Caregivers Out Loud
When we think about grief, we often think of it as something that happens following a death. However, grief can begin long before death arrives. The grieving process can start as soon as a caregiver is aware that death is a likelihood or once death is on the horizon. Many caregivers dealing with an impending death will experience overwhelm, anxiety and dread. As well, before the death of a care recipient, caregivers grieve the loss of the person’s abilities and independence, loss of their cognitive abilities, loss of future dreams, loss of stability and the loss of their identity and the caregivers. Anticipatory loss is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
Courtney Doherty is a registered clinical counsellor with the British Columbia Association of Clinical Counsellors. She currently works with Parkinson Society British Columbia, where she helped launch the counselling program in 2015. Today we talk about different forms and stages of loss and grief. And we talk about how a caregiver can plan for loss.
About Courtney Doherty
Courtney is a Registered Clinical Counsellor (RCC) with the British Columbia Association of Clinical Counsellors (BCACC), her personal connection to Parkinson’s disease (PD) brought her to Parkinson Society British Columbia (PSBC) in 2013 and she helped launched the counselling program there in 2015. Courtney’s father was diagnosed with PD over 15 years ago and he underwent Deep Brain Stimulation surgery in 2013, which has been a successful form of treatment for him. Believing that every individual has the potential to lead a happy and fulfilling life regardless of challenges faced, she brings a unique perspective and skill set to PSBC. Courtney also has a private practice where she works with a variety of clients including depression, anxiety and trauma.
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We all change, Parkinson’s or no Parkinson’s, so the ambiguous loss that I was referring to is…it was a term coined by Pauline Boss and she refers to it as, so it’s either somebody who is psychologically absent, but still physically present or the reverse physically absent but psychologically present. So we get a mix of both if people are experiencing cognitive decline and maybe forms of dementia, but they’re still physically able. So they’re physically here, but the person they were, their mind, their you know, whatever you knew them for, it’s not the same thing, so that is loss. And then likewise you know if they physically are not capable maybe they’re in a wheelchair, but they’re still cognitively apt, you know it can go either way. Courntey
This person is still alive but a different person. And I as a caregiver have to stay in my partnership with whoever this is. Bill
- Ambiguous Loss and Anticipatory loss.
- Limbo or frozen grief process.
- The big role of a caregiver with the preparation of loss (logistics), identity change, and learning a new life (changes of emotions).
- Self-awareness of feeling the feelings and making it manageable.
Anticipatory Grief Package: Information for Patients and Families
- Family Caregivers of BC Caregiver Support Groups
- Parkinson Society BC Resources
- Caregiver Support Line, Toll-Free in BC: 1-877-520-3267.
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When we think about grief, we often think of it as something that happens after a death. However, grief can begin long before death arrives. The grieving process can start as soon as a caregiver is aware that death is a likelihood or once death is on the horizon. Although this is different from the grief that follows a death of the person you are caregiving for, anticipatory grief has many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness and depression.
Dealing with impending death will experience overwhelm, anxiety and dread. As well, before the death of the person you are caring for, caregivers grieve the loss of the person’s abilities and independence, loss of their cognitive abilities, loss of future dreams, loss of stability and the loss of their identity and the caregivers. Anticipatory loss is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
Let’s hear the perspective from Courtney Doherty, a registered clinical counsellor with the British Columbia Association of Clinical Counsellors. Courtney currently works with Parkinson Society British Columbia, where she helped launch the counselling program in 2015. Today, we talk about different forms, and stages of loss and grief. AND we talk about how a caregiver can plan for loss.
