(upbeat music) (projector clicking) - Have you ever wondered where the television signal you're watching is coming from?

♪ I love to go a wanderin' (projector clicking) ♪ along the mountain track - Welcome to True North.

(upbeat music) (mysterious music) - Good evening and welcome to Mainewatch (upbeat music) (projector clicking) Welcome to From the Vault.

A celebration of 60 years of Maine Public Television.

April 11th is World Parkinson's Day, a day to focus on awareness of this disease that affects over 1 million Americans and an estimated 7000 Mainers.

So we will go back to 2010 for "Easing the Burden".

A half hour special that speaks with Mainers dealing with the disease, their caregivers and some of the community resources available.

It also features an interview with actor Michael J.

Fox, who, of course, suffers from the disease and has become one of the most well-known advocates for its awareness, support and research.

In the second half of the show, we will focus on the people who are caring for a loved one with dementia in 2009s, "Caring for the Caregiver".

We speak with local people who have that challenging and often difficult task and the support system that is available to them.

Now, both programs feature resources that were available at the time, but for more up to date information, we have added to links to current websites throughout each show.

If you would like to watch this show again or share it with someone, please go to the "From The Vault" playlist at youtube.com/mainepublic Now let's go back to 2010 for "Easing the Burden".

The following is a production of the Maine Public Broadcasting Network.

(gentle, ethereal piano music) Walking through the Cole Transportation Museum in Bangor allows Gary Cole a chance to reflect on the rich history of the antique vehicles and memorabilia collected by his father, Galen, over many years.

Gary shared his father's love for transportation and joined the family business, Coles Express, where he rose to eventually run the company as CEO.

They owe more freight in the state of Maine than the rest of them combined.

And they've won their place in the rugged race because they remember his life.

No one ever knocked off the man advised at the time.

And then he goes on drilling and rolling We're staying number one.

Soon after retiring from Coles Express, Gary began to slow down to enjoy his retirement years.

It was about this time.

He began to experience some minor but aggravating symptoms that moved him to seek answers.

Well, I had a twitch in my thigh a very small twitch that occasionally would activate itself.

And I went to the doctors and he wasn't sure what it was at that stage of the game because it was very minor.

And as the years have gone by, his drought and the Parkinson's.

His days now are spent giving back to the community.

Spending time with his wife, Marsha, and managing his Parkinson's disease.

Is a disease that doesn't go away.

And is handled by drugs only.

And so it's going to progressed into something worse as time goes on.

And it's really a twitching of the muscles and tension of the muscles will impact the whole body before too long in August, or should I say it always?

In my case, it started on one side and then stayed on that one side.

So I'm right handed and it's in my right side.

So I've learned how to do things with my left hand.

Dr. Edward Drab is a neurologist in Scarborough who specializes in clinical treatment of Parkinson's disease.

Dr. Drab has been involved with investigating the genetic origins of Parkinson disease and educating the public about the disease.

Parkinson's disease is a neurodegenerative disorder.

That portion of the brain that makes dopamine is being injured, not producing enough dopamine, this control for movements of an individual in relationship to their environment.

Initially with Parkinson's disease, the first visible signs are arresting tremor, slowness in rising and walking, perhaps decreased arm swing and loss of expression on people's faces.

The impact of Parkinson's disease is not only felt by the sufferer, but also by loved ones who take on an increased caregiving role as the disease progresses.

I noticed around the house I'm in charge of more things.

I do a lot more shoveling and of the snow when things that he can't find finds it very hard to do, especially if it's really heavy.

I've been mowing the lawn mower It's just more responsibility.

Gary approaches his Parkinson's the same way he approaches anything else in his life.

Well, you can either be optimistic or pessimistic, and I will remain optimistic.

Thank you.

To me, it's a life decision that is being made and if you deal with life in an optimistic approach to everything that you do, you'll and you'll enjoy life.

The quiet walks through the museum offer Gary time to appreciate the history collected there and also provide an opportunity to imagine a future without Parkinson's disease or whatever.

Oh, man.

And I have.

No one better side to either side.

God.

So we pass on any side of the street.

The late dancer and choreographer Martha Graham once famously said, Dance is the hidden language of the soul of the body.

