I Spoke too Soon

First, an explanation, I measure all of Daughter’s food. Because of her diabetes, I need to know how many grams of carbohydrate in everything she eats so I can calculate how much insulin she needs to cover the carbs. When I cook supper, I generally cook two servings. Leftovers are rare around here, because it makes figuring nutrition information harder, and it is also too tempting for her to go in and help herself to more later. When we’re in restaurants, we have a book that provides us information on much of the food. For food not listed, I guess. Sometimes I do really well, and other times she ends up with a blood sugar that is too high or too low.

I mentioned how pleased I was when she actually followed directions and added hot water to the dehydrated potatoes before she tried to cook them this time. Then, I discovered she followed the directions so completely that she had added water to the carton, meaning that rather than making 2 servings, she’d made well over 30. I quickly put the potatoes in the refrigerator, and told Daughter that she’s going to eat lots of potatoes the next few days. Of course, I have no idea what a serving size is or how many carbs are in the food I’m serving her now, as the nutrition information is for the potatoes while they’re still dehydrated.

Wednesday, I created a casserole with the potatoes and the leftover chicken and grilled onions and green pepper from the fajitas Monday night. I also threw in some salsa, reduced fat sour cream, and cheese. Daughter loved it. I’m not sure that’s the lesson I wanted her to learn. Mess up the potatoes, and Mom creates delicious new meals. I did okay on calculating insulin—she was on the high end of her target range at bedtime.

The good news in all of this was when I asked her about what she’d done with the potatoes, she immediately owned up to what she’d done, and when I explained that it was a problem, she apologized and told me she hadn’t known, which I think was accurate. It’s another sign of her mental deficits. Most people would realize that to make breakfast for 2, you don’t need more than 30 servings of potatoes. Poor Daughter doesn’t think that way. She is very literal. The first time she used the potatoes I told her to read the directions, not follow them. So, she read the directions, she didn’t follow them. She learned from that mistake, and this time she followed them—even though they were designed for use in a restaurant or institution.

But when I explained what she’d done wrong, she was appropriately apologetic and willing to accept my explanation. There was a time when I carefully considered whether or not to correct her, because I knew any correction would likely lead to a rage. This time she apologized, said she didn’t know, and accepted my explanation without protest. I’ll keep that in mind as I try to figure out creative ways to make use of the rest of the potatoes.

Peace Offering

As I lay in bed Tuesday morning, waiting for the alarm to go off, I thought I smelled something. I pondered whether it was the remnants of the fajitas I’d made Monday night. As I’d cooked the chicken for the fajitas outside on the grill, that didn’t seem likely. I lifted my head and looked out in the hall. There weren’t any lights on, so maybe I was just imagining things. But as the smell grew, I knew it wasn’t fajitas and I wasn’t imagining things.

With some fear and trepidation, I headed downstairs. Daughter was in the kitchen, beaming. In front of her were two plates with eggs scrambled with potatoes and cheese and raisin toast. When she saw me, she handed me something to drink. “Here, you’re going to need this. I wanted to be like you, and I put season salt on the potatoes, but I think I used a bit too much.”

Resigning myself to a big breakfast, I took my plate to the table. The eggs were, indeed, salty. But at least they were still warm, as was the toast. She had even soaked the dehydrated potatoes in hot water before cooking them, as per the directions. This was major progress. The last time she’d used the dehydrated potatoes, she hadn’t bothered to rehydrate them. When I saw the resulting mess, I’d asked if she’d followed the package directions. “You told me to read them; you didn’t say I had to follow them!”

This breakfast was her peace offering for her behavior the previous evening, when she’d ranted and raved about her boyfriend. It was the first time I’d eaten one of these peace offerings when everything was still warm. She has problems juggling multiple projects in the kitchen, so her ability to serve warm eggs and toast was major progress.

The eggs were salty, had a bit too much cheese, but I ate them and was grateful. My body was not so grateful, though. By evening my legs were so swollen that the skin was tight and uncomfortable. In this heat, it will probably take a week of low sodium meals before my diuretic manages to get the excess fluid off. It will come off, though, and Daughter was very proud of her accomplishment. I thanked Daughter for making breakfast for me. She went on to have a very good day.

Another Step

Daughter has been with Boyfriend now for three weeks. This is the longest she has been able to maintain a relationship with a male. She tends to decide the guy is abusive and panic; a remnant from the abuse she suffered in her birth family. I talked to her therapist this morning about whether it was time to grant them more freedom. We decided that I would know when the time is right, and that as long as she continues to come and check in with me several times over the course of a 90 minute date, she still needs me close at hand setting clear boundaries.

Boyfriend thinks they should be able to have dates more often than once a week. They really don’t see that much of each other at the workshop, softball practice, and games, so they need more time together. At least, that’s their argument. Daughter is both excited and terrified by this request for more time. As I listened to her go between insisting they needed more time together and thinking that she should just break up with him now, I realized just how terrified she is.

I told her that I would consider their request on a case by case basis. One minute that was fine and fair, the next I was being too hard on them, and then she wasn’t sure she could handle the extra time. It is interesting to watch her struggle with this. There was a time when the entire struggle would have been internal, and I would have had to guess at what was going on and why she was acting out. Now, though, she talks about it and I can literally see her struggle with this. She storms off ranting, and then quickly comes back apologizing. She wants to quit and her life sucks, and then she’s asking if they can go to dinner and a movie.

It’s exhausting to watch, and it must be even harder to live. I feel sorry for Boyfriend, because I’m sure at some point he’ll be on the receiving end of some of this, and he’ll have no idea what prompted it or what he did wrong. He won’t have done anything wrong, of course. It was her birth family who did things that were terribly wrong to a toddler over 18 years ago.

The thing that has always impressed me about Daughter, though, is her refusal to give up. She will announce she can’t do something and storm off, but she is quickly back determined to try again. I admire her courage and determination. I don’t know how long this particular relationship will last. I do know, though, that it is another step on her journey of healing.

The Cat and the Kitten

We have two cats. Cat appeared on our door step over 11 years ago. It was a cold winter day, and I heard a cat crying. I opened the door and looked outside, and there, sitting by the picnic table on the porch, was a little kitten. I asked him what he was doing, and he came running through the open door. We’d been chosen. Cat is a very affectionate neutered male, and other than some hairballs, is very easy and pleasant. He has mellowed with age, though he still likes playing through the spindles on the stairs when we go up or down.

Then there is Kitten. Kitten was Daughter’s graduation present. Cat and I weren’t thrilled. Kitten likes to wrestle with Cat. She’s been known to push him aside to get to the food first. There are times when she won’t share the cat bed in the window. She’s also young, energetic, and very curious. I don’t know how many times she’s gone exploring in the basement, which is behind a door that is generally closed. I have learned to ignore her escapes into the basement. She will come crying at the door at some point, and eventually I will let her out, though I don’t tend to be in a hurry about it.

As I was waking up on Sunday morning, I was aware of Cat sleeping contentedly at my feet. As I began to stir, he stayed still. (Kitten sees any movement as an invitation to attack and bite your feet.) Finally, I took off my cpap head gear and reached over and turned off the machine. Cat immediately came up and stood by my side, seeking to have his ears scratched. I complied, trying to figure out which of us had been trained—Cat, to wait until I was moving, or me, to scratch behind his ears. As I stood and headed for the bathroom, Cat trotted ahead of me, looking back once to make sure I was following. Once I entered the bathroom, he looked up at the counter. He wanted the water turned on to a slow drip. I complied.

I became aware of a meowing from somewhere, and realized that Kitten had not appeared to disrupt the quiet companionship that Cat and I were enjoying. Kitten had obviously gotten herself locked in somewhere. I opened the guest room door. Nothing. I opened Daughter’s closet door. No Kitten. I came downstairs and opened the basement door. Nothing. I realized that the noise was louder upstairs. I woke up Daughter and told her that Kitten had gotten herself in trouble again.

