Wheelchair: Kids loved It; Mom Detested It

As much as my mom detested our suggestions that she might benefit from the occasional use of a wheelchair or a walker, my kids loved having the medical equipment around. The contest for months was who could balance the longest on the back wheels of the wheel chair. My youngest child thought that taking a ride on the walker should be his right. But my mom treated the equipment as a concession to her declining health. We compromised for awhile by taking walks with an empty wheelchair. When her legs got tired, she gladly took respite in the chair.

After one particularly bad seizure, the one that put her in the hospital and then temporarily in a care center, she used the wheelchair often, even around the house. I had her use the wheelchair each week at church simply because her balance was precarious and her energy level unpredictable. After the third week, I was helping her out of the car with the chair waiting for her, and she said, "I am not using that." I put the wheelchair back in the trunk, and she walked into church. Taking medicine and using medical equipment were my mom's sticking points; she hated to be dependent on anything or anyone.

Some of the equipment we found most useful early on were handrails in the bathroom and a raised toilet seat. The walker was never great for us. First my mom refused to use it and then she just lost the mental ability to know how to manipulate it. ie. hold on and move it forward. Shower seat has been great.

Incontinence part 2: The Nitty Gritty

I tried to be discreet in order to maintain my mom's dignity. I felt that she wouldn't want other people to know that she wore briefs or needed help, so I quietly did my job being careful not to talk even too much to my mom about needing to wear briefs. (I learned to call them "briefs" at the care center. "Depends" of course, is a brand name so it doesn't always apply, and there was no way I could call them diapers especially when talking to my mom.) So you can understand my mortification when my three year old looked up at my mom and said, "Grandma, you stink. You need your diaper changed." How could I chastise him? He was right, and we had said it a million times to him. I glanced at my mom to see her reaction; I don't think it even registered. That is how far gone she is at this point.

Now the Nitty Gritty:

When I was bringing mom home from the care center, I asked the CNA how often I should be changing her. She said that a general rule of thumb was every four hours.  I found, however, that just like with a child it varies, and you sort of learn as you go.

I found that it was helpful to keep gloves, perineal cleaners, adult wipes and a barrier cream next to the toilet. The skin can be tender and the cleaning and barrier creams really help.

There are tons of different briefs. I tried several to find what worked best for us. Some of your choice will depend on if accidents are occasional or regular. Also, how do you put them on: lying in a bed, standing or sitting?


This aspect of care taking, as I said before, is huge. For me, it was terribly uncomfortable, at first. As the disease progresses the task grows in magnitude and becomes one of the the more time consuming parts of care giving.  My three year old summed it up when he said, "Mom's [job] is to make it so Grandma doesn't stink." It is not a glamorous job.

Incontinence Part 1: Talking about It

It's an issue no one really wants to talk about. Certainly, no one wishes their loved one to face incontinence issues and no one wants to deal with them.  In fact, I'm guessing that most people who dare click on this post are those who are facing the daunting task of dealing with the caretaker side of incontinence and all the appendages that go with it. And to you people who are there, you don't hesitate reading this at all because quite honestly, as my mother lost her ability to "stay dry", my job grew significantly, and I welcomed tips and suggestions on how to deal with things.

First of all, if my mom weren't suffering from Alzheimer's, I am guessing that this would be a different conversation. If her brain were working, it would not have been left to me to explain that she had a problem that needed to be dealt with. The road to incontinence, in our case, was gradual.  The first issue was that she was not cleaning herself well after going to the bathroom.  How in the world do you say, "Mom, I think you aren't wiping adequately?" and worse yet saying, "Mom, do you need help?" Aaauugghh!!! That was awkward and didn't go well. She was indignant and declared she was capable of taking care of things herself. And I didn't push it because quite honestly, it was not something I wanted to be doing either.  I re-think how that could have been handled better and I still don't know how I could of done it differently.  We continued in status-quo, and I would just sometimes pull her aside and tell her that I could smell something then she would, occasionally, let me help her change.  She didn't need briefs (Depends) at this point at least not often. Only on a rare occasion would she have an accident.

We then had a unexpected shift. My mom had a seizure, the first seizure she's had in her life.  The seizure was bad enough to put her in a hospital and then into a rest home for 6 weeks.  While she was there, she was kept in briefs and was assisted with "toileting".  When I brought her home, we just maintained the routine that had been established. She was relearning to walk, so I had to help her anyway.  That was almost 2 years ago. Although our routine was established at that point, she still, often, expresses dismay that I am helping her with such a private issue.

Two year old And Seventy-seven year old

Fall 2011: My youngest was barely two; my oldest was just shy of seventy-eight. That was when we moved Mom into our home. Experiencing daily life with my mom amazed me--in a sad way--but amazed me nonetheless.