For people with Parkinson's disease, dance is one of many activities that may serve the purpose of stemming the decline of communication from the mind to the body in Parkinson's.

Strength, balance and range of motion deteriorate over time, leaving the sufferer to contend with the aggravate symptoms of tremors, muscle rigidity and slowness of movement.

To the side and back.

Beyond the approved drug therapies for Parkinson's disease.

Doctors suggest patients keep moving through exercise in an attempt to retain mobility.

In Parkinson's disease exercises is very important just to keep people moving, working on their balance, preventing falls because as people move and they work out their body, they overcome the stiffness and rigidity of Parkinson's disease.

All right.

And allow your arms to fall.

The Dancing with Parkinson's class held weekly at the Quarry Hill retirement community in Camden, takes a fun and unique approach to keep people with Parkinson's active and physically engaged.

Forward.

For Let's Try Double.

Time One.

More Time and a forward.

The program was originally started in 2001 in Brooklyn, New York, by Ali Westheimer of the Brooklyn Parkinson Group, in collaboration with the Mark Morris Dance Group.

Rest your feet sneaky.

The Camden class is led by Belfast resident Katie Transito, who conducted similar classes in Connecticut before moving with her family to Maine.

I really enjoy dance for myself and I enjoy sharing that with others, and I really believe that this is a program that benefits people with Parkinson's, that this is something that really helps them with their movement.

For many people with Parkinson's, movement is frustrating.

And so this is an opportunity for them to enjoy their movement and feel like they can do some new things that they hadn't thought of before and participate in a joyful social activity and something that's artistic and creative and also helps them feel like they have some power and grace about their movement that they can do some things that they may not have thought they could do.

The class combines stretching, breathing exercises and rhythmic dancing to varied musical genres from cha cha to classical.

The class is designed to be effective for all ranges of ability and limitations.

Jenny Cuthbertson has had a lifelong affinity for dance and has been attending the Dancing with Parkinson's class regularly.

I know that's something, and I can't say whether it's Katy's program or the other exercise programs or a combination of all, but something is making me feel stronger and more more together.

Not feeling is so rattled as I did with the Parkinson's, making me feel so out of balance and all that kind of thing.

And I'm sure that this will only be worse.

So the longer I go.

And it's just plain fun, medicine seems to.

One of the things that stands out in my mind is the ability to free our selves from the this incapacity to move in.

Katy does a wonderful job of providing the mechanism for the rain.

Let's get that hose and start dragging it out to the garden as heavy.

There's sort of a.

Renewed sense of being that comes along, and you're already looking forward to the next time.

Wow, that is crazy.

Finding support within the community is crucial to managing Parkinson's Disease.

The support group held at Quarry Hill is unique in that it was initiated not by an organization, but by Rockport residents Jim and Nance Brown.

Well, when Jim was diagnosed, we began to look around to see what kind of resources there were just to be able to maybe find out more about what we didn't know because we didn't know what we didn't know.

And we were surprised to find out that there was nothing in the midcoast at all.

So we went to a couple of support meetings, you know, in Bangor and Portland, and at that point decided that maybe we could try and get something set up here in the MidCoast area.

For the Parkinson's Support Group Jim and Nancy founded has been meeting since 2004 and offers guest speakers and support group sessions for both those living with Parkinson's and their caregivers.

The guest speaker of this session is poet and former school administrator Kenny, who read a few poems relating his own battles with Parkinson's disease.

This is not a battle of the flesh.

This is a battle of the spirit.

So as the years move along and my chronic progressive companion continues to wheedle his way into my life, I will adjust with a shrug and I will with.

The simple act of getting together with those who share the same circumstances does help the group members to process the intricacies of the disease.

The thing that the support group does for me is it lets me know that I'm not alone in this situation.

We talk about the pros and cons of various medications and how we're reacting respectively to those medications or difficulties with some other person in the support group.

As I just like the name implies, you get support in your you're not crazy.

This is happening to them.

So it's rational that it happened to you.

The emotional impact of Parkinson's disease cannot be understated.

It affects not only the Parkinson's patient, but loved ones too.

The diagnosis of Parkinson's brings with it feelings of anger, frustration, and often sets the stage for depression.

William Stamie is a board certified neurologist in Westbrook with additional training and expertize in Parkinson's disease and other movement disorders.

