Peace of Mind for Pet Parents Episode 050: The Weight of Caregiving: When Love Meets Uncertainty

Episode Transcript: 

Karen Wylie: Hello and welcome back to Peace of Mind for Pet Parents. I'm Karen Wylie here as always with Gail Pope. Today we're going to address a couple questions that came out of Gail's presentation last week with the New York State Bar Association because several of them were coming across as not separate questions at all but really dealing with the difficulty we all have when we step into a caregiving responsibility with our pets and the caregiving along the way starts to feel heavy.

We don't really have a language for that and don't seem to have a whole lot of support for that either. Yet we're still in a situation where we have a lot of end of life decisions to make. And when I say end of life I don't necessarily mean euthanasia but if we have a pet that is terminally ill and is on track to decline over time, there are various decisions we need to make.

They become difficult because they're highly emotional, and they require a lot of thought. Certainly as veterinary costs increase, the decisions we make have financial implications. So what seems to make this timeframe very difficult for us as caregivers is that we have to learn to live with uncertainty. There's always a part of us that wants to fix everything and make it all better. So Gail, what do you think about, what I've just described? When you think about caregivers that you've supported over a very long period of time, what do you notice when someone is struggling but may not even know how to describe to you what's going on with them?

Gail Pope: I think it's something that happens to all of us. Maybe it all comes back down to education. It's what we don't know and what we don't understand. I think most of us; I know I always thought of caregiving as more of a nurse situation, "I'm caring for this person. I'm helping them to eat and drink and be comfortable." That's caregiving.

I didn't, in my mind growing up or being an adult, really look at all the other parts to it until I looked back on the life that I was leading with BrightHaven and realized that, "Oh my goodness, there are lots of different hats that I'm wearing here."

I think many of these kinds of silly sayings and things that I'm well known for: "Be kind to yourself. Take baby steps." - All of those things have come out of trying to bring it all together and to have people understand what a big job they've taken on.

Karen Wylie: They feel the pressure and they feel the love that they have for their pet.

Gail Pope: Yes.

Karen Wylie: But it is difficult sometimes to find the words, I think, to describe how you're feeling about the process of taking care of your pet in a terminal illness kind of situation. I know, thinking back to my own experiences with my own pets, it's almost where you feel ashamed that you're not coping with it all perfectly. Who are you going to talk to about this kind of stuff? You take your pet to the veterinarian who maybe wants to run blood work every few months or every couple weeks as things get a little worse. But they're not there to support you, they're there to support your pet.

So you focus on that in the 10 minutes that you probably have…but where can people get support for this process? This is one of the reasons of course we created BCA, so that there is a place for pet parents who become caregivers to receive some support. There's a lot of free resources that we have available. But if someone doesn't find us and they're out there somewhere, where can you suggest they look for support for the kinds of feelings that they have? It's hard for me to think other than the veterinary clinic where they might be a receptive person or someone who will understand the language and the feelings that they're having.

Gail Pope: I know, obviously friends, neighbors, family all spring to mind. However, some of those people in those categories aren't on the same wavelength with their love of animals. So that can sometimes be difficult. 

Very obviously I have to suggest our "Cuppa" which happens every Thursday morning.

A place like that, wow, almost a year ago now we started it for members of our community, people who were interested to come along and chat about anything that came up. I don't think we really thought what a lifeline it could be for the attendees - as well as us. People now don't necessarily come to talk to you or me. They talk to each other. Oh, it made me go goosey! 

That's where the bond has grown and people know it's a safe place to just come and talk to other people who really understand what they may be going through or the joys, the tribulations, the lack of sleep, the worry, the crying.

There are so many little things that in daily life we swallow down and we get on with the job. But having someone to share that with and to laugh about quite often because a trouble shared is a trouble halved. I think that's true. It works.

Karen Wylie: I think you're right. Any support that a pet parent is going to feel— whether it's coming to the "Cuppas" or finding support with someone in their family, is that support doesn't start with answers. Support starts with sharing how you feel.

Gail Pope: Being present.

Karen Wylie: Being present.

Gail Pope: For each other. And I think that actually underscores it more because when you are struggling and you talk with other people who also may be struggling, a trouble shared becomes a trouble halved. It releases some of the anguish that you are feeling, realizing you're not alone.

Karen Wylie: Right.

Gail Pope: And that others are doing the same thing and feeling those same emotions. It's not just about how you are feeling it, it's okay and it is normal. Let's laugh together and let's cry together.

Karen Wylie: Because there's going to be both. There's going to be aspects of a terminal illness situation that require you to do both— you are going to cry, you can laugh. Little aspects of it along the way help too.

Gail Pope: Exactly. I don't know why this kind of silly thing would come to my mind. You may be in a situation where your animals just had diarrhea on a perfectly clean bed that you just prepared. You take the incontinence pads away, you settle everything down, it's all clean and tidy and then he does it again! Those kinds of things, you can end up laughing or you can end up crying. When you have people to share and they say, "Oh my God, do you know that happened to me as well?"

And you end up like, it's just lovely. It's companionship and understanding.

Karen Wylie: I think you're right. I think that's a huge aspect of what most pet parents don't have when they're in a caregiving situation. It's because they're trying to cope but they're coping in isolation and that's a really hard road.

Gail Pope: And again, it parallels the human world of hospice. So many caregivers are at home with mom, dad, aunt, uncle, child, and they're bearing that same burden as well. It's tough. It is like we need to go to school and graduate to learn how to be one.

Karen Wylie: Rather than the school of hard knocks which is how you learned and how I learned. There comes a point in caregiving for our pets that we do not need more opinions or to be consulting Dr. Google every night. What we really need is more places where we can speak honestly about how we feel without every conversation needing to go toward a decision that we're supposed to be making. To just feel, to just express it and sit with that with someone who understands or a group that understands as you were mentioning— our Cuppa. 

