Don't know what to do or where to turn.

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DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
197
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
I guess the dreaded ALS has finally started to work it's evil on my husband. He has had 3 falls in the last two weeks. We don't live near our kids so it's just us. This morning, he fell in the bathroom and I had a really hard time getting him up. What happens when I can't? We have a neurologist appointment on Thursday but am worried that I won't be able to get him there. There are three steps down into the garage and I don't want him to fall on the concrete! He has a walker and uses it but I think his legs are getting to a point that even that isn't helping much. God, I hate this disease and I hate being alone, not knowing what to do. We have filed with the VA back in October but haven't heard a word - typical. So no help there. What can/should I do? I need to go to the grocery store and am afraid to leave him. We don't know the neighbors that well as we only moved here 10 months ago and haven't been able to get out much. I feel so frustrated as I usually have all the answers :smile:
 
i wish I lived closer I would build you a ramp. Is there any way he can sit on his butt and go down the 3 steps? I thought someone talked about a case worker at the VA, that was sopose to put things right on through for people with ALS.?What about the ALS clinic?
 
When my husband was at this point we had ramp put in and got a transport wheelchair ( walking down or up a ramp is also dangerous at this stage). When in doubt or going long distances use the chair. As far as the house is concerned, clear pathways, put away any type of area rug (my husband got caught on them all the time). Look around the house and change it to suit your situation. We moved our dining room table into our livingroom and the couch into the dining room... a little weird at first, but it actually looks better this way! (And works a heck of alot better for us all). I would also consider grab bars for the bathroom and shower if you have not already done so. And a shower chair. If you have a tub get one of the ones that are half in and half out of the tub so he can easily sit and put his feet over the side of the tub. Just a couple thoughts, Good luck
 
I agree with KKay. The transport chair is essential at this stage. Also, a heavy duty rubber mat for shower or tub. Shower chair is a must. House must be cleared of anything that is a barrier for the transport chair or that will cause a trip/fall. Your neuro may want to order a safety inspection for your home. An occupational therapist may be needed for immediate advice.

Good luck with your situation. For what it's worth, all of us have started out where you are now, and caregiver isolation and frustration are hard to overcome. No matter how much help outside agencies may offer, most of us discover the necessity of pulling ourselves up by the bootstraps to deal with the expected and unexpected day-to-day hardships. As dreadful as ALS is, if you can think of it as a chronic disability, you will discover ways anticipate needs and prepare for them.

V, Caregiver
 
When my husband was at that stage and falling all the time we invested in an inexpensive electric scooter. he could ride it in the house and I could go to work and not worry he had fallen. Also made it easier to get out and do things. I agree you will have to rearrange the furniture to suit your new ALS lifestyle. is the 3 steps the only way in and out of the house? my husband is able to go out thru the back door with out a ramp and come around the front. with a chair or scooter the distance doesnt matter.

PS--don't wait on ordering a power chair...do it at your next neuro appt. it could take a couple of months to get.

Hang in there!
 
The VA recently announced that all vets with ALS will be awarded 100% disability upon diagnosis. If you do not have a Veteran's Service Officer (VSO) or Paralyzed Veterans Administration (PVA) rep you probably should. They can be a great asset to your husband's claim as can you. Call his primary care doctor at the VA and get an appointment asap. Through the primary care doctor is the way to many services and equipment. You will have to push hard. You can also get help via aid and attendance. Some of the other members on the forum have used and are using more services then we currently are so maybe they will step in and offer more thoughts on how to proceed.
 
Also, some resources... the ALS Association is a good resource for items they may have in their Loaner closet. At one point we had a transport chair and shower chair from them. Ramps... the ALS association sometimes has pieces of metal ramp that can be installed but their requirements are 12 inches of ramp for each inch of height. 38 foot ramp to replace 4 steps, Ouch! We did about half that, but you do have to be careful it isnt too steep. A handy man or possibly a group in the area that does charitable projects for families or schools could get this done.
 
If the ramp is inside your garage, you can fudge it a bit more in terms of the ADA regulations.... my Mom has a ramp in her garage for my stepDad that goes up the side wall, and has a landing at the top to turn and go over the threshold. It's not the easiest to get my scooter around, but it also saves room in their 1 car garage for their car.

