Chat Transcripts

Good evening everyone. As you know, the Multiple Sclerosis Foundation has designated the month of March as national MS education and awareness month. And we are delighted to have you with us this evening for Caring for the Caregiver.

Our guest this evening is Laura Zel. Laura is a licensed clinical social worker and is currently a caregiver counselor for the Just Checking Medical Case Management Agency. Her responsibilities include providing one-on-one in-home counseling, support group, training, education and outreach to family caregivers in a four county area in South Florida.

Ms. Zel has been working in the field of geriatrics for the past 12 years as a nursing home admissions coordinator, case manager and in a state funded memory disorder center. She has presented at numerous professional conferences, including the National Association of Social Workers Florida State conference. I had the pleasure of meeting Laura at the Fearless Caregiver conference this year in West Palm Beach and I'd like to turn it over to Laura.

Thank you, Chris.

You're welcome.

Good evening everybody and thank you for taking time out to listen to me tonight. I really wanted to start with a quote from a book by Rosalind Carter. Her book is called Helping Yourself Help Others. And she begins with a quote. She doesn't take credit for it herself but she heard someone else say it. "There are only four kinds of people in this world, those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

So that pretty much covers all of us. And in my opinion, care giving is one of the hardest jobs in the world. You didn't apply for it. You weren't trained for it. And let's face it, the pay is lousy. Having said that, I hope that you all are finding the places and instances when the payoff is actually pretty good. But the most important thing to remember is that you must first take care of yourself before you can take care of anyone else.

And I know this is easier said than done. In my experience of working with caregivers there are about ten of my working years you are the most selfless people in the world, so I know telling you to take care of yourselves because you deserve it or because it's the right thing to do is pointless.

So I'm going to tell you to take care of yourselves because if you get sick, you cannot take care of your loved one and there will be no one to take care of you. And put it this way, if you think of yourselves as automobiles then you know it takes fuel and oil changes and even an occasional tune-up in order to keep running smoothly or else you will break down by the proverbial side of the road.

Very often when I speak to groups of caregivers in person I ask for a show of hands and I guess this really isn't going to work on the phone. If you want to raise your hand alone in your living room that's up to you. I asked how many caregivers have ever missed or canceled a medical appointment for the person that they're caring for and usually not a hand goes up.

And then I ask how many of you have missed or cancelled your own appointments and about half the room responds? That speaks volumes. I've actually had caregivers tell me that if they don't go to the doctor then they can't tell them that they are sick. Guess what? If you're sick you do not need the doctor to tell you.

Not knowing is not going to make it go away. In fact, going to the doctor is the only thing that possibly will. Now I don't want to depress you but I do want to shock you a little or maybe a lot with a very extreme but true example from my practice as a caregiver counselor.

My client's husband actually had MS so it's a very appropriate example. After he passed away my client shared with her daughter that she had felt a lump in her breast. Sadly by the time she got to the doctor herself, the cancer had spread throughout her body and she died soon after her husband. That didn't have to happen, if she had just thought of herself and her needs as being as important, if not more than her husband.

So here are some of the things to keep in mind to keep - to take care of yourself physically. Keep your doctor's appointments. Have all of your appropriate annual screenings and exams. Refill your prescriptions as needed. Take medications as directed and only as directly. Exercise. And everybody says well yeah like when.

Sometimes just walking around your house or going along with a video or a DVD really can be a great form of exercise without ever leaving your house. Eat right and watch your nutrition. Take vitamins. Limit your alcohol intake. Drink plenty of water. Watch your back and I mean that literally – when stretching or lifting. Listen to your body. If you're tired, lay down. Don't overdo it because it will come back to haunt you.

Get plenty of rest. Now I know that's another easier said than done. But if you're up at night then take naps during the day. Take the opportunity when your loved one is sleeping that you should get your rest as well. Okay so that's easy, right. Oh, I know it's not.

But I hope this gives a better idea of why it's so crucial. So now that you know how to take care of yourselves physically, I want to talk to you about other ways to take care of yourselves. It's important to find balance in your life. It's so easy to be all consumed in caring for your loved one that your life gets put on hold. And that's not anymore okay than not going to the doctor.

You have to take some time for yourself. If your loved one cannot be left alone then seek out a resource for respite care. Respite is a relief for somebody to be in your place when you can't be there. And Chris Ratliff has informed me that the MS Foundation has a home care program that can help you find respites so contact your local chapter.

And if you're caring for somebody age 60 or older you can call the elder locater number and that number is 1-800-677-1116 and that will connect you with your local resource, your local elder helpline or area agency on aging. And most cities at this point have 211 as a direct line into that elder helpline, just like 411 for information, 211 will connect you with resources.

Laura, just for one moment let me interject. The MSF does have a temporary home care program that can help people find respite. We don't have local chapters.

Oh sorry

We only have the one national location. That's okay. And the phone number for that is 888-MSFOCUS. That's 888-673-6287. And as Laura said, we can also be a resource for helping you to find respite.

Great, thank you.

You're welcome.

