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!

______________________________________________________________________

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

Bugging Out with your Loved One

Do you sometimes wonder how you would evacuate or flee with your special-needs loved one in an emergency? For instance, how will you move your loved one in a wheelchair or scooter, toting an oxygen tank, hospital bed, commode, or other medical devices, quickly?  That can be a daunting question, and even more daunting to actually do it.

With climate change and concerns of the unexpected, comes a fear of preparedness. Every state has natural disaster threats where evacuation may be eminent.  Flooding, fire, hurricane, earthquakes and tornados are far more prevalent these days. So, what will you do if you have to get your loved one out quickly?

One of your first steps should be to evaluate the absolute necessities you will need to travel with you. Medications, chargers for power chairs, oxygen and the like, should be at the top of the list. Adult diapers, pullups, bedding, pillows, hospital bed, commode are also important depending on where you end up.

To make bugging out (evacuation) easier, clear a space in your closet and keep everything there that needs to go with you in a hurry, For instance, keep all of your overflow medications, chargers, oxygen, etc., in that area. For items you use regularly and cannot store, always put them back in the same place so you won't be scrambling to find them at the last minute. You may even want to keep a packed suitcase in the same closet if that will make you feel better. If you've made a Care Binder (October 20, 2014, "Respite Workers", this Blog), put a page in the Bugging Out section that tells exactly where everything you need to bring will be located. Mark it in red if necessary so a caregiver other than you will be able to locate the information quickly.

Here is a list to help you start preparing. Each individual's needs are different, so tweak the list to accommodate you and your loved one.

1. Identify what natural disasters occur most often in your area. Determine whether you will know ahead of time about an evacuation and plan accordingly.

2. Choose a friend or relative you can stay with if something should happen and talk to them ahead of time. If that's not possible, ask your township where the emergency locations are to house evacuees.

3. Know the set up for the home or hostel where you will be going; does it have stairs, is there a hospital bed available, what is the shower/toilet situation? Is there room for a power or wheelchair to move around easily? What are the accommodations for disabilities?

4. What are the transportation options to get you out safely and timely?

5. Do you know the emergency procedure for where you live, where to go, what route to take? If you live in a senior community, are you familiar with their emergency plan?

6. Do you know where the shut-off valves are to your home or apartment. Do you know what tools are needed and do you have them on hand?

7. Make a list of everything you and your loved one needs on a daily basis. Go through the list and separate items by importance. Keep the list on a wall or in your binder (October 20, 2014 "Respite Workers"; this Blog), 

8. If necessary, add a wagon or small trailer to your scooter or wheelchair. You'll need to assess weights and feasibility, but it may be a viable option.

Here are some supplies you might need in an evacuation:

Regular medications (and backups)
Oxygen tanks and charger
Power chair or scooter, and charger
Cell phone and charger
Hand crank radio or small radio and batteries
Bed pillows, neck pillow
3 to 6 day food supply (requires no cooking)
3 to 6 days water supply
Flashlight with batteries
First aid kit (fully supplied)
Manual can opener
Waterproof matches
Cash
Emergency medical form naming contacts
Personal hygiene items

Extra batteries for everything
Glasses (and backup pair)
Extra clothes, jackets, underwear, socks
Adult diapers, pullups  
Blankets
Plastic bags
Wet wipes 

I hope this is helpful. I know many of us don't like to think about natural disaster or war coming to us, but it's a different world now and we need to be prepared. This is not an exhaustive list, nor are all items absolute. Take what works for you and leave the rest, but be as prepared as you can be. 

Don't get caught with your Depends down!

*You can find all kinds of evacuation strategies online. There is even a way to change your wheelchair into a bug out vehicle. But that's an entirely different blog post! Haha

STRANGE MED-FELLOWS

It's been a rough couple of months; months I never care to repeat. But I share our experience with you so you can watch for signs that might indicate a problem before it becomes one.

We've had a wonderful caregiver for several years and we trust her as a family member. So, when she came to me recently and said she had to leave because my husband was being inappropriate with her, I was completely and utterly shocked. While I had noticed a slight change in Jamey's behavior, I didn't realize the seriousness of the situation at the time (apparently, it had been going on close to a year). So, I confronted him and was equally shocked by his response. He didn't deny any of it, in fact, he didn't seem the least bit remorseful, or concerned about it. That's not my husband!

So, I dove back into full-time caregiving, still puzzled (and angry) about what had happened. While sorting through his medication, something didn't seem right about the dosages. When I looked at the amount of Mirapex he was taking for his RLS (Restless Leg Syndrome), it was somewhat higher than what he'd been taking before. Most family caregivers know Mirapex can be a source for addiction and lack of impulse control. People have gambled away family fortunes, gone on spending benders and become addicted to porn because of too much Mirapex. In our case it was porn, and acting it out.

Come to find out, because of the beginnings of PD dementia (memory deficit), Jamey had told the caregiver to increase his Mirapex so he could sleep better without his legs moving so much. Unfortunately, because he had always managed his own medications before, the caregiver didn't feel it necessary to let me know of the change, and rightly so--BEFORE dementia. 

