Is One of Your Business “Whys” to Care for a Loved One?

Is One of Your Business "Whys" to Care for a Loved One? (free resources)

It is for me, now, and it’s yet another new reason I am so incredibly thankful for my business and my administrative skills.

Some quick background details:

About six years ago, my dad was diagnosed with Parkinson’s Disease.

Up to now, his symptoms have been relatively mild. So, far, it’s really only been a slight tremor in his right hand and sometimes he says his right leg will “freeze” and not do what he wants. Medication helps alleviate these symptoms immensely.

And while he’s maintained good mental clarity, my sister and I noticed a distinct downturn in his energy this year. He’s slowed down quite a bit and mundane things like operating his cell phone have become increasingly daunting and confusing for him, which is not usual.

We certainly understand that being diagnosed with a serious disease can be very depressing, and it has been for our dad.

He’s a proud guy and always been very independent. He doesn’t want to be a bother to anyone, and he doesn’t want to be treated like an invalid.

So, we’ve all been walking on eggshells around the topic because he gets annoyed with us when we ask how he’s doing, would he like help with anything, etc.

It’s been tough for us as his family because he’s been very close-lipped about sharing medical information with us. Pure stubbornness. We’ve felt helpless and not sure how to support him.

And up until now, he’s abjectively refused to let my sister and I talk with his doctors, ask questions of them and so forth. So we’ve had to rely on whatever my dad chooses to tell us, which is very little.

Well, we all got a wake up call on December 5.

A neighbor, who is also a good friend of 20+ years, became concerned when she realized she hadn’t seen my dad up and about as per his usual habits.

She went over to the house and knocked, but there was no answer. Luckily, the door was unlocked, and she went inside.

She found my dad sitting in the bathtub, fully-clothed, thinking he was in the waiting room at the dentist’s office. He was also having some bizarre hallucinations and my sister later told me that he’s been complaining of nightmares the last month or so as well.

After being taken to the ER, the hospital kept him the whole weekend for observation.

By Sunday, he was much better. Still weak and slow, but back to being himself for the most part.

The conclusion thus far is that a recent increase in his Parkinson’s meds caused some added confusion which then caused him to forget when he had taken his AM and PM doses and he’d end up doubling up on those. So basically he was hopped up on his meds.

On top of that, he hasn’t been eating well, and the hospital found that he is anemic and severely B12 deficient.

Ya, fun stuff.

It is clear that he is entering the realm of not being able to care for himself and manage his own feeding. He used to love his daily French press coffee, but he says it’s all just become too much work.

It’s tough for him to admit, but my dad is realizing now that he needs help and is starting to welcome and warm to the idea of letting us in. We all need the love, help and support of others.

So, I am now entering a new role and chapter of my life: that of being a caretaker for a sick, elderly parent.

It’s times like this that I sing my gratitude over and over to the universe for my business that allows me the flexibility to step in and deal with things in a crisis, and to myself for setting my practice up in a way that gives me breathing room so emergencies are just a blip and don’t turn my business upside down.

When I’m confronted with situations like this, my first instinct is to go into strategizing and mobilization mode: assess the situation, take inventory, organize information and begin to plan. That’s the administrator in me and why I’m so exceptionally good at this business.

These same qualities that make me so well-suited to this business and the processes that I use with clients are now allowing me to be a long-distance caretaker.

So I want to share some of the things I’ve done and tools I’ve used and documents I’ve created in case anyone else in a similar situation or role finds them helpful.

One challenge my family has in caring for my dad is that while my sister lives in Seattle and her home is not far away from my dad’s, she doesn’t drive.

(She’s just always been a nervous driver and used to joke that everyone on the road was safer with her not on it. She realizes that has to change, though, and is taking the necessary steps.)

And while I do drive, I live about 45 minutes away. And let me tell ya, this past week of traveling back and forth every day has been super difficult.

The rest of my dad’s family all live back east in New York so there’s really nothing practical they can do to lighten the load.

He does have many friends and people in his life here who love him and we’re certainly going to accept any and all help that is offered, but obviously, the primary care always falls to family members.

So, technology is a HUGE blessing as we all know! Here’s how I’ve utilized technology to mobilize everyone and keep them up-to-date and in the loop.

Since I’m the one who drives, I have committed to being the primary person to take my dad back and forth to his appointments. (I should mention that his doctors reinforced to my dad what we’ve gently suggested to him: that it’s not safe for him to drive, at least for the time being).

