Caregiver Stories
Spouse of Metastatic Cancer Patient

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Willie’s Story on Video

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Diagnosis

How did your wife get diagnosed

Originally, she was diagnosed with hyperparathyroidism. They did the surgery, and we thought it was all good. When you have hyperparathyroidism, it throws your hormones all out of whack.

This was during the time when she was going through the change as well, so it made it even more difficult to understand what the problem was. We went back to the doctor and they said yes, she’s dealing with hyperparathyroidism.

We scheduled surgery, and they removed one of the parathyroids, and we thought that after that was done, that would be it. We waited to see if that was going change anything for her.

It didn’t so they went back in and removed the other parathyroid because it had bulged up. Then we thought that was it. We thought it was going to be okay after that because they took both of them out. Well, that didn’t do it either.

Cancer

At that point, the doctor said she had another growth. We had surgery scheduled again, and when we went in to prep for the surgery, we discovered that the surgery had been cancelled, but nobody called us to tell us. 

Then we couldn’t get in touch with them for a month, and that bothered us. When we finally did get somebody to get in touch with us, he had talked to UCSF and got us in there.

Everything after that became a bigger issue because we then discovered what was hyperthyroidism was now thyroid cancer.

We talked to her doctor in person. That’s the thing I like about UCSF – they don’t beat around the bush. They tell you what to expect, and they tell you what to do. They don’t mind answering your questions, and they don’t mind looking into things for you.

Processing the cancer diagnosis

When they told us, it was a hard pill to swallow. We went home, sat down and started talking about the what if’s. We tried to get in a positive frame of mind because you’re in a negative place at that point. I told her not to worry and whatever happened we would deal with it.

I said, ‘I wish I could switch places with you.’

I’ve been through a lot already, so I don’t worry about it. I wanted her to have her health. She’s partially helped raise some of our grandkids, and now they’ve got kids, so she’s really loving her life.

What helped relieve some of the emotions

Sometimes when I start thinking about what she’s going through, it makes me a little verklempt. I deal with it, and I go for walks. I go to my room and let my emotions out because I don’t want to upset her.

The only time I let them out in front of her is when I see her frustration and anger, and then I have to remind her that she’s doing good because she’s still here.

When my kids say, ‘Dad, you need to get some rest too,’ I say, ‘I get my rest when I need to.’

When I’m away from her, I don’t sleep well because I’m wondering what’s going on. I’m there for her every second. That’s what I think I’m supposed to do.

When I hear people say, ‘It’s so nice that you’re there for her,’ I’m like, Huh?’ That’s what’s supposed to happen. Whether it’s your parents or your kids or your wife or your girlfriend – you’re supposed to be there. These are the moments that really count, so I’m there.

Being a Caregiver

How did you handle the balance of taking charge and still letting her make decisions for herself?

There is a balance. I take the driver’s seat because after she lost her voice, I became her voice. I became her decision maker – not without her input – but I became her voice.

I had to take the driver’s seat. I couldn’t get her to eat. I didn’t want to force her to do something she didn’t want to do. That actually makes her more stubborn.

She used to tell me about when she was a little girl sitting at the dining room table. Her aunt would bring in dinner, and it would be peas and greens and stuff like that, and she would just sit there.

She wouldn’t eat it. Her aunt would tell her, “You’re going to sit there until you eat.” Her uncle would come home later that night, and she’d still be sitting there at the table, so I know that’s how she is.

She can be really stubborn. I learned to deal with it over the years because she can be the sweetest person.

Was there ever a time when you two disagreed on treatment

If I’ve said, “You should do this,” she’s always done it. She knows that I’m a mechanical person, so when you describe something to me, I’m seeing how it’s working in my head.

It’s not so difficult for me to understand things. When they would suggest other treatments, I would try to understand them and try to help her understand them.

She was the one who made it possible for mothers to get up the day after having a baby (as a nurse). She’s super strong, so when someone comes up with a suggestion or solution, I think she should try it.

