Would't it be lovely if we could wake every morning with these words on our lips and in our hearts? Lately my first thoughts have been on phone calls I have to make, when I can squeeze in errands, and if I need to refill prescriptions or pay bills. If I'm lucky, I'll have time to stretch before I get out of bed (otherwise I move like a rusty tin man).
However, attitude can make or break a person. I am turning over a new leaf, and following the path of positivity. Lord knows, taking care of a family member who has ALS requires as much positivity as possible. So, my morning mantra now is,
My to-do list? It is more of a suggested path to follow each day. It's not written in cement, because plans can change like the wind without a moment's notice. All it takes is an unexpected nap at an inconvenient time...a day spent in the bathroom with no luck...or too much luck! Instead of being frustrated, I need to let it go, and move "the leftovers" to the next day's "path to follow" list. I read somewhere that if you feel overwhelmed by all the things you "have to do", make your list and check off just three things. That's it, just three. You will feel like you've accomplished something, but not feel pressured to finish it all.
Meanwhile, Bill has declined more rapidly than I imagined. It's only been a year and a half since diagnosis, and he has become too weak to walk. He can stand only with support, but not for long. Thank God we got a shower/toilet chair just in time. Of course, that means that any time he needs to go to the bathroom, I'm on call, morning noon and at o'dark-thirty.
He has lost over fifty pounds since diagnosis. He is skin and bones, and wears a jacket in the house, unable to generate enough heat to warm his body. When I married him 40 years ago, he weighed 126 lbs, but he was 22 years old and it was all muscle. I miss that man, but at least I can still make him smile. He has a brilliant smile that lights up his face. It's what made me fall in love with him, and what's kept me falling in love with him over the years. It's what I'm going to miss when he's not around.
This photo was taken shortly after his diagnosis was confirmed. We thought we should take a family vacation sooner rather than later. If there's one piece of advice I can give to those who have just been diagnosed, get out and go where you've always wanted to go; do what you've always wanted to do; see the people you've always wanted to meet or visit.
This disease can sneak up on a person, or it can pounce on one. We decided to take a cruise with another couple, even though Bill took his wheelchair (not powered). It was a Godsend and a curse. Yet we enjoyed the company, the Caribbean and the time away from home and doctor appointments.
Now, Bill rarely goes out except for doctor appointments. most of those are through home-based care. We are lucky to have a handicapped-equipped van, but he doesn't enjoy riding in it. Friends and family don't have handicap-accessible homes. About the only place he'll go is to Home Depot (it's a guy thing) and the medical cannabis dispensary (only because we forgot to put me down as the caregiver on the state application). Yes, they just opened up medical cannabis to people with ALS. It took a couple months to get his ID card, but we live in the strictest state in the US when it comes to licensing. Check out your state's Department of Public Health if this is something you would like to look into.
So at this time in my life, I need that attitude adjustment. I need to stay positive, because I see a lot of negative headed my way. If I don't count my blessings and "let it go", my self-control will be let go, and it won't be pretty. And my hubby won't be there to pick up my pieces.
Meanwhile, Bill has declined more rapidly than I imagined. It's only been a year and a half since diagnosis, and he has become too weak to walk. He can stand only with support, but not for long. Thank God we got a shower/toilet chair just in time. Of course, that means that any time he needs to go to the bathroom, I'm on call, morning noon and at o'dark-thirty.
He has lost over fifty pounds since diagnosis. He is skin and bones, and wears a jacket in the house, unable to generate enough heat to warm his body. When I married him 40 years ago, he weighed 126 lbs, but he was 22 years old and it was all muscle. I miss that man, but at least I can still make him smile. He has a brilliant smile that lights up his face. It's what made me fall in love with him, and what's kept me falling in love with him over the years. It's what I'm going to miss when he's not around.
This disease can sneak up on a person, or it can pounce on one. We decided to take a cruise with another couple, even though Bill took his wheelchair (not powered). It was a Godsend and a curse. Yet we enjoyed the company, the Caribbean and the time away from home and doctor appointments.
Now, Bill rarely goes out except for doctor appointments. most of those are through home-based care. We are lucky to have a handicapped-equipped van, but he doesn't enjoy riding in it. Friends and family don't have handicap-accessible homes. About the only place he'll go is to Home Depot (it's a guy thing) and the medical cannabis dispensary (only because we forgot to put me down as the caregiver on the state application). Yes, they just opened up medical cannabis to people with ALS. It took a couple months to get his ID card, but we live in the strictest state in the US when it comes to licensing. Check out your state's Department of Public Health if this is something you would like to look into.
So at this time in my life, I need that attitude adjustment. I need to stay positive, because I see a lot of negative headed my way. If I don't count my blessings and "let it go", my self-control will be let go, and it won't be pretty. And my hubby won't be there to pick up my pieces.
