I realize I probably share way too much about what’s happening with my Dad and his Parkinson’s. After staying up with him all night New Years’ Eve, then having to fill in for the in home care service person who called in ‘sick’, I’m a little tired, slap happy, frustrated, and dare I say angry? So today’s entry is about me – the backup.
When Dad started going downhill, I knew we had to find help for Mom, but what do you do when you have a Mom who has all the faith in the world, but trust in very few, a Dad who no longer has a filter and let’s his feelings be known if he doesn’t want you around, and you’re stepping into waters you’ve never be in before? You panic a little, then you try to pull it together because you realize that they won’t do it on their own. You text your brother who lives down South, and together you work through plans to ease the stress.
I think I’m at a point where I could actually help someone who is entering my current situation. All the mindless viewing of websites that are all set up pretty and enticing to draw you to using their services is often smoke and mirrors. Don’t get me wrong, eventually you’ll find the right mix, but be prepared for a few swings and misses.
The first group I contacted came at the recommendation of a family friend who is currently sitting with Dad three days a week. We conference called, got some information, but I walked away questioning if this was truly what we needed. I think the first thought in my head was that we needed skilled nursing who could do everything the wonderful nurses of this world do. I’ll take a break here to say how proud I am of the girls my sons’ graduated with who are now embarking on a lifetime of caregiving. It’s a calling for sure. Anyway, I got to a point where I think I was trying to avoid making any more decisions about Dad’s care and help for Mom. I guess you could say I was being selfish, but I think I was more scared. I’m one that needs a map of some sort, and going into uncharted territory blind is not my forte. But I jumped with both feet.
Caregivers through agencies, like I said, can be a real crap shoot. The first two we thought were okay, but about a month in, they were splitting shifts, making Dad feel like he was being manhandled, and what was supposed to be comforting was anything but. They got rid of those two and brought in an eighteen year old girl and another young girl. The eighteen year old had Mom defensive because what experience could she have? She’s been the rock star. Very caring of Dad and Mom, and understanding of the quirks and sometimes angry moments that accompany a Parkinson’s patient. The other young girl, well, she’s been inconsistent at best. Difficult one night, a dream the next, then calls in the next two nights. I have a full time job. When a caregiver can’t make it, it falls on me. Last night was a great example of how taxing it is. As a result, I’m taking the day off work today to sleep, go meet the new caregiver, and meet with Hospice, which I’ll cover here in a bit.
Caregivers are an interesting breed. To work odd hours for people who can do anything from be sweet to flat out telling you to get out of their house is well beyond my limits. I can’t keep my cool that easily. Sometimes I think they struggle with it, especially after eleven hours of following my Dad around the house all night and trying to keep him from waking my Mom.
When you’re a spouse AND caregiver, that’s a whole other level of ’til death do us part’. I’m on multiple social media sites for Parkinson’s caregivers, and I’m amazed at how many people are ready to throw in the towel. Some get so angry and frustrated because communication with an aging person in the final stages of Parkinson’s is like learning a foreign language that is being made up on the fly and changes minute to minute. It requires adapting in ways you’re not always comfortable with. Take my Mom – she’s struggling with adapting. Dad fell the other day and cut his hand pretty seriously. We talked about going to the ER to get the bump on his head looked at, and all Mom could worry about was getting nicer clothes on and giving her a chance to change clothes and put on some makeup. For those who know me, you can imagine to the ‘you’ve got to be kidding me’ comments that came out of my mouth. She’s from a different time.
You have to adapt. It’s that simple. If the person doesn’t hear you, you have to speak louder. If they mumble, you have to try harder to listen and pick up on key words or phrases. If you walk by them, you have to make sure they aren’t trying to get your attention because walking by without acknowledging their requests comes across like a frustrating slap in the face. You have to expect the unexpected. You have to understand their brains aren’t functioning like they did a year ago. Hell, it’s not functioning like it did yesterday.
On to hospice. A friend lent me a book called Final Gifts. I’d do all the reference stuff like a good writer, but I don’ t have it handy and I don’t think I’ll be sued for any copyright infringement accusations. Anyway, the book is by hospice people who spent time understanding the signs that someone is on their way out. The entire book is full of stories that got my mind racing and unfortunately, probably lead me to some inaccurate conclusions. However, some of my findings were confirmed after a trip to the pulmonologist the other day, confirming it was time to call in hospice.
Hospice is one of those things where you hear the word and you think death. Let’s face it, they’re closely related. My Aunt passed away a few years back and a hospice nurse was there. She’d check her vitals, and at one point kept going back and forth between wrists. She turned to the family and simply said that it wouldn’t be long now, and she was right. Within twenty minutes, my Aunt took her last breath with all of us there. To see that every day can be depressing, but I’ve got to think after a while, it’s almost spiritual and rewarding.
Today hospice comes out to meet with us, evaluate Dad, and come up with a course of action. Might be a couple of days a week, maybe more. But its hitting home that we’re finally there. We’re realizing that we may have a few hours, we may have a couple of years, we don’t know. But I know the hospice people will.
So back to the original concept of this entry – me, the backup caregiver. I’m tired. The lack of sleep last night is catching up to me. The fact that my Mom was up putting Christmas away at 5am was killing me after being up most of the evening. But I think it keeps her occupied instead of laying there watching over Dad wondering how much longer she has him. I get that. But for me, it’s anger and frustration. Frustration because so much is completely different now. My once proud and self reliant Dad can’t make it back to the bathroom without help for fear of falling and needing help to use the facilities. I’m angry at myself for not having more patience. I’m angry at myself for yelling at both of them last night, telling them I couldn’t keep being an intermediary. Mom has to adapt because Dad can’t, and I wasted a lot of energy trying to explain that last night. I still don’t think it made a difference, which is all the more frustrating. I feel guilty when I leave them. I stress about being at work and not being two minutes away. I panic when the phone rings and I see their names on the caller ID. I hate waiting for that mid day text from the agency letting me know if we have help or not. I hate trying to find another agency. Bottom line, I hate old age and I really hate Parkinson’s disease.
So there you have it, the musings of an angry (once) young man. I blame no one. Anything I do is based on a sense of loyalty and love. I have to work on my patience as I realize we’re in the final stages of life. Things will get worse before they get better. I ask in advance for your patience and understanding if our paths cross – it’s nothing personal. I know I’m not dealing with anything others aren’t or have had worse, but this is mine. I hope in some way, I was able to provide a road map like I wish I had.
Random Thoughts of an Ordinary Average Guy 