It's Come to This

There is nothing anyone can do to make my mother happy.

This is the sad reality I have recently come to accept, painfully. For the past 9 months, my family has exhausted itself trying to make my mother happy. It must be part of her dementia, or how the dementia manifests itself. Before her mind started going, complaining was just not part of her personality. Now it has consumed her, she complains about everything we have done to assist her.

Mom came for a visit in November last year. She wanted to try living in her house alone, after spending almost a year living with my sister in New Mexico after my father died. Mom made it one night in her house and then wanted to stay with my family. While she was not a burden living with us, it was stressful. She needs help with everything and is not capable of entertaining herself. We are a very busy homeschooling family, so she came with us to all of our activities. This squished the kids in the back seat of the car, leading to stressful drives. Mom also took over Medium's room, which she agreed to up front but came to resent later. The kids had to be quiet in the evening when Grandma went to bed and put up with a lot of her quirks.

When she decided to move back to the area permanently, we researched Continuing Care Retirement Communities, settled on one nearly half an hour away and moved her in. Mom was placed on the Assisted Living floor. The daily list of activities was encouraging, the community is full of vibrant seniors, many of whom use walkers or wheelchairs and are engaged in their surroundings. It is also in a beautiful place with many walking paths nearby, including one right outside the facility. It seemed the perfect place.

When Mom moved in, the community was experiencing an outbreak of a stomach bug. We hadn't counted on contagious diseases being a part of her new life. It was a prolonged outbreak because it passed quickly and spread even quicker, so people had it multiple times. The facility responded appropriately, shutting down the 5th floor (the Assisted Living floor) when it became a problem keeping residents in their apartments for the required 48 hours after the last symptom. I spent 6 weeks taking my mother somewhere every day to keep her from going stir crazy. There were no activities during the outbreak, to reduce the spread of the virus. Then Mom got it. Mark picked her up that day to take her shopping or for a walk, and she had forgotten she still had diarrhea. This is how the virus spread. My entire family got it.

When the virus passed, activities started and we were hopeful that Mom would have a nice, fulfilling life. Except she couldn't remember anyone's names or the conversations she had with them to make friends. And she didn't like any of the activities that weren't exercise related. That knocked out card games, word games, crafts, movies and book discussions - all those things that help with memory function. Plus, Mom thought the exercise programs too easy. So, we had her join the fitness center where she could work at her own pace three times a week with the help of a physical therapist. After we were gone one weekend in March for the fabulous InHome Conference and Mom decided to go for a walk with another memory impaired resident in 30 degree weather and got lost, we hired someone to come take her for a walk each day.

We thought Mom would adjust and learn to love the place. She complained about being dragged to activities, she complained about having nothing to do. She could not turn on her own television to watch the Australian Open or Wimbledon, so we drove out there to turn it on for her. She would either forget how to turn on her radio or end up accidentally changing the station, and then forgot to ask for help with it, so she was miserable without her music. She wandered throughout the building. On at least two occasions, she went to the concierge in the middle of the night in her pajamas to demand to be given her morning pills.

Then she started telling everyone how much she hated the place. As the weather improved and our schedules lightened up for the summer, we began taking her to her house in Indiana for the weekends. This became the only place she was happy, which meant we took her there nearly every weekend and for a whole week in July. She told everyone she ran into how much she hated living in her CCRC and even said "I don't know why they make me live there."

I spent a month working to arrange for live-in caregivers so Mom could live in her own home. (This took longer because of three major storms that took out our power three times, caused major tree damage, house damage from our tree to the neighbor's house, a complete loss of the entire contents of two refrigerators and a standing freezer.) The caregivers can live with her on an alternating schedule, so the two of them can get some respite and days off. They have agreed to walk an hour a day with my mother, take her to the store, hairdresser, etc. Mom can be in her own home, with her own books and her own schedule.

It's been a week. And she hates it. She has all the same complaints as she had in Assisted Living. I believe, though, that she is safer and better taken care of.

I had hoped for a magic bullet. Now I know there is none. My mother does not understand what is happening to her. The only thing that would make her happy would be to have her old life back. Her life before dementia and before my father's Parkinson's. I can't do that for her and can't continue to sacrifice my family and home to try to make her happy.

