elizilla

Since we lost the giant trees this spring, we now have much more roof exposed to sun. And with the electric heat in the casita we need more electricity. So we got some more solar panels. It’s a 70 percent expansion. They were installed last Friday.

When the crew hooked them up, our whole house backup battery went into an error state which they have not been able to resolve. They have got an RMA approved and will be replacing our battery. At no cost to us, but it’s still annoying. Hopefully we won’t have any grid outages while we wait.

A couple weeks ago I chatted with a WAVE Bus representative at the farmers market. They were there to promote the WAVE Bus as an option for everyone, not just elderly and disabled folks. WAVE has gotten some grants and they now have 14 vehicles, all of which have wheelchair lifts. They serve the portion of Washtenaw County that is not served by AAATA. They have three scheduled routes plus door to door service. They cannot originate a trip from the AAATA service area, but if I book a round trip from Dexter, they can take me to Ann Arbor and bring me back.

Since I still haven’t sorted out a good method to take my wheelchair in the car, I decided to try it. For my test ride, I decided to take the regularly scheduled bus from Dexter, and go to Meijers.

The closest stop is at a bus shelter on Main Street, at the eastern edge of the downtown business district. It is a couple blocks from my house. I set out about 20 minutes before the bus was due. I know that my wheelchair bottoms out at two spots on the south side of Main Street, so I made my way on the north side. But when I got to Monument Park, the sidewalk was closed by an ongoing project where they are replacing gas lines. I had to drive my chair out into the street and cross by the DQ. Then I discovered they had also closed the sidewalk at Baker Rd, with the construction there. So I went back to the north side of Main, and went up Central and around the park, and cut through the driveway at WISD to the crosswalk on the other side of Baker, and made it to the bus stop only slightly late. Since I had been horsing around within sight of the bus stop for at least ten minutes, I knew I had not missed the bus. But the bus did not come. After a half hour I called WAVE to ask status. The dispatcher said the bus had broken down and was not coming. But he would send a bus just for me! Where do I need to go? I told him not to, since this was just a test ride.

It’s unimpressive that the bus did not come. But I was impressed that they offered to send someone to get me immediately, just like that. When I used to depend on AAATA, and their busses left me stranded, they never tried to resolve the problems it caused me. Or even showed any interest in preventing it happening again. They were more inclined to compound this kind of error by making me pay an extra fare rather than taking my transfer on the next bus.

So, three days later I tried again. Two of the three sidewalk blockages at Monument Park had reopened, and I was able to drive my chair around the barricade at the park entrance. The spot that had been dug up on my previous attempt, had been filled with what looked like cold patch. It looked bumpy but doable. So I rolled onto it, and sank! It was not cold patch. It was some kind of ground up asphalt and soft sand mixture. So there I was, stuck.

After about ten minutes, some construction workers spotted me, and came across the street to get me out of the sand trap.

I made it to the bus stop in the nick of time. And this time the bus came. The driver was able to load my wheelchair, and I went to Meijers.

My mom passed away on July 29.

They never managed to get her back on her feet, after the hospital stay I posted about earlier. She became more and more unwilling to even be transferred to a wheelchair by the care home staff. My dad spent every afternoon sitting with her. But she had no idea what was going on. We moved her to hospice about ten days before her death. I think my dad always hoped she would perk up, but instead she just stopped eating.

Her funeral was well attended, probably twice as many people as my dad had expected.

It has gotten pretty hard to hobble through public places with my walker. So I have been trying to find a good way to transport a power wheelchair or mobility scooter in the car.

This is something I never thought about when I could just walk easily. Wheelchair users are on a spectrum. Most are not so disabled that they just sit in their wheelchairs all the time. I am not the kind of disabled person who needs to ride in the chair in the car. A giant wheelchair van would be overkill.

I own a power wheelchair and a mobility scooter. Both of them can be taken apart and put in the trunk. But not by me. And it’s kind of a big production even for someone else to do it. Enough of a chore that it seems easier to just keep hobbling with the rollator. Or just stay home.

So I have been looking for something that I can do on my own, that isn’t so hard that it makes the rollator look like a better option. That doesn’t require a whole new giant vehicle.

