03/31/2023

How do you bathe someone who is screaming for help at the top of their lungs?

Hygiene and the elderly especially those who suffer from Alzheimer's is something that has to be thought about and is a very personal decision for all caregivers based on their own capacities. I say this because not everyone can bathe a person or clean them after they use the bathroom. As the disease progresses and they age giving showers, doing hair, brushing teeth among other things becomes very difficult. I can only speak of my experience with my mother, but it is a subject that I believe is important and needs to be considered by everyone especially because as a caregiver we are also responsible to allow the person to maintain their dignity.

My mother Elda was a very elegant woman, even if she was only wearing jeans. Ever since I can remember she went every week to get her hair done, was always dressed nicely, bathed every night before bed, and took very good care of her skin. When the first serious signs of Alzheimer's started to appear also came the obsession with her hair. She was living in Florida at the time and the heat wreaked havoc with her hairdo, it simply did not last during the week like it did in the cooler weather up north. My sisters decided to stop taking her to the hairdresser for various reasons and not being able to have the hairstyle she was accustomed too; she became fixated with hairspray. She was continually in the bathroom in attempts to style her hair. There were times when she walked out of the bathroom with her hair flattened to her head from the amount of spray in it, yet she didn’t notice that. We hid the bottle of spray because she was damaging her hair and it became dry, brittle and very thin. Unfortunately, she went crazy searching for it, so I filled a pump spray bottle with water, and she used that thinking it was her spray.

Since I have been with my mom, I have tried to set her hair like she did when she was young (she told me how to do it, and I watched her millions of times). I am by no means a stylist when it comes to hair and unfortunately it came out frizzy rather than curly, but she was happy to have her hair done (I often thank God, she really wasn't able to understand how it looked or she would have killed me). When we moved to Italy, I began curling it with a curling iron and after several cuts it looked much nicer; it took three years for her hair to become healthy. Quite frankly now to see it is naturally without some type of set; I am pleasantly shocked it is beautiful. My father would have loved it! He always wanted her to leave her hair natural. My mother still to do this day, less and less, will try to do her hair on her own. Sometimes she uses a comb, sometimes a nail file or a pen whatever is in her reach at the time; no matter what I encourage it. I want her to always feel like she has control over herself as much as possible.

Aside from a nice hairdo the bigger issues arrived with using the toilet and bathing. I have chosen not to put my mother in pampers all day long. I am a 24 hour a day caregiver. I have an aid only for 6 hours a week. I made the decision not to use diapers for my mother because I would never know when she went to the bathroom, and I did not want her sitting in her own urine risking infections and also smelling badly. I personally prefer to change her pants, change the couch cover and anything else where she might have an accident. She uses an absorbent pad instead and quite frankly the benefits I have had with this are: while she may not get into the bathroom in time 80% of the time she knows she needs the toilet and lets me know, she gets nervous when she feels wet so it is a sign for me to check her, if I see her fidgeting or trying to get up it is often a sign she went to the bathroom, is embarrassed and needs to be changed. It is my belief that the use of an adsorbent pad has also helped her to be responsible, to a certain degree, for her own needs. She does however, as of the last two years, use diapers at night because she no longer wakes up to use the bathroom. I will also put them on her if we go out so that if we cannot get to a bathroom and she has an accident she does not have to feel embarrassed. And yes, she gets embarrassed. Not long ago we were out, and she had an accident, she suddenly got nervous, and we left because she started acting very strange. As soon as she stood up, we saw that she was completely wet. Her nervousness came of out fear and embarrassment. I do not want her to feel that way ever again in public, so it was a lesson well learned for me.

When it comes to bathing, I have also made very personal choices. The elderly in general begin to hate showering. They do not like the sensation of the water on their bodies, the water is too hot, the water is too cold. Add to that discomfort a disease such as Alzheimer's brings since you cannot explain what you are doing or what is happening, bathing can become a nightmare. I have a huge shower that I can put a chair into and still have room for myself and my mother. Getting her into the shower itself was never a huge problem, however, the minute the water went on she went ballistic. Prior to having the chair, I had to hold her wet body to try to bather her and hope we didn't slip when my mom began to fight me. I got the chair for security reasons, and it is a huge help. The one negative aspect is that it gives my mom security and freedom to use her arms and legs to fight me off while I try to bather her. The doctors suggested a sedative, but for me that was not an option but more of a dangerous risk. I need her help to get in and out of the shower and do not want to risk her falling, because she is under the effects of a sedative.