So when I say respite that might be in your home, somebody coming to your house while you go out. Or a lot of facilities, nursing homes and assisted living. If they have empty beds and they have enough staff to cover the ratio they can take care of somebody for a day at a time or several days at a time.

There's also, in most communities, adult daycare centers. And all of these services can be paid for privately and sometimes there's funding available that can be sliding scale or discounted cost according to your income and asset level. Also keep in mind if you have got - if you were smart and had the foresight to get long-term care insurance before your loved one became ill, many of those policies cover respite care. And even if it costs you money it is so worth it. No one can do this job 24/7/365. You need a break.

And guess what? When you come back from your break whether it was for hours or for days, you will be a better, more refreshed caregiver. And your loved one, frankly, has gotten a break from you too. If you take advantage of the options to get him or her out of the house they also benefit from the social and intellectual stimulation that might be lacking when they're isolated at home. It's a win-win.

And when I say get rested I don't mean use that time to go to the grocery store. I hear that so often. I want you to use that time for you. Be creative. Think of things you used to do and enjoy. Go get a massage, have your nails done, have lunch with a friend, reconnect with people that maybe you've lost touch with. Take a walk in a park or on the beach. Drive golf balls. Get an ice cream. Go to a museum. I think you've got the picture.

Something else that is unfortunately rampant among caregivers and I'm not going to bore you with the actual statistics because they're up for grabs whether, you know, what the numbers are. It doesn't matter. The problem is that depression is very often present.

Laura.

Uh huh.

Excuse me. Before we go on to that topic of depression, do we want to see if anyone has any questions on the respite?

Absolutely.

Wade, is there anyone that would like to ask a question in the audience?

Ladies and gentlemen, at this time I would like to remind everyone in order to ask a question please press star then the number 1 on your telephone keypad.

All right, we'll go on to the depression and if anyone has a question about respite you can go ahead and call in…

Yes please.

And we’ll be happy to answer it for you.

Gladly. So yeah I know it's not a great topic to go on to but it's so important because people just think that's just how it is and don't realize that it's actually a disease that can be treated.

So the first thing I want to do is read you a list of the signs of depression and if you sit there clicking these off in your head then keep listening very closely -- sadness or crying, loss of interest in things you used to enjoy, difficulty making decisions, a lack of energy, restlessness and irritability, a change in appetite or weight and that includes losing weight without trying to or eating all the time or not feeling like eating at all, sleep changes, being tired all the time, sleeping all the time or not being able to sleep at all.

Very often people with depression will start by falling asleep right away and wake up frequently during the night without any cause and of course suicidal thoughts. If there's any concerns, any thoughts that you might hurt yourself that's a serious flag.

If you have more than three of these symptoms and they're not caused by another medical problem, please see your doctor immediately. Yes you have a situation that makes you sad. But clinical depression, as I said, it is a disease and it is a treatable disease. You deserve to be treated. And you must be treated if you are going to continue as a caregiver because you will be on a straight path to burnout if you really don't interrupt that cycle. If somebody…

That's a very good point, Laura, that you make that yes the situation is sad. I think some caregivers don't realize that even though the situation is sad that the symptoms of depression are different.

Right.

So that's an important point.

Right. That's why I really wanted to read the list of what the definition of clinical depression because yes, you know, it's okay to tear up here and there and to be tired every once in a while. But if it's happening more often than not, you really need to take a serious look at it.

Some of the other things you can do for yourself that just can kind of keep you cheered up, keep your support system solid, certainly what I do, caregiver counseling. That is available through the National Family Caregiver Support Program. Anybody who is caring for somebody 60 or over is eligible for this.

It's a free service in most areas and you can access it through 211 or that elder locater number I gave earlier. And it's like in my situation I come to people's homes so that they don't have to worry about respite at that time and just let them talk, sometimes once a week, sometimes once a month, sometimes just once to get them on the right path.

Laura, I'm sorry to interrupt. When I met you, you were the first caregiver counselor I had ever met, someone with that title. How common - I mean is it easy to find a caregiver counselor?

Well the funding comes through the federal government to the state governments and then to the local area agencies on aging or whatever they might be called in that area. And that funding is distributed in different ways. Counseling is one of the programs that is supposed to be provided. I guess I can't make, you know, I can't promise that it's going on in every little town all over the country. But very often it's subcontracted, maybe through social service agencies, such as the one I work for now, Just Checking, or the Councils on Aging and whatnot so it might be…

So a person could contact one of those organizations and say that they were seeking a caregiver counselor.

Yes.

Okay.

Yes. You know, and sometimes the funding is given to fund conferences such as the one where we met at Fearless Caregiver or to pay for people to attend those conferences. But the one-on-one counseling falls under the category. Again, I can't tell you for sure if it is offered in any area but it's certainly worth asking.

Thank you.

Another source of counseling if you are involved with any kind of church, synagogue or house of worship very often your spiritual leader is available for counseling. Friends and family can be supportive. And some of the things you can do for yourself if setting limits. Don't overdo it. Don't have such unrealistic expectations that you can never possibly meet your goals. You're never going to be the perfect caregiver. Doing your best is what you have to do.

