I have never been fond of social networking. Way back in 2016, I wrote an article for the Jerusalem Post entitled Love, Pain and Friendship on the Super Highway, about the superficiality of the communications on Facebook and its competitors.
Everything that I said in that article, still stands, and yet I too can be honest when facing the exception-to-the-rule. I have discovered, along with thousands of others, that there are excellent “groups,” which one can join, on Facebook. Some are quite valuable. In exploring those which are connected to care-giving and dementia/ Alzheimer’s, I have spent hours reading, and responding to, the concerns of family members taking care of a loved one with memory loss. People from all over the globe, communicating with one another about the difficulties they face from moment to moment. The spectrum of communications begins with the mundane, and ends with the sharing of a loved-one’s passing at the end of their very difficult journey. I do better, advising about living, than the alternative. If one takes the time to read the concerns of the members who communicate with one another, many valuable insights are on offer.
One prevailing problem which plagues families of loved ones with dementia of any variety, is the unwillingness of the patient to take a shower. It is seen by their family members as laziness, a lack of hygiene standards, and/or simply a combative response. Why is my loved one so intransigent? When Hubby went through this phase I was still expecting him to be able to care for his own ablutions. Hubby loved that word. It was so pompously British! He would have had it no other way.
Hubby’s avoidance tactics were so frustrating, that I began drawing a big heart on our paper calendar every time he was willing to enter the bathroom and face the ‘trauma’ of a shower. It was so concerningly infrequent. Hubby was adamant that he was always clean and that he washed himself properly behind closed doors.
This new challenge, among many other concerns was entered on the list I would hand to his geriatrician at our next appointment.
What is wrong with this man? Not only did he shower every day for over 47 years of our marriage, but he always commandeered the most gorgeous bathroom for himself, and I had the dumpy one. When moving to a new home, his bathroom was always redecorated, substantially improved with large showers (which he claimed were essential) beautiful sinks, and the best accessories. So why, suddenly, was Hubby unwilling to shower?
The Doctor appointment helped to put it into context. The process of showering is complex, although most of us take it for granted. One must remember how to turn the water on and off, how to adjust the temperature so that it does not come out too cold or too hot. One must know which soap to use for the body and which for the hair. All the bottles are confusing. One must remember to rinse the hair, and of course the body. One might slip from the soap underfoot. For a person with memory loss this confusion is absolutely overwhelming.
One member of an online group which I joined in order to participate in discussions of these issues, is a woman who has shared that she has signs of Dementia creeping into her own behavior. She shared a very personal moment. When the water in the shower pours down on her, she becomes terrified, and finds herself seated in the fetal position on the shower floor – arms wrapped around her knees. It is the position of someone who believes their life is at risk. She has no explanation as to why she reacts like this.
It does seem that this is a peek into the brain of the dementia patient. The connections of the brain which have been damaged, not only make it difficult for the patient to remember that which we all take for granted, but also can cause unwarranted fear, such as that of the perceived assault in a shower. Another member shared that because the skin of elderly patients with dementia can be quite thin, that the pounding of the water on their skin is actually perceived as painful. The added dimension of embarrassment and the desire for “body privacy” can further complicate the challenge. Some loved ones who will not shower, will also not allow another person to give them a sponge bath instead.
Two years ago, when Hubby fell and fractured his hip, we had no option but to hire a live-in-aide. Hubby could not walk down the stairs to the bathroom with the walk-in shower. His new aide improvised with a plastic chair, placed inside the upstairs bathroom, and a long, extended coil/hose with a shower head attached. Hubby was being showered daily again, and apparently loved it. He sat on the throne, much like royalty and everything was done for him. No decisions, no angst, no discussion. Even with a floor drain, the water did end up everywhere. It even seeped from the bathroom tile into the carpeting in the hall-adjacent, but it was a small price to pay for the joy of cleanliness!
To this very day, Hubby is showered six times a week. We retained the plastic chair, but moved to the downstairs walk-in shower with sliding doors. Both he and the aide are given a reprieve on Saturdays, as it is her day off.
When a reader wrote to me recently about her problems getting her client to shower, I came up with this suggestion: Tell the client that someone is interested in dating her/him. Buy a new bottle of perfume and tell them that after you have helped them shower, you will spray them and they will smell delicious. Don’t worry about the story. You can embellish it any way you like. They are unlikely to remember it… but they will long remember their lovely new fragrance and clean hair!
For those thousands of people who write into different groups about the problems getting their loved ones with memory loss to maintain some standard of cleanliness, there is one additional suggestion: Either help them to shower, or find a professional who will know how to make the experience a simple and pleasant one. Once they rebel, they are telling us that they are unable to deal with the stress and fears that showering conjures-up in their mind. Reducing our expectations of our loved one’s ability to function independently, is no longer an option.
There are reasons why dementia sufferers are obstinate, and we have no choice but to untangle the threads of their confusion. We do this so that their lives will maintain a standard of self-respect, and by extension, ours will as well!