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

Topic Making decisions about care etc. Go to previous topic Go to next topic Go to higher level

By carman96 On 2013.05.27 21:26
I am having problems making decisions. My husband isn't much help. He doesn't totally understand our situation.
I have couple friends that are urging me to get help from someone who can help my husband take a shower etc. And/or stay a night so I can get some sleep. I haven't really talked to my husband about it. I just feel it's the last straw as far as him having any dignity left. So I feel like I need to do it myself for as long as possible.
When and how do you make this decision?
I really need to get a shower remodel but can't figure out who to call or what I want.
I just feel really bogged down in the details. So I keep procrastinating. I know there are even more decisions that I have to make for the future.
He has declined so much in the past 6 months it just seems like things are changing so fast and there are so many things to think about.
Thanks for letting me vent!!

By parkinit On 2013.05.27 23:32
Carman -

There are so many things to do and if you ad a remodel on top of that, it does seem a bit overwhelming, doesn't it. You need the break and he'll get used to someone else assisting with the shower. I'm little by little trying to integrate this into our lives now, too.

By LOHENGR1N On 2013.05.27 23:36
carman, You could try calling your counsel on aging or His Doctor, ask the counsel if they know of anyone who can go to your home to see what you need or his doctor to find out if they know of any home P. T. people who could advise. When you find out what you want or need you could contact the local Masons or Rotary club. Elks or Lions clubs to find out if they do home projects for People in need. I don't know if this will help but it is worth a try at least. Hang in there and good luck.

By carman96 On 2013.05.28 11:23
Thanks tor the support. He is 100% disabled vet from the PD. So I think the first thing I will do is call Veterans service officer for our county to see what they can offer.
I just need a good kick in the butt to get me started!

By jcoff012 On 2013.05.28 11:29
Carman, I agree with Al. When my MIL started a rapid decline, they called the Area Council on Aging and they sent out a person who made recommendations as to bathroom changes, etc. Then, they sent out a person who actually MADE the changes, for a donation. That was in North Carolina, but I believe there are agencies in most states. Good luck!

By Betsey Clarke On 2013.05.28 13:39
It is good to know that your PWP is a vet. The service officer is definitely the way to go first for help. They were so helpful to us, even tho my husband isn't service connected. They have given us a custom built motorized wheelchair, and also an electric lift with a sling that is a one person operation (EWC Lift) when I need to move him from the bed to his chair and back. He didn't need either one right away, but i use the lift all the time now, and it is a godsend. If the VA can't do the home assessment, they will contact Medicare, or the Council on Aging to set something up. Don't wait, this is really important for your decision making. You may also qualify for Aid and Attendance for taking care of your husband ($1700 a month) from the VA. I couldn't get that, but am getting Spousal Pay (1400, plus full benefits) from the state for taking care of my husband. I use that money to pay for his shower aides twice a week, home improvements (like remodeling the bathroom) and other things. There is help out there, and good luck!!

By jcoff012 On 2013.05.28 18:03
Betsy, my husband is a Veteran, but he asks if these benefits are for ANY vet, or is it for those who have retired from the service? Thanks, Jane

Great information.

By carman96 On 2013.05.28 19:37
Thanks Betsey. Good to know.
My husband is 100% disabled service related because of the agent orange exposure in Vietnam.
We are getting compensation from the V.A. thank goodness. It really helps. But they are supposed to take care of him too so I will go the veterans route first.
Thank you all for the encouragement! I really needed that. I will let you know what happens.

By Betsey Clarke On 2013.05.28 19:44
I think any vet can get benefits. My husband was in active duty (Navy) from 1961 to 1963, then the reserves for four more years, so he doesn't have a pension or anything. Nor is he does he have a service connected disability. So make an appointment with your closest service officer, and they will get going on your case. My husband qualifies for free medical care at the VA hospital, but not the full benefits offered to veterans who were in active duty during a time of war. However, we did get VA sponsored home health nurses, mental health, and an occupational therapist for awhile. The home health department is a new program, so it would be different in other parts of the country. It can take years to get some of these benefits. Since your husband has a Parkinson's diagnosis, he would be a good candidate, I think.

By mylove On 2013.05.28 20:50
What about for non-vets? Are there still resources available?

By carman96 On 2013.05.28 21:48
I do think that your county council on aging would be a good resource . I heard that the senior center has information on these services.Also our county has peer counseling available too. I guess we just have to explore all options. We need the help!
I appreciate everyone who shares what their experiences are! It really helps to hear what others have done to help their PWP and themselves.
thank you all for helping!

By parkinit On 2013.05.29 00:01
Carman -

My spouse has identical classification to yours - 100% service-related due to agent orange exposure. Here is what you can and should obtain from the VA (sister, I've done quite a bit of homework!):
1) power chair or any assistive device he may need (walkers, potty chairs, hoyer lifts, specially developed silverware). Our occupational therapist (yes, you get one of those, too), brought in a huge catalog and said, "Let's see what you need."
2) a lift to get the power chair in the back of our vehicle (Tahoe)
3) medicines (not all are available, but most), bed pads, diapers (they don't offer pull ups), catheters, lotions for dry skin, and some other OTC meds (just ask)
4) home-based primary care services (nurse visits and provides all meds possible thru the VA)
5) access to psychologists, physical therapists, occupational therapists, nutritionists, etc.
6) optometrist services (including glasses)
7) dental services
8) clothing allowance
9) aid & attendance pay in addition to his regular pay to assist in covering caregivers
10) 30 respite days per year of 6 hours each per day for the caregiver
11) home modifications up to $64,000 that are ADA compliant.
12) Auto grant that is modified new or used vehicle for handicapped (once in lifetime of veteran) up to $19,500.
13) Priority for nursing home placement.

It seems I found out about something new every few months. We are using the home modification grant now.

By mylove On 2013.05.29 00:57
Holy geez, what a list! That's wonderful. Here's my bit of black humor for the day - now I'm wishing the military was to blame for the dang PD and not just his job! The occupational benefits are good, but I don't think we can get half of what's on that list. But then, I guess it's time to do my homework.

By carman96 On 2013.05.29 06:40
Thank you parkinit!
That's quite a list!
My husband doesn't see VA doctors and the counselor at the nearest VA clinic is totally useless. The very first time we saw her she wanted us to get on the list for the VA nursing home. Scared the crap out of us since he was doing so well at the time. I'm not going that route unless I have no other choice. Plus they billed our insurance!
Definitely I will call our county service officer first.

By parkinit On 2013.05.29 21:25
I didn't mention PADRAC groups within the VA (please look this up). You can request that he be flown to a PD "specialist" group if you don't have one nearby. We were flown from the middle of the U.S. to Houston to visit a PD specialist - paid for by the VA. They also covered our lodging and transportation to and from the hospital while there. You just have to cover your meals. The specialist was VERY good. If my spouse was in better health, we would probably visit her again. We stayed several days to be fully evaluated.

While there, they ordered my PWP a U-step walker, which he has used quite a bit in the house. They have a laser light so when the PWP freezes up, it is supposed to give them a line to consciously step over. Also, it's braking mechanism is opposite of most walkers - you have to depress the handles to go, otherwise the brakes are on.

I will say with the VA, you have to be tenacious and follow up and it takes time. Be patient. :) Things will happen for your spouse.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you