Memoryz is built for caregivers by caregivers. We are constantly adapting our app to fit caregiver needs by listening and learning from their experiences.
“At the beginning it was just me and my family in this little bubble; then I discovered organizations such as yourself who have reached out to me and supported me in my journey and I never knew there was such a community out there.”
“Caregiving has definitely made me appreciate things a lot more and try to make richer experiences. It's nice to talk to somebody who shares the caregiving experience that you have, even if it's a little different.”
“I love what you’re doing and I wish there was something like this [Memoryz] available when I was going through my caregiving journey, which provides support other than medical and just for your emotional day-to-day stuff.”
“One of my favorite things is just being out with her, like at a cafe or somewhere, and the way she connects with strangers is a really interesting thing to witness because she'll smile at them or wave at them. I think that really changes people when they're like, oh, someone just smiled and waved at me.”
“It's about being organized and having lists and calendars. That's not easy for everyone, but I think writing things down and setting reminders is really important. I can't tell you the number of times when my sisters and I have come home and said, ‘We’ll look after dad, don't worry,’ and then it gets to lunch time and we realize no one's given dad his morning medication.”
“[Regarding misconceptions] The assumption that you shouldn't feel any sort of grief because someone's alive... you are allowed to feel grief and and you're allowed to grieve the changes because they are painful so I think that's something that I wish I heard earlier on”
- Diana & Sandra
"There's this myth that self-care is this thing that people don't have time to do, but you have to make the time even on a busy day to say, ‘I'm committing 30-60 minutes to me-time.’ Self-care can be as simple as, ‘I'm committing to call a friend that I haven't talked to because I've been so overwhelmed.’"
"In the first couple of years I actually did suffer from caregiver burnout and I was off work for two and a half months. That's when my therapist taught me that I can't take care of somebody if I'm not taking care of myself. I wish that I had known that it was okay to take time for myself and it wasn't selfish."
"In our Polynesian community, a lot of families don't talk about dementia and our movement is about changing that. We want our people to know that it's okay to talk about it and that we're all in this together. A lot of people have come forward with their stories and our platform is about sharing these stories and being a voice for other caregivers. We just want to support each other."
- Jess & Ange
“It's an emotional roller coaster; don't feel guilty when you take time off to take care of yourself. You need to take care of yourself before you can give the best version of yourself to your loved one. Don’t ignore your emotions or feel bad for feeling things because they’re not socially acceptable. It’s your journey, stay true to yourself and keep going.”
“I had to be able to drop everything at a moment's notice and go tend to her to either calm her or make her feel better, and stuff like that kind of put my needs on the back burner for a while but with the help of my family and with the encouragement of those around me, I realized I can ask for help. For self-care try journaling, a glass of wine or binging on some Netflix”
“During the pandemic, social media is the first thing that you go to because we can't physically see each other, but also just as a caregiver it's not very easy to just leave the house and go physically to a support group. Social media is great, get on your platform to find your village...that's what I did and that's what saved me, that's what helped me get my voice.”
“Sometimes things are out of your control and sometimes you just have to accept that, just be easy on yourself and gradually you will get better at it."
“Educating myself is what gets me through it; knowing what’s coming in the future, what the next stages are and the decisions we can make to help prepare for that ... You are not alone in this journey there are many of us all over the world that are going through this”
“Being in that place of uncertainty and just looking at it and recognizing it and not judging myself for those emotions; you’re going to have messy emotions fighting each other and we use humour a lot to get through this journey.”
"For me it was very isolating getting a diagnosis [FTD], especially with my mom being so young. I just felt like i couldn't relate to anyone and so i knew there had to be people out there who might be going through the same thing."
"This is family and that's the most important thing. It was kind of two-fold; I want to raise awareness, but I also want to focus on me, the caregiver, and how I am managing this.”
“Remember that there's a bigger purpose and that you are literally becoming a better person every single day that you are caring for your loved one and that's the best gift you can give to somebody; this level of unconditional love. That would be my advice to other caregivers out there.”
“Apps were one of the first things I started to look for because everybody has smartphones. I didn't find a ton so then when I saw your app, I was like oh my gosh okay, here's one here's one.”
"I found music was very helpful in the beginning, if ever my dad was not having a good day I could put music on and he was transported to another world it was magical.”
“I would say that caregivers need to understand that you have to take your shoes off, put theirs on and then understand that they have a disease that they do not want to have. And then have patience.”
“I had to make a choice between my career and also spending time with mum as much as I can before her disease fully takes over, but i was also trying to figure out my schedule and trying not to burn me out which is why i emphasize that self-care is so important."
“If you do not take care of yourself first you will not be any good to the person that you are caring for. My sister and I learned that the hard way because we were so vested in taking care of my mother that we would fail to take care of ourselves and so now my sister and I remind each other to self-care because if not, you will hit a wall.”
“The biggest thing I've learned is that you get strength from anywhere from out of nowhere, you think that you have no more to give, you still continue to go the extra mile and sometimes you don't know how it's going to pan out, but somehow it always works out.”
“I would say for anybody that has a loved one with dementia is have some really good quality time with them and try to treasure memories in those moments as you go along.”
“Just knowing that there's others out there, getting their ideas on things, how they do their daily routines, there's just been so much I've learned through connecting with people... I love everything you guys are doing"
The biggest 'aha' moment that I had, was that I cannot do this alone even though I have my husband and my children, I really had to build a huge network and community for myself in order for this to work."
“Looking back now, I would have told myself to be a lot more patient with myself and to be a lot more patient with my mom. I had no idea how hard this was going to be... but I wouldn't change the fact that I brought her here with me, I'm most definitely glad because I do want her in a safe and loving home.”
"The advice that I would give is make sure that you have a system and that you have help in order to avoid burn-out ... Task-management and tracking tools are also extremely important for things like pill tracking ... You really need to establish a routine and try to remain patient, even if that can be difficult."
"I'm just trying to embrace the new him and treating him with as much sympathy and respect as I can ... It's just a matter of understanding it's not their fault, it's not coming from any malicious place. My biggest piece of advice is just complete self-care, self-love and forgiveness."
“It's been a privilege to look after my mom. She has always done it for me. She's cared for me my whole childhood and half of my adulthood as well. I like to know that I have given her the best possible support that I could have with my circumstances and to make it the least distressing as possible for her.”
"It’s definitely become easier because I feel like educating myself and learning from more experienced caregivers, I have a better sense of the road ahead and better management of self-care. I think that's one of the most bewildering things: how to maintain self-care while also figuring out how to navigate those boundaries of caring for another person who's an adult."
“It’s just really taught me that as long as you can adapt to a situation you can still get what you want, it just may not be exactly how you saw it. Since I’m home taking care of my mom, writing was something I now have the time to do. So lately I’ve been getting a lot more recognition for it and it’s partly because of the amount of time I have now to dedicate to that craft.”
“It took me a while to accept it and acceptance is very important… She said to me, “It’s not going to go away. You’re not going to change it. So you can either carry on fighting it, which is causing you to stress, and it’s causing mommy to stress, or you could just go with it. And y’know what? Something really hit home with that.”
“It can become incredibly isolating and a lonely place to be. Any kind of online support that can connect people that are going through the same thing is really helpful. Even now it can be done through zoom or remotely, which is really helpful.”
“One of the things that my sister suggested was to make jewelry. We took these jewelry classes and my mom loved it. She turned back into her old self and she was happy again. I have to say, as humans, we have to have a purpose. We have to have something that fulfills that deep inside calling, whatever it is."