I use a scooter in the house, and have moved my bedroom downstairs. Sounds like you have a lot of great advice here especially make some noise at the VA to get your benefits going.
 
Thanks all for the comments and support. We have several issues that may prohibit us from doing some of the suggestions - one is that we are in a rental house. There are three steps in from the front door and the garage. HOA prohibits ramps on front of the house. OK in the garage. The back door has the door ledge and one step down (actually two steps). The problem there is we are zero lot line and it's all grass to the front of the house and we can't put anything down. I've thought about the back door but pushing the walker through the grass then uphill to the garage isn't to good a idea.

We filed with the VA through the DAV and gave them power of attorney. I'm calling our rep tomorrow! My daughter also has connections to one of our Senators in DC and she is going to call next week when they get back. It will be 2 months tomorrow since we received the letter from the VA that they have his file. He does not qualify for VA services at this time as there was no disability when he retired so our primary care doctor is a local doc.

I looked up the ALS Assoc. and the only thing in our area is a support group at our local hospital. I will also try to call the contact tomorrow.

I'm not sure what a transport wheelchair is but will google it. Will talk to the neuro on Thursday about it.

I believe we are going to have to move and I know that the stress of doing that isn't going to be good on him. I've looked into our state VA Nursing Home and he does qualify. Maybe something temp. I can use till we figure something out. At this point I just don't know. I also need to find out what medicare/tricare for life will pay for in home care. I know he will fall again and am petrified that I'll not be able to get him up.

Luckily, our master bath has a very large shower with a hand held shower head and a built in seat. I'm thinking I'll still get a shower seat for him as it will be closer to the controls. Again, I'll bring it up with the neuro on Thursday.

I'm really concerned because he's been sleeping all day and I've had to fight to get him to take his meds and drink a Boost. Some of the sleeping may be from the fact that we were in the ER for 4 hours New Years Eve and again for 3 hours on New Years Day due to a persistant nose bleed. Needless to say, neither of us got more than a few hours sleep in a 24 hour period.

I've though about looking at assisted living but not sure we can afford it, at least not until the VA comes through.

Mary - I don't think the 100% disability order has been signed. From what I've read on mil.com it was drafted and approved in 2008 but that's it. The only part that has been approved is the 90 days active duty and not needing to have serve in a war zone. It would be great if I was wrong and you were right ;-)

Thanks again, y'all have given me a boost that I needed. I guess I've been feeling sorry for myself and frustrated to tears. Still don't have all the answers but do any of us? One day at a time.....
 
Hi!

It was approved not too long ago, just before Christmas, and will be effective January 19, 2012. In the meantime if your husband has not registered with the VA hospital/clinic in your area he absolutely should asap. You will need his DD214 for this. Once registered you make an appointment with the VA primary care doctor and tell them when you make the appointment your husband has a diagnosis of ALS. This step has to happen before anything else can proceed. The VA primary care doc is the gatekeeper. Once you have this appointment made you tell them he has to also have an appointment for a the VA neurologist. Tell them time is of the essence.

There is a grant called HISA through the VA which will be enough for you to have a ramp put on the house. This must come through the OT/PT department.

I hope you can get some help sooner rather then later....you are in my thoughts and prayers.
 
Call a handicap/medical transportation company. Many have the help needed to get them in and out.
 
I wish they had an ALS clinic they always have a loan closet.
 
Mary,

I have been told by the VA that my husband is not elegible for care at a VA Clinic because of our income. So, if I call to get him a appointment I think I'll be told the same thing again. Our DAV rep said that we will be contacted by the VA with a appointment date after they review our file so I'm under the impression nothing can be done till then. I may go ahead and call them though. All they can say is NO. Wouldn't be the first time. Tomorrow is another day and I'm planning on being on the phone a lot, making calls. Thanks. Glad to hear that the order was finally signed!
 
Do you have a church that you attend that might help? Ours has been wonderful.
 
DeansWife, the VA may have given you a wrong impression because they didn't understand his disease. Nearly no one understands what ALS really is, not even the nurses and certainly not the administrators.

Even though you have income above the limits, they can treat your husband. Get a wheelchair, roll into the Enrollment Office at the VA Medical Center (it's a long wait but worth it), ask for help filling out the paperwork, and impress upon them that he is Catastrophically Disabled. They can assign him into Priority Group 4 and start treating him immediately.

