As part of TODAY’s Caregiving series, special correspondent Joan Lunden shares what it’s been like for her to be cared for since she was diagnosed with an aggressive type of breast cancer in June. Joan spoke with TODAY contributor Agnes Pawlowski about what she has learned, going from being a primary caregiver to being cared for during her cancer treatment. This is an edited transcript of their conversation.
I’ve ended chemotherapy. When you do your very last infusion, which I did on Dec. 3, it’s like, Whoopee! The day has come, it’s over. But my doctor warned me that you have to be careful of that because it’s not necessarily over yet. You just had the last infusion of a very, very aggressive, toxic chemo. So I have felt the worst — I’ve really had a very tough couple of weeks and it’s because it’s cumulative.
I did hit a point where I understand just how tough chemo can be on the body, but I can see the finish line. I feel like I’m coming back and I have all of December to build myself back up and then in January, I start radiation. It’s a Monday-Friday everyday commitment for six weeks.
Once that’s done, my prognosis is that I’m going to be cancer free.
This journey sure did give me an interesting new perspective on being cared for. Here are five things I learned:
1. It’s not easy to be on the other side of caregiving
I am the ultimate caregiver: I have seven kids and I’ve taken care of my mom, who had dementia, and my brother, who was ill as an adult. But I’ve never been put into a position where I have to accept the care myself. This is the first time ever and it’s really hard.
Every time I would have another chemo session and my daughters would say, “I’ll come with you mom, I’ll come with you and spend the day with you,” the first thing I would think of was they’ve got lives of their own. I felt guilty. I felt like I was an imposition on them.
It’s just been so strange. There’s uneasiness about it. I feel grateful and appreciative, of course, that they’re there with me but it’s mixed with a sense of reluctance.
When you are in charge of someone else’s care, it can get to be trying and create some resentment in you. But know that it’s not so easy for the person on the other end to have to be leaning on you so much.
I was always there whenever my mom needed anything and she used to be so incredibly appreciative, always saying thank you. I now understand why she was constantly saying that.
2. Kind gestures mean so much
If you know someone who’s going through chemotherapy or any kind of chronic illness and they’re doing this as single moms or on their own, cook a meal and take it over to them. It’s that kind of thing that means the most because there are days when you just don’t feel like getting up and cooking for yourself.
You don’t have to buy them a gift from the store, wrapped with a bow. Bake them something, make them something that will make their life a little easier and then just sit with them so they have someone to vent to a little bit.
This is that time of year when people who are alone feel even more alone. It’s a tough, so for anybody who is rolling their eyes, saying, “Oh man, we’ve got to spend time with grandma or grandpa” -- whoever it is -- I just say to them: If you only had any idea how much it means.
3. Start the caregiving conversation now
When you get together for the holidays this year, take out a video camera, sit your relatives down and start collecting an oral history of your family. Capture this while you can – while they still are able to, especially the older ones. I've come up with a list of questions you can ask.
Then you can say, what about the future? Let’s talk about the next couple of decades because people are living longer than they ever did before. How do you see the coming decades? Do you have a bucket list? If you come to a point where you feel like it’s too much living in your apartment or house, where would you like to live? You can sometimes really turn that corner and get them talking.
I’m not saying take a wonderful holiday time and turn it into something serious, but I am here to be the friendly nudge.
4. Watch for signs your loved ones need care
The holidays are the time when you visit relatives who you are going to be in charge of one day. It’s going to be at your doorstep.
Whenever I used to go visit my mom and my brother, I had blinders on. I would walk in and they would put on a good face – we’re fine, everything is fine here – which is exactly what I wanted to hear.
I would accept their “fine” and I wouldn’t look around, but there were tons of tell-tale signs. Here’s what to look for:
Go to the kitchen and be a food spy: Open up the refrigerator – is the food fresh? Does it appear as though they still have the will to get up and cook for themselves?
How do they look? Are they losing weight? Is the house in disarray?
Open up the cabinets, look at the dates: Is the food expired?
Is the mail piling up that they haven’t opened for weeks?
5. Keep being there for your loved one
At some point, we have to assume the role of the parent to our parents. That is just the most uncomfortable moment ever.
Caregivers have to have such a tremendous amount of patience and compassion. It’s so tough on them and it takes a huge toll on their own personal health.
But even when the person you care for gets to the point where you aren’t sure that they’re completely aware that you’re there, don’t stop going back. Keep going and just keep telling them you love them every time.
The people who were in charge of the care facility where my mom spent the last few years of her life told me that those being cared for do sense it, they do hear it.