Up Through the Night

My mom has ups and downs. For the past two years I’ve wondered daily if today might, perhaps, be her last. I think that those feelings have been there because I cannot imagine further decline in her health, but really, she has had plenty more to go.  Monday, however, she refused to eat or drink very much at all.  She was weak because of it. Tuesday I was determined to get a good, healthy amount of food and especially water into her, but as I got her out of bed in the morning, she seized in my arms, and I laid her right back into to bed. When she has her seizures, particularly big ones, and this was a big one, they tend to sap her of all her energy for several hours.  There would be no getting drink or food down her for awhile.  By the end of the day, she still had accepted very little nourishment. She was weak. Her pallor was greyish. And when I laid her back in bed, she would make little gasps for air. Though I had tucked her into bed before and wondered if it would be the last time I would kiss her good-night, that night I felt compelled to stay with her. I couldn’t imagine it would cost her sleep to have me stay in her room; she wasn’t even acknowledging my presence.

I sat at her table typing on the computer watching to see if her blankets would continue to move up and down with her breaths. Whenever she would gasp, I would look and wait for the rise and fall. I didn’t dare say that I felt this was the end because I had misjudged so many times before, but I still felt that this time was different. She was different, and I felt compelled to stay with her.  I finally decided to climb into bed next to her and just hold her hand. Sadly, I worried about waking her and scaring her because she usually doesn’t recognize me, but she didn’t awaken.

As I was lying next to her, I forced myself to remember her as I used to know her. I was talking to Spencer earlier that day, and he said that even though he has memories previous to Mom’s dementia, he doesn’t really remember her prior to now. I had to confess that I have the same problem.  I often have to remind myself what she was like, how independent and engaging she was. I looked at her lying there on the pillow next to me and rehearsed the many wonderful things that I admired about my mother.

At about 2 am, my cute, half-asleep little Matthew came and found me and crawled in bed next to me.  I found myself once again amazed at the ironies surrounding me as I was sandwiched between the two people who demand the majority of my time, both utterly dependent, although moving in opposite directions: Matthew gaining independence and Mom losing it. I again was impressed by the love, the overwhelming love that I felt for these two souls who take so much of my life. I felt blessed to have them be a part of my life.

I eschewed Matthew back to Greg where he could snuggle into my bed, rolled back to look at my mom, confirmed that things were okay, and let my eyes droop closed for a few hours. I awoke with a start a few hours later, checked to watch the rise and fall of the blankets, confirmed once again that things were well and fell asleep again.

Morning came. Mom was still with me. She smiled at me as I rubbed her arm. Thoughout the day she improved. My worries, once again, had not been justified, but did I regret the night? No. There was a sweetness in reviewing some of my tender feelings for my mom.  A friend reminded me, as I explained how hard it is to watch my mom die, that there is no place that I would rather be. As difficult as it is, I love her and this is a service that I want to give. This is a service that I can give. It isn’t easy. Not everyone can do it. Everyone has their own path, but this is the one that I have chosen. It is made easier by a supportive family and supportive friends. 

Questions

Rough day.

How much more decline can there really be?

What thoughts go through her head? Do thoughts go through her head?

How much longer does she have?

Will she rebound tomorrow?

When do I hire more trained help? How much can I do on my own?

Who, if anyone, does she recognize anymore?

What can I do to make her life better?

New Love

[I was reading back through my journal and ran across this entry. I thought it pertinent to this blog.]

7/11/2012

                “Stay in the house. I’m just walking out to get the garbage cans,” I explained, presumably, to two year old Matthew, but the statements subtly had a larger audience. “If you come out your feet will get dirty and the concrete is starting to get hot. And you don’t have shoes on,” I said as I walked out the front door. I looked back once to see if anyone was following me. No. They were still inside, but as I walked back up the driveway towards the house there were my little Matthew and my sweet mom both standing with fingertips on the glass door waiting for me to come back inside. As I looked at my sweet mother mirror the actions of my toddler, I felt the love that has grown in me since she moved into our home. It was slightly unsettling, in a good way, how similar that love felt to the love I have for my little dependent Matthew.  I say the love has grown because, to me, it is different from how I used to love my mom when I loved her as her daughter, a daughter of an independent, nurturing, intelligent, busy mother.  This kind of love—or perhaps a better word would be “relationship”—had to grow because it was not natural, at least not to me.  It was preceded by mourning and loss for the mother that I knew, by fear of who my mom was becoming and perhaps, by resentment that my long-time friend and confidant, my rock was no longer those things.  (It may seem strange to include “friend” as something that was lost, but it was, at least the friend I knew. I can’t maintain the same friendship when my mom does not even know who I am sometimes.) So a new love has grown, a love where I still feel blessed to have her in my life, a love that is a nurturing love that, as I said before, is unsettling in how similar it is to my love for my toddler with all of his toddler tendencies.

 It was not the first time that I appreciated the similarities between the two. This time it was their tendency to follow me wherever I go. They shadow me. They want to be where I am and watch what I am doing--And not, necessarily, from across the room.  Just like Matthew pulls on my leg or pushes a stool to insert himself into my tasks, Mom will sidle up next to me, right next to me, as I cut vegetables, fold laundry, read a book, or talk on the phone. I smiled, internally, one day when I laid down on the couch to read a book.  Within ten minutes, Mom was perched on top of my feet at the end of the couch and Matthew was trying to snuggle up beside me in a most un-relaxing way.

