Video series: Dementia and Caregiving

Hear from family caregivers as they share their personal experiences and talk about the importance of their social connections.

Ralph and Eileen

Ralph discusses the loneliness caregivers sometimes experience.

Ralph and Eileen - Transcript

(Almost 500,000 Canadians provide care and support to family or friends with dementia.)

(Ralph and Eileen - The Loneliness of Caregiving)

Ralph Scandiffio:
Home is where Eileen feels safest. That’s this is where her comfort is.

As she more and more loses recent memory and gets further and further away, her main concern here in her fifth, sixth year of dementia, she doesn’t recognize this as a home.

My name is Ralph Scandiffio. I have been a caregiver for my wife Eileen for the past five and a half years.

My concerns now as a caregiver are mostly how to maintain my wife’s quality of life.

We’re both lonely just in a caregiver and care recipient relationship essentially.

Dr. Joel Sadavoy (Geriatric Psychiatrist, Mount Sinai Hospital, Toronto):
The caregiver starts to see a vibrant, engaged, warm, caring, loving, capable, dynamic person gradually recede into a, a shell in which they, they begin to avoid social interaction.

It’s not the loneliness of being solitary, but it’s the loneliness of waking up with, sitting beside somebody, eating with someone who has nothing to say.

Caregivers talk about that experience of, of this disease creeping up, the impact of it creeping up. And without really realizing it, life has transformed.

Ralph Scandiffio:
I think that caregivers who, who are new to this activity should learn to take care of themselves. It’s very helpful if you can find a network of friends who help. And I’ve just recently realized that the new friends are those who are associated with caregiving. They’re people in the support group at the Alzheimer’s Society. And these are my real, new friends.

I had no idea how difficult it would be.

You learn how strong you are and you learn how vulnerable you are and you’re sometimes fragile.

Dr. Joel Sadavoy (Geriatric Psychiatrist, Mount Sinai Hospital, Toronto):
So guiding the caregiver to understand their own particular situation and then helping them figure out what are the specific things that they need and when are they going to need it during the course of the disease is a critical element of counselling.

What’s missing in that array of services is the opportunity for the caregiver to do what we’ve come to understand as critical for them and that is to engage with others in a, in a deeper way so that there’s a, a true sharing of knowledge and experience, a sense that they are with others who are, who are struggling with this.

Ralph Scandiffio:
I can’t add any quality to her life.

One of the important things I think in caregiving is to have the, have the most valuable emotional attitude we’ll call it. And that’s compassion.

But you have to train yourself to maintain that compassion.

(Seek out resources that can help you.)

(For more information: Canada.ca/Seniors)

(Canada)

Joyce and Bob

Joyce, who cares for her husband Bob, tells us how she does it.

Joyce and Bob - Transcript

(Within 10 years, dementia rates in Canada will double.)

(Within 25 years, rates will triple.)

(Joyce and Bob - The Loneliness of Caregiving)

Joyce McInnis:
We will be married 60 years next April.

He fished. He hunted. He volunteered. And he loved working around with his hands—he could do anything.

Lorraine McInnis:
Gosh, it is a long road and especially with dad having been diagnosed, well I guess eight years ago, but all of us as family members knew that there were problems, there were issues like that things weren’t adding up for such a long time.

Joyce:
They have had to come to the realization that dad knows who they are in that they belong to him, but he doesn’t know their names.

I’m Joyce McInnis.

I knew the end was coming for him to live at home, but I, I dragged my feet about putting him on the list for placement. And then you, the caregiver, takes on the extra load that the person would have done. So… and it affects the whole family.

Lorraine:
With there being four of us, with our own relationship as I say, we each bring a different ability to helping.

Joyce:
In hindsight now, I realized I should have been able to have somebody relieve me a bit.

Lorraine:
We say mom, you’re looking tired. Mom, maybe you shouldn’t do that right now.

But you have to figure out how you can rejuvenate yourself because you got to come back at it.

Dr. Joel Sadavoy (Geriatric Psychiatrist, Mount Sinai Hospital, Toronto):
Caregivers often feel that they’re in this alone.

So there is, there is actually some guilt that caregivers experience in seeking help. Not just because they feel they have to do it themselves, because many people have a heavy sense of responsibility about what they’re supposed to do with this disease—this is my job, this is my husband, this is my parent, I have to do this and nobody else can do it.

