We live in a time where only our best days are put out there for all to see, only our best selfies are tagged and published. Have you ever been out with friends and having an okay time, or even a not so okay time, but still had to take that group selfie to publish just how much fun you are having? Think about it. If the entire time all you’re doing is taking pictures and retaking pictures to make sure you got your good side, how are you even enjoying the time out with each other? And now everyone is believing that your life is all rainbows and cotton candy when really it’s not. And if even one post comes up in your feed where someone is not having a good day, we skim right by, we possibly “like” the comment instead of read the comment which in itself is bizarre – to “like” that someone is having a bad day- or we add a superficial comment like “hang in there”, or “whatever doesn’t kill you makes you stronger”, or “God never gives you more than you can handle”. Blah…blah….blah.. And then I realized, I too post and publish pictures about the good days with my grandma. I never post about the bad days. I have one uber caring friend at work who can read me and my facial expressions beyond the smiles and asks how I’m doing because he instinctively knows my grandma and I just went through a bad night. But most people don’t ask. They don’t want to engage. So the “Facebook friends” may believe that caring for someone with dementia is not so bad. But that’s definitely not the case. What does a bad day caring for my grandmother look like? It probably looks exactly the same as caring for anyone having a bad day I guess. I’m not a parent. I’m not a teacher. I’m not a nurse or a doctor. I’m just a grandchild caring for her grandmother. But the bad days are bad and often enough.
With almost everything else in life, “bad” days have differing degrees of bad and can consist of all or a combination of the following:
- A failing mind –
- have you ever tried explaining to someone how to go to the bathroom? Not how to walk in and undress and sit. I’m not even talking about how to explain the hygiene aspect of wiping and washing. Not those actions. I’m asking, have you ever had to explain the actions necessary to relieve oneself? I don’t even remember being taught. It’s one of those things we all eventually know, like how our bodies know to take a breath or blink, or how we know to feed ourselves when we’re hungry. But someone with a failing mind, who’s incontinent, does not have that basic knowledge any longer and cannot feel or decipher those feelings.
- There are days when my grandmother cannot even put her arm through a coat sleeve. Or, when we put lotion in her hand, she goes to eat the lotion rather than spreading lotion on her hands and across her arms.
- Irritability/Stubborness –
- Oh those days when my grandmother just wakes up on the wrong side of the bed and fights everything. What fun. All of sudden she hates her food, she hates the clothes she’s wearing, argues about wearing a hat due to the cold but then hates that she’s cold and that we didn’t give her a hat (even though we did but she tore it off). Those stubborn moments when she refuses to nap, refuses to do exercises, refuses to watch T.V., refuses to sit with us but then is angry that she’s all by herself in her bedroom (even though she’s the one who chose to go there).
- Insomnia –
- The days she doesn’t sleep are the worst and I’m sure contributes to those irritable days. Sometimes, no matter how hard we try, she just doesn’t want to sleep. She forces to keep herself awake. But sometimes I’m sure her incontinence keeps her up as well. I can only imagine so. Those are the longest nights. When she refuses to sleep and I’m up with her to make sure she doesn’t fall and hurt herself.
- Upset stomach/Illness –
- Have you ever eaten something that turned your stomach upside down and then you’re sick for an entire day? Can you remember how horrible it felt where you most likely thought that your body was trying to kill you? Now imagine that but with dementia, a failing mind that cannot make sense of what is going on. Oh man! Thank goodness that doesn’t happen often as we try to keep my grandmother on a clean diet, but we can’t always control what she eats at the center. So when a day comes where she’s vomiting or worse, those days are the days she actually thinks she’s dying. And those are the hardest and the longest because we’re dealing with everything on this list and more.
- Multiple accidents occur when my grandmother’s sick. This isn’t just multiple trips to the bathroom type of accidents and therefore multiple cleanups but this is even multiple times of cleaning the bed linens and the floor and anything else.
There are definite long and bad days in caregiving. I just have to remember not to take it personal. I have to remember that even my grandmother is confused by what she wants, says and/or feels. So I have to remember to stay patient, stay loving and stay calm. I also have to remember to put myself first by giving myself time to de-stress and rejuvenate throughout the week or possibly throughout the day.
Wow! An amazing, illuminating and beautifully written post. Thank you so much for this. You love and devotion to your grandmother shines through very clearly.
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Thank you so much for your kind words.
Each post of yours either inspires or reminds me of something every time. This one brought back memories of my grandfather who had Alzheimer’s disease. It was heart-wrenching to see him not able to recognize himself, let alone me. Everything must be so alien, confusing and frustrating… He used to be fed slurry food through syringes because he forgot how to chew. He forgot how to go to the bathroom, sometimes he even forgot that he could sit down. That he can sleep… it’s very painful. I wish I could have spent more time with him – he lived in a different country with my uncle and aunt. I cannot imagine how it must be like to watch your grandma everyday and even more, take care of her on a daily basis. It must be so emotionally draining some days and tiring… I’m sure you wouldn’t have it any other way… but it’s really tough what you’re doing and I want to thank you for it. Love matters so much, especially when one doesn’t know what it means.
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Thank you so much. It is really tough and draining but it’s worth it when I make her laugh before she gets to sleep or when I come home from work. But especially because I know she’s happier here. I’m sorry to hear about your grandfather. To forget so much but to still have the willingness to live. Their strength amazes me.
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You are so right. We have become so obsessed with portraying perfect lives to each other that our connections become superficial. Yet many of us would prefer to have a real conversation with someone who says how things really are. Thank for sharing this side of your story.
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Thank you for reading and commenting. The only thing we can do is realize that we’ve made life so one-sided and unattainable sometimes. We need to accept that life is not picture perfect. And it shouldn’t be.
Hi there – do you have anyone helping you? it seems so much to be taking on just by yourself!
Hi! I work full time so I definitely can’t do it on my own. My mom comes one day every weekend for a few hours and she helps get her ready in the morning for the center and is there to pick her up when she’s dropped off until I get home from work. And even on the weekends, I have my husband watch her for the hour I work out. It definitely takes a village.