First I looked at getting one of those trailer hitch mounted platform things. I went so far on this path that I got a trailer hitch installed. But every carrier I looked at, caused problems with the taillights and the backup cameras. And I like my backup camera! I don’t want to give it up! Not to mention these things were all as expensive as a whole new wheelchair.

This is when I found a chair called the Robooter. The Robooter has a phone app to control it. You can use the app to fold it down into a turtle shape, and then use the app to drive it away, park it in some corner under a table out of the way. I thought, great, I can use that functionality to drive it up a ramp and into my hatchback car! I have enough mobility to place a lightweight ramp and do that! So I ordered it.

Unfortunately it did not work.

The first problem was the tip over wheels at the back. Most power chairs have these, they are a safety thing to prevent you going over backwards if you do something really stupid. Well, these fouled at the start of the ramp, and lifted the drive wheels off the ground.

We removed them, and the chair was then able to get onto the ramp. But it turned out there was an internal gyroscope that detected a too-steep climb. The speaker in the chair yelled TILT! TILT! and the chair refused to go.

I spoke to support and they recommended a longer ramp. But a longer ramp is harder for me to manage, and hard to fit in the car.

It was easier for Steve to put the Robooter in the car without a ramp, than my old power chair. So we carried it around a bit and tested various things. And I drove it around, inside the house and in my neighborhood. There were a lot of things I liked. But several real dealbreakers.

The safety gyroscopes were upset by the curb cuts leading to crosswalks. They would bring the chair to a halt as I was crossing the street. I could push buttons and make it go again but I did not like being motionless in the middle of an intersection with cars coming at me.

And even when the safety mechanisms were not giving false alarms, the chair was too slow. I don’t expect race car speeds or even bicycle speeds. But it couldn’t keep up with friends who were just walking.

It did not steer well over thresholds and rug edges, and this made it a terrible chair to use indoors.

But the biggest dealbreaker was that while trying to maneuver in tight spaces and very slow speeds, there was a gap between when the brakes released and when the motor kicked in. I was crossways on a sidewalk trying to back up a few inches so I could finish a U turn. Moving the joystick very gentry so as not to overshoot the edge of the sidewalk behind me. The brake released and the motor did not kick in. And the chair rolled forward and almost dumped me off the curb.

This was the last straw. I sent it back. I am super sad because I liked the Robooter in so many ways. It was beautiful and comfortable and the app control has so much potential. But it had fatal flaws. If they release a new version I will be first in line to try it.

Once I got my refund from Robooter, I ordered the Sinceborn rollator power chair. This was just like the rollators I currently carry in the car. Folds the same way. Four wheels and handgrips with brakes, and a seat with a backrest to sit on when tired. All rollators have these things. But to this basic design, the Sinceborn added footrests, which turns it into a wheelchair. And hub motors in the two rear wheels, with a joystick control.

I thought this had great potential. It could fold up and be placed behind the seat of the car. Much heavier of course, but not unmanageable. Pull it out, use it as a rollator to get over any awkward curbs or steps or door thresholds that would defeat a normal power chair. Then once you get to the flat space, sit in it and drive it around. With the small wheels it would probably not handle too well, but anytime it didn’t work as a chair I could switch back to rollator mode.

Well, it did not work at all, anywhere. On any surface less flat than a just-Zambonied skating rink, one or the other rear wheels would lose traction and it became impossible to steer. This effect was so extreme that I got stuck on the flat perfect floor of my garage. You can’t even see the imperfection in that floor. When I tried to drive it down the sidewalk it instantly tried to dive off into the grass. And it could not go up a standard wheelchair ramp or curb cut, it lost traction. The wheels are too small, too hard, and the hub motors had so much torque they just overwhelmed the wheels. And fifteen minutes of attempted use, wore a lot of plastic off those wheels!

I sent it back.

I think it might do better with pneumatic tires instead of the solid plastic ones. Maybe someone else will steal the idea and do it better.

My quest continues.

I have not posted about this in ages. TLDR is: My mom has moved to residential care and it looks like she will remain there.

The long version…
My dad decided they would drive to my sister’s house and stay there for a month, to see his eldest granddaughter play in some tennis tournaments, then graduate high school. Four days of driving each way! And he managed to do this trip. But it did not go well for him. Lots of challenges which I will not get into here since it’s not my story.