People with Parkinson's disease who experience depression should definitely inform their health care providers.

They should meet with a doctor they should meet with their neurologist and say, I think I'm experiencing some mood problems.

We know this is part of the non-motor symptomatology of Parkinson's disease.

There are ways to address it.

Gordon Geist has been attending this support group since its inception.

He understands the complex emotions associated with accepting a chronic disease like Parkinson's.

One problem that I faced when I first was diagnosed.

I was extremely angry.

Why me?

And the opportunity that the support group gave for me to meet people with similar situations, similar problems, similar opportunities, and to be able to discuss this in an open forum has made a tremendous difference in my mental outlook.

The difficulties of accepting the loss of independence and enduring the gradual loss of mobility are common frustrations as the disease progresses.

But that weight is compounded when dealing with the prospect of adding hardship to loved ones and navigating changing roles.

The caregivers, spouses and family members of those living with Parkinson's disease meet separately and discuss important issues that impact them.

What is frustrating for me is frustrating for a lot of other people in that group.

And they also can give insights into different ways to manage it, or different ways that have worked for them.

But it's the same thing that what I am feeling as we handle this illness together is the same that a lot of other caregivers are feeling I'm not crazy.

The Parkinson's group starts with light exercises and moves into a discussion about experiences with medications.

What's working for others and giving voice to common health concerns.

The comfort of being with others that share the common threat of Parkinson's disease offers participants a safe place to discuss their shared trials and small victories.

If you reach out and you find that you're not alone, that there are all these other people around you that are sharing this common experience, and you'll find ways of coping with the problems and issues that arise in your life as a result of the disease.

Capturing the subtle moods and colors of Maine's coastal landscape serves as a respite for Freeport artist Judy Siegel.

Soon after retiring as an educator, Judy became concerned after some troubling symptoms.

Well, at first I had a tremor on my left side, and it wasn't really bothering me, except it was strange.

And I was diagnosed then with essential tremor, which is not Parkinson's.

And about a year after that, other things started happening, too.

I was swimming at the Y, and my left leg was kind of dragging.

It wasn't kicking and I was taking a walk one time and noticed my left arm was just hanging there and just kind of looked at and thought, how strange.

And my husband had been suspecting it for a little while.

And he said, I think you should see someone.

So I went to a neurologist thinking, I know it's not Parkinson's because my father has Parkinson's and my symptoms were quite different from his.

So I was actually quite surprised when it was Parkinson's.

The diagnosis and subsequent life changes took some getting used to.

My daily life.

It's changed over the years.

It was actually a little harder in the beginning than it is now until we got medications worked out.

It was harder for me to get around.

Things were slower It was hard getting certain clothes on.

The aggravation of Parkinson's was eased a bit after settling on the right dosage of medication to manage the disease.

Judy's passion for creating art then became a tool in coping with the life changes that come with Parkinson's.

It's very therapeutic and I get lost in the process of doing it, and it takes me away from any worries about anything else.

I love to do it, and whether I like the product or not, sometimes I do and sometimes I don't.

That doesn't seem to matter.

And I just I love the colors.

I love since I do subjects that I like I love being able to study those closely in order to do the paintings.

Judy often finds herself in front of her easel at odd hours of the night due to her trouble sleeping.

For those suffering from Parkinson's, this is common.

Doing the art takes me away from thinking about the fact that I'm not sleeping, and it relaxes me.

And then I can usually go back to bed and fall asleep for a little bit.

More.

Parkinson's patients experience a lot of sleep disruption.

They may experience restless leg syndrome, periodic limb movements of sleep, obstructive sleep apnea, REM behavior disorder.

Vivid dreaming.

Not associated with restless leg syndrome and other sleep interruptions.

Judy has adapted to the disease, but she refuses to let it strip away her quality of life.

I was fearful that within a couple of years I would be in a wheelchair if this kept up, and I wouldn't be able to hold my grandchildren, things like that.

And now I'm much more able to take it a day at a time.

And the medications working so well that I don't have those fears.

And I guess I know the future hopes and challenges for me, but I try to really just stay in the moment.

She embraces each day more fully and focuses on what's important in the face that often comes to mind when thinking about Parkinson's disease is that of actor and author Michael J.

