The Final Journey, Part 2

Thursday October 6, 2016

As I sat in the evening and contemplated the decision I made earlier to put Gram on hospice, I thought about all of the wonderful memories. For the past couple of weeks, my life with Gram had been passing before me. Perhaps it was a premonition for what was now happening. At random times, images of wonderful memories and moments would pop into my head. They were special things we did together and things she did for me. There were memories of West View Park, Kennywood Park, Christmases, Thanksgivings, visits to Emlenton, saving me from thunderstorms and fireworks, comforting me during nightmares, high school graduation, college graduations, family day at Gateway Rehab, and many others.

Gram was my rock, my guide, my inspiration, and my friend. She was the first person I wanted to tell when good or bad things happened in my life. Whether it was a new job, new car, buying my house, a new relationship, ending a relationship, or getting sober, I couldn’t wait to tell her.
            These memories made me feel so grateful now, but at the same time, terrified. Even though I hadn’t been able to share things with her over the last several years the way I had before, I still went to her. I still got comfort and strength from her.  And I had never been able to imagine my life without her. Now I knew I had to.

Where would I be without her? How would I see myself had it not been for her? Would I know how to really care for and love another person? What type of person would I be? These questions churned in my head as I thought about losing her. Then suddenly I flashed back to the day I moved her out of Elmcroft Senior Care.

Leaving Elmcroft was another one of those turning points in Gram’s journey where there was no turning back. Gram had been taken to the emergency room because of a urinary tract infection coupled with a C-diff infection. She was very sick and almost died in the ICU, but was subsequently moved to ManorCare. We were convinced she was placed there to die. Even if she survived, Elmcroft wouldn’t take her back with a C-diff infection unless she could test negative 3 consecutive times. That was unlikely. And the hospital social worker was helping find skilled nursing care if we needed it. I had to move her out.

She didn’t have much there, but it took me hours that day to move her out of that room. My sobbing continually interrupted the packing and emptying process and I’d find myself alone, sitting on the bed or in the chair, paralyzed in my own emotions. It was a slow, difficult process.

But now, when Dr. Woodburn’s physician’s assistant called me after seeing Gram earlier and suggested hospice, she said, “She’ll get the extra help that she needs at mealtime. Maybe she’ll eat better.” “Ok,” I agreed. 

Although a momentary surge of hope went through me, I didn’t have a good feeling this time. Even though Gram had been on hospice twice before and discharged, this time felt different. She was only 105 pounds. She lost 2 pounds in just the last week and 12 since late July. My milkshake routine didn't seem to be working. Yes, I hoped hospice would get her additional attention at mealtime and just maybe she’d start eating again, but I didn’t think she was going to recover for the long term. I most certainly, though, didn’t think she’d be gone inside a week either.

Eating had become such an issue lately with Gram. She had actually become angry about it. That’s also why this time was different. “I don’t want it,” She’d yell when I tried to feed her. She even began throwing food at me, like the french fries she flung at me when I tried to put them in her mouth.  Perhaps she made her decision then. Perhaps that was her way of saying, “I’m done.” We always said Gram would decide when it was her time. In hindsight, I think she had.

The physician’s assistant contacted Heartland Hospice.  It wasn’t long before the hospice liaison contacted me and we planned to meet the next day at 1:00 pm in Gram’s room at ManorCare to sign the papers. I was sad. At that point, I thought the worst part of going on hospice was taking her off blood thinners and knowing that a clot could form, travel to her lungs or brain, and kill her. Later, I would find out it really wasn’t a big deal and eliminating the blood thinners was necessary.

When I visited Gram the night before, she wouldn’t even drink the milkshake. She was somewhat talkative, but her voice was soft and strained. She was weak, I could tell. She made mostly random sounds, but at one point said, “That Sandy is a good boy.” (Sandy was Jude’s old dog). Where did that come from? I thought, as she continued on with the random sounds.  Later, right before I left, she managed to clearly speak the words, “I have to get the hell outta here.”