The first time that I remember watching them and realizing their behavioral similarities was about six weeks after Mom had moved in with us. I was helping her get ready for bed, and we went into the bathroom to brush teeth. I handed her the toothbrush, with tooth paste already applied and then started giving basic instructions including reminding her of what she was doing. On my other side was Matthew. I turned to him, loaded his toothbrush, and started to help him brush until he insisted on doing it himself. I stood looking the mirror watching my two charges and saw, perhaps, my first real glimpse of what I was facing.

Accepting our relationship change has not been psychologically easy for me, but acceptance has come. I smile, if not sometimes roll my eyes, when Matthew screams because Grandma has stolen his yogurt or is eating the food off his plate or when Mom is upset and trying to scold Matthew because he’s made a swipe at her food. I don’t, in fact, can’t treat her as I do Matthew, but I certainly have learned to accept and work with the reality that many of her actions reflect the self-centeredness and logic of a toddler. And I love her.

Finding Respite

Finding help so that I get time away, at first, was a tricky issue.  It still can be, in fact.  My first attempt at hiring someone to come into my home to watch my mom did not go well.  I went through a hospice agency and they were just not the right fit.  I had leads on a couple of CNAs that fell through as well.  Finally, I hired someone who would just come and spend time with my mom. She has no training and is not required to do anything like helping with the toilet or giving baths, but she is a sweet, loving woman who comes to spend time with my mom so that I can run errands, go to the park, or just get my morning shower.  As an added bonus, she loves my 3 year old, as well, and she will sometimes watch him, too.  She has been a great addition to our schedule.

For longer term respite, we found a facility that will take "respite patients" into their facility along with their full time patients. I've been very happy with this arrangement; it is what has allowed me to vacation with my family on occasion.  The first time we took my mom there, she was miserable because she thought she was being left forever.  I didn't use the facility again for a year. By the second stay, my mom had declined enough that it didn't really upset her. She just kind of does whatever she's told. If she were capable of processing the thought, I would say she was resigned to the life she has now.  She never seems very happy nor does she seem very sad.  She just exists.

I am not good at taking time for myself, but when I do, I feel the difference that it makes. I am a better mom, a better wife, a better daughter--a better me.Yesterday I used the time to play a game with my youngest and then met my high schooler for lunch and helped him study for a math test.

Besides giving me time, I also feel relief that someone is simply spending time with my mom that is focused on her. I am pulled in so many different directions that I often worry about my mom's quality of life.  This helps me to feel like I haven't just "planted" my mom in a place and left her too long. Yesterday I used the time to play a game with my youngest and then met my high schooler for lunch and helped him study for a math test.

Tough day

Today was tough.  I can analyze. I can observe. I can report. But there is no escaping the emotional wrings that come, some days--some moments--more intense than seem bearable. This morning was that kind of emotional wrench.

I walked into my mom's room just as I do every morning and said: Good Morning, Mom! Ready for a new day?

I got no response; not even a look. I finally got her attention and then had to force her to get up and get dressed. She was barely walking. I practically carried her into the bathroom. She didn't want to get undressed (that's typical). She was constipated and needed assistance with that. By the time I got her back in her chair ready for breakfast, tears were rolling down my cheeks and the banner of thought scrolling through my mind was: Where is my Mother? Why is she like This?

(And in the background was my three year old pulling on me, demanding to be played with.)

There are days when I have to ask "How long can I do this?"

Not Swallowing Food (occasionally)

I have read that this is a symptom that comes in the later stages of Alzheimer's. For my mom, it isn't that she can't swallow. It seems, rather, that she simply forgets that she has food in her mouth that needs to be swallowed. She will stop chewing, pocket the food in her cheek and hold it there; however, when I remind her that she has food in her mouth, she starts chewing again, and generally, she will swallow. The most effective way to remind her is not with words but by putting another spoon full to her mouth. She doesn't take the new food because she realizes there is something in her mouth.  Only a few times has she spit the food back out.

The first time I realized that she was pocketing food in her cheek, I worried. Now, it is just another one of the odd symptoms of the messed up circuitry in her brain.

Wheelchair: Kids loved It; Mom Detested It

As much as my mom detested our suggestions that she might benefit from the occasional use of a wheelchair or a walker, my kids loved having the medical equipment around. The contest for months was who could balance the longest on the back wheels of the wheel chair. My youngest child thought that taking a ride on the walker should be his right. But my mom treated the equipment as a concession to her declining health. We compromised for awhile by taking walks with an empty wheelchair. When her legs got tired, she gladly took respite in the chair.

After one particularly bad seizure, the one that put her in the hospital and then temporarily in a care center, she used the wheelchair often, even around the house. I had her use the wheelchair each week at church simply because her balance was precarious and her energy level unpredictable. After the third week, I was helping her out of the car with the chair waiting for her, and she said, "I am not using that." I put the wheelchair back in the trunk, and she walked into church. Taking medicine and using medical equipment were my mom's sticking points; she hated to be dependent on anything or anyone.

Some of the equipment we found most useful early on were handrails in the bathroom and a raised toilet seat. The walker was never great for us. First my mom refused to use it and then she just lost the mental ability to know how to manipulate it. ie. hold on and move it forward. Shower seat has been great.