Oh, Fleeting Sleep

I have not ever been a single mother, but at times I wonder if this situation has given me a glimpse of what that would be like. I live with someone who is totally dependent. Not always able to discern right from wrong. Needs help showering, eating, dressing, and turning the television on. Needs reminding, encouraging and refocusing often. Dealing with someone who needs to be entertained, but also can only tolerate a certain amount of activity or stimulation. Learning to put someone else’s basic needs far above my own because of the unconditional love. Patience, patience, patience. I know how important it is to invest time. Having bedtime rituals. Being able to survive on three hours of disrupted sleep and going to work for 12 hours. Worrying, while I am at work about who is taking care of my charge. Worrying how much longer I am going to have to be in this situation. Worrying how much longer I am going to get this special moment in time. Having specific feeding times. Trying to take care of someone who is often unable to communicate her own needs and wants. Cleaning the house, doing laundry, dishes, bills, organizing “play dates”.

I remember the movie “The Curious Case of Benjamin Button”. How he was born old, and through his life aged in reverse.

As a nurse I know that dignity is always lost when one is sick and dying. This seems to be so hard for many patients I have taken care of. They get to a point where taking a shower can be the most exhausting part of the day. Where having a bowel movement becomes a public event. When you can no longer walk down the hall without assistance. But I do know that some are able to go through this process with more grace than others. And I do have to say, unabashedly biased, that my mother is the picture of poised grace. Through the past 13+ months she has dealt with the hand she has been given. Her smile gives away her true feelings - joy for the day, and the blessings in the midst of the storm. We ran into an old friend today who I have not seen in years. One of the first things he commented on was Mom’s smile. How happy she is. Then he recalled that she has always been a happy person. I’m not sure if this is totally true, but as far back as I can remember I have lived in a loving, supportive, peaceful, and happy home. This I know is a direct result of my parents’ faith and relationship with the Lord and the love that overflowed from that.

As I have been writing this, I have heard Mom get out of bed to suction her mouth. She has brought me special cream to put behind her ears where her medicated patches irritate her skin. And now she has climbed into my bed and her head is resting on my shoulder. Hearing her steady breathing and her Mom smell are a perfect end to my busy day.

Although “Benjamin’s” body aged in reverse in a fictional story, I do not think that it is a totally unfounded concept. It is truly a circle of life. And I know that I am so blessed to travel part of it with my Mom.

OK.

Ok. I think this is the third time that I have tried to sit down and blog. I am on an airplane and have 1 ½ hours so maybe this captivity will help keep me focused. I think that it is getting harder to share because the journey is getting harder. It is getting more difficult to leave Mom. It is becoming more consuming to be with her. Kind of tough to work and come home and work. Don’t want to take care of her – don’t want her to be sick but also know beyond a shadow that there is no other place I would rather be. Wondering what the next year of my life is going to look like. Afraid. Enjoying my family. Being with people always. So many areas of life can be so bittersweet. Unpredictable. Totally beyond understanding. Wanting answers, wanting healing, wanting peace. Want to be happy without having something else nagging at my shoulder. Wanting honesty, but wondering if I can really handle it. Wanting understanding and ignorance at the same time. Wandering through thoughts and feelings.

Ok. To explain where we are. Mom has been enrolled in hospice for about 1 ½ months now. I am not totally impressed and convinced that this is where we need to be right now, but I am trying to adapt. Jer and I have always agreed that we wish we had enrolled Dad into hospice earlier. But his issues were more consumed with pain. Hospice is so good at dealing with pain. Thankfully, Mom is not in pain. Well, only occasionally at the insertion site of her PEG (feeding tube), which seems to be taken care of with liquid ibuprofen. I am so glad that I don’t have to give her anything more potent than that, for fear that it would suppress her respiratory function. The biggest issue remains to be the incredible amount of saliva she is able to produce. I think we have gotten to the point that nothing is making it down to her stomach through her esophagus. It either goes down her trachea to her lungs or, hopefully, comes out her mouth. We have three different medications that we are using to help minimize and dry up some of these secretions. One is in patches behind both of her ears. The problem is that the skin is becoming very excoriated and bothersome to Mom. The second is a red syrup that goes under her tongue, only 1cc, but most of it is ending up on her shirt, bathrobe, or the carpet. The third is a liquid that we only put two drops under her tongue every 4 hours. It totally tastes horrible. I have checked. Not fair that the only thing Mom gets to taste is so unsatisfying.

Ok. The second and third issues are interrelated. She continues to lose weight even after we started using the feeding tube. So about a week ago we increased the number of cans of food she is receiving daily. Six cans a day instead of five. More calories is good, but it is not normal food. And I have always expected and dreaded that one of the major side effects of having a diet solely of tube feeding is the diarrhea that can follow. As all nurses know tube feeding =’s liquid stool. ALS affects all muscles and sphincters and FTD is the cognitive functioning. All these things against us are not a good combination. But hopefully we will maintain her weight and manage the side effects.

Real Life

So, I first started this journal towards the end of a three week break I had from work. I had done all the errands, cleaning, new carpet and chores I could handle. I had the time and motivation. Now it seems as though life is back to normal. Busy. I think that no matter the situation or stage we find ourselves in, we can always be consumed by busyness. It does take discipline and determination to find time to do things that seem so important, and yet are so easily procrastinated.

I have been so encouraged by people who want to know how Mom is and what is going on in our lives, and yet, at times it is so hard to sit down and write.

