Home Again

We're back from our travels and, while I can't say it was fun or relaxing, it was an experience I will never forget. It was good, as always, to see John's family but my mom's condition has worsened considerably over the past two weeks. She didn't eat or sleep much and the sinus infection she had turned into bronchitis. She is taking a stronger antibiotic and a sleep aid, and her appetite seems to be increasing. We're hopeful things will be back to normal--and I use that term loosely--very soon.

Although we stayed in the same house for about ten days, Mom never could find the bathroom. The family took turns escorting her, and often by the time she reached the bathroom she would forget what she was doing and think someone was trying to lock her in a closet. She was negative and accusatory, roaming the halls and saying she knew we would be leaving her somewhere to die. She suspected everything we offered her had been poisoned, and she constantly wore a look of suspicion and anger on her face. "I know what's in there," she would say as she stared at her food. She even warned the kids not to eat.

As hard as I try to avoid arguing with her, sometimes I get worn down and give in to the frustration. At one point she was begging me to kill her and not five minutes later was refusing to eat. "If you really want to die and you think this food is poisoned then you should want a big bite!" Yikes! That sounded terrible. Thankfully, she forgot the whole thing almost immediately. When I heard John say during another meal, "Liz, you have no idea how frustrating it is to feed someone who thinks you're out to poison them!" I realized how blessed I am to have a husband who is in this with me. Alzheimer's is enough to drive a caretaker mad but Ecclesiastes 4:12 gives us hope. "Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."

The majority of our friends and family think we should put her in a nursing home. We think that would be a mistake at this point. As a well-respected missionary friend recently reminded us, I Timothy 5:4 says, "But if a widow has children or grandchildren, these should learn first of all to put their religion into practice by caring for their own family and so repaying their parents and grandparents, for this is pleasing to God." In short, what kind of missionaries would we be if we ignored our god-given responsibilities? Even with our imperfections, I believe she is still getting the very best care possible. I also believe that what God is teaching my family through this is something that cannot be measured. For example, the fruits of the spirit are being refined in a painful but effective way in each of us. At the end of a challenging day we tell our kids, "Tomorrow is a new day." I have to remind myself when I've blown it with my tongue that "the Lord's compassions never fail. They are new every morning." We trust Him to continue to guide us daily and we refuse to allow this situation to turn us inward, forgetting that we have been called to the great commission.

Jonah's Birthday

One of the reasons we came to Colorado was to celebrate Jonah's eleventh birthday with the family. I made him his favorite--lemon cake--and found out that high altitude baking really is different. Ben helped "decorate" it while I was out of the room.

We asked Jonah what he wanted to do for his special day and he said go to the mall. John and I aren't mall shoppers which is probably why our kids like to go--it's a treat. We went to an enormous mall that has indoor glow-in-the-dark putt putt, a bungee/trampoline bounce, an arcade, and this fun little contraption:

We got my mom a wheelchair because she has been wandering off more and more and because she is shuffling and moving very slowly. She was consumed with the idea that we would leave her and asked me to take her where someone could hear her scream and even yelled out "don't make me do this" when I was helping her in the bathroom. She occasionally asks, "Is this where you're going to kill me?" It will be a small miracle if someone doesn't call the police on us. This disease is very cruel. Sometimes the boys are a bit frightened by her behavior but for the most part they just think it's funny. We try very hard to keep the mood light and maintain respect at the same time. Jonah said he had a great day so it seems to be working.  

Road Trip

John recently submitted an online bid for a rental car that, much to our surprise, was accepted. We arranged for a house sitter, packed up with little notice, and were on our way.

The kids were super excited. Here they are waiting to see which car we would get. 

Jonah and Andy had their own little apartment in the back, and Ben and Mom stopped bickering as soon as the DVDs were started.  

Mom's screen broke almost immediately but she didn't seem to mind. She just sat looking straight ahead while the kids watched movies and John and I listened to music and talked. Every once in a while she would interject something in response to what she thought she heard but had clearly misunderstood. I hoped she could enjoy the ride and the beautiful scenery, which she seemed to--at first.

We drove through Wendy's for lunch and I asked her if she would rather have a salad or a sandwich. She chose a chicken sandwich because she has trouble with utensils. I got hers grilled but when the food was passed out she grimaced at her lunch and wanted John's because it was fried. They traded. Then she took a bite and said it was delicious but would rather have my salad. I traded her but she couldn't eat it because, as I said, she has trouble using a fork. So I tried to get her to use her fingers but she wouldn't. In the end, everyone had plenty to eat but nobody was very happy and we were reminded just how frustrating Alzheimer's can be.

