wifeofgrumpybear
New member
- Joined
- Jul 31, 2016
- Messages
- 3
- Reason
- CALS
- Country
- CA
- State
- ontario
- City
- milton
Hi all - I am new to this forum and new to this role as a care giver to a patient with motor neuron disease. I have been looking for a place to be able to share what I am going through with people who can understand.
My husband and I met in 2009 and married in June 2014. In May 2016, we saw his neurologist who had been treating him for loss of motion/strength in his left hand. The doctor told us that it was likely ALS and referred us to a clinic. The clinic ordered all the tests to be redone and scheduled a follow up for Aug 19th. That is all the communications that we have had. The definitive "you have ALS" has not yet been said. Today, his left hand is all but useless, the function in is right hand is severely compromised and he is experiencing systemic weakness. He hasn't been able to work since April (he worked in a warehouse) and he is able to do less and less on his own because of the lack of function in his hands.
We know a little of what is to come and it preoccupies our thoughts, but in different ways. For him, it is the loss of independence, mobility and quality of life that has him preoccupied. For me, it is knowing that all too soon, I will have to say goodbye to my best friend, my life partner, my soul mate.
It took us both a lifetime to find the perfect partner. When we married, I was 39 and he was 54. I always knew, because of the age difference, that there would come a time when I would need to take care of him - I just thought that I would have more time.
I feel like I am being selfish by concentrating on the fact that I will be left alone. That the one person in my whole life that I have ever been able to connect with in such a profound way is being taken from me in bits and pieces.
I don't really know how I am going to manage what is to come. I know that I love my Grumpy Bear (a term of endearment from the time we met) and that I hate seeing him so frustrated with simple daily tasks. It breaks my heart every time he tries, and fails, to do something as simple as open a can of pop. He hates asking for help.
I know that I haven't actually asked any questions. At this point, I more thought that it might be therapeutic to write down how I am feeling.
Thank you for reading.
My husband and I met in 2009 and married in June 2014. In May 2016, we saw his neurologist who had been treating him for loss of motion/strength in his left hand. The doctor told us that it was likely ALS and referred us to a clinic. The clinic ordered all the tests to be redone and scheduled a follow up for Aug 19th. That is all the communications that we have had. The definitive "you have ALS" has not yet been said. Today, his left hand is all but useless, the function in is right hand is severely compromised and he is experiencing systemic weakness. He hasn't been able to work since April (he worked in a warehouse) and he is able to do less and less on his own because of the lack of function in his hands.
We know a little of what is to come and it preoccupies our thoughts, but in different ways. For him, it is the loss of independence, mobility and quality of life that has him preoccupied. For me, it is knowing that all too soon, I will have to say goodbye to my best friend, my life partner, my soul mate.
It took us both a lifetime to find the perfect partner. When we married, I was 39 and he was 54. I always knew, because of the age difference, that there would come a time when I would need to take care of him - I just thought that I would have more time.
I feel like I am being selfish by concentrating on the fact that I will be left alone. That the one person in my whole life that I have ever been able to connect with in such a profound way is being taken from me in bits and pieces.
I don't really know how I am going to manage what is to come. I know that I love my Grumpy Bear (a term of endearment from the time we met) and that I hate seeing him so frustrated with simple daily tasks. It breaks my heart every time he tries, and fails, to do something as simple as open a can of pop. He hates asking for help.
I know that I haven't actually asked any questions. At this point, I more thought that it might be therapeutic to write down how I am feeling.
Thank you for reading.