Once notified, I contacted the doctor and he immediately cut the prescription in half. In addition to the addiction he was entertaining, he had also become fecal incontinent. In the course of 2 weeks he had fecal accidents up to 3 times a day. I was so tired and frustrated.  

Jamey's neurologist, confirmed that self unawareness and impulse control are all biproducts of this medication agonist (self unawareness explains why Jamey didn't even realize when he was having a bowel movement). Why is this still on the market? Because it works great for RLS! And for many people it doesn't cause problems. In fact, Jamey hadn't had issues with this medication for 25 years. Now, just by a slight increase, it unleashed a monster.

It's been almost 3 weeks since we cut his dosage in half and I'm seeing a glimpse of my husband again. The fecal incontinence is all but gone, and he is showing small signs of tenderness again (although, the neurologist tells us apathy is probably here to stay--part of the disease rather than medication). And, if I'm honest, the apathy has been one of the hardest things to deal with. He really just doesn't seem to care about what's he's doing or who he's hurting. Of course, knowing this is a symptom of PD still doesn't make it easy to deal with.

I don't share this to embarrass my husband, or to terrify those who are not there yet (remember, you may NEVER be).  I just want you to be aware of changes in your loved one's personality. It could be PD dementia, or a reaction to medication. Thankfully, I do all our finances, so I would have noticed a spending spree, but that is also something to watch for. 

I'm not going to tell you everything is all better and I'm over it. Even with the knowledge that it was the medication, I'm still a little uncomfortable around him now. I'm sure that will go away in time. But for now, prayer is my constant companion, and I keep caring for him as best I can.

If you have a caregiver that helps out, be sure you have her/him report any change in medication and/or personality, finances, etc. Catching it early, could prevent losing a good caregiver or a lot of money. 

I found this 30 minute video very helpful.

https://youtu.be/S2LP_5PC9LU

Decision-Making Fatigue

For caregivers, in particular, making decisions for your loved ones is a large part of the job. Whether the decisions are major or minor, it can wear us out to constantly be responsible for the household rulings. I didn't know there was such a thing as Decision Fatigue, but it is a very real phenomena that bears looking into. Following these simple suggestions can alleviate some of the distress brought on by Decision Fatigue.  I hope you find some benefit in these; I know I did.

The following article is re-printed from Kaiser Permanente Member Newsletter, December 8, 2021. 

Day after day we’re faced with many decisions both big and small — from what to wear and eat to bigger life decisions that involve family, money, and more. So, it’s not surprising that the stress of constant decision-making can wear on our mental health. If you feel overwhelmed by the thought of making another decision, then you may be experiencing decision fatigue.

Decision fatigue is the idea that our ability to make decisions can get worse after making many decisions.¹ According to Kaiser Permanente psychiatric social worker Leigh Miller, LCSW, “it’s when your mind feels mentally and emotionally overwhelmed from making many decisions at one time or in a row.” This can happen because the act of choosing takes mental energy. Studies have found that decision quality declines after an extensive period of decision-making.² So, if you have too many decisions to make, you can feel drained and stressed afterward. This may cause you to procrastinate or make poor choices.

Here are a few tips to help you overcome decision fatigue and take care of your mental health.

Create simple routines

“Decisions take energy,” explains Miller. So, cut down on the number of decisions you need to make by simplifying your routine. That could mean eating the same breakfast during the week or choosing the clothes you’ll wear the night before. You could even create a daily uniform so you won’t have to decide what to wear in the moment. “By creating routines that then turn into habits, we reduce the number of decisions we need to make — and conserve our energy for bigger tasks and decisions,” says Miller.

Make a list of priorities

Writing things down helps get thoughts off your mind and onto paper. Studies show that journaling can help reduce stress, relieve symptoms of depression, and increase resilience.³ And writing lists by hand is a good way to organize your thoughts and keep stress in check. Try writing down the top 3 tasks you want to complete or decisions you need to make. As you cross items off your list, it can help you stay positive and productive.

Ask for advice

The pressure to make decisions on our own can be overwhelming — even emotionally exhausting. When faced with difficult decisions, it may help to reach out to a trusted friend or family member. You can talk through your choices together. Connecting with others can be a helpful way to cope and make decisions, especially during uncertain or stressful times.

Find time for self-care

Our schedules are often packed with everyday responsibilities. But it’s important we also fit in moments for self-care. Try a brisk walk outside or take a midday nap to recharge for the rest of the day. “Deep breathing, stretching, and taking a moment to focus on how we’re feeling is a good way to slow down and give our brains a rest,” explains Miller. You’ll then be reenergized and ready to make decisions with a clearer mind.

Remember, small changes to your routine can make a big impact. So, take time for a mindful moment and make tweaks to your everyday habits. It can help reduce stress and decision fatigue — and support your overall mental health.

 

¹Jon Johnson, “What Is Decision Fatigue?” Medical News Today, July 6, 2020.

²David Hirshleifer et al., “Decision Fatigue and Heuristic Analyst Forecasts,” Journal of Financial Economics, July 2019.

³Joshua M. Smit et al., “Online Positive Affect Journaling in the Improvement of Mental Distress and Well-Being in General Medical Patients with Elevated Anxiety Symptoms: A Preliminary Randomized Controlled Trial,” Journal of Medical Internet Research Mental Health, June 13, 2018.