UPMC HealthBeat podcast on dementia and grief.

– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgments when advising their patients. Patients in need of medical care should consult their personal care provider. It is an issue so many are facing these days: feelings of grief and loss after being diagnosed or having a loved one diagnosed with dementia. Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat Podcast. And joining us right now is Elizabeth Schandelmeier. She is a bereavement coordinator and counselor with UPMC Family Hospice. Thank you so much for joining us.

– It’s always a pleasure. Thank you for having me.

– So, so many families are facing this, and it’s become such a topic, there’s actually a term for it now: “twilight grief.” Tell me what that means.

– Well, twilight grief is actually something that has come out of some of the previous discussions that we’ve had. We’ve talked about folks living with chronic illness, and from the time sort of diagnosis through end of life, and that can be a period of years, long years. And, I described it before as this sort of gray area, but I realized that it’s not really gray. It’s not gray, it’s not flat. It’s actually full of a lot of life. And, things are changing and shifting through that time, but there’s lots of moments of beauty and joy. So, while it can be melancholy knowing that the person that you’re caring for, that their daylight is starting to fade, it’s also still a period of time when you can appreciate the moments of sort of little magical bits that can come up.

– So, that sounds so hopeful to hear you say that. But, I’m thinking at the beginning of a diagnosis, so much is going to change. And, so much does change, not only for the individual, but for their families. And, so, talk about what that might look like.

– Indeed. Well, there’s a lot of things that have to be taken care of. And there’s, oftentimes with a dementia diagnosis, it begins after a person has recognized that whether it’s the person themselves or the family around them, that they’re perhaps being a little bit more forgetful than they had been before, or not quite able to take care of themselves in the same way that they might have been able to before. And, so, you go and sort of get things checked out, and then you have this diagnosis, and what do you do with that from there? It’s not always something that you have to do a whole lot about at the beginning, but over time, as a person, as their capabilities begin to fade, there can be a lot of changes that have to happen in terms of taking care of this person and making sure that they’re safe. Safety is always the priority. And, so, creating a situation, whether it’s caring for them at home or finding the right placement for them, these are things that can lead to a lot of chaos and turmoil in a family.

– Chaos and turmoil. Not just the emotional toll of knowing that you need to face this, but also in the day-to-day. Finances, if you have to leave a job because you’re the person diagnosed, or now you need to be home to care for this person. Lots of stressors there as well.

– Absolutely. Perhaps you were just about to receive that big promotion at work, and now you’re needing to decide whether or not do you continue with your career, or do you give up your job altogether to stay home and care for another person? Maybe you’re about to retire, and you and your spouse were going to take a world trip. And, now, all of a sudden, you find that you don’t really have the kinds of freedoms that you had before. So, your own aspirations, if you’re having to give up your work, your finances are definitely impacted. And I don’t know a whole lot of people who can simply give up work and not have to figure out how to accommodate that loss of finances. So, there’s just a lot of areas in people’s lives where their personal freedom, their aspirations, their ideas, their hopes for their own future, as well as the future of the person with dementia, that those things shift and change.

– And we have been doing this whole series on grief and loss, and you always say it’s important to normalize it. Is that the starting point? I mean, what do you say to people about the starting point? If you’re dealing with this in your family, how do you get to those points where there are all these bright spots?

– Well, the bright spots happen naturally. You just have to be open to them. It is a matter of, I think, also being able to find language to talk about the experience that you’re having. We’re so afraid of using the word “grief” when we’re talking about a person who’s living, and who will have a long time to live, perhaps. So it’s really not about sort of anticipatory grief, which we’ve talked about before, which is when you’re anticipating a person’s death. We’re not necessarily anticipating to their death. It may be, you know, five, 10 years from this point. And, so, it is beginning to recognize the ways in which your life is changing, your relationship is changing, your identity is changing, and being OK with the idea that it can both be changing and be OK at the same time. A lot of times, we use the word “but” instead of “and,” and we might say things like, “Well, I’m really happy to be taking care of my mother, but it really is hard.” And the truth is that it’s both of those things, and this is what makes grief, in my opinion, a fairly unique experience, human experience, where it’s all of the different emotions wrapped up, and we tend to want to reject the ones that feel negative because we wonder what that means about ourselves as a person. If I’m a person, if I say I’m overwhelmed by caring for my mother, what kind of daughter am I? Well, you’re a wonderful daughter. You’re there, you’re overwhelmed. It’s OK. It’s just a feeling. But being able to accept those parts of yourself, of the person who’s changing, and of your changing circumstances as well, I think that helps to open space to finding the moments of joy and beauty.

– And, so, how important is it, especially as a caretaker, to talk to someone? What sort of things do you want them to be thinking about?

– They really do need to be thinking about themselves because the person who they’re caring for, they are at the center. They will get the care that they need. They have the professionals, they have their medical team, they have you. And, so, really, what gets forgotten is the caretaker themselves. And a lot of times, they forget that they’re important, too, and that their health and well-being is important. Both as a function of being a caretaker – you need to be healthy in order to take care of another person – but also because they matter. And, just because you are giving up certain parts of your life doesn’t mean you cease to be an important human being. One thing I really like to remind people is that self-care is not the same as self-improvement. So, when we’re moving through, you know, this sort of idea of self-care, so often people set these goals for themselves that may or may not be realistic.

– Like, what’s an example?

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