The Really Hard Stuff…
Welcome to part two of this series reviewing the early years of caregiving, and how important it is to get as much done as possible while there is still time. Review the April 14 blog for my own “origin story”, and some suggestions to get the difficult conversations rolling.
Let’s delve into the really hard topics now:
Prepare Their Finances
This could easily be the most difficult conversation you’ve ever had with your parents. Usually the last remaining vestige of their independence, most older adults keep this information strictly to themselves. Sometimes it’s embarrassment that they haven’t saved enough, sometimes it’s fear of letting you know how much they have. Some people just plain think it’s undignified to speak about money.
No matter how your family has handled financial discussions in the past—even if you avoided them—it’s time to break through that wall. In caregiving, you have to speak about everything.
End of life documents
Refer to multiple blogs I’ve written about the importance of having and using end of life documents. While things are relatively calm, this is the time to update all of the documentation. Make sure their trust or will is up to date, and review the types of Power of Attorney they have. Make copies of the Do Not Resuscitate—that’s one document you need at your fingertips if things take a disastrous turn.
Financial hurdles Of Caregiving
You can’t help your loved ones make plans if you don’t know exactly where they are financially. While there is little you can do at this juncture to improve their financial standing, knowing where they are will help you make the best possible moves as things start to deteriorate. While you are at it, you should revisit your own finances, since you (and your siblings) might need to step in as time passes to support your loved one. I know many families that chip in each month to make sure their parent is in the best possible location.
Prepare Their Space
In part one, I detailed our long-term plans to bring my parents into my house. Most people don’t have that kind of time or money to work with, but you need to explore all of the options you do have.
How long can they live alone?
My parents could probably have stayed in Florida a little longer, but since I had moved all of their doctors to Nevada, it just made more sense for them. So caregiving began. That was my selling point, and it worked. You need to take a long, hard look at their living situation to determine how long they can stay living independently. Part of that decision, in actuality, is your convenience. Sure, if they are in town you can drop by multiple times per week, but what if they are hours away by car or plane? It is extremely difficult to do The Job from that distance while you are trying to raise your own family.
What hazards can you get rid of?
No matter where they are going, it’s important that you make their space as safe as possible. Falls are the number one safety issue for the elderly, and you need to minimize that as much as possible. The largest question mark in this category for me was driving. It was relatively easy for me to minimize Mom’s driving, because she had a nurse, but you need to ensure that they can continue to live as independently as possible, but with the highest level of safety. Take a critical look at everything in their lives that you can. What can you take off their plate?
Get Medical Help
Moving my parents’ medical team was extremely important when they relocated here, and was time-consuming as well. Minimally, you need a good working relationship with all of their doctors. While I know how hard it is to adjust your schedule, you will need to attend medical appointments of all kinds moving forward, so find a medical team that is satisfactory to you—and convenient!
One of the biggest things is to make you not only eligible to receive all medical documentation and communications, but to make sure you are the primary phone number on the account. (When you’re the one caregiving, you become the main contact. Make it happen.) I found this out the hard way, when Pop failed to tell me a key piece of information that was conveyed to him by phone by his cancer doctor.
Prepare Yourself
I’m going to equate being The Mayor with getting married. Yes, it compares to caregiving. Both of those situations take a close, intimate relationship and push it very abruptly to a whole new level that you hadn’t fully considered in advance.
Perhaps like many of you, I saw my parents as completely indestructible. They had never shared any medical issues with me, so I just lived in my little fantasy world where everything was roses and rainbows with them.
Then, without warning, the rug gets pulled out from underneath your feet. You get that call from the emergency room. You get that diagnosis. Your life changes forever.
The Mayor Academy
We Mayors have a club, you know. Yeah, I didn’t know it either, but we really do. It’s a super secret society with a significant entrance requirement. I’ll even tell you the password, that’s how much I love you. Here it is: “Oh, shit.” Just say that three times in rapid succession after you hang up the phone from the emergency phone call, and you are “one of us”. To find other members of the club, all you have to do is mention that you are caring for your parents. All of a sudden, other Mayors will self-identify, and you will be in business. Over 25% of adults are supporting or caring for a loved one, so we are a very large crowd. We’re just not a very loud group, so you have to seek us out. Once you find one or two people in a similar situation to you, you are in business and have officially entered The Mayor Academy. This is a self-study type of organization, so you will need to talk to other Mayors on an ongoing basis to find all of the helpful hints and tidbits of information that we have gleaned over the many years of caregiving.
Become informed
Something turned you into The Mayor. For me, I became an invisible Mayor for many years, until I was pressed into service by Pop’s heart problems (which is funny because it was the cancer that got him!). Once you are called in from the dugout, you need to find all of the information you can about whatever the current problems are.
Refer to prior blogs about how to research different diseases and ailments, and particularly how to speak to the medical team. Another self-study situation, you will need to speak to anyone and everyone that you can to get first-hand information and tips for dealing with the problem. In addition to making it part of every conversation you have, you need to do an extensive search on the internet to find out as much about the disease as you personally can handle. As I continued caregiving, I became a wealth of medical vocabulary through the years, and I’ve shared with you how valuable that became when dealing with specialists. I suggest you start with basic vocabulary, and move on from there.
Share your fears with your team
So I, as the youngest of five children, became The Mayor quite abruptly when Pop shared his plans with my siblings. Really, nothing changed at that point, but I knew I would need my siblings throughout this journey. So I was very honest and forthcoming about the incredible fears and concerns that I had about the future.
I did the exact same thing with my husband and my best friend network. It is extremely important that you begin to build the kind of relationship with people you love that will serve both of you as the years pass. As things declined and ultimately ended with Pop, and as things continue to fly down the hill with Mom, I now have a strong team that I can reach out to any time of the day or night for support. Yes, it’s my name on the documents, but I can’t do The Job successfully without constant, deep communication with my team. And it starts with you being vulnerable.
Take A Vacation. Now.
I can hear you right now: Seriously, Pat, you wanna talk about Hawaii at a time like this? Damn right I do. Your time is about to be consumed with their lives and medical visits. As things decline, more and more of your independence and free time is going to be given over to their needs. Not only time, but money may become more of an issue for you, as you require time from your own career to support their medical and physical needs.
You’re entering a world where your needs are going to fall even lower on the totem pole of importance, and your time will not always be your own to enjoy.
So, yeah, take a vacation. Go somewhere you’ve always wanted to go, with the people you love the most. Relax, recharge, enjoy yourself.
Consider it a honeymoon.
THANK YOU FOR READING THIS FAR
Wow! You made it! Thank you for reading about the early years of caregiving!
Hey, since you’re here! You may as well check out getting a second opinion, here, or if you’ve read that, check out more dementia problems, 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!
Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.
Oh! And don’t forget to check out my video series by CLICKING HERE!!!
Resources
https://www.aplaceformom.com/caregiver-resources/articles/after-dementia-diagnosis
https://www.agingcare.com/articles/warning-signs-of-dementia-to-look-for-139753.htm