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Dr. Jones: Caregiving, it's been called compassion in action. Sixty million Americans function as full or part-time caregivers for family members or people in their community. November is National Caregiver Month, and we honor those who, through love, loyalty, duty, or a combination of all three, give their heart, mind, and body to care for others. But how do caregivers care for themselves? This is Dr. Kirtly Jones from the Department of Obstetrics and Gynecology at Ï㽶ÊÓƵ of Utah Health Care. And today we're talking about the health of caregivers on The Scope.

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Dr. Jones: The economic value of informal and family caregiving in the U.S. is more than $300 billion a year, but there is also a cost to the caregivers. They've been called the invisible patient, in that their present in the doctor's office with the person for whom they care, but their responsibilities have a physical and mental cost. The risk factors associated with health problems and caregivers include, being a woman, the number hours of care provided, financial stress, cognitive impairment of the patient, a caregiver who lives with the patient, and a lack of choice in assuming the caregiver role. Today in the studio we're talking to a caregiver who is balancing her role as primary caregiver with her own health successfully, I might add. And I would like to welcome Kathleen to The Scope radio to talk about caregivers taking care of themselves. Welcome, Kathleen.

Kathleen: Thank you. I'm delighted to be here.

Dr. Jones: So help us understand a little bit about how long you've been the primary caregiver for a loved one in your home.

Kathleen: My husband was diagnosed with Alzheimer's about year after he retired. It's been nine years now that we've been dealing with this.

Dr. Jones: Did you plan for the long haul? Did you take it day-to-day, or a little bit of both? Did you think it was going to be this long?

Kathleen: No, I didn't think it was going to be this long. The prognosis, when you get it, is 3 to 20 years, and I looked in stunned shock at the doctor when he said that and he said, "But it won't be that long." I think probably because my husband was still considered early onset, because of his age. He was 63 at the time, but, no, I had figured really that he would probably be gone by now.

Dr. Jones: Some way, you've managed to stay alive cognitively intact, physically healthy. I mean, these are the things I'm assuming, but what have you learned over these years about taking care of yourself?

Kathleen: It's very, very important. There have been times when I thought I was doing fine and then suddenly realized that I really wasn't. What I do for myself is go hiking when I get a chance to. I belong to the book club, and I read voraciously. I read myself to sleep at night, partly because if I don't read before I go to bed my brain just starts thinking about all sorts of things. In this way, I can put myself in another world before I go to sleep. I indulge in chocolate as often as possible. I do volunteer work, and I'm lucky because I can still leave my husband home alone and I can take off and do volunteer work. I go to lunch with friends. At this point I can no longer take him to the theater or movies, so I go by myself.

Dr. Jones: In terms of his physical activities, can he dress and feed himself or is this something that you need to do for him?

Kathleen: He can still dress himself. If I don't put his clothes out for him, he will just put the same things on over and over again.

Dr. Jones: That sounds like me. That sounds like a great fashion idea.

Kathleen: But, yes, he can still dress himself, wash himself. Sometimes he needs a little encouragement, and he still eats by himself.

Dr. Jones: So you've been writing about your experiences. Is that helpful?

Kathleen: It has been extremely helpful. There's something about putting your thoughts in print that's very different from talking with someone casually, and you sort through your feelings and your emotions much more if you put it in print than you do when you're just speaking to someone. It's been extremely helpful for that. My goals with the blog were two-fold. Number one, to help me vent, but, number two, to help other people realize that we're all going through the same set of emotions at various times, and it's been very helpful.

Dr. Jones: I've certainly heard about writing as an exercise for people with PTSD and depression, but this is the first time I have actually thought of writing as a therapeutic choice for people who are locked in or choose to lock themselves into a caregiver role.

Kathleen: It's been extremely helpful. I noticed a change within the first few months in my feelings just because I had put them down and posted the blog. It was a very different feeling, so it's been extremely helpful.

Dr. Jones: Well, you mentioned talking to others. Can you expand on that little bit?

Kathleen: Yes. As I let friends know that my husband had Alzheimer's, I found other people out there who did. I mean, almost everybody knows someone, either in their direct family or a close friend, who has this disease or has some form of dementia. In my volunteer work I found several people who do, and we would start talking to each other. As we spoke together, we realized that we're going through some of the same things, different times maybe. This is a weird disease because everybody's a little bit different, but emotional horror is the same for all of us, and it helps.

Dr. Jones: You used the words "emotional horror." That's a strong word. I can see the use for writing. That's not something that you can just tell your children or tell someone casually, but that's a powerful sense that you might actually be able to write down or you can say in a small group of other caregivers.

Kathleen: Yes, and I do belong to a support group also for dementia.

Dr. Jones: What about respite care? Right now you can go for a walk and so keeping yourself physically fit and being able to go outside is really important. Sunshine on your face is critical, but what about respite care, if you need to go away longer than just a couple of hours?

Kathleen: There are facilities in the community where you can take whoever you're caring for, whether it's a spouse, a parent, whatever. You can leave them for a few hours or all day. Some people have insurance that will cover total expenses for that. The general cost, I think, is about $50 a day for those who don't have insurance that covers it. Its $50, that's a lot of money, but it beats a psychiatrist or the hospital bills if you succumb to caregiver-itis.

Dr. Jones: Right. What kind of ideas would you share? What do you think would help others?