Keep your sense of humor about things. Again and I know it's easier said than done but the happiest caregivers I come across are the ones that are still laughing with the person they're taking care of and even as that person might be fading away through a degenerative disease that little bit that they still have where they can laugh together really keeps them going strong.

And I know this is a favorite of Chris and also it's a favorite mine, join a support group. I can't say enough about this. Only in a support group can you find others going through exactly what you are experiencing. Often they have already survived the crisis you're in and can give you their wisdom without you having to go through it and figure it out by yourself. A lot of these group settings are in facilities where there is respite available so you can bring your loved one.

If you're computer savvy, there are online groups and bulletin boards, if you can't leave the house. I didn't come prepared with a list of them but I've done searches just asking for caregiver support, caregiver support groups. And you get sent to some wonderful websites. Again some of your local resources for this might be your local hospitals, hospice and again that elder helpline.

And MSF also has access to lists of support groups that are available for caregivers.

Excellent.
Do you want to stop again and see if anyone any questions?

Wade?

Once again, ladies and gentlemen, if you would like to ask a question please press star then the number 1. And we do have a question from Jane from Youngstown, Ohio.

Great. Hi, Jane. How are you?

Fine, thank you.

Good.

I was wondering, my girlfriend has been taking the Avonex and she was inquiring to be (unintelligible) the score in many ways and what can I do that would help that, anything at all?

Are you saying that she's taking Avonex?

Yeah.

And it's making her depressed.

Well I think she was depressed to begin with.

Do you feel that maybe it's made her a little bit worse?

Well she's been taking it for a couple of weeks so I'm not sure but it might be and I’m just kind of watching.

Laura, what do you suggest?

I'm assuming that's a medication for MS.

Yes.

Yes.

Okay. Well, you know, I don't know that much about that medication. There certainly are medications whose side effect might be depressed mode or causing depression but it probably is appropriate for her also to be treated for that depression, especially since you're saying she was kind of in that state before she even started taking it.

Yeah

It's an important thing to talk to one's doctor about. And if the doctor doesn't respond then ask to see a psychiatrist or take oneself to a psychiatrist because those are the doctors who specialize in moods.

Yeah.

And because actually people say well, you know, I should talk myself out of this or…

No.

It's that, you know, I'm in a tough situation. But there's actually chemical changes going on in the body and there's medication that balance those chemicals back out. And when you're depressed pain is worse. If you're already tired, you're more tired. It exacerbates everything that's already going on. So it's really in her best interest for, you know, for you to be a good friend to advise her to really ask her doctor about that depression about getting that treated.

Okay.

And sometimes when someone starts with one of those interferon drugs…

Yeah.

They may get depressed initially and that could be a short-term thing, so that might also be something that the neurologist could explain to you or her.

Yeah because I mean I take the evidence and the whole problem but she seems like she's having a problem.

Yeah, everybody is different.

Yeah.

Definitely. I would absolutely have her or you talk to the doctor.

Okay.

And she's lucky to have you looking out forher.

I always add my two cents.

Thanks for calling.

Yes, and keep supporting one another.

Okay thank you.

Thank you, Jane.

Okay.

Wade, do we have any other questions?

At this time there are no further questions.

Okay, Laura, you want to continue?

Sure. One of the things that's inevitable when you're talking about a progressive degenerative disease such as MS is change. There's changes in relationships, changes in roles, responsibilities, even finances and housing may be affected. And this can lead to struggle and frustration.

People are sometimes resistant to giving up tasks they can no longer do. Just to use traditional roles as an example, not that I feel that these are set in stone but I know these are traditional roles when we think about it. Women who were used to doing housework may no longer be able to physically do that. Men who were always in charge of the finances may be unable cognitively.

And conversely, you think about the caregiver who may never have done these tasks now needs to learn them for the first time. And this can lead to power struggles and resentment.

And it's important to empower your loved one as much as possible to do what he or she is still capable of. Maybe to help them feel important, you can also ask them to teach you and guide you even before it's time for you to take over the task completely and that way there's a transition and it's smoother and slower. And I think it would be a lot less upsetting for both of you.

So talking about stress in general because I think that's why we all gathered here today, one of the best ways to reduce some of the stress is to be prepared for pretty much anything. One of the areas to really think about is legally. Make sure that both of you have all of your paperwork in order, your advance directives, including a Durable Power of Attorney, Living Will, Healthcare Surrogates and if it's appropriate a Do Not Resuscitate Order. It's also helpful to preplan and possibly prepay these funeral details so that that's not done in a panic or something.

Well I'd like to just interject for one moment here. All of those words and those things that you're saying are kind of scary to people who aren't familiar with them.

Okay.

And I just want to mention they can call on the MSF any time. We have actually a very good article about Advance Directives. And it's not nearly as complicated as or as overwhelming as the words sound.

Right.

So that's just something to keep in mind. And if you've ever been through an experience where you haven't preplanned, you understand the benefits of preplanning.

Absolutely.

It's really a good idea.

