The Nitty Gritty

When I first started writing this blog it was intended to be, not only therapeutic for me, but also a help to other caregivers in similar situations. Not knowing what the future held, I hadn't envisioned the possible embarrassment of my husband in disclosing intimate issues to others. However, what benefit do we get from our trials, if not to make someone else's life a little easier by sharing what we've leaned along the way?

"Blessed be the...God of all comfort, who comforts us in all our affliction, that we may be able to comfort those who are in any affliction, through the comfort with which we ourselves are comforted by God."     II Corinthians 1:3

So, in an effort to comfort or shed light on Parkinson's Disease Dementia (PDD), we're bearing all, so to speak. I don't share these things to freak you out or make you fearful (and certainly not to embarrass my husband), but to prepare you in the event you have to walk a similar road. I wish I had been told some of these things ahead of time, myself.

Because Parkinson's Disease and Parkinson's Dementia is different for every person, you may or may not experience some of these issues (and I pray you don't). But this is what we're dealing with, 26 years into the disease.

As you know, if your loved one has a form of PD, Dopamine controls EVERY function of the body. If you're not getting enough Dopamine in your brain, all body functions go haywire. From bowels to temperature regulation, to movement, speech and cognition. It's all affected.

For me, the most concerning issue, because it's frustrating, is "self-unawareness". Weird term, but that's what the neurologist calls it. Jamey can be doing something and be completely unaware he's doing it, or the reverse; thinking he's doing it and he's really not. This is especially disconcerting in the bowel department. He is often unaware that he's having a bowel movement (BM) when he actually is. That's not horrible since he wears pull ups, however, sometimes he'll pull off the undergarments while in the middle of the BM, and that's when things get messy. Literally. When he's having self-unawareness, it can last for days at a time. Because he doesn't eat things he should (I have finally given up nagging--you have to pick your battles), stools are often runny or hard. That can also be a byproduct of PD, but it helps if you eat properly. He also eats all day long because he moves and has to refuel. So that creates the need to 'go' more often--as much as 3 or 4 times a day! There have been days when I've cleaned up him and the floor, turned around and had to do it all over again just a few minutes later. This can really wear out the caregiver. On days like that I feel I'm in a constant state of clean-up. 

While self-unawareness is frustrating (for us both), apathy is the thing that makes me feel like 'the maid.' I know it's not his fault. It's all part of this wonderful little thing called dementia, but he often has no conscious understanding that I am having to do a very difficult job all day long, and I get tired. I'm the kind of person who needs affirmation so when I get none, it creates a sadness in me, that sometimes carries over into my caregiving. 

The cognitive lapses can be frustrating as well, not only for the caregiver, but for the loved one too. For the most part, in PDD, the loved one is completely aware of what's going on. That's got to be difficult. My husband was always great at technology and never really needed to think about it. It always came naturally to him. Now, some days he cannot even work the remote control for the TV. For someone who's never had to think twice about how computers or phones work, it must be more than frustrating to not understand it any longer. That can be aggravating for the caregiver as well. Having to do research to find out how to do things they used to have the loved one do.

There are so many other strange things going on in the bodies or our loved ones with PDD, and I will surely cover some of those in other posts. But these were the ones fresh on my mind, having just come off of a couple of "cleaning" days. 

So, with that said, I do have some suggestions for you diligent caregivers. These are things that have gotten me through, at least partially. 

1. First and foremost, take the focus off of you and what you have to do. It can get overwhelming to think about cleaning up poo after having done it several times already. But, if you focus on JUST the task at hand, it will be much more manageable...maybe not enjoyable, but manageable.

2. Try and put yourself in your loved-one's shoes. It's not fun for them either--to be cleaned up by someone else. If they're lucid at the moment, that's got to be embarrassing and maybe even humiliating for them.

3. If you pray, do so. Your faith can help tremendously. Or count to ten, leave the room for a few minutes, or take some deep breaths. Give yourself time to process and start over. Just realigning your thoughts can help.

4. Find a distraction. I'm not very good at this, but Jamey's caregiver is amazing at finding something funny in everything. She keeps us laughing all the time. Actually, she keeps herself pretty happy too. :)

5. Remind yourself that this won't last forever. Even when it seems like forever, it really isn't. At some point you might even miss caring for your loved one. After all, the alternative is far worse. Try and be in the moment and find something good in it. Trust me, there will always be something good!

There is no perfect answer to getting through difficult times on this journey. But if you try and remember you're in this together, it might be easier. Even when I'm feeling less loved because of apathy and exhaustion, I can remember this is just a small moment in time and things will change. Let's face it, Parkinson's is always changing! It never stays the same. 

I guess that's a good thing in the long run.

NOTE: You might remember an earlier posting, ("Strange Med-fellows", March 2022) where I attributed self-unawareness to a medication issue. That was true, then, and that's been taken care of. But dementia is the current culprit and that's one we can't just reduce in dosage!