Another OT by Patrick - Dancing With Dementia


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Patrick Sawyer

Originally California now Ireland
Topic Author's Original Post - Feb 13, 2013 - 12:54pm PT
NB I know that I do not contribute many climbing posts, and I was never at the cutting edge of climbing. But I still climb and have been since 1969 (I can still lead 5.9s, very sketchily, shaking in my boots.)

I do not mean to clutter up the forum with off topic issues. But this is an important book in my opinion. It tells it from the point of view of a sufferer.

For those of you who have parents/partners/friends with some form of dementia...

...I recommend Dancing with Dementia: My Story of Living Positively with Dementia by Christine Bryden

From the Amazon review. Though I could write my own review but I am only half way through the book. I had loaned it to John, the local public health nurse, who just finished an intensive course on dementia.

Bryden (an Aussie) was a was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences.

This book is a vivid account of the author's experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life nevertheless, and explains how professionals and carers can help.

Christine Bryden makes an outspoken attempt to change prevailing attitudes and misconceptions about the disease. Arguing for greater empowerment and respect for people with dementia as individuals, she also reflects on the importance of spirituality in her life and how it has helped her better understand who she is and who she is becoming.
Patrick Sawyer

Originally California now Ireland
Topic Author's Reply - Feb 13, 2013 - 01:07pm PT
Thanks Locker. Even though it is not about climbing, at some point many of us will have to deal with dementia. Climbers and their partners/friends/family are not immune to dementia.

I just thought that this is a good book on the subject that I should bring to people's attention.

Taco Standers, I promise, someday I will start a climbing thread.

Big Wall climber
Seattle, WA
Feb 13, 2013 - 01:35pm PT
No need to be sorry, Patrick. I for one am going to get that book and read it. My wife's mother has dementia and she is staying with us as we are her care providers. There is no money for a care facility or in home care provider. We had to sell her house and she gets social security. Luckily she has children that can give her care but as it stands we are trying to situate our lives so she isn't shuffled back and forth among siblings. The situation is difficult and emotional and unpredictable, but it must be done. My heart goes out to you and anyone else that does this kind of thing. It is harder than any climbing I have ever done. As for the nay-Sayers, they can lick me.

Gym climber
Feb 13, 2013 - 01:36pm PT
Taco Standers, I promise, someday I will start a climbing thread.
Why? I think I speak for a "silent majority" or at least a lot of ST readers when I say that I have little to no interest in reading about mundane climbing experiences. I go climbing all the time and climb at a standard recreational level--it's absorbing to me when I do it, but I don't expect anyone else to be interested.
Hissyfits, meltdowns, good OT stuff--that's what we're looking for.

Mountain climber
The Other Monrovia- CA
Feb 13, 2013 - 01:45pm PT
Patrick, no worries, mate, a book on dementia could not be more appropriate here.
The problem is we just can't admit we have it.

Hang in there!
Patrick Sawyer

Originally California now Ireland
Topic Author's Reply - Feb 13, 2013 - 01:56pm PT
Wayno, it's not easy, what you (and others) are doing. I know. I have been doing it for about 30 months with Jennie. The confabulations, the 'anger', the sadness, the confusion, that dementia sufferers experience.

This book is a good insight from the mind of a person who is experiencing the condition... not that of a doctor, psychologist, psychiatrist, which all have an important part to play in dealing with the medical condition.

I can't really write anymore as I think reading the book says it all. My late mother had Alzheimer's, and it hurt when I would call California from Ireland and she did not know who I was, her youngest son.

But my brothers put her in a good home in El Cerrito, and at her funeral they told me she always had a smile on her face, and would even eat her meals. She was always peckish prior to her illness (she loved onions, but as a dentist, she couldn't eat them for fear of them 'repeating' on her).

Good luck Wayno.

Thanks Reilly, I was hoping it would resonate with some Supertopians.

Blahblah, I agree and sort of disagree, there are some great climbing threads on the Taco Stand. But climbing is not the be all and end all, at least in my opinion. I just get envious when I read and see some of the photos, of climbs and places I always wanted to go.

Then I have to remind myself, envy is one of the deadly seven sins. ;-)

Trad climber
portland, or
Feb 13, 2013 - 04:00pm PT
Patrick, for the most part, climbing is a selfish pursuit. Sharing about dimentia and other metal un-wellness is educational and theraputic.

My wife and I have been attending classes for the last 6 weesk that NAMI sponsors (National Alliance for Mental Illness).

My wife's son suffers from Bipolar Disorder, HDAD, and PTSD. He is now in the state hospital, after having representing himself at his trial, for which he was found (not surprisingly) guily. At the sentencing hearing, the judge (rightfully) ruled that he shold never have been allowed to represent himself, considering that his public defender knew about his conditions years before he was arrested.

People with mental illness (un-wellness) never get better in jail. However, they have a chance at living in society if they get treatment.