Daughter got out of bed and took up the search. I tried to help her figure out where she might be. I asked Daughter if she’d been in the attic on Saturday, but she hadn’t. Finally, she opened the linen cupboard. Our house is over 100 years old, and we have this beautiful old linen cupboard with two huge drawers on the bottom and shelves that go to the ceiling on top. The shelves are flush with the door, and somehow when Daughter had it open to get clean sheets for her bed, Kitten had jumped up into the cupboard. She’d been there for over 16 hours, trapped on one shelf. Today I’ll have to figure out which shelf is now full of cat hair.

Once freed, Kitten made a beeline to the kitchen for her food and water, and then literally bounced off the walls downstairs for a while. She had a wrestling match with the runner in the hall, chased a toy mouse, and was so rambunctious that Cat vanished to avoid being attacked by her. Once she had some of her energy out, she came in and perched herself on my desk in the study. She studied the revolving ceiling fan, trying to figure out how to attack it. Fortunately, she decided against it.

Fall Out

I could have predicted it. I should have predicted it. After her success of the week and her picnic with her buddies at the park. Daughter had a bad day. She slept until noon, and then was argumentative and on edge until bedtime. She was furious about having to clean her bedroom. She was into extra food, she was yelling and cussing at me, and at one point she stormed out of the house.

It was mild, really, in comparison to other times, but there was still the acting out. Success scares Daughter. We have had the discussion many times. She recognizes she’s happier and has more freedom when she is being responsible, but she still is terrified. She doesn’t know how to handle success. I think it must be like the wobbly, exhilerating, fearful feeling of riding a bike without training wheels for the first time. I think, also, that there is the fear that if she becomes responsible she will no longer need me and I will kick her out.

I basically ignored it yesterday. Her yelling and cursing were mild compared to what it has been in the past. Her departure from the house was relatively brief. I stayed calm and didn’t react. By bedtime she was down in my study apologizing and discussing her concerns and fears about Boyfriend. She’s approaching 3 weeks with him—the longest she has ever had a boyfriend.

This morning when I woke her up, she got up with no problem, and put on Christian music as she dressed and made her bed (she hates making her bed). She was happy and cooperative. The fall out is over, and hopefully she’s ready to have another good week. Maybe she can make it longer this time before the fall out. Maybe the fall out will last even less time next time. I celebrate the fact that the good stretches are growing, and the bad stretches are fewer and shorter. Progress is being made.

Special Needs Friends

Over the years one of the challenges we have faced is dealing with Daughter's friends. Because she is special needs, most of her friends are special needs. Even more challenging, some of their parents are special needs. When we had her graduation open house, one of her friends showed up with her entire family in tow and presented Daughter with a kitten as a graduation gift. A kitten the vet later estimated was 3 weeks old. I did not want a kitten. We had a cat. One cat was enough. I especially didn't want a long haired kitten.

I supposed I could have politely vetoed the gift, but then I would have been faced with a very unhappy Daughter, which would not have made for a very pleasant open house. My siblings thought it was hilarious, and kept telling Daughter to make sure she gave the kitten to me so I could bond with her. It's been over 2 years now, and the kitten is still here. The cat and I have adjusted, at least to some degree. Kitten is still obnoxious, and sheds nonstop. She hates being brushed. What kind of parent doesn't realize that it isn't appropriate to separate a 3 week old kitten from her mother, or give a pet as a gift without first checking with the parent of the recipient?

Or there is the parent who accused Daughter of harrassing her son, even after I produced records showing her son initiated the majority of the calls. She recently found her son with another young woman, and told the young woman to stay away from her son. This weekend her son is taking advantage of his mother's absence to host this young woman at home. I'm sure, though, that even if she finds out she will still see her son as the innocent victim of these female predators.

Most recently we experienced the challenges of special needs friends with the workshop friends Daughter invited to a picnic prior to the concert in the park. We didn't know if there would be 2 or 6 of them show up. Plans were changed repeatedly, including by Daughter. When she found out the friends she most wanted to attend weren't coming, she tried to cancel the picnic, leaving one woman in tears. I informed her that she wasn't being fair to the friends who had committed to coming, and that she would have the picnic.

Three friends came, including Boyfriend, who had insisted he wouldn't be able to attend for some mysterious reason. I made them sandwiches, and then retreated to a lawn chair Daughter had helpfully set up for me far from their picnic table. Her friends were very appreciative. I don't think they have those kinds of experiences with friends very often.

Providing Daughter with normal young adult experiences is a challenge, and figuring out how much freedom to provide is even harder. It is a constant balancing act. As Daughter tells people regularly, her safety is my top priority. Finding the balance of safety and freedom is an ongoing challenge. Hopefully I'm providing enough of both.

Dementia Reflections

One of our members (E) had moved to be near her son several years ago. She just moved back to a memory care unit in Town, and so I went to visit her. She greeted me warmly, and I introduced myself to her, figuring she probably wouldn’t remember me. She said it looked like a pretty day, and asked if it was warm outside. I assured her it was. She asked me where I came from, and I told her. She said, “I can’t quite place you. Who are you?” I introduced myself. She asked where I came from. She said it looked like it was a pretty day outside, and asked if it was warm. She observed that the wind was blowing the corn she could see through the window. She said, “I can’t quite place you. Who are you?” I introduced myself. She asked where I came from. She told me they were taking good care of her. She said it looked like a pretty day, and asked if it was warm outside.

After having the same conversation (with minor variations) 5 or 6 times, I took my leave of her, with the promise to be back next week. I gave her my business card, so she could remember I’d been there. As I left to go to Big City to visit a member in the hospital, I found myself trying to figure out which was more frustrating, trying to visit E, or Mom. E can talk, but we had the same conversation repeatedly during my visit. Mom is pretty much nonverbal. She can occasionally answer a question in a way that makes sense. The other day Dad was desperately trying to communicate with her, as it seemed something was bothering her. They both were becoming increasingly frustrated. Finally he asked, “Do you want to take a nap?” She turned to face him and said, “Yes!” She seemed to be wondering why it took him so long to figure it out.

I think with E it is probably easier to convince yourself you’re communicating with her. She probably is better able to communicate if she is in pain or in need of something. When her son reported that they were bringing her back here, he said that she forgot his visits as soon as he was out the door. At least Mom can’t berate us for not visiting frequently enough.

I ran into the daughter-in-law of a member after I visited with E. She had been visiting her Mom. She asked about my parents. We talked about how hard it is. Then she raised the fear that overshadows everything, “I wonder what we’ll be like.”

I read another book this week. After almost a year without reading a book, I’ve now read 2 in the last week. For now, at least, I feel like I’m holding dementia at bay.

Birth Mom

I need to begin thinking about the letter I will send Birth Mom this year. After the county totally messed up the termination case, the judge was going to leave Daughter in county custody with the suggestion of considering setting up a guardianship. Birth Mom finally realized she would not be getting Daughter back, and agreed to voluntarily relinquish her. I promised I’d send her annual updates and allow contact once Daughter was an adult.

She turned 18 her junior year, so I told her she had to wait until she had graduated from high school. Graduation was very hard on her (she doesn’t deal well with change), so it was a year before she expressed interest in contact. Last June she requested contact. Her therapist and I discussed it, and couldn’t come up with a reason to deny her contact. To say it was a disaster would be an understatement.

Daughter was surprised at how young (and immature) Birth Mom sounded. “She didn’t sound like a 58 year old woman.” I patiently explained that that was part of the reason Daughter had been removed from that home. Birth Mom hadn’t been able to function as an adult woman and keep Daughter safe. Within a few days of their first phone conversation in 12 years, Daughter was psychotic and needed to be hospitalized. That was the first of 3 hospitalizations last summer.
During the third hospitalization, the issue of ongoing contact was raised. Psychiatrist told Daughter that she needed to go a year without hearing voices before we even considered more contact. At her last visit, it came up again, and Psychiatrist said we’d talk about it at her September appointment. I’m grateful that the Psychiatrist has set the rules and I’m off the hook on this one.

