Eat it, Just Eat it!!

Most of us eat what we want without much thought about what the food is doing to us. When we were younger, we could eat whatever we wanted without much consequence. But now that we are older, there are more things to consider.

God's original design for food consumption was primarily to be fuel, but I believe He also gave things good flavor so that we would enjoy eating too. Of course, we have gotten where over-indulgence is the standard instead of the exception, and that often wreaks havoc with our bodies. As we get older there are certain things to consider, and if you have a neurological disease, there is even more to take into account.

This is not the time to be lazy about your diet. In Parkinson's for example, the lack of dopamine in your system does not allow your body to process foods like it used to. Not only is constipation a common ailment, but if you are eating the wrong things, you might find you have frequent diarrhea and more bowel movements in a day. You might not care about that, but for a care partner who spends time cleaning you up, that might be a concern!

The best advice I can give is "BALANCE". If you feel you have to eat those chips, then at least have a good helping of vegetables along with them. Any greasy foods like potato chips, processed foods, fried foods, rich meats, and dips, will cause your stools to slide right through you. So, compensate by eating more bulk; legumes, bananas, berries, almonds, sweet potatoes, apples, quinoa, broccoli. You can get an extensive list from our doctor or from the internet...easy peasy.

If your loved one is a picky eater, find a couple of bulk items on the list and figure out new ways to fix them. It might be a challenge to find a good balance for some but keep trying. Make it a game. Try to find a new way to fix an old meal and see how well your loved one takes to it. The internet has amazing recipes for just about anything. If you have access to Alexa or Ciri, ask them to find a recipe that uses the ingredient you want. Our world of technology is a great assistance.

Finding healthy balance for your loved one's diet can make a huge difference in the way your loved one's body processes. And in turn. it might free up a little time in the care partner's schedule, too. And that's a win all around!

DEMENTIA; The Gift That Keeps On Giving

Several months ago, around Christmas, I discovered some discrepancies in our checking account. Now, I do all the finances (Since PD took over) so I couldn't figure out what was going on. Well, turns out PDD (Parkinson's Disease Dementia) was going on! It is always finding new ways to show itself, and this time it really did a number on us. It's actually taken me this long (6 months) to get it all straightened out and be able to share it with you all. 

I began to see extra charges in our checking account--charges I hadn't made. When I asked Jamey about them, he said he hadn't made them either. I spent hours on the phone with the bank, with subscription companies, etc. Well, it turns out, he HAD made the charges. He just didn't know he'd done it. (There's that self-unawareness again). 

When all was said and done, he had opened up multiple subscription accounts and changed most all our passwords. He had 3 subscriptions to Paramount TV, 2 to Apple TV, several Pay Pal accounts and many more. When he couldn't get into an account because he'd forgotten a password, he'd simply open a new one. He just pushes buttons when he can't get what he wants and pushing buttons creates charges as well. The added subscriptions amounted to almost $800 a month for several months, until I was able to reach all of the companies (and that is a challenge in itself these days).

Here are the steps I had to take. Maybe this will help other caregivers in dealing with a similar issue.

1. Identify the problem account(s). 

2. See if you can take care of it online (I found I had to call most and talk to a real person). Unfortunately, in this day and age, it's very difficult to reach anyone. I spent many hours on hold, just waiting for an actual person to help me.

3. Explain the dementia and see if they will consider wiping out the last month along with future months. (In the case of purchasing movies, they will not refund monies if the movie has already been viewed, even partially).

4. Put blocks on everything. Many companies will send a pin code to the designated "parent" so you can choose to give your loved the pin or hold it back. That way you always know what is going on in your account. The unfortunate thing about subscriptions to TV programming, is you cannot prevent someone from opening another account. If your loved one has good credit, they can go and open another account and you might never know. Streaming services don't care how many accounts you have open--it's money in their pocket.

5. I check the bank statement frequently. Any change? Get to the bottom of it quickly.

6. Because I am not savvy in technology, I had a trustworthy young man from church help me out. He was able to close most of the accounts for me. The biggest problem was figuring out the passwords.

We got everything in pretty good shape but then I noticed still another charge each month. Turns out Jamey had another Pay Pal account that he didn't remember, and they were taking money out each month for something he wasn't even using. That had been going on far longer than 2 months.

I'm still finding new purchases some months, but I've been able to catch them quickly. Most companies will not allow you to block an account from an account holder, so you have to close out that specific account or subscription, completely, and reopen a new one in your own name. Don't even include your loved one as a joint name. This won't solve the issue of opening new accounts, but you'll at least have a handle on current finances.

I would encourage you to talk to your loved one before you encounter anything. You can set up child blocks, even before signs of dementia. It only adds a short step to the buying process, and you'll never be "surprised". If you're in charge of the finances, make sure you're checking every month. Part of our problem was that I didn't check in with the bank as often as I should have. I paid for that, in more ways than one.