I think we often speak of loss when we’re dealing with the caregiver primarily, it’s an obvious. There’s sort of two terms that we use. One is ambiguous loss and the other is anticipatory loss. And so what that means is with Parkinson’s people tend to live for a long time. It’s not sort of, you know, true Parkinson’s is a slowly progressive disease so you know some people are caring for their loved ones for 20 plus years. So with that, they’re not caring for the same person though for those 20 years. That person changes. And you know of course we all change, Parkinson’s or no Parkinson’s, so the ambiguous loss that I was referring to is. It was a term coined by Pauline boss and she refers to it as, so it’s either somebody who is psychologically absent, but still physically present or the reverse physically absent but psychologically present. So we get a mix of both if people are experiencing cognitive decline and maybe forms of dementia, but they’re still physically able. So they’re physically here, but the person they were, their mind, their you know, whatever you knew them for, it’s not the same thing, so that is loss. And then likewise you know if they physically are not capable maybe they’re in a wheelchair, but they’re still cognitively apt, you know it can go either way. That’s also a huge form of loss and so form of loss for the individual actually afflicted with Parkinson’s but likewise for the care partners surrounding them. So we say you know you can almost get stuck in this limbo, in this like frozen grief process because of course when you lose someone actually when they pass on. That’s a huge loss but we often hear it can also be a big relief sometimes and you can actually process the loss and move forward and you know make new meaning to your life and so very, very complex.
But even as you mention, they may still be alive, but they’re not quite the person they were, so how do I now relate? How do I transit this process?
Exactly. And how do I deal with every day with this heaviness that’s weighing on me but you can’t really move through the grief because you’re still dealing with them every day you’re still, or not but just as an example. And you’re still really entrenched in it and it’s still probably really difficult and I find lots of emotions weighing from anger, guilt, shame to, you know, sadness, of course, there’s a whole range of emotions that come with that.
Sure and it’s a transition of a partnership. There’s two people trying to manage this process. Talk a little bit about that partnership transition. This person is still alive but a different person. And I as a caregiver have to stay in my partnership with whoever this is.
Yeah. So that’s a tricky one. I mean, some people say, caregivers that I work for sort of feel like they naturally fall into a role of a caregiver, and they feel like they can take on that role whereas others, let’s say their partner was recently diagnosed, they say I’m not a caregiver like I don’t know how to do this. So imagine if you see yourself as a caregiver eventually versus not, that’s going to bring a whole different set of, you know.
Expectations, thank you. Even if you do see yourself falling into that role, it does not go without challenges and then, and then not to mention, you know, it really depends on your communication skills with your partner which is every relationship, how you communicate. But if the person that you’re caring for, let’s say doesn’t want help or is not very receiving of your help and is angry and not dealing with their own grief around, you know their diagnosis, then that’s going to cause a whole slew which it does, I’ve seen that very much. Whereas yeah if they can show gratitude and have empathy and they can sort of work together. That’s something I work on with clients is to really try and understand what’s going on for themselves individually to then be able to come together to create the best quality of life possible for both of you.
Sure. There is both a psychological, emotional, spiritual companionship that’s at stake here you know I have this responsibility, quote unquote, to be a caregiver. That’s also layered with some other what we might call tasks of being a planner and an executor, and the glue for the family. So, how does a caregiver begin to navigate those layers?
Exactly. That’s like a big burden to carry right all of those titles, you just mentioned, that’s a lot to, to put on the shoulders of one person who may also be carrying day in and day out for somebody whose needs maybe they’re dependent on you. You know, those are absolute things that do happen and so what I’m really a huge advocate about is, it sounds so easy to say but they do need to reach out for help, they can’t possibly do it all themselves. Letting go of some of that control which I know can be really hard and for people to ask for some help. But it’s necessary, it’s impossible to do it all by yourself. To do it well. And so I would work with them to sort of see who can help with this little area and can we get some help there and can you delegate to that person, so that they’re not carrying all the weight of all of that.
Wow. So you not only have to be present for the caregiver, but be available for bits and pieces of advice and some support and direction, even prior to say the passing of the care receiver. So say a little bit then if you would Courtney about how a caregiver begins to prepare for, after the death of the care recipient that now there’s a whole different transition here that has to take place.
