By Eleanor Pineau
Last week I wrote about an incredible PSW who truly takes pride in her work and shares her love with all she meets. Our interview covered topics such as: (1) how she came to be a PSW; (2) what the general work day of a PSW consists of; and (3) specific topics relating to dementia. In this part 2 of the article, we will discuss the topics relating to dementia.
And so the interview continues:
Tell me about the experiences you have with families who have a loved one with dementia.
“All families are different and unique.” Maryanne gave examples of the different types of families. Some families are always present, making sure their loved one ate, are dressed, engaged in activities, and so on. Some families even request staff to show the resident their photo when they go away. I think that this is interesting for 2 reasons. Why do they want their loved one shown a photo of them? Is it because they don’t want them to forget who they are? Or is it because they want their loved one to know that they care and love them and will be back? Or maybe both.
There are also the families who complain. But Maryanne believes that most of the time, these families just have a different way or a difficult time expressing their love for someone. She does however admit that there are the complainers and whiners.
And then there are the families who do not come at all.
The emotions families experience when a loved one falls ill with dementia are numerous and often conflicting. But what’s interesting is that so many different emotions can cause the same reaction. For example, a family member might visit their loved one because they truly love the person; they may visit them due to a sense of duty; they may visit due to culture; they may visit them because they feel guilty; etc. Although these emotions differ, the person still visits. However, you may be able to imagine that the atmosphere of the visit might change depending on the driving emotion.
I then asked Maryanne more specifically about families and their understanding of dementia.
“Most families understand what’s going on with their loved one with dementia but they don’t accept it! They know it’s dementia, and that they’re losing this and that, but they come to you and ask ‘why is my mom doing this, or doing that?’”
So if families understand what’s going on, but aren’t willing to accept it, how can we help them?
“I think they need support in order to accept it. Unfortunately the PSWs don’t have the time to help the families.” Having access to quality information and support at every stage of the dementia journey is essential to the emotional, physical, psychological, and social health of family members and family caregivers. Families should know that “your mother is at this stage and she will progress to this level, and then that level; her functions will be this, and the care will be that. They just bring them there, with no education or support. They need someone with the expert knowledge and someone with the experience to help them through it”
So where do families access this information and support? Do they have to do everything on their own in such a stressful and overwhelming time? Are the services adequate? You tell me in the comments below.
My next question asked whether she had some tips for people who are caring for someone displaying a behavioural problem.
Immediately, Maryanne replied with:
“Trust your instincts, use unconventional ways of caring for the person, and use an open mind.”
Maryanne told me a story about a man who had a very dirty mouth and would ask for sex every time a female PSW would walk into the room.
“So I walk into his room to get him up and ready for the day and he asked me for sex. I said ‘we will have sex after we go to the bathroom.’ He said ‘really?!’ And I said ‘yes, I promise.’ He got right up and went to the bathroom. For everyone else, he would fight them and wouldn’t go to the bathroom. They would have to do everything for him in there. As soon as I promised him what he wanted, he did it all, and I didn’t even have to help him. It was great. After, he forgot about the sex.”
What is absolutely incredible about this story is the feedback from the daughter. She told Maryanne, with tears in her eyes, that this is the first time that a PSW has not complained about her dad.
So you can see, that when caring for someone who may not be acting in the most socially appropriate way, that it is crucial to trust your instincts, use unconventional ways of caring, and have an open mind. After all, it’s not about you. It’s about making sure the person you are caring for is safe, happy, and has the best quality of life possible.
Another story Maryanne shared with me was about a man and wife living in the same suite, but in different bedrooms. The man would always wander at night and this made the staff very anxious about his safety and wellbeing, as well as the safety and wellbeing of the other residents. Maryanne analyzed the situation. What were the usual arrangements for this man and woman before they came to the home? And then the most obvious solution came to her head, that oddly enough, couldn’t be seen by any of the other staff. They rearranged the suite, put both beds in the same room, and now they shared a room at night. He never wandered again. You see, what was happening, was the man would wake up in the night, see that his wife was not beside him, so he would get up and go searching for her because he wanted to make sure she was ok. Now when he wakes up, he sees that she is right there in the bed beside him.
Again, in people with dementia, you need to look at what’s normal?! What were their routines before the disease? The solutions then come very easy.
To conclude our interview, I asked Maryanne if there was anything else she’d like to tell me. She left me with one striking statement:
“We care for animals, but we don’t care about the elderly. What does that say about us?”