- Joined
- Nov 12, 2015
- Messages
- 658
- 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
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