In this post: If you’ve found yourself in reversed roles with your aging parents, you may benefit from what I’ve learned as my parents’ caregiver.⇒
I know my audience.
If you’re 30, you probably haven’t gotten past the title. If you’re 40, you’re too busy to do more than scroll through the photos. But if you’re in your 50’s and 60’s, you already know there’s something in this post that will be very familiar, that may perhaps touch your heart. And if you’re over 70 or 80, you’re bookmarking the post to send to your kids.
This past year has been one of the most difficult of my life. Yet in some ways, it was among the most special.
I’ve been wanting to write this post for a while. I know from the comments and emails I receive that many of you are in the same position as me, at the same or similar stage in life. But given the public nature of blogging, I couldn’t do it until now.
You see, last week, my dad passed away.
I’ve spent the past year and a half as his primary caregiver, a role I enjoyed, learned from, was exhausted by and will always cherish. Today I want to share my story with you, particularly what I learned to make this stage of life easier. At the bottom are my tips for those who are caregivers, along with some hints for those who need caring for themselves.
But before I get to the practical pointers, let me piece together the puzzle of emotions that has been the recent past. I promise to keep the medical details to a minimum, because that’s not what this post is about.
(This post was originally written a few years ago, but the tips are still relevant, so I update it every so often to share with new readers. My mom passed the following year, so the are once again joined together.)
Up until a year ago, my dad had been living with well-controlled cancer for 5 or 6 years. He had various treatments that he had tolerated well. Every time one regimen stopped working, his doctors presented other options. Life went on pretty close to normal and his disease was barely an inconvenience. He and my mom continued to dance, a hobby that had become their lifelong passion. In fact, throughout this period, my dad had only one concern, a concern that would ultimately overpower their dancing career.
My mom began to forget the dance steps. Then she had trouble finding her things. And soon it became clear that she had all the classic signs of dementia. This, unlike his own illness, became dad’s source of stress. I had always been close to my dad, but now we began talking or texting daily. As mom became increasingly disoriented, she also became highly agitated, even sometimes violent.
The situation progressed for several years until finally, about a year and a half ago, we knew it was time to force a change. My parents were living about an hour away in another state. Mom refused to move (even when she was well) and also refused to allow help in the house.
That year, when my parents came to visit to celebrate Father’s Day, dad and I had lined up several appointments to look at local apartments. Mom came along but reacted explosively to the idea. Two days later, dad called to tell me he wanted to proceed with one of the apartments. Given her reaction, I was both surprised and impressed, but I quickly got on board and became his advocate and accomplice. The rest of that summer he and I schemed and planned, through the purchase, minor renovations and decorating the place. I wrote about it in these three posts: The Plan, The Living Room, The Bedroom.
It was a joy to work on that apartment with my dad. We texted floor plans, furniture ideas and various details back and forth, all meant to honor my mom’s style and taste. But that summer also brought with it a medical challenge for my dad. His disease was progressing and after many years of avoiding it, he now needed to start chemo. I’ll never forget the lunch we had after that doctor’s appointment. We sat at an outdoor cafe on a Manhattan street and he was as cheerful and hopeful as usual. Then he gave me that big warm smile and said, “I’m not owed anything. I’ve had a good life.”
A few weeks later we moved them into the new apartment. We knew it would be easiest if we left their furniture in their old house and simply took as many personal items as we could fit into the cars. By now, mom was so disoriented that she hardly recognized her own home and we feared the disruption would make matters worse. But the situation had become untenable and was a danger to their lives. Dad’s first chemo had made him terribly ill. Mom was incapable of taking care of him but still refused to have help in the house. It had gotten so bad that when we picked them up to move, we drove him straight to the emergency room near our home.
I’ve always felt this was divine intervention. He was simply dehydrated, as he was not being cared for, and he stayed only a few days and was fine to go home. Mom stayed at our house while dad was in the hospital and this interim experience appeared to change everything. She rose to the occasion when he was released, worried about his health and willingly went to the new apartment.
I honestly have no idea how we would have gotten her there had he not needed to go to the ER.
Immediately, we got them round-the-clock care, but mom’s condition eventually deteriorated, and she wound up admitted to a memory care facility. I’m happy to say that she’s thriving there and dad had lots of opportunities to visit her, too. With mom appropriately cared for, they shared many lovely moments and their relationship returned to the beautiful romance it had always been.
The past year has been all about my dad and I cherish the time we’ve had together. We had time to say everything that needed or wanted to be said. We celebrated occasions and enjoyed the small moments, as well. Throughout his ordeal, his only concern was how my mom was doing.
And it turns out, he was right. He had a good life. He was loved by many and spread cheer and optimism everywhere he went. He and my mom shared a lifetime of love, the truest of sweethearts. To him, family was everything and he made sure we all knew that. I am the person I am today because of my dad, and I am surer about that after the past year, than ever before. I will miss him more than words can express, but as much as it hurts, I wouldn’t give up this time with him for anything.
Tips for Caregivers of Aging Parents
1. Divide and conquer. – If you have siblings, do your best to share the work, even if the tasks are not evenly split. Some help is better than no help. If siblings are not an option, accept help from friends. Even your kids can help ease the strain.
2. Talk to the appropriate experts. – Lawyer. Accountant. Elder care counselors. These professionals can offer immeasurable help and you will need them again at various stages. Establish a relationship as soon as possible.
3. Have the difficult conversations early in the game. – I cannot stress enough how important it is to know what your loved ones’ wishes are. Ask the hard questions. All of them. It’s a lot easier to have the conversation when the end is theoretical than when it’s imminent.
4. Say everything that needs to be or wants to be said. – Make sure you tell them that the remaining spouse will be taken care of. Try to find out anything else they might be worried about. Ask questions about their past. Not the obvious ones that were answered long ago, but the little known facts that were nearly forgotten.
5. Find out where everything is. – This goes without saying, but no matter how organized they think their affairs are, there are likely to be things that no one knows where they are.
6. Learn about Palliative Care. – This was a lifesaver for us. Long before you get to Hospice, Palliative Care can make everyone’s life more pleasant. It eased the transitions every step of the way.
7. Be sure to enjoy the person’s company. – Don’t forget this is the same person you always loved. Maintain their dignity by enjoying who they are.
8. Be kind to yourself. – I had a hard time with this one. Make the nail appointment. Get your hair done. Sleep late from time to time. You’ll need the strength this recharging can give you.
Tips for Those Needing Care
1. Don’t resist help. – Your family wants to help you. Let them. Accept the help of professional caregivers, too. If you’re open to it, you’re more likely to find people you connect well with.
2. Get your papers in order. – It amazes me how many people of advanced age do not have the appropriate papers filed. If you want control of your affairs, make these decisions as soon as you can. A will, a health care proxy and assign power of attorney. Don’t wait until it’s urgent. Do it while it’s still an eventuality.
3. Make your wishes known. – Your living will should be as specific as possible. Make sure your loved ones are clear about your wishes, which means talking about more than just a DNR. Talk about it clearly and thoroughly. Then it doesn’t need to be dwelled upon.
4. Share some stories you’ve never shared. – With the paperwork out of the way, you should enjoy your loved ones. Share the stories that got lost in the hustle and bustle of busy lives. Even better, write a “book” of stories. Some day your family will really appreciate it.
5. Gift your family with your interest in their lives. – It’s easy to get preoccupied with the details of aging. Maintaining an interest in your family will keep their visits pleasant and frequent. This is particularly important with grandchildren and younger family members. Now is the time to enjoy each other.