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 Caregiver as the COACH 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Caregiver as the COACH
I spoke at a dementia and Parkinson's seminar for caregivers that I had organized for our community a couple of weeks ago. One of the key points I wanted to make with them was that each of us as the caregiver is a coach. The coach gets to decide who is on the team and what major plays will be made at crucial times.

So many caregivers feel at the mercy of their local doctors, who often do not know what LBD really is and does, and may not invest appropriate time in finding out crucial information to treat an LBD patient or support an LBD caregiver. As coach, you get to recruit and select your loved one's doctors, pharmacist, counselor, various therapists, and some of the alternative treatments that may help them with their symptoms. You get to hire and fire the doctors.

Just because someone has a medical degree does not mean they know about LBD or know how to communicate with and support you as the caregiver. I encouraged all attending to be encouraged to take the role of caregiver as coach seriously and act on it when you need to. Go out of town if necessary. Get online and research what you need to know and where the best treatments can be found.

My husband saw 12 different doctors before he was accurately diagnosed and given effective and compassionate treatments for LBD. It was a slog and took a long time. But the perseverance paid off in his care and in our peace at knowing he was receiving what he deserved and needed. I would do it again in a heartbeat.

Now, I need to be clear. In working with medical folks, gracious good manners will get you much farther than harsh words. But firmness of purpose, knowing your right to speak up and deny a treatment option when you have the health care Power of Attorney, reminding them of their promise to "do no harm" usually stops them in their tracks and gets their attention so they will listen to you.

Good coaches do their homework, recruit the best team members they can find and let them do their jobs, encourage good communication and team work, and call the shots when they have to without any hesitation or apology.

Becoming the coach empowered me to move out of the role of victim. LBD was a monster that wanted to devour me. I decided not to let that happen. Becoming the coach was one of a number of things I did to take control back in my life with John. It was the right choice for me. Maybe it can be a good choice for you, too.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Nov 04, 2012 6:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Caregiver as the COACH
What a helpful idea, Pat. I'm sure that people new to this journey can learn a lot about taking charge from your coach analogy! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Nov 04, 2012 10:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Caregiver as the COACH
Excellent point, Pat! And great advice.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 04, 2012 11:15 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Caregiver as the COACH
great point pat... thank you!!

coming in here often and sharing and learning, helps so much in your understanding of whats up and what should be.. it gives you the extra confidence and knowledge you need, to be that coach, for your loved one!!!! thank you all!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 05, 2012 1:31 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Caregiver as the COACH
Pat:

Reading what you wrote was so refreshing for me right now. I am so tired of doctors not listening to me. Thanks for writing such an encouraging post.

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Beth


Tue Nov 06, 2012 2:55 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Caregiver as the COACH
Thanks to all for your encouraging words back to me! :P
It helps to feel we are in it together, doesn't it?

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 06, 2012 5:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Caregiver as the COACH
Yes, we are all in this together! No one else could possibly understand, could they?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 06, 2012 6:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Caregiver as the COACH
Pat,
You bring some really good points to the tale here, thanks for sharing your thoughts with us here !

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Irene Selak


Fri Aug 22, 2014 12:23 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 251
Post Re: Caregiver as the COACH
Thanks Pat! I think that's a great way to look at the role - and I think it goes for anyone looking after a senior or anyone with a disability who is unable to advocate for themselves. Pull together the best resources you can and then work with them to make the best of it!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Aug 27, 2014 11:06 am
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 59
Post Re: Caregiver as the COACH
Well stated.

Regardless of your personality type, when you're the caregiver, you have to grow a spine. You can be FIRM and kind at the same time.

Also remember this key thing: "NO" is a complete sentence. Doesn't have to be said nastily or with ire. Just "no" and walk away.

"Can your husband have oxycodone for pain?" No
"Oh but it works so well for this procedure!" No

:D


Wed Aug 27, 2014 11:51 am
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