My burden is now an entirely different sense of who I am in this relationship. But I am still a wife. That’s my, that’s my relationship to my husband.

Joyce McInnis:
Although I was doing everything pretty much before he went, physically…I don’t want to say I collapsed. I didn’t collapse. But I slept day and night.

And I couldn’t figure out what was wrong with me. I just did not know what was wrong with me, and I was angry with myself and I thought, you know, you have time to do things now and, and I cried. And, so I thought well, I’ve got to do something.

Dr. Joel Sadavoy (Geriatric Psychiatrist, Mount Sinai Hospital, Toronto):
So it’s not just that people feel overwhelmed; their bodies also react.

And it’s helping people deal with loss or grief or guilt or anger or resentment or whatever the feelings are.

Joyce McInnis:
I think if you find yourself in that state, and I think you have to realize it yourself, I don’t think anybody else can tell you, get to counselling. It’s been a saviour for me. It really has.

I still have Bob, although not the way I would like him. And it’s hard. And yet I could never, ever in my wildest dreams, see another person in Bob’s place.

(Reach out. Get support from your family, friends and community.)

(For more information: Canada.ca/Seniors)

(Canada)

Ken and Nada

As a full time caregiver for his wife Nada, Ken reminds us to balance our life and to take care of ourselves.

Ken and Nada - Transcript

(One in every 1,000 people will develop dementia before the age of 65.)

(Ken and Nada - The Loneliness of Caregiving)

Ken Wong:
Nada was diagnosed to have coriobasal frontotemporal dementia at the age of 46 when our twins were 16 years old.

Some days are very tough to get through. The biggest problem of this disease is the behavioural issues.

My name is Ken Wong. I’m a full‑time caregiver for my wife Nada 24/7 since 2008.

I sleep on an air mattress beside her bed and to keep her company at night, to hear my voice, to make sure she feels secure and to always tell her she is loved.

Caregiving is a complex role full of human drama and emotions. Sometimes you experience joy, loneliness, sadness, you feel frustration, you feel that you’ve failed, you feel guilty, you feel grief.

She understands, she feels, so it’s very important to get to the point that you accept the situation, live in the moment and enjoy it. If you don’t, you won’t last. And it’s also very important that as a caregiver you need to balance your life. You need to not feel guilty asking for help or it feels like a weakness.

Mary E. Schulz (Director of Education, Alzheimer's Society of Canada):
This is a group of conditions that are overwhelming in the extreme, and they go on often for very long periods of time, with increasing problems as time goes on.

The first step is not only recognizing you need help, but giving yourself permission, that it is not only okay, but it is a good thing to ask for help early and often.

And what we hear from families and from people diagnosed themselves is they go through a period where they often will withdraw from society, and by that I mean they’ll stop going to their book club, or when their friends call and say do you want to go to a movie they say I don’t think I can, and they may very well not tell them why.

Ken Wong:
The greatest challenge is the loneliness.

Being a caregiver, you have to balance your life.

So whatever that balance is—10 percent, 5 percent or it could be as high as 50 percent—you need time for yourself. It’s OK to take care of yourself, it’s not a sign of weakness.

My hobby was kind of, because I’m an engineer, I’d go take my car apart, put it back together. And the social worker that comes, I said, that’s my quiet time.

Mary E. Schulz (Director of Education, Alzheimer's Society of Canada):
We know that caregiving for someone with dementia is strenuous in a way that a lot of other caregiving is not.

And there’s sort of a tough love element to this, that as guilt-ridden as you may be, as exhausted as you may feel, you do need to keep that dinner date or go out to the movies or do whatever, even if the last thing that you want to do is get dressed up and go out the door, because that’s the way you’re going to keep those relationships intact.

Ken Wong:
This disease is such a long and terrible disease. It’s a long goodbye.

It’s a terminal illness, you know what the outcome is, and it’s not an easy solution. It’s a solution that’s going to test your humanity. It’s going to test your inner soul. It’s going to test who you are. And we can be, we all have the courage, we’re all able to love and be selfless, we can all do this job. As a whole, society itself can benefit from it.

(Remember to take time for yourself.)

(For more information: Canada.ca/Seniors)

(Canada)

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