I think for Daughter, Birth Mom is like a tourist destination. She’s a site to visit and explore, and then her curiosity will be satisfied and she won’t need to visit again. Unfortunately, that’s not the case, as Daughter discovered last year. Birth Mom is a complex individual and she can’t be explored and abandoned, she wants a relationship, and to pretend that the family is still whole.

In their conversation, she shared with Daughter her worries about Birth Brothers. Birth Brothers were removed from the home around the time Daughter was, and placed in separate homes. There was no consideration to placing them together, as there had been serious violence and sexual acting out between all three siblings, Daughter was only 2 when she was removed, and had experienced sexual abuse. One Brother is obese and has serious health issues, and the other was serving in Iraq. Daughter was disturbed by this news.

While she is curious about Brothers, she doesn’t necessarily want a relationship. Somehow, though, after talking to Birth Mom, she felt their safety was her responsibility. I was reminded of an incident that had taken place when she was much younger. One day she told me about witnessing a knife fight between her brothers, and told me she had tried to make them stop, but she couldn’t. I had assured her that she was a baby, and it was the parents’ job to keep the children safe, not hers. She had been much relieved when I told her that.

There are times when I regret the promise I made to Daughter and Birth Mom. There are times when I wish I didn’t know how to get in touch with Birth Mom. I will sit down soon, though, and write that letter. I will mail it to a family member in another state, who will drop it in the mail to Birth Mom. I will pretend that Birth Mom can’t figure out where we live. I will try to be positive, and I will also seek once more to protect Daughter. I will gently explain that Daughter isn’t able to handle news of Brothers, and ask her to please not share her worries about them with Daughter. I will pray that when Daughter next makes contact with Birth Mom it will go more smoothly.

Special Olympics

Daughter played in her first softball game Tuesday night. Last year she fell and broke her ankle right after the first practice, so she had been waiting a long time for this. The game was an hour away—one of the joys of living in Tiny Village.

It was an interesting game, to say the least. The other team was a unified team, meaning that they had “partners” who were part of the team in addition to the Special Olympians. They didn’t have an umpire, so family members from both teams were recruited. Their first base coach had to leave early, so one of our coaches filled in.

Their pitcher was finishing up a hamburger when the game started, so he’d stick the sandwich in his mouth and hold it for each pitch. He even fielded a ball while holding the hamburger in his mouth. When the game was over, Daughter had to search for a coach who knew who had won and what the final score was. Our team won, 13-7. Daughter had two hits. The first one came after 4 strikes. Both were soft grounders that should have been outs, but the partners were careful to let our athletes experience some success.

Daughter played second base, and fielded a couple of balls and missed a couple of balls. She didn’t start, and was so nervous when she got into the game. Her first at bat, the first base coach didn’t hold her up on a fly ball, and she was tagged out. She was very upset, even though they told her it wasn’t her fault. She had an anxiety attack, and broke out into a cold sweat and started shaking. She didn’t take the field, telling the coaches she thought she was having a low blood sugar. They quickly signaled me. I ran into the dugout, and I was sure she was low. She was shaking so much she couldn’t check her own blood sugar, so I did it, telling her to calm down and take deep breaths.

Her blood sugar was a little high. I reassured her she was fine, and told her to drink some water and relax, and she’d be fine. One of the coaches asked me if she could go back in, and I suggested she ask Daughter what she wanted to do. Daughter went back in. She was so excited on the drive home that she had to call Granddad and all her aunts and uncle to tell them her team won and she got two hits.

I love Special Olympics. I love the fact that Daughter has an opportunity to experience success someplace. It does so much for her confidence. On the way home she talked about what she needs to do to learn to drive and get a job in the community. It’s amazing what a poorly fielded ground ball after 4 strikes did for her self-esteem.

The Picnic

Tiny Village is about 11 miles from Town. Most of Daughter’s friends live in Town, many of them in group homes or other supported living situations. The vast majority of them don’t drive. Daughter wants to have a cook-out, and invite all of her friends. Several years ago I informed Daughter that I would not pick up her friends, bring them here for a party, host the party, and take them home after the party.

Daughter’s best friend is a young woman about Daughter’s age who was adopted as an older child. B has not healed as well as Daughter has, and is often controlling and even abusive in their friendship. B talked Daughter into having the cook-out, but now will not be able to attend because she and her boyfriend, J, are going camping. I’m skeptical about whether the camping will actually happen, but Daughter believes B, and is disappointed that B is blowing off the cook-out she convinced Daughter to have.

Daughter had been busy planning games (water balloons and basketball, among other things), and had been very excited. Monday she came home in a very foul mood. Gradually the story came out. J and B have camping plans, and most of her other friends won’t have transportation to get here. Boyfriend offered to host it at his house, but needs to get permission from whoever supervises the house. Daughter wanted to have it here.

We discussed several options, and finally Daughter decided she would plan a picnic for her friends before the free concert in the park this Friday. Staff makes sure that most of the group home and supported living people get there, if they want to go. I was proud of her for coming up with an acceptable alternative.

After finishing her chores, Daughter retreated to the dining room. I thought she was working on her scrapbook again, but when I entered the room, I discovered she was working on a list. She was making a list of all the people she wanted to invite to the pre-concert picnic and the menu options she’d offer each of them! After getting over the shock, I explained that we weren’t offering up restaurant service, but would provide some food and they could take it or leave it. I also vetoed going out and buying a picnic basket for the event. Fortunately, she was agreeable. We do need to sit down, though, and figure out what food we will take, and how many people we will be feeding. I hope I haven’t created a monster!

Reflections on Open Windows

This morning a new central air unit will be installed. We have been almost 2 weeks without, and it has been an interesting experience. We had a few days over 90 that were pretty miserable, but most of the time we were able to get enough of a breeze blowing through the house to keep it from being too uncomfortable. At night, we turned on the window unit in my bedroom, and Daughter camped out on the floor. I have learned much from this time without air conditioning, and I offer them up now.

1. The neighbors have a very noisy dog.

2. A temperature that seems comfortable while sitting still can become very uncomfortable when trying to do anything physical.

3. Fresh air carries many allergens.

4. The neighbors have a very annoying dog.

5. Fresh country air can be very unpleasant if the wind is coming from the wrong direction.

6. When a sudden storm comes up, open windows allow a lot of rain in very quickly.

7. Cats like open windows.

8. There is more traffic than I realized in Tiny Village, and they aren’t all coming here, even if I do hear a car door slamming.

9. Window units in closed rooms with sweaty people result in very stuffy air.

10. Cats deprived of sleeping on the foot of the bed are very demanding the following day.

11. Using a hair dryer on a hot, humid day does not result in dry hair for very long.

12. Soft breezes and piles of papers can provide strong motivation to clean and organize a study.

13. Having a conversation over the sound of a barking dog can be quite challenging.

14. Flies can enter a house through the smallest gap between a screen and the window frame.

15. A soft breeze coming through an open window is very pleasant.

We will be grateful to have central air again. However, on cooler days, I will be much quicker to open the windows and experience fresh air and pleasant breezes. Those soft breezes are worth the inconveniences.

Pet Peeve

It happened again today. I took Daughter to a family picnic sponsored by our respite provider. When we got to the drink table, they didn't have anything to drink that was sugar free. I understand some people do not like artificial sweeteners. That's fine. For others, though, calorie laden drinks full of sugar are not an alternative. Daughter would easily have used her entire carbohydrate allowance for the meal just with the drinks they were offering. If you don't want to provide something with artificial sweeteners, at least have water available. When I asked for water for her I was informed they didn't have any bottled water. She can drink tap water, but she needs to drink something, and sweetened ice tea and lemonade are not alternatives for her.