They arrived home on a Thursday. By that Saturday my mom was falling every time she got up, all the while insisting she was fine. To her, every fall was the first, and previous falls were forgotten. On Sunday they had plans to go out to lunch with another couple. My mom was still insisting she was fine, and she wanted to go to the restaurant. (Restaurant meals are her very favorite thing, and have become the only thing she wants.) It took all three of them to put her in the car, and all three of them to get her into the restaurant. Where she refused to eat, and sat with her eyes closed, still insisting all was fine. All three together could not get her back into the car. They finally called an ambulance.

My dad thought she had had a stroke. My aunt thought she was dying. But it turned out to be a massive UTI. The hospital gave her an IV and by the time I got there she was her usual querulous self, wide awake, eating hospital food, and asking when we could go to a restaurant.

They kept her in the hospital for three days, then discharged her to a rehab facility for ten days. Supposedly they were going to get her back on her feet and walking. But that was unsuccessful. Unable to walk, she cannot go home. Home has stairs, way too many trip hazards, and no handrails. The casita would not work since the bathroom is too small for a wheelchair and too small for a second person to help her in there. She needs more physical support than family can give, and even my dad has to accept that.

My dad found a long term care place for her, but insurance kicked her out of rehab before the long term care place was ready to accept her. So he tried to take her home. The people from the rehab place put her in his car. He drove her home, but could not get her out of the car on his own. Eventually she started freaking out because she needed to pee. At his wits end, he drove to the long term care place to ask them to take her to the bathroom. They did, and then they accepted her a day early. The holdup was because they were not yet prepared to administer her medication, but the room was ready so they agreed to let her stay. He came back to give medication each time a pill was due, until they got things sorted to administer it.

She has been there two weeks. The place seems pretty good. Clean. Lively. There is a guy that reminds me of a camp counselor. He keeps up a whirlwind of activities and makes sure everyone is included. They have enough staff to help my mom, who has not walked since her ambulance ride. She has no idea what’s going on. My dad is faithfully going there every day. This facility is not trying to make him stay away. And he has learned from the prior facilities, that saying goodbye distresses her, and that he needs to leave more stealthily. So things are going more smoothly this time.

My dad requested some items of furniture from the casita, to furnish her room in the care home. The small loveseat, the new chairs with the arms, and one of the rugs. Their grandchildren helped us load the things, take them over there, and unload. The facility has provided a hospital bed, since her mobility is so terrible. Their church provided a wheelchair.

We may be reaching a new equilibrium.

Since my dad won’t keep my mom in the residential care that she clearly needs, and won’t hire home help, I told him we need to create a better routine. So, they come to our house on Monday, and leave Wednesday before dinner, because it’s bike night on Wednesday and we want to be free for that. On Tuesday from 9:30 to 2, my mom attends an adult day program in Chelsea. We take her there, and my dad picks her up. We have dinner with them and play Rummikub afterwards, on Monday and Tuesday evenings. On Thursday from 11am to 4pm, my mom attends an adult day program in Kalamazoo. My dad drops her off and picks her up. On Thursday afternoons we drive out to their house and do damage control for a couple hours while my parents are absent, then have dinner with them there. My dad has to cope on his own, on Friday through Sunday. I can’t say he copes well, but it’s his choice to suffer.

It took a few weeks to get this routine smoothed out, but it has run reasonably smoothly for the last few weeks. And we seem to be making some progress against the squalor at their house. We have done a huge amount of laundry. So when my mom inevitably intermingles her clean and dirty clothes, then dresses in random things, they are mostly clean. I put out one complete set of clean clothes in the casita before they arrive, and hope she wears some or all of it. Then while she is at the Tuesday program I go through her suitcase and wash and replace things as needed, and set out another outfit, so she will hopefully wear clean clothes on Wednesday. I can rarely persuade her to bathe, but getting her into clean clothes helps.

Thursday before last, while vacuuming, we found her diamond engagement ring that had been missing for a couple of years and given up for lost. The wedding ring and the engagement ring are stuck together so this is both of them. She has been wearing a pieces of wire as a place holder. It turns her skin green. Anyways, I had the local jeweler measure the diamond ring, then put it in a safe deposit box at the bank. With it out of reach at the bank, I can tell her it is found, without her taking it and hiding it again. She will be thrilled to know it was found, at least, until she forgets. And since I now know the size, I have ordered some inexpensive plain wedding bands to fit her. I will give her one to replace that piece of wire. And give her another when she loses the first one.

