Episode Transcript
[00:00:10] Hello and welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Jowski, your host and today I want to talk about asking for help because I had to ask for help. And before that I want to talk about self care. And if you listened to my last episode, you'll know I, I went to my talk doc. I went to my talk doc and asked help and advice and support and she was absolutely wonderful and beautiful and she's the one who encouraged me to ask for help. So let me tell you about that journey and we'll start now. So I have been caring for my mom since 2018 in August.
[00:00:51] And she moved to Colorado because she was very much depressed, struggling and she was falling a lot. And that made me worry. And I had told her when I moved back to Colorado that we would help find a way that she could come be, be here as well. And when she was falling a lot, I decided that it was better to do that sooner than later because I was worried about her falling and hitting her head and not being with us anymore.
[00:01:19] So I brought her here. And at the time I thought, I've got this. I'm strong and capable. I am self introspective and willing to look at issues and navigate through them and I can deal with my past relationship with my mom and just all the things. And I thought, I can do this. At the time, there was not a terminal diagnosis. It was just me being a presence, support from my mom. However, it continued declining and she would fall at night and she would walk. She would get up in the middle of the the night and she would walk into a door jam and knock herself out and she broke her tailbone. And so I noticed then that she was really unstable and that she was struggling in many ways in that arena. And then I discovered like through some sleuthing, I learned that one of her medications that she took at night was causing some problems. And so we weaned her off of that one and learning about that and going down that pathway, that meant that then I started going to her doctor's appointments and I started watching her medications. And so I have been doing that ever since then, keeping an eye on where she's at and how she's doing and what's going on. So, so here I am and I, I thought, I can handle this, but I didn't. It's one of those things where you say I can handle this and I can do this. I can take care of this person. You agree to it before you actually know everything that you are going to go through and you do not know. There is no way for you to know the depth of need and support that your loved one is going to have. There is no way for you to fully know what will need to be done until you are in it and dealing with it. So we agree to it before we know the depth of it. And once we know the depth of it and that, it just keeps getting deeper, that gets really, really difficult and it starts to wear on you. During the first year, I was kind of floundering and really trying. Like, on the one hand I was confident. On the other hand I was struggling. And then I finally got a talk doc six months in and about a year I looked at her and I said, you know, I think I've got this and I feel like I'm on my stride and everything just seems normal and I am capable and I've, you know, she said, it's exactly what I see with a lot of people at one year. They, they're, it's. It's like they've been in it so long that now it seems like smooth waters because they just keep going and working through it, but it just seems easier because they've been doing it for so long that it's like muscle memory.
[00:04:10] Well, lately I had a conversation with her and it's been two years and in this conversation I am sobbing and I am struggling.
[00:04:22] And it was to the point where I.
[00:04:28] In 2001, I had a nervous breakdown.
[00:04:34] I could not control my emotions. When somebody offered to help me, I would just cry because the idea that somebody would be so kind to me would cause me to crumble.
[00:04:45] And I really was struggling and I was in that same place and I was feeling very fractured and very broken. I was very much struggling with life.
[00:04:56] I could go and I could be in my mom's presence and I could work with her and deal with her.
[00:05:01] But then I would go home and I would feel so exhausted and so emotional and so bitter and angry.
[00:05:11] And if people were kind to me or checked in with me, I would just cry.
[00:05:15] I would wake up in the morning and I would cry until 9 or 10. And then. And then I would function throughout my day and then come six o'clock at night. At the end of the day, when I was just exhausted from dealing with other people and continuing to help my mom with whatever she needed, I would just start to cry and be angry and frustrated and really struggled again at the end of the day. And so my emotions were so close to the top and I was really struggling. And I looked at my husband and I said, if something doesn't change, I might need to look for a home. And I think I'll make sure that by this time of next year she is elsewhere. Because I can't continue putting myself through this. I feel like I'm losing myself. I feel like I'm losing who I am and I don't know if I'm going to be able to put myself back together.
[00:06:11] So I realized I needed to talk to my siblings. I needed to talk to them and say, hey, this is where I'm at. And I put together a zoom call so that we could all chat. And on the zoom call, my expectation was that I would tell them what was going on for me, where I was at, how I was feeling. And then I would tell them that I would like them to think about how their family could support me and mom so that I could try to get some breaks and relief and that we would come back in September, in December and get together again and have another conversation.
[00:06:52] It took a lot for me to choose to ask for help because I thought I had it and I thought that I was doing this, I was saving my siblings from having to deal with it and that I had taken it on. So since I had taken it on, I needed to be the one that saw it all the way through. And if I didn't see it through, then I was a failure that I did not succeed at sparing them.
[00:07:25] I had a lot of emotions around not being good enough.
[00:07:41] Frustration at myself for letting the emotion and the stress get to me to the point where I had to ask for help. My pride was hurt. I was embarrassed and angry and scared because my mom doesn't need to be in a home.
[00:08:07] We don't need to spend that money on a home. Right now she's, I don't know, 70%, 80% self sufficient.
[00:08:17] She can still cook food for herself simply like in the microwave or boiling noodles on the stove.