The sad thing is, I know that Daughter wasn't the only diabetic there today. She may have been the only one with accompanied by a Mama Bear who insisted they go in and get her cub some water, though.

I wish this were unusual, but it's not. To further complicate things, Daughter can't have caffeine because of her seizures. Try finding something that is both sugar free and caffeine free when you're out to eat. Daughter can name the restaurants that have sugar free and caffeine free drinks available. Most often when we ask, the server thinks we're crazy.

I've paid full price for a cup of shaved ice with no syrup on it at the fair. Once again, the teen selling the shaved ice thought I was crazy. It was a hot day, they didn't have any sugar free syrup, and Daughter needed something to cool her down.

One place didn't have anything that she could drink, and they wouldn't even give the poor kid a cup of water. By the time I learned this, I'd already paid for our food, so we ate quickly and I went elsewhere to get her some water to drink.

With the epidemic of obesity in our country, you'd think that more places would begin to provide low calorie alternatives to sugar laden beverages. It hasn't happened yet, at least around here. I'm beginning to understand why Crystal Lite offers those single serving packages you can take with you to add to water. Next year when we go to this picnic, Daughter and I will take our own beverages. Unfortunately, that won't help the other people struggling with diabetes who might attend.

I Read a Book

I don’t know how long it has been since I read a complete book, but well over a year. There was a time when I was reading several books a week. When my mother began sinking into dementia, I became paranoid. Every lapse of memory or concentration I had was a sign that the same thing was happening to me.

I went to using manuscripts for my sermons, instead of the loose notes and outlines I had used for years. I was having difficulty thinking on my feet and finding words. I was sure it meant I was developing dementia, and I was going to follow the path my mother was on. Then I was diagnosed with sleep apnea. I got a cpap machine, began to sleep at night, and found that my memory and concentration improved tremendously. I stopped using manuscripts and went back to notes.

More recently, I’ve had difficulty with reading books. I’d read articles and Bible commentaries, but books just didn’t seem to hold my attention. I remembered that one of Mom’s earliest symptoms had been the loss of the ability to read and comprehend books. I began avoiding books, so I wouldn’t have to face my diminishing mental abilities. I returned books to my brother unread.

This past week I read a blog entry with a link that seemed to describe my difficulties with reading. I was relieved, to say the least. About that time, the book Ninety Minutes in Heaven appeared in my front door. Inside the back cover was a place for me to sign and date when I’d read it. The book was making the rounds of the church, and they wanted me to read it, and no doubt comment on it. Remembering the article I’d read, I picked it up and began to read it. I finished it within a couple of days. The relief was overwhelming.

Last night a woman approached me at the Ice Cream Social. “Have you read Ninety Minutes in Heaven?”

“Yes.”

“Isn’t it good?”

“Yes, it is.”

She was thinking about the assurance the book gave her about her son and husband. I was thinking about fact that I could still read a book cover to cover. We were both happy.

Diabetes Clinic

Four times a year we make a pilgrimage to the City for Diabetes Clinic. We spend several hours there, while Daughter is weighed, has blood drawn, displays blood sugar records, and sees the dietician, diabetes educator, and endocrinologist. This time our visit was a little bit different. The medical assistant who recorded all her medications and weighed her and did vital signs noticed it immediately. “You look really good.”

Daughter smiled.

I offered an explanation, “She’s in love.”

Daughter blushed and said, “Mom!”

Assistant smiled knowingly and assured Daughter that mothers are supposed to embarrass daughters.

Daughter was cute. She was bubbly, and probably happier than they’ve ever seen her. Her mood was further lightened by the news that she had lost 7 pounds in less than 3 months. Weight loss is harder when on insulin; and for a while all the extra food she was getting at the workshop because they were so concerned about the possibility of a low blood sugar made it almost impossible. I’ve adjusted the insulin and pointed out that they were unintentionally hurting Daughter with their treatment of her, so things have gotten better.

We were out of there much faster than usual. I strongly suspect that the doctor had heard the buzz about Daughter being so happy, because she came in first (usually she’s last) and didn’t have Daughter’s chart with her. Daughter usually is sullen and defensive at the clinic. They were delighted to see her bubbling with joy and so willing to talk to them.

We’re approaching the 8th anniversary of her diagnosis, so they’ve seen her many times. She was once hospitalized from the clinic when she went in insisting that she wanted her leg amputated. The doctor hospitalized her to switch her to a different insulin, and then got her friend to come in for a psychiatric consult. He moved her to the psych unit and changed her medications around. He was the one who first suggested she had schizoaffective disorder.

I’ve no doubt that part of Daughter’s happiness is related to her boyfriend. (They have another date tonight, and are both excited.) I think more of it has to do with the fact that her new psychiatrist has found the right medications for her, and she is now making good choices for herself. In the past boyfriends have triggered nightmares connected with her past abuse. I asked her yesterday how she was sleeping. “Great!” was her response. “I just go to sleep thinking about what D and I are going to do, and I have happy dreams.”

I’m sleeping much better, too.

Peace Within

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you....
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of you.
St. Theresa

When Maria Shriver spoke at Tim Russert’s memorial service, she quoted the first two lines of this prayer. Those lines jumped out at me, and after watching the service, I came down and looked up the prayer on the internet.

I am currently in the search process for a new church. I have been here for 12 years, and believe I have completed the work I was called to do here. I am ready for new challenges. Daughter needs to be someplace where there are more opportunities. This has been a wonderful place for her to grow up. I praise God for calling us from the inner city to Tiny Village, where Daughter has been safe and free to wander. When she runs away, I know she’s not going to get very far, and that the neighbors will keep an eye on her for me.

Living in Tiny Village also means that she can’t go to the store on her own (closest store is 10 miles away), and there isn’t public transportation to employment opportunities. When we go visit family, she loves being able to walk to the store alone. It would be wonderful if she could have that opportunity all the time. Currently we live about 3 hours from my parents. I would like to move closer to them so that I can offer more assistance and visit without having to camp out in the living room of Dad’s one bedroom apartment. Unfortunately, there aren’t many opportunities in that area right now.

I know that God will call me to the right place at the right time. I know that both of the churches I have served have not been ones I would have sought out, but have been wonderful places to serve and grow. I know that. There are times, though, when I get impatient. There are times when someone pulls some passive-aggressive move over at the church and all I can think is, “I need to be gone now!” Because I’m beginning to look to the future, I find I have much less patience for some of the idiosyncrasies in this community.

That is why the second line of that ancient prayer jumped out at me: “May you trust God that you are exactly where you are meant to be.” Just because I’m waiting, it doesn’t mean I’m not where I’m supposed to be today. Indeed, the longer I wait, the better equipped Daughter will be to handle all the changes that will come with a move. Transition and change are very hard on her. The growing maturity I see in her will make the upheaval of a move easier on both of us. Today, as I continue waiting for new opportunites and challenges, there will be peace within. Today, I will serve God where I am, and be grateful for the blessings of Tiny Village.

The Little Things

Once again I’ve had the opportunity to reflect on the growth and progress Daughter has made. She does a pretty good job of understanding my ministry and not being jealous. The one thing that can still cause her jealousy to flare up is when she sees me spending time with people close to her age. She once complained loudly to Grandma, “She has her own kid at home. Why is she spending time with those kids at the church?”

The other day she arrived home from the workshop to discover a young woman a little younger than she is here doing odd jobs for me. Daughter was not only gracious, but thanked our guest for helping her with softball skills a year ago. She told her, “I can hit the ball now, because of your help.” I was impressed.

The next morning I took a young woman who is a little older than Daughter and facing some challenges to breakfast so we could talk. When I’ve done this in the past, jealousy has flared and I’ve been made to suffer for my perceived disloyalty. Daughter was waiting for the bus and saw us leave. She waved cheerfully.

