My Caregiver Wish List

This year, my children’s Christmas lists were, like my children, very different from each other. My daughter’s list was detailed, with a key explaining which items needed to be ordered online and which could be purchased in town. She started the list with a lovely statement about her gratitude to us as parents and helpfully provided direct links to products to save me time (and make sure I ordered the right thing).

My son? I’m still waiting for any kind of list. There have been a few verbal requests, and he has put two items in my Amazon cart, but that’s it.

Caregiving Challenges

Me? If I were to get an opportunity to tell Santa what I really want, my request would probably focus on what I really need as a caregiver:

A Game Plan

When dad moved in with us at the end of May 2014, everything happened rapidly. He had been living by himself (with significant help from us in the form of multiple visits daily to ensure medication compliance, etc.), he sustained a subdural hematoma from a fall and Wayne felt it was critical for him to live with us. He threatened to sign himself out of the rehab hospital, and next thing we knew it he was living with us.

Santa, it’s a little late for us, but if you run across any families who may be on the verge of taking on the task of caregiving, tell them to pour some hot cocoa and get on the same page. They won’t regret it. Caregiving works best when it is a joint family decision, not a situation you back into by necessity.

A Housekeeper

As I have written about here, and as anyone who steps foot in my house knows, housekeeping is not my forte. I am not proud of this, and am always trying to improve, but it doesn’t get any easier when you add the component of an elderly relative with self care challenges. In addition, we are almost always home; the wear and tear on the house is brutal.

If you really want to delight me, Santa, tuck a housekeeper or two in that sleigh and deploy them weekly (or even monthly), at least to the one bathroom in the house none of us can bear to go into anymore.

An Elf Who Specializes in Home Mobility Adaptations

There are so many of our home components that need to be adapted for Dad to be safer (and us to have more peace of mind): the toilet seat needs to be raised, the throw rugs need to be removed (because they are tripping hazards), there need to be grab bars multiple places in the bathroom. We need a shower chair. Some of these things are easy to do (and affordable enough). Some are “bigger” modifications. But they all take time and planning.

Santa, a grab bar may not be very festive but the prospect of peace of mind from less worry of falls is pretty darn merry.

A Train of Thought

While a trip on the Polar Express sounds charming, what I really need this year is for my own personal train of thought to make it from the home station to the destination depot without multiple unplanned detours along the way. Without a sprint to the bathroom when I hear the sounds I’ve come to know as impending instability. Without a request to turn the tv up (again).

Santa, all I want for Christmas is to to be able to remember where I put the ………

The Ability to Go to the Bathroom Worry-Free

You know how infants always seem to get fussy when you sit down to eat? There’s a similar principle with the elderly: close the bathroom door to do your business and the “get up too fast/get dizzy/find yourself at risk of falling” cycle activates. It’s UNCANNY. I’m not sure what the cumulative effects are of always being worried, but I know they aren’t health boosters.

Four minutes, Santa. Four. Worry. Free. Minutes so I don’t have to ho ho hold it.

Infinite Copies of the Meds List

I have written the Dad’s meds list by hand approximately 2,435 times in 2.5 years. Okay, maybe not that many but it feels like it! I do know that there are apps for this kind of thing, but I haven’t started using one yet. You would think, in this era of Electronic Health Information, that this would all be in the cloud. Right? I can attest that the last thing on your mind when you arrive at the ER after a fall is having a hard copy of the meds list.

In addition to these infinite meds list copies, Santa, they need to magically revise themselves when something changes. While we’re at it, this magical nothing-critical-is-ever-forgotten world will also make his insurance cards, social security card, and ID card magically appear when needed, rather than being at home where they are not helping anyone.

A Visit by the Mobile DMV

Spoiler: There isn’t a mobile DMV. But this is my list and Santa’s my benevolent all-giving fantasy guy right now so let me go with it. It didn’t seem like a big deal when Dad’s driver’s license expired, but then there was the document we needed to have notarized, with an ID for proof of identity, there was voting (he voted absentee but in general, it could have been requested at the polls), and there will be other life events.

Santa, if there isn’t a mobile DMV, can you and the elves come over and help with the arduous process of getting him dressed, to the car safely, out of the car at the DMV, tolerating the line, understanding the instructions he is being given in order to have a valid State of Florida ID. Please?

