For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic V.A. caregiver support Go to previous topic Go to next topic Go to higher level

By carman96 On 2013.06.11 09:15
After a couple days of phoning and not getting to talk to a real person at the VA I finally called their caregivers support line. A real person answered right away! They were very helpful and understanding. It's good to know there is someone there to talk to and ask questions.
I finally got the ball rolling to try to get help from the VA. It is a process that's for sure! Since we haven't been going to VA doctors we had to see a doctor at our local clinic. We have to travel a bit to get a mobility assessment. And we have to see the local social worker. Unfortunately it's the same one we saw before who I think was useless. Now I know a lot more so I will be putting her on the spot for help!
I was also contacted by a caregivers coordinator person who gave me a lot of info and will be sending more in the mail.
They really make you jump through hoops but hopefully it will be worth it!

By carman96 On 2013.06.11 09:23
And thank you parkinit for giving me the list of services available! It definitely got me headed in the right direction!

By parkinit On 2013.06.11 22:38
carman -

You are welcome. It is a frustrating system, but well worth the help if you can stick with it.

I just called my home based primary care occupational therapist and told her I thought it is time for us to get a hospital bed and Hoyer lift. She said, "No problem, I'll get right on it!"

If you have any questions, you can e-mail me offline at hirecaregivers at aol.com. I've gone through quite a few hoops and truly have experience tenacity in the process. Hang in there!

By LotsaBob On 2013.06.13 09:03
Carman96, I don't want to scare you, but the VA has had to make some cut- backs also. The caregiver program is where they started. When I lived in California I had a caregiver come 4 days a week for five hours a day, Then it was cut to four hours a day for three days. Now here in Kansas I have a caregiver come for two hours a day two days a week. I think it varies from state to state but I'm not sure.

Not to change the subject. Al, can you e-mail me. I need to talk to you about something personal.

By LOHENGR1N On 2013.06.13 16:38
Bob, email sent

By carman96 On 2013.06.14 10:30
Bob
I'm sorry you are not getting as much help as you need. I hope you are getting by ok.
I am just trying to get as much help as possible from the VA, whatever that may be. One thing that is disappointing is they don't have any overnight respite unless I take him to a facility, which I really would hate to do. Its just that the most exhausting part is during the night time.
I'm just trying to get it started because I know the VA takes forever to do anything.
thanks for the warning though.

By seawench On 2013.06.14 10:57
The VA in Spokane gives us 6 rhours every other week, and we can choose to make it an overnight if we pay for a couple of hours at a discount. They also have a week every couple of months at their onsite facility that has to be prearranged. I've just started needing extra help and am also going to coordinate his medicare benefits also.

So far his Nuerologist and PCP are wonderful compasionate people and we wouldn't go anywhere else. I'm a little leery of finding a PCP for the medicare stuff but you do what ya gotta do.

So true that it's the evening stuff that is sooo exhausting. It takes us 2 - 3 hours to get all the little minutia stuff done.

We came up with a cool solution to the hospital bed you can see it on my blog:

thepasinireport.blogspot.com

I know it's extremely frustrating to try and put all the pieces together. I wish there was someone you could go to that would put it all together for us. Between taking care of him, working full time I really struggle to try and figure out who will do what ect...

Good luck
Seawench

By carman96 On 2013.06.14 18:13
Seawench, interesting blog. You sure have made the most of your bedroom space.
Thanks for the tips.

By mylove On 2013.06.15 11:15
Sue, I just read your blog. I think you are close to me! We were originally in Moses Lake but now have relocated west. Would love to email you.

By seawench On 2013.06.15 13:36
Saw your e-mail I will send a reply asap.

By parkinit On 2013.06.18 09:06
Seawench, - Love you blog! You write so what I often feel and write as well (just not in a blog, but in private notes). I love your sense of hope and inspiration, and FAITH! Is there a way to subscribe to your blog? I didn't readily see it anywhere on your blog page. Thanks!

By seawench On 2013.06.18 23:55
Parknit- I believe there is a place to click to subscribe just between the end of the posts and the pictures at the bottom. Thank you for your kind words. I was a little unsure about posting my blog info, but I soooo wanted to show what we did with the beds.

Thank you all for your kind responses

Humbly
Seawench

By parkinit On 2013.06.19 20:02
Sue -Found it and subscribed! Thanks!

By Betsey Clarke On 2013.06.19 20:11
We were able to have an EWC Lift installed in our bedroom, that was paid for by the VA a couple of years ago. It has been a great help to me, and worked in our house, which was too small for a hoyer. When my husband was in rehab at the VA CLC facility in Vancouver, WA for 3 months, healing up from a staph infection, I really appreciated his PT there. They took the time to listen to our problems with mobility issues in our house (just living quarters behind an old store). Everyone who used the EWC lift (ewclift.com .. it is an informative website) has loved it! It is also made for one person to operate... this was important, because all the home health companies have rules that there needs to be two people present to transfer the patient using a hoyer. I needed to get out of the house to do errands, so this was the only lift that is truly a single caregiver operation. I have even picked my husband up from the floor a couple of times using it.

By carman96 On 2013.06.20 10:13
Thanks Betsey. I will check out the web site for future reference!

By Imtired2 On 2013.06.20 14:53
Sue,
I, too, enjoy reading your blog. You are truly an inspiration. Thank you for sharing your ideas.
Dolly


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you