It's interesting that you interjected and said that they're scary. When I do this with a PowerPoint presentation and suddenly behind me I call them the unmentionables. And I've got this great cartoon of this big bald guy with his finger over his mouth like with a shushing sound. So I appreciate that.

I had a situation recently where a caregiver was caring for her mother and she got into a crisis and had to be put on a respirator and there was an argument, you know, the doctors had pretty much said that she wasn't going to recover from that but there was the option to put in a trach [tracheotomy] and send her to a hospital 100 miles away where she could live out her life with a machine breathing for her. And my client's brother insisted that that's what they do.

But gratefully this woman had written a Living Will and had named her daughter as her healthcare surrogate, so she had the final say so. And one of other unmentionables is hospice. And hospice is very helpful in coming in and explaining the process and giving counseling and pain relief and those things and that's something to not be afraid of.

Hospice is a wonderful resource and it doesn't mean the person is going to die any minute now. In fact it's a shame that people don't access Hospice until what turns out to be the last couple of days or weeks. They're available sometimes for years when there is a possibility that the degenerative disease going on and there's a late stage that a doctor might say that this is the late stages of MS. It might be very appropriate to bring Hospice in.

And what I say is if they don't die in that six-month period it's not a failure. They either renew the order because they're still in that process or they discharge and the person is rallied and doing better. But don't ever be afraid of Hospice. Always document to the (unintelligible) and mention the words end stage of (use), ask your doctor if that's appropriate.

Find your local Hospice and get a consultation because they're just very helpful - they have support groups. They have pastoral counseling. They have social workers. They have people that can come help with personal care and respite and all of these things that are so difficult to access and…

So basically you're saying that Hospice doesn’t have to mean the end.

Absolutely not.

I think a lot of people - I know I generally associate Hospice with that.

Right.

Now with MS it can be relapsing and remitting and…

Sure.

And someone can be in pretty good health and then have an exacerbation and be homebound for a while. In a situation like that would Hospice be appropriate?

Well it's individually decided between the doctor and the Hospice. If somebody is declining and it looks like that they, you know, really need extra help and there's a possibility, I mean, they do have to use that six-month mark that it's a possibility. But heck it's a frequent possibility for anybody that, yeah, the disease has a taken a decline it might be very appropriate to bring Hospice in even temporarily. And like I said, if they rally they come back and then they'll say okay we're going to discharge for now and call us again if you need us. And meanwhile you've had that wonderful resource available to you.

That's great. Does anyone have any questions, Wade?

If you would like to ask a question please press star then the number 1 now.

Well if there are any questions feel free to interrupt us, okay?

Yeah, that's be great. Okay so some - right along the lines of planning ahead, one of the other things I'd like to suggest is whether you may never - ever need it or not go ahead and take a look at the assisted living and nursing home facilities in your area. This again is also very helpful to know before a crisis where you want your loved one to go. Ask about waiting lists.

Some of the places about which you hear the most good things, the best things, have wait lists and it's sometimes very helpful to get on those wait lists. If they call you and say a bed is ready and you're not ready, say I'm not ready, please keep me on the list.

Also you can talk to the admission staff about emergency respite in case you were to become ill or be called out of town. Very often, you know, another family member out of town needs you or there's a funeral you need to attend then if you have a relationship with one of these places and they have a bed open, you can say okay, can I bring my loved one there for a couple of days, weeks, whatever you need.

When you talk about that I can't help but think of the way people tend to feel when they lose a loved one and they bury a loved one. And then they set aside a plot for the, you know, someone else in the family. And it's almost like you're afraid to even think ahead that something is going to happen to this other person because then that, you know, thinking about it and planning might make it happen. And in your experience you must see that that's not the case.

Right.

So do you know what I'm getting at? It must be hard to get on a list for an assisted living if you're loved one isn't in that position yet.

Right.

Almost like you're willing that to happen.

Right, well that's that kind of backward magical thinking and certainly that's, you know, people are very hesitant to preplan their funerals or preplan emergency respite because you don't want those things to happen. But as you have also said when it's happening that is not the time to be going and finding a place.

Right.

If you, you know, I use the example of the appendicitis that, you know, no matter how healthy you are, no matter how old, how young, how good your nutrition is anyone can have an appendicitis attack at any time. And it puts you in the hospital for a day or two.

And if you are the sole caregiver for someone who completely depends on you, you have to know what's going to happen for that person immediately as the ambulance is driving off with you. So those are the things. Have it available. I call them the God forbid. Of course nobody wants that to happen.

But there are some things that are completely out of our control and if you have arranged with a place that hey if you get this call in the middle of the night you're going to come take my loved one or a home health agency. You get the call. You need to send someone to my house. You know, very often you need a friend or neighbor to fill in that gap a little bit but you can leave this information right on your refrigerator or right with that first emergency call person and they know, okay, if you're going off to the hospital we're calling XYZ assisted living and they have all of your information and they're ready to take you.

And you'll talk with them. Do they need you to keep a chest X-ray up to date? Or what kind of information do they need in order to take your loved one at moment's notice? And they're used to this. They'll work with you on that. And of course nobody wants these things to happen. But the more prepared you are for them maybe the less likely they will be because I kind of live by Murphy's Law sometimes. If I don't carry my umbrella I'm sure it's going to rain, you know.

