Yesterday was a bad day. Emotionally bad for me is the best way to put it. I made myself take a good, long, hard look at myself. And I guess what I am going to say is that I am not happy with what I came up with. My whole role in this care-giving journey is to provide my husband with good care. I am supposed to make sure that he is comfortable, happy, and well taken care of. I am a take charge person. I am a 'control freak'. I am the fixer. And that is a bad illusion to have. Because I am not going to be able to fix him. Just ain't going to happen.
And that sucks!
Yesterday was a normal day. We got up and I got him out of the bed and into his wheelchair. We went into the dining room and I set him up to brush his teeth and then eat his breakfast. He did some of his normal complaining about his catheter and I did my normal reassuring him that all was well. But it didn't seem that all WAS well. So I laid him down in his bed and did some fiddling with the catheter and had a gush of urine into the bag. So, something was wrong with the catheter. Now all was well again and we went about our normal daily activities.
Towards late afternoon he was once again complaining about the catheter. This is not really unusual, but I have learned to always check, because sometimes something really IS wrong. So, when I went to check I found that he was wet. The catheter was no longer in place. It was out!! And when a person has urinary retention that is not a good thing. He was already telling me he had to gooooooooooo!!! So I got him up to his bedside commode and texted the Hospice nurse. Took awhile for her to send me back a message that she was not at work but that she would call the office and talk to the person in charge. And we waited. And Waited. And finally, I texted the person in charge. And waited and waited. After what seemed like an eternity to me (and probably even longer to Richard,who was the one with the bladder filling up) I got a call from the nurse in charge. She had been on jury duty and had not been getting any of the texts being sent to her. And she was less than polite to me! And I am not the kind of person that takes well to that. Remember, I am the take charge person. I am the FIXER! And this is my husband. And I was anxious and needing someone to put in a catheter. And all of those things made me not a very nice person either......
To make a long story shorter, finally, an on call nurse arrived at our home, placed a new catheter, drained a pretty full bladder and left me with a happier more comfortable patient. But I wasn't a happier caregiver. I hate being out of control. I hate not being able to fix the problem. I hate having to wait for other people to help me.
But what I started out to tell you is that I have to quit. I have to stop trying to fix everything. Yes, there is a pill for this and a pill for that! Is he having bladder spasms. Is the twitching because of a drug interaction or an infection. Why is he not eating. Should I try to fix something else. He sleeps too much or he doesn't sleep at all. STOP!
I HAVE TO STOP!
That doesn't mean that I stop taking care of him. That doesn't mean that I quit caring. But I have to stop trying to fix him. Cause what he has can't be fixed. It is the normal progression of the disease. That along with his age means that eventually he will die. And there isn't a damn thing I can do about it. I can love him and care for him until the very last breath but I can't make him better!
And that, for me, is a bitter pill to swallow.
Sometimes being "nice" gets you nothing - sadly! And as a caregiver you can't risk nothing. In 2011 I am quite sure that my name was on a watch list at our local hospital - when mom and I had "extended visits" more times than I can count. I was not nice and I know that they thought I was a crazy demanding daughter. No matter!!! I got what I thought mom needed.ReplyDelete
One time after mom went into Assisted Living I was telling a social worker about that year of not being "nice." You know what she said? Your mother is doing as well as she is because of you! She got what she needed because of you! YOU made things happen.
So your dear husband has only you! And getting things done - having expectations on his behalf - being his armor and his voice when he can not be either of these things is what YOU need to do - nice or not!
Be kind to yourself. You can't fix him - true - but you can make his time as comfortable as possible and make people "hop to" to get that comfort!
You are amazing even when you don't feel you are.
Gosh I wish we were closer geographically.
You couldn't be more right. And I know that. But still everytime I drive myself crazy trying to 'fix' him I come out of that round more exhausted than ever. So I have to stop!Delete
How frustrating when someone you love needs care and it is not immediately available. We love this person and we want everything done as soon as it needs to be done. Poor Richard with his bladder full like that for so long and poor you for having to deal with this frustration. God bless you both and give you the strength and peace you need during this difficult time.ReplyDelete
Frustrating is a good word. Maybe I should have chosen that as my word for the year. But I am trying my best to stay positive! It isn't easy that is for sure. I hate not being in control. And I have no control over his illness or his Hospice nurses :)Delete
Totally different situation, but I experience the same incredible frustration when my husband, who has major depression, has a bad day. He takes medication, which, for the most part, helps him. But some days, he is depressed and angry and I think I make him angrier because I am trying so hard to figure out what's wrong and fix it for him. He has kindly told me that me trying to fix him makes it worse. But I still can't stop feeling like I have to. I can't even imagine what it must be like to be a nurse AND a caregiver. The control freak nurse in me would probably feel just like you do.ReplyDelete
Thank you so much for this Lisa. I know exactly what you mean. Why can't we just fix the problem and move on??? Richard gets upset with me when I get upset. And I tend to take all my being upset out on other people....right now it is Hospice who is pissing me off. It is nice to know that someone understands and doesn't find me to be the problem!Delete
It sucks not being able to sit and watch helplessly while your loved one is uncomfortable because of circumstances. If the head person knew they were in jury duty, she should have left a second in command to deal with situations exactly like that. Someone dropped the ball in the hospice office that day. One of my extremely good friends is a hospice nurse. I wish we lived closer because she would be excellent with Richard and you. She treats her patients and their families as her own family. HugsReplyDelete
According to them, I am the one at fault. I should have called the office instead of texting their phones. I am just not real happy about anything right now and I am taking it out on Hospice. Oh well, better than taking it out on Richard and the kids. Right?Delete