It’s strange how caregiving affects us. After I wrote the blog about Dad moving in with us last fall, I began to feel protective of his feelings and now I have become extra sensitive about ensuring his dignity is preserved no matter the price. As a result, I have found myself to be less than candid about what my husband and I are dealing with -not only as a couple but in terms of how we are adjusting to our new role independently. I’ve always been the person that tells you everything I know, but when it comes to Dad, I’ve become guarded. It makes me wonder if these are the same feelings shared by other families who have become caregivers, too. Many of these families have been accused of keeping caregiving problems with their loved ones silent or hidden, making it difficult to get help for them. In fact, I have made comments to other professionals that families like these are part of the problem because they are so guarded. If so, I want to apologize right now for being less than understanding when a family is struggling to be open about their needs. Like them, I have so much respect for my father that in some ways it would feel like a betrayal to share some of the details of this journey.
We really need to work on how horrible it is to make judgements about others with little or no knowledge of what’s really going on. No one gets help. No one moves forward. No one learns.
As most of you know, judgmental behavior toward people with dementia is the genesis of the development of the Virtual Dementia Tour®. It helps break down the barriers of judgment by giving people the opportunity to live in dementia even if for a short time. This eye-opening slap in the face has resulted in better care and the research we are doing to increase the impact and calls to action continues. Judgement of others based solely on our own expectations is a form of bullying.
Once Dad articulated why he couldn’t stay in “The Home” as he calls it, it made perfect sense. He said he was becoming institutionalized! The judgement of the staff was that, at his age (90, S/P CVA, cancer, vascular dementia), he needs help with everything. They were offering to cut up his food, walk him down the hall and do everything for him. When he became upset about that, they kept trying. Don’t get me wrong, I know the staff were only trying to help but at some level we need to pay attention to the abilities not the disabilities of the people we serve. He said if this had gone on much longer he would have been a drooling puddle of mess.
In an attempt to highlight his independence, Dad found himself trying to pitch in and help around The Home, such as straightening up, pushing wheelchairs, and arranging furniture for church to accommodate wheelchairs. He really loved helping and felt important and gratified by the comments from residents. That is until he was told he couldn’t help anymore. Rather than giving him something else to do they just told him to stop doing that. That’s all it took. He felt like he was fired.
There are books we could write about the impact of his experience but for now, we need to focus on the reality (not judgements) of what we think our elders are capable of.