That's true.

So, yeah, don't hesitate for those things. And even funeral arrangements I see, you know, somebody passes away and the kids come flying in from all over the country. And they're like oh we don't even know what funeral home to go to. We don't even know where to begin. That's not the time to be thinking about that. You provide a big gift and a big service to the rest of your family when you make those decisions for yourself or you and your loved one make them together.

So let's get back to stress because I know it's on everybody's mind. And I've got another list of some day-to-day things that can just reduce your stress as it comes up. One of the things I like to call pick your battle, when things come up ask yourself is this really worth arguing over. I do a lot of training and speaking to people dealing with Alzheimer's and I understand that very often there's a cognitive decline with MS as well. So maybe they don't want to put their pajamas on.

Well I once heard a great speaker say there are no pajama police. That's not a fight you need to fight. Let them go to sleep in their clothes. As long as you're keeping them safe and healthy and protected, a lot of the other stuff is not important. They don't want to take their medication. We have a whole handful stuff.

You know what's life preserving. They don't want to take their vitamins. Take their vitamins for that parent or try it again a little later. Some of those things are not worth getting both of your stress levels up. Another thing people tend to do is schedule themselves into stress, trying to get too many things in a day, running to this doctor and that doctor because we're already out.

Well you're both going to be exhausted and what if one is running late? And you have to just try to schedule things at your annual loved ones best times of day. And if you have a doctor who you know tends to run late ask can we call ahead of time and see if the doctor is running on time or not so we don't have to wait in your waiting room and instead we can wait at home? A lot of times, they will work with you on that. They don't want you drumming your fingers in their lobby, either.

Share the work. Some of you I am sure are very much out there on your own but for others, there are family members out there who maybe could be pitching in some more. I heard another caregiver counselor on a videotape tell a story.

One of her clients said to her, you know, I'm caring for my mother. She's got Alzheimer's. My brother lives down the block and he won't lift a finger. He won't help. Will you talk to him? So she went to talk to the brother. And she said, what's the deal. Why aren't you helping your sister with your mother? And he said, you know what? It's just so hard for me. I cannot see my mother like that. I can't deal with it.

She said fine. Mow your sister's lawn. Pick up her kids from school. Get her dry-cleaning. There's ways that people can help you without actually doing the care giving tasks if they're not comfortable with that or you're not comfortable with that.

That's very true. Good point.

Thanks. And that goes right along with ask for help. There's a whole generation that have been programmed you can do it yourself. Pull yourself up by your bootstraps. You don't need anybody. But you do. You weren't equipped for this. No one can do this by themselves.

And then I hear stories that neighbors come by and church members come by. What can we do? What can we do to help? And no nothing, we're fine. No you're not fine. You need something. Let them go pick up groceries for you. Tell them what you need. That they're offering to help they mean it.

Confide in people. It was nice that Jane called in and said she and her friend talk to one another about what's going on. Let people listen. And right along with that, recognize your own limits. Set realistic goals. Or as I said earlier, you're not going to be a super perfect caregiver. You do what you can do.

And then forgive your imperfections and your mistakes. You're going to make mistakes. You're going to yell sometimes. You're going to miss an appointment. Those are all forgivable things. Stop and say, okay, that's me being human and being a stressed out caregiver. What can I do to move forward from here?

It's very important to keep your interests and hobbies. Some of those things can even be modified. Maybe you can't get out and play your sports or take classes. A lot of things are available online. I had a client who really wanted to take genealogy classes at the library but she couldn't leave her husband alone. I said, I'm sure there's classes and resources and things to learn that online. Buy books. Get tapes. There's so many things you can do to bring those things home.

Keep yourself organized. I just came from a very depressed caregiver the other day and she's just got little slips of paper all over the house and she can never find the thing that she needs. And my best advice to her was get one notebook and whether it's in any particular order inside that notebook just always write everything down in that one notebook so you know at least there's only one thing you have to pick up and look through.

Laugh loud, laugh often. Like I said, find the humor in it. Laugh together. I'm preaching to the choir when I say learn about the disease. That's great that you're choosing to be on these teleconferences and participate with the MS Foundation. The more you know, the better you are - you're going to be. There's not going to be as many surprises. You know, knowledge really is power.

Savor the good times. Chris mentioned sometimes people decline a while and then they really rally. Well if there’s a good time and your loved one is able to take a short trip or at least just talk about the old times and those kinds of things. Enjoy those times and save up those smiles for the times when it's a little more rough.

And check in with yourself or maybe get a buddy to keep checking in with you on your stress level. Kind of, you know, even at the end of the day kind of think, all right, on a scale of one to ten, how did I do? And notice when the stress is higher. What's going on? What can you be doing to maybe change the situation?

Some of the good things to do for yourself, deep breathing exercises, guided imagery, meditation, yoga. These things, again, are all available on audio or videotapes and books. If you enjoy music, if you enjoy reading, those are terrific escapes.

And you can call the MS Foundation and we also have a lending library.

Oh great.