An update on what we have been trying to figure out with Mom. She is now enrolled in hospice, they have been helpful in some areas and very frustrating in others. We are trying to figure out the best medications to help Mom with her excessive salivation. This morning, about 3:30, I awoke to Mom's coughing and gagging. I sat with her for about an hour trying to cough and suction as much as we could. I now have the suction machine set up in the bathroom and Mom is becoming more confident about using it herself. She wears patches behind her ears that are supposed to help with this issue also. Unfortunately, they are irritating her skin quite a bit. I know it bothers her and I often have to remind her not to pick at them. It is becoming increasingly hard for her to endure any long outings. She tires of things quickly and her energy depletes quickly. Communication is also becoming harder. The other day I was only getting "yes" to every question I asked. Even "Are you an alligator?" and "Do you want a snow cone?" Not really helpful, but I do know that she still has a sense of humor.

OK, maybe some good things. We read together every night, currently, Charlotte's Web. In the past week she has been to the botanical gardens, the IMAX theater, shopping, walking in the mountains, watering her garden, and has watched lots and lots of movies. She has such dear friends who enjoy spending time with her and caring for her. We are both so blessed by this. Jeremy and I also did some cleaning in the garage and found, among many other treasures - Mom's accordion! Yes, she did play the accordion, before her cheerleading days. And she has loved showing it to her friends this week.

My life - Monday, Jeremy and Naomi threw a surprise birthday party for me. I had no idea. Showed up in my sweats. Very fun, I totally felt like a princess - in my sweats. I got some cleaning done and then, of course, when I have about 6 days off, I get sick. I tried hard to stay away from Mom as much as I could, feeding was difficult. So I am hoping that she does not get sick, because with her weak gag and cough reflex it would hit her much harder than it hit me and it was no fun for me.

Jeremy and Naomi celebrated their first wedding anniversary and this weekend get to go on a little beach vacation - no hurricanes please.

Today has been a productive and restful day, and I got to take care of my beautiful mother.

Ballooning

12 hours of work yesterday and I get a phone call from Mom's cousin. "Do you and your Mom want to go up in a hot air balloon in the morning?" How could I say no. I have been wanting to go up for a long time, and have tried many times but wind is a little difficult to predict. So we made the plan. I got home from work and told Mom and she was very excited too. So we got everything prepared so we would be ready before the sun was even up. Finally, to bed hoping that the weather was going to cooperate.

The plan was we were going to be picked up at 5:45 this morning and head out to the launch site. I was sound asleep and all of the sudden the light was on in my room. Through squinty eyes I could see that Mom was ready to go. All dressed, glasses on, shoes on, bed made - she was ready. I rolled over and looked at the clock 3:48am. My alarm was not set until 4:45am. I guess Mom was excited for our adventure. I know that she must have even gotten up much earlier because it usually takes her about 40 minutes to get dressed. So I had her take her shoes off, get in my bed and sleep for another hour. But then she was ready to go. We got her out of bed about 5:30, gave her a can of food and were off.

We got to the launch site about 7:30 and inflated the balloon. We have seen this done hundreds of times, since the International Balloon Fiesta is here in the Land of Enchantment. But then came the exciting part. The gondola is up and the pilot looks at Mom and me and says, "Hop in!" Yeah! It really did happen, no more disappointing attempts. One more ignition of the burner and we are airborne!

Quiet all around, jack rabbits scampering below and my beautiful Mother smiling as we float over the earth. What more could I ask for to start the celebration of my birthday! Perfect.

Landing can be a little bit bumpy sometimes, but the wind was good and we only had one bump. We continued to crew for a little while, then we went back to the take off point and had a champagne toast. Our maiden flight was a success.

I finally got a very tired Mom home by about 11:00am. Fed her and we watched a movie. I still don't think she has recovered. It is becoming increasingly difficult to schedule more than one activity in the day. She gets very weak and very tired quite quickly. But I am so thankful that she does still like to do fun activities and we have people around that spoil us. Thank you all.

Friends

I am continually amazed by the responses I have received since I have started this written expression of our journey. So many people have told me that they have read it and passed it along. Friends that I was close to in childhood, in high school, at summer camps, church, nursing school, California friends, patients I have taken care of and their families, first and second cousins and new friends have responded. I have received emails of encouragement that I didn't even know I needed. Thank you.

I am also so amazed by the response from many people I don't even really know, these being Mom's dear friends. I knew she was out-going and considerate, generous, loving, thoughtful, fun, honest, encouraging, inspiring, patient, hard working and humble. Now I am seeing the evidence of all of these combined qualities. The other day one of Mom's fellow teaching friends told me about a bouquet of gladiolas Mom had given her. One of Dad's co-workers was sitting behind Mom and me at church a couple of Sundays ago; he introduced himself and told me how instrumental Dad had been in his life and his wife is now in Mom's Bible study. Last week I heard for the first time how Dad and Mom were investing in and enjoying a precious friendship the night before Dad died. More than one friend who knew Mom in high school told me she has always been their role model. Friends Mom had in Young Life before I was born are as close as ever. A friend Mom was a cheerleader with in high school made it possible for Mom and me to go on an Alaskan cruise last fall (will share more details about this one later). And we have a very special eclectic group who have become part of our everyday lives. These friends have learned how to help Mom with her tube feeding, water her garden, and most importantly spend time with a precious friend. The picture of true friendship - always there, unconditional love.

I was talking with my best friend last night and we came to the conclusion that one very important reason we have friends is to walk together. I am so thankful that she is at a point in her life where she can support and love Mom and me. We both came to the next conclusion that at some point I will get to walk with her when she is having trouble standing strong.

I know that the Lord will only give us what we can handle - but of course it is not by ourselves we handle. We need Him and those He places in our lives to work though with His love. Sometimes it is so hard for me to trust that He is really loving. But I am so glad that I have physical love to appreciate too. Thank you all.