Fox.

Diagnosed at the young age of 30 while in the prime of his acting career, it was a long road to acceptance.

I lived with my diagnosis for about seven years before I told anybody about it.

I mean, beyond family and friends, close friends and a few business associates because I felt I was in a unique position because my appearance, my behavior, my my physical disposition is a part of what I did.

And I didn't want any was thinking about that.

The color, the way they perceived what I did So so I think that I think I, I kind of was in a sense of state of denial or at least non-acceptance for longer than I needed to be.

But once I, once I this gets you to a place where you just kind of it is so absolute.

It's so non-negotiable.

It just is what it is.

And so you need to put all your focus into to find funny therapy to work for you, finding a treatment that works for you and then finding the mental attitude that goes with that treatment.

You've reached the Michael J.

Fox Foundation for Parkinson's Research.

Once Michael went public with his diagnosis, he was immediately passed into a leading role in the fight against Parkinson's Disease.

The Michael J.

Fox Foundation was founded in the year 2000 in New York City and is wholly focused on supporting scientific research.

The foundation has grown to become the second largest funder of Parkinson's based research in the nation, second only to the federal government.

The foundation funds multiple different types of projects we fund internationally.

About 30% of our grants are outside the United States.

70% are in the United States.

We also fund both academic researchers, but also biotech and pharmaceutical industry.

Our basic approach is to see who has the best idea and the best plan to develop projects for impact for Parkinson's patients.

The impact of the Michael J.

Fox Foundation is felt right here in Maine at the Jackson Laboratory, located in Bar Harbor.

The funding that Jackson Labs receives supports the development and distribution of mouse preclinical models for advancement of PD research.

A preclinical model is an animal model that reproduces features of Parkinson's disease, whether it's a genetic mutation or the specific changes in the brain that occur in Parkinson's.

The Michael J.

Fox Foundation has made a very concerted effort to take what they think are the most prominent and the most important mutations that exist in the human population.

Put those into mice and say to the Jackson Laboratory, You need to distribute these.

You need to help characterize these, you need to help get these mice into the hands of the scientific community where we can work with them, where we can find out what it is we need to do to get to a treatment and to get to a cure.

For those whose lives aren't touched by my Parkinson's may not know anybody or may not have it themselves, know that, you know, I mean, just basic things like it's very rarely is a cognitive.

I mean, there is dementia and there is but but nine times out of ten, if someone's halting in their speech or halting it, then they get it through there.

And so and so don't don't just treat them any differently or just your expectations of them until you get a real sense of who they are as a person.

For people with Parkinson's, I said, just, just take it one day at a time is being formed and be proactive and be and be as positive as you can.

It's just about right now.

You don't know where this is going.

You can't know if you're newly diagnosed.

Your symptoms are probably fairly perceptible and and they're getting increased.

No question.

But don't jump to that point.

Just take it as easy as it goes and don't.

You know, when I was 4 seconds, I remember I could say.

If.

I remember correctly, I think I got into bed in like.

And then I.

Half a day that I went, let's sick.

What is this?

This is stupid.

And, you know, there's this feeling of if you're me, if you're in an accident and something catastrophic happens, you you step off a curve, get hit by a bus, and immediately you're in that new reality where the Parkinson's I notice is kind of like being stuck in the middle of the road with cement shoes on, hearing the bus coming.

And you don't know when it's going to get there, and you don't know how hard it's going to hit.

You know, it's going crazy or taking full or just running over your foot.

So and there's a lot of fear in there.

But if you if you can and this comes with acceptance, if you can just kind of say it is what it is today and I'm going to go and I'm going to get a good relationship with the doctor.

I mean, I understand the situation worse than all the treatments available.

I mean, perhaps get to a point where I can be proactive in the community and try to hasten change that are supporting researcher or just getting involved in the community with the patients or or getting involved politically from So those are the options for you.

And don't just sit around and thinking about, oh, God, I'm going to be quivering in a lump of inertia.

In a wheelchair with a blanket on my lap on the porch of the house, has a good time.

It's it will be, you know, good to.

- The following is a production of the Maine Public Broadcasting Network.

(gentle music plays) Welcome to Caring for the Caregiver.

I'm MPBN's Suzanne Nance.