But on this night, she lay in her bed, asleep and peaceful. She was breathing so lightly, it was if she was already dead, except her heart was beating.

The Final Journey, Part 1

Wednesday October 5, 2016

When I got the call back in June from the speech therapist at ManorCare, I must have been in denial.

“She’s not eating well. She seems to be having trouble swallowing,” the soft-spoken, kind woman said to me over the phone. I didn’t believe her. I didn’t WANT to anyway.

“I don’t think she has a problem swallowing. You just have to understand that she’s like a child during mealtimes. She doesn’t focus and she’s easily distracted. You have to keep her focused on eating.”

“Perhaps putting her on a mechanical soft diet would help,” she went on.

“We’ve tried before and she hated the food.  ‘That looks like shit,’ she’d say. But I guess we can try again, though.”

I agreed to it, but then the next day called the speech therapist back and changed my mind. I just knew she wasn’t going to eat her food that way and I didn’t want to put her through that again.

I decided instead, I would try to spend more meal times with Gram and bring her food that I thought she might like. Historically, I hadn’t visited much at mealtimes unless we were having a family gathering. When it was just the two of us, I was a distraction. Gram would constantly try to give me her food instead of eating it. “Here, it’s yours,” she’d say as she tried to hand things to me from her tray. “No, that’s for you. Go ahead, eat it,“ I’d urge.

In August, I got another call. This time it was a nurse. She said Gram lost 5 pounds in the last month. She wasn’t necessarily asking for action or making suggestions, she was just expressing concern. I had to step up my efforts. Gram was always trying to “fatten up” other people. Now it was my turn to fatten her up.

Around that time, I had read an article regarding Alzheimer’s patients and their eating issues. The author suggested minimizing the number of things on the patient’s food tray. The author went on to suggest that too many items can be overwhelming for the patient. They don’t know where to begin. Minimizing the number of items helps them focus. The article was timely and made sense to me. It was certainly true for Gram. When she would get her tray, she was immediately interested in all of the things on it – the carton of chocolate milk, the soup, the pudding, and the coffee, etc. “What’s this?” She’d say as she picked up each item and held it in front of her or tried to hand it to me.

I tried this approach during the recent visits at mealtime. First, I removed everything from her tray but the main course. I helped her focus on that. Once she was finished with the main course, I would remove it and bring forth the next item. It seemed to work, but I only had a few tries at it before she just didn’t want to eat at all anymore.

I started bringing milkshakes and burgers or fish sandwiches and french fries from McDonald’s, too. At first, she’d eat most of the burger or sandwich and some of the fries, but soon, it was only a few bites, then eventually, none. She’d still drink the milkshake though and I was happy to get at least those 670 calories into her.

I began to add things to the milkshakes as she drank them down. I added chocolate milk at first, and then I began using nutrition drinks. Each of these had 325 calories. Sometimes I could get her to drink all of it - the milkshake and the nutrition drink. It was close to 1000 calories. That made me happy. And when she seemed disinterested in drinking any more, I’d wheel her around the floor. Having the drink in her hands and being distracted while I wheeled her, she would inadvertently drink it down.

Over the weeks since the calls from the speech therapist and the nurse, Gram’s appetite waned as did her strength. On some level I knew what was happening, but I was denying it. She had gone through periods before of not eating and she always regained her appetite. After all, she was on hospice twice and discharged! 

I was hoping my attempt at the extra calories was helping, but Gram continued to lose weight. On October 5, during my visit, I asked the nurse, Rachel, to check to see when she was last weighed. It was the day before. She was 105 pounds.  I asked about her weight history. She was 117 on July 23 and just as early as a week ago, she was 107. She had lost 2 pounds in the last week. It seemed my efforts were not working.

“Maybe I should engage hospice,” I said to Rachel.

“Do you want me to call them?” She asked?

“How about having the doctor see her first?” I replied.

She submitted the request.