Now to health care at home, those who are full time caregivers for their elderly parents or others being ready for the unexpected emotions that come with caregiving can make the journey a little easier.

Our Christine sat down with a psychologist who specializes in aging and dementia about common emotional challenges.

Caregivers face, and offer some practical advice for those navigating these feelings with strength and compassion.

Doctor Benjamin Marsh joins us.

You are a professor at University of Louisville in psychological and brain science, and you have worked with caregivers for decades now, your entire career.

So we're talking about the caregiver and care recipient relationship.

A lot of times that's caring for a spouse or caring for a parent or grandparent.

How do you often see that relationship evolve over time?

Yeah, it's a it's an interesting change in the relationship, right?

Because you have this existing long term relationship, whether a parent or a spouse.

And the thing that's tricky about it is no one tells you in advance that you're going to become a caregiver.

It just sort of slowly happens over time and you find yourself taking on things that the person used to be able to do for themselves very easily, and maybe managing money or medications, or even just keeping them safe in the home.

And so you get a mix in this relationship.

You have the old part, and then you have this new piece that comes in and it really starts to make a shift in those relationships.

Yeah.

And for people caring for an aging parent, that is a bit of a role reversal.

How do you see those caregivers coping with this new role, this new identity?

Yeah, I think that's a good way to put it.

It is a role reversal.

These are people who took care of you, who were responsible for you for many years, and then you had this transition period where you're on your own, and then slowly you find yourself having to take, take on the care of them, maybe making decisions for them.

Again.

No one tells you in advance you're going to be doing this.

And so a lot of times people wonder, am I doing too much?

Am I doing too little?

You know, how much for free freedom should I be restricting?

How much should I let them continue to choose?

It can be really disorienting for them.

Yeah.

It becomes parenting your parents sometimes.

And then when for those caring for a spouse, how does that relationship evolve?

What are some of the emotions that have to be dealt with in that arrangement?

Yeah.

So there's a little bit different, sort of feel to it when it's a spouse.

Right.

So you're sharing life together in the same home typically.

And again, you're having to take on things that they used to be able to do for themselves.

And what can be really acute in this type of situation is that, there is a lot of fear, there can be a lot of sadness, you know, fear about what does this mean?

What does this mean for our future?

Sadness about the changes that the person is experiencing.

And what we sometimes see is even that, maybe once a diagnosis happens, maybe a diagnosis of Alzheimer's or another dementia, that, people start to grieve even while the person is still living, grieving losses they've already seen.

Maybe they had plans to retire together and do certain things, travel, and maybe they feel like they can't do those things anymore.

And they start to grieve that loss.

And they also grieve things that they see coming down the road.

Okay.

And you call this pre death grieving.

Yeah, I'm sure a lot of caregivers feel this and they don't know the word for it.

So it's so keep on describing that a little bit.

Yeah.

So what you're seeing in pre death grief is different than the usual way we think about grief is when there is a lot of sadness and loss after the person has passed away.

And what we see in dementia caregiving and other terminal illness is that families begin the grieving process even while the person is still living.

And a lot of times I hear from caregivers, once the person they're caring for has passed, that grief feels different than they might have expected.

Yeah, so what some people experience and there's good research to support this, as well as when people have been grieving throughout the caregiving experience.

Sometimes when the actual passing of the person happens, they don't feel the same level of grief as they expect it to.

Caregiving can be really hard.

And, sometimes people feel a sense of relief that that part of their journey together, is finished.

And that can prompt a whole new set of emotions, you know, guilt.

Why do I feel relieved when I've just lost my loved one?

But they've been on this very difficult journey, and they again, they've been grieving for a long time.

And some of those people will actually experience less intense, negative emotions once the person actually passes away.

Okay.

For caregivers, where do they go who can help them kind of navigate these emotions they may feel?

Yeah, it's a great question.

I think there are, informal means and formal means.

I think the biggest thing that I see is that family caregivers, tend to be more isolated.

Right?

They might be overwhelmed by the tasks of caregiving.

They don't feel like they can leave the person alone.

Some of them feel, ashamed about the situation.

They don't want to tell other people.

So for those people, what I encourage is really just finding one person that you can trust to start sharing what's going on so you don't feel so alone.

You don't feel so isolated.

On the formal side, you can reach out to different organizations in the community.

Maybe a counselor.

Certainly the Alzheimer's Association, Trager center with you of.

Well.

There's plenty of places where you can get support on the caregiving journey.

The point is to find some sort of outlet to share what's going on.

So you're not so alone and isolated.

And that can sometimes lead to both emotional support and physical support, helping with the person, maybe some respite care and taking some time so that you can get out and doing the things that you need to do.

Yes, because both are very important.

Absolutely.

Doctor mass, thank you so much for all the work you do, and thank you for your time today.

Thank you.

And thank you, Christine.

You can learn more about the cost strategies and support services for Care Caregivers and our special report, the Caregiving Experience that you can Watch online on demand@ksat.org.