has had a long career in social work most recently in hospice. Debbie can talk about such things, she lost her own father last year. End of life does not always come quickly. As long as the patient is drinking water, urinating, is talking and has reasonably good blood pressure and oxygenation, life can go on for quite a while. Susan's concern was that Polly stay around to visit Mary the following weekend. She called Mary with a report that things seemed marginally stable.

Then I called the apartment to talk to Dad. Of course Mom answered as well, but she was not conversant, a radical change from the previous day. I was left with quite a dismal impression. Michael Malouf visited the same day and did not have an alarming impression as you can read in his comment to the Sunday blog post.

Susan's sister Meg visited Mom Tuesday and had a good visit. She stayed with Mom while Dad went to his rehab class and found her time in Mom's room to be slow, quiet, peaceful and relaxing, much as Susan had found it relaxing Sunday morning. However Mary talked to her yesterday afternoon and had the same alarming reaction that I had had. So much so that she flew down Wednesday, a day earlier than planned.

Mom's nurse was surprised as well by the sudden decline in Mom's condition. She suspected an allergic reaction to the morphine and has switched her to synthetic opiates and a strong dose of benadryl. Mom's skin had become exceedingly dry and her lips were swollen and cracked. Her mouth and throat were inflamed as well, making eating painful as well as difficult. I hope the synthetic works as well as the morphine making her attempts to breathe more comfortable. Jean-Aimee (her nurse) also ordered round the clock nursing as well, so someone will be there besides Dad.

Wednesday I took a long lunch and spent a couple of hours with her and saw the changes for myself. Mom was in good spirits and Dad said she was having a much better day. We had a good visit. Before I left, I asked her if she remembered that Brother Stephen (nee Andrew, Michael's best friend growing up) was being ordained Saturday. "Oh, of course, yes. And you received an invitation!"

"Yes," I said, "Well I think he's going to have a surprise guest."

"You mean Travis is coming up?" (From San Antonio.)

"Well, Travis is coming up, but that's not the surprise I was thinking of."

She looked and me and her eyes got wide. "You mean Michael is coming?"

I nodded. "Yes he and Laura will be here Friday morning."

She closed her eyes, took a breath and said softly, "I'm going to get to see Michael."

And she's going to see Britt who's flying in from Los Angeles. Anna is coming from Salt Lake and Caitlin is coming as well. Mary will get to see the joy on Mom's face when she breaks the news.

It took a chain of 23 emails to get everyone moving on the same page. The big question was whether to come all at once or one at a time. Britt used mathematical notation to express it best:

JOY + TOGETHERNESS > ONE-BY-ONE

Arriving earlier than planned

After talking to Mother an hour ago, I have decided to come to Dallas a day earlier than planned. I'm arriving Wednesday night at 7 pm. Frontier Airlines.

A Long Sunday at the Apartment

About midnight Saturday, Helen sent an email that started, "Hello all. This is hard, but Mom has worsened considerably the last few days..."

That's the kind of message that keeps you up at night.

So, this morning I called early (though I waited until after 9am) and both Mom and Dad answered the phone. I asked Dad if he was going to church, he said he was and I said that Susan and I would be over to stay with Mom while he went. I decided to dress for church and so I went with Dad while Susan stayed with Mom.

I stood with Dad on the old man's row (these guys make him feel young!) It felt good and I think it meant a lot to Dad.

Susan has the remarkable ability to slow down to Mom's level and worked with her through her complex maze of lists and amazingly produced a couple notes in envelopes almost ready to mail. Ask her to relate some of the high points when you see her. Susan found it quite relaxing and the tension neckache and headache she has been accumulating all week were dissipated.

We visited a little after returning from church, then Susan and I made a chicken run to Bubba's. We brought back plenty of fried chicken including livers, sweet potatoes and green beans. The next trick was to get Mom to eat.

I picked out some small tender morsels of breast meat and liver and buttered a roll, but she said it was too dry and rough to swallow. So I sliced a roll very thin and spread some mayonnaise and thin sliced chicken to make a small tender sandwich. It took her forever to chew and swallow, but she managed to get about half of it down after Susan gave her a talking to. "You are just getting weaker and you have to eat and you have to be strong enough to visit with Mary next weekend. You just have to. Eat for Mary." Mom agreed, and took another bite.

Later Susan cleaned the crust off a liver and cut it into tiny pieces and brought it in with a bit of sweet potato. She had a bite. I called the liver Mom's Little Liver Pills and she laughed as hard as I've seen her laugh in a long time.

So that was it. Half a tiny sandwich, a bite of sweet potato and a few nibbles of liver. And half a small bottle of Coca-Cola. She weighed in at 85 pounds yesterday. That's with bed jacket, night gown, t-shirt and socks.

We left plenty of chicken, rolls, livers and vegetables for Dad. With Mom not eating much, he's not eating much and he's lost more than a few pounds over the last couple of weeks. There were not many meals left in the fridge, but a number in the freezer. Helen is going to help him work out a menu schedule so he can defrost ahead of time and reheat when it's time for a meal. Another learning curve.

He seems to show better patience with Mother. It's so difficult to have a clue as to what he must be feeling. He's just always the same old Dee Don.

Mom is definitely getting weaker. Her morphine dosage is up. When we saw Helen and Will, he explained how the morphine really works for COPD patients. (Let's see if I get it right...)

The problem is the gasping/panic reflex. When the body can't breath and thinks it can't get enough air, it gasps for air. When gasping doesn't work, panic sets in. (If you're in water, that's when you start flailing your arms and you drown.) The morphine calms the gasping reflex. The time release pills were added because her breathing is getting worse and the morphine base line needs to be greater. The reason the patient self-administers the liquid dosage is because they are in touch with the intermittent fluctuations of the gasping. Her breathing is not better, in fact, it is getting worse. As it gets worse, it requires more morphine to calm the gasp reflex.