When she got home that evening, I was gone, visiting with a woman who had just marked the halfway point in her chemo therapy. She called my cell, and I told her where I was and that I’d be home in a bit. When I arrived home, she was in the kitchen fixing supper. I was impressed, to say the least.

These may seem relatively minor, but each of them is progress for her. It’s nice to see her continuing to grow. I’m especially pleased with how she handled being home alone for awhile. It gives me hope that the time will come when I won’t need to worry about getting a sitter when I’m gone for extended periods.

Listening to Your Body

Daughter has always had a difficult time understanding what her body is telling her. It is thought that she tuned out a number of sensations as a result of her early abuse. There are still times when she’ll come complaining to me about not feeling good, and when I ask for specifics and she explains, I’ll tell her she needs to go the bathroom. She’s always surprised when I’m right.

When she was diagnosed with diabetes, one of my fears was that she would not be able to tell when her blood sugar was low until it was too late and she’d lost consciousness. For a number of years, any time she’s mentioned any vague complaint, I’ve responded with, “What’s your blood sugar?” At one point I was sure she’d have that placed on my tombstone, as that would be all she’d remember of me. I’ve been pleased with how well she has learned to identify lows. She catches them 99% of the time. That doesn’t mean she has learned how to interpret the other signals her body sends.

The other morning I got up early and came down to cook breakfast, which I only do a couple of times a week. Daughter came down and was quite pleased, and quickly informed me that she was hungry. She checked her blood sugar, took her insulin, and sat down to eat.

“Mom, my stomach hurts. I can’t eat this.”

“I thought you said you were hungry.”

“I thought my stomach was hurting because I was hungry, but I was wrong.”

Having taken her insulin, Daughter needed to eat, or she would go low. She had taken insulin based on eating a certain number of carbohydrates for breakfast.

“You have to eat.”

“I know.”

She wandered off into the bathroom and came back in a couple of minutes. Sounding relieved, she assured me, “That was my problem; I needed to go the bathroom.” She sat back down and still couldn’t eat.

I suggested she go unload the dishwasher and talk to herself about how good her breakfast would be, and then she could stick it in the microwave to reheat and eat it. She tried, and was able to eat a few more bites. She finally told me she’d rather go low than finish her breakfast. She hates lows, so I knew she wouldn’t be able to eat the rest, so I had her drink some milk in the hopes that would make up for what she hadn’t been able to eat. She didn’t go low, so it worked.

Daughter often tells me how much she hates diabetes. I agree, though I always seek to be upbeat. It’s not fair that I have to force her to eat when she isn’t feeling good. It’s not fair that she can’t tell when she’s not going to be able to eat. If she’d been able to tell me what was wrong before she took her insulin, I’d have had her wait until after she ate so she’d just cover the food she actually was able to get down. Many of the things that most of us take for granted are major challenges for Daughter. It's just not fair.

The Break-in

Last week we wrestled all the screens into place and opened all the windows downstairs to make up for the lack of air conditioning. The window in my study, over the cat bed, was a particular challenge. It took two men to get it open, and they really struggled to get the screen into position. Once they did, the window wouldn’t stay open, so I found a folding ruler, and with it extended to 24 inches, it was just about perfect.

Saturday afternoon, I walked into the study, and noticed that the window was down, the ruler was on the cat bed, and the screen was out. I asked Daughter if she had closed the window. She denied even being in the study. I pondered what might have happened, and finally decided that maybe the screen and ruler had been knocked out when one of the cats had a confrontation with one of the neighbor’s cats, who sometimes hang out on our big front porch and torment our indoor cats.

In church Sunday, a woman (K) came forward with a confession. She had broken into our house Friday night in search of electricity. Her husband was doing the framing for the new sidewalk they are laying in front of the house. They were in need of electricity for the work, and since there aren’t any outlets on the exterior of the house, they decided they needed to get into house.

Daughter was on her date, so we weren’t home. For once I had actually locked the front door—and they didn’t know that there is a key in the unlocked garage (they’re probably the only ones in Tiny Village who don’t know). Poor K, she picked the hardest window in the house to climb into, because of the cat bed that hangs on the window sill. She also picked the messiest room in the house to enter. The thought of her breaking into that particular room may have actually shamed me into going in there and cleaning today—provided it’s not too hot, that is.

Slow

Daughter is slow. Daughter is very slow. Daughter is very slow at everything (except showers, but that doesn't count because she doesn't wash herself in the shower-- she just gets wet). After church today, we headed for the City to visit a man in the hospital. Daughter brought along some art supplies to keep her busy. When we arrived at the hospital, I gathered my purse and my Bible and got out. Daughter gathered her art supplies and slowly got out of the car. I had stopped on my way to the hospital to wait for her, because I knew that she wouldn’t be able to find me if I got too far ahead of her.

Because it was a Sunday, there weren’t many people in the waiting rooms downstairs. I pointed to a table where Daughter could set herself up, and headed for the elevators. When I came down, I spoke to Daughter and told her I was ready. I continued walking, but slowed down. When I was almost across the lobby (this is a big) hospital, I turned to see if Daughter was following. She was just standing up and beginning to gather her belongings into the backpack she had brought alone. I stood waiting, not very patiently, for her to put everything away and catch up.

Once we got in the car, she quickly fell asleep. This hospital is over 60 miles away, so she had time for a nice nap, and I was very jealous because I wanted to sleep. As we approached Town, I told her to wake up and get ready, because we were going to stop at the grocery store. She protested that she was too tired and asked if we had to go today. I asked her if she wanted milk for breakfast and something to take in her lunch tomorrow. She didn’t know.

We arrived at the grocery store, and I got out of the car with my purse, opened the back door and grabbed the two 5-gallon water bottles we had brought to refill, went and got a shopping cart to put them in, and turned around. Daughter was just getting out of the car, carrying nothing.

We finished our shopping and came home to Tiny Village. I pulled into the driveway and stopped before the garage. I always let Daughter out before I pull into the garage, as there is a ladder hanging on the wall next to her door, and she is famous for banging the door into it and chipping the paint. Daughter never begins to gather her things until the car has come to a complete stop. Before she gets out, she has to dig through whatever bags she has brought along to find her key to the house, because this slow individual couldn‘t possibly wait for me to get out of the car and come open the door. After she got out I pulled into the garage and gathered my purse and both of our water bottles. She was still trying to get her key in the door when I reached it.

There are times when I want to tell her to pick up the pace, but I know that if I do, she’ll slow down even more. Today I came in the house and made sure I was where I couldn’t see or hear her. My patience is gone, and I don’t want to see her move like molasses in the middle of winter. She keeps talking about getting a job in the community. At this point her inability/unwillingness to pick up the pace and the tics she develops when encouraged to speed up are among her biggest barriers. I do have a better understanding now of people who get frustrated with my lack of speed. Maybe I should let them spend a day with Daughter.

I just remembered. Tonight we need to fill the pill boxes for the next 4 weeks. I'm going to need to pray for some patience. I move about 6 times faster than she does on that, and I probably should double my blood pressure medication in preparation for working with her on it. I guess I'll have yet another opportunity to grow my patience tonight.

The Date

Daughter had a date last night. I drove her to town, where D met her at Pizza Hut for supper. A colleague and I sat across the restaurant. We had told Daughter we were going to come over and check on her every 2 minutes and ask how things were going. She was quite alarmed, and while hoping we were teasing, she wasn't quite sure. As it was, she was the one who came checking on us. My colleague, K, could see them; I was sitting with my back to them. K said Daughter kept looking over to see if I was still there. She stopped to talk to me on her way back from the salad bar, and again as they were getting ready to leave. I told her I'd bring her lawn chair to the park.