Unlimited Legal Assistance

Growing old, even if your life is relatively uncomplicated, brings with it the need to get legal affairs in order. Power of attorney, a medical representative, DNR orders (if you choose to have a DNR order), a will, and a host of other legal matters that need to be put in place. That doesn’t happen for free, and it is not always straightforward.

Santa, I imagine in today’s litigious society your attorneys may be busy putting warning labels on toys and all, but aren’t they free about ten months out of the year? Could they help a caregiver out? (And while we’re at it, an accountant as a stocking stuffer would be a plus.)

More Health Professionals Who Care About The Family

As I mentioned in this post, Dr. Daniel Bower, an oral surgeon who saw dad when he had a dental emergency, is the only dentist, doctor, nurse, or other health professional in the past 2.5 years who has looked at Wayne and me and said, “and how are you doing?” It’s not that we would have flooded him with the whole story or a litany of our challenges, but honestly the fact that he acknowledged that caregiving is hard on the family was big. 

While I could cite statistic after statistic confirming that caregivers experience stress, I know you have toys to make and flight plans to file, Santa. Just remind medical professionals to take a moment for empathy with caregiving families, okay?

Agencies and People Who Tell it Like it Is

One of the biggest frustrations of caregiving is the fact that well-meaning people tell you things that end up not being true or relevant to your situation. Relatively early on, someone with a home health care agency recommended another agency that, according to them, “will help you fill out the Aid in Attendance paperwork and file it — it’s just something they do.”

While the agency did help us with the paper work (which was denied after a months-long wait), when we eventually ended up at the Leon County Veterans’ Affairs Office, they said “why didn’t you come to us first?” We didn’t know to do that. The original agency we were referred to does help families fill out the paperwork, but judging by all the emails we still get from them offering to “manage our wealth,” it’s clear they had an ulterior motive.

I could give other examples but they are all the same essential model: someone tells you something they think will be helpful and you end up chasing your tail.

It also takes a lot of digging to find some incredible (and often free or low-cost) resources. We finally got hooked up with the free in-home respite from the Alzheimers Project here in Tallahassee, which uses Americorps volunteers.

Okay Santa, this is a lot to ask but we could sure use more “nice” information givers (who give the right info) than “naughty” (who mean well but send us down the wrong path). Our family’s bottom line and peace of mind are riding on this.

Patience

Dad’s cognitive issues are minor in comparison to others I’ve heard about. I know I have high expectations of myself, but I am saddened, often, about the fact that I find patience in short supply. It’s not his fault I didn’t plan ahead to be prepared to leave for a doctor’s appointment, not his fault that whatever happened in his brain stole his empathy, that it doesn’t do any good to say, “If I could just send out these four tweets, I can answer your question.”

I want patience, Santa, and I want it now! 

Grace for the Big Moments

The last 2.5 years have had their hurdles: the dental emergency, the head and neck cancer diagnosis with the related 35 radiation visits, 53 hours without electricity (or tv, his one constant) during the Hurricane Hermine aftermath.

The medical parts of Dad’s situation have compromised his privacy and eroded his dignity. More than the physical procedures, I will come away from this period of caregiving with a few significant moments embedded in my brain. I’m grateful for medical professionals who undoubtedly studied for years and learned complicated math, science, and anatomy, but for whom the real test is looking someone in the eyes who may or may not completely understand and saying, “this may be cancer. This could be very threatening to your survival.” Dr. Philip Sharp and Dr. Joseph Soto have both passed that test with flying colors.

I know you can’t take away those life altering moments, Santa, and I know that it is a privilege and duty curated out of love to be present for them. While hoping for a season of magic for children worldwide, I also ask for an extra helping of grace to be the caregiver Dad deserves.

