New and need guidance

[2daughters]

My dad was diagnosed with PLS a couple of years ago. For reasons I don't need to go into, his current living situation is going to change very soon, and my sister and I intend to have him live in our homes on a shared basis. I live 5 hours away from my dad and my sister's family, so transportation back and forth will be required. My sister and I both have 3 kids at home (and I have a newborn), but we want to make a home for our dad within our own homes. We know he won't feel as comfortable as he would if he could still live independently, but I'm afraid independent living isn't an option. From a caretaker perspective, we are starting at square 1. We both realize we need to make accommodations in our houses to give him a bedroom and bathroom; and we need to make sure there is adequate space for his power chair to move around. I anticipate having space issues with the bathrooms, as well, so we will probably have to address that issue.

This seems like a daunting journey ahead, and I know it's much harder on him than it is on anyone else, so I don't want appear overwhelmed. But the truth is, I'm overwhelmed by how little I know about what I need to do; what equipment I need to prepare for; what remodeling needs to be done; what van we need to get to drive him back and forth; what medical changes are on the horizon and how best to deal with them. In short, I am a planner, and I'm afraid I don't know how to plan for this.

If anyone has guidance or words of wisdom to a newbie starting out, I would love to hear it!

 

[Atsugi]

As a planner, you've got a big advantage. The simple act of planning will put some order in your life that a house full of children have taken away. Research helps the mind focus on something other than pooping, screaming rugrats.

Here's a start, the way I figured it out: How will he get out of bed, pee, wash, brush teeth, dress, transfer to a wheelchair, drive over carpets, change the channel, do whatever he enjoys, go to appointments, get out of the house in a fire, cook, eat, clean up, socialize, attend to whatever ails him (itching, headaches, swollen limbs that need massaging, etc.)

One thing: We joined the YMCA to use their big spacious handicapped family shower room. The Y gave us a "scholarship" reduced rate because our income was low.

Another: Van salesmen brought their vans out to my house so we could try them out. They knew how best to work out discounts and financing.

Added: I prefer the word careGIVER because caretakers work in gardens.

Also: You might want a video/audio baby monitor so you can monitor him. Perhaps a handheld radio or phone, if he can use those, so he can contact you from the TV room or his bedroom when you're napping (from loving those children so much.)

What variety of PLS does he have? Did your dad ever serve in the military?

 

[Atsugi]

Another thought:

When we had nurses come over for several hours, I made a "nurses station" for them. It was a chair and writing table positioned so they could see their patient, but be behind the patient so the patient would not have to see a nurse stare at him all the time.

 

[lgelb]

Very sorry to hear about your dad, Shreveport.

There is an equipment sticky to look at here, and lots of good threads on the planning/accessibility issues. Use the search box top right.

What are his current abilities and what do you feel he needs more help with at the moment?

Best,
Laurie

 

[2daughters]

Thanks for your responses, Laurie and Mike. And Mike, thank you for setting me straight on my terminology! There is an important distinction between caretaker and caregiver, and I definitely want to be the latter! Mike, he was not in the military. Any suggestions on the best van to purchase? We had an opportunity to buy a preowned one from another ALS family, but we acted too late and someone else purchased it first. I know we'll need one in the next 3-6 months, so I need to start looking.

I honestly don't know what variety of PLS he has...? He hasn't mentioned anything more specific than the PLS diagnosis. Laurie, as to his current abilities- he uses a walker to move around his house, and uses a wheelchair outside of the home. But he honestly doesn't get out of the house that much right now. He was fitted for a powerchair yesterday, and we will hopefully have that in the next few months. It has gotten to the point where showering and bathing are difficult without assistive devices, which he doesn't have yet. He obtained some grab bars, but the suction cup diameter is too big to fit over his small shower tiles (the grout lines interrupt the suction)- so we need to find something different. His speech is limited. He can speak slowly for a few minutes at a time before needing to take a break. As for good news, his hands and arms retain full strength.

My husband and I have spent the last week trying to brainstorm over accessibility concerns, and we have some builders coming to the house next week to give us some ideas on what we can do. I will definitely check out the stickies on this forum for assistance. Thanks!