Episode 2: Anticipatory Grief and Small Victories

You're at work and your colleagues are gearing up for the office holiday party. Or you're in a meeting when your supervisor excitedly asks everyone to share their holiday plans.

You're suddenly overcome by a wave of sadness as you think about your loved one in hospice and how the holidays will never be the same once they're gone. Or - worse yet - this is your first holiday without them.  You dread sharing how you really feel now that grief has entered the picture, and the last thing on your mind is the holiday spirit.

I'm Zuri Parks, and this is chaotic.

Hello caregivers. Welcome to episode two of this is chaotic. I'm your host, Zuri Parks, and I thank you for joining me. On today's episode, I want to do a holiday check-in and discuss small victories. And yes, I know what you're thinking - it's the end of January. Isn't that a bit late for a holiday check-in? And, yes, I had hoped on getting this episode out at the top of the year, at the beginning of the month, but if caregiving has taught me nothing else it's that things don't always go according to plan. However, technically, it is still the holiday season because the Lunar New Year isn't until tomorrow, so there you have it. Better late than never. So we're going to proceed as planned, because I wanted to touch on something that affects us every day, but especially around the holiday season, and then we will move on to small victories.

So, this episode of This is Chaotic will be a little longer than usual as I want to get some housekeeping out of the way by telling you all a little bit more about myself and why I decided to start this podcast. The reason that I wanted to do a podcast about caregiving was I feel like it's something that we don't really talk about enough, and everyone has questions who is new to the caregiving struggle. We all have questions. There's a lot that we don't know when it's our first time having to take care of a loved one with a long-term or terminal illness, and there's no frame of reference. We're forced to learn a lot in a short amount of time, and under duress; and it can be a lonely and confusing experience.

So,  as I mentioned in episode 1, my sister and I are currently taking care of my father who has dementia. His specific diagnosis is Lewy Body Dementia with Parkinsonism. I'll go more into the details about that diagnosis in another episode because I want to devote an entire episode to that - but just to let you know - we're currently providing care for someone who is suffering from dementia.

Prior to that, my mother was in in-home hospice, where we took care of her ourselves, and she had breast cancer. We lost her in May of 2017. So I've been through it with my mom and we are currently in the thick of it with my dad, and both of these experiences are my reference points for the discussion surrounding caregiving. I also wanted to point out that my sister is single and lives with our father full-time, whereas I am married and live with my husband. I just wanted to share that because it informs some of the discussions we will have going forward when we discuss family dynamics.

Another reason I decided to start this podcast is I realized that sometimes I was dumping on people who couldn't really understand because they haven't been through it themselves - not that they weren't supportive. People can only be there for you the best they can; but I think there is something about the shared experience that is cathartic. So this is also an outlet for me. It's freeing to discuss these things, and share with people who have, or are experiencing the same thing.

So that is why this is topic is something very close to my heart and why I wanted to do a podcast for other caregivers out there, just so that we all know we are not alone.

I also wanted to add that this may be the only thing I can do pretty soon because I am still trying to hold down a full-time job while we're taking care of my father, and that isn't sustainable for many reasons. Even though we have FMLA - or the Family Medical Leave Act - here in the US, in my opinion it really isn't as helpful as you would think. The only thing FMLA does is protect your job. It doesn't protect your income. And I have still heard of people who were fired while they were on FMLA. So it's debatable as to the extent of those protections. I'm currently on intermittent FMLA, which we will discuss further in a separate episode as well, but - the bottom line is, my employer isn't really working with me.

We worked from home, obviously, for the duration of 2020 into the first half of 2021 like the rest of the world, because of the pandemic. But as soon as we were directed to return to the office, my employer began to behave as though a work from home policy never existed. For someone like me, who is a caregiver, working remotely is ideal because it would give me the opportunity to provide care for my father without my work suffering because I could just work from home while taking care of him - which is exactly what I was doing during the pandemic. My employer had no idea. They didn't notice. It didn't disrupt my work at all. What is disruptive to both my work and taking care of my father is having to physically go into the office. That is the major obstacle in my life right now. I have used up all of my sick leave. I'm dipping into my annual leave. And at this point, I'm honestly ready to quit my job because this is not sustainable for many reasons. So I may be joining The Great Resignation very soon, and this is another reason I decided to start this podcast.

I hope that gives you some insight into who I am and what this podcast is all about. I also want to share who I am not.  I am not a medical professional, nor am a legal expert. So please understand that everything I share on this podcast is my personal experience. I can't speak for others or tell you what to do as far as the law is concerned in your state - because laws do vary depending on where you live. But I am going to share my own experiences and bring experts onto the show, and hope that will help you as well.

