- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
First, let me say at the moment we are blessed and have little to complain about. Brian wears orthodics and does not walk more than say about a block without rest. Standing is hard on him for sure. He uses a bath chair to do things like wash his hair in the shower because he gets "rubbery" legs and vertigo otherwise. He has weakness in his left hand too, but not yet super disabling weakness. We are about 7 months out from his first "official" symptom and 2.5 months post diagnosis, so I do feel we are blessed.
What has changed in our daily doings is: Brian no longer mows our lawn, it is way much with the hills, etc. I make breakfast/feed animals/do dishes in the morning and at dinner (he is retired, so he did these things previously). A lot of this is because the Rilutek makes him sort of dizzy and sickish for about an hour after he takes it so he is not up to that morning hustle. It is also though the standing, and the bending over to feed animals.
He still insists on doing laundry, vacuuming floors, and other things around the house I wish he would stop because it drains him now, but I also understand it's important to him to do as much as he can as long as he can. I know he can't shovel snow this winter, but he does not know that yet. We will cross that bridge when it flies I guess.
This morning I woke up to do the breakfast drill (feed dogs, make coffee, do dishes, make breakfast, open blinds, turn news on, all trying to do it pretty much as he always did, and he is fussy) and realized we had just two eggs. We eat eggs every morning and Brian always kept track of the eggs. Now I screwed that up. SO, I made his breakfast because he gets feeling REALLY bad if he does not eat pretty much exactly that one hour after the Rilutek. I crave eggs in the morning so after I got him fed I jumped in the car and grabbed a drive through Egg McMuffin. I started crying on the way home in the car.
I miss Brian doing the morning routine. I am sorry I did not see we were running out of eggs. I am sorry my same husband who built our triple garage and shed needs to put his orthodics on every morning and needs my help. It's not much, I realize. I think of the PALS and CALS who can only dream of all we still, of mornings like ours.
Yet I also know that in the end we all come to the same end, albeit through varying paths. When I see how disgusted and sad Brian is made by even the slightest loss of his abilities to do things, I fully see how he will carry out his wishes for the end of this in his own time. It's sooner than I would chose but I need to respect whatever he chooses.
Now, I need to go clean my 80 year old mother's apartment. She has had a time acknowledging that she needs help. FINALLY, that is happening, and in a few weeks I have a cleaning person starting for her but today it falls on me. Brian is insisting on helping. He needs rest, he has overdone this week but he will come and help and overdue some more no doubt. I also get to see how what was once so easy for him comes now with difficulty, again.
ALS sucks a long while before it gets really disabling, nothing good to be said for this beast. I will snap out of this, but this morning it is just plain hard.
What has changed in our daily doings is: Brian no longer mows our lawn, it is way much with the hills, etc. I make breakfast/feed animals/do dishes in the morning and at dinner (he is retired, so he did these things previously). A lot of this is because the Rilutek makes him sort of dizzy and sickish for about an hour after he takes it so he is not up to that morning hustle. It is also though the standing, and the bending over to feed animals.
He still insists on doing laundry, vacuuming floors, and other things around the house I wish he would stop because it drains him now, but I also understand it's important to him to do as much as he can as long as he can. I know he can't shovel snow this winter, but he does not know that yet. We will cross that bridge when it flies I guess.
This morning I woke up to do the breakfast drill (feed dogs, make coffee, do dishes, make breakfast, open blinds, turn news on, all trying to do it pretty much as he always did, and he is fussy) and realized we had just two eggs. We eat eggs every morning and Brian always kept track of the eggs. Now I screwed that up. SO, I made his breakfast because he gets feeling REALLY bad if he does not eat pretty much exactly that one hour after the Rilutek. I crave eggs in the morning so after I got him fed I jumped in the car and grabbed a drive through Egg McMuffin. I started crying on the way home in the car.
I miss Brian doing the morning routine. I am sorry I did not see we were running out of eggs. I am sorry my same husband who built our triple garage and shed needs to put his orthodics on every morning and needs my help. It's not much, I realize. I think of the PALS and CALS who can only dream of all we still, of mornings like ours.
Yet I also know that in the end we all come to the same end, albeit through varying paths. When I see how disgusted and sad Brian is made by even the slightest loss of his abilities to do things, I fully see how he will carry out his wishes for the end of this in his own time. It's sooner than I would chose but I need to respect whatever he chooses.
Now, I need to go clean my 80 year old mother's apartment. She has had a time acknowledging that she needs help. FINALLY, that is happening, and in a few weeks I have a cleaning person starting for her but today it falls on me. Brian is insisting on helping. He needs rest, he has overdone this week but he will come and help and overdue some more no doubt. I also get to see how what was once so easy for him comes now with difficulty, again.
ALS sucks a long while before it gets really disabling, nothing good to be said for this beast. I will snap out of this, but this morning it is just plain hard.