Because she’s never done some of the things that have been suggested, she doesn’t know how her body responds, so I always tell her to try it. If you don’t try, you’ve already failed.

Is it hard to learn everything you need to as a caregiver

They sent her home, and we were giving her fluids there because they didn’t want her to be at the hospital where she was more susceptible to getting sicker.

They sent us home and hired a home care nurse to teach me how to change her IV bags. It was a little intimidating at first, but I developed my own system, and we did it.

I learned how to manage the feeding tube in her stomach. I paid attention when they showed me how they feed her with it. I haven’t done it yet, but I know if push came to shove, I know I could because I know what I’m supposed to do.

That stuff doesn’t bother me. I know that the mind is a powerful thing. Somebody’s got to do it, so I get in there and do what has to be done. I’m the patriarch of our entire family.

What areas did you give her more support

More emotional and more peripheral, meaning she needs help managing her stoma and her lary tube. She can do it, but she’s not as thorough as I am. She has taken care of her stoma more than I have because I’m worried about hurting her.

I see the doctors go in and do stuff, and it looks like it hurts, but she just sits there. I take her lary tube off, and when it’s all globbed up, I’m the one that cleans that. She doesn’t even let the doctors do that anymore.

She doesn’t want anyone else cleaning it because they don’t clean it the way I clean it. I don’t want her to have anything get infected because we didn’t do something we were supposed to do.

Emotionally – that is the big one. She won’t tell me usually what she’s feeling emotionally, but her face is very expressive.

We share that quality. She’ll get to a point where I need to say, “Hey sweetie, what’s going on?” Then I’ll let one of the kids talk to her because she’ll tell them. She won’t tell me because she knows how intense I get about stuff.

She gets to where she’s having one of those days, and she starts in with the finalist talk. We had one of those days, and I told her, ‘It’s not over yet. It’s over when I look over there, and I don’t see you breathing anymore. Right now, every breath counts, and we’re going to keep you going. Don’t start talking like that.’

The doctors let us know about all this, so we could prepare, but I told her, ‘That’s not what we’re going to prepare for. We’re going to squeeze as much life out of you as we can before we say it’s time to put you in hospice or whatever else.’

Outside Support

How has your family helped you two through this

My middle son has been really helpful. My oldest son has been flying back and forth from Chicago to help, and it has been helpful.

It’s been helpful in a multitude of ways emotionally for her. She loves the boys, and we video chat every day. That helps her through. She has her moments where they do stuff to get on her bad side for a minute, but that’s just a mother and her kids.

They’ve been really supportive for both of us. They call me and never ask how their mom is without also asking how I am.

My granddaughter was the most emotional when it first happened. She came to town and was ready to take over everything. Then she asked me the most important question, “Well what do you want me to do?”

I said, “Be here. Come and be here. That’s what I want you do to.” There was silence after that. The visits are great, but if you really want to know what I want, be here. I need that support, so when I take breaks, I don’t have to worry.

Caring for Yourself

How do you take care of yourself emotionally through all of this

I just go with the flow of the day. If my mind says, ‘Do something nice for somebody,’ that’s what I do. That makes them feel better, and that makes me feel better. I just go with the flow.

Whatever my mind says is a good thing to do is what I do because at the end of the day, whatever I accomplish is what I accomplish. I try to make sure that every day, I do something.

Playing scratchers is a thing I like to do. It’s a little expensive, but it’s something I like to do because if I win, I feel good about winning. If I lose, I get to play second chance. There’s always a positive in it for me.

People say, “You’re wasting your money on that,” and I say, “Until I win.” You can’t win unless you play. It’s like when you go to Vegas to gamble, you know you’re going to Vegas to have a good time. If you’re going to do it, enjoy it and have fun.

Money has two purposes. It has a purpose for us to survive off of and to save. When we save it, if something happens to us before we get to spend it, it had no value to us at all.

Do you try to hold back your emotions for your wife’s sake

I never hold them back. When I get upset about something, I let the feelings out. Holding back just means you’re eventually going to explode.