  1. So, the first thing I did was set up an online shared calendar so everyone on my dad’s family and friends care team can stay apprised of his appointments and medical care. There are a ton of free online calendars these days and really it just boils down to whatever one best serves your needs and the level of functionality and features you want. One that we ended up using that was recommended to me is Cozy Calendar. It works on your computer and has a corresponding app for your smartphone. The free version includes calendar, task list and some other goodies, and you can upgrade for a very affordable fee to the ad-free version. Whatever online service you use, look for one that can be shared with everyone on your care team and used across all devices (i.e., computer and smartphone) so communications and information is collaborative and updated in real time.
  2. We were also getting hit with a ton of to-do’s so I immediately downloaded the Workflowy app on my phone and started an account for all of us to share to keep track of everything. With this easy to use technology, we can keep a running list of notes and to-do’s. Everyone knows what needs to be done and you can assign tasks and roles and sort things with simple hashtags. Workflowy uses an outline hierarchy and you can delete things or mark them complete as they are finished. To share a Workflowy account, whoever sets up the account can simply give everyone the login details so everyone who is privy can add to and update the list as well. Again, there are a ton of online to-do list/task management type apps out there to choose from. It’s whatever works for you. I just happen to use Workflowy because it’s super clean and simple and is organized the way my brain works. It’s also free. UPDATE: I used Workflowy initially and it’s still a great free program. However, once I got on the Cozy Calendar, it became easier to keep our to-dos stored there as well instead of in separate programs.
  3. Once I had a minute back at my computer, the next thing I did was put together a master list of important phone numbers and information in Word. The first page/section has the complete names, addresses and phone numbers of all of us (family and friends) involved in caring for our dad. The second page/section has the complete names, addresses and phone numbers of all my dad’s medical service providers (e.g., primary care physician, neurologist, etc.). And the third page/section is a list of all the online services, links and logons we are using to store and share information among our family and friends care team. Please feel free to use the template I whipped up for this.
  4. I also created a medication list in a Word document. Since my sister lives up there and is the one nearest my dad, she is the one who is managing his medications. He has various pills to take three times a day and because she noticed some increasing confusing on his part doing that, she started going over to his house every Saturday and organizing his pill box for that week. So that’s working good, at least until we can get some in-home care since neither one of us is in a position to move in with our dad for the moment. However, I wanted to familiarize myself with my dad’s meds for my own piece of mind, and I feel it’s important that everyone who plays a part in caring for him knows them as well. In the process of educating myself, I ended up creating this document that lists the name of each medication, what it’s taken for, the dosage and instructions and a picture of both sides of the pill (you can take a photo of each med with your camera phone or look for a picture of the med online). Again, please feel free to use my template if it’s helpful to you.
  5. While creating these documents, I also set up a folder in Dropbox and gave access to that folder to our family and friends care team. Along with the other aforementioned documents, I put his will up there, Durable Power of Attorney, Physician Orders for Life-Sustaining Treatment document, medical reports and anything else that needs to be kept in one place and is good for everyone to know and have access to quickly and easily. What’s so great about using Dropbox for this is that instead of having to update and send emails to every person any time a document is updated, all you have to do is either add them to the folder or share the file/document link. You have full control over who sees what. Dropbox also has an app that can be downloaded to mobile phones and other portable devices so a document can be opened, viewed and edited from anywhere. Dropbox is free, by the way.
  6. My dad’s medical insurance provider also has a fantastic online service where you can email doctors directly, set up appointments, get lab results as soon as they are done, etc. I have the same insurance and use the online service myself so I know how fantastic is. Since my dad hadn’t done this (technology is difficult for him anymore), I went ahead and got his online account set up. Now, my sister and I can get appointments scheduled and meds ordered faster, email our questions as they arise and communicate directly with my dad’s doctors without having to wait until the next appointment. If your/your family member’s insurance has an online service, I highly recommend you get on it pronto. It will make your life so much easier!
  7. I also had the great idea to start a private Facebook group and added all my dad’s immediate caretakers as members. This has worked out fantastically. We can update, share thoughts and ideas, ask questions, and communicate with each other quickly and easily from any device. One of the reasons I had this idea is because my sister is horrible about answering email and likes to text and while I prefer email and absolutely, positively HATE texting with a passion, lol. With the Facebook group, we can each communicate using our preferred method and it all goes into one central platform, which solves the other problem that all our communications were getting scattered and disorganized across several modes. This centralized everything and we’re communicating with greater ease and efficiency now.

To summarize:

  1. Set up online calendar.
  2. Create Workflowy account.
  3. Establish a Dropbox account (if you don’t have one yet) and create a shared folder for your family member’s care team to access important documents and information.
  4. Start a master phone and info list.
  5. Start a medication list.
  6. Where available, be sure to utilize the insurance company’s online account services.
  7. Set up a private Facebook group.

I hope this is helpful in some way to someone. We’re still in the very beginning stages of this care-taking role ourselves with all this stuff so it’s definitely going to be a journey. If you are traveling this same road, I would sure welcome any tips and pointers you also have to share and thank you kindly!

3 Comments Posted in Life, Personal Musings, Technical How To's. Bookmark the permalink.

3 Responses

  1. Helen A. says:

    Additional suggestions for people who need help managing their own or a loved one’s care:

    1. PATIENT ADVOCATES. Do a Google search for these people. They are the orchestra conductors of your care – going to doctor’s appts with you, taking notes, being an extra set of ears, arrange home health and other services, set up tracking systems to monitor medical visits, current meds, lab reports, insurance filings, etc. Some of these people manage small bookkeeping services, i.e., paying your bills, paying the home health providers, doctors, etc., seeing that people you employ get their W2s and contractors their 1099’s (yeah, that too).

    Four days after my diagnosis last week, I engaged a friend to help me navigate the (fortunately) unknown world of specialists and hospitals, as I have no family in my area, and know that during some of the treatment time I can’t do it all myself. She’s going with me to my first specialist’s appointment today.

    2. http://www.lotsahelpinghands.com/: Friends and family volunteers coordinate care through this calendar and action item list. Members in your circle see other’s contact info. 1 or 2 coordinators manage the site. All needs can be listed, such as food, grocery shopping, medical transport, letter writing, bill paying, pet care, car inspections, what ever you need.

  2. Patty says:

    Thanks SO much for this. It is VERY timely. I see this day coming closer with my husband’s mother (age 92 and living with us). She’s doing okay now, but has gone down quite a bit in the past year.
    Y’all are blessed to have a good support system going!

  3. Vibeke says:

    Thanks Danielle, these are amazing initiatives.

    Even though I still have healthy parents, the thought is always there of what to do when that change, especially since I live abroad.

    Your post made me think that there is still a lot I can do remotely with the tools we have available to share information and connect people living in different places.

    As you say, we all need the love, help and support of others, and being an organizer there is a lot we can do to contribute in a practical way to make it easier for the community of friends and family to communicate and share important information. Thank you for the inspiration.

    Sending you lots of strength and warm wishes.

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