Tru here.
Looking at my wardrobe doors this morning reminds me.
Earlier this month I was standing in the bedroom wondering what clothes I have, and where they are located. Since wardrobe doors were closed and clothes were not visible at that moment, I was stuck. “Don’t worry about it; you are just over-tired.” Then it happened again yesterday — and I was not over-tired.
I remember the first time I was stuck on filling my cup of coffee. I was sick that day, and pictured mug full … but could not remember the first step for the process. I was stuck. That was the first time, and I rationalized that I was sick … and tired. But it happened again about a month later. And about a month after that it started happening every few weeks. Now it is every couple weeks and it is no longer so shocking. It is, however scary because I know the time will come when that will become my “new normal”.
The first dozen times when I realized I was unsafe to drive, I knew that I was over-tired. Made sense. Then the frequency increased and I realized I was not over-tired; it was just the way it goes. I gave up the keys until things changed for the better. When I got a tentative diagnosis I gave up my drivers license entirely.
The First time my cognitive abilities fail the task is usually when sick or extra tired … and it is shocking. But then it happens again … and then the frequency increases until it becomes my “new normal”.
This is my new pattern of loss:
Increasing frequency of loss.
Increasing intensity of loss.
Increasing experience of loss and grief (in order to bring) …
Increasing appreciation for the blessings of life.
This grief must be recognized and dealt with in healthy ways
in order to get past it
and CHOOSE to focus on the blessings of life.
Sometimes the first stage of this grief feels like fear or anger and I will get on my treadmill (which has extra-long support bars so that I do not need my walker) then after I have worked this energy off … once in a while … I cry. Sometimes I not only cry but I DESPERATELY cry, desperately pray, hug my big dog for long periods of time and go out with my pet chickens competing to sit on my lap. If these emotions hit late at night I will play my lap harp. If while I am in the car then I grab my stuffed animal off the dash and stroke it while the tears fall. It is okay to cry. In larger perspective I consider it renewing because …
Once I acknowledge and consciously experience the grief then, as they occur, I can use these events as reminders to find compensatory tools and strategies for self and others to live as well as possible with the time we have available.
… until the next round of grief comes due … then must experience it also, in order to get past it.
… I choose to focus on life’s blessings (and the blessing in opportunity of advocacy).
But in order to do that I must pass THRU and endure the grief.
Both are an important part of the complete process for keeping my life in a larger perspective.
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Healthline
Insightful and well written! Thank you.
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Thank you for your appreciation of this article. It is an encouragement. — Tru
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Once again a brilliantly accurate, insightful, and revealing blog post. Thank you for blogging. I know how tough it is. Your posts make a huge contribution. George
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George, Thank you so much for taking the time to read my blogs. Responses like yours keep me encouraged. — Tru
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Thank you for this. You have a great way of explaining how this disease impacts you in a way that is understandable and insightful.
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Elaine, when information in these articles helps others better understand symptom consequences, then everyone benefits. Thank you for your feedback. — Tru
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Tru, I’m sorry you are going through such a hard time, but I do thank you for sharing with us. You are so courageous. We will find ways to end and prevent this for future generations (I hope).
In the mean time, I do wish you the very best. I’m pleased you have your dogs and chickens to love. Animals are so helpful just by being themselves.
I’m sending you love and light and hope your faith will help with your grief. It’s good you accept it and not try to ignore it.
Thank you again.
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Ruth, thank you for your encouraging words. Yes animals ARE such a comfort. (( smile )) — Tru
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The lap harp is such a great idea! Did you always used to play it? Your blog helps all of us and is the voice of people who do not have that insight. It reminds carers that people with dementia are people first! All the little ambiguous losses make this journey harder, but you are a trooper because you are helping yourself by telling your story, which in turn, is advocating for others.
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I bought and began playing the “Nevel” (ancient instrument) about a year after tentative diagnosis. More about process at video https://www.youtube.com/watch?v=aub51qOyGtQ
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((sorry; hit “enter” too quick & do not know how to edit comment)) … A new tidbit of information has floated around & I may write an additional blog on acoustic vibration in connection with night terrors. I would encourage anyone dealing with dementia symptoms to try out an instrument tuned to “pentatonic scale”. Thank you for your kind words. — Tru
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Reblogged this on george rook and commented:
This is another wonderfully piercingly moving account from Tru, about how she (and others) is hit by changing or new symptoms, and how they start and then become regular. Hard to deal with.
I have experienced the same, though less. The other day I fund I could not access my knowledge about a particular subject and could not therefore talk about it and join in a discussion. It just had disappeared and I foundered. I was upset all day. Was it the start of another phase?
Read it.
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George, I very much appreciate your quality of writing and input. Thank you for helping to spread awareness about the challenges of new phases. — Tru
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