Since the computer is one of my husband's only sources of entertainment, I'm not ready to take that from him yet. But I keep a very close eye on what he's doing and what he's watching, now.

We lost quite a bit of money from this little dementia episode, but it was a valuable lesson. Never assume anything, keep a good eye on your finances, and always know what your loved one is doing. I must admit, it's difficult to be aware, without nagging or hovering, but it's important to protect yourselves from the beast that is dementia!

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! 

PD Dementia

My apologies I've been so long in posting. Life gets in the way of my fun! :)

Even after 20+ years, trying to navigate this disease is still a challenge, but we continue to learn every day. Although Jamey is only 64, he's in the final stages of PD. He is now showing significant signs of dementia. However, if he has to have dementia, Parkinson's dementia is the one to have. PD Dementia is different from other dementias like Alzheimer's, or Lewy Body.

Parkinson's Disease Dementia (PDD) is difficult to define, and like the disease, it can be extreme one day and almost undetectable the next. "The changes can be so drastic that sometimes we hear that others are concerned whether the individual is "faking" their symptoms because they can seem so much better in between these episodes." (The Parkinson's Path: Fuhgeddaboudit - Parkinson's Disease Dementia, Winter 2023, www.panctoday.org). 

Jamey exhibits confusion and inability when trying to do simple tasks he's done for ages. But other days, there seems to be nothing wrong. It's difficult for a caregiver to recognize when he is going to be "on" or "off". When this first started, I dared not leave him by himself for fear of him doing something unfixable. (Months ago, he opened a lot of subscriptions that began taking money out of our account automatically. It took me several months to clean up all the accounts and put in pin codes and blocks; actually, I'm still working on it). At that point both of us felt like prisoners. I didn't go out, even to my exercise class, for fear something would happen, But, since then, I've learned how to spot the signs that he's going to have a dementia day. He begins the day in lethargy; watches a lot of TV, sits around, even takes a nap or two. When I see this, I know he is going to be "off". These are the days I won't leave him alone. These are the days he will be confused and at times, not even know how to work the remote control on the TV. Even a simple bowel movement can be an issue, a surprise clean-up problem.

Here is an excerpt from the paper I quoted above. It was written by his doctor, and I found it very helpful. I hope you do as well. Mind you, it hasn't quelled my inquiries of "Really?! You can't do that? You did it just fine yesterday!"

"So just what is Parkinson's Disease Dementia? I have heard that it is related to Lewy Body Dementia. Is this correct?

The answer can be a bit confusing. In fact, you may still find that some clinicians use the terms LBD, PDD, and DLB interchangeably. However, the correct terms are:
Lew Body Dementia (LBD) is an umbrella term that refers to two types of dementias that start with different symptoms but are very similar:

--Parkinson's Disease Dementia (PDD) starts with motor symptoms and dementia develops later. Most individuals with PD have cognitive impairment by 15 years of disease duration, either mild cognitive impairment (MCI -36%) or PDD (48%).

--Dementia with Lewy Bodies (DLB) starts with cognitive symptoms, Parkinsonian symptoms develop on an average 2 years after onset of dementia, are often milder and respond less well to medications. Note: Robin Williams had Lewy Body Dementia. His wife is still a strong advocate for LBD awareness.

The typical cognitive pattern of PDD is problems with attention, executive functions and visuospatial ability. These are the main issues early on; more significant memory impairment occurs later. There are also two distinct cognitive features commonly seen in PDD but not in AD (Alzheimer's Disease).

1. Cognitive Fluctuations: Often described as having good and bad days cognitively. Person may appear confused, staring off into space and be difficult to get their attention. These are profound changes in attention and alertness that can last hours and then resolve on their own. Fluctuations in cognition are common in PDD, but not in AD.

2. Visuospatial Dysfunction: not a problem with the eyes, but rather the visual part of the brain that makes sense of the information collected by the eyes. May have seen an eye doctor and been told that the eyes are working well but still having problems with reading, judging distances and reaching for objects (might drop things often). 

3. Although not 'cognitive' symptoms per se, recurrent visual hallucinations and a history of REM sleep disorder are also much more common in PDD compared to AD.
Medications should be reviewed to identify those that could worsen symptoms or are best avoided in older adults with dementia.

This article goes on to give other ideas on coping with PDD. Worth reading if you suspect your loved-one has PDD, LBD, or AD.

It's not fun dealing with all of this. However, of all the dementias to have, this one is far easier to deal with, I think. At least I get a day or two of respite in between episodes; enough to give me back my sea legs and gear me up for the next round of dementia to come!

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The Parkinson's Path: Fuhgeddaboudit - Parkinson's Disease Dementia, Winter 2023, www.panctoday.org.