Photo: Rachel wearing Molly's Movement T-shirt that says, "Not Today Anxiety, I'm CAPTAIN COURAGEOUS"

Raw Life Update from Rachel

I know after a month of radio silence here at TakingCareofGrandma.com, you’ve probably been wondering what we’ve been up to lately.

Don’t get me wrong, I think about my blog every single day. And I’ve been feeling guilty (see, there we go with the guilt) for neglecting it. Truly by neglecting it, it means I have been neglecting myself. There is nothing more therapeutic than unpacking your thoughts and experiences and making some sense out of them.

I thought I’d spend a few moments typing up what’s been going on in case you’re curious.

Over the past few months, Grandma’s memory has been declining pretty steadily. It started when she went to the hospital right before Calvin passed away. It requires more of my attention to provide her oversight, and that’s a reason (not an excuse) for why I have not been blogging lately. I have been spending more time with her.

Besides the instrumental activities of providing care, the emotions and stresses are a lot higher than before. I feel like I’m transitioning to a new stage in my journey. For a while, I’ve been coasting on the super organized and consistent system I’ve created for Grandma. But things are changing, and a force that is out of our control is pushing back against that system.

Her body is slowing down and we can normally only do ‘one big thing’ a day. She is eating less. She has a lot of pain due to arthritis in her knees and neuropathy in her feet, so getting her to move around is a big deal. She has been complaining more frequently about her vision, which she thinks is getting worse, but the eye doctor says hasn’t changed (from what they can see). If you know anything about Alzheimer’s, you know that it often affects people visual fields.

Grandma has started to confuse the things she has been doing with people. While Karen has taken her to bingo for almost a year, recently Karlin started taking her. When Karen filled in a couple weeks ago, she explained everything to her like Karen had never been to bingo before.

Some of the things we’ve always done, she will tell you she has never done before. She doesn’t remember things we did even a couple days ago. She really struggles remembering names of people. She has a hard time following along in conversations. She is having a lot of trouble remembering what things are called. She circles back and asks the same question within 30 minutes.

Sometimes, when I talk to her on the phone, and even when I’m with her, I am not sure she knows who I am.

It’s not an easy thing.

 

 

Since our established systems and routines aren’t working as they once were, we’ve been adapting strategies. I’ve amped up her level of 1:1 support so she is spending less time alone at home by having her helpers stay a little longer than before. I’m thinking through using her LTC insurance policy to help her at home and what that will look like. I’m learning how to cope with and respond to my grandma’s decline by applying what I read in The Dawn Method and soaking up other resources on caring for people with Dementia.

One of the ideas I’ve had to be able to support Grandma without ‘putting her in a home is to find a house that meets both of our needs so that we can live together. I have been looking for and at houses. If you have ever bought a house or moved before, you know that it can be hard to find a place that meets both your needs and wants without rehabbing the whole place. I’d like to find a place that’s away from town, with lots of space for us to roam and spread out and plant stuff and maybe even get some animals. So that has been a little distracting.

I know that I have to be realistic. There may come a time where I just can’t do it anymore. Everyone has their limits. Everyone has their right to a life. Right now, I am willing to make large sacrifices to make sure my grandma has a good life in a home of her choice or with family for as long as possible. But due to complexity, I might not always be the one who decides what that looks like and how it happens.

Something might happen to me. If something happens to me, as her sole living family and primary caregiver (and DPOA), there is no other option for her than a residential living situation. Something might happen to her. She IS old. One false move and it’s a hospitalization or worse. So we are going to be touring some memory care and skilled nursing facilities in the coming months while Grandma’s faculties are still somewhat with her, so that we have an agreement if that time ever comes. (This is partly to pacify professionals who still see the need to tell us skilled nursing is imminent.)

 

 

You might know that earlier this year, I became self-employed. I started my own graphic, web and media design company so that I could be more flexible to my family.

That has also been keeping me really busy. I’m glad that I chose the self-employment path, because to be honest, caregiving has kicked my ass. After eight years of going into an office everyday, then compounding that with the my responsibilities to love and watch out for Calvin, and the time I’ve been with Grandma, let’s just say the past few years have really taken a toll.

I needed some time to just decompress and reset, especially after losing Calvin. It couldn’t have been better timing. There is no way I could have taken the time that I ultimately needed to move on after such a tremendous loss as a full time employee. Somehow, I feel like God created an avenue for me to do this, because he knew that time was critical for me. I have a really important duty ahead of me. I need to prepare.

This has meant working on taking time for myself. Since I don’t have to report to a workplace and commit to a set schedule, I can relax and just be if I need to. I have been working on letting a natural rhythm take its course in our lives. Overall, I say it is going well. I have enough work to keep me busy through at least October, and I am even booking projects into spring of next year! I’m glad I decided to become my own boss.

 

 

Which, leads me to November! The National Caregiving Conference will be hosted in Chicago November 8-11 and I’m freakin stoked! That’s one of the reasons I wanted to come back on here and share the latest news! I’m headed back to #NCC18 for the second time to share my experiences as a small biz owner and family caregiver. I’ll also talk about raising awareness of #millennials who care. I’m so excited! If you are a family caregiver, past or present, I hope you’ll join me and attend this conference. It was truly life-changing for me last year. You can come to Chi-Town and be there in person, or you can attend virtually. Learn more at caregiving.com/ncc18/

 

Trust and believe, my nose is back to the grindstone and I plan to pick things up again. Stay with me and we can share our helps and stumbles across our caregiving journeys with each other. I plan to finish out my latest series, take you along on our senior living tour, and share all the caregiving game I’ve picked up with you.

 

xo

Graphic: rachel's first name in cursive handwriting

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