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 Home Care or Skilled Nursing Facility 
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Joined: Sat Aug 16, 2008 9:40 am
Posts: 6
Location: Northern California
Post Home Care or Skilled Nursing Facility
Hi, All,

My mom was diagnosed with Parkinson's 5 years ago. She has declined to the point where she can only walk with assistance and on bad days (which are 5 out of 7 days) not at all. recently her behavior is SO bad that I think she has LBD as well, though no diagnosis. My issue and question:

Would my mom be better off in a skilled facility. I have been working my butt off trying to keep her home as long as possible. Her full time care taker is awsome, but my mom is convinced that she is being help against her will and is already in a nursing home. I have to tell her constantly that she IS home. She is getting increasingly more difficult to deal with. (this from the sweetest little old lady normally) We are treating the behavioral issues as they come with a great neurologist. But I am wondering if she might feel safer at a home or am I doing the right thing. Money is also getting tight and I am applying for veterens help and some assistance with in home care suppliments. (Anyone, done this?)

We live in Calif. So EVERYTHING is very expensive. Any help of advice would be appreciated. Thank you.


Tue Aug 19, 2008 12:04 pm
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Annette,
Many people with LBD have the belief at some point even their homes are not their homes.The most you can do is validate her beliefs but let her know you don't believe that, On one of the caregivers sites a spouse wrote that her husband was driving her crazy wanting to go home and after constantly repeating it was his home , she realized it was another room he wanted to go to . So when he would state he wanted to go home she just took him into this other room and it worked!!
Only you can make the decision for placement but this one issue will not go away!
Apply for everything you can and see what help comes out of it!
Is your mom still able to get into the car? If so when my husband would get aggitated I would take him in the car for a ride. it really helped but of course at some point we could no longer get him in the car.
Good Luck!


Tue Aug 19, 2008 2:45 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
Annette --

I am just a few months ahead of you on the VA process. First, understand that there are two completely different sets of benefits -- one is what's offered through the medical benefits program, and the other is offered through the pension/compensation program (but nobody ever explains this to you).

If you are successful in getting qualified for the medical benefits program, immediately contact the social worker department at the main VA medical facility in your area. Explain you need in-home help NOW -- including personal care for your mom, cooking meals, cleaning, etc. The VA will send an agency up to 7 days per week, four hours per day at NO COST TO YOU!

Also, if you are in the VA medical benefits program, you can receive respite care at no cost. The stipulation is that you can't do it in less than 7-day increments, and the respite is provided at the VA hospital (not at your home).

But again, nobody really tells you this unless you keep asking everyone you speak with about what other services they have that you can use.

On the other side, based on income qualification and/ or age, your LO may be entitled to a VA pension or compensation. At the same time as your VA service organization submits the paperwork for that (a service-related disability is NOT required - just service during a war time), they should also submit an application for "aid & attendance" and "homebound" benefits. If you qualify, you will receive monthly cash to help pay for care needs. You can spend the money any way you need to. If your LO is in a ALF or NH, you can use the money toward paying for that (from what I understand, the "aid & attendance" amounts are higher than the homebound benefit). It is estimated that only 1 of 8 vets eligible for these benefits takes advantage of them because they don't know about them and they're not widely promoted.

The key to the VA system is to work through your local VA service organization -- these are orgs. that are accredited by the VA to be the front-line paperwork processors.

Lastly, because you are in CA, there are state veterans benefits separate from the federal VA benefits (true in most states). Check out Cal-Vets. I think the URL is calvets.org.

Good luck! And please let me know of any VA benefits you hear about that I'm missing out on.

Good luck!

_________________
Renata (and Jerome-in-Heaven)


Tue Aug 19, 2008 4:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Annette,
Re: VA paperwork
There's a group in Walnut Creek that will help with paperwork. I don't know if they will give service in Chico. Let me know if you want the contact info.
Robin


Last edited by robin on Wed Aug 20, 2008 11:44 am, edited 1 time in total.



Tue Aug 19, 2008 5:55 pm
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Joined: Sat Aug 16, 2008 9:40 am
Posts: 6
Location: Northern California
Post Thankyou
Hi All,

Thank you for your responses. It is nice to know I am not alone.
In reference to the VA. I was told I could submit all my expenses related to her care medications, Caretakers (which is significant) and equipment and they will deduct this from her income (which is social security) I am about to send the forms in now. I'll let you know how it goes.

And, thank you for the advice of her wanting to always go home. I sent her caretaker your advice, I hope it helps.

And, I will ask her Dr. today if he would suggest Clonzapan. I have some experience with it when my father died. And it is very good.

Thank you!


Wed Aug 20, 2008 11:39 am
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Joined: Sun Mar 30, 2008 5:31 pm
Posts: 7
Location: Williamston, MI
Post Hospice
Monday our neurologist's nurse referred my husband to hospice although he's not at death's door yet. I'd read on the LBD caregivers web site here that this is available now or else I probably would have misunderstood her referring him to hospice. They came out immediately and the next day some supplies started arriving, an aide here today for his shower. What a blessing this is turning out to be, they will pay for all his PD and LBD meds as well as incontinence pads, bedding pads, etc. I am so glad I first heard about it here.

Arlene Martin

_________________
Dreams a lot, talks to people and animals. Losing weight due to fact he can't stay awake to eat. Most of the time mind is foggy but occasionally clear which I treasure. In hospital bed now. Can get up to use commode but mostly wets disposable briefs.


Sat Sep 13, 2008 12:17 pm
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Joined: Sat Aug 16, 2008 9:40 am
Posts: 6
Location: Northern California
Post Re: Hospice
I thought I would update you all. when I read the post back in Sept i think the 12th, about calling hospice to see if they could help my mom be more comfortable. I called them about a week later. My mom actually worked for Hospice for years and my dad was a volunteer so my family was very familiar with them. when Hospice came to evaluate her I really did not think she would qualify. I thought they would help stabilize her and then she would bounce back.

Hospice generally does not take patients unless they are near end of life 6 months or less. But they did. And my mom was elated. You see she really did not want to live in her current physical state.She was wheel chair bound and had severe dementia. She died Oct 20th.

And honestly, all the behavior issues we were having with her delusions and high anxiety vanished after hospice came. She became a model patient. What she did do was sleep alot more and slowly stopped eating and then finally drinking water. And then she died. which is what she has been wanting for years.

So thank you for the post about calling hospice. I'm sad she is gone and will miss every day of my life. But I learned a lot from my mom about death and dieing and I know she is in a better place. And I know this is what she wanted.

I am convinced she would have lived longer had we not called hospice in when we did. I think she thought she could live for years with this disease and the thought caused all the anxiety and delusions. but i could be wrong.
Thanks for all you support. God Bless


Fri Oct 31, 2008 1:39 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Annette,
I'm sorry to read of your mom's passing but am glad that she received the help of hospice and died according to her own plan.
Robin


Fri Oct 31, 2008 1:42 am
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Annette,
Please except my deepest condolences on the loss of your Mom , to you and your family, she is finally released from the chains of LBD. I am glad that you took the advice of calling Hospice which allowed your Mom to die pain free and with dignity.


Fri Oct 31, 2008 7:11 am
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