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.

Tender Moments

Today I silently stood in my dining room, unnoticed, while observing my sweet nine-year old daughter read a book to her grandma. Anna read the little board book with all the tenderness, patience and expression that one would use with a toddler. She pointed to the pictures and counted the animals. Then she placed the book gently on my mother's lap and took her hand, patted it and gently said, "I love you. Do you know that?" She smiled and kissed her hand then my sweet little girl started to stroke my mom's head and tell her how beautiful she is. I could not ask for a sweeter manifestation of love and tenderness, and it was all done in what Anna believed to be utter anonymity. Tears rolled down my cheeks as I watched the tender exchange between my daughter and my mother. Love freely given--all Anna received in exchange was an occasional smile. When I talked to her about the interaction later, she shyly smiled and replied, "That's what grandma used to do to me."

I have tried to look for the good that can come in this difficult situation and there have been quite a few good things emerge. One of my hopes has been that my children will come out of this experience better people. It hasn't always been easy on them. I have missed events and out of town trips with them because I had to stay home and care for my mom. They have helped me move her and feed her. They have waited as I changed her and dressed her. They have watched her thrash in seizures. They have felt the loss of their grandmother, and they have watched her change into a vacant person. But I believe they are learning patience and compassion. I hope they are learning the joy of service. 

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Today was a moment that I do not want to forget.  I was so pleased with my daughter who has come a long way from the day when she confessed to me that the changes in Grandma scared her. We talked later that day about some of the things she remembers about my mom from before the dementia. Anna reminisced about "grandma play dates" and the pajamas that my mom sewed for her. It is a struggle sometimes to keep the memories alive when the present shadows the past. I'm grateful that my kids have a few memories still of how my mom used to be.

Qualifying for Hospice Care through Medicare

It has been awhile since I posted. Life has continued on and taking care of my mom and my family has just become so routine that I haven't had much to say. That being said, however, daily life is still an adventure.

We finally arrived at the point that we qualified for hospice care paid by medicare. I called the hospice agency when I was convinced that my mom was in her last days. They were so helpful getting things set up and were, quite honestly, a godsend. My mom rebounded ie. didn't pass away, but the team was in place and we set it up so that I would have help getting her bathed and dressed 3 days a week. Most comforting to me was that I finally had a support team for when the end does come. One of my worries has long been having to call the ambulance, who may or may not, listen to our end of life decisions, and then proceed into a hectic end rather than a peaceful passing with people who know and understand the situation.

My mom doesn't recognize anyone as far as I can tell. Sometimes she will give a greeting of recognition but then she gives that same greeting to complete strangers. I wish all the time that I knew what, if anything, is going on her mind.

The largest measure of her decline in the last 4 months has been weight loss. Regardless of regularly eating, she continues to lose weight. She is barely 100 pounds. She is skeletal. That is one of the most difficult things for me to watch because I am in charge of feeding her. I struggle, all the time, asking myself if there isn't more I could do to prevent her from wasting away. The hospice nurses assure me that it is part of the process, but that is one part that is painful for me to watch. (ok--all of them are painful to watch, but not all of them can be linked to something that I am solely in charge of, such as feeding her.) I can be pretty hard on myself when it comes to accepting that I am doing all that I can/should be doing.

Here is a link to the medicare hospice page. http://www.medicare.gov/coverage/hospice-and-respite-care.html

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.