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.