That’s not good when you do that. It’s bad for you emotionally, mentally, and physically. It’s just bad to hold onto things until they boil over.

As a caregiver, what was the most difficult part during the process

The toughest time for us was when they came in and told her the cancer had metastasized to her lungs. The first thing that came to my mind was that metastasized meant it spread, so I wanted to know how bad.

I said, “In terms of stages, where are we at?” They said stage 4. She looked at me, and I looked at her, and it was silent for about ten minutes.

After that, I said, “So what’s next?” The doctors said they wanted to find out how to get us some support. I said, “How about we find some way to beat stage 4 because I don’t quit.”

They just said that whatever we wanted to do, we needed to do it and to make sure our family was aware. We said we were going to wait to tell our family because it was hard to talk to them about it.

My wife actually told our sons when I wasn’t there because she knew I would’ve gotten emotional. I don’t know if the boys got emotional when she told them because I wasn’t there, but I was okay with her telling them because that weighed heavy on me.

I knew they would be mad if something had happened to her, and I had known all along, so I was happy that she told them. I really hate keeping things from them, but I wanted to honor her wishes.

Guidance for Other Caregivers

Do you have any advice for secondary caregivers who want to help out

If you volunteer, just make sure you can be there. Be whatever they need you to be, but don’t force yourself into a situation because that can be really frustrating.

Don’t be critical of a situation. If you’re not there to do it, don’t talk about it. You can’t be critical of something you’re not experienced in. The other thing is, if you want to help, find a way to help from the outside if you can.

Maybe they need somebody to go to the store. When I leave her at home to go to the store, even though I’m five minutes away, I worry because in that five minutes, something could go wrong, and I wouldn’t be there. Those little things are really important.

If you want to offer help, make sure you can actually do it. It’s like when my granddaughter said, “What would you like me to do?” I said, “Be there,” and I knew she couldn’t.

I was letting her know that what she was proposing was not something that was real. She’s pursuing a career. Same thing with my middle son that’s been letting us live with him.

I’m super appreciative of the fact that we have a place to stay when we’re here. I know that they can’t be there with her all the time, so it makes it hard for me to leave her there.

You can just say, “Hey, you mind if I bring something by?”  You’d be surprised how much more that’s appreciated over than saying, “I’m coming over there, and I’m going to do this and that.”

I take that kind of stuff personally because it feels like you think I’m not doing what I’m supposed to be doing – even though that’s not your intention. It makes me feel that way as the person who’s there 24/7.

What’s your advice to someone who is just now starting to give care to their loved one

My advice to you is realize that the person that’s dealing with illness is not the only one dealing with the illness.

Understand that you’re not the ill person, but you’re the person that’s dealing with the side effects of the illness – the emotional effects of the illness.

You’re dealing with two. You’re dealing with your own and you’re dealing with the other person’s. That’s something.

You need to have your head on straight, and you have to be there 110%. You have to be thinking ahead. You have to be keeping those appointments and making sure that you’re not afraid of whatever is coming.

You have to be prepared for whatever medical attention you might have to provide because some of it is a little gross, but you have to learn to deal with it.

Make sure that you remind them that no matter what happens, they’re still the same person. Look at it as something you can’t change unless that person wants to change it.

Most cancer survivors survive it because they want to. Some of them get to a point where they just don’t have a choice but to let go. You have to be there for that, too.

Do you have a message for people reading this

I’m Willie Williams, and I was the caregiver for my wife Cozetta, and I just want to let you know that caregiving is not like being a parent and raising a kid. It’s like being a kid and raising a parent.

Meaning that you are now somebody that is dealing with something that you’ve never had to deal with. I’ve now become the voice for my wife. I’ve now become the person that takes care of her nutrition and takes care of her meds.

These were things that weren’t part of my normal life, and these are now things that are part of my normal life. As long as I need to do them, I’ll be doing them, and I’ll be doing them with a smile because that’s what I need to do.

It’s my job as a husband. It’s my job as a father. It’s my job as a human being, but mostly it’s my job as her partner. All I can say is, love the person that you’re taking care of.

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