|Bill waiting for trash pickup last Friday, his big event of the day. Bill now brings the trash cans back, a job he used to have before his accident, thus bringing his life somewhat back to normal.|
Here at Casa Tipton-Kelly we're pretty well settling into the new normal.
No more staying up all hours of the night. I used to go to bed around 12:30 to 1:00 AM. Two nights ago I went to bed at 8:30 PM and slept through the whole night. I do get up early, usually around 5:30 AM.
First job in the morning is to change Bill's dressing on his right leg. He has edema on both legs. That means his heart isn't pumping enough blood to his lower extremities. His right leg began weeping (seeping clear liquid) shortly after he returned home last month from rehab. His hospice nurse recommended dressing his leg wound. She also prescribed an antibiotic. Both measures seem to have stemmed any worsening of Bill's edema. The wound is still there but not as bad.
Every third day I have to help Bill get a shower. Actually I have to undress him, lead him to the shower, soap him down, all the while he complaining, and dry him off, then dress him, again while he is complaining, and then help him upstairs to give him is daily morning medications and prepare is breakfast of oatmeal.
That is just the beginning of my day. The other day we had a dust up. The usual, he made a suggestion to try to "help me", but actually would cause me a lot more problems than "help" me. The very first time we had a big fight in our fifty-six year old relationship was over him trying to "help me." I do all the cooking and cleaning up in this household. Bill insisted that he wash the dishes. I told him I prefer to wash the pots and pans and dishes before we sit down to eat (this was way back when we did eat together). He wouldn't hear of it, he insisted that I leave the dirty pots and pans in the sink and sit down to eat and he would clean them later. I didn't see how this would "help" me. I come from a background where my Mother always left dirty dishes in the sink, resulting in gray, cold greasy dishwater. I vowed when I had my own household that I would never leave a dirty dish in the sink and especially not dirty dishwater. Well, we had furious fight over who was going to wash the pots and pans and I won. Over the years we have subsequently had many fights (arguments) over the same thing, which is really about control.
This time Bill wanted to remove the bed from his bedroom and replace it with a table so I could put all his wound dressings on that table. I told him I already had a system and I didn't need to remove the bed (which he doesn't use anyway). He wanted to take the table, which I was using, and put it in his bedroom. Again, this really wasn't about helping me but Bill taking control. You should see us driving. For several years now I do all the driving. But Bill still can't help himself, he is the ultimate back seat driver. More than once I've told him "Bill, either you drive this car or I do but we can't both do it at the same time. We're going to have an accident."
The condition Bill is in now, very weak, he is in no position to call the shots. The best way he can "help" me is to let me do my daily chores without his interference. I understand he wants to help but what he is really doing is again trying to take control. So when he didn't get his way he threw a fit and went to his bedroom, refusing to speak to me. I took my brother's advice (he was our Mom's caregiver) and establish who is in control. He said "You can't let them run the show because it's going to bring you down and ultimately them down" or words to that effect.
After Bill cooled down we had a conversation and now Bill understands the best way for him to "help" me is to cooperate with me. I know what I'm doing. He wouldn't get the care he's getting from me from anyone else.
Once a week his hospice care nurse visits to check on him. Of course Bill gripes and complains because someone is coming into out house. This has always been a source of contention between us. I have to patiently explain to Bill that she (Caitlin) is here to help him and me. His alternative is to spend the rest of his life in a nursing home. Would he prefer that? Of course he doesn't. Sometimes one has to get one's attention. I have his attention now, for awhile anyway.
Today we take our daily ride, something he would never get in a nursing home. I will make his lunch for him as I make his breakfast. I will help him dress and undress. And every third day I will help him shower, and he will complain. My once solace is that I am glad he's here at home and in his way he does appreciate what I'm doing. I am thankful he knows who I am, although he is often confused as to what day it is. I think I have him talked into spending a week at the hospice daycare center sometime in the next ninety days so I can take a respite leave. He was adamant against leaving our home for any reason. Now I think he sees it would help both of us if I got a reprieve for at least a week. It's not going to kill him to spend at week at the home like setting of the hospice day care center. And I am wearing down folks, but managing.
For those of you who have never been caregivers, this is what you have to look forward to. Of course every situation is different but all of them have one thing in common. It is very time consuming because you're taking care of TWO people, not just yourself. And you're taking care of someone who can't dress themselves and requires multiple medications, keeping track of which is not easy. I know one thing, if I ever end up in a situation that I need a caregiver (and I pray I don't), I will be a lot more cooperative. It's not all peaches and roses folks, it's life.
Have a great day everyone!