The more I can learn about what it’s like to live with dementia, I hope I can offer better care, service, and understanding to the people God has brought into my life who are affected by these “unspoken” diseases. Vicki, Bruce, Mary, Freda and other people sharing about their lives and supporting others through their online comments are indescribable gifts from God.
It’s important – essential – for me to keep remembering, though, that I’m not just trying to learn about dementia, but want to understand what living with these diseases is like. I need to reflect, to try imagining to the extent I can what it’s like inside. That way I can be a better companion for your journey.
I’ve been reading two books suggested by Vicki to help learn about dementia, especially people’s experience of having it. The first is “Still Alice” by Lisa Genova. Although it’s a fictional novel, it’s written to describe real-life experiences. The second book is “Dancing with Dementia” by Christine Bryden, who was first diagnosed with Alzheimer’s Disease and later re-diagnosed with Frontotemporal Dementia. Both of these are powerful descriptions of people living with dementia.
I found another recent book written by a person with Parkinson’s and Lewy body dementia. It’s “Life in the Balance” by Thomas Graboys, MD. From reading the Foreward and Preface, I can tell it’s another powerful story from inside a person suffering with dementia. Although this will be a long post, I’d like to share the opening paragraphs with you. I’ve been reflecting on these words – his what and why – since last night:
Nothing is second nature to me anymore. No task is too simple, no activity so routine that I can do it without forethought. Is the glass right side up, or will I pour orange juice all over the counter again? When I leave the kitchen to walk to the bedroom, how will I get there? At the party tonight, where will the stairs be, and how will I navigate them? Will I be able to join the conversation? Or will I be standing in a corner, nearly catatonic?
For social gatherings, I have what I call my cassettes: a repertoire of conversational riffs on various subjects that will allow me to enter the converation and, with luck, appear to be a reasonable facsimile of the old Tom Graboys. Can I pull it off? Can I act the part and mask the reality of dementia? One of my goals in social situations is to have people go away saying, “You know, Tom seemed pretty good.” It allays the anxieties of friends and colleagues when you look and sound good, even if they cannot fathom the effort it took to muster such a performance.
Without my cassettes, entering a group conversation is like trying to get on the freeway traveling at twenty miles an hour while the traffic is rushing by at seventy. Slowness, an all-encompassing mental and physical slowness, has descended upon me. It is not going to lift.
Again, it’s time to reflect.
Jim
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Thank you, James. We should start a book list; I would appreciate this one on it. Blessings, Vicki
I also thank you, James, for this post. I can so much identify with the author of that book. I’ve given up on my “cassettes” long ago and simply avoid most social situations. Besides not knowing what to say, there is just too much input (voices, faces, hands, arms, legs, movement) for me to process. In fact, its as if everyone and everything is moving and making noise at once and I can’t process it all and I can’t focus on just the one or two people I’m near. And I miss all the social cues the rest of the people use to interact.
That’s a long reply – what you posted really got me going. I’ll be it will be a good book. Thanks again. Peace, Bruce
Yes, thankyou for this.
Vicki, a book list would be good. Good idea girl!
Bruce, in our groups we have just a small number so that it doesn’t become overwhelming – would there be a support group like this in your area…..or a small poetry group……could you or your family inaugurate one. If you would like this.
Since many people find that some days are better than others,I would hope that maybe in the right setting etc.,the slowness this author speaks about would lift sometimes.
Maybe I am lucky in having cared for my mother and in having a strong local network thro’ volunteering with dementia carers and sufferers, so I have had longer to live with the idea.
Each person’s experience is authentic and should be heard – may we have better care,service and understanding thro’ this as is Jim’s wish.
We have to meet the person where they are.
Thankyou Jim, Vicki and Bruce and the authors.
Hugs to you all freda
I’ve wondered if we could try some electronic ways to meet one another, like Skype or the online meetings Webinar styles? Since the latter takes no access to a web cam, can use voice or laptop to interject comments.
If we had a webcam, what fun that would be! And James is such a ghuru.
So far, I am not finding much in the Lansing area: even tried AlAnon just for support, but it is increasingly harder to leave the home. Do you all have that ‘energy’ leak (or did they)? That’s my issue more and more.
Love back to you all, Freda, Bruce, silent guests, and James, Vicki
But we are in this same boat together, where we can laugh with are oars all a-kimbo, basicly
Hi Vicki,
I think my “energy leak” is a pretty steady flow. I live in Rock Rapids, IA where there are no support groups, no day programs, nothing. And since I don’t drive anymore, the only time I really get out is when my wife takes me to a Dr. appointment in Sioux Falls, SD – 45 minutes away. I’m intrigues by your suggestion of an online meeting of some sort. Take care.
Peace, Bruce
I am looking into webcam and Skype – not literally at the moment(!) – taking advice from a friend. Very wary of new (to me)’technics’!
Hugs freda
I think we can gently start using Skype to chat with one another by voice, text, and video if you’d like. We can probably try something later this week with at least a couple of people.
Some folks have mentioned online chats through other websites. How have those worked?
On Alztalk.org., click on ‘chat’ at the top of the page and then type in name and password and click to log in. There is a choice of rooms to enter. Times are listed above. Quite a group of friends are often chatting at, I think, 3pm EST (I’m not sure about daylight saving) and they are welcoming. There are others who chat later and sometimes a few who chat about 8/9 am EST.
It seems to work well when I have hit the right time from the UK!
On occasions it can be quite fast with a number of people, so a request appears on the screen to slow down – and there is a calm room for peace or one-to-one.
Hugs freda
Post about 2008 book I'm reading by Thomas Graboys-a person with Parkinson's and Lewy body #dementia http://bit.ly/bt5NwU Powerful