Need "Planning Ahead" Advice

[applesos]

My husband is newly diagnosed and right now has pretty good mobility. Is this a good time to discuss what room we'll eventually use for him and his equipment, what modifications we should get started on, what type of bed and mattress will be most comfortable? How can I know whether our doorways will accommodate his wheelchair when things get to that point? What modifications need to be made to a bathroom? Are there companies that can evaluate the best ways to modify your home?
Is this a good time for me to learn something about feeding tubes and other equipment?
Or do you just wait until the need arises and then rise to the challenge?
Thanks, all you "master, experienced caregivers" out there!

 

[affected]

wow, an excellent set of questions, very hard to answer in a single thread though!

 

[affected]

Wow that is a big list to try and answer in a single thread, but I will try and help out.

Firstly I will tell you what I learned early - as a CALS your job is to try to STAY A STEP AHEAD. This is not always easy.

PALS often want to stay a step or two behind.

So we can be caught in a paradox. We need to live in the moment, take a day at a time in many ways, but we need to be proactive and avoid crisis.

eg, If we don't have mobility aids in place early, what if they cannot get out of bed one day as their legs are gone - crisis.

I stored a lot of equipment in the garage, and could 'magically' produce it when either it was crisis, or my PALS was ready to say he would use it.

I think you could start by making a list of what you think could be needed earliest from the great post you made.
Sit down and discuss this with your PALS.

another eg. I was looking at modifications - having part of a wall removed so Chris would have easy pwc access to the front spare bedroom. He kept resisting using the hospital bed in that room (wasn't yet needing the pwc full time and doing standing transfers), and would call it a piece of sh*t. One day, casually he said he would try using it if it came out into the lounge room. BING the light went on for me - he feared he was going to be closed away in that bedroom and forgotten to some degree! I got a son here next day and we set everything up and he began to use the hospital bed and never called it names again. Once we needed a hoist I found that actually the far larger lounge room turned out to be perfect - centre of the house, TV in there, and lots of room to move all the equipment around.

So, start talking with your PALS on what things you can raise with him.
Do you have an OT? Our OT was brilliant to help with forward planning and to be the one to tell Chris what kind of equipment was on the upcoming needs list and order it for us.

Hope that helps to start out

 

[dalvin]

Can't remember if you said your husband is a vet or not, but if he is, talk to his pcp there. They can send a knowledgable person out that can make recommendations for changes. They know what the requirements will be. You can also get a grant to help cover the costs, think it's just under $70,000. You'll need to start this early because even though the qualification will come quick, the actual approval for the changes and payment can take forever

 

[Nikki J]

I believe he is a vet so definitely start with them as Dalvin says.

As Tillie says it is vital to stay at least one step ahead. For things that you are clearly going to need the sooner they happen the better. If you are going to need a stair lift don't wait until you are struggling mightily get it early. If something is going to make your life easier go for it. Better for you and better for PALS. As you probably know we PALS have limited energy. It is hard to learn but it will be better to accept help and use assistive equipment even if he can do it with difficulty. Don't waste energy on something that can easily be done another way ( like stairs in my example) if you are then going to be too tired to do something more meaningful.

It is great you are thinking this way but don't overwhelm yourself. This is a sprint not a marathon!

 

[gooseberry]

I would say if your pals wont talk about things with you, read as much as you can on these threads and make a plan. Learn about all the possibilities you may encounter. Then as things start to progress you will have some idea of where you are headed and can start your modifications. Like Tillie said, staying ahead of things is the name of the game.

 

[Barbie]

Hi Apple--I would definitely think about the legal end of life stuff first, get it all out of the way. make sure you (both) have wills and living wills. Also you will need to get a power of attorney and a health surrogate form filled out and signed and notarized. best to do this now while he can sign/get a round. Also, sign up for SSDI/medicare right away (that depends on his current work status). I also suggest when you sign up for that, have him name you as his surrogate--because they do not accept the standard form, and in the future if he can not talk they will not talk to you.

then I would look around your home and see how it works for a wheelchair. bedroom on main floor--and accessible bathroom. the bathroom is the biggest deal in my opinion. depending on your budget--a roll in shower is #1 in the importance. We are not vets, but I believe that there are grants from VA for modifications. USE THEM! don't wait on the bathroom remodel because that can take time. don't worry about the peg or the bipap until your clinic visit. they will talk to you about those things and when they think you will need them. not all pals get pegs or bipaps. your husband will decide that. some don't need them for a long time, some do.