He has received medication in the hospital that has dramatically improved his condition. Yet he still claims he is not mentally ill.

The hardest part for these people is to admit they have an illness, like alcoholics. They cannot get better unless and until they realize and admit they have a problem, AND want to do something about it.

I feel for you and Jennie. Living with these affected loved ones is a life-long journey. We must be open, sharing and honest if we are to move forward. Keep your thoughts coming, and don't be sorry about doing so!
Patrick Sawyer

Originally California now Ireland
Topic Author's Reply - Feb 13, 2013 - 05:01pm PT
Clode, yes, it is difficult to try and explain to Jennie that she has a mental illness.

She thinks a glass of wine (which she doesn't get, and that is the difficult part sometimes, trying to change the subject from wine to something else, and can lead to 'arguments') will sort her problems out. She just does not get it most of the time, that she suffers from dementia.

I hope that your (stepson?) son is getting good treatment.

It is not an easy road some of us are traveling. But we have to do it, IMO.

Trad climber
portland, or
Feb 13, 2013 - 06:09pm PT
Patrick, my wife's son, "Al", I think is getting good treatment, but this is just to "stabilize" him so he can "aid and assist" at his sentencing hearing. What bothers me the most, is how will he cope, once he is released from the hospital? He cannot stay with us, because we can't trust him in our house when we are gone each day to work, and I don't know where he can stay, maybe with a friend, but will he be able to get the meds he needs? I don't know at this point. And if he goes back to jail, even with his meds, that is no life for him, he has said so, and we agree.

Since he won't accept he has "mental illness", my approach will be to talk with him about it as a "physical condition". His mother has a "physical condition" (hypothyroidism, for which she must take meds every day to live). I can also use other examples, such as my mother who has type 2 diabetes. It is a "physical condition", for which she is treated every day, to live. So hopefully he will understand this and will take his meds every day, to live.

The sad thing is many, if not most, people with these kinds of "conditions", take meds to the point where they feel better, then think they are "cured", and stop taking their meds, only to slide back into problems again. The reason they often stop taking the meds when they feel better is because almost all such meds have side effects that the patient does not like, so when they feel better, they are more than eager to stop the meds, so they won't have to experiencce the bad side effects.

It ends up being a toss-up: which is better, my life on meds with side effects, or my life off meds, with no side effects, but unable to function in society? These peolpe, when adults, can make the choice, we cannot force a choice on them, and sadly, they often make the poorer choice (in our opinions).

Big Wall climber
Seattle, WA
Feb 13, 2013 - 10:33pm PT
Wow. Clode, my heart goes out to your situation. I hear what you are saying and there is no easy answer sometimes but we must endure with all the love and respect that we can afford another human being and in the end that might not be enough and that is not our fault. We try the best we can and seek help where we can get it. "Endeavor to persevere."

Feb 13, 2013 - 10:40pm PT
Patrick, please keep reaching out. Life can be very hard sometimes, and all we have is each other.
Patrick Sawyer

Originally California now Ireland
Topic Author's Reply - Feb 14, 2013 - 06:08am PT
My closest and childhood friend, Brian (lives in McKinleyville), and his wife Cindy, a good friend of mine also, their son Michael (what about 24 now), is bipolar and has been in trouble with the law more than once.

They too are afraid of him living at home, especially if he goes off his meds, and their two daughters (younger than Michael) also don't like his presence. Both daughters are outstanding students. Michael was such a nice lad when he was young, but mental illness...

Social climber
Feb 14, 2013 - 07:01am PT
hey there say, patrick.... great share...
say, climbling is an extention in a way, of who folks are, in there inner man... they may climb for different reasons, but they all understand
the journey... and the climb, skills, and journey, all help
out in other life situations, exspecially, the 'long haul' tricky stuff, and unexpected issues that can arrise...

thank you for sharing... you been climbing through this, hard, and with grace.... may god grant you more grace, for those
times when you feel 'tapped out'--pray, then, have a moment
alone (or as i do, a moment with god)....

my twins buddies got through early onset-dimensia of their mom's--was ongoing for near 20 years? think it was... they in their sadness, learned a lot, and patiently endured...

in my, let's say 'circle' for now, me and some of us know a loved-one that is having huge mentle-illness right now, and the peson refuses all help, acknoledgment, and love... it is very sad, and breaking everyone's heart, as, they love this person, and many other younger lives are affected by this person, as well... the person would still have nearly a whole more half-a-life time of good life, if they's get help... very sad...

keep sharing, and hang in there, partrick....
friends are a wonderful anchor on that climb... and god is
the ultimate 'peace for the inner man' anchor, if you need that anchor, someday, as well-- :)
Patrick Sawyer

Originally California now Ireland
Topic Author's Reply - Feb 14, 2013 - 08:00am PT

Mead Hargis, one of the nicest climbers (and rangers) I have met. Alzheimer's-related death.

So young. Dementia sucks.
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