kingsmad
New member
- Joined
- Oct 26, 2013
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 07/2013
- Country
- US
- State
- maine
- City
- dixmont
I am new here, my husband was initially diagnosed with ALS on July 17, 2013. Sometimes it seems like it was yesterday, sometimes it seems like a million years.
The first symptom was right footdrop in March. He thought that he had something wrong with his ankle...then he thought it was his hip. Or maybe his back.
His Dr thought he might have some sort of arterial blockage. the chiropractor was the first to say ALS.....we were scared, but didn't want to believe it.
the Dr. decided that it wasn't a blockage, and sent him for a lumbar MRI. it came back fine. he was sent to a neurologist who tested for Lyme disease and sent him for a cervical MRI, along with a bunch of other blood and urine tests.
Then we went to see the neurologist for the results. he said the three letters none of us wanted to hear.
He said that Dennis had about 18 months. We thought that was bad, but we thought that he probably had a year of being somewhat mobile, with the use of a wheelchair....boy were we wrong!
two weeks after diagnosis he began using a walker; it was truly fortunate that someone gave it to us.... two weeks later he was in a wheelchair, and has not been able to stand since.
I was preparing his meals and putting them in a lunch bag for him. I would come home and look to see what he had eaten. everything was gone....I later found out he was feeding it to the dog. He was losing weight constantly. he was also getting weaker. I had to transfer him to the wheelchair, the lift chair, the commode, the bed. anywhere he moved, I moved him.
we had come to the conclusion early on that our home was not wheelchair friendly (it's an older mobile home) and made the move to get a new doublewide.
On Labor Day weekend we went to a family gathering, and moved out of our home. we were going to stay in a camp that belongs to one of his sisters. I ended up staying there as he was admitted to the hospital. He was there for the entire month of September. During that time things continued to go downhill. the only positive thing is that we have gotten a confirmation of the diagnosis. we also got a feeding tube, a tracheostomy and a ventilator.
when he was released we were supposed to go to his sister's house, but her leukemia is no longer in remission and we are at his mothers home.
we have come across many stumbling blocks on the road to getting into our new home, but should be moving in by Thanksgiving (I hope!)
as if this isn't bad enough, the hospital discharged him before they should have. His paralysis and ventilator qualify him for in home care 158 hours per week. the nurses should have been in place before discharge...instead the 'family' agreed to care for him so that he could go 'home'......I got all overnights, and they agreed to cover the days. a plan that fell apart on the day of discharge. No one can make it on time in the morning so that I can get to my job on time, and they always ask me when I'll be back.
I began thinking I would have 7 twelve hour days; I've had 72 hour 'shifts' because people had other things to do, and he's only been out for 27 days! last week I had all but 46 hours. It's too much, and still they want me to do more. I have to work. we need money!
the nurses started last week, of course they are taking all of the daytime shifts....everything is covered from 7am to 11pm. that's awesome, but no one has offered to do an overnight....there is no where I can sleep in this apartment besides in the room where my husband is.
The best part of this whole mess is that both my husband and I have come to realize that his mother is suffering from dementia.......and won't admit it. I'm lying, her husband is suffering from dementia (step dad) her ex is losing it.....but she is fine and normal....I am going crazy! I am sorry for the length of my post, but once I got started I couldn't seem to stop!
I know that this disease is hard for everyone; those who have it, their spouses, children, siblings, parents, friends, and even co workers; but I am feeling really overwhelmed. Things have happened so fast that I have barely had time to catch my breath; everyone is looking to me to help them figure out how to deal with this. Don't I deserve a little consideration? I feel like I am in an insane asylum.
The first symptom was right footdrop in March. He thought that he had something wrong with his ankle...then he thought it was his hip. Or maybe his back.
His Dr thought he might have some sort of arterial blockage. the chiropractor was the first to say ALS.....we were scared, but didn't want to believe it.
the Dr. decided that it wasn't a blockage, and sent him for a lumbar MRI. it came back fine. he was sent to a neurologist who tested for Lyme disease and sent him for a cervical MRI, along with a bunch of other blood and urine tests.
Then we went to see the neurologist for the results. he said the three letters none of us wanted to hear.
He said that Dennis had about 18 months. We thought that was bad, but we thought that he probably had a year of being somewhat mobile, with the use of a wheelchair....boy were we wrong!
two weeks after diagnosis he began using a walker; it was truly fortunate that someone gave it to us.... two weeks later he was in a wheelchair, and has not been able to stand since.
I was preparing his meals and putting them in a lunch bag for him. I would come home and look to see what he had eaten. everything was gone....I later found out he was feeding it to the dog. He was losing weight constantly. he was also getting weaker. I had to transfer him to the wheelchair, the lift chair, the commode, the bed. anywhere he moved, I moved him.
we had come to the conclusion early on that our home was not wheelchair friendly (it's an older mobile home) and made the move to get a new doublewide.
On Labor Day weekend we went to a family gathering, and moved out of our home. we were going to stay in a camp that belongs to one of his sisters. I ended up staying there as he was admitted to the hospital. He was there for the entire month of September. During that time things continued to go downhill. the only positive thing is that we have gotten a confirmation of the diagnosis. we also got a feeding tube, a tracheostomy and a ventilator.
when he was released we were supposed to go to his sister's house, but her leukemia is no longer in remission and we are at his mothers home.
we have come across many stumbling blocks on the road to getting into our new home, but should be moving in by Thanksgiving (I hope!)
as if this isn't bad enough, the hospital discharged him before they should have. His paralysis and ventilator qualify him for in home care 158 hours per week. the nurses should have been in place before discharge...instead the 'family' agreed to care for him so that he could go 'home'......I got all overnights, and they agreed to cover the days. a plan that fell apart on the day of discharge. No one can make it on time in the morning so that I can get to my job on time, and they always ask me when I'll be back.
I began thinking I would have 7 twelve hour days; I've had 72 hour 'shifts' because people had other things to do, and he's only been out for 27 days! last week I had all but 46 hours. It's too much, and still they want me to do more. I have to work. we need money!
the nurses started last week, of course they are taking all of the daytime shifts....everything is covered from 7am to 11pm. that's awesome, but no one has offered to do an overnight....there is no where I can sleep in this apartment besides in the room where my husband is.
The best part of this whole mess is that both my husband and I have come to realize that his mother is suffering from dementia.......and won't admit it. I'm lying, her husband is suffering from dementia (step dad) her ex is losing it.....but she is fine and normal....I am going crazy! I am sorry for the length of my post, but once I got started I couldn't seem to stop!
I know that this disease is hard for everyone; those who have it, their spouses, children, siblings, parents, friends, and even co workers; but I am feeling really overwhelmed. Things have happened so fast that I have barely had time to catch my breath; everyone is looking to me to help them figure out how to deal with this. Don't I deserve a little consideration? I feel like I am in an insane asylum.