Right now, there are more than 37,000 people in the state of Maine, living with some form of dementia.

Behind the numbers are real Maine families in every community.

Dementia and Alzheimer's disease have a life changing impact on the patient and on those who care for them.

In this documentary, we'll examine the challenges facing these caregivers, and explore the resources available to help them.

(elegant piano music) The span of time normally makes it hard to remember the older we get, but with Alzheimer's even the most ingrained memories can become inaccessible.

The difficulties of Alzheimer's disease have affected the 50-year marriage of Deane and Cynthia Lampfear.

- [Deane] There's the wedding party.

You remember these people?

- [Cynthia] Oh My Goodness.

- [Suzanne] Despite all they have endured they have a lot to smile about looking over photographs of their life together.

Memories that started by chance, with a piece of chocolate cake.

(zealous music plays) - [Deane] I had just graduated from prep school in Northfield, Massachusetts.

She had finished her freshman year at university and was waiting on tables at the Northfield Inn.

And I had seen this chick.

So about five days after I had graduated I was working on the golf course at the Inn.

And after work, I went on into the serving room 'til she walked by and I said, "Hey, come here."

So she came over and she said, "Yes?"

So I told her who I was and she told me who she was.

And I said, "Have you got any desserts left on your side stand that somebody didn't want?"

She said, "Well, I got a piece of cake, chocolate cake that guy didn't want.

You want it?"

I said, "Yeah!"

So she came and brought it out to me and we're talking, and I asked her what she was gonna do after work.

She said nothing.

I said, "Well, I'm gonna play golf.

You wanna carry my bag?"

She said, "Okay."

She carried it.

It's the only time, never carried it again, and that started.

- [Suzanne] They married in 1953 and then embarked on a shared life of education, rewarding professional careers, and raising a family.

Each shared a love for travel, visiting and living in exotic locations across the globe for Deane's job, as an educator abroad.

- I got into admissions and recruiting.

And so I was literally all over the world.

And Cynthia would, in Hong Kong, particularly in the Middle East and the Far east, they want the family, because it's a family situation and she loved it.

Cuz she just had to run the place.

She'd go off all by herself.

She'd always put down the name of the hotel in Chinese.

So if the cabby spoke no English, she could give him this.

And that's where I want to go.

- [Suzanne] Traveling took its toll and Deane and Cynthia eventually settled on a home base that served them into their retirement years.

It was about this time, Deane began to notice small changes in Cynthia, his wife and soulmate.

- When I first noticed that something was wrong, we were at a, this was down South Carolina where we lived, and we were at a dinner party and there must have been about eight couples there, and afterwards we played this game.

And Cynthia could not get it.

And I kept thinking, "What is going on?

This is a sharp woman.

She's a teacher and a librarian."

She just, it wouldn't process.

So that's when I started talking to my doctor and he said, "Well, you gotta go to this neurosurgeon or neurologist who was and so forth."

So he tested her.

He spent about an hour.

He was with her.

He was wonderful.

He was just wonderful.

Spent an hour with her, asking her all these questions.

And at the end I says, "Now, what am I gonna tell the kids?"

I go, "And I want to know what happened with this?"

Well tell 'em that she has dementia.

And she went back for a follow-up visit about three or six months later.

I forgot.

And he says, "Well now you better tell him she's got Alzheimer's."

See, I've got this down to a science now - [Suzanne] Alzheimer's execs a toll not only on its victims but also on those left to care for the loved one.

Family members thrust into the role of caregiver can experience a rollercoaster of emotions.

Maureen Callnan is a nurse specialist at the Maine Meds Geriatric Center.

She counsels caregivers on how to process and express their feelings and emotions surrounding the diagnosis of a family member with Dementia and Alzheimer's disease.

- When the illness is dementia or a neurological disease I think that's really quite challenging for caregivers because not only are there physical changes that accompany that illness, but also kind of the core of who the person is that they love.

The personality changes can very much be impacted.

- [Suzanne] On top of the emotional stress and physical stress experienced by the caregiver fatigue can also crop up.

The caregiver often takes on an increased workload at home when a family member becomes disabled.

- Our roles have changed all the things that she used to do I've picked them up pretty much.

- When the caregiver moves to the 24/7 aspects of caregiving really having a sense of what energizes them is very important.

