Episode Transcript
[00:00:09] Welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Jokowski and thank you for joining me today. Today is a really good topic and I, I, I'm adapting it from a conversation that I saw about people talking about what they wish they had known before or sooner or on their experience what they wish they had done. And I want to just go over some of those highlights because I found it very interesting and I want to share it with you. In the meantime, what's self care? What did I do for self care? I finally decorated for Christmas and there's just this thing about it that just makes me feel so happy and cozy. I love winter and I love the big sweaters and I love just the introspection and the hibernation and the yumminess of it. It just makes me so happy. And then the joy of other people bringing people. Jo so I decorated for Christmas and my house is just all cozy with all of that happiness and joy. So that is what I did for self care. It's a big undertaking, but it's so much joy. And so now onto our topic. This was a beautiful conversation that I was able to stumble upon in one of the caregiving self care groups that I'm on. And I love how those of us just starting on the journey can learn from those of us that are further along in the journey. I love the opportunity to look back and see, like, what would I do different? How would I improve that? How can I be better? Do I have regrets or am I proud of where I'm at? I am very much somebody who reanalyzes my life and I want to live with no regrets. And yet we all have regrets at some point in time. So in this experience with my mom, I look back and I say, you know, what do I feel like I've done well? What do I feel like I could do a little bit better? Where do I need to adjust and how do I need to navigate this new situation? And so to come across other people talking about this was absolutely beautiful. And I just want to share. So one of them, literally one that was repeated over and over again, was getting help sooner. Finding people and programs that could support either the caregiver in giving the care or the loved one in what they needed, learning what the diagnosis was or asking questions sooner.
[00:02:46] Someone else sadly said, building steel around your heart because it's going to be broken thousand times a thousand.
[00:02:54] We love our loved ones and this is a nasty disease. And as time goes on and their personalities change and they start Forgetting us or they're not able to do this, or a new decline or symptom arises. It's heartbreaking, and it is a long, long grieving experience.
[00:03:19] And on the one hand, you want to feel everything and you want to be so present. And on the other hand, you really want to protect you and yourself. So how do you navigate holding your heart in love and still being strong enough to walk through all of the emotions that you are going to experience in this, in this journey? And being aware of that might be the biggest blessing of it all. Being aware that you will have these feelings and these emotions, and it's okay. Every single one of those emotions is valid and real that you're having that. So don't discount it, don't minimalize it, feel it, let it move through you, and then you'll be better. On the other side, if you bottle it up and stomp it down, it's going to bust out like a pop bottle that's been shaken up. Give yourself some love.
[00:04:16] Someone else said doing the POA, the power of attorneys and the DNRs early on, and a lot of people echoed this one, that at the very end, some people would say, you know, keep them alive at all costs. And loved ones would come in and argue about who needs to be in charge and whether or not their loved one actually wants to stay on this earth. And going over that information early on instead of waiting until it's too late would have been a huge boon for them. And I can speak from experience. I already have both of those on my mom. And it makes everything so much easier because I know I can make those decisions and there is less fear and uncertainty simply because I know what she wants and what I'll do as things progress. So all of the paperwork, the wills, the trusts, everything.
[00:05:10] And speaking of the trusts, somebody talked about putting assets into a trust early on for Medicare, because Medicare goes back several years to see where that person's finances were. And you have to pay down those finances kind of so that you can then qualify for Medicare and they pay for more stuff. So doing the paperwork early was something a lot of people talked about. Downsizing.
[00:05:42] This one's a hard one.
[00:05:45] We get attached to a lot of our stuff. And I wonder how much of this generation was a saving generation. And they had, you know, they liked to keep a lot of things and mementos. And on the one hand, it's beautiful to have all of their stuff and their knickknacks around them. And on the other hand, down the road you're going to have to figure out what to do with all of that stuff. So. And if they go into a memory care facility or assisted living facility, then that leaves you to go through everything. So is it easier to downsize with your loved one early on? Are they in a space to be able to do that or not?
[00:06:25] Learning to forgive yourself, and that can be a hard one. When you are tired and you are stressed and you are frustrated and your loved one is yelling at you, calling you names, accusing you of things, and maybe you say something and you feel horrible, maybe your loved one falls in the middle of the night and they live with you and you don't get there until hours later and you just feel horrible. There are so many things that can happen.