Not bathing her was never an option, and sponge baths just do not work long term. Last year I created a few booklets in order to encourage her to do things, be happy etc. At the time I also decided to make a booklet about bathing. Every time I wanted to give her a bath (and still do) I read the booklet the day before over and over all day long. The next day when we get up, I read it again and leave it around so she can look at it. When I am ready, I tell her it's bath time Elda, (the book title), let’s take a bath like the babies and she goes willingly. She still complains but not much and there is no yelling or physical objections. That was my solution and fortunately it works like a charm. I have found this obstacle like a lot of others I have encountered can be worked around with continual repetition. I am able to direct Elda into doing things she has forgotten how to do or doesn’t want to do with this method, and I use my booklets to help me. It is work, but it is also a pleasant way to pass time together reading, being animated and laughing. My booklets are available in our store. They are downloadable personalized pdfs.

Another issue is cleaning her ears. My mom wears hearing aids and has a lot of wax build up. I cannot longer take her to an ear doctor because I have to hold her head while he is trying to clean her ears and it is way to dangerous. Unfortunately, they have to be cleaned. I cannot clean them as often as I would like but I have found that using ear oil to soften the wax helps a lot. I have been able to keep them open and at this point, for me, that is enough.

Ingrown toenails are another huge issue. The last time I cut her nail it got infected, so I had to have the nurses come to the house for a month and treat her foot. She gets ingrown toenails often and staying behind them is not easy. I prefer to have someone else cut them and will still bring her to have them done. Let her scream at someone else while I try to distract her!

The most current problem I am having is during the evening when we change into pajamas and brushing teeth. After dinner and cleanup is when we get into our night clothes, but the transition from eating, cleaning to changing has become a problem. I liked the fact that Elda helped me in the kitchen to clean after dinner. It gave her time to move and digest and of course feel useful. We used to eat at 8pm, I have backed it down to 7pm because mealtimes and eating can be difficult as well. I want her to have time to digest before bedtime. Oftentimes when we go into the bathroom, she will still be in cleaning mode, so she wants to wipe the sink, toilet or whatever is near her. I try to sit her on the toilet as quickly as possible (that is where I change her because she can go to the bathroom and is seated). Lately she yells at me and refuses to take off her clothes. On occasion it becomes a tug of war! Getting her bottoms on is easy but when I have to pull a sweater or shirt over her head, she will pull them back down and often tries to bite me. Eventually she gets changed but believe me I have had to leave her sitting there on numerous occasions half-dressed because she refused to put on her pj's and I did not want to fight because in those situations she becomes physically aggressive.

Brushing her teeth, something we never had a problem with, is now also a difficult task. Honestly there have only been a handful of times she refused to do it. However, the problem is she refuses to rinse the toothpaste out of her mouth. I always brush my teeth with her to show her what I am doing without actually telling her because she does not like to be told what to do. Elda is a talker so many times she gets distracted because she has something to say or something she thinks I should be doing that I am not. On the occasions where she hasn’t wanted to rinse her mouth, I have tried to bring water in my hand to her mouth. Sometimes she takes it and sometimes she gets violent and tries biting my hand. I have slapped her mouth out of instinct and reaction. I do not find that acceptable, so now I do my best to convince her by showing her how I do it, trying to show her the water or her face in the mirror then I have to let it go. It's a battle I won't get into any longer because my bathroom is a dangerous place and I do not want risk her falling or me hitting her out of rage because she bites or hits me. I just wait and once we are safe on the couch, I give her a cup of hot tea to wash it down with. Fortunately, it is not something that happens often, but it is something I need to reflect on as a potential problem and decide how to keep her mouth clean.

I am sure others are facing similar problems and would love to hear your experiences and how they were resolved, if they were. As a caregiver we never know what to expect or even how to handle these new situations, and it seems as soon as we are accustomed to them, they change, and we are starting a new battle. As always, I talk to people about it, that is my only outlet and I believe it has kept me sane and focused. Please feel free to contact us or share your experiences.