[00:08:25] She can do her own laundry, she showers, and her own hygiene is taken care of. She's really pretty good on many different levels but.
[00:08:34] But there are definitely several other levels. Like I make sure she gets to her doctor's appointment and I make sure she has a social like people coming in so that she's not lonely and isolated. And I do all of her meds and make that she's taken care of and covered in, in lots of different ways.
[00:08:57] So I had this conversation with my siblings and I let them know I'm struggling. I'm Falling, I'm feeling very shattered is the word that came to mind.
[00:09:09] And I asked them to think about how their family could help and fully expecting that we would have to come back to it and talk about it in a month.
[00:09:22] But that's not what happened. You see, my siblings were like, okay, well, we'll take her for a week at Thanksgiving, someone else will take her for a week at Christmas, somebody else will take her for a week or two in February.
[00:09:39] And that way I can have a break and I can be here at my house without her so that I can enjoy my space without her and I can have a break from being watched like a hawk. And it who.
[00:10:00] I cried.
[00:10:03] My husband joined in on this phone call and he.
[00:10:07] He usually doesn't. He normally just lets me deal with the phone call, but he jumped in on this one and he was like, very supportive. And when I couldn't speak, he did.
[00:10:18] It was hard to swallow my pride and it was hard to deal with how I felt.
[00:10:25] And yet I am so unbelievably grateful that I asked for help that I reached out. And I know that I am blessed to have so many siblings that can and are willing to help.
[00:10:47] I know another gal who has been dealing with her mom for 15 years.
[00:10:54] She just got married to her boyfriend of 10 years and her boyfriend, after a month together in the same house with her mom, told her siblings, this isn't fair. She's. She's done a lot. You guys need to figure out how to step up now.
[00:11:14] Again, the sister didn't think that she could do that. And the other siblings were like, oh, now what do we do?
[00:11:26] I don't know why we choose to take it all on ourselves. I don't know if it's a requirement because it's our parent and so we feel guilty or this additional pressure. I don't know what that is. But I do know that even though I've been doing self care, even though I've been constantly fueling into my cup as much as I could, that I was still falling and I was still struggling, that the stress of caregiving was draining me to a point where I just couldn't.
[00:12:04] And even though I was so tired and exhausted and emotional, I would still go out to my mom's house and I would laugh with her and I would play a game with her and I would help her out and I would go back to my house and I would just be drained.
[00:12:20] I was giving every little bit of energy that I had to her.
[00:12:27] And yes, I would do Self care. Yes. I would take a break. I would go play pickleball and use my body for energy and get some of those endorphins. That would help me be a little more positive.
[00:12:40] I would spend time with close friends and have coffee and tea. I was. I was doing what I could to take care of myself. And yet that wasn't quite an enough because I needed to ask for more help.
[00:12:52] And now that I have asked for help, I feel hope.
[00:12:56] Hope was gone.
[00:12:59] It just felt like this is the way it is and I'm just going to have to keep going. And I didn't realize that that's how I felt. I didn't realize that I had fallen so far until that first day that I just crumbled in tears and I couldn't get on top.
[00:13:20] I didn't realize, I wonder how many of you guys feel the same way.
[00:13:29] I didn't realize how drained I was until this moment happened or this thing happened. And at that point, who do you turn to and how do you find help and support?
[00:13:45] My prayer is that you can find that help and support, whether you have siblings or family or loved ones that you can let in for that break, that moment.
[00:13:59] Perhaps it's through your senior center and they have adult programs during the day where they can go and play cards or sit with other people and they give you a little bit of a break.
[00:14:14] What programs are around you and in your town or city that can help give you more of a break?
[00:14:26] How can you support yourself?
[00:14:28] How can you pull in that extra lift that you need?
[00:14:37] I thought I had it. I thought I was good to go. I thought I could deal with all of the little jibes and the microaggressions and the frustration that she sends my way, the disappointment, the hurtful funnies where she just kind of digs. I thought I had it. I thought I could do it. I thought it wasn't a big deal. But let me tell you, they wore me down.
[00:15:03] They wore me down. And they do wear you down too. No matter how thick your skin is. I'm sure that there's just this little part of you that just struggles.
[00:15:14] I swallowed my pride.
[00:15:17] I asked for help. I sent it out in the universe. I need more support.
[00:15:23] And gratefully, because I took that step and asked for help, I was answered very loudly.
[00:15:32] I do want to say to you, asking for help is the strongest thing, the most powerful thing you can ever do.
[00:15:41] Yes, you have to humble yourself, which feels weak, but in the same aspect, it is strong and powerful for you. To ask, and when you ask, you will be answered.
[00:15:54] Thank you for listening. Thank you for your love and support. Thank you for supporting each other and knowing that this is a challenging journey to walk and we can all be support for each other knowing that we're not alone, knowing that there are other people out there. Find a support group. Find a counselor, a therapist, talk doc. Do whatever you need to do to give yourself the support and the help that you need to be able to continue doing the amazing things that you are doing for your loved one and for yourself.
[00:16:26] I'm sending you love and until next time, take care.