Later we were munching on snacks and I gave her some crackers. She ate about three then told us, in a panic, she shouldn't have because "they're thick and they'll keep me up all night". She repeated herself about every twenty minutes as if it were the first time she'd said it until I held up the box in frustration to show her that they are called Wheat Thins and can't possibly be too thick for anything and that crackers don't generally affect a person's sleep anyway. She acted like she understood but picked back up where she'd left off about twenty minutes later. It makes for a funny story and God knows we have to laugh sometimes or we'll cry, but I was close to tears by the time we stopped for the night.  

I was grateful that John had the foresight to book a hotel room halfway in Wichita, Kansas so we could get a break from the car. The nighttime routine was another stressor. John took the boys to the pool while I got Mom ready for bed. She kept saying "This is the wrong place" and I was beginning to question the wisdom of taking her away from home. I slept in her room with her and she was very nervous that she wouldn't be able to remember my name if she needed me in the middle of the night. She was up most of the time pacing and going in and out of the bathroom. By four o'clock I gave up and turned on the news.

The next morning she had the idea we were going to leave her somewhere. She was absolutely miserable and looked disgusted with everything and everybody, which is why this photo is so remarkable:

When I told her I would like to take her picture, she gave me one of the only smiles I've seen since we left Texas. (And, yes, Ben is wearing a life jacket to breakfast.)

Andy loves few things more than a good breakfast buffet, and we let Jonah have a cup of coffee so they were loving life. The kids have been wonderful through the transition and are treating their grandmother very well. I am proud of them all.

Andy's my budding photographer and he got a picture of us which proves that what hasn't killed us has made us stronger.

The car ride the second day was about the same and we were thankful that it wasn't worse. Mom seemed happy to see John's family but was sure we planned to leave her with them. It seems she'll only believe that she's going home when we take her with us next week.

John's Birthday and Then Some

John just turned 43. I don't know if I was supposed to divulge that, but I think he looks pretty good and want to share with you my thanksgiving for such a wonderful husband and father. When Mom heard it was his birthday she was upset that she couldn't do anything for him, so I suggested she take him to lunch. She offered to take us all to his favorite restaurant, which just so happens to be right here in Fort Worth. I secretly enjoyed the day as if it were my own celebration because she has forgotten my birthday for the last three years. (Yes, this disease has been brewing for a while.) 

We had a good day, all things considered--we ditched homeschool and had a lazy morning then enjoyed our favorite foods to excess while Mom seemed pretty content and even fastened her own seat belt on the way to the restaurant.

The very next day, however, was a scheduled doctor's appointment and that didn't go so well. They had us waiting for an hour in the waiting room when Mom got upset and started to pace, insisting the people on the couch move so she could lie down. When she started to panic and talk very loudly to herself, I told the receptionist we would have to reschedule the appointment. As we were walking out, she grabbed the door saying we couldn't leave "the hospital" without finding out what was wrong with her. It was stressful, to say the least but she was fine when we got into the car.

The day after that was much better. The kids played outside while Mom sat in a chair watching me finish building the chicken coop I started weeks ago. She sat with her cat asleep on her lap and smiled most of the time. I thought we were on the mend only to experience our worst day yet just yesterday. It was the first day I had to help her with everything from using the bathroom to eating her food. She couldn't seem to do anything for herself. I expect that she may rally a little in some of those areas--she has before--but she is steadily declining and I won't be surprised if these are the last photos you see of us at a restaurant. Although, we do have a road trip scheduled soon and we could use a prayer from each of you that it won't be a disaster but a much-needed family vacation. Either way, I'll let you know how it goes.

By-the-way, if you would like to know more about Alzheimer's, the best resource I have found is a book called The 36-Hour Day by Mace and Rabins. It has proven to be surprisingly informative and accurate.

How's Your Mom?

My mom is the little girl in the pictures. It struck me as I was looking at them that God knew on the day each photo was taken what her future would hold. What a great honor it is to have been chosen to share the gospel with her and to see her baptized in June 2009, and now to be taking care of her towards the end of her life.

Several people have asked me lately how she is. Until now I've been very careful not to share anything that would get back to her and humiliate her. Unfortunately, that's no longer a concern because her Alzheimer's has progressed to the point that she not only can't read my blog, but she also has a very tough time holding a conversation. For instance, we met a neighbor during a walk a couple of days ago who told us he restores old tractors. When he pointed to a '38 John Deer he recently acquired, my mom proudly told him that she owns a '38 Chevy. (She doesn't.)  Another man recently told us about losing his business to which my mother replied, "Oh, that's good!" I find myself explaining her condition to strangers so they won't think she's crazy or just plain rude.

Being in public with mom is stressful in that we never know what to expect. For example, her depth perception is skewed so she brings her foot up to knee level to step off of a curb and flinches if someone passes within a few feet of her at the grocery store, thinking that they'll run into her. Sometimes she thinks she recognizes a person and speaks to them as if they're old friends or, if someone actually does recognize her, she obviously has no idea who they are.

