Episode 5: Grief as a Healing Gift - Family Caregivers BC

Caregivers Out Loud

13 million Canadians or nearly half of the total population have provided care at some point in their lives. Yet caregiving may be a new term for many people. And often, unpaid caregivers do not identify with this title, as they feel it is part of their relationship with family or friends.

In today’s episode, we speak with Pat, who acknowledges that she was initially unfamiliar with the term caregiver, but learned more about this important role as she supported her husband, also named Pat, through his journey with Parkinson’s Disease and dementia.

Pat was engaged in a caregiver “learning process”, where she listened to her husband to better understand the effects of Parkinson’s Disease in his daily life. Because of the value of their partnership, Pat’s relationship with her husband during his changing health conditions was sustained through humour and care.

You will gain insight into her caregiving journey, awareness of the caregiving role, and the unfolding responsibilities; including end of life care and her current caregiving stages of grief, bereavement, and honouring her husband and life-partner.

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Highlights

Caregiving was a new term for Pat and then she was full-in caregiving mode.
Supporting her husband with humour and care for their relationship was very apparent.
Loss and grief – knowing he is still there with her by showing up in signs or thoughts.
Giving back by supporting others in a caregiver support group.

Quotes

I was just so aware of the fact that I was 100% myself. But there was 50% of him missing. And I had to live that extra 50% of him missing in order for us to survive this journey. And it was very difficult at times, there’s no question. But that’s the way I thought of it. Pat

I look at his chair every day and you know, I’ll, we’ll be watching or I’ll be watching TV and you know, something will come on that will be familiar or whatever. And I just automatically look over at his chair about to say, Oh, can you believe that? And I know he is there. Pat

Over time and particularly even after Pat died after he was no longer in the home with you. Your partnership had been a blessing, that there was something about the way in which you partnered him right to the end of his life that in spite of some of the challenges became a blessing. Bill Israel

One main thing that this whole experience has done for me is that it has really given me compassion for people who have shortcomings, dementia, disabilities, whatever. It has just given me a world of really and truly understanding when a human being is not 100%. They could be 50% or 70%, but it just opened a whole world for me and it’s something that will always be a part of my life. Pat

Pat’s approach to her caregiving as a partnership is a testament to the notion that, while death ends a life, it does not end a relationship. This partnership approach actually enlarged her sense of being a more compassionate person following her husband’s death. Bill Israel

Resources on Grief and Loss

Article: The Grief Response, By Janet McLean:
Webinars: Caregiver Loss and Grief and Navigating End of Life, A Road Map for Caregivers

Links Mentioned

Janet Fast, “Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges,” Institute for Research on Public Policy Study (December 2015).
Family Caregivers of BC Caregiver Support Groups
Parkinson Society BC Resources
Caregiver Support Line, Toll-Free in BC: 1-877-520-3267.

Connect With Us!

Family Caregivers of BC Website
Telephone: (250) 384-0408
Toll-Free Line Within BC: 1-877-520-3267
Fax (250) 361-2660
Email: info@familycaregiversbc.ca

Social Media

Thank You

BC Ministry of Health- Patients as Partners Initiative
Organized Sound Productions

Transcript

Bill

When you and Pat first got his diagnosis, what occurred to you at that time about the prospect for you becoming his caregiver? I know you weren’t even familiar with the term caregiver at the time.

Pat

Mm hmm. The role of caregiving was in attending a caregiver’s support group with the Society of BC for Parkinson’s. In fact, when we were at meetings at these support meetings, we would go around the table and introduce ourselves. And my husband Pat would say, you know, my name is Pat, and I have Parkinson’s. When it came to my turn, I would say, I am Pat’s care partner. So caregiver was not even in the vocabulary at that time. It was care partner.

Bill

You also made a remark in one of our conversations, where you talked about your need to become 150% of who you were. Because you had to make up for the 50% that he was now missing.

Pat

Mm hmm. I was just so aware of the fact that I was 100% myself. But there was 50% of him missing. And I had to live that extra 50% of him missing in order for us to survive this journey. And it was very difficult at times, there’s no question. But that’s the way I thought of it. And that was very helpful for me to plug along with the journey thinking, Okay, well, I’m one half of me and then I’m half of him and so be it.

Bill

Wow. That’s so beautiful really. What did that partnership mean? Especially as Pat’s capacity began to diminish a little bit, talk a little bit about the communications you too had even about his, his illness. How did that work for the two of you?

