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 Dad newly diagnosed, need some suggestions for coping 
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Joined: Mon Sep 27, 2010 10:35 pm
Posts: 3
Post Dad newly diagnosed, need some suggestions for coping
Hi everyone

My dad's Parkinsons was diagnosed a few years ago and about two weeks ago we were told of his LBD diagnoses. My initial reaction to anything like this is to get educated, read what I can, find alternative therapies and stay positive. I'm finding that REALLY difficult this time around. There isn't a lot of hopeful news when it comes to LBD.

Neither my brother or I will be his caregiver since he's remarried and does not live in the same city, so at this point I just need some suggestions or books or articles to read to help me cope and come to terms with his illness. Hearing my brother tell me today that his wife will ask him to make a salad and he needs to be told how just broke my heart.

He's only 64 and the Parkinsons already has taken away so much of who he used to be and this is just devastating. Apparently when he was told he broke down in the doctors office but appears to not remember being told and the doc is saying we probably shouldn't be talking to him about it. I think that in itsself is making this harder.

I've spoken to him since his diagnoses and it must have been on his good days because he's seemed the same to me but I know I won't always get that lucky.

I'm just spinning, feeling hopeless and terrified I'll be parent-less by the time I'm 40.

So I'm just asking for help. I want to be there for when he needs me, but I know I need some help for me right now. What are some way that you all cope with having a loved one with this disease?

Thanks. :)


Mon Oct 04, 2010 11:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Dad newly diagnosed, need some suggestions for coping
Welcome to the forum! One book you might want to read is Life in the Balance, by Thomas Graboys, MD, a cardiologist who developed LBD and has chronicled his experiences, frustrations and means of coping in this fascinating book.

_________________
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.


Mon Oct 04, 2010 11:29 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Dad newly diagnosed, need some suggestions for coping
Chele, I'm glad you've found this forum. My husband was the same age as your dad when dx. Six years later it never got better. I found it's easier to go with the flow, try to redirect, although it seldom works for us. It constantly changes but when today is bad you have the hope that tomorrow, may be better. Reading and posting on this forum will help you to understand and know that you're not alone. I did take a while to talk to Frank about this disease and his future, "some" of the facts. Blessings to you and your brother and I hope your step-mother is a strong woman, physically and mentally.
Take Care, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Oct 05, 2010 6:20 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad newly diagnosed, need some suggestions for coping
Welcome to the LBDA forums and glad you found a place to help you with support. I urge you to go to the LBDA.org website, there you will find all kinds of resources such as books and support groups .
Since your Dad is newly DX'ed this might help!

http://www.lbda.org/feature/1942/an-int ... mentia.htm

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Irene Selak


Tue Oct 05, 2010 9:13 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Dad newly diagnosed, need some suggestions for coping
Hi Chele - I, too, welcome you to the LBDA forum. You will learn a lot by reading and participating here. There's already a lot of info. on here by folks "in the trenches" that can be helpful to you. If you can't find a topic and have specific questions, just get on and ask anytime. People here are very helpful and supportive.
Yes, your roles will switch very soon if they haven't already, and with the support and caring of your stepmom and other relatives, you'll have others to help with the burdens of caregiving. You can also give each other moral support, which will be incredibly helpful to each of you on this complicated and difficult journey.
I hope you come to the forum often! Lynn

_________________
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.


Tue Oct 05, 2010 12:34 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Dad newly diagnosed, need some suggestions for coping
Welcome, Chele.

Stay with the forum and read as much of the discussions as you can. You can tell, just by the titles, that it isn't all misery. There are also humorous times. I think a lot of it is in how you approach things. If you can accept that you can't change this and can't cure it, if you can accept Lewy, you have a better chance of helping your Dad and Step-Mother.

Speaking of your Step-Mom, don't leave her to deal with this thing alone. I can assure you that this is most likely not what she bargained for. Regardless of her strength, she is going to need support, your presence as often as possible, and your expressed appreciation. She needs a lot of TLC.
When you marry someone with adult children, and the new spouse (or new-ish) falls ill, you have a right to expect some help. Here's one of my many stories...

In her late 50s, my Mom married for a second time. The marriage ended 5 years later when he died of cancer. He had two adult daughters, but Mom had sole responsibility for caring for him. They were several states awa y.Mom had some help from my sister (related to him only through Mom's marriage) who had moved there for her first teaching job. His daughters rarely visited, though professing great love for both him and Mom.

And he was not an easy patient. An example is that some friend of his gave him an airhorn, which he used once to summon Mom. He was lucky that airhorn didn't become a permanent part of him. He was whinny, demanding and unappreciative. Taking care of him was a huge burden, especially starting in the third year of their marriage.

When he passed, Mom had the entire responsibility again. As executor of his estate, and after a year and a half of caring for him kindly and with little help, she executed the terms of his will, which gave everything to his daughters (though her assets had diminished during their marriage, for some reason). And she paid for the funeral, again with no help from his daughters.

Sometime later, when one of the daughters had married and was looking for help with her child, I became very protective of Mom and told the daughter that she was not their mother and that she should be asking these things of her mother-in-law. I would not let these unappreciative women use my mother again.

Moral of the story is that no second spouse (and no spouse period) should have to care for a patient, whether dementia or other illnesses, alone. Give your stepmom as much help as you can - no, not just as you can - go out of your way to help. Give her as much TLC as she is giving your father. She deserves it.

Now, look through the forum for the titles that sound light-hearted. And refer your stepmom to the forum, too.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Oct 06, 2010 1:22 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad newly diagnosed, need some suggestions for coping
I'd definitely recommend "Life in the Balance." There are also lots of blogs available -- mostly by LBD caregivers but at least one by an LBD patient. You can do a search of past posts containing the word "blog" and that will probably lead you to most of them.


Wed Oct 06, 2010 2:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Dad newly diagnosed, need some suggestions for coping
Kate - your mom's and your stories are another reminder that we all need to do a number of things so our LOs aren't in turmoil and have additional financial burdens after we die or if we suddenly cannot handle our affairs. If we care about our family members, getting all necessary legal documents taken care of will lift a tremendous burden if we become incapacitated. And, discussing important topics with our LOs, like what's in our advanced directives, funeral wishes, etc. will make everyone's life easier. We may have pretty good health, but you never know when an accident or something could occur.
I wish there were a magic wand that could be waved over the people who should be helping take care of at least some responsibilities when our LOs become ill. We can't change the behaviors of others, but it sure would be nice if everyone chipped in and took responsibility when they were needed. I hope your stepsisters will step up and help you take care of your mom like she took care of their dad. Is it possible for you to ask them for their help? Lynn

_________________
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.


Wed Oct 06, 2010 10:27 pm
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Joined: Mon Sep 27, 2010 10:35 pm
Posts: 3
Post Re: Dad newly diagnosed, need some suggestions for coping
Thanks for all the welcomes and advice! We're having a conference call with my dad's wife and his doctor tomorrow to discuss care that's needed now and in the future and hopefully some of our questions will be answered.

Also finding this article about long distance care-giving is really helpful. http://www.nia.nih.gov/HealthInformatio ... aregiving/ I feel guilty enough about not being able to be there more to help but its nice to know its a common issue and there are things I can do from far away and I shouldn't feel so guilty about it all.


Thu Oct 07, 2010 12:41 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad newly diagnosed, need some suggestions for coping
Glad that article was helpful to you. I also found it helpful, and I pass it out to any local support group members who are "remote" caregivers (ie, live in a different state that the care recipient, or those who are not the primary caregiver).


Thu Oct 07, 2010 11:08 am
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