And we have a lot of things like exercise videos, books, resources for caregivers, information of Advance Directives and Living Wills and also fun stuff to read, inspirational stories, books about keeping your humor, everything that Laura is talking about. You don't have to go out and spend money at the bookstore. You can call us and we'll mail it out to you. You can borrow it for free and then send it back when you're done.

Terrific. Can't beat that. And the conference that Chris had mentioned, Fearless Caregiver, Gary Barg, who is an old friend of mine, wrote that book. That’s a wonderful book and he also publishes a magazine called Today's Caregiver, and an online magazine, Caregiver.com and some wonderful resources there as well.

Excellent resources.

It's interesting. I met Gary when I was working in a nursing home and he brought his grandfather in to be admitted. So he tells that story a lot when he does his conferences and I kind of smile because I know I was that person that was a gateway for him. And there's people that you meet along the way that really can make a difference, so I was glad to be involved in that part of his life and that we've kept our friendship all of these years.

He's a very special caregiver.

Yeah, he's really - he's turned his experience into something that the whole world can benefit from.

Yeah.

So we've talked about the day-to-day stress and we've talked about taking care of yourselves. And here's another one of those, I guess, unmentionables, that there might come a point when you might just have to cry uncle and say I can't do this anymore or I can't do this by myself or home is no longer the best place for my loved one to receive their care. There's a lot of physical demand in caring for somebody with MS. And very often it's more than a loving spouse or a child can do, especially if you have physical limitations or you're just aging along with them.

If there's weight differences, if you're a 100-pound lady with an 180-pound husband who falls a lot, it might be physically impossible at some point. But what I say about that is not that you're going to stop being a caregiver but that it's time to expand your team.

Some people with resources or with insurance can hire someone to come into their home and then you've got a team of two. But most people have to turn to those outside facilities like assisted living and nursing homes we mentioned before. And if that happens, you're care giving role doesn’t end. It's just a bigger expansion of your care team. Now in addition to loving spouse and child or sibling or whoever you are, you're team extends to include doctors, nurses, aids, social workers, dieticians, activity therapists. And while they have their specialties, so do you.

You're an expert in who you're taking care of. You know whether she likes raisins in her oatmeal or whether he likes to have his shower at night. It's very important if you've reached that stage that you sit down with the staff of the facility and tell them those important little things, that they can't maybe be so rigid in this case, that they're going to upset your loved one if they try to get them up early in the morning to take a shower. And those are not unrealistic expectations.

You need to work with the staff and let them know you're part of the team. And you understand that they have a lot of people to care for. But you want to care about your loved one, maybe not ever as much but certainly to a great extent and to honor their wishes and value their rights.

And I know when I say that nursing home and assisted living, dollar signs start dancing in your head, so think about some of the funding sources, Medicaid if you meet those requirements. A lot of places have a Medicaid waiver program, which Medicaid would pay for nursing home. And these waiver programs pay for either some help in the home, not 100%, or to go an assisted living facility and very often the VA if somebody was a veteran or the surviving spouse of a veteran they might be eligible to get some help through the VA system.

And you may be surprised to know that the nicest places in town also take Medicaid. And by law they're not supposed to treat your loved one any differently than people who are paying privately. It might be something like they'd have to share a room. But the care is going to be the same. It's wise to work at early on with an elder law attorney to plan for Medicaid, again like Chris was saying, oh my God if we start planning for Medicaid that means we're going to put him in a nursing home.

No, you just want to be ready in case it comes to that because that's going to be the only way to preserve funds that you're going to need to continue living in the community. And those laws are changing literally by the minute. So if you consulted with an elder law attorney in the past, check back in with them because there was just some legislation that passed and state by state it's going to be rolling out, so you want to want to know if there's been any changes in those rules in your state because some of the (unintelligible) things that people might have been advised may no longer be in effect, may no longer be appropriate.

Okay, what would they ask specifically? How would they word that question?

Well generally if you've worked with an elder law attorney it's called Medicaid planning.

Okay.

Which means you might be taking your loved one's name off of certain accounts. There used to be - they used to advise people to put money into annuities because that was considered an income source rather than asset. That's something that's changing.

You used to be able to give a minimum amount to family members as a gift and that's changing. So you really in order - because for somebody to be eligible for Medicaid if they leave a spouse in the community there's a certain amount that the spouse can keep and there's income caps. And I believe this is different state to state so I don't really want to make any broad statements.

But those are the things you want to be familiar with because if you're loved one needs to go into a nursing home and you pay privately that's costs a lot of money. And if you're going to need that money to continue living in the community you're entitled to a certain amount of it and you're entitled to protect some of it for yourself.

Wade, do we have anyone on the line with a question?

Ladies and gentlemen, please press star then the number 1 if you would like to ask a question.

We have about 15 minutes left to take advantage of (Laura)'s experience and knowledge so call up and ask her a question.

I must have covered everything.

I guess so.

I do have one more bit I did want to talk about. It's kind of a wrap up and I hope we do have some questions after that. And I know you and I, Chris, mentioned that maybe talking about cognitive changes, although I think that was the last topic of your teleconference but I'm comfortable speaking on dealing with people who are having cognitive changes and memory problems and confusion.

