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 Younger caregivers 
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Joined: Sun Jul 31, 2011 11:25 pm
Posts: 12
Location: NY (state, not city)
Post Younger caregivers
Hi,

I'm new. Have been reading everybody's posts for the last day or so while waiting for my account to get set up. Glad to finally be able to post myself. So my big question is -- are there any other young caregivers out there?

I'm not the primary caregiver (thank goodness) but my dad (67) was just diagnosed and I am very actively helping my mom, commuting 90 min. each way several times a week, etc. I'm also the head researcher, if you will -- I found a description of LBD online a few days after my dad had a really scary episode for the first time back in May. And then found a clinic that was able to diagnosis him properly after the first neurologist my mom saw said he "had no neurological symptoms" and needed a psychiatrist. :roll:

But I'm only 27! And I'm single. And I can't help feeling like dating, socializing, etc. just totally went out the window.

Just wondering if anyone else is dealing with this at a similar stage in life.

Thanks!

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Courtney, 27, helping to care for dad, 67, dx July 2011


Sun Jul 31, 2011 11:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Younger caregivers
Jamie ("rae") is young as well. See:
viewtopic.php?f=11&t=2053

We have several 30-somethings in our local support group who are caring for parents with LBD. Most are taking the secondary role with the other parent in the primary role.


Mon Aug 01, 2011 12:20 am
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Joined: Sun Jul 31, 2011 11:25 pm
Posts: 12
Location: NY (state, not city)
Post Re: Younger caregivers
Thanks for the tip Robin

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Courtney, 27, helping to care for dad, 67, dx July 2011


Mon Aug 01, 2011 12:37 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Younger caregivers
Remember all of this is a part of life...

Not a side trip...to take or not take...

all of those surrounding you in all aspects of life will live it with you...

And reveal their true self...

not a time to skip life...a time to really live it...

with meaning...

It's just another part of life...

we just don't get the same parts

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Aug 01, 2011 1:01 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Younger caregivers
I think you will find that all of the CGs that are caring for a parent have all kinds of conflicting demands on their time and their psychic energy. They have children still at home that need their attention and nurturing. They have a career to protect. They have grandchildren that they longed for and are aching to spend time with. They have husbands or significant others who may be supportive but also need their attention. They have their own health issues. Nobody is at the "right" time in their life to care for a seriously ill parent.

It is important that you somehow pursue your social life, just as it is important that Moms continue to nurture their children and Grandmoms build relationships with the third generation, and career people protect their future job prospects. Even if the there are not many of us your age or with your life priorities, you will be surprised at how much we can learn from each other and find comfort and support in our mutual struggles.

You may have read that people with LBD live from 2 to 20 years after diagnosis. You can't put your life on hold for an indefinite period of that length. You are very wise to recognize that this is an issue to address upfront!

That 3-hour travel time for each visit is a killer, isn't it? Is there a bus, so you could multi-task sometimes, like maybe get a nap in while traveling? :P

As a care partner wife, I know what a huge help you can be to your mother. Being the chief researcher is fantastic. Perhaps that can extend to gathering all the information about legal documents (durable Power of Attorney, Health Care Proxy, etc.) and take over the filling out of countless forms. Those things about overwhelmed me the first year.

Giving your mom respite from her daily caregiving will be an amazing benefit to her. Even if she protests at first, try to get her to go away and leave Dad in your hands for hours or a day or a weekend now and then. You can research caregiver burden and realize how valuable that releif can be.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 01, 2011 1:10 am
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Joined: Sun Jul 31, 2011 11:25 pm
Posts: 12
Location: NY (state, not city)
Post Re: Younger caregivers
Yeah, I'm trying to set up a consultation with an Elder Law attorney to give me the rundown on what documents they need to have in place. The dr. we saw last said it's important to do that ASAP before dad's mental condition opens the door to legal challenges. And unfortunately no bus. They live in a really rural area. I would kill for a nap. LOL I suppose that's probably true for everybody in here though...

Do you have any ideas about how to improve my mom's approach to things? I wouldn't trade places with her for the world, but I don't think she quite gets it sometimes ... she keeps trying to talk to him from the other room for example, even though the disembodied voice effect makes him anxious. And she's still using these long rambling sentences with like 8 ideas in each one that even I have trouble following. :P But I always seem to upset her when I try to suggest better communication strategies.

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Courtney, 27, helping to care for dad, 67, dx July 2011


Mon Aug 01, 2011 1:30 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Younger caregivers
Maybe those communication suggestions would be better accepted from professionals than from a daughter. As part of your research, find a few good articles about how to communicate with someone who has dementia. Those 8-idea sentences just aren't going to make it anymore. :shock: Coming from you that may be perceived as criticism, regardless of how you mean it. If experts in the field agree about that, Mom might take it more seriously. You've got to remember that your mom is going through her own tremendous emotional upheavals, and she may not be completely rational herself right now. She'll adjust, especially with your help.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 01, 2011 1:45 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: Younger caregivers
Hi - I just responded to your message but figured I'd chime in here as well since I've read more about what's going on.

I will say that even though it's a struggle that you can't put your life on hold. The only way I've been able to make peace with finding happiness in everyday and in my own life is that I know my mom wants and will always want me to be happy. Both my parents are adamant that the kids live their own lives too. It's heartbreaking to feel like I'm still at the beginning of my life when my parents are struggling with this horrible situation. Sometimes I feel like we've all been robbed of so much and I get frustrated and angry at how unfair it all is but I think my family has gotten a hang of things better as time has passed. It gets easier and harder as time goes on but we're more accepting of what life is now.

Like you, I am the researcher of the family - that used to be something my mom did but of course that's not possible anymore. So, for my dad, I try to find and absorb as much information as I can without letting it absorb me entirely. He trusts my opinion and listens to the information I've found but at the same time he tends to be in the smallest, slightest bit of denial occasionally. He's learned how to talk to mom so it's easier for her but sometimes it's extremely frustrating for everyone.

I hope you can find time for dating and a social life - those things are even more important now because you'll need those breaks and that time for fun too. So will your mom; your help and support will be so invaluable for her.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Aug 01, 2011 11:44 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Younger caregivers
Courtney - here's something a friend said to me a while ago when I was in the depths of dispair over my dad's situation. "Your dad lived a good long life. You are doing what you can, but you can't give up your whole life worrying about him. He would want you to have a full life like he did at your age." Especially at your young age, you do need to have a life. It's wonderful you are researching and helping your mom take care of him.
Could you talk your mom into getting on the forum or joining a local support group? If she had a better understanding and peers to talk with (we seem to listen to non-family members better than we do family members, right?) she may change some of her behaviors that would help your dad. If a person is hard of hearing, you don't stand in another room and yell to them. It's pointless. There are several things like that that your mom might take better from someone other than you or another family member.
You do need to set boundaries around what you are going to do. I really do admire you for helping out, but you can't give up your whole social life for the CGing role, IMHO. 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.


Mon Aug 01, 2011 9:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Younger caregivers
Courtney,
You didn't mention if you had found an attorney or not. If not, see naela.org to find an elder care attorney.
Robin


Tue Aug 02, 2011 11:33 am
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