[00:06:55] Looking back on it and thinking, gosh, I should have done this or I should have done that. Learning to forgive yourself and acknowledge that there is no book, there is no lesson manual for this disease and for being a caregiver for someone, because the disease is so different from for every single human being that goes through it. There's no way to tell us how to do this step and this step and this step. There's just no way. That is simply the way that it goes. So forgiving yourself, acknowledging that it was new to you and it was a challenge and you absolutely did the best that you could, giving yourself a little more compassion and love is huge.
[00:07:35] Someone said, try to find. Create fun, enjoyable moments with your loved one.
[00:07:43] Finding ways to laugh together or simply be at peace together. Not expecting anything else of each other, just knowing that you're in each other's presence and that's good enough so that they could cling to those and remind themselves of those good times.
[00:08:01] Family conferences. Now, this is something I already do with my siblings. In the very beginning, we did them every quarter.
[00:08:09] Right now we do them probably every six to eight months.
[00:08:12] And it's actually getting more frequently again because of where my mom's at. But those family conferences have been huge and unbelievably good for me because I'm able to tell them where she's at and what's going on. And I'm also able to let them know where I'm at and what's going on. Because where she's at is one thing in her disease and her decline and her reality that she's living with where I'm at is quite another as her caregiver. And at times I need someone to step in and I need additional support, and they are my, you know, they need to be my first line of defense on that. So having those family conferences and keeping them up to date on her and her needs and where things are at is has been huge.
[00:09:00] And that way, nothing's a surprise later down the road. It's like, well, we've already talked about this and I've let you know.
[00:09:07] A talk doc for yourself or a support group, multiple support groups, multiple talk docs. Counseling for yourself, counseling for your loved one. Any kind of support that you can get. People who know and have been through this, Hugely, hugely beneficial and important for any caregiver, and it can be very beneficial for the person going through it as well. Our local senior center has a support group for the person going through it and people further on in the disease. They want the caregiver to sit with them, but it's an opportunity for them to talk about the difficulty and the challenges that they're having accepting what is for them.
[00:09:54] This next one is a bit of a controversial one, because the answer was letting them go sooner.
[00:10:02] A lot of people commented on this one and agreed about the fact that they did sustain the person's life a lot longer. And they felt like their loved ones suffered more and longer than they needed to, because as the caregiver, they weren't ready to let their loved one go. And that they wish that they had allowed the body to take its natural course and decline and pass on sooner instead of holding them here for the loved one or for the caregiver instead of for the loved one's best interests.
[00:10:40] Education.
[00:10:42] Education about the disease that you are dealing with, whichever form of dementia that is. Education about being a caregiver in general. Huge education about the different stages of the particular dementia that you're dealing with.
[00:10:58] Stages are not hard and fast. They're a generalization of, hey, if your loved one is doing these things, they're probably in this stage, but your loved one is often doing things from like stage six and stage five. So, you know, which stage do you say that they're really in?
[00:11:17] And there are so many different people who have stages and what their definition of them. So it's really hard to say what stage your loved one is in, but to be able to say, I understand, we're kind of in the very early stages, or we're in the middle stages, or we're in the late stages.
[00:11:37] And what is the available support in your area for those different stages?
[00:11:43] How can you support yourself and how can you support your loved one in those different stages? And where does hospice come in? Where does palliative of care come in. How do you bring things that will be beneficial to all those involved in the issue?
[00:12:03] Another thing with education is like possible actions and reactions to how people are coping. So if your loved one is having hallucinations, what are possible actions and reactions that you could have to help them navigate through those hallucinations? Or if they're angry and yelling or violent, what are actions and reactions that you can do or take for that? When they're confused or when they're so, so very forgetful and they're like, well, where is, when is Johnny coming home? And you know, you know that Johnny died about 10 years ago, but your loved one doesn't remember that anymore. So instead of saying, well, they're gone. And then your poor loved one grieves, it's, oh, well, they went out to get their hair cut, they'll be back in a little while.
[00:12:50] Soothes your loved one. Like, what reactions can you have to several different things that might come up. And how can you help your loved one and help yourself?
[00:13:02] Somebody said, self care, self care, self care. I needed to know that it was okay for me to have self care and then I needed to understand myself enough to know what self care was. And I think that's something that we all struggle with and yet I'm here to push it. Saying you've got to do self care to is the most important thing as a caregiver. You are giving care to somebody else and caring for them and you're not going to be any good if you don't take care of you and put yourself up higher on that list.