So, moving on, let's talk about the holidays. Even though they are behind us now, I just wanted to do a little holiday check-in. Are you okay? How is everyone doing out there in the world of caregiving? I'm sure I know the answer to that. We are not okay. Which is why this podcast was necessary.

The holidays can be such a difficult time for caregivers, because many of us are dealing with what is called anticipatory grief, also known as preparatory grief.

What was a festive time at one point in life, is forever changed by a loved one's illness. When we were taking care of my mother, December 2016 was her last Christmas with us and, while no one can ever say that it's someone's last day for sure, it was pretty painfully obvious. There's a pamphlet that one of the palliative nurses gave us before my mom was sent to hospice, that outlines all of the signs that portend the end. I think most people are too grief-stricken to even look at something like that, and I didn't initially. I actually thought it was in poor taste to hand that to someone as they wheel their dying mother out to hospice - but maybe that's just me. On the other hand, I also like to be informed so eventually, I read it over and knew by that Christmas that all the signs were there.

So that made our Christmas complicated. Whatever holiday you celebrate, it changes things. Enter anticipatory grief. For those who don't know, anticipatory grief is a grieving process that many people, not all, experience, prior to the impending loss of a loved one. So your loved one who was diagnosed with a terminal illness may still be with you, but you may have already began grieving their loss - or in cases like my father with dementia - you are already grieving who they once were. You go through the same emotions that you would with depression. When you throw anticipatory grief into the mix that complicates the holiday spirit.

We dealt with that this holiday season with my dad. Because he does have dementia and he's not himself, he barely recognized that it was Christmas. So, besides that, along with the anticipatory grief comes depression, anxiety, guilt, and resentment. I know that one is a difficult pill to swallow (resentment), but it's a fact that many caregivers are also grieving the loss of freedom. You can't come and go as you please anymore. You can't live life the way you once did. My sister and I can't take vacation, because we don't have in-home care right now. We can barely go anywhere for that matter, because my father is at the point where he's experiencing what is called dementia-related psychosis. I don't know if what he's experiencing is actually sundowning - if you all are familiar with that -  but he has these episodes where it takes more than one person to restrain him from hurting us or himself, or damaging property. So unless we have a family member or friend to come over and relieve one or both of us, we can't travel. So there are no breaks. And when you toss the whole pandemic situation into the mix, there's a lot of bitterness and negative feelings.

But what also happens when someone has dementia is they are slowly, gradually becoming someone else. So even though he's physically still here and there are still some days, or mere hours, when we catch glimpses of his old self - his real self - a lot of that is slipping away.

There's a podcast that I listen to called The Death Diaries. And there was an episode - the guest's name was Rebecca Gunter - and she discussed her father, who had either Alzheimer's or dementia. And she said something that was very profound about accepting that your loved one with dementia or Alzheimer's is no longer who they were. This is what she said:

"Just meet your parent or loved one where they are every day with no expectations. And for the love of God stop correcting them. They don't know, let them have their stories. You don't have to correct them. You don't have to make it right. You don't have to fix it like it was before. It's not like it was before. That person is dead. This is a new shell. Make peace with it."

I know that may be difficult for some of us to hear, but in the context of the conversation, what she was saying was that you have to accept the change for your own sanity. She had to accept that her father is no longer the person that he was. Of course arriving at that realization also contributes to the anticipatory grief that we experience around the holidays that, especially for those of us who are still working, our colleagues can't understand when they're talking about holiday parties - or the holiday potluck, ugly sweater contest - whatever they’re doing - that you have zero interest in it at all. It's difficult to be in the holiday spirit when you're dealing with chaos on the home front; but you also don't want to be perceived as a wet blanket because you don't want to participate in holiday parties - or share what your holiday plans are - because no one wants to hear that you will be holding your sick loved one's hand, or wiping their behind and Christmas (or whatever holiday you observe) is the furthest thing from your mind.

Though I have noticed that it seems like the pandemic has given everyone more of an idea of what that it feels like. Because so many have unfortunately experienced loss or have been sick themselves, I think the world now has a better understanding of this type of grief that caregivers experience around the holidays. I noticed this year that everyone was more subdued. We didn't put up any decorations at work like we normally do. We didn't do any holiday parties or celebrations of any sort like we normally would, because I think everyone is kind of feeling what we as caregivers have been feeling. They have that unfortunate perspective now.