Initially, I felt like my mom was above my baby in her ability to reason, in her motor skills and even in her speech, but not by much. I was amazed at some of the similarities they had in their behavior. Sometimes she would take food off of his plate, and he would scream. Then she would shush him and say "no, no" because she didn't like the scream. I found myself mediating between my mother and my two year old. It was a bizarre feeling to be explaining to my mother that my toddler was upset because she had taken his food. Sometimes I'd even take the food from her, return it to him, and go get her something instead. She would shake her head as if I were the crazy one.

Mom at my 2 year old's birthday party

Two years later, it has been amazing watching their abilities become more and more equivalent and then, eventually, watching his surpass hers. In my mind, I see it as a graph. My mom's line descending over time and my son's line ascending. At about 2 1/2 years old his line intersects with my mom's. At that point, his cognitive and motor skills begin to exceed my mother's.

Several years ago, I watched a movie, The Curious Case of Benjamin Button. The premise of the movie is that a man is born old and gets younger over time rather than older. At the time, the movie was amusing, but I have thought about it much more as I've watched my mom age and battle dementia. There is a disheartening similarity of the bell curve that could represent our cognitive and motor abilities throughout our lives. It makes me want to seize the day while I'm at the high point on the curve. I guess that played a part in the "mid-life crisis" that I started on my 41st birthday.  That is fodder for another post.

To Drive or Not To Drive

Clues that perhaps driving should be taken off the table

• You keep getting lost going to your daughters' homes that you have been to hundreds of times
• You not only leave your car keys in the ignition, but you leave the car running in the grocery store or church parking lots
• You back into your daughter's car and then can't figure out how to take the car out of reverse and put it into drive

Those were the big clues that my mom shouldn't be driving.  I know. Don't laugh. You would think that we would clue in earlier, but it is amazing how difficult it is to say to a parent that it is time to stop driving. It is such an affront to their independence. The last item on the list was when I finally called my siblings and said, "She can't drive anymore."  We were fortunate that she lost her keys the next day and no one ever found them. We made sure that the spares remained "lost" as well. However, I did talk to her about not driving anymore and for several months after that, she was upset at me for taking away her ability to drive. She would shake her finger at me which, so far, is the most physical she ever gets in expressing her frustration.

I was at a stop light once with Mom in the passenger seat when I got rear-ended by an older woman. It was a gentle bump, but the woman put the car in reverse and then into drive and promptly rear-ended me again. I hopped out of the car and went to look at the damage. She backed up again, and while I was standing between her car and mine looking at the damage, she came rolling forward for a third bump. Fortunately, my son yelled at me to get out of the way. The woman could not figure out how to put her car into park.  She just kept oscillating between "drive" and "reverse"--how familiar did that sound? When I was talking to the policeman explaining that she clearly should not be driving, he patiently explained to me that, although he agreed, they couldn't take her keys away. She was not driving under the influence and the accident wasn't serious enough to do more than a citation. I was so grateful my mom wasn't still driving. The humorous part of the story (humorous now) was that my mom who was sitting in the car was irate, not because I had been hit, but because they would allow a woman like that to drive and they still wouldn't let her drive. My son said to her, "Grandma, they won't let me drive either" (he was 14) and she said, "What did they get you for?"

We probably should have taken her keys sooner. We were fortunate that there was never a serious accident especially with her driving that big, powerful Buick.

Mom versus Technology

Mom was determined to learn how to use Quicken, e-mail, and a digital photo organizer, and she wanted me to teach her. I didn't understand at that time what was happening inside my mom's head, so I spent hours and hours and hours and hours trying to help her learn how to use these programs, after all, Mom was certainly an intelligent woman and none of these programs were really that complicated--especially basic e-mail. I would come home and look at my husband and be absolutely incredulous that she could not remember how to open an e-mail. We often chuckled at how many times I had helped her go through the different processes, but there were also times that I wanted to pull my hair out after spending hours balancing her check book using Quicken when I could have done it in 10 minutes. It was such a challenge not to offend by taking over and yet not spend endless hours accomplishing simple tasks.

In hind sight, the clues to her diminishing mental abilities are obvious; however, at the time, we just thought she had a strange inability to understand technology. I mean, she never had mastered the VCR or answering machine. This really wasn't that different--but it was.

She would call completely frustrated with the t.v. or satellite company because the channel wouldn't change, and I would talk her through the process over and over again. "Is your remote on 't.v.' or 'satellite'?"  "Is the channel on your t.v. on 3? No--the t.v. not the satellite." "OK, mom, push on. What is showing on your t.v.?" and finally, "Mom, I can be there in 30 minutes. I'll come check it." And after ten seconds, the t.v. was "fixed" and my mom was gushing about how "wonderful" I was.  (Repeat every couple of weeks.)