What really sucks is that no matter how many things you do to keep yourself busy you are still kind of forced to be alone as the spouse of a chronically ill person. I want so badly to go dancing with a man. To go on little adventures together instead of just sitting in the house with a blaring TV in order be with him. . . and him dozing in and out of sleep anyway. I am very lonely. Friends just don't fill the spouse gap. I think I will always be mad at him for not caring enough about my quality of life to even TRY to take care of his health so he can do things with me. He has given up on life. And in doing so, because I will not go the route of having an affair in order to have some of that which I miss so badly, he has made it so my life is now relegated to a sad and depressing and weird home life. WAY more sedentary then if I were alone or with a spouse who even just cared to TRY to consider somebody else beside himself.
I get this. More than anyone can imagine. I used to do ballroom dancing. I want nothing more than to go dancing. But it's not going to happen.
Being a caregiver is an extremely lonely task. Not only do friends not fill the spouse gap, they often don't get it. Especially if the spouse is capable of putting on a good front for a short period of time.
I have my sisters. They get it. They totally understand. But I can't go dancing with them! LOL!
Yes, he has given up on life. But I refuse to. I am fighting tooth and nail and refuse to go down with this sinking ship!!! We are camping. I am forcing him to get out and go and yes, it may kill me before it kills him, but we are doing it!
We just got back from a 3 week trip to the ocean. I LOVED it! I took long walks on the beach. I hunted for rocks and driftwood. I sat and watched the waves. I went to little boutiques and gift shops in beach communities.
He sat in the camper and watched movies. He was perfectly content.
HOWEVER - it was not utopia by any means. He has had the worst case of ketoacidosis and that sweet, sickening acetone body order just about did me in confined with him in the vehicle driving home! I kept suggesting that he drink more water. He definitely needed to hydrate. I almost choked at night with the smell in the camper. I'd crack my window open and breathe in the fresh night air. If you have never experienced this smell - trust me, you don't want to.
He had more than a few lows. Too out of it to get his glucose tabs.
He would sit up at night because his back hurt. Of course - in a camper - every move he rocked the boat!!!
He popped nitroglycerin tablets like they were candy. He had such problems with any type of altitude. At one point I said that we were lower than where we live and he said we had been lower and he couldn't adjust to getting back to his normal altitude.
So - here's my take on all of this.
His BUN is going up. That means that his heart is not pumping enough blood through his kidneys in order for his kidneys to cleanse the blood. Sort of a catch 22 situation.
He has developed a nasty cough. Congestive Heart Failure. Because his heart is not pumping enough blood and it is backing up in his lungs causing fluid.
I am watching for all of the tell tale signs of a heart attack - I think he is setting himself up for one.
We have been home for 36 hours and he is still unable to adjust to the altitude - which isn't much!
On this trip, he could not see. He could not help me with traffic. So much of the time he said all he could see were blobs. A forest looked like blobs of green.
He is losing his hearing. He got angry at everything (dementia?) and I had to repeat over and over what we were doing, what our schedule was, what was next.
I think that's what bothers me the most. We are planning a long trip this fall and he had told me he had made reservations at this one place I really wanted to stay. A few days later, I asked him to verify our check in date and he said he didn't make the reservations there. I told him the he did. He kept telling me that he didn't. I finally got ahold of the place, and yes, we had reservations. They emailed me the confirmation. When I showed it to him, he just said, "ok". Like he forgot the entire conversation we had about it. Well if that doesn't drive you mad, I'm not sure what will!
This is NOT my disease. It's NOT your disease! YOUR life is NOT ending and there is no reason for any of us to live like it is. Get out there and do the things you love to do. Ok, maybe we can't go dancing with our spouse....but there is still tons that can be done.
The thing I have had to learn is that he is going to die whether I am here or not. He will go into a coma, pass out, have a seizure - whether I am here or not. Should I just sit here and wait for it to happen? Why?
And when it does happen (and it will) I will have my moments of doubt - I will regret that I was not here beside him. But I hope I'm smart enough to remind myself that this never has been and never will be my disease. He has chosen to be non-compliant. That was not my choice. I know the consequences of his decision. He has a very solid DNR that his physicians have all signed off on so there is no question about the path that needs to be taken.
So, to "Managing" - get out there! It won't be with your spouse, but you won't be sitting at home waiting for death to knock on your door. I can't fathom anything more depressing than that! If nothing else, dig a hole in the ground and plant a flower. Or buy a pot and put one in it. Then add another....and another....and soon, you'll find that when you go camping for 3 weeks you have way too much gardening to tend to when you get home! Guess who that happened to? LOL!
Here's hoping you all had a marvelous July 4th!
DW
