Tough day

Today was tough.  I can analyze. I can observe. I can report. But there is no escaping the emotional wrings that come, some days--some moments--more intense than seem bearable. This morning was that kind of emotional wrench.

I walked into my mom's room just as I do every morning and said: Good Morning, Mom! Ready for a new day?

I got no response; not even a look. I finally got her attention and then had to force her to get up and get dressed. She was barely walking. I practically carried her into the bathroom. She didn't want to get undressed (that's typical). She was constipated and needed assistance with that. By the time I got her back in her chair ready for breakfast, tears were rolling down my cheeks and the banner of thought scrolling through my mind was: Where is my Mother? Why is she like This?

(And in the background was my three year old pulling on me, demanding to be played with.)

There are days when I have to ask "How long can I do this?"

Not Swallowing Food (occasionally)

I have read that this is a symptom that comes in the later stages of Alzheimer's. For my mom, it isn't that she can't swallow. It seems, rather, that she simply forgets that she has food in her mouth that needs to be swallowed. She will stop chewing, pocket the food in her cheek and hold it there; however, when I remind her that she has food in her mouth, she starts chewing again, and generally, she will swallow. The most effective way to remind her is not with words but by putting another spoon full to her mouth. She doesn't take the new food because she realizes there is something in her mouth.  Only a few times has she spit the food back out.

The first time I realized that she was pocketing food in her cheek, I worried. Now, it is just another one of the odd symptoms of the messed up circuitry in her brain.

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.

My Children losing their Grandmother to Alzheimer's

There have been moments that scream louder than others that I am losing my mother and that my children are losing their grandmother.

Since my mom started to lose her speech early on in the disease, we often didn't know exactly what she was thinking. Shortly after my mom moved in with us, she looked at my second son and asked, "Now who are your parents? Where do you live?"  It floored all of us. Despite the decline that we had already witnessed, none of even questioned whether or not she knew who we were.Certainly, she hadn't gone that far, yet.  Although it shocked all of us, I think that it bothered my son that he was the one that she couldn't remember. It eventually moved to my third son, as well, and then to me.

Each of my children dealt with her differently.  My oldest, who happened to be the one that she remembered the longest, stopped engaging her much at all.  He had the most memories to lose, perhaps.  He had mowed her lawn for a couple of years. She had given him oboe lessons. He remembered her hiking and being active. Because he simply disengaged, I didn't realize the loss he was experiencing. I only clued in after reading an essay that he wrote about "something that was difficult in his life."  He candidly wrote about how hard it was to have his grandma move into our home and witness her decline.

My second son, the one that she forgot first, was gentle with her and made an effort to acknowledge her and to stop and talk to her.  One day I told him that it was a gift that he could still find ways to interact with her; some people are paralyzed into inaction when it comes to dealing with people in that kind of situation. He said, "Mom, it's hard for me, too. But I just make myself do it."

Son number three just didn't know what to say or do with her. Eventually, he has learned just to smile and nod his head. He is good about saying "hello" to her when he walks into the room.  He seems the least bothered by the situation. I wonder what he would say...I'll ask him.

My daughter who remembered fun play dates at Grandma's house became scared of my mom. It took a little training and coaching to help her feel comfortable around my mom. Now, (she's almost 9) after actively setting a goal to give Grandma a hug once a day, she likes to walk into the room and hug Grandma because it makes her smile. But the learning process is ongoing. Today, my daughter asked me, "Is it normal for Grandma to hold onto to my arm and not let go when I give her a hug." So a conversation opened up about how Grandma can't always control what her hands are doing.

And then there is my baby--currently, three years old.  He really doesn't know Grandma any other way.  He plays with her. He laughs with her. He fights with her. She is simply a part of his life. He is definitely the most comfortable around her--blessings of youth.

Am I Doing Enough?

It's the question that I constantly ask as a mother. It's the question that I ask as a wife. It's the question that I ask as a daughter. Am I doing enough?

Last night, my three year old laid on the floor outside my mother's bathroom door and threw a tantrum. "No, don't take grandma to the bathroom. Don't get grandma ready for bed. I need you to hold me." Tears streamed down his cheeks. In my head, I knew that he had been held many times that day. In my head, I knew that his dad was just upstairs and could easily be the holder. In my head, I knew that it was a tantrum. But my heart yearned to pick him up and wipe his overtired tears away and lull him to sleep. And that's what would have happened 15 minutes later, if he hadn't fallen asleep waiting.

My mom generally sits in one of two chairs throughout the day. She only moves out of them when I move her. She spends much of the day alone. I get her up. I feed her. I keep her clean and safe. But so much of the day she sits while I am attending to lives that are on a constant move. I feel guilt about not spending more time with her, yet I remind myself that she barely acknowledges me when I am in the room with her. I feel like I should get her out more, but in our hot desert climate, we have to be out by 7 a.m. to beat the heat. That isn't going to happen. I guess I'll put off strolls in the park until the weather in more cooperative. In my head, I know I am meeting her needs. In my heart, I yearn to give her more quality of life. In my head, I know that she doesn't interact much with people even when they are present. In my heart, I want her to feel companionship; I don't want her to be alone. Am I doing enough? I hope so.

My husband needs time--time with me. He is patient. He is easy to put last in line. After all, he isn't lying on the floor outside the bathroom door throwing a tantrum. He can feed himself and clean himself. In my heart and mind, I know this one needs more time...that's why I asked him out on a date tonight. :)