The House Isn’t Always Burning Down

January 19, 2020 was a normal day. I worked, came home, made dinner, sat in the den with Mom, did some schoolwork and went to bed. January 20 seemed the same. I got up like normal, went to school, only to come home to Mom on the floor moaning. That broken hip started the fastest and worst decline we have had with dementia.

But, November 2018 to January 2020—not a single thing happened.

My house isn’t always on fire. There are many periods of time when things are going along quite smoothly and quietly. Many weeks, months even, without any doctors appointments or tests or trauma of any kind. 

It won’t last indefinitely. I know that. Something is always coming, brewing in the future, waiting to attack and make our lives more difficult and frightening.

But, sometimes, for quite a long period if we’re lucky, we get a break.

And it’s glorious.

Use This As Recovery Time

When we are in crisis mode as Mayors, we are on call 24 hours a day, seven days a week. We can’t turn off our phone, take a weekender with Sweet Husband, or do much of anything outside of the house. It is pure torture and highly stressful. That continuous, long-term stress is very bad for our overall mental and physical health, which is why these periods of calm are extremely important for us. We need to take full advantage of these peaceful episodes in The Job:

Take some respite care

These are the times you call on your team to give you some much-needed respite care. Whether it is Big Brother Bob flying in for a week, or our private nurse staying over for a long weekend, now is the time for me to get out of Dodge! I know that money is as tight as the veins in your neck during this stressful period of your life, but find a way to escape from your everyday routine and decompress. It will do you so much good in the long run.

Handle your own health

When Pop was declining, I didn’t even realize how much we were neglecting Mom’s preventative health. During this restful period, take inventory of your own health, and make sure you keep up with your own mental and physical doctor’s appointments. This is the time to get those teeth cleaned and get those yearly tests done—while you are relaxed and have a bit of freedom.

Feed your own soul

I’m sure you have given up many different things as The Mayor, and now is the time that you can go back to your favorite pastimes. Whether you haven’t been baking as much as you like, or reading those beach novels you enjoy, take the time now to enjoy things you have been missing. For me, it was hiking in the mountains with the Luna Dog, that fed my spirit and helped me stay grounded.

Concentrate on your family

My own kids, I know, were often neglected by me during times of intense stress with my father. Sweet Husband stepped in and parented them beautifully, but I know I missed many signals, outings, games and concerts while they were growing up as I cared for Pop. Now is the time to get that ice cream in the middle of the day, sit down and watch that terrible movie, or take them on your hikes. 

Spend some time shoring up relationships

In retrospect, there were weeks I didn’t see Bestie Boo when my parents had health emergencies. Months I’d go without texting my friends, and forget a happy hour! When things calm down, take that extra effort to reconnect with people, letting them know that they are important to you, even when the house is on fire. You will be very happy you reinforced those relationships when being The Mayor ends, and your important relationships are still intact. 

How Will You Know The Last Crisis Is Over?

In my extensive experience, I always knew when the crisis was over. It would be funny if it wasn’t so stressful. You will have “one last” doctor’s visit, a “final” chemo treatment, or the last follow-up with the specialist. 

It isn’t when your loved one gets out of the hospital or rehab. Don’t be fooled by their discharge! Their discharge just starts the follow-up appointment cycle, which for me was the worst, longest period of any emergency.

You’ll know when this crisis has passed. All of a sudden, there is nothing left on the calendar. No physical therapist upsetting Luna Dog, no nausea from chemo anymore, no medications coming to the door. You’ll know.

The final piece of any crisis is your personal records. We have talked about this extensively for years now, but a reminder is in order. While you are in the crisis, you won’t have time to update your personal medical records for your loved one. Now is the time—before it escapes your memory—for you to update everything that happened. Concentrate particularly on any new doctors that have been added to the list, and especially any new medications that will be ongoing. Don’t forget to update the prescription card you carry with you, too. 

Do you transition away from The Mayor role?

I received a message from a friend from my childhood recently. Exactly my age, she and I were very close through middle and high school, but lost touch during college. We’ve reconnected through social media, for which I’m very glad. She has taken on the role of The Mayor only recently, due to her husband having an accident. It got me thinking about what happens if they, in fact, get better?

She’s in an enviable position, since there will be no “better” for Mom. But it did make me consider how—if possible—a person can switch being The Mayor on and off like a light switch. 

For me, donning the crown associated with my position as Mayor was like cementing it to my head—now that it’s on I own it until it dissolves off at Mom’s death. Even in periods of calm, health, and respite, I’m still The Mayor. 

Causing me to do some reflection, I realized that I have toggled between Mayor and Wife several times, during health crises with Sweet Husband. Actually, with adult children I now toggle between Mayor and Mom when things occur with them—whether it is a health concern or other item required to learn “Adulting”.

My advice, if you ever have the chance to take off the crown of Mayor, is to make sure you do it completely. I return the reins of power back to Sweet Husband as quickly as a light switch once the medical crisis passed. While I am a good Mayor, it’s more important that I be the best Wife I can be. 

Building Up The Relationship With Your Loved One

Nobody—not even you—is happier about the return to peace and calm than your loved one. They are the ones who had to endure the tests and treatments and therapies and medication. You were only hero support. So, while things are calm and restful, I recommend shoring up the relationship you have with your loved one, so that you will both be strong enough to weather the next storm. Yup—this is when I get to just be a daughter again.

Spend time doing things you both love

Mom and I have a very long relationship with Bingo. Before it was legal, we would play the family game at home with the wheel for the balls and the beans on the card. So, the first thing we do anytime we can relax, would be to go to Bingo together. Whatever that is for you and your loved one, take advantage of this time to enjoy it together.

Talk about things aside from health

Pop in particular would get so sick of talking about his own health that the subject was basically forbidden during periods of health. That generation hates the spotlight on them for any reason, so try to make a point of avoiding talking about health-related topics during this golden period. 

Give them their independence

During chemo, Pop was too weak to drive properly, but the very first thing I would do after treatments were passed would be to give him the car keys. It was an important symbol to him of his independence and, frankly, his manhood.  

Send them to visit others

Being stuck in this house, in Las Vegas, became almost prison-like for my parents during periods of illness. As soon as they were strong enough, I would send them back east to visit people. It gave them something to look forward to, and it made my siblings feel so much better to see them visiting.  

Make that special meal

Particularly after chemotherapy treatments, I would make a special meal for Pop as soon as he had his appetite back. So, yeah, get that chicken parmigiana going with strawberry shortcake for dessert. And have two pieces!

Watch For Ongoing Patterns

This may or may not work for you—it worked for Pop but not Mom. 

Pop had a health emergency every 18-months. No kidding—it was like clockwork. It was so regular that I started planning vacations and other things around the 18-month calendar. If you are lucky enough to have a vague idea of how much peaceful time you have coming to you, make sure you use it to your advantage. 

Because…Sooner or Later…

The house will catch fire again. 

That’s why I am always on alert, why my phone is never, ever off, why I have layers of support and protection around Mom.

I don’t know when, but something is brewing.

And we need to be strong enough to handle it.

Because, Boo Boo, we are The Mayor. 

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about your new job!

Hey, since you’re here! You may as well check out part 1 of death vigils, here, or if you’ve read that, check out part 2, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

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