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Caregiving: When reality smacks you

Posted by marley411 @marley411, Aug 3, 2023

I’ve been my mom’s caregiver for five years. Her decline has been steady—not slow, not fast. With periodic bit changes. So I go for long stretches of time thinking “I got this!”

My current stretch ended today. She started repeating “I love you.” As in all day long, unless asleep or eating. Part of my brain says, “This is precious! She truly is a loving person, and this is just an extension of that.” Another part says, “One day you’ll wish you could hear her say ‘I love you’ all day.” And then there’s the part of me that just tired and annoyed and frustrated and scared and guilty.

How sadly, terribly ironic that it is this sweet trio of words that complete defeated me today. Before today, I worried about being able to meet her needs, but always felt like I’d be able to learn and adjust. I’m strong! Today made me realize the truly insidious nature of dementia and its impact on my life. That sounds so selfish. I guess what I’m saying is that I have always worried about my mom, but today I started to worry about myself. Today made me feel powerless, incapable, and in-over-my-head.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

marley411 | @marley411 | Aug 6, 2023
In reply to @ranch "Very interesting how different people are affected by this disease. Also how care takers react. I..." + (show)
@ranch

Very interesting how different people are affected by this disease. Also how care takers react. I guess I am fortunate that at this point only my memory is shot. Sometimes answer same question 15 an hour. It not the physical strain that bothers me. But every now and then the mental strain is overwhelming. I went to a therapist to learn how to cope better but it was a disaster. Obese women just sat there and yawned after three sessions I said the heck with this. So far my load is a lot less than most I read about for which I am thankful. I yea a 350 mile trip to therapist. Thanks

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I get it. I live in a small, rural town. So finding a therapist that 1) I haven’t known since childhood and 2) is not a former student is impossible. And finding an online therapist who specializes in caregiver support has been challenging. I found one, but her advice was to find respite care or an adult day care. (My small town might technically have such programs—but the quality is poor.). I’ve realized (like you) that the mental strain is the worst. So I’m going to start the search for an online therapist again.

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marley411 | @marley411 | Aug 6, 2023
In reply to @maryvc "I’m listening to Travelers to Unimaginable Lands - stories of dementia and caregivers. This was a..." + (show)
@maryvc

I’m listening to Travelers to Unimaginable Lands - stories of dementia and caregivers. This was a book recommended somewhere on this site.
I think it is very helpful for understanding both the caregiver and the one receiving the care.

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Definitely adding that to my TBR list. Thanks!

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ranch | @ranch | Aug 6, 2023

Funny isn’t it if you haven’t been there you don’t realize where you are. Just have to go with the flow. The only thing that really bugs me is getting pharmaceuticals taken each day and on time.Have not solved that problem

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anotherday | @anotherday | Aug 14, 2023

marley411 - I'm so with you on this. DH repeats, repeats and then just for fun repeats again and again. Sound about right?! Take a deep breath, h-o-l-d it, then release it slowly through pursed lips. I'm working solo, no back up. Those who know won't lift a finger because of DH's bizarre behaviors. He has said and done some really strange things. I envy that you can leave even once in awhile. I haven't left him for any longer than a 40 minute run to the PO and the dumpsters, twice, since last Winter. Both times I staged a way for him to be otherwise occupied and hurried as fast as was possible. Your mother is repeating I love you. DH gets stuck on saying anything and everything to do with (drum roll please) condom dispensing machines. I just go upstairs or downstairs until it passes and then return to the main level with him.

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