You have got a WHOLE LOT of help for you in that area. Call the VA 800 number and ask which VA Regional Office has got your paperwork. Tell “Peggy” to send the VARO a message that his ALS has progressed: He has lost the use of both feet and legs. Does he also have weakness in his hands? You are probably eligible for Special Monthly Compensation Level R2, which is more money monthly than you can imagine. At the very least, this phone call should get you on the fast track.
Also, you can drive up to your VARO and see the Public Contact Team, to give them any new doctor’s notes or EMG tests. Once you’ve got the sympathy of someone in the VARO office, they can go find your C-file and get the claim fast tracked.

When my wife’s legs were useless, I carried her a lot. One day we fell, and I called EMTs to pick us off the floor. They’ll do that. They’re really big guys, and they like to help. VA will pay that bill, as would Medicare or Tricare.

Ask your VA medical center’s Beneficiary Travel (Bennie Travel) office to set you up with a Special Mode of Transport to pick you guys up to take you to appointments.

Also ask the Disabled American Veterans (DAV) what they can do. They have the contract with VA to transport veterans free of charge.

A transport chair is like a wheelchair, but it has smaller wheels and is generally for indoor use only. The VA issued us two transport chairs: one that is designed to wheel into a shower, and another that converts into a sliding shower chair that slides on rails over the bathtub wall to become a shower seat. Both of our transport chairs also have bucket potties, and both can roll over the top of a toilet so you can poor into the toilet while sitting on the transport chair.

ADA trumps HOA. Even if you’re renting (I’m renting, too.), your landlord can do whatever is needed to modify the house. The VA can also modify a rented home, with the landlord’s signature and yours.

Don’t skimp on a homemade ramp. The wider, the better. You don’t want to make it too steep. It’s really scary if you’re paralyzed and start to lose control on a ramp.

VA had a contractor put three ramps on our rented house: one in the garage, and one each back and front. It’s required to have two ways out of the house. My ramps are metal, or installed with only two screws, and they can be easily removed from the concrete.

Also, I picked up some rubberized “deck tile” at the Home Depot garden department, and made a little wheelchair sidewalk across my yard, quick and easy.

There are four ways to get VA to pay for your house modifications. The big $66,000 grant is for homeowners, and can be used to buy a home, as well. That’s a really nice down payment. Then there’s a $12,000 grant that you can also use, even if you used the big one, too. Also, the prosthetics department at your VA medical center can do whatever it takes to prepare your home. Finally, the Vocational Rehab (VRE) people can use Chapter 35 funds to buy anything at all to give the veteran the best quality of life possible. They have been known to buy entire woodshops and photography studios for vets who can’t leave their houses.

We drove the distance to Tampa VAMC, because they have an outstanding ALS Team and SCI Clinic. (You can use any VAMC you want.) They are experts at providing and fitting a power chair quickly. We used the Permobil C-400 with a ROHO inflatable seat pad, which is MUCH more comfortable.
Also, they put us up at hotels so we could rest both before and after our appointments.

Of course, the vehicle grant is super. We bought a $35,000 Honda Odyssey with a $35,000 Braun modification for the power chair. The Permobil Permalock is easy to use, just drive the chair up the ramp into the van, and turn into the passenger side, then push a button and, “click,” the power chair is automatically locked into place in the passenger side. Total cost to me for the van was $9000 cash and a trade in. You get a new van every two years. The van dealers know all about how to do it.

Some vans are cheaper, but we went first class. Love the sound system.

VARO will also give you a letter telling you that you’re eligible for Social Security Disability payments. Also, VA will pay Dependents Education Assistance which you can use anytime during the next 10 years.

You’ll need to keep a notebook of all the people and what they do, because NO ONE in the VA is aware of all the neat services and benefits they have available for you, so you’ll be relying on a dozen different experts, each one is only knowledgeable about their own little area.

Like I said, you’ve got a lot of help available to you that you probably didn’t even know about. Get to know your VSO and PVA rep, and get on a first name basis with the ALS Team and the Prosthetics Dept. They really do look forward to helping out as much as possible, as do I.
 
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