Parkinson's truly is an insidious disease. It is confusing and aggravating and just when you think you've made some progress, Parkinson's shows you who is in control.
I was so glad that dad's meds were adjusted last Friday. I've been anticipating a change in him, convinced that the blood pressure meds were the problem. Then on Thursday morning, just as I had shown up for work, I received a call from a nurse at dad's assisted living community. Someone in the dining room had called for help with him. He was dizzy and pale. After some assessment, which resulted in more low BP readings and a very slow pulse, the staff wanted to call 911, but dad refused.
So, here I was at work. At a job where I can't just up and leave at a moment's notice without some significant hassle for everyone else. And it felt as though the world started moving in slow motion. I had become THAT person. The person I study. The person I read about. The person that can't hold a job because they are taking care of a loved one. The person whose life has to stop and change gears at the drop of a hat when something like this occurs. And in this short period of time, I wondered how I was going to pay my bills if I couldn't hold a job. I wondered what I was going to do if dad was admitted to the hospital. I was supposed to be starting a week long vacation the next day to devote time to my kids and my master's thesis. Was everything going to change? My head was spinning with all this, but partly because I didn't want to focus on what was happening with dad. It all felt like too much.
Thankfully...so very, very thankfully, we switched care to the doctor we saw last week. An old-school doctor who still makes house calls. I asked the staff if they thought he would come over for dad instead of calling 911. The nurse told me that he was already on his way over for someone else, so she would just add dad to his rounds. I can't explain how relieved I was that we just started in his care. Thank goodness for people like him. Doctors who still take time with their patients. His trip out to see dad saved dad the fear and confusion of an ambulance ride and it allowed me to stay at work and receive updates by phone for a couple of hours.
The result was that more of dad's BP meds were adjusted. He may just go off of them all together, but for now, we'll keep reducing them. I called and spoke to dad later in the day and he was still confused about everything, but at least he was feeling better.
I drove out on Friday and sat with him for a while. He was still confused. He still couldn't come up with words. And he was still unsure about what happened the day before, but he absolutely remembered that he did NOT want to go to the hospital. We spent some time together and then I got up to head out for a busy day of errand running. As I was getting to go, I told dad what I always tell him, "Call me if you need anything" and without even looking up at me, he said, "Well, it didn't do any good yesterday".
Wait? What?
Ouch.
I then went on to explain to him that I was in constant contact with the nurse and that I had been at work and that if the nurse had told me he wasn't getting better and/or that he was going to the hospital, I would have come. He said he knew that. But, wow, it definitely stung to hear him talk as if I had let him down.
And it still stings. And I've been thinking about it a lot. My reality is that I am the one who is in contact with my dad's assisted living community. They all know me there. I keep dad's grocery list and make sure that he always has the things he wants in his room...grape nuts, milk, honey, chocolate, chips, dip, ice cream, gum, etc. I do all his laundry. I pay his bills. I talk with his insurance company. I take him to doctor's appointments. I fix as many of his problems as I can...like getting him a new, more user-friendly cell phone. I bought him a robe that he can sit in in the mornings instead of getting fully dressed when he wants to get out of bed and rest in his chair. I sit and research the latest and greatest PD information always looking for another option for him. A large portion of my life is devoted to my dad. But I also have a husband and children and three jobs and a master's degree to finish.
And I know that my dad is confused and maybe he's so used to having me around when he needs me that he didn't understand why I didn't come on Thursday. But...I got my feelings hurt. And they're still hurting a bit. But that's on me. I know that no one can make us have feelings. They come from a place within us. And I know this is part of being a caregiver for someone with a neurodegenerative disease. I understand the reality. It just isn't always easy.
And after I visited dad today, I still feel like something is off. He's forgetting to go to the dining room for meals. He's still hard to talk to. I spent a good portion of time talking to the nursing staff. And I wonder what is happening. Is the Parkinson's declining? Is it med related? This damn disease is complicated. It's a constant struggle to figure out what is going on and what needs to be done. So, next week will be another call to his neurologist. Probably another appointment.
Please understand, I'm not complaining. I'm just sharing. It's important for me to get this stuff out for me to release some of the stress. As I've progressed through my master's thesis, I have had some PD caregivers make contact with me. I can't explain how much that has meant to me. No one understands PD caregiving like another PD caregiver.
This blog is my place to be honest. And in all honesty, it's hard to watch someone you love struggle like this. It's hard to wonder if each day will be a good one or one that isn't so good. It's hard to wake up in the middle of the night wondering if dad is okay. And it's hard for dad. He's living in this body that is betraying him. I just want to make his life easier. And this week I feel as though I let him down. It seems I'm always letting someone down. And it's not a fun place to be. I am only one person and I'm doing the absolute best I can. It's just frustrating when one's best isn't good enough.
But my feelings will heal. My dad's PD will not. And so we all just keep plugging on day by day. It's all any of us can do.
One day at a time...
No comments:
Post a Comment