Maybe with time she will come to accept where she is in life. Maybe she will rail against it until the very end.

It is beyond sad.

Good Impact

I consider myself to be fortunate to have wonderful friends. I'm always learning something new from them, forever expanding my horizons and changing my way of thinking.

One friend suggested having a documentary discussion group at our weekly park days with the homeschool group. We selected the film No Impact Man, but then didn't discuss it much. We will probably talk about it more at a future park day. I'm glad I watched it. While I don't think I could go so far as to stop buying toilet paper, the film made me think about how big of an impact my family has on the environment. Yes, we regularly spill over our five recycling bins each week, but wouldn't it be better to not have all that stuff to recycle in the first place?

The movie made me think of all the ways I used to be better about reducing our waste and how far I have slipped back into the mainstream in the past few years. We used to have worms eating my garbage. We had an indoor electric composter for a while. We have had pets that eat our vegetable scraps. All those have gone by the wayside - the worms were freed when they ate too slowly, the composter died under the weight of our bread crusts and banana peels, and we are on our last rabbit. She has lived two years beyond her expected life cycle.

Between No Impact Man and the Polar Bear lecture a week or so ago, I'm going headlong on a bender about our consumption and waste. My benders are seldom pretty.

Today's target is our food. Actually, that has been a target for a few days now. We've been eating more meatless meals and less processed food. Or trying to. I decided we should be making our own bread again. Back when we had just two kids and when they were less busy, I made bread all the time. Complicated breads and simple bread machine loaves.

Today, I opted for a bread machine loaf. Yesterday I made foccacia on the grill, which got me on a roll. I found a recipe someone gave me that I had been meaning to try. When I got back from taking Small to his one hour dance class, I ran out again to get the strange ingredient - mashed potato flakes. I had a little guilt because I am capable of making my own mashed potato flakes in my dehydrator, but wanted to ride the wave of the desire to use the bread machine.

Nothing is simple or straightforward in a house with three kids, so getting the ingredients (while scoring a clearance sale on Italian sausage half off, there goes the meat reduction thing) was easy enough, but I pushed the envelope on the time factor. I asked Large to water the outside pots while encouraging Medium to practice her 4th half hour of piano for the day, and scurried off to the kitchen to put in the ingredients for the machine. But, the rain barrel was full and strangely off its cinder blocks with the spout smashed in, so Large needed more help. The phone rang and a new assignment fell on my lap. I picked up a weeping Small who was worried about me being five minutes late, did a little more cooking, had a non-text conversation with Mark, another dance class for the older two, another round-trip to the north side and came home to a sleeping house and a completed four hour bread machine cycle. This is what I found inside.

A failure to add yeast. It is a large hockey puck. Or maybe a shot put. Waste. Impact.

On the other hand, between runs to the dance center, I managed to put in a double batch of granola. I left instructions with the men of the house for completion and after discovering the bread disaster, I found this.

Breakfast! And I have my friends to thank for it.

Give and Take

Ever since my Mom moved back to our area, we have been taking her to her house on the Indiana dunes every couple of weeks. This means that one or two weekends every month we lose time to spend on our house, yard, garden. It means a much longer drive to Large's dance classes at the Academy of the Joffrey downtown. It means we have to arrange for someone to take care of our menagerie. In general, it is a disruption and has added another layer of complication to our lives.

On the other hand, we get to spend time in one of the most beautiful places in the Midwest. We get to stay in a comfortable house at least twice the size of our own. We get to cook dinner in a kitchen that affords us the opportunity to see an amazing variety of birds out the window. We wash dishes while watching hummingbirds at the feeder. In summer we get to see lizards run around outside, frogs perch on the windows at night and enjoy our selves for hours on end on a deserted beach.

So, we don't complain. We are learning how to work around the disruption to our domestic routine. As long as the house is important to my mother, she should be able to keep it and visit it whenever possible. She wants to have more big family gatherings here, even if her days of cooking dinner have passed her by. She gets confused in the house, misplacing things. But she knows it is hers and it reminds her pleasantly of my father. Just after he died, it was hard for her to be in the house he built. Too many ghosts of his long decline were lingering to disturb her sleep. She focuses more now on the happy memories now that some time has passed. As do I.

