It was three years ago that my siblings and I were beginning to have the conversation about how long Mom could remain on her own. In three months, we will have the third anniversary of her moving into our home. In some ways it has gone quickly--everything seems to go quickly anymore. My youngest was not quite two. My oldest didn't even have a driver's license. Now my oldest has finished his first year of college, and my youngest is getting ready for preschool.

As the children have changed so has my mom.

I've felt that we have handled things pretty well and even have fallen into a pretty workable routine. I know that the situation hasn't been easy on my husband. I am realizing more and more, however, the mental toll that it has taken on him and the stress that has been placed on our marriage.

Be careful is my warning. Be aware of even the subtle changes and stresses that being a full time caregiver has on everyone in the family. I try not to require very much from others in my family as far as the daily care of my mom, but just losing part of me to her and losing a great deal of spontaneity in my life has been a trial, especially for my husband.

Be Careful.

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. 

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.

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?"