The National Alzheimer’s Buddies team recently met with Instagram influencer @lifewithgrams. Kris has been taking care of her grandmother, Mary, who has had Alzheimer’s for the last five years. Kris is also very active in raising awareness and funds for Alzheimer’s disease within her community in Chicago. On her Instagram, she posts regular updates with her grandma, and is able to share a glimpse of her experience as a caregiver with her followers. Read the following interview transcript to learn more about her experiences with her grandmother and as a caregiver for someone with Alzheimer’s.
NAB: How long has Alzheimer’s Disease been at the forefront of your life?
Kris: It's been at the forefront of my life for the last four and a half years, my great-grandma had Alzheimer's. She died when I was about 16 but at that time I just assumed, it was like all older people got that and forgot. I really didn't know anything in-depth about what it entails or anything like that, so when my grandma was diagnosed at the end of 2016, we saw a lot of irrational and weird behaviors from two years before that. Once she was diagnosed, that's when I really kind of dove headfirst into learning everything I could and really being impacted by it, because I ended up taking care of her so I'm about four and a half years in and I have been fully involved.
[At the time she was diagnosed] my sister had just had a baby, and my grandma was leaving the baby unattended and doing things like that. Grandmawould never have done that before. [Once] her hair burnt off when she was using her curling iron and I guess she was leaving it on way too long, not knowing how long she was using it. And all of her hair burnt off and she blamed it on my brother-in-law. She said I know it was you, you came down here and cut all my hair off and we [said] Gram what's going on? My sister [said], “I have this brand new baby, I don't really know what to do, I don't think she can live here anymore, because I'm worried.”
My mom [said] don't worry about it, I'll come get her. So, my mom took Grandma and brought her to Vegas where my mom had lived, and then again my mom was like she’s blaming me for everything she's putting weird things in the fridge and I don't know what's going on. So then my family here in Chicago decided to bring her over to see if we could figure out what's going on.
[When she came to Chicago] it was November, and it was snowing and she got really fed up and [said] “I'm done I don't want to be here anymore”, and she walked out of the house without shoes on and would not come back in, and so me and my sister that live here called 911 because we did not know what to do.
From there, it was like a three month process of her being evaluated and put into these different memory units while figuring out exactly where this was stemming from. Eventually, she was diagnosed with Alzheimer’s.
NAB: Can you tell us more about how the diagnosis played out in your family, in terms of tension or stress?
LifeWithGrams: That was definitely a very trying three months. The doctors, after giving us the diagnosis, presented it as if it was the end, and not that she could actually thrive with this disease. There was really no positive feedback or anything. They just said our next step is a memory care unit or a nursing home. So, because of that, my grandma was placed in a nursing home. She's got Medicaid insurance, so it really wasn't our choice as to where she was going to live. Our options were limited because we did not have the funds to pay out of pocket and she's always been low income her whole life. She never owned any property or anything like that; she's always lived with family. We had a few options of where she could stay and we picked the one closest to us.
She was there for about three months and I visited her everyday. I wanted to go see her and make sure she was okay. Within those three months, she lost about 25 pounds. I saw that it was really affecting her as a person, she seemed depressed and miserable there. I know everyone's situation is different but nursing homes on a national level need to be evaluated for [standard of care].
[For us,] it was not a good environment and it was really crazy timing. I had an open room available [at my house] and I spoke to my family, and I [said] look I know I’m 29 years old, I know you all think I can't do this but I don't have any children, and I feel like this is what I am meant to be doing. I said I can't watch her in this nursing home any longer. I said she used to be full of life a few months ago, and now I feel like I've lost her completely. My family definitely said I shouldn't do this, which definitely caused some tension amongst the family, but eventually, they agreed to give it a try since it was obvious she was not doing well in the nursing home. In my mind, I felt like she wasn't going to have much time left, because of how quickly she was deteriorating.
So we took her out of the nursing home and it was a total 360 from there. Obviously, the disease was still there, and was something I had to learn to deal with but she came back a little bit when she moved in with me and my family. Although my family was very hesitant for a while, after a few months they really saw our connection and how well she was doing. We all decided this was what was best for now, and four and a half years later she is still here.
NAB: What are some of the best parts of taking care of Grams and what have been some of the more difficult aspects of it?
LifeWithGrams: For me, the best part really is getting to share that love and that joy with her. A lot of people say to me “what about your life” but what is life really if we can’t love and share our lives with people. She raised me and she took care of me so being able to share those moments still and have that laughter, and even just a hand squeeze is important to just know that the love is still there.
I would take all the hardships to still have that kind of connection. The hardest part for me really was at the beginning when it was difficult to separate the disease from my grandma. It was really hard when she would do these weird things to me; it was hard not to get frustrated.
After a few months of learning the differences and the signs of what Alzheimer’s does to you, it was a little bit easier to calm my frustrations or anger because it was the disease and not Grams. That was probably one of the most difficult things in the beginning. As of now, I feel like I'm in this really good groove and we have a nice life. The hardest part is the waiting game, I suppose. Now it's like when is the next stage gonna hit, because four years ago she knew my name, and with each stage, you have to conquer the new challenges.
We recently had a scare when she didn’t get out of bed for three days, she did not wake up. We called the doctors and everything was okay. She was just a little bit low on oxygen. Now all of a sudden she's in the end stages, you know. We ended up changing her diet and now a few weeks later she's back to walking and talking and doing everything, so it's really hard when you don’t know when the next dive is going to happen so you can’t plan for it. You just don't know from one day to the next, it could be totally different.
NAB: Do you have any advice for current or future caregivers?
LifeWithGrams: If you think you're a patient person before, your patience will grow immensely by doing this. The biggest thing I have to say is it can be a long and hard journey so find outlets that work for you. You need real support. I am lucky to have my sister live close by whom I can get support from. Take some small breaks for yourself, but if you find yourself feeling overwhelmed, this is not a job for one person, you need a community. This is not meant to fall on the hands of one person so really try to find your tribe, find the people that work for you. There are so many organizations and so many outlets with caregivers support groups, and even on Instagram and TikTok, you can find people that understand. With being a caregiver, I think an outlet like therapy is such a nice way to release any frustrations and grow as a person.
I think it's a little different for me, whereas for some people it's almost forced upon them. So I really have to say opening up your own mindset to realizing this is just another part of your life and that your life isn't over is super important.
*Some sentences have been edited for clarity. The interview was condensed for this blog post.
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