He can some some things but refuses. His right side is numb but he can hold some things. He had a brain bleed four years ago. And it affected his right side plus he has md. He is 72. He like to be waited on. I work 10-12 hours a day. He doesn't understand I'm tired.
In all honesty, i am just thanking God every day that my husband can do the basics (eat, toilet, shave, dress) for himself. I dread the first mini-stroke when that will all end.
But until that time, I am getting by very well with tons off gratitude. I am grateful for so many things.
The hardest part for me is not doing for two people, it is the perception by others that I am the mean one, or even that in their uninvolved opinion he can do more than I know he cannot at times. Looking in from the outside with judgment on the caregiver can hurt, and cut deep. But then, I realize that my efforts on his behalf make him look really good. Its just that I am looking haggard.
Wish I had patience to explain each time. It must be aspergers.
You touch on a really interesting conundrum: when is a person no longer capable of s.th. and how do we perceive it. Once I truly understand that my husband (82 and 17 years older than me) cannot do s.th., then I am cool with it. But there is a terrible period that can be called: "Waving goodbye to Responsibility." It is constant change, constantly less for him to do, and constantly more for me. I cannot help but be angered but i try to understand that we are just on the moving sidewalk of old age. I would estimate that one thing each week transfers from him to me.
sometimes that really scary part is that he isn't ready to transfer s.th. that he can no longer does well---like drive the car. He hasn't driven in over a year but wont' admit that it is over and still wants to drive. that is very hard. Or, paying some bills and doing it late and getting penalties. etc,. etc.
I am trying to regard this chapter of my life as just that: a chapter. it will be over and on to the next chapter someday, and I want to be able to look back and know that I did a good job, that I was kind and helpful, that I left nothing undone, that I did my best.
This is one thing that really gets to me ... I don't mind doing something that a person cannot do for themselves, but the have to step in constantly for things that are THEIR responsibility is very aggravating.
I began to notice about a year ago or a tad more that my husband (suffering from a blood disorder) was actually happy to let me do things for him rather than to do them himself. For only one example, let me go pick up his prescriptions. That was a change, and I asked myself: ok, how far is he going to take this?
In roughly six short months the answer was in: He was going to take it all the way. I am now in charge of everything. I must oversee everything. I must identify where there are problems that need to be fixed. I must fix or have them fixed. I make all appointments, see that we get there, check and order prescriptions, etc., etc., shop, cook, set the table, clear the table, wash the dishes, do the laundry and the garden, raking, pruning, the car to the mechanic. I make all phone calls and e-mails--he can no longer do these things.
I have a new understanding of the phrase: doing the best he can. This is not my former husband. He would never do this to me or to anyone. So, I have gotten past the anger. I do feel frustration at times. But I understand this: it is up to me to make this doable. And lately that has meant changing the way I do things. I now cook super simple meals that do not take me more than 10-15 minute in the kitchen. I make a lot in advance, like pot roast or spaghetti sauce, or big piles of mixed vegetables so that I just have to warm things up.
The other day, he wanted to know if I was going to do laundry. He had laundry to do. I asked politely and kindly why I had to do it. And, after a moment of silence, he went off and did it himself.
Recently, I have also decided that less than perfection is fine. If he starts a sentence and doesn't finish it, I just let it go. I don't want to know the end of the sentence because it might be a request. We don’t talk a lot anymore because there are so many unfinished sentences--and I am ok with that. I try to DO things with him. We take rides, walk the beach, play with the dog, watch Netflix.
I intend to continue to seek out ways to change our lifestyle to make it less work. Stay tuned. You’ll be hearing from me.
Then I remembered the Serenity Prayer- God Give me the serenity to accept those things I cannot change, the courage to change the things I can, and the wisdom to know the difference. My mantra the past few years has been "It is what it is, but it will become what you make it". It's on a small plaque that I got from one of my catalogs. And yes it is still VERY hard to remember these in the wee hours of the morning or changing smelly diapers, or scooping poop off the floor. At least he still feeds himself. Good luck!
webmd/children/understanding-muscular-dystrophy-treatment
Does he receive physical therapy?
Is that what you meant?