Kathleen: The first thing is that I absolutely cannot dwell on this disease all the time. I would go completely bonkers if I did. You're in limbo for between 3 and 20 years, so you just cannot focus on the disease itself. So I locked that into a back corner of my mind and shut the door and go on with doing things I enjoy doing, which we've already discussed, chocolate being one of the most wonderful ones, chocolate, hiking, and getting together with friends.
The second, is guilt. So many people in my support group have said, "Well, I don't feel like I should take off by myself and go do something that's just for me because then I'm leaving my husband there by himself and I feel guilty about that." I lost the guilt bug a long, long time ago. You absolutely have to get out there and do things that are just for you that make you feel good, that you enjoy or you're not going to survive to take care of him. That's what you should feel guilty about.
I left my husband in respite care for a week recently and started to feel a little bit guilty as I was driving away, in spite of what I've just said. I turned on NPR and Diane Rehm was on, and she had someone from the Alzheimer's Association on who, as I turned it on, was saying Alzheimer's caregivers are six times more likely than the general public to develop Alzheimer's themselves because of the stress. I thought, "Okay, Kathleen, pat yourself on the back. You need this. You have to get out and go," and I did.

Dr. Jones: Well, you've really wrapped it up very nicely in a sense that, exercise, keeping yourself cognitively active, volunteering in another non-caregiving way, and chocolate. Great. So we are all caregivers to some degree or another, and, as I've been told, you cannot pull water from an empty well, so caregivers need to care for themselves. You mentioned that at this point you can leave your husband at home.

Kathleen: Yes.

Dr. Jones: The time may come when you can't do that.

Kathleen: Right.

Dr. Jones: Do you have plans for that, or are you just going to wait till that happens?

Kathleen: I'm peripherally aware of what's out there to use. The first thing that I will do when that happens is to take him to one of the places where you can leave them for a day for a few hours or all day so that I can escape and just do whatever I want to for that day. The second thing, which I'm already pursuing somewhat, I mentioned leaving him in respite care for a week, that, I think, is going to be a very good alternative to full-time care because it will allow me to escape completely for a week without the horrendous expense of full-time care. That would be my number two option. My two criteria for leaving him in full-time care would be if he gets violent or if he gets to the point where he needs physical help that I'm unable to give, if I have to lift him or something like that, that would be impossible. So those two things are my criteria.

Dr. Jones: Well, when I mentioned that Americans provide over $300 billion of care, if they had to have that care in a facility or have someone else hired to provide that care, that's what it would end up having cost. Full-time nursing home care for people who are at the end of their cognitive life is enormously expensive.

Kathleen: It is. At this point, it's the best-paying job I've ever had, and I don't see the cash but at least it's not going out.

Dr. Jones: That's a great way to put it.

Kathleen: Full-time care is anywhere from $6,000 to $8,000 a month. Medications would be extra.

Dr. Jones: Right, so it is very expensive.

Kathleen: It's very, very expensive.

Dr. Jones: Right. I tell people, from my own experience, once you add medications and doctor's visits it ends up being almost $100,000 a year.

Kathleen: Oh, yes.

Dr. Jones: $8,000 a month times 12 is 96.

Kathleen: Yeah.

Dr. Jones: So that's something that most people don't have insurance for.

Kathleen: Right.

Dr. Jones: Did you and your husband ever talk about long-term care insurance?

Kathleen: Long-term care insurance hadn't been around very long before he was diagnosed, and once he's diagnosed you can't get it.

Dr. Jones: Right.

Kathleen: So we talked about it briefly and then decided no. We had been in good health. Our parents had been in good health. We never anticipated this.

Dr. Jones: Well, that's a conversation that most of us don't want to have, but the realities are, with people living as long as we do, which is a blessing in so many ways, the fact that we may live beyond our cognitive capacities means that one out of three of us are going to spend time in some kind of health care facility.

Kathleen: Yes.

Dr. Jones: This is for younger people who can get long-term health insurance when it's still affordable.

Kathleen: Right.

Dr. Jones: But we never think it's going to be us.

Kathleen: Oh, you don't. Before you retire you never consider something like that.

Dr. Jones: Right. Well, as an aging nation, this is something we're going to have to pay attention to. As a member of the agers, I'm a Boomer, I want to live a long and productive life and I don't want to be a burden, but it's something that we as a nation are going to have to think about how we take care of our caretakers.

Kathleen: Yes.

Dr. Jones: What do you think is the most challenging thing in your role as a caregiver?

Kathleen: At this point in his development with the disease he's in stage six, out of the seven stages. I think the biggest challenge for me is that I get so terribly lonely. He has lost the ability to converse. He says three or four phrases over and over again, and I have to try to interpret those in context and sometimes that's impossible. He understands virtually nothing that I say, so I have no one to talk to and share with when we're at home together.

Dr. Jones: That's heartbreaking.

Kathleen: It is. It's very difficult. We've been married for 49 years, and I've lost the companion that I anticipated having. Now, that being said, I'm not going to do the pity party. I have friends and I have children that I talk to regularly and visit with regularly.

Dr. Jones: But the nights are long.

Kathleen: It's really hard.

Dr. Jones: Is it a challenge to care for someone for whom you now have to take care of?

Kathleen: Sometimes it really is. I know people who have said they just delighted in taking care of their spouse and were glad to do everything they could for them. I haven't been able to find the enjoyment in it. It gets very difficult. You're in limbo. You have no idea how long you're going to be doing this, and there are times when I just get frustrated and I resent being in this position.

Dr. Jones: And the person you are caring for is not the person that you fell in love with, that you raised your children with, that you had a career with, that you retired with.

Kathleen: No. My husband vanished many years ago, so I am taking care of a large two-year-old.

Dr. Jones: The National Family Caregiver support program, which is part of the National Administration on Aging, has a website that can direct you to ideas and local support. However, for all listeners, this Thanksgiving is the time to especially thank those who are providing compassion in action as caregivers. Thank you for joining us.

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