(Of course more morphine is music to my ears. I love the stuff. I find it to be a warm blanket in which to sink. Calm music and a timeless room wouldn't be bad. It can make the world seem fuzzy and remote.)

Her weakness has its drawbacks. The trip from bed to bathroom is dicey and Mom needs help between the last touch of bed-frame to the first touch of the bathroom counter. Monday I'll ask Dad if they're considered a walker. Not a fancy one with handbrakes, but a basic lightweight aluminum walker (the kind with cut open tennis balls.) Who knows if it will even fit? Who knows if she would use it?

Susan and I left about 4. It had been a long day. After a trip to the Central Market, we met Helen and Will at 7 for some tacos and made plans for next weekend. It will be interesting indeed.

Come on Mom, Eat!!!

 

For a long time now, we've all been urging Mom to eat more, but as the emphysema has gotten worse, the act of swallowing has gotten harder and harder. Now the morphine treatments to help her breath seem to have dulled her appetite even farther. It takes her forever to chew and swallow a bite. Watching her, it just looks like each chew is just the most exhausting thing ever.

Friday night Helen fixed her lobster. We were glad to hear that she cleaned her plate.

 

A Brief Follow-up and a Change in Perspective

I don't think I mentioned in my report on Monday's visit that Mom was confused about her morphine schedule. She took her first pill at 9:30 am and was supposed to take another one four hours later. Except that she got confused and took it at 11:30. (Just the kind of trick that Sister Morphine likes to pull!) As the hour got closer to the scheduled dosage time of 1:30, Mom started thinking that it she took another pill, she would be back on schedule. (Sister Morphine again!) It took a good deal of persuasion on my part to convince her that it would be better to wait until 5:30.

When Susan talked to Alice, Marilyn (and John's) longtime caregiver, Alice said that one of the things she didn't like about hospice was the way they pushed the morphine. Alice and I were both concerned about overuse of the morphine, but now I realize that we were concerned because we were thinking about addiction in a long term perspective.

Hospice does away with the long-term, so does it matter how much morphine Mom takes as long as it is palliative?

Hospice took her off of Lipitor. It has some nasty side-effects that make you feel lousy and weak. Long term cholesterol build up is no longer a concern.

If it makes her feel better, do it!

Tuesday, they changed her prescription. Dosage was increased and she now takes one time-release pill every 12 hours, one in the morning and one in the evening. It's off the bedside table and into her daily meds.

And that seems smart.

Monday Drop In Visit

Dropped into the aparment after lunch on Monday for a visit.

Atmosphere was relaxed. A woman from church was just leaving having dropped off a dozen decorated 'baby bundt' cakes. Dad was still in the parking garage saying goodbye when I came down the stairs and slipped into the apartment. Mom was lying on her bed when I walked into her room.

She really enjoyed Travis's visit over the weekend. Especially when she learned she didn't have to feel guilty about keeping him from helping Susan get ready for the first day of school.

While we visited, she shared a couple of her blessings. One was a letter from June Bishop (she made a copies to distribute) in which June recalls memories of their friendship back to its beginning in second grade. Many of the anecdotes were new to me. I never know that Mom dyed her hair with hydrogen peroxide. It was an experiment and it turned her hair orange instead of blonde. Grannie took a "dim view," she said.

She also had in her hands a diary that she had started in January, 1946. She read an excerpt."Donnie and I double dated tonight with Vic and MBW. Vic was in a bad mood, but Donnie and I had a great time! Oh, do I love that boy!!!" She said she wrote that every few days for as long as she kept the diary.

Dad said, "You never told me."

"Well, you never said 'I love you' either," Mom shot back. Surprisingly, they both let it drop.

I signed documents to become signatory to their accounts. Mom seemed to struggle a little. I think it was the morphine. Little things seemed to confuse her. But Mom let them drop.

(I'll pause a minute and let those last words sink in...)

Anyway, I hope she lets us read that diary. She's screening it to to make sure it's OK for us to read.

It was a good visit.

The Visit That Didn't Happen

Susan has been keeping Marilyn up with Mom's condition. Mom's being sick is one thing that Marilyn does remember and she asks Susan about Mom from time to time. After Mom enrolled in hospice, Marilyn expressed interest in paying a visit to Mom and the problem of making the visit happen has been bouncing around. With Travis up for the weekend, (he spent much of Saturday at the apartment and helped host visits from both the Wolfs and the Kings) it was tentatively on the agenda for today.

Logistics was the major hurdle. Marilyn does not walk well at all. Steps are next to impossible for her. Travis had to lift her up and down our front steps last time she was over at Westglen and he is not trained to move her safely. Strapping her into a wheel chair and lifting the chair up the stairs seemed the best way. Then, having conquered the steps, the wheel chair could take her just past the front door, and then she would be on her own with her walker. Access is not easy! There is a level entry way off the parking area, but the halls stay in the middle area of the building, you just can't reach their apartment.

Still, Susan called to find out if Mom was up the visit. She received many signs of discouragement and no hints at all of encouragement. The last time Susan had mentioned the visit to Marilyn she had just looked away and not answered. Today, after talking to Meg, it seemed that the obstacles were just too great.

Susan then called Polly to tell her we weren't going to bring Marilyn over.

Mom said she thought that was best, then told Susan, "to give her an extra hug from me. She was such a good friend..."

Susan hung up the phone, closed her eyes and said. "That was so hard."

We all sat together at the kitchen table and had a good cry.