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
 

affected

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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.
 
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