D drove her to the park, while I went to the pharmacy to pick up prescriptions. She called to tell me not to bother with her chair, she and her friends had gotten a picnic table. I told her I'd see her at the park, and would come sit next to her and put my arm around her. That drew protests from Daughter, and much laughter from her friends, who could apparently hear me. When I arrived, I could see them sitting with their friends. D had his arm around Daughter. I found a friend from church and sat in front of them. One of her buddies came over to talk to me, and hearing Daughter's voice above the crowd, I told him to go tell her her Mom said to be quiet and listen to the music. He was quite excited about delivering the message, and came back to gleefully report Daughter had not been pleased (I didn't hear her voice above the crowd or music again, though).

When the concert was over, D and Daughter quickly caught up with me. I stopped to talk to friends, and sent Daughter ahead to the car with my chair. When I approached the car they were happily hugging. They exchanged a kiss before Daughter got in. All the way home she was glowing. I accused her of going all starry eyed, but she was oblivious. She did come down to earth long enough to inform me she was never moving from this place, and tell me she wanted to go back to Town and hang out with D again today. I told her once a weekend was enough. They see each other all day every day and at special olympics softball once a week, so I thought one day a weekend was sufficient. She didn't argue.

This morning when I came down to the kitchen, I discovered that some orange juice and biscuits were missing. I suspect that Daughter was in to them last night, and it is a reflection of her anxiety about all of this. She still hasn't gotten up this morning, so her blood sugar is probably going to be sky high. I will continue to allow her to see D. For a while, at least, I will continue to be close by, which I think reduces her anxiety. Maybe it's my anxiety that's driving my desire to remain close when they're together. She had a good time last night, and she had an experience all teens and young adults should have. For that, I'm grateful.

Church Telemarketers

Churches are not immune to telemarketers. I regularly get calls seeking to seeking to sell me new curriculum, new videos, t-shirts for the youth group, fundraisers for the youth group, service projects for the youth group, various singing groups, copy machine toner (an old scam), and various other items and services. Today I received a call from a woman who wanted to know if we had a choir. “A very part-time choir,” I responded.

“Oh, well could I speak to the choir director, please?”

“We have a part-time choir, as in they sing twice a year. Do you really think we have a paid staff member sitting here in the office to direct a choir twice a year?”

“Oh.”

I never did hear what she was selling.

My favorite, though, was the company that wanted to sell me some curriculum. The first two times they called, I very kindly and patiently explained we weren’t interested. My patience had run out by the third caller selling the exact same curriculum I had politely declined two times. “As I told the two previous callers, we aren’t interested in this curriculum. Would you please stop calling us?”

In a very sweet voice, the young man said, “God bless you.”

For some reason his sickly sweet voice just angered me more. Fortunately, I didn’t say anymore.

Romance

Daughter is a 21 year old woman who was repeatedly molested before she turned 3. She wants a boyfriend. She is also afraid of getting close to any man, and doesn’t have very good taste in men. She came home the other day to announce she has a new boyfriend, D. He is in his 30’s, and she met him at the workshop. He lives in supported living with two other men, and has a car. Other than that, I don’t know much about him.

I do know, though, about her history with boyfriends. Her prom date has been labeled a sex offender and sentenced to prison. He’ll have to register for the next 25 years. (I blame the system, at least in part, for his troubles. He is developmentally handicapped, and when he graduated from high school the system set him up with an apartment and a job at McDonald’s and expected him to make it on his own with no supervision.)

There was the Iraq vet who wanted her to go spend the night with him the first day they talked. I said no. He was spending a lot of time at the VA for PTSD, and when he came to visit daughter, he was accompanied by his brother, who was looking after him.

There was T, whom she has “gone with” numerous times. I think the longest it lasted was 2 weeks. Before Valentine’s Day, I was threatening to put a sign around Daughter’s neck warning men to stay away. Sure enough, on Valentine’s Day Daughter came home and announced she was giving T “one more chance.” That one lasted less than a week.

There was J, whose parents were going to charge Daughter with phone harassment, until I gave them the phone records showing he was making most of the calls.

So, now there is D. I let them go to a movie with friends a couple of weeks ago, but they were “just friends” then.

Daughter came home tonight and said she wants to go to the concert in town tomorrow night with D and some other friends. She said D was willing to come pick her up and bring her home afternoon. I told her that I would take her, and would stay for the concert myself. This is part of a summer music series that takes place at a park in town. I assured her I wouldn’t sit by her. Predictably, she doesn’t want me there at all. With the price of gas, I don’t think D can afford driving almost 50 miles to transport Daughter. He drives a van, so he can’t be getting great mileage, and based on what Daughter earns at the workshop, he can’t have much money. I also want to provide Daughter with a safety net should she feel threatened or uncomfortable.

I doubt this romance will last very long, none of them have. Daughter is afraid of getting close to any man, as much as she longs to be part of a couple. Her therapist and I have worked with her on the differences between what happened to her as a baby and the skills she has to keep herself safe as an adult, but she still is overcome with fear and finds an excuse to break up when she gets too close. I feel sorry for D. He may be a very nice young man. At this point, though, I doubt he’ll be around long enough for me to get to know him. While I’m grateful she hasn’t chosen the promiscuity route in dealing with her history, I do feel sorry for the young men who she rejects when her fear overpowers her.

A Blessing in Disguise

Yesterday, with help, I opened all the downstairs windows and got the storm windows out of the way and the screens in position. My living room, dining room, and study each have two huge windows. It is so much work to switch out the storm windows and screens, that I haven’t bothered to do more than one or two the last few years. It cooled down nicely last night, and this morning I came downstairs to a cool house with a gentle breeze blowing through. As I sat here this morning enjoying the breeze and the sound of all the birds, I was reminded of waking up in my tent on cool mornings in northern parts of our country. I would often lay there in my sleeping bag, giving thanks for time away and the beauty of God’s creation, soaking in the sounds and the sun and shadows moving across our tent.

For years, we spent at least a week every summer camping. It would be a part of 4 weeks spent away from here for relaxation and renewal. Last year we didn’t go because in the midst of her psychiatric challenges, Daughter was too unstable to handle camping. Even though we weren’t camping, we had to return early because the loss of her routine was pushing Daughter back into psychosis. This year we didn’t go because we couldn’t afford it. We are in the waiting period between adoption subsidy and SSI, and I have had some major medical bills this spring. Just sitting here soaking in the sound of the birds and the gentle breeze, I have been renewed. I am reminded of what a gift it is to live in rural America away from heavy traffic and pollution. I am now profoundly grateful for the breakdown of the AC.

I’m sure that I will view it a little differently the first time it rains and I have to scramble to wrestle all the windows down, but today is sunny and clear, and I am grateful.

Irony

We got home from our travels about 6:00 in the evening, and after we unloaded the car, I turned the AC on and turned on the fan I have carefully positioned over the duct in my bedroom. After a restless night, I woke up to find the house was still over 80, and with a sinking feeling, I knew what was wrong. Village residents rely on well water, and most wells in our area produce water that is full of sulfur. Remember sulfuric acid? Well, it floats through our homes and eats away at washing machine controls, copper pipes, and the copper coil and fittings in air conditioning units. It also can eat through the coils on refrigerators and freezers, and even the wires in televisions and such, though I’ve been fortunate in that regard. Over the course of the last year, this is the 4th time I’ve had to call the service people out to repair leaks. One trip last year extended over two days, as every time the poor man fixed one leak, another one would appear.

Since this is the church’s parsonage, the church is responsible for repairs and maintenance. I talked to the president of the trustees and explained the situation. “I know we can’t get a new coil for this unit, and I’m not sure it’s worth investing any more money in it. I’ll call the company, but I’m going to have them check with you before doing any repairs. I’d be satisfied with a window unit for my bedroom, but I don’t do well with heat, and so I need something.”

The service people couldn’t come until the next day, of course. As I feared, the news was bad. The leak was in the coil, and the service man (we’re on a first name basis after all his trips out here) agreed that buying a new central air unit was probably not the best idea, given the quality of our water.... I called the trustee president. He and his son were here within a few hours to place a window unit in my bedroom. The trustees will discuss the situation at their meeting Sunday night. I requested another unit for Daughter’s room and one for the dining room downstairs. The dining room is where I have lots of meetings, and I can always move my computer in here to work.

