michelleann80
Member
- Joined
- Sep 12, 2015
- Messages
- 21
- Reason
- CALS
- Diagnosis
- 09/2015
- Country
- US
- State
- NC
- City
- Clemmons
Hello! I haven't been on the forums in quite awhile. Tonight I decided to log on and thought I would share some of what I am feeling, since you know all to well what I am going through.
Quick background.. my husband (PALS) was dx'ed Sept 2015, he is currently 40 years old. Since then we have gone through a cane, forearm crutches, to now the wheelchair. Just a manual one for now. Up until about 2 weeks ago, he could transfer himself- but can no longer do that. So right now, I am transferring him from his wheelchair, to bed and to the toilet and shower bench.
We have a clinic appt. on 1/11, where I am going to ask if they have a hoyer lift in the loan closet we can borrow. Every 3 months something there is a HUGE life altering development to report to the clinic. I know ALS can change quickly, but come on!
I have also been recently introduced to bathroom accidents. Thank GOD my stomach is stronger than I thought it was. He has kindly agreed to wear depend type bottoms just in case of an accident.
We had a $8k barrier free shower installed. Really? 8k? Totally being financed, and will be paying that off forever. Had to do it so he could shower. What other choice did we have?
His hands are starting to curl, although he still does have some upper body strength which is great. His breathing seems to be normal right now.
He never ever wants to leave the house, for various reasons. Not sure how I feel about that. I ask every time I go somewhere if he wants to go, he does not. I pick my battles and figure if he wants to go, he will go, no sense in trying to force him to leave the house.
I am scared. Things are changing and I am scared I am not going to be able to do everything I need to do for him, and do it well. I am so very thankful I work at home, so I am here during the day. There would be no way I could be gone for 8 hours a day. As of right now, I am afraid to leave him home alone just to go to the grocery store.
He has had some moments, a couple where he has broken down and cried. As hard as it was to see him like that, I was glad. Because finally he was showing some emotion about this. He has always had the attitude, can't do anything to change it, it is what it is.... So, I think it did him some good to feel and cry and just let it out. Do you know what I mean?
Everyone asks me if I need any help, is there anything they can do. I appreciate it, but nothing now. Not really anyways. Most of the things he needs done now, are very personal- and I am telling you right now he is not at the point where he is ok that anyone but me is doing that stuff. And, for now I can handle it. But I do know as time goes one, we will have to have some help. Talking to him about these things here recently. He totally understands, which I am thankful for.
The thing that scares me the most is, he does not want any sort of intervention. Nothing. So what will happen? His mom asks me...I don't know! Really need to have these discussions at our next clinic appt. The unknown is so frightening.
I really really really hate ALS. Thanks for listening (reading)! I really just felt the need to type all this out.
Thanks again!
Michelle
Quick background.. my husband (PALS) was dx'ed Sept 2015, he is currently 40 years old. Since then we have gone through a cane, forearm crutches, to now the wheelchair. Just a manual one for now. Up until about 2 weeks ago, he could transfer himself- but can no longer do that. So right now, I am transferring him from his wheelchair, to bed and to the toilet and shower bench.
We have a clinic appt. on 1/11, where I am going to ask if they have a hoyer lift in the loan closet we can borrow. Every 3 months something there is a HUGE life altering development to report to the clinic. I know ALS can change quickly, but come on!
I have also been recently introduced to bathroom accidents. Thank GOD my stomach is stronger than I thought it was. He has kindly agreed to wear depend type bottoms just in case of an accident.
We had a $8k barrier free shower installed. Really? 8k? Totally being financed, and will be paying that off forever. Had to do it so he could shower. What other choice did we have?
His hands are starting to curl, although he still does have some upper body strength which is great. His breathing seems to be normal right now.
He never ever wants to leave the house, for various reasons. Not sure how I feel about that. I ask every time I go somewhere if he wants to go, he does not. I pick my battles and figure if he wants to go, he will go, no sense in trying to force him to leave the house.
I am scared. Things are changing and I am scared I am not going to be able to do everything I need to do for him, and do it well. I am so very thankful I work at home, so I am here during the day. There would be no way I could be gone for 8 hours a day. As of right now, I am afraid to leave him home alone just to go to the grocery store.
He has had some moments, a couple where he has broken down and cried. As hard as it was to see him like that, I was glad. Because finally he was showing some emotion about this. He has always had the attitude, can't do anything to change it, it is what it is.... So, I think it did him some good to feel and cry and just let it out. Do you know what I mean?
Everyone asks me if I need any help, is there anything they can do. I appreciate it, but nothing now. Not really anyways. Most of the things he needs done now, are very personal- and I am telling you right now he is not at the point where he is ok that anyone but me is doing that stuff. And, for now I can handle it. But I do know as time goes one, we will have to have some help. Talking to him about these things here recently. He totally understands, which I am thankful for.
The thing that scares me the most is, he does not want any sort of intervention. Nothing. So what will happen? His mom asks me...I don't know! Really need to have these discussions at our next clinic appt. The unknown is so frightening.
I really really really hate ALS. Thanks for listening (reading)! I really just felt the need to type all this out.
Thanks again!
Michelle