[00:13:33] Somebody said, getting a good medical team that is responsive and caring. And I cannot echo this sentiment any more loudly.
[00:13:43] Any more loudly. My mom and I, like, in the early stages, we had a medical team that like her regular doctor, primary care physician. It would take five and six days to get a response from her.
[00:14:00] It would take four and five days to get into the doctor's office. If my mom had a suspected UTI and she was super confused and not doing well and seemed to be declining and I thought she had a uti and I'm trying to get into the doctor and I can't get into the doctor. I have to take my mom to urgent care. An urgent care here doesn't want to deal with people over the age of 65. They would rather you go directly to the hospital, so to the ER and, and now I have a doctor that responds within 24 hours and I can text her and say, I think my mom has a uti. Okay, let's get her in right now. Let's take care of that. So I agree wholeheartedly with a good medical doctor or a team, because we have. My mom's the doctor that's a psychiatrist and is very familiar with dement dementia and old age people. She has her primary care physician and then she also has a palliative care doctor. And all three of those are much more responsive than any of the other ones we had in the past. And I'm so grateful for that because it reduces my stress, knowing that I'll have answers much quicker and I have to soothe mom for a shorter amount of time.
[00:15:09] Someone said it's okay to cry and grieve.
[00:15:13] I agree. I agree. I agree. It is okay to have every single emotion you have, whether it's regret and remorse, or if you're angry and frustrated, if you're resentful, happy, scared. Every single emotion. They are all okay. It is okay for you to cry yourself to sleep at night. It is okay for you to tribal yell.
[00:15:42] It's all fine.
[00:15:45] None of it is wrong, and none of it makes you a bad person. It's okay. We all do. We all feel that way. Your loved one feels that way, too. They want to cry, they want to scream. They're angry. They're resentful of everything they've lost, the abilities that they've lost. They can't go to the store by themselves. Just go get a hamburger if they want to. The fact that they have to rely on somebody else, it's really angering and upsetting for them, too. It's okay for both of you to be upset.
[00:16:13] Someone said they wish they'd been a better advocate, that they felt like they defaulted to the doctors a lot and that they didn't think that they had enough education or knowledge to be able to be a good advocate for their loved one. And if they had been a better advocate, maybe they would have had their loved one on better meds for a better quality of life. Or maybe they would have allowed their loved one to pass sooner instead of having her intubated or, you know, keeping her heart going for a longer period of time, that kind of thing.
[00:16:54] One person said this, and I thought it was beautiful. She said, I wanted to always take care of and protect my loved one. What happens is you lose the magic and you lose you.
[00:17:08] And you also lose your loved one's relationship.
[00:17:13] They were advocating for allowing yourself to find a facility or a place to take care of her loved ones so that she could maintain the relationship that she had with her loved one and not lose the magic of hey, I'm here to visit you. Hey I'm here to have some laughter and joy. Hey let's play this or that or the other that that. Over time you get more tired and more struggles and more frustration and so you lose the ability to connect in the fun relationship way that you used to have and that having a facility that takes care of them lifts the burden enough that you can go and do that. So advocating for allowing yourself instead of feeling guilty, acknowledging that a facility with somebody that can watch over her more easily than you, it might actually lift your burden enough that you can go back to a parent, child or spousal relationship friendship with joy and ease compared to the weighted struggle of a caregiver role that is there.
[00:18:33] These are just some of them I'm sure you guys can add to it.
[00:18:38] I love the conversation. I love the thought that it provokes that it makes me look back and say what do I wish that I had known and how can I do better moving forward?
[00:18:50] I ask myself this a lot and I adjust course as much as I can moving forward. I do feel like I'm losing myself a little bit in this. Okay, not a little bit a lot in this experience with my mom that I'm just not as joyful, light hearted, easy and free as I was before this long goodbye and responsibility of being her caretaker. And I also recognize that I've chosen into this and I keep that in mind a lot. I've chosen into this and up till now I don't have regrets up till now I feel like I've done a pretty damn good job and I'm proud of myself for that and I need to look at how can I course correct so that I don't lose myself more and so that I can maintain a piece of me while nurturing all of her. So thank you for listening and sharing. I hope that you have gotten some tidbits of knowledge and gems of wisdom that you can take action on and move forward with.
[00:19:59] I hope you do some serious self care this week and come back next week. Take care.