Okay.

But one of the things I do want to put out there just like I gave you the list of things to recognize for depression is also signs of burnout because there might be a point where you're just going to say that's it. I need more help. But there also might be a point where you're just going to push it and push it and you're not going to say that and it might manifest in other ways. And I want you to watch for these other things.

If you find yourself snapping at your loved one often, if you're always irritated, if you're not laughing anymore, if you're constantly tired or pressured, if you're losing sleep or sleeping restlessly, if you're yelling, screaming and crying fits and raging, or you find that you're withholding affection, that you can't even feel love, that you don't want to reach out but you don't want to touch or be affectionate with your - with the person you're taking care of when you used to, you really have to look at what's going on with you that you could be burnt out.

And this may not mean that's it I can't do this anymore. It might mean you need to start accessing some of these other things that we've talked about, the support groups, the respite, the counseling and asking other people for help that you have overdone it for yourself, that you've been neglecting yourself and it's turning into resentment and that's going to be dangerous all around.

Laura, if you talked to a caregiver who was experiencing burnout, what would you tell them to do first?

Well I think first, to look and see do you want to be continuing to have your loved one at home with you. Do you still have it in you? Or have you really reached the point that home is no longer the best place? And if they say yes I want to keep them home. I have to do this, then it's time to bring in some help. There are a lot of steps along the way. It's time to hire help to come in, access the local resources to get funded services coming in to enroll your loved one into daycare so that they're not home all day staring, you know, staring at you and following you around. You've got to get some…

Can you talk a little bit about - what is adult daycare? What if - if someone were to bring their loved one to adult daycare, what would it be like? What would the day be like for their loved one there?

Well, kind of what it sounds like. If you think about child daycare it's appropriate activities. Some of them are structured specifically for people who are having cognitive problems, such as ones usually run by the Alzheimer's Association and others are just general for people who need to not be at home. A lot of times they've had physical ailments, Parkinson's, stroke, and things like that.

Some of them are very sophisticated and are able to separate out the groups according to their level of functioning so that lower functioning people can do less challenging activities while higher functioning people might be doing crafts, doing trivia questions and things like that.

Other times, they are all together in one big room but they try to bring activities that kind of meet them in the middle, stimulate them intellectually, socially, sometimes physically, some chair exercises, good supervision, structured programs. Most of them have a nurse on staff so that medications can be administered.

They will help - most of them can help someone to use the facilities or change incontinent briefs. These are questions to ask before you enroll your loved one into a daycare. A lot of them are run by what we call the lead agencies that most communities or cluster of communities have, counsel on aging or something like that, a division of senior services that hosts these kind of programs, some of the nursing homes have programs, some assisted…

Is adult daycare something that you would say to your loved one, how you would like to try adult daycare? I mean, I would think that in general people would be opposed to it, at first.

Right. Well that's funny. What I say a lot of times is that there's three kinds of people in adult daycare. There's a group that's at work. There's a group that's at school and there's a group that's volunteering. And most people don't even realize that they're in adult daycare, if they have some cognitive issues.

If somebody is fully functioning then, you know, you probably need to be honest and open with them. And sometimes if they need you can - they will really play it up if they need to feel that they're at work you can give them a paycheck at the end of the day. If they need to feel that they're volunteering then let them serve the juice or coffee or cookies or hand out the song sheets.

Whatever the person needs in order for it to be okay to be there is really how to approach it. Sometimes they are cognitively with it and they notice the stress you're under and it's a very open conversation. I love you and I want to continue taking care of you but I can't be home with you all day every day. We both need some time apart.

There's this wonderful program where you can be with other people where you can be stimulated where you can play games and, you know, sing songs and whatever you like to do. And that way you can be there and I'm going to go out and have lunch with my girlfriend who I haven't seen in a few months. Can you do this for me? Very often they've very willing to do that for you. They love you and they know the stress you're under. And it's a great win-win again.

But like I said, sometimes there's sometimes there's those little tricks you need to do to get them there. Have the doctor order it. Call it a club. They're very - they're not very, you know, they're pretty much the same as a senior center which people go to one their own to play cards, to take classes but there's usually a little more structure. There's lunch and like I said, the nurse is available, so if somebody is really having a lot of medical issues you want that kind of structure and safety if anybody has any tendency to wander.

And do you encounter a lot of guilt in the caregivers that you deal with?

Of course.

How do you handle that?

Well I think the key is for everyone to know they are doing the best they can. And if they have an opportunity to go and do something for themselves that their loved one can no longer do that's okay. They can do it for both of them. It - guilt is a very tough thing.

I find it a lot with adult children who are carrying themselves that - the sandwich generation, the double-decker sandwich generation I've seen that is kids taking care of their parents and then taking their grandchildren during the day. It's so hard to stretch yourself into so many different directions you can't possibly please everyone. And they just need to know that they're doing the best they can.