 

[affected]

Barbie put that brilliantly!

Short version to reinforce:
1. legals
2. wheelchair access check home
3. bathroom
4. peg/bipap etc discussions at next clinic

Those are certainly the major concerns we need to take care of

 

[cheerleader]

Applesos, it is overwhelming, isn't it!
We, too, started out with the legal, financial stuff (my husband's first priority to be sure I was taken care of!). That included updated wills, simplifying finances, making sure my name was included on all utilities, accounts, etc. after he wrote out his medical directives, we met with our adult children to be sure they understood his wishes. A united front is certainly needed while he is able to express his feelings about things like a ventilator. The rest starts falling into place as needed. We are currently getting a power wheelchair and handicap accessible van. Your experiences may be different, but regarding wheelchair accessibility, all of our doorways measure 27+ inches - and don't need to be widened for his wheelchair. If he is a veteran, you will find the VA to be your best friend! They will anticipate things your husband will need, and get them for you. Thinking we really should start a thread the lists a "things to think about and do" list so we can use the experience of those who came before us. Good luck. Try not to be overwhelmed- you can't do it all in a day! Listen to our resident experts like Tillie- they give amazing advice!
Donna

 

[Atsugi]

While wheelchairs CAN fit through a 32" door, 36 is recommended.


VA SAH grant requires 48" hallways.

 

[cheerleader]

Atsugi, you are right that 32-36 inch doorways are recommended by the disabilities act, VA recommendations for the VA grant. But the actual wheelchair measurements can be far less. My hubby has lost lots of weight- so at 125 pounds, the power wheelchair that the VA is having custom built for his size is only 24 inches wide! I was surprised but happy that we don't have to modify all our doorways. The PT lady at the VA assured us that the larger doorways would not be needed. Before one starts modifying doorways, it would be helpful to know the wheelchair width! (Sure there will be more nicked walls, door frames with a narrower door but...... ). Know if we use the grant we would have to widen everything, even if not needed. A real dilemma - do the renovations or wait hoping not to have to tear the house up. Our grant has already been approved but we are holding off. Atsugi, did you use the grant and do all the renovations?
Would appreciate others sharing experiences with major home remodeling during this unwanted journey!
Donna

 

[MaxEidswick]

> Know if we use the grant we would have to widen everything, even if not needed. A real dilemma - do the renovations or wait hoping not to have to tear the house up. Our grant has already been approved but we are holding off. Atsugi, did you use the grant and do all the renovations?

you know you can use the sah grant twice, right?

>Would appreciate others sharing experiences with major home remodeling during this unwanted journey!

me too --- bathrooms, doors, everything. right now the only door in our new house (moving Tuesday) my big fat m300 will go thru is the front door :-(

 

[cheerleader]

Max, that was a question I wanted to call the VA on. Are you saying you can use part of the grant and then do more if necessary, and still under the 68,000$ allotment?
Good for you to be getting a new home, which I'm assuming is more handicap assessible (except for the doors! What will Sandy do when she gets you through that front door? Just leave you there until you are skinny enough to fit through the other doors? Lol
Seriously, if you are "larger" in stature, that's a GOOD thing! Wish my husband had more pounds on him, as it increases length of survival according to our neurologist. Very difficult to maintain a healthy weight with bulbar form of ALS.

 

[MaxEidswick]

>Max, that was a question I wanted to call the VA on. Are you saying you can use part of the grant and then do more if necessary, and still under the 68,000$ allotment?

for sure. I can send you our sah guy's email if you need.

I'll PM a link to the house and a photoshoot i did. It is mostly open. we will put my office in the dining room ...

 

[Atsugi]

did you use the grant and do all the renovations?

Donna, the doctors told me privately that my PALS would not live long enough to wait for us to modify a house. So although we were awarded the grants, did the interviews and had a couple of estimates, we never actually used the grants. We did get a disabled van, though. What a Godsend!

VA sent guys to install temporary ramps without using any grant moneys. It was in the prosthetics department budget.

Our sidewalk from the front door to the driveway was too narrow to be safe for the PWC, so I widened the sidewalk with concrete. That was quite a sweaty job.

Our landlady refused to allow modifications to her house, So I took a sledgehammer and widened our doorways anyway!

--Mike