So an introvert is energized by spending time alone.

So with 24/7 care and having people come into the home having those that space of downtime, alone time sometimes is very difficult to find.

If I know that about this person, if they know that about themselves, we can really attend to that later on.

And the extrovert is just the opposite.

Extroverts are energized by spending time with people.

So trying to carve out time for that person to be away from the home and spending time with other people outside of the context of illness, that can be very, very helpful.

- [Suzanne] There's a major pitfall for caregivers looking after a loved one.

The feelings of guilt and hopelessness.

- One of the real struggles is just how pervasive guilt is when you are embarking the caregiving journey.

And, by and large, what I find is that people set the bar in terms of their standards really quite high.

Sometimes they'll set the bar so high that they can't achieve it.

And then that really fuels a lot of guilt about wanting to do more, wanting to do better and never quite being able to meet that mark.

So one of the things that sounds strange to folks is when I say, "You know I really want you to think about striving for imperfection," and that doesn't mean, you know ignoring a safety issue that might be happening, but it's about really thinking about providing care to the best of your ability, knowing that from day to day your best is going to shift.

- The good moments are when we laugh about things.

The wonderful thing I think about, us anyway, with Alzheimer's is that she knows she has it, I know she has it, and I have said to, I have said to people for years I don't know if I've ever said this to Cynthia or not that it would really be funny if it wasn't tragic, you know, because just the things and fortunately she can laugh about them and I can laugh about them.

Because there are times when she'll say, "I'm so stupid," Not stupid, it's just that things aren't connecting right, you know, and we laugh about them and it's frustrating for her.

It's frustrating for me.

And there are times when, you know, as a caregiver I want to be here for her but I also want to get out, cuz I have my own life that I have to live, you know?

So I go to the store and shop, or whatever.

And she can sit here and read and so forth.

And she's not reached a point where I'm afraid to leave her alone or whatever, that'll come.

And she'll, every once in a while, will cry and say, "Why do I have this?"

Nothing you did.

It's not your fault.

It just happens.

Something goes haywire, and the plaque builds up in the electrical system in the brain and things don't connect the way they should.

(gentle music plays) - [Suzanne] One of the most important things a caregiver can keep in mind is he is not alone.

Lots of people are caring for a loved one who fell victim to a neurological disease.

Many times the situation is an aging couple with one spouse left caring for another with no other family support.

If that is the case, support does exist outside the home.

(Woman speaking) - My advice would be get ahold of a support group.

Somebody you can share with, talk with learn from.

Somebody else who's gone through or is going through the same thing you are, or your loved one is whether it's a daughter or a brother or a father or a mother or a husband or a wife or, or whatever.

Accept it.

It's always, the hard part is accepting it.

- Having an opportunity to identify someone that you can talk with, whether that's a natural support or a professional support to talk about the losses that you're experiencing in your life.

And even though that person can't do anything about those losses, just having an opportunity to talk about it and process it can be quite helpful.

- The support group I think is critical, because it gives me a chance to talk to other adults.

So going through, for instance, the the woman who was sitting across from me yesterday, Monday, her husband has it.

So I'm, she has a chance to talk about what she's going through, what her husband's going through.

And I can say, "Well this is how I responded to this situation with Cynthia."

And people who are more familiar with this disease than I am say, "Well, this was good," or, "This was bad," or whatever.

Or, "We understand where you're coming from."

- [Suzanne] Alzheimer's support groups are available to caregivers to help them navigate the powerful emotions inherent with caring for a loved one.

Feelings of isolation, depression and resentment are common as the disease progresses.

- My name's Tammy Leland.

I'm actually the director of nurses here.

This is a Maine Alzheimer's Association support group.

- [Guest] He asked me six times during the hour when I was there.

"How'd you get here?"

And I tell him again, the whole story.

I did that six times.

- [Suzanne] The process of talking with others who experience the same emotions gives meeting attendees a chance to hear how different people deal with the same daily difficulties of caregiving.

- All of a sudden you don't feel quite as alone.

- Well, I mean, he can still make sense most of the time, but sometimes I will suggest that he do something or ask him to set the table or something like that.

And he doesn't have a clue what goes, where.