On that note, I wanted to share a little bit more about anticipatory grief from one of my favorite websites, which I will link in the show notes.

And as you can guess from the title, What's Your Grief is an entire website devoted to discussing the many facets of grief that we go through. There was an article they posted called "Grieving Before a Death: Understanding Anticipatory Grief." So I just want to read an excerpt from that now to give you all a better idea of what I mean by anticipatory grief; and I'm sure a lot of you will be able to relate to this. This is just an excerpt, so if you want to read the full article, I will link that in the show notes as well.

So anyway, here's a passage from "Grieving Before a Death."

"Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of a person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting. The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us."

So it's a pretty lengthy article that goes on to expand on things to remember when dealing with anticipatory grief. I highly suggest this read for all caregivers out there, whether you're dealing with someone who has a long-term illness or a terminal illness. I think this article gives a lot of insight into what you may be feeling around the holidays - or every day, for that matter.

I just wanted to share that to let you know that you are not alone, and what you are feeling isn't abnormal. It's natural. And we are all just trying to get through this with our sanity intact as much as possible. So I do highly recommend that read and the What's Your Grief website for all of the caregivers out there listening right now. It has been really helpful for me, and I hope it's also helpful for you.

On that note, let's move on to the small victories portion of the program. Now that we touched on a difficult side of caregiving, I wanted to look on the bright side for a minute - the highlight of this week for me. So, the small victory this week is [drumroll] my father is clean! He finally got a full shower this week, after months of fighting him to take a shower. Those of you who are caring for someone with dementia or Alzheimer's - or who have - you know that this is a big deal. My father had not fully bathed or been bathed in months. The most I could ever get him to do was a quick sponge bath with disposable washcloths - and I literally had to chase him a few times to get him to cooperate with that. But the last time I was able to give him a full shower was months ago, because when he's cognizant, he doesn't want us to see him naked. And, quite frankly, I don't want to see my father naked either.

I'm sure you all can identify with this. Part of taking on the caregiving role, is having to bathe another adult who isn't your child or spouse - and that can be an extremely uncomfortable reality. I think, especially when it's an opposite gender situation, if that makes sense. Was it weird having to clean my mom? Yes. But, to me, it's even more awkward bathing my dad. That's a struggle that a lot of people also don't discuss or acknowledge. But I'm here to tell you, I am not prepared to see my father's twig and berries - much less touching them. I would rather go the rest of my life without that experience. And I'm sure he feels the same way. Nobody prepares you for these things psychologically or emotionally.

The one time that I helped him take a shower, I tried to preserve his privacy as much as possible. So I had him undress while I waited on the other side of the door, and sit on a shower while I handed him a towel to put over his lap. He could do that because he still has some pretty good mobility, but I understand that this may not be the case for everyone. We also invested in a handheld shower attachment. So, I cleaned off everything that I could without exposing him, then asked him if he thought he could handle the rest himself. He said that he could, so I handed him a soapy washcloth and let him manage that himself. But that was on a good day. On a bad day, he's so confused, he doesn't know how to change into his pajamas. So there 's that. Also, the type of dementia he has results in a decline in motor skills, so some days he can manage simple things like using a washcloth - and others, he can't.

So his HMO works with another healthcare provider that does home visits. And we were finally able to get a health aide to come in. Now, mind you, his doctor gave us a referral for this in November. It is now January, and we were just able to get that coordinated. So a health aide came out to bathe him a couple of days ago, and I was really nervous about how he would behave or whether he would cooperate because...hashtag dementia. Those of you who are taking care of a loved one with dementia or Alzheimer's know the unpredictable nature of it all. Everyone is different, everyone doesn't become combative or violent, or agitated necessarily. My father didn't for a long time. However, it has come to the point when he does get agitated and  becomes combative from time-to-time.

The type of dementia that he has causes hallucinations. He has tried to bite and scratch us when he's hallucinating that we, or someone else, are trying to rob or kill him. He's punched my sister, damaged my hand, torn down curtains - you name it. And that is par for the course with lewy body dementia. So I was quite nervous to have not only a stranger come into the house, but someone who would see him at his most vulnerable.

The other issue we face with my dad is I've realized that we can't tell him things ahead of time. If we tell him that someone's coming, like the physical or occupational therapist, or a nurse - I try not to tell him too far in advance because it sends him into a tizzy of anxiety for days leading up to the appointment. So I have taken to only informing him of these things at the last minute, because that's just what works with him. I'm not suggesting that you do this because maybe you don't have the same issue, but for him, it seems to be a trigger that sends him spiraling, and that's what we don't want.

