CALS Roll Call Continued

lgelb

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Two sets is pretty common. I agree that the attendant control on the back works better in a lot of situations. So whether you consider head control or eye gaze, I would have them set that up. It does not take long and should be covered by Medicare.
 

Jrzygrl

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Since the rep moved the joystick that my DH could no longer use, there was zero cost involved. Moving it was just included as part of the head controller installation.
 

Mary2

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Thank you all for your input. The wheel chair company says they can arrange attending controls for me. I asked how much iDrive costs if we wanted to start with a head control for PALS and have Medicare pay for that and then pay for iDrive out of pocket later on if need be. I was informed iDrive would be $6500.00 dollars. So I guess we won't be going with that particular plan!
 

vltsra

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Mary we have a head control unit but my PALS really didn't like it. I have an attendant control in the back but I'm not very good at driving that way. I tend to walk next to him if I need to drive the chair. He can still manage a little bit if we tape his fingers.
 

Mary2

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Thanks V and everyone. This issue is still up in the air because we have not had a decision about the eye gaze as of yet. Otherwise we are going along with small changes but nothing drastic. We watch baseball, listen to audio books, and look at our computers. I seldom go out, mostly because of the heat.
 

vltsra

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We've had a tiring and emotional couple of weeks. My husband's friend found a buyer for his 1976 sports car. The guy flew out from Ohio last weekend and was completely enthralled with the car. He spent his time cleaning the car and doing some prep work to ship it. I'm going to be coordinating that. When my husband finally went downstairs to see the car he cried.

The priest was here yesterday to talk to him and answer questions. Apparently the caregiver has been interjecting her beliefs and telling him he cannot be on hospice. The priest sorted him out and we said a blessing. And then I cried. I know he's trying to prepare himself but I can't imagine him not being here.

V
 

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Oh V - I hope you can sort out to have this caregiver able to help you but prevent her from saying another word. It truly gets me deeply when people put their beliefs on another person, especially someone vulnerable.

Selling that car would be hugely traumatic for him, but I'm glad it isn't left for you to do later.
Coming to acceptance can be very hard. I'm so glad you can talk it through here where we all get it.
 

lgelb

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That sounds so hard, V. Passing on what you love -- in my husband's case, it was his guitars -- is where the road forks. Totally agree how inappropriate the caregiver is being.

Maybe it's not preparing for the end exactly, but being totally aware that the road will end. These are the days in which you want to be present for every moment, good and bad.
 

Mary2

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I have a baby monitor in my room so I can hear PALS at night. I can't hear everything that is said when the caregiver is with PALS, but knowing there is a baby monitor might be a deterrence for the Caretaker.

Parting with the car is very sad. Your husband is to be admired for going through with the sale and making your load a little lighter for the future.

We did speak with a palliative care nurse. She wrote the prescriptions we needed and also the drugs if there were to be an air hunger attack. She is retiring unfortunately and the company is trying to find a NP that will make house calls Thank you again for the palliative care suggestion.
 

andrewf

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New CALS here. I guess kind of like a baby-CALS. My Father In law is 78 and has leg-onset ALS. He and my mom-in-law have been living in our house since late June while they have awaited a ramp and stairlift install (rentals) at their home. They are only 10 miles from us at least. Stairlift went in last Tuesday. Ramp is in. Sunday, tomorrow,they are supposed to move back home. But my MIL in incapable of really providing end-to-end transport of FIL....to doc or elsewhere. Maybe. We are working out some operational concepts and procedures. They have some adapting to do since I cannot get there and be that all the time. Fortunately I have gotten all the paperwork filed with PVA to get him VA benefits and health care started. I'm watching his "progress," albeit it is slow, but the fact is at some point he will not be able to use the walker to get to the stair chair anymore. And who knows when that will be.... I’m worried for his mental health. His mind is fine. But he likes to be active and ALS has brought ennui.
Old people have stuff come up ALL the time and need to see doctors, and they never kill 2 birds with one stone. As in “Look at my foot abrasion issue AND my vascular flow on the same day”.
Anyway the situation is just ticking away until he cannot walk anymore (months? A year or more? Who knows!) and then…reset and adapt I guess. At least he does not have dementia.
 

Mary2

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Sounds like your doing a great job as a CALS Andrewf, having your Father in law in your home, getting the VA paper work going, getting the ramp and stairlyft installed. Way to go! Do you have a walker for the second floor for when he gets to the top of the stairs?
Any chance the VA will provide funds so you can have a hired caretaker go with your in-laws to the doctors? Caretakers are often allowed to drive. The agencies I have used will let the caretaker drive your in-laws vehicle or they can have your in-laws go in their vehicle. It might be worth signing up with an agency, so that when you need someone you will already be affiliated with an agency.
Just ideas...your doing great!
 

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Welcome to the thread Andrew. Have you read the sticky on Anticipatory planning? That may help a little as you think further ahead than your FiL and MiL may be able to at present. It's a fine balance.
We will answer questions as we can.
My husband was rapid progression bulbar onset, and he had the FTD (dementia) that often goes with ALS.
 

Mary2

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Waiting for the eye gaze approval is getting troublesome. My one regret may be we didn't look for a used one months ago. He struggles so much with the dictation software and I am so tired of hearing him yell at it and say click, click, click over and over again.
He just wants to send emails to communicate with people and to read/listen to some news or listen to some sci-fi books.
His needs really aren't that complicated.

Also he is sometimes not having the caregiver wash him, because it tires him to take his jersey off. Tonight I ordered hospital gowns for him to wear over his pants. Does anyone have any other suggestions for what he should wear. I might have to make my own gowns for him. The patterns on these gowns are really bad in my opinion!

The caretaker does dishes, mops the floor and folds laundry, and I appreciate this, but when I discover PALS has not been washed from the waist up (I do the waist down) I get so frustrated.

I started looking at a break away at the beach for October 2023. It would give me something to look forward to, but between the risk of COVID and not knowing how long he will need care, I don't dare put down the deposit.
 

Mary2

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I put down the deposit on the trip to the beach. I have until August 2023 to cancel and thought I worry about it then.
 

lgelb

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Mary, can't the caregiver help him undress for a wash? There are also adaptive shirts with snaps in the back, that make assistance easier. Or just regular jerseys with front zips or snaps, of course.

As far as using the computer to send emails, if he has enough strength to speak, can he use a chin/tongue mouse like the TetraMouse (plugs into a USB port) presuming he can no longer keyboard?
 
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