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 Madison, Wisconsin neurologist to recommend 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Madison, Wisconsin neurologist to recommend
Yes, a social worker is a good place to start, if you haven't done that already, Craig. It should be in your home county, because program and rules can vary. Even federal programs are administered on the county/state level. The social worker is who urged me to see a lawyer, and that took care of POA, health care directives, etc. and also the application for Medical Assistance (which I think used to be called Medicaid?). The social worker also referred me to other resources available in the area.

Good luck!

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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


Sat Apr 30, 2011 3:37 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Madison, Wisconsin neurologist to recommend
Jeanne,
Who do I call to find this type of social worker? I may be able to ask my clinical psychologist......thanks for this help....it's especially important to do these things while we still can - I'm not at all sure my hubby will be able to deal with these type of things once I am sicker....he is not a "practical" person - very cerebral if you understand what I mean...all in his own head....I am so grateful for this practical advice....can I even apply for disability as long as I am still working part-time? I wish I had known before...I took a 6 month medical leave in 2009 while I was still full-time - if I had known then, I would have filed then instead of taking the medical leave and I came back part-time since that was all I can manage....and barely....
Thank you all for your wisdom!
Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Apr 30, 2011 7:12 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Madison, Wisconsin neurologist to recommend
Jeanne - also thank you for sharing my frustration at the treatment I have received over the last decade...especially the female bias...I KNEW something was wrong so whenever a doc told me depression and I needed an anti-depressant I never went back - of course that wasn't at first - but as I learned.....Thank you for your validation...I hope your diabetes is better and I am so glad it was dx......

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Apr 30, 2011 7:15 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Madison, Wisconsin neurologist to recommend
Sorry one more thing....I have not contacted JH but I sure would like too...My mother wants to...but I don't want to spend my good days doing that...I am hopeful that someone in my family will tell them for the people who come after me - as craig said.....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Apr 30, 2011 7:17 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Madison, Wisconsin neurologist to recommend
Tonya, whatever county you live in should have a social services department (the exact name could be different) and you should start there. Once you explain why you are calling, they will know where to send you.

Julianne


Sat Apr 30, 2011 7:38 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Madison, Wisconsin neurologist to recommend
Tonya wrote:
I'm not at all sure my hubby will be able to deal with these type of things once I am sicker....he is not a "practical" person - very cerebral if you understand what I mean...all in his own head

Tonya, I did pretty much what Julianne suggests -- call the county social services office.

As for you hubby ... As you read posts you may be really impressed with what caregivers are handling. I am. There are so many skills needs, so many aptitudes used. None of us was born knowing how to be a caregiver, and very few of us had training or background experience when thrust into this role. You both may be truly amazed at what your hubby will be able to do when the need arises. It is very fortunate that you can do some of these practical things upfront. And it is fortunate that you have time to discuss the future and various contingencies. Getting hubby hooked up into a support network long before the need arises can be helpful. For example, he should meet with the social worker, lawyer, doctors, etc. with you, in preparation for a time when he may need to take over that role.

Remember that not everybody has every symptom. Not every person has the same progression. What hubby will actually have to deal with and how soon that may occur is hard to predict. I don't generally think it is a good idea to borrow tomorrow's troubles today. Thinking about all the things that might possibly happen could be overwhelming! But doing a little preparation for the future can be helpful, and not everyone gets that chance. What are hubby's strengths that you both can build on? What are weaknesses that you could perhaps have other people help with? If hubby had to take over the practical paperwork do you have a relative or close friend who could step in and help him? Having a plan in place ahead of time might be a comfort to all concerned.

Dementia is truly a family disease. It strikes the patient and also the spouse and/or the child. You didn't wish this on your hubby anymore than you asked for it for yourself. It is nice, though, (and unusual) that you may be able to help him deal with.

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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


Sun May 01, 2011 1:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Madison, Wisconsin neurologist to recommend
The only caveat regarding county social services, etc. is that you need a Medical Social Worker, which they may or may not have on the staff. These social service professionals are specially trained to arrange client's services appropriate to his/her medical condition. Hospitals usually have them on the staff as do most home health agencies. I worked with them and found them invaluable.

_________________
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 May 01, 2011 10:10 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Madison, Wisconsin neurologist to recommend
Just to clarify, I was responding in the context of the questions about medical assistance and the application process. Didn't mean to suggest that is the only resource you should seek out, though the county social services office should know of other resources that are available.

Julianne


Sun May 01, 2011 11:20 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Madison, Wisconsin neurologist to recommend
You should be able to get some helpful information from your local Dept of Human Services, Seniors and People with Disabilities. They have been tremendously helpful to my mother and I. In fact, I am now able to stay home with my mom and get paid as her caregiver.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun May 01, 2011 1:09 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Madison, Wisconsin neurologist to recommend
Thank you all for all this helpful information! I am most grateful....I'll start looking into it this week....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 01, 2011 2:28 pm
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Joined: Wed Aug 03, 2011 10:46 pm
Posts: 1
Location: Midwest
Post Re: Madison, Wisconsin neurologist to recommend
Glad to see this thread since I'm also in the area. Good to know about Dr. Yucus. My mom sees one of his colleagues who is okay, so perhaps I'll request a transfer.

Would also like to hear from Madison-area people about geriatric psychiatrists. Who have you found helpful? My mother's currently seeing a person who's supposed to be the best of the best, but I find communication very difficult with this individual and don't feel respected and heard as an advocate, even though I'm the health POA.

Finally, please share any good facilities you know of in the area that deal with LBD/PD and related tough behaviors. Mom has severe delusions and hallucinations at times, and her current facility is really struggling.

Thanks in advance!


Thu Aug 04, 2011 12:17 am
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