If you are a caregiver providing support and care for a parent or loved one, then this blog post will confirm what you are already feeling. I want you to know that you are not alone. If you are a sibling or a relative who is across the country and only checking in from time to time on your parent or loved one, let me give you an inside look at differences in your experiences to those of the direct caregiver.
As you know, I am the primary caregiver for my dad, who has Parkinsons’ and Dementia. Every day that I visit him, and it is EVERY day, I am mourning him. From the time I moved him near me after he fell last summer and fractured his pelvis and, I believe, hit his head, he effectively passed away for me. The father whom I spend time with each day, is not the father I knew. Although from time to time he pops back in to show himself, for the most part, we don’t have many meaningful exchanges. His language is completely compromised and I spent most of my time being his advocate and making sure he is getting proper and appropriate care. And I make sure to show him daily that I love him and will protect him.
That said, I mourn for my dad every single day. It is an ongoing, dragged out sense of loss. Very different than one feels typically upon the passing of a loved one where the grief is overwhelming and complete. For me, it is a daily experience. When the time comes that he does pass away, for me, it will be a celebration. It will be a sense of relief. I know that no one, unless you have experienced what it is like to care for someone – on the front lines – you may not understand this. But it is real. Very real.
Improv? Yes. Now that I am extremely experienced in the world of Dementia, I have observed how important the skill of improv is to my interactions with my dad. A bit of background first…my dad not only has Parkinson’s Dementia but also has Aphasia, which is simply that the language center of his brain has been impacted. He can no longer communicate in a way that makes any sense.
For instance, this sentence may come out of his mouth “It was really interesting today. The thistle came out of a grain and was car.” Or, “did you see the biddle up the nickel?” Most of the time, I have no idea what he is trying to say to me. But he clearly thinks he is communicating something and would like a response to either keep the conversation going or to answer his question.
The technique I have used is very much improv at its core, which is based on the concept of “Yes, and?” Most of the time I answer with “really! Tell me more!” And that gets him to continue talking. I feel as if I can get him to continue to talk to me that is a win. He feels as if he is expressing himself and occasionally I can decipher what he actually means, through context, and we can have a meaningful exchange. Some days are better than others. In fact, one day recently, it was as if he had an awakening of sorts. He was making connections he hadn’t in awhile, remembering facts from the previous day, which is next to impossible for him typically and was able to talk on the phone with relatives fairly easily, again not typical. It was short lived, however, as it usually is, and the next day I was back to using my improv skills.
I am so lucky that my father has a pleasant personality, still smiles and laughs at himself and the staff where he lives generally enjoy him. That, unfortunately, isn’t typical with Dementia. I am hopeful that his personality will carry him through this terrible disease and that he will be smiling and laughing until the end