And if comes a point when something has got to give that their marriage has got to be more important and that there are other ways for the parents to be cared for. That's not their responsibility to be the only one-on-one caregiver - hands-on caregiver, that if they move their parents into an assisted living or a nursing home that's not a disservice, that that's expanding the team. That's (playing) yourself up.

I had a gentleman in a support group once say moving his wife into the nursing home gave him time to love her. He was torn about it. But when he realized that he didn't have to fight with her about taking her medications or taking her bath and he could just go and hold her hand and take her for a walk, he got his wife back.

And it really is a beautiful thing and usually that's when the guilt comes in is when a caregiver has done all they can and they can't do the 24-7 anymore and they bring in other resources or considering moving their loved one out, that's really when the guilt usually kicks in.

Right. And what about when your loved one is experiencing cognitive impairment but it's not major. But it's causing conflict in the communication in the relationship? I notice a lot of caregivers struggling with that. They get angry and inpatient and frustrated and even though they know that the care receiver cannot help it, how do you help people through those kinds of situations?

Well what I call ‘the keys to the kingdom’ is to know that you are never going to win another argument with someone who is cognitively impaired and it is going to frustrate and anger both of you. So if they think the sky is green and the grass is blue, yes it is. And if they think that they want cereal for dinner that's okay. If they're asking about their mother who died 20 years ago they don't know that she's dead.

So a lot of what we talk about validation therapy is not to argue with them and not to bring them back into reality but to live in their world as long as they're not frightened, if they're having delusions, if they're having confusion, to assure them they're safe. They're okay. They're taken care of. If they're asking to go home that's very often because they don't recognize the home that they're in. They're thinking of a home they lived in a long time ago.

But what they're asking is home is where I feel safe, where I feel comfortable and you reassure them that you, you know, you are well taken care of and we'll go home tomorrow.

In the early stages where somebody is argumentative and they don't realize that they're having the decline, it's very touchy. And again the most important thing is keeping them safe. If they shouldn’t be driving then always have an excuse to go with them and do the driving. If they are doing the finances and they're starting to mess up, like we talked about earlier, do it with them. Learn from them.

Assist them rather than taking it over and saying you can't do this anymore. If they're repetitive, you have to repeat what you said like you’ve never said it before. Like when are we going to the doctor? We're going to the doctor at 9:00. And which doctor are we going to? Dr. (Smith). Okay. And when are we going to the doctor? Nine o'clock.

And write it down. Refer them to where you've written it down. Keep a big calendar if that's one of the issues. And really empower them to use the strengths that they have but there isn't a lot you can do except to just readjust yourself. What we say is they're not going to change. You have to.

I thought it was interesting what you say about if they're going to, for example, the adult daycare.

Uh huh.

And they think they're going to work and, you know, give them a paycheck if you need to.

Yes.

Are you saying - in a way that seems kind of like choosing your battles. If that's not going to be harmful to them or you in any way it seems that it's sort of choosing your battle to let them believe that that's where they're going.

Right. I like to call them creative truths.

Okay.

A lot of people have issues where, you know, we're all taught that lying is bad and people call them therapeutic fibbing and all kinds of things. I call them creative truths. I don't even like to use the word ‘lie’ in it because it's keeping peace in the house. It's doing what you have to do to get things done.

And it is - it's creating the world they want to live in and, you know, it may be a little misleading and a lot of people do have issues with it at first. But when you see how happy they are to have gotten their paycheck or to have been able to be a volunteer for someone then you'll see that it's okay. You're just living in their world and you're creating a good, safe, healthy world for them.

Wade, do we have any questions from callers?

We do have a question from Nancy from Nebraska.

Great. Hi, Nancy.

Hi. I don't really have a question. I just wanted to thank you for tonight's program. The questions that I did have you have covered all the information and given a lot of suggestions and, like I say, input about. And I just really wanted to thank you for everything that you've, you know, talked about tonight and just all of the suggestions and information you have given and just put all the programs that the MS Foundation does sponsor. It's really nice. Thank you.

Thank you very much.

Thank you so much, Nancy. That's wonderful feedback.

Like I say, you've really given a lot of information tonight and just a lot of suggestions and everything I think you've covered all the bases.

Well great. That's why we're not getting questions I guess.

Thank you very much.

Oh thank you so much. It's very kind of you to say.

You have a good evening.

And you too.

You too.

Bye-bye.

Bye.

We also have a…

Go ahead.

I'm sorry, ma'am. We also have a question from Mary Jane from Lockport, Illinois.

Hi, Mary Jane.

Hi. Thanks for taking my question. I mean I guess I have a question about the preplanning. I do care support work and one of the women that I work with her care partner won't indulge in the preplanning aspect.

He says, you know, okay and then never gets around to, you know, helping with and looking at assisted living, talking about funeral arrangements and things like that. How do you get somebody to talk about those things when they won't do it?

Well that is a tough one. The person that he's caring for is she able to verbalize that it's important to her? Is she in a state that she can participate?

Yes she is.

Okay well she might be a place to start. I imagine she's probably been needling him. But maybe that she appeals to him and how important it is for her to know that everything will be taken care of, that she doesn't want anybody to be in a panic. Also, are there other fam