The trustee and his son also helped me get some windows open. This beautiful house is almost 110 years old, and has the original wood windows with storm windows added on the outside. None of them function well, and some of them barely function. I told them that if we went without air, it would probably be a good idea to do some work on the windows. Figuring out how to restore or replace the windows might make the replacing the central air conditioning look cheap! I thanked the trustee and his son profusely. The trustee just grinned and said, “We don’t want a cranky preacher!” One advantage of living in a farming community is that except during planting and harvest, there are usually men available in the middle of the day, and they have lots of experience with solving all sorts of problems.

Two nights in a hot bedroom have given me a greater appreciation for what my father suffered all those days his air conditioning wasn’t working. At least I had the good sense to get busy on solving the problem the first day!

Asking for Help

Dad lives in an independent living apartment in a senior citizens’ complex. Ever since he got out of rehab after a hospitalization at Easter, he’s been complaining of difficulty sleeping. When I’ve asked what he thought the problem was, he’s been vague, occasionally suggesting that he was having trouble getting the temperature right in his bedroom.

Dad’s apartment is always too hot for me. When we’re there, I sleep in a recliner in the living room, and Daughter gets a couch. Since there are separate thermostats for the bedroom and living room, at bedtime I adjust the thermostat down in the living room, turn the ceiling fan on high, and make sure the recliner is positioned to get the breeze from the fan.

So, I wasn’t surprised that Dad’s apartment was hot when we arrived. When I checked the thermostat, I found that though the AC was on, it wasn’t cooling. Dad told me it wasn’t working right. I found that the thermostat was loose, and if I pushed it in, the AC would come on. The second night Dad told me to leave his bedroom door cracked so that he could get some of the cool air in his bedroom. I asked about the AC in his bedroom, and he said it wasn’t working. I went in to investigate, and found it was blowing out room temperature air.

The third night it was cooler, so I opened windows in the living room and bedroom and turned off the air. Monday morning I went down to the front desk and put in a maintenance request. (I knew they wouldn’t have many maintenance people in over the holiday weekend.) I asked Dad if the AC had worked at all this Spring/Summer. He said he didn’t think so. When we left to do some shopping at stores that he isn’t comfortable driving to, he expressed concern that they wouldn’t come fix the AC with no one home. I went back to the front desk and asked the receptionist to tell maintenance to go into the apartment and fix it even if we weren’t there.
As we were out and about, Dad said, “You know, maybe the reason I haven’t been sleeping well is that it’s been too hot in my bedroom.”

One of the reasons Dad wanted to sell the house was because he didn’t want to deal with maintenance issues. He didn’t like calling plumbers and such, and doing things himself was becoming too difficult. When they moved into the apartment, he celebrated the freedom from those responsibilities and how easy it was to just call maintenance to deal with the problems. Several years after he moved in to get this freedom, he still hasn’t learned to take advantage of the services that are provided.

When we returned from our errands, the maintenance man was in the apartment. He had tightened the thermostat and replaced the heating/cooling unit in the bedroom. He was finishing replacing the one in the living room. The morning after the units were replaced, I called Dad.

"How did you sleep?"

"Best night's sleep I've had in a long time. I think the air conditioning helped."

I guess next time he complains about difficulty sleeping, I'll ask about the condition of the heating/cooling units. Sigh.

The Literalist

I’ve been doing odd jobs for Dad—activating a credit card, redeeming reward points, cleaning the carpet, and changing his bed and washing the linens. I told Daughter that I wanted her to go get the sheets off his bed and the blanket with blood on it. I gathered the laundry supplies and told her to follow me down to the laundry room with the linens. When we got down there, I took the sheets and began treating the blood spots, and noticed there wasn’t a blanket. Daughter insisted I hadn’t told her to bring the blanket. I sent her back to the apartment to get the blanket with the blood on it. She returned with the blanket, and by this time I was done treating the sheets.

“Where’s the pillow case?”

“You didn’t tell me you wanted the pillow case.”

“I’m sorry, I thought you understood that when we change the sheets, we also change the pillow case. Please go get it.”

She returned with the pillow cases, and the second blanket.

“I didn’t ask for that blanket.”

“Well, I brought it.”

I guess she figured that she’d prevent me from sending her back for anything else.

I never know when she’s being deliberately difficult, and when she really doesn’t understand what it is I’m asking. I suspect it varies from day to day.

I haven’t decided if I’m going to make the bed by myself or ask her to help me. Some days she has issues with spatial things and understanding my directions. On those days, trying to work together on something like making a bed is an exercise in frustration for both of us. I’ll probably do it by myself.

Little Celebrations

I went over to visit with Mom around supper time. She was seated at her seat in the dining room, folding and refolding a napkin. When I walked over, her face immediately lit up. Celebration number 1. I gave her a hug and sat down next to her. She went back to folding the napkin. The woman seated next to her told her she needed to visit with me. I assured her that it was okay, and that the fact that she recognized me had been reward enough for this visit. I teased Mom, telling her to make sure that napkin was folded perfectly. (She was always a perfectionist, and I could never fold a towel to her high standards.) I was rewarded when she made a face at me. Celebration number 2.

She looked at me, and sized up the skirt and shirt I was wearing. She ran her finger over them both and smiled. I said, “Do you like them?” She nodded. I thanked her. Celebration number 3.

Her meal came, and I encouraged her to eat. When I handed her the second half or her fish sandwich, she waved it off, saying, “I don’t want them.” She said a complete sentence to me, my fourth celebration of the visit.

I helped her to the bathroom, and after she had finished her supper, I helped her up and out into the living room. I said good bye, and promised to be back the next day. As I headed out, she began to cry. I went over and hugged her again, and repeated my promise to visit again.
As I left, she followed me to the door. She pushed against the locked door as I was trying to close it. At first I was afraid that she was trying to follow me. But when I turned to speak to her, she said, “I just wanted to say hi.” A long sentence. Granted, she said was confused about hi and bye, but it was a long, mostly appropriate sentence. I opened the door and gave her more hugs and kisses; then she willingly returned to her locked cottage. The fifth and biggest celebration of the evening.

Dementia

My mother has dementia. Earlier this year we moved her from the independent living apartment she shared with Dad into a memory care cottage. She hasn’t been able to communicate well for quite some time. Daughter and I came to Dad’s apartment from our conference. We came, and have been visiting Mom daily. The first day we took her for a walk. She was slow to recognize us, but I think she enjoyed the walk. I told her we’d be picking her up for a cookout at Sister’s, and went through the list of who would be there. She didn’t seem to understand.

Yesterday we took her to Sister’s for a cookout. Daughter walked over to the cottage to get her ready, and then I drove Dad over to pick them up. She always recognizes her granddaughters, even when she doesn’t recognize her daughters—I’ve teased her about that several times. Daughter said Mom was surprised we were going out, and had no memory of our conversation the previous day, which didn’t surprise me. When we got to Sister’s, it was a relatively small group—just 9 of us. Removing Mom from her routine and getting her around more people is hard on her. She is quickly overwhelmed. She did well with parts of the day. She ate all her hamburger, even though she took parts of it apart to eat it. We were attentive and took her to the bathroom any time she began to get restless or wander, as that is often a sign of a need to use it, but she can’t always remember where it is or what to do when she gets there. Even with our attempts to anticipate her needs, Sister had to intervene when Mom walked through the house pulling down her pants.