Pat

Well, he was very open in describing where his mind was, and how he was being affected by this disease Parkinson’s. At one time, he would make breakfast every morning. And he explained to me exactly how making breakfast in his world was. From going through the entrance of the kitchen and how he had to be mindful of not banging into the wall. Taking out the coffee filters from a box, which none of us would think twice about, but it was a huge thing for him to separate one filter from another to get it out of the box and put it into the coffee machine. And it was a 45 minute description of how he managed to get washed and get berries in a bowl and pour some cereal or toast and make the coffee. It was so enlightening for me. He allowed me to walk in his shoes.

Pat was so intelligent and so aware that he knew what his dementia was. He knew when he did things incorrectly or he would laugh at himself constantly. He’d say, Oh, look, what I did. I called it this, or I called it that. He would go to the front door of our apartment and I’d say, what, what are you doing? Where are you going? And he say, Oh, well, I’m looking for my jacket. And then I would just laugh and say, well, you’re not going to find your jacket out there. But let me know if you do. And we’d both have a really good chuckle over it. Again, he was aware that Oh, yes, I went to the wrong door.

Bill

And I recall a humorous anecdote you were relating about the birds. Can you tell that story? It’s really sweet.

Pat

We’ve been living in this apartment for 15 years and the only birds we ever had come visit us were pigeons, are not appreciated. But since Pat’s passing, I’ve had little chickadees, I’ve had crows, Blue Jays, I’ve never seen these birds before. And I was joking and I said, you know, one day, an eagle flew by and I thought, Oh, my goodness. I spent a lot of money. I guess the eagle’s come to remind me, Pat is still with us. Little birds are OK.

Bill

A big bird. Yeah, the big bird showed up.

Pat

A big bird. Big money.

Bill

Yeah, no kidding. Oh, that’s, that’s such a lovely way to think about it. Because we don’t always have a language for this, but he’s still very close in that sense.

Pat

Absolutely. And I look at his chair every day and you know, I’ll, we’ll be watching or I’ll be watching TV and you know, something will come on that will be familiar or whatever. And I just automatically look over at his chair about to say, Oh, can you believe that? And I know he is there. I never sit in that chair. I never did and I don’t think I’ll start any time soon.

Bill

So lovely. Over time and particularly even after Pat died after he was no longer in the home with you. Your partnership had been a blessing, that there was something about the way in which you partnered him right to the end of his life that in spite of some of the challenges became a blessing. So how was it that you looking after him the way in which you did right till the end of his life, enabled you then after he was gone, to begin to move on with your life?

Pat

Well, I think one main thing that this whole experience has done for me is that it has really given me compassion for people who have shortcomings, dementia, disabilities, whatever. It has just given me a world of really and truly understanding when a human being is not 100%. They could be 50% or 70%, but it just opened a whole world for me and it’s something that will always be a part of my life. There’s no question. And it’s as if I you know was was given some kind of training for, you know, this attitude that I hold or feeling that I hold for other people. It’s made me a better person, quite honestly.

Bill

Wow. What a lovely thing to think about it and a way of honoring Pat. Who he was and with you in your partnership. So you also as I recall, mentioned that you attend some of the association meetings with the Parkinson people or with the dementia Association. Are you doing that?

Pat

Well, actually, I have facilitated a support group for people with Parkinson’s for over five years. It started with five of us and now it’s grown to 24. So many of these people, I have either gone out for walks with coffee, whatever, you know, there’s maybe 10 or 15 of them that I’m always in close contact with and I call them or they call me. And it’s a whole community. It really is. And we understand each other because we’ve walked in each other’s shoes. So it’s a huge difference.

Bill

No kidding. For you and for them.

Pat

Yeah. And it’s interesting, because in this group, there was one meeting, this is before Pat died. We had one meeting and there were three members who had lost their spouses or mom actually, for over a year, and they were still coming to the meetings. So it really described to me that the journey of Parkinson’s or you know, any other disease doesn’t end when a person dies, and goes on.

Bill.

With the focus being on caregiver well-being, Family Caregivers of BC offers Caregiver Support Groups that are non disease-specific. You can visit our website at http://www.FamilyCaregiversBC.ca and view the calendar for our current caregiver support groups.

Family Caregivers of BC also has a toll-free caregiver support line where you can talk to one of our knowledgeable support staff. They can provide you with caregiver resources and suggestions for disease specific resources and support groups. The toll-free number is 1-877-520-3267.

Pat

To anybody out there that’s caregiving, that is really exhausted and just at the end of their rope, which is totally understandable, please try and see the positive side, because there are many positive sides. But sometimes, like peeling an onion, you really, really have to look for it. But there are a lot of gifts in terms of caregiving, and I would just encourage people to hold those close to their heart.

Bill

Wow. Oh, thank you so much. That’s a beautiful way to close this interview because it’s so true. That person is still a person.

Pat

Absolutely. Absolutely. And it can happen to any of us. The way we are today is not necessarily going to be that way tomorrow.