I cannot emphasize enough… remember who they were, and be present with who they are. And that will guide you in how best to proceed. It’s sometimes hit or miss. For example: Did they conduct meetings? Were they into event planning? Food presentation? A nurse? Who were they, at their core? Who did they spend their life being? The role they played at the height of, or for most of their life? This is the 'who' I interacted with in the beginning to get to the end result I desired, while at the same time being present with who they are. And in my experience, they became more of who they were, in any event, without the filter they used to navigate life.
As a result, I had meetings about events, pre and post, discussing flowers and catering etc. I had meetings about misc. business matters. I spoke in a language that bridged the divide of the space where they, my parent, a person living with dementia (PLWD) now 'lived" and my new reality, dealing with all the things. I generated minutes of meetings, set up for functions. Nurses became assistants. Whatever worked.
It’s all about life. And I chose to let them live, allowing them to be themselves, in a controlled environment. Everything in moderation.
It was literally a crash course in being patient, developing coping and management skills and discovering new depths of inter-personal skills... on the fly. In addition to managing life...yours, theirs, meal planning, exercise, the administration of medication, appointments, finances...everything.
I remember sitting in front of a parent who was clearly agitated and raging about something. I remember the shock and feelings of absolute bewilderment, while at the same time, scrambling through a book, inhaling the information (thank god for digital) on the situation before me at the time. My only thought was... How do I diffuse this?
It is a difficult journey. Period. I was going to qualify it by saying particularly so if it the parent in question is more challenging to deal with. But the truth is, it is an unkind disease. (As I would imagine is the journey of any disease of a loved one). It is challenging. On so many levels. At any point in time you are feeling a multitude of emotions. There is love. There is grief. There is frustration. Guilt. Anger. Resentment. Sadness. Conflicted. You name it. And you will experience it. There will be tears. You will want to scream...(and I found the car was the best place and space to really let it rip).
And of course this is easy for me to say… now. I get it…I am standing, mostly on the other side. It was and continues to be challenging. But it gets easier. For me, in the beginning, to be honest, it consumed my life… there were so many things happening at once. And here, I can easily say, particularly if dealings with the PLWD is difficult.
My two cents… If the PLWD, has a strong personality and is aware enough to know / intuit something is “off” then … it becomes a very interesting dance. For me, for us, in our family, we opted to remember the essence of who they were and for the most part interacted with those facets of their personality which existed prior to the diagnosis of dementia. Who were they at their core? We chose to see our parent’s experience as an evolution in their life’s journey as opposed to a deterioration. We saw them as themselves, exactly where they were, in the now.
At the end of the day, I believe this approach afforded the PLWD respect and dignity. And gave us opportunities to be present with what is.
That said, everybody's journey is different…even in our family nucleus…we each experienced the PLWD differently, and it was harder in different ways for each of us.
One of the things I heard early in my journey that I remembered was:
I had gone to an event and there was a lady there speaking who was a PLWD... And she said “you know one of the things to remember is that sometimes we actually know what we are saying. So don’t dismiss it.” And to be honest I didn’t always remember that. And sometimes they were telling you things.
PLWD adjust to their circumstances. Soooo they might sit quietly and not engage. It does not mean they are not listening. Be guided.
Be patient with yourself. With them. It is not an easy road.
At some point, I decided to see what was unfolding, as a gift. I met them where they were, and created memories. I chose to see every single day a new as a gift…of life, of opportunities to love and laugh, to care, to dig deep, to grow, to be more understanding, to be patient, to say good morning, and kiss each other good night, to hold hands, to listen to their stories, to hear their voice, to say i love you, to hear i love you, to hear their voice saying your name or...whatever, to see their smile, to feel their touch, to hug,...to just... simply have another day. And on the really good days, to connect, if only for a minute.
Be present with your parent. Make memories. This is the gift of the long goodbye...how do you want to live it? How do you want to remember it?
with love, and in gratitude
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