- There's so many questions when it comes to someone who has Alzheimer's and how do you take care of somebody with Alzheimer's disease?

Where do you go for help?

There's not a lot of information readily available to you or I out in the community, but in the support group you can find out what other people have learned.

Different tricks that they may have tried and different experiences that they have had that either have worked or have made things worse.

So you kind of learn from each other's experiences.

- [Suzanne] Mutual support and providing information for those in the position of caring for a disabled loved one is the ultimate goal.

- One of the best ways to get information and help as far as what to do, what to expect, what's coming next.

When you're facing the fact that you are now the caregiver of someone with Alzheimer's disease is to come to support group.

- [Guest] Some of it's painful and some of it reassures me that I did the best I could for as long as I could.

(elated music plays) - [Suzanne] Regardless of how effectively a caregiver has adapted to this new way of life, eventually they will need a break.

A break from it all.

The physical, mental and emotional work the caregiver has to muster just to get through the day.

- Things were a little hectic for a while.

And my daughter lives in Greece, said, "Mother," she said, "You have got to do something.

You cannot do this 24 hours any longer."

- Respite care can take the form of a relative stepping in for the caregiver or a professional can be paid to provide in-home care.

Also taking the loved one to an adult daycare facility is another option.

- The daycare I didn't really think about.

We tried initially to get somebody to come into the house and I forget I think it was his daughter who called here to find out where he, where we stood as far as full-time care, and she found out about it.

And I'm so glad and that the day they forced me to it.

- [Group Moderator] Well, I wanna welcome everybody to horticulture group.

This is a group that's gonna meet every week.

- [Guest] Well, of course it's been a tremendous help to me to have her under the daycare program because it gives me five hours a day to tend to the grocery shopping and the housekeeping and the laundry and, you know, getting my act together for dinner that night, as well as exercise, which has been very important to me over all my life and gives me a chance to go out and walk for half, three quarters of an hour every day, which is vital.

- [Group Moderator] Did you used to enjoy gardening?

- [Attendee] Yeah - [Group Moderator] I can tell by watching you!

- Adult day is a program for those in the community who need assistance and or supervision during the daytime.

It's a great opportunity for family members, caretakers who need a secure or safe environment for their love during daytime hours if they need to work or have other responsibilities.

- [Group Moderator] Do you know the Nostradamus are an edible flower?

- [Suzanne] Most adult daycare programs offer flexible schedules that allow the caregiver personal time without having to wonder if their loved one is in good hands.

- Our activities try to include cognitive activities physical activities, social activities spiritual activities, and we also do community outings.

- [Group Moderator] Put the cover on and put them in the sun and they'll begin to grow.

- [Suzanne] The sometimes overwhelming physical, emotional and financial challenges for the family caregiver can be alleviated, at least temporarily with some form of respite care.

- Fatigue makes cowards of us all and you can easily get exhausted, and the more exhausted you become the more difficult it is to deal with these everyday problems.

So it's nice for her to have somebody else to be with other than me, 24/7.

If you are locked up with the same person day after day it can get a little tedious.

- [Suzanne] A study from the gerontologist journal shows the choice to seek respite care such as adult daycare helps to sustain a caregiver's wellbeing and delay out of home placements.

- I'm still with her every night.

I'm with her weekend.

It's only five hours a day, so that's pretty easily adjusted to.

(tranquil guitar plays) - [Suzanne] The creative process of making art is both expressive and healing.

The bright colors are metaphors for the colorful memories making up Donna Beveridge's life.

Two years ago, she began to struggle with her memory and sought help, and then came the diagnosis.

Early stage Alzheimer's disease.

- I was devastated.

I mean, no one wants to be given a diagnosis of Alzheimer's.

However, it probably wasn't as bad as it might have been only because I wasn't the one that was dragged in denial to go to the neurologist.

I am a person that likes to know what's going on.

I do better when I know what the situation is, and then I can just go ahead and make the best of it.

And I had been worried enough that I was relieved, I think.

You know, I was relieved because I had a diagnosis.

And because I had a diagnosis then I could decide what I was going to do about it.

- [Suzanne] While Donna's acceptance of her diagnosis helped her to cope her partner of nine years really struggled to make sense of everything.

- She was really devastated.

Her name is Betsy.

She was also angry.