At one point when I took her to the bathroom, and she was obviously distressed, not physically, but emotionally. I finally suggested it was hard when she was around so many people, and she couldn’t follow all the conversations and felt overwhelmed. She began to cry. I hugged her and held on. When I walked her back into the cottage, she didn’t want me to leave. I promised I’d be back to see her today, but I’m not sure she understood that I would return, just that I was leaving her there. Finally I walked her into her room, where she pulled a cardigan out of her drawer and set out to walk the circuit around the perimeter of the common areas of the cottage. She will walk, pausing every so often to refold the cardigan, until she wears out. Hopefully the walking will help her to forget.

I came back to the apartment, where Dad slept through a movie he wanted to watch. On top of the television is an electronic photo frame that shows a slide show of photos from my parents’ life together. I kept seeing the pictures of her, bubbling with joy and life. There are pictures of her showing off the appliances and cupboards in the new house they bought as a young couple over 50 years ago. There are pictures of her in the dirt backyard pregnant with me shortly after they moved in. There are pictures of her beaming with pride as she shows off each of her babies and at all the graduations and important events in our lives. It’s hard to equate those pictures with the woman we took to the cookout. Now, we celebrate when she recognizes us. We’re thrilled if she responds to conversation in a way that indicates comprehension. She called me a brat today in response to some gentle teasing. I rejoiced. We watch her more closely than we watch her 3 year old granddaughter, concerned that she might wander off, or fall, or not be able to find a bathroom when she needs it.

It is hard visiting her now. It is especially hard when I realize that she knows what she has lost, and is grieving. I grieve, too. The first day we were here, Dad went in to take a nap. When he awoke, he said, “I sleep better when there are people in the apartment.” We all miss her. We all grieve.

Distractions

On our last night at this conference, we always have worship with communion. We worship every night, but the last night is a little more formal. The worship is always the highlight of the week for me. Daughter and I sat in the second row for the communion service, and there were some preschoolers in front of us. This is a community that welcomes all children, and the children are encouraged to sit on the floor at the front and participate in worship. This year we have on little girl who is a handful, to say the least. A friend of mine, who teaches preschool for special needs children, commented at supper that she hadn’t quite figured out a diagnosis for this child, but she knew there was one.

Well, this little girl was one of the preschoolers in front of me. She was fidgeting, talking to friends, and generally being obnoxious. I found myself distracted. I went up for communion, and when I came back to my seat, I closed my eyes as I prayed. Suddenly it hit me. Why was I allowing a little girl to distract me from something that was important and meaningful to me? Why was I focusing on her, instead of on God? As I reflected further, I realized how often I allow little things to get in the way of what is really important.

One of the things I’m going to do in the next day or so is sit down and think about what are the priorities and what are the distractions in my life. Then, I’m going to make sure it is the priorities and not the distractions that structure my life. I’ve already identified one thing that at times becomes a distraction: the internet. It was down the last two days of the conference. While it was frustrating, it was also freeing....

Feeling Old

One of the young women at the conference sat down at the table with me the other day to eat. She had met Daughter, and so she asked me if Daughter was my granddaughter. I told her she was my daughter. She then told me Daughter is beautiful and I thanked her. I got to wondering—do I look that old? While I am old enough to be a grandmother, I’m not old enough to have a grandchild who is 21.

Maybe I should consider coloring my gray hair, though I consider it a badge of honor. I’ve earned every one of those gray hairs. Tonight I actually feel like I’m old enough to be Daughter’s grandmother. Walking around the lake and dealing with all of the steps reminded me that I need to get back to regular exercise. I could use her comment to motivate me to get back in shape. Maybe I’ll just figure it’s the ignorance of youth, where everyone over 40 is considered old, and distinctions are lost.

Fireworks

The conference center had fireworks in celebration of the 4th of July. We walked to the other side of the small lake to watch them. Daughter quickly grew bored with the fireworks. We hadn’t taken chairs, and the ground was wet, so we were standing. Every so often she’d come over and lean on me and tell me she was tired and ask if she could go back and go to bed. I knew she wouldn’t be able to find her way back alone, and I wasn’t leaving, so I kept telling her no.

Finally, frustrated with the constant whining, I informed her that every time she complained I was going to make her stay up another 5 minutes when we got back.

“You can’t make me stay awake! That only works with hiking.” (The rule when we go for a hike is that every time she complains I add another mile to the hike.)

A friend said, “I’ll give her a sharp stick to poke you.”

I simply said, “Try me.”

She was standing behind me, so I don’t know what she did, but a friend said, “I saw that. It’s not that dark, and I can still see what you are doing.”

I told her it was probably a good thing I hadn’t seen whatever it was, and she’d best hope I didn’t get the eyes in the back of my head working.

She watched the rest of the fireworks without complaining. When we headed back around the lake, she quickly ran ahead of me. She paused and said, “We have to get back, Mom, there’s going to be music and singing tonight.”

“I thought you were tired and needed to go to bed.”

“I was just tired of the fireworks, Mom.” I guess she can tell the truth—eventually.

Lying

Daughter lies. She says she can’t help it, because she was born into a family of liars. I point out that she’s been with me for over 18 years, and I tell the truth. She is getting better about telling the truth, but there are still times when she lies.

Last night when I got back to our room after the evening activities, she was already here in her pj’s.

“Did you take a shower?”

“Yes.”

“Will I find evidence?”

“Yes, my towel is wet.... You shouldn’t have to check, you should just believe me!”

I was silent, and continued what I was doing. I was 99% sure she was lying, since the protest was a good sign she was being less than honest with me. It wasn’t long before she said, “Okay, I didn’t take a shower tonight. I’ll do it tomorrow.”

This morning I got up and showered, and when I finished, Daughter headed to the bathroom. She quickly came out fully clothed.

“What happened to the shower?”

“You said I could wait until tonight.”

“No, I said you could wait until this morning.”

“You’re a liar! I hate you!” She shouted this as she headed to the bathroom to take the shower.
I could hear her in the shower fussing and fuming. I’m not sure whether it was God or me who was the target of her anger. I hoped that the people in the room next door couldn’t hear her.
It wasn’t long before she emerged from the bathroom. “Sorry.”

As we headed out the door for breakfast, I said, “I’m sorry if you didn’t understand I meant you were to shower this morning. You were beginning to smell pretty ripe. It would really be embarrassing to be with your friends and smell bad.”

She agreed.

This whole exchange was major progress:

1. She confessed and acknowledged the lie before I verified it. There was a time when she would have continued denying the lie even when I proved it to be a lie.

2. Very little of the anger was targeted at me. After her initial outburst, she went into the bathroom to take her shower and express the rest of the anger.

3. The apology came quickly.

4. She didn’t blame me, but took responsibility.

5. I didn't react and take the bait, but let her work it out. She knows how I feel about lying. She knows the consequences of lying. I didn't have to tell her again.

I celebrate the progress, and believe that someday she will tell the truth at the beginning, and I won’t have to constantly check out her stories.

Growth

One of the good things about returning each year to this community is that they help me recognize Daughter’s progress. A friend gave me a picture she had taken last year of Daughter and me. It is obvious that Daughter was not in a good place. You can see the tension and stress in her face (and mine, too). A year ago when we came here, Daughter had just finished her second psychiatric hospitalization in less than 3 weeks. She would have a third hospitalization before the summer was over. This year she’s much happier and more relaxed. You can see it in the way she interacts with people and her willingness to leave my side.

Daughter's going to be one of several adults who are with the children this evening while the adults listen to the keynote speaker. She’s participating in the prayers in worship, and asked me to help her find a Bible verse she wants to use in her scrapbooking class (I am the vine, you are the branches....).

I had supper with a woman who hadn’t been here in 4 years. She complimented me on the growth and progress she could see in Daughter. I get so tied up in the day to day challenges. I forget to look back and see how far we’ve come. I forget that a year ago voices were telling her to kill me and it was impossible to reason with her. This year we successfully negotiated a compromise regarding the talent show and what it is and isn’t appropriate for her to do in it.

Not only am I being renewed, I'm gaining perspective and celebrating the growth and progress of this past year.