She has been falling. She is bad at sitting in chairs. She turns around and sits on the air next to the chair, and tumbles to the floor. The chair goes flying. So far she hasn’t gotten hurt, herself, but it is super hard to get her up, and once she broke a window by knocking the chair into it. And she won’t STAY in her chair. Every two minutes she is standing up to do something stupid, like carry a candy wrapper to the trash can, then go back to unwrap another piece of candy. My heart is in my throat every time! So I have bought different chairs for the casita. They have arms, rounded edges, and are light weight. The arms guide her to sit on the seat, and give her something to steady her when she stands up. And if she knocks a chair over, it is less likely to hurt her. Or break a window. As a bonus, these chairs are comfortable, so my dad doesn’t object to them.

Every Thursday we are confiscating a few more things. Because their life will be easier with less clutter. This week we took an entire garbage bag full of mismatched socks. Now they have laundry baskets they can put stuff in! Today I sorted socks. I found fourteen matched pairs in decent condition, and pitched most of the rest. I would have pitched all the rest except I am sure there is still another garbage bag of socks over there to collect.

Next I want to start confiscating clothes my mom shouldn’t wear. Like, pants that don’t stay up, jackets with broken zippers, shoes with holes in them, etc. When it finally warms up I want to put all her winter things away, and then in the fall give back only the good things.

This morning I woke up feeling weird. My lungs hurt when I breathe in. I actually went to ER. They ruled out a lot of things, EKG, CAT scan, chest X-rays etc were all normal. They gave me an albuterol inhaler prescription, told me to follow up with primary care, and sent me home.

Meanwhile we are having elevator problems. It keeps stopping and giving a code that means someone hit emergency stop. Wiggling the emergency stop switch does nothing, but bouncing in the cab sometimes helps. The elevator company can’t send anyone until Feb 23. I am going to see if I can find someone more responsive tomorrow. In the meantime Steve is troubleshooting. Maybe he will fix it. One thing we have learned from eight years with a residential elevator, is that they are actually fairly simple, and the parts are often generic.

In happier news, the cats are getting on great. Curling up together, washing each others ears, wrestling and chasing each other without any hostility. Best cat pairing I ever had.

Clara has picked up an A on the end of her name, because you need two syllables to work with nicknames. Such as “ Clara The Culprit”. When Christmas ornaments are found in remote corners, we know who the culprit is.

The Popur is working very well. Both cats prefer it. I have set it to automatic. No issues. However, the app periodically goes offline and it won’t cycle until I reconnect it. Makes me worry what might happen if the mothership goes out of business.

Three care homes, hundreds of phone calls, days and days spent filling out forms and playing phone tag, tens of thousands of dollars paid out. My mom is still not in memory care and I am just beaten. I might as well just sit on the couch growling at anyone who tries to fix any of this, and silently letting the constant questions wash over me, like my dad does, for all the good it does anyone.

I have a friend I was hoping would adopt a kitten. He used to have two cats but was down to one. Well, his remaining cat died a couple of weeks ago, and he decided to adopt all three kittens. I was thrilled to find a home where they could stay together. He picked them up Friday night. They were nine weeks old. Preliminary reports are good, he says they are settling in well. I miss them a lot.

Clare, the mama cat, was spayed last Monday. We were having a really hard time keeping the cone of shame on her. And the cone doesn’t protect the incision from the kittens, who were still here. But I have found a solution. Did you know there are cat onesies? Dozens of choices on Amazon. They protect the incision but still allow the cat to use the litterbox on their own. I ordered several different styles and sizes. The one that worked best, is striped like Piglet’s shirt in Winnie The Pooh. So Clare has collected her first nickname. She is wearing it right now and tolerating it well.

She and Scotty are continuing to get along well. They play nicely. She headbutts him often, and he doesn’t always take kindly to it. But when she was loopy from the meds, he licked her face several times. I have high hopes for the pairing.

It’s amazing the size difference. He must be twice her size. But he is the one who retreats.