The bulk of the challenges come from our daily routine at home though. Living with mom is, I suspect, a bit like adopting a child with special needs. Her speech has regressed so that she pluralizes words and says things like "ices", "toilet papers", and "cat foods". When something is empty she says it's "dead" and she calls sweetener "softener". She has a hard time finding the right word in general. She calls me mom pretty much all the time now and makes hand gestures to get her point across, like grabbing at her zipper to say she needs a bathroom. I tell her when it's time for a shower and show her how to wash her face. She still brushes her own teeth and even flosses as long as I cut the floss for her. She also often has trouble getting a fork to her mouth or stepping into her pants. I prepare all of her food and usually at least help her get herself dressed. Last week at church I looked down to see her wearing two different shoes--both right foot. She wants to be helpful so I include her in rinsing the dishes and folding towels. She sits in a chair while I do yard work and is happy to get me a cup of water, provided I give her the cup. (She can't find those on her own.)

Mom gets frustrated with how "fast" and "loud" the kids are and she often gets angry with me for something completely irrational, like when I tell her not to eat something she just picked up off the floor or I ask her to wash her hands after she's used a public restroom. She talks to herself, and she follows me around most of the time. I have to remind her to talk to the kids and hug them once in a while. They treat her well but obviously have a hard time adapting to her becoming less capable in some ways than even the youngest, with whom she often argues. We are all struggling to adapt to our new lives together. Though I would selfishly like much more support from family and friends, I am thankful for the support we are getting and know that the lonely times give us a stronger connection to God and make us more useful to him. So we're thankful for the opportunity we find ourselves in and praise God for his goodness and mercy in finding us worthy for such a task.

Transition

When I'm talking to someone about moving forward in life, I always give the same counsel: start where you are and with what you have. I'm taking my own advice today. Because of the amount of time that has passed and the enormous amount of change that has taken place since my last entry, I haven't been sure how to proceed with my updates.

Yesterday I uploaded the photos I've taken since our visit to Colorado, and I'm going to let those dictate the parts of our story I share with you since my last post. In case you don't already know, we sold our house in Florida to move to Texas and take care of my mother who has Alzheimer's. She was living with her boyfriend of over twenty years, and he asked us to come take over. So, we moved into a house she built in the town where I grew up and brought her back from her boyfriend's place over an hour away. To say it has been challenging is an understatement but God is good and we know we are doing the right thing. 

Without further ado, here is a random sampling of some goings on with our family:

This actually happened while we were still in Colorado, but it was the night before we left and we dealt with it for weeks after we arrived in Texas. Jonah broke his finger on a daring scooter ride:

Some very kind people from our sponsoring church came all the way to Florida while we were in Colorado and drove a moving van full of our furniture to Texas. They had everything here in the garage when we arrived. Because they also pulled up all the nasty carpet for us, the only room that was livable for a while was the dining room. We slept on mattresses in there until the new flooring was installed. It was a little like camping out, including the dangers of the forest, i.e., carpet tacks. Ben recently asked me what I ever did with all those "heart attacks" that were on the floor when we moved in.

We went out and bought some baby chickens, mostly because we didn't know what to do with ourselves and it seemed like a good idea. It actually turned out to be a great idea because those chicks have kept the boys very occupied. 

Again, some wonderful folks from our sponsoring church went with us to where my mom was living to move her stuff out. Now it's all here and a large part of what we have been doing is sorting through it all.

John took this picture of me and the kids with Helen, the woman who told John and me the gospel about seventeen years ago. She was living in a nursing home here in town. I was happy that the kids got to spend some time with her because she recently passed away. She asked John to speak at her funeral. It was a huge honor and we all miss her so much. 

We joined a local gym which turned out to be a local mission effort. A group from Fort Worth sold their church building to come out here to the sticks and start a community center. They've gotten it up and running and have been, by their own accounts, praying for some assistance. We watched their minister baptize this man in the gym pool after a Sunday service. Because the contract with our sponsoring church is up in January, we feel God is opening doors for us to partner with this fledgling church.

John's mom came for a surprise visit, which was far too short. Here we all are with the grandmas in the back yard.

I would like to say the adjustment phase of this move is coming to a close but it is quickly becoming apparent that, with the progression of Alzheimer's, every day is an adjustment. The kids are doing remarkably well and our prospects for employment and continuing mission work are looking good. God seems to be melding all of our experiences into something useful right here in, of all places, my hometown. For those of you who don't think yours is a mission field, stay tuned. I think you'll be encouraged. 

Joanna's Wedding

We've been in Colorado for about two weeks now. John has a lot of family here and we've had a great time visiting with them all. I have many fun pictures I could share with you but this is the highlight of our trip:

John married his niece Joanna to her boyfriend Dan. The most exciting thing is that during our talks with the couple before they tied the knot, they both decided to recommit their lives to Christ. They even announced it during the ceremony. It was a beautiful wedding and my first wedding photography assignment. You can see the pictures on my facebook page.