She didn't really want life to change.

And she was worried, worried about what our lives were going to be, worried about me, and eventually what I had to say to her is, "You need a support system and you need to have some other people to talk to about this, that I can't make it better for you.

I want to, but I can't change what it is.

And I can't be your support all the time."

Although we talk about everything, I was encouraging her to go and be part of a support system.

And she did.

- [Suzanne] Recognizing that her partner was struggling in coming to grips with her diagnosis, the couple chose to educate themselves about Alzheimer's disease and how to prepare for the tough road which lay ahead.

- I think the first thing that I wanted to do was to learn everything that I could about Alzheimer's.

I went to the library and I think I took out every book that I could find.

I got on the websites for the Alzheimer's association and for DASNI, which is Dementia Advocacy and Support Network International.

I got on there and began meeting with people who are professional, educated people who are out advocating for those with Alzheimer's and who are living with it.

So I was going through all of that learning process first.

And then Betsy and I decided that, well, I guess I decided first, I wanted to tell everyone, even though there's a stigma with Alzheimer's.

I needed to be open, it couldn't be so something that I was just pretending about.

And I began the process of telling my family which was hard, telling friends, speaking at a church service and sharing.

- [Suzanne] Emotions are an important aspect of this disease to try to understand and manage, but there are other details to consider such as financial planning.

- Thinking about finances, thinking about legal issues, doing whatever planning that we can.

And one of my big concerns was that Betsy might really be in the poor house.

If we didn't think about how to protect her and protect us.

And we called a friend who is a lawyer, and she referred us to an elder care lawyer in Portland, who was just wonderful.

And we went in and we did all of those things which we should have had done anyway, you know, that everyone always says they're going to do.

And, and you put it off until something pushes you but we got our wills made.

And we did the power of attorney and the health attorney, whatever, all those documents are called.

We went to the cemetery, you passed Laurel Cemetery on your way here, which is a beautiful, almost almost like an Arboretum.

Two weeks after we bought the plot and made the plans for the engraving, I took a walk in the cemetery and went by the site and there was the stone erected already with our names.

Obviously not death dates on it, but our names there and the engraving we had put on it.

A line from a song that's very important to us, "How deeply you're connected to my soul."

♪ How could it anyone fail to notice ♪ ♪ that your loving is a miracle ♪ ♪ How deeply you're connected to my soul ♪ (gentle guitar plays) - I wanted to paint my feelings about Alzheimer's.

I wanted to record the journey.

I'm also doing that with writing but it seems as if somehow I can get more emotional.

I can go deeper with the images than I can with the words.

I've done a whole lot of paintings that have bubbles in them, and this is the only one that's a group bubble.

Each of the bubbles is representative of someone in my support group.

And each bubble is fragile.

Each life is for fragile, but in the coming together, we're in the light.

We're gaining strength from one another and support from one another.

And that's what I wanted to signify.

I've discovered a lot of creativity with my painting.

I have creative ideas.

I don't paint just landscapes and still lifes.

I have to paint this journey with Alzheimer's.

I have to paint images that are personally meaningful to me.

And so I've got the creative ideas for it, I'm in the process of learning the skills.

So this is navigating the tangled neuron forest.

It's sort of my representation of life, a little further on when I'm in a later stage of dementia and just trying to find my way among all those plaques and tangles.

Even though, in some ways, that's a little sadder and more challenging, I still see it as hopeful because it's working to make my way with whatever I've got going for me.

All any of us ever has is this moment, this day.

And I intend to live it, you know the very best that I can and to discover whatever gifts there are in this for me and there are gifts.

And it's okay, you know, this is this is my path, and I wanna walk it the best I can.

♪ Well if you want to sing out sing out ♪ ♪ And if you want to be free be free ♪ ♪ Cause there's a million things to be ♪ ♪ You know that there are ♪ And if you want to live high live high ♪ ♪ And if you want to live low live low ♪ ♪ Cause there's a million ways to go ♪ ♪ You know that there are ♪ You can do what you want ♪ The opportunities are ♪ And if you find a new way ♪ That you can do it today ♪ That you can make it all true ♪ And you can make it.

And do you see how it's easy.

How you only need to know well, if you.

Want to say yes, say yes.

And if you want to say no.