My father has always been a very anxious, paranoid person in general - to the point where I think he maybe should have been in treatment for it - but he was never formally diagnosed as far as I know. So I do think he always had some level of clinical anxiety. And I think that anxiety coupled with the dementia exacerbates things. I would much rather tell him ahead of time to give him an opportunity to mentally prepare, but I've realized that we can't. So I actually waited until the day of, and didn't tell him until the health aide was on her way. When she called, she said, you didn't tell him I was coming?! Listen, if I told him that you were coming, you would not be. But he needs a bath. So just come on and we're going to play this by ear.

That's what I told her. Just come on and we'll see how it goes. So I hung up with her and I asked him how he would feel about someone coming to help him bathe. And, of course, he wasn't interested.

I didn't argue with him, but I didn't call the health aide and cancel either. Needless to say, I was very pleasantly surprised that she was able to bathe him without incident. He was very cooperative. When she first arrived, it definitely took some convincing, but she was able to get him in the shower and cleaned up.

He smells amazing now, and I definitely think he feels better. You know, I do think that there's some awareness there, even if it's fleeting that you're not clean, or you don't feel clean, or that you smell bad. And I'm sure that's distressing for someone like my dad, who was always fastidious. So I do think that he felt much better afterwards and, if nothing else, he smells better. Also, I was worried about infections or sores setting in. So this is a big win for us. Right now we're just going to try to do that on a weekly basis.

I'm sure there are times when an aide is going to come and he's not going to cooperate, but even if he goes two weeks, it's better than going a month or months even, without getting clean. So I am so relieved we were able to get that done, and that is the small victory this week.

I just wanted to share that and celebrate the moment because basic hygiene seems like something so small for those of us who are able-bodied, but it is a major undertaking for someone battling dementia or an illness that affects their mobility. So I'm very thankful this week for that.

Now we are just about out of time, but I wanted to close with one quick thing. Each week, I want to share something that we as caregivers can squeeze into our otherwise unpredictable days that will give us a moment of peace and center us - if only for a moment.

Caregiving puts us in a very extreme place, where either you don't have a lot of time for yourself - or you find yourself waiting for long periods of time. Or we just find ourselves often in panic mode because we never know when we have to spring into action. So I just wanted to share things that are accessible and may be beneficial to you emotionally or mentally - or at least things that have worked for me in this caregiving journey. 

One of those things that has worked for me is something called Slow TV. Slow TV is basically a video of some scenery. It's usually someone taking a stroll through a garden, or riding a boat down a river with a go pro strapped to them, so that you see everything from their perspective. Then they upload it to YouTube. It sounds weird, but it has a meditative effect for me. Some of my favorites are people walking through the woods, or a city I haven't visited. The historic sites and shrines or temples in Kyoto, Japan are some of my favorites. Supposedly, SlowTV is soothing because there's no plot or dialogue to focus on, so you can just zone out. I guess it's similar to white noise, but visual.

Another benefit of SlowTV for me has been that it gives me the opportunity to feel like, albeit temporarily, I'm somewhere else - like I'm at the beach or on Lake Como. It's like, I'm traveling without traveling. It's definitely no replacement, but it's a start, sort of.

Whatever the case, it has been helpful for me. It may not work for everyone - like ASMR doesn't work for me, but there are others who swear by it - I guess you just don't know until you try.

So, to find some of these videos, just pull up YouTube and search on SlowTV. Another way would be to search on 4K Walk. Either one of these search terms should bring up plenty of options. The videos can range anywhere from 30 minutes to 3 hours. There are a lot of options, so check it out. That's my little self-care tip for this week. Hopefully it will calm your nerves as it has mine. Try it out and let me know what you think.

And that about covers it for this episode of This is Chaotic. If there is anything you would like to share with other caregivers and listeners - maybe this episode sparked something you would like to share - you can leave a recorded voice message to be played on the show at [301-541-7062] or reach me via email at thisischaotic1 - that's numeral 1, not spelled out - at gmail.com. Please only share your first name and where you are calling from - or any other relevant details you want to share - like maybe your loved one's diagnosis. This podcast is about the shared experience and shedding light on anything that can help us all through the chaotic experience of caregiving.

And that's it for this episode of This is Chaotic. Please tune in next Monday and subscribe for future episodes wherever you listen to podcasts. Also, please share. Spread the word to other caregivers, and join me every week. Until next time, remember, we are all doing our best. Take care and thank you for listening.