Caregiving Challenges

31 thoughts on “My Caregiver Wish List

  1. God Bless you all. Patience would definitely be my first item on the list. It’s hard to maintain any but it’s important.
    I just lost my dad last month at the age of 96 after caring for him and my mother, who is still living and 91, the past three years – alone – so I know how stressful and life changing it is. Be thankful you have a husband and children there to help take some of the load off your shoulders, but I know and understand the worry, and the feeling of isolation that comes with caregiving. When it’s a child, you know you can dress them, pack up their necessities, put them into the car and go but with an elderly adult, it’s not so easy. Everything has to be planned out, extra time taken for entering and exiting cars and buildings. It’s being the eyes and ears for them as well as the doing the answering.
    Some tips that might help.
    Keep their important ‘card’ items in a small wallet and keep it with you or in a safe place you can get it in a hurry. Make a list of medications, allergies, and doctors names, specialties, and contact numbers and keep it in a file on the computer. Print at least five copies of that list, one for your husband, one for you, and the other three available to replace the others after the ER, paramedics, or doctor’s office takes yours. (They don’t make a copy and hand it back, it just disappears.) This tip is also a good one for you to have if you, your husband, or kids are on meds or have allergies. Sometimes it’s hard to remember everything when you’re dealing with an emergency. When meds change, you update it in the computer file and print out five more copies.
    Your local fire department can provide you with a handy little thing called a File For Life…it’s a little red envelope with a clear pocket in front that sticks on your refrigerator. In it is a form you can fill out for your father containing all of his important medical information and so when an emergency in the home happens, it’s right there. The paramedic who gave it to me said it’s one of the first things they look for when they enter a home. If you can put it by the front door, even better.
    Another thing to look into, if your father is in anyway in danger of wandering off, is a GPS bracelet that you might be able to get from your local sheriff’s department. After my father, who was legally blind and deaf, and suffering from dementia and sundowning, took a joy ride in my mother’s car, it was recommended to us. We never got that far because he passed away about a month later. There is a waiting list.
    The one thing I’ve learned in the past six months when things were escalating and medical issues were multiplying is that when seeking help, the ones in the know are the local first responders. The police, paramedics, and fire department have loads of information and are so great dealing with ‘silver alerts’. Don’t hesitate to ask them who can help. Also your local hospice groups, even though you don’t need them yet, have so much information, they’re overflowing. Assistance is there, you’re not alone, and God Bless you because I know your father appreciates you more than he’ll ever tell you.
    And may Santa bring you your wish list, and a stocking full of patience. <3

      • You’re welcome, Paula, I hope it helps a bit. I know it definitely helps to know you’re not alone. There are many of us having to take care of our parents as they age. It’s wonderful that they are living longer, but it is hard to watch them age and lose their independence. By keeping them with family or in their own homes, it helps preserve that independence they earned and their dignity. Good luck and best wishes. Big hug to you too.

  2. I had my mum live with us for 6 weeks after a knee replacement – I am forever in deep and abject awe and admiration for those who care-give long term. 2 and a half year and counting is pretty spectacular. He is very lucky to have you in his life and you are doing an amazing job. I hope your Christmas is trouble free and full of joy x

    • Thank you, Leanne. The whole situation makes me think a lot about what my kids are going to have to deal with when my husband and I are elderly …… and try to plan for the situation (which can be hard). My two parents are still living also so I think we may be in the caregiving biz for a while. We’ll see. Thanks for your support and positivity.

  3. The short time I had to take care of my husband when he was ill left me exhausted. I could have used a lot of things on your list. I wish you success and peace in your care giving role!

    • Thank you! I appreciate that — writing is so great for processing things (and it’s just fun in general).

  4. Oh boy do I hear you loud and clear! I am in the same sinking boat, but what can you do? I can’t help with the housekeeper, but I do have a printable caregiver’s manual on my site. You print it off and put it into a binder and it holds everything you need for a trip to the hospital or just to a caregiver. Check it out, it’s free!

    • I totally knew you would relate!!! Every time someone asks if I’ve read the 36 Hour Day, I’m kind of like, “I would if I had time!” (but a friend suggested audio which would work fantastically for me). Thx for pointing out the manual – I’ll check it out!

  5. Paula, I just really appreciated all of your “wishes.” I’m entering into that world, and I only hope when things are where they are with you I have your patience and sense of humor, as well as thoughtfulness.

    • It’s quite a world — I am in such a different frame of mind about it now than I was 2.5 years ago — sending you much support as you start on your caregiver journey. There really are lots of resources out there — and although you feel stretched so many different directions, it’s wise to try to take advantage of them when you can. Let me know if I can help.

  6. Paula,

    You know I was a caregiver and have tremendous respect and empathy for anyone who takes on such responsibilities. You have articulated the caregiver’s wish list extremely well. For me, patience was the most elusive. And then there is the poignant aftermath: “Did I do enough?”

    • Yes, Jim, that’s exactly it. As with parenting, you question your choices constantly. And I know my mother in law, who had the most EXACTING STANDARDS EVER, is watching down on me, lovingly but firmly just like when she was around! Thank you for your comment and sharing your experience caregiving.

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