Gail, at what point do you see caregivers questioning themselves? Not their decisions necessarily but their worth as caregivers? Do they have a sense of themselves as caregivers, as doing everything that's needed or…?

Gail Pope: I don't think I ever did. I think mine— it's more of a motherly feeling. I think it's inbred into us, isn't it? I think the term caregiver is perhaps a more modern term but as mothers and in the old fashioned days, we just cared for the people we loved. Whether they were children or adults or great grandma. It was just loving them and being there for them.

We became exhausted. We had all the same problems and we didn't necessarily have all the answers. I think these days we are lucky, we do have more people in places to go to ask for help. I think the end of life situation for animals is starting to grow and it still needs more growth.

Karen Wylie: Because one of the luxuries in supporting humans at the end of life is that most of them can still tell us what they want and how they feel and what they don't want. That's a luxury we don't have with our pets in the same way. We have to attend to understanding their perspective and what they would want, what they're trying to do.

Gail Pope: I don't know. I think over the years I've learned that most cats and dogs particularly have a very easy way of letting me know what they don't want.

Karen Wylie: How would they show that? Are we back on the bed again?

Gail Pope: Could be as simple as a *hiss*.

Karen Wylie: There is that subtle sign! Oh goodness. These days too, I think in this process of moving toward the end of life, wherever you are with your pet, the financial pressures are a bigger variable than they used to be. Just because veterinary costs have been practically up 60% in the last six or eight years.

It's definitely going up and there can come a point where you realize you just don't have the financial resources to approve the treatment that's suggested. So how do you think caregivers are going to cope with that? How are they going to show up with that in terms of going silent or are they going to ask certain questions or what do you think is going on for them that we could help them cope with?

Gail Pope: We're coming back down to education. We're also coming back to belief. We're also coming back to the kind of care, the kind of healthcare that you choose— whether it be holistic or conventional. Then I guess we come straight into the world of hospice and what that means and when you actually accept that spending a lot more money on this test or that test is not going to get you different answers. Then the process changes and it becomes less expensive but it's very hard for people most often to actually reach the point where they are willing to let go and actually accept “letting go and acceptance”.

Then moving forward and finding that it can be a beautiful place. When you accept that the animal is still living and you're concentrating on living because we don't know when dying actually is going to start, or come. So we live in the world with them while they're alive and approaching the end of life and making each day be the best it can be. As part of that equation, you don't necessarily have to spend an awful lot of money.

Again, it depends on the chronic illness, what that was and what kind of care you choose to give. It could be more difficult because if you have a full-time job and you can't take your animal to work with you, et cetera, et cetera, et cetera, then you know, sometimes you can't do it. You just cannot do what you might want to do.

Karen Wylie: And I think this is an area of care that's also difficult for our veterinarians because they've been basically trained in how to treat and fix. If those don't work, then there's euthanasia and yet we often talk about hospice being that middle ground. So many pet parents don't hear about the possibility of hospice care as a way to approach end of life that can take weeks, months, or years.

Gail Pope: I think that for me underscores the beauty of choosing a veterinarian who sits on both sides of the fence, who's an integrative prescriber, who can balance the caregiving as the animal moves towards the end of life. In the human world, hospice is holistic. I think it's an open umbrella. Whatever works is what you're going to do for the best quality of life.

Karen Wylie: And hospice care, as you're saying, doesn't require a lot of money because if you're not pursuing additional treatments to cure or fix. Then you know, it's a very different approach.

Gail Pope: Yes, it is. It's all about the journey you choose. You could do it very inexpensively but again, if you work with private practitioners who aren't trained veterinarians, but are trained in other avenues, again the cost can start to mount up. So I think it's just stepping back from where you are and evaluating what you can do and doing your best with love in baby steps. That same old thing all over again.

Karen Wylie: But it's all true and hospice is filled with days and weeks of baby steps. Physiological decline, it can be sudden but in a hospice situation, it usually is slow.

Gail Pope: I think the stress for the caregiver is really important to address. As the caregiver. I say, and I say it frivolously, do your best with love and tell yourself that. We laugh and we say, "Yes, I'm doing my best and of course I love him a lot."

However, if you sit down with that and actually think about it and honor yourself for doing what is the best you can do. It's straight from the heart and it helps you feel so much better about the journey. Your animal would want nothing more than for you to do your best.

Karen Wylie: Most end of life decisions for our pets aren't certainly driven by a lack of love. They're driven by fear or uncertainty because ‘not knowing’ is such a difficult place to be. The fact that there is a lack of support for that middle ground for hospice and finding a place where talking about the love you feel and the grief you feel and coping with that gradual physical decline. That is very difficult to watch. You can talk about all of that.

I do think as you were saying, so many caregivers seem to make their way through these end of life processes and somehow end up believing that they failed in some way, that they let their pet down in some way. That's where you continue to remind us all that you've done your best and you've done it with love, that's all our pets would ever expect of us. I think that love that we've always given to them and we do need to spare a little or share, put a little to the side and give it back to ourselves.

Gail Pope: Exactly.

Karen Wylie: I think that as we're concluding here, my biggest observation is helping pet parents have that language, more of a vocabulary to talk about how they're feeling in what is going to be a process that may be a long process.

Gail Pope: Yes. Oh, yes.

Karen Wylie: And to find the places that they can receive support with people who can understand both crying and laughing. Hopefully they'll check out our weekly Cuppa which you can read all about on BrightPathForPets.com and we'd love to have you join us.

Gail Pope: Absolutely.

Karen Wylie: We will finish up for this episode and hope you will return with us next week. Thank you. Bye-bye.

Gail Pope: Goodbye. Thank you so much.