It is always a big homecoming to my mom when we drive up. She thinks it has been months since she was there, when really it has just been a few weeks. She marvels at how clean everything is, forgetting my efforts to tidy up when we leave and ignoring the dead bugs everywhere. She checks on the fish, who are always happy to see her and be overfed. She asks me to build a fire. The house brings her a lot of pleasure, but also some anxiety. It's size is overwhelming, she's always looking for clues around the rooms to remember what she is supposed to be doing. She's always anxious about leaving, about getting the day and time right to leave. In a way, it's probably a relief to her to go back to her apartment, to her other home which also doesn't quite feel like home.

The kids enjoy their time there. When it rains, they read, use my father's art supplies or play wii. When it doesn't rain, they are outside exploring or on the beach. It's a magical place for them, an integral part of their childhood. They are so lucky.

Unexpected Moments

This past Saturday, I had an unexpected addition to a planned visit to the Art Institute with Medium. We sometimes hit the Art Institute with Large is at his Joffrey class. Small decided at the last minute that he really, desperately wanted to come along. I suspect he just really, desperately didn't want to go with Mark and my Mom on their walk, to a plant sale and shopping at the Jewel. He pleaded his case impressively while we were hurrying to get Large to class on time and we brought him along, full of conditions.

Medium and I wanted to do the audio tour of the King, Queens and Courtiers exhibit, did he understand that? It's a half mile walk to the Art Institute from the parking garage near the Joffrey and he wasn't to complain on the walk. We were going to go to the plant sale at the Lurie Garden afterwards and he couldn't complain about that either. Yes, yes, yes, he got it.

For being only 7, Small did very well with the audio tour. No, he didn't make it to the end. Yes, much of the time it seemed like he was only interested in using the device, announcing "Done!" each time he got to the end of a segment. But he got what he could out of it. Because we were 45 minutes into it by the time we got to the Da Vinci, he was not all that impressed. And he didn't like the chicken fingers at lunch, but my fish and chips weren't all that great either.

What he loved was being with us, having his big sister explain things, hold his hand while crossing the street and gripping mine when he was afraid of the bridge going over Monroe to the Modern Wing. It was an unexpected group of happy, tender moments.

Mothers

It has been six months now since my mother returned to the area. She went to stay with my sister in New Mexico after my father died, but came back for a visit and decided to stay.

At first she lived with us. That was a challenge in many ways, but we knew it was temporary. We found a Continuing Care Retirement Community for her nearby and she was placed in assisted living. While physically very active, she is declining mentally and needs help with many little every day things.

Her apartment is 25 minutes away from my home. There are many, many places she could have lived in that were closer. Some of those met her first two basic requirements: no religious affiliation and no buy-in. But her biggest requirement was to live in a place where she can walk every day the weather cooperates. Most of the winter, I bemoaned the fact that the drive to see her was longer than I wanted it to be. Now, I am grateful and believe we made the right decision.

My mom isn't one of those little old ladies who is content to walk to the duck pond and back. She wants to go for a few miles, walking nearly an hour at a stretch. Her community boarders a large park system. Her walk takes her past baseball and soccer fields, a skate park, water park and huge community park with two ponds and a creek, picnic shelters, nice hills, beautiful flowering trees and some wildlife. She loves her walks. Because I can't be there every day to walk with her, we have hired help to take her out. This walk is essential to her well being, the days she only gets to the exercise classes or the fitness center are not good days for her.

I really enjoy the days when I am able to walk with Mom, particularly now that I am not as worried about how cold she is. Sometimes we have a three generational walk with one of my kids along, most of the time it's just the two of us. We catch up on our news and then mostly walk in silence, Mom walking a step or two behind me. I think she does that to make sure there is nothing to trip on, no matter how I alter my gate, she remains a bit behind.

We saw a family of geese the other day and many nesting ducks. We also heard chorus frogs near the tennis courts. Mostly we just walked in silence and enjoyed the day. I am glad to have her living close to me.