Yeah you know that is such a personal thing, you know whether somebody is really prepared before somebody passes or not but from what we can do and what we know we can take on is, I really think in terms of like logistics, what can you kind of learn that this person does now that once they’re gone you’ll be in charge of so even, and I say this because I’ve often met with partners who have had their spouses pass and they say, I had to learn everything. I didn’t know how to pay the bills, I didn’t know how to switch all the banking over to their name and you know. So for me I really preemptively want people to have those kinds of things start to be put into place or at least have some supports in place to be able to do that soon. So those little logistics, those things can become huge stressors, even though they seems and sounds so simple, so little things like that. And other things you know once that that role does change your identity changes right so you’re no longer caring for somebody and that’s huge. And everything from your sleep patterns might change. Now you might be sleeping better because you’re not interrupted every night, which then you may feel sad about that so your eating patterns may change or maybe eating for one now. Your activities every day may change. The bond you have with other family members may change so there’s a whole lot of change in identity that can happen once the caregiver loses the one they’re caring for. And if they eventually become someone that needs care in their life, care receiver. So going from I think you said caregiver to care receiver. That can be a whole spectrum as well I think on the one hand, you know it would probably make you feel more empathic for the person caring for you because you’ve been in that position.
Certainly. Yeah, we’ve had a number of caregivers who say exactly that, you know, that’s all of a sudden, the shoe’s on the other foot here. So I see your role and you can clarify for me, as helping them navigate both the spiritual, emotional aspect of that, inwardly, while at the same time paying attention to some of the things that you could in fact do begin to prepare for and this business of learning a new life really is what they’re doing following the death of the care recipient. Still, is a role for you it’s probably a number of people who come to see you for just that reason, you know, what do I do now. Could you speak a little bit to that about how people began to find a new life as it were.
Yeah, absolutely. And so, it’s such a personal journey I will start with saying. There is no sort of written book that says you know, first you can do A, B, C, then D. And it really depends on the individual, their beliefs, their behaviors, the way they are in their life, how are they doing, you know, aside from being the caregiver or, you know, that has now moved on to not caring for somebody. Maybe it’s a relief like we talked about. Maybe it is a bit of a relief and they finally feel like they can stand on their own two feet and make new memories and move on. And that’s not a linear process so not to say that they’re great now and they can sort of feel relieved and move on. No, it’ll ebb and flow with several emotions. But then on the other side people can feel very lost, extremely sad, and everything that comes with grief which like we said earlier as well as a whole range of emotions from guilt, shame to anger to sadness, like I said to, you know, joy. So I think the number one thing and I’ll say that again is really understanding what is going on for you. So as an individual what my client is going through personally and really understanding themselves so that they’re not sort of masking anything they’re not pretending everything is okay when they’re not so feeling their feelings I say.
An important permission really. Yeah ‘cuz especially if it’s a grief or an anger sometimes, tried to disguise that or hide it just adds to a sense of loneliness and further loss really.
You got it, yeah, and I think that people often try to hide it or you know feel like they have control so they sweep it under the rug kind of thing but it actually has more control and power over us that way. So instead I think you’ve probably heard the referral to grief as it comes and goes in waves. Riding that wave, some waves are massive and feel like they can kill you if you’ve been in an actual wave, and can actually, and then others are smaller but just sort of knowing that it comes to a peak, and then it goes away. So when I say feeling your feelings, we’re not used to that. It’s not something we were taught. I hope the younger generation, you know, my children and my children’s will learn to acknowledge their feelings and you know not just say, oh, everything’s okay because that will. It’s a lie and it’s not going to allow us to move on and so number one understanding yourself and really understanding your feelings and going through them so then you can really understand where you’re at, you know, some days you’ll feel great and like you can, pick up a new activity and meet new friends, and then other days you might be sad and stuck in some sorrow and that’s okay. Letting it ebb and flow like the waves.
Family Caregivers of BC supports caregivers with a non-disease specific approach. However, our Caregiver Support Team can provide you with resources and referrals to disease specific organizations like Parkinson Society BC.
We are very thankful to Courtney for sharing her counselling expertise and experience with us AND also supporting family caregivers like you at Parkinson Society BC.
If you are a caregiver needing support, please call our BC Caregiver Support Line at 1-877-520-32-67. Our team is experienced in dealing with caregiver situations like the stories we heard from Courtney today. Connect with us to continue the conversation.
The future is not promised to any of us so Parkinson’s or no Parkinson’s we’re all headed to the same playground. Yeah, kind of just have to remember and it’s a it’s a practice. You know, when the thoughts are getting too much in the future and worried and the what if, what if, bringing it back to today and what’s happening today and today I’m okay and today I can get through right now this moment. And so, just a reminder to bring those thoughts back to what is present rather than what if this happens.