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vltsra

Distinguished member
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Joined
Nov 12, 2015
Messages
460
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Yesterday we had an appointment with the speech therapist and rep from Talk to Me Technologies about getting my husband set up with assistive communication. Unfortunately I screwed somehow because I didn't get the speech therapist's email telling me the rep would come to our house, and she texted me to remind me 45 minutes before the appointment while we were getting my PALS into the van. It's not like he can just walk out the door and get in the car. So we showed up at her office...

Anyway I'm glad we were able to go and the rep drove back to the office from our house to meet with us. My PALS liked the system and is excited about getting the equipment as he will be able to text again. It has meant a lot to him over the past 5 years to be able to communicate with friends and now I am having to send all of his texts. Sometimes he is even unintelligible to me. Still, it's going to be another adjustment and another loss.

He is now having issues with his caregiver and I'm so overwhelmed I'm not sure what to do. Over the past 2 weeks I have asked him repeatedly if he wants me to find someone else as he complains frequently, but he says no, she is fine. He was thrilled with her at first. He can be high maintenance in general and I sense she is frustrated as well. She complained to me today about him as I was trying to deal with a work deadline. It's hard because I must handle everything...both of our businesses (which admittedly have scaled down dramatically), our household, the broken sprinkler system in the back, the alarm system that stopped working when we had the bathroom redone, his rental that needs an electrician and a plumber, along with caring for him. The thought of finding a new caregiver, and doing all myself in between, is daunting at best. I feel at times that I can barely make it through each day. I will discuss it with him again this weekend when the caregiver is off and we'll see what he says. No caregiver is perfect; he complained about the last caregiver also so it might just be trading one set of problems for another. He has told me that he wanted to set up cameras in the house so I can monitor the situation at all times. I am here in our household most of the time and I don't see abuse so I don't know if he is being paranoid or what. I have seen this personality trait before and perhaps his feeling of helplessness is just exacerbating it.

Life with ALS...sigh...

V
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
634
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Sending big hugs, V!

I'm glad that he is getting his new communication system. I was lucky that my DH kept his speech til the end. It must be very frustrating.

Sorry to hear about the caregiver. We had one for a very short time who didn't work out. The second one, who stayed with us the rest of his life was an angel. We just lucked out, she was coming off maternity leave. She was only here 2x a week, but that helped me stay (somewhat) sane.
You've got an awful lot on your plate! Maybe things will get better once he gets his communication device? Could that be contributing to the situation? Hopefully the caregiver issue is something that can be worked out and you won't have to find a new one.
 

lgelb

Moderator
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Joined
Nov 5, 2009
Messages
8,908
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Lost a loved one
Diagnosis
00/0000
Country
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State
WA
City
Seattle
Wow, you are a superwoman, V.

I think you are right at root -- when we can't control most things, we tend to seize on what we can, or think we should, whether we need to or not.

Maybe in a huddle, you could get him and the caregiver to jointly agree that they will try to stay anchored to the other's perspective, and acknowledge to each other that they are in a difficult situation and can only do their best.

And maybe when he regains some communication abilities, he can do some Facetiming or whatever with tradespeople when they are on site and have some line of sight/input on the various repairs your properties require.
 

vltsra

Distinguished member
Forum Supporter
Joined
Nov 12, 2015
Messages
460
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Thank Jrzy and Laurie. I am no superwoman! We CALS all have to take on more than we ever thought possible.

An update, the sprinkler is fixed, the alarm is working now. Work deadline met and an order from my husband's waning business filled and ready for pickup. The rentals are being taken care of. I also took his glasses in and the guy at the shop fixed them for free, I almost started to cry.

My PALS and the caregiver seem to have worked out their differences at least for now.
He said they were doing fine yesterday. I talked to him last night and told him caregiving is a difficult and unglamorous job, and this woman earns points from me because she willingly cleans him after toileting. I told him that if we get to the point where I need to install cameras to monitor her that it's time for a new caregiver and not for cameras. He agreed with everything I said.

This morning he was very down, told me he feels he has a limited number of days left. I told him we have to live each day for itself. I took him to the park and fed him tacos and then we went for a walk along the shore. While he struggled and seems weaker to me this past week he had a smile on his face when we arrived home. For that alone I'm glad we went through the pain of installing the elevator and buying the van.

Thanks for the encouragement

V
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
634
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Awesome that you checked-off so many boxes. And unexpected kindness is always appreciated.

I am a firm believer that fresh air is good for the soul. So glad you had a good day!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,691
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
V I'm so glad you got on top of so many things by the end of the week! At least for this week.
This disease keeps on giving, but you doing a mighty job of just moving through every thing every day.
I'm glad you can vent here - there are so few who can understand what CALS do in any given day, let alone a whole week.
I love that you were able to do something of quality to end the week, and have him come up smiling. That definitely paid for the elevator and van all in one go. You can now consider every outing and smile as a result from now onwards is a super bonus. May your bonuses overflow 💜
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
553
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
V, I remember so clearly how overwhelming a CALS job can be. You are doing an amazing job.

Sharon
 

Jlynn

Distinguished member
Joined
Mar 16, 2016
Messages
401
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
City
Wolfeboro
V....your doing great. Beyond great. And yes...you are super woman in my book.
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
979
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
V, you sound like a fantastic caregiver. Your love for your PALS emanates from your post. Please remember what a wonderful job you're doing and how you are making your PALS life a little bit easier. So glad things have ironed out a bit over the last couple of days.
 
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