College Kid to Caregiver (and back again?)

Have you ever watched a Rom-Com or “chick flick” in which some actress who you’ve seen play the same role 100 times goes through some comedic lows and just past the three quarter mark, she gets the chance to grab life by the bal-excuse me-hand, and run with it? After watching it, did you make fun of the bad jokes and familiar plot line, but secretly wish you could do the same thing? Yeah, me too.

IMG00233Five years ago, I moved in with my strong and loveable great-grandfather. For his age, which at the time was eighty-nine, he was rather healthy and getting around the house pretty well, but he was also stubborn and needed someone around to keep him from pushing himself too far. His daily routine included working on his truck and tinkering with various appliances so imagine my suprise when three years later, he was diagnosed with Alzheimer’s type dementia. It progressed rapidly and within a month, it became apparent that he would need 24 hour assistance.

Five years before his diagnosis, when he was making his living will, we made a promise to him that we would never place him in a nursing home so after his diagnosis, the family got together to work out a plan. The plan called for me to quit my job since my grandfather agreed to pay for the necessities I would need, so I did. The plan also involved having regularly scheduled assistance from three other relatives, but that part didn’t work out. Within three months, I was mostly on my own with him. I have one relative who isn’t mentally capable of helping, one who isn’t physically capable, and another who, like the rest of the family, just can’t be bothered.

(You know how people tell you that college will be the best years of your life? I sincerely hope they are wrong.)

I did not know it at the time, but moving into my grandfather’s was first of many choices that essentially equaled me giving up my early twenties. Quitting my job was was the so-called final nail in the coffin. For the majority of the last two years, I have not been able to leave the house with the exception of going to class and in order to do that, other things need to be

done. Meals need to be made, medications need set out, etc. I have friends who try to equate the situation with that of a working mom, but they are not the same. Being a caregiver for a dementia/Alzheimer’s patient means having to take care of someone who is convinced they are your boss. I used to think the kids I babysat for didn’t listen, but I did not have a clue, and let’s face it, there is a difference between changing a baby’s diaper and changing an adult diaper. Instead of going out with my friends, having lunch and dinner dates, going to the movies, shopping, taking a drive or even just going for a walk down the street, all of which mothers can usually do, I’m at home watching the man I grew up calling a my hero forget who I am.

What does this have to do with predictable chick-flicks? Not much on the surface. I am usually trying to squeeze in a few minutes of homework time in between calming down my grandfather so I don’t have much time for movies, but when he’s finally asleep and the house is still, all I can think about his how I wish my life was a rom-com. I could leave this place in the dust, jump in the car and start my adventure, make my own choices. That’s really what I want, to make choices solely for myself. I forget what that’s like. In fact, I can’t remember the last time someone asked me to do something that didn’t require a grandpa-related response, that is, until recently. Last week, I discovered that a band I like added a new stop on their tour. It was only three hours away and tickets were only $20.00. When a friend suggested we actually go, I just said yes. I didn’t think about it at all, but after the conversation, reality set in. Who would watch grandpa? How would we get there? How would I make it to class on time? Where would I get the money? Fortunately, it was too late. The tickets were purchased. The concert was three weeks away so I had time to try and figure it all out, but it was still the most spontaneous I’d been in years and it felt incredible.

It has been a week since I planned this mini trip, but I can’t stop thinking about it. I can’t stop thinking about not coming home, about driving even farther away in search of my true story because this can’t be all it is. I’ve always been desperate for the day I could have my own place, but it’s no longer the innocent thought that it was when I was a kid and thought being an adult would be the greatest thing in the world, the way we all felt. Instead, it’s now a feeling riddled with guilt. I wish everyday that I didn’t have to take care of him, but he never complained about taking care of four generations of children, some who weren’t even related. How do I reconcile the desire to be young and free from such responsibilities with the desire to be the devoted granddaughter? How do I deal with the fact that I want nothing more than a little help, but don’t want to leave him with anyone else? How do I deal with the possibility of him waking up five minutes from now and not knowing who I am? Most importantly, how do I know when enough is enough?

5 thoughts on “College Kid to Caregiver (and back again?)”

  1. My Grandpa Riley had dementia, and my Grandma Jo is suffering from Alzheimer’s, so I know exactly how you feel. The only difference is my family placed these relatives into nursing homes. It was the best for everyone: we were still able to maintain our sanity, and they were in a facility that knew all about their medications and how to take care of them. Sure, I would have rather seen my grandpa die at home than in a nursing home, but I know that he got much better care than anyone in my family could’ve given him, especially when we had no idea what was going to happen. Putting relatives in nursing homes is SUPER difficult, but it’s best not only for their safety and health but for ours.

    Your timing for this post is kind of funny. My Grandpa Riley, the one with dementia, died on Valentine’s Day, and I was recently thinking about what life would’ve been like if we left him out of the nursing home. Honestly, I think being around people his age and being so close to doctors and all is what kept him alive longer.

    1. 😦 I’m sorry to hear about your Grandpa, but I’m glad you were able to find a place with good help.

      Honestly, I think if we were to put my grandpa in a home, it would end up killing him. I’ve had other relatives in homes, but he’s always been adamant about staying home. My Grandma passed away in 2004 and we all expected him to follow soon after, but he’s healthy as an ox. I just took him to the doc & hospital recently and they were all stunned by his health, with the exception of his brain. He’s diabetic and has high blood pressure and cholesterol, but I know how to manage them so his levels were all good. I do a lot of research and I talk to nurses from time to time so I know what to do, but it’s a weight that’s for sure. Watching him fade away is harder than actually taking care of him 90% of the time and knowing that I have an enormous family, but am the only one caring enough is just as depressing. It’s not fair to him, which is why I feel guilty for complaining. Rock & a hard place…

      1. You shouldn’t feel guilty for complaining…You need to have a chance to vent, and this is your way of doing so. This is something you honestly do not have to do, but you do it out of love. And you continue to do it for the same reason. Your relatives will be the ones who feel guilty later in life when they have to live with the fact that they didn’t all they could for your grandfather.

  2. Nothing wrong with wanting a little free time to unwind/dance the night away. You’ve earned the Karma many, many times over. My Grandma’s Altzheimer’s is getting worse, but Mom and I tend to let my Uncle handle it because he lives much closer than we do. I can’t imagine giving up that much of my life to care for someone, especially not now. It shows a great depth of character. You are a far better woman than I.

    …that’s not quite what I meant. Erm.

    And I get what you mean about not putting your Grandpa in a home. It’s a bit like someone bleeding out, if you move them it makes it worse. Only it’s not his blood that’s spilling, but his mind. I’m sure you’ll find a solution that will let you go to the concert, somehow. Good luck.

  3. Hi I just happened to stumble across your blog from twitter and couldn’t help but to reply. I lost my mom 10 months ago from early onset Alzheimer’s she was only 63. I too had to make some sacrifices to help care for her until we (my step dad and I) had no other choice but to put her into facility for own safety. I know it feels like your missing out on a lot right now and it’s hard to see the future but when the day comes that he passes the time you spent, the things you had to give up will be worth it. I wanted to offer a couple suggestions a lot of nursing homes offer what they call respite care you can take him there during times you need to be away, anywhere from a day to a week. There is also home care they too offer respite care but they usually come into the home for a few hours allowing you time to leave the house for a break. What your going through is extremely difficult and that’s even an understatement. But again there will be a time where you’ll be thankful for what you have done. Take care!

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