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My husband and I recently moved in with my Dad, who has a glioblastoma in the left temporal and frontal lobes.

Before we moved in, I was worried sick about him every day, so I’m happy that he finally allowed us to move in and start caring for him. A daily phone call was not nearly enough anymore… I definitely feel like we’re doing the right thing and that we’re in the right place, but living here and caring for him is by far the hardest thing I’ve ever done.

My insides feel like a tornado. I constantly feel this storm of sorrow, frustration, fear, guilt, and exhaustion.

I feel the sorrow when I think about who he is now compared to who is was when he was healthy, when I think about all of the things he can’t do, and when I realize that his symptoms that will only get worse over time. Dad has always been stubborn and independent. (That stubbornness/independence is both his best and worst quality! It’s definitely torn some rifts in our family in the past..) He loves history, geology, theater, and movies. He is a self made man who has always run the show and been able to do just about anything. (Maybe I should say “was” instead of “is.”) These days, he can’t write, struggles with reading and talking, drools constantly, forgets the names of people in our family, stumbles around, chokes when he eats, has little appetite because he has mouth sores and thrush, and has scary emotional outbursts that hurt the people who are trying to help him. He’s not really the “Dad” that I admired so much. It’s devastating. I feel like I’m already grieving the loss of my Dad even though he’s just a room away. This poor “stranger” I’m caring for is miserable, and there doesn’t seem to be much I can do to relieve the suffering.

I feel inexplicably frustrated by him too. (Yes, this is a big source of my guilt…and sorrow…) I know it’s not his fault, but sometimes I just want so scream. Some days, I go downstairs in the morning and without letting me eat breakfast or even saying good morning he shoves a big list in my face of things I need to do. Most of it is completely illegible, and then he yells at me for not knowing what he wants me to do. And then he’ll want me to help him rewrite the list so that I can read it. (I can’t rewrite it because he only can read his own handwriting.) So then I have to sit there and spell out all the words on a 3 page list letter. by. letter. Ugh. I try to be patient, but that is more that I can handle. He is starting to relax a little and let me handle things, but it’s hard. He wants to micro manage every little thing, but he can’t describe what he wants or how he wants it so he mostly just yells that I’m stupid. I know he’s just frustrated, but I’m super frustrated too. I can handle paying the bills. I can handle the insurance. I can figure out where to buy pencils. I’m not an incompetent child—quite the opposite! We’ve tried finding ways to help him deal with his deficits, but there are not a lot of aids for having bad memory and not understanding words. I get super frustrated when he rejects everything that we’ve thought of to help. He’s kind of his own worst enemy right now. He wants help, but he doesn’t want what ANYONE has to offer. I get so annoyed. I have upheaved my entire life to be here, and a lot of the time, I just get blamed for not being able to fix things. I wish he was able to realize that I really do want o fix it all, but the things that are broken just can’t be fixed. The world isn’t screwed up; his brain is--and I’m every bit as frustrated by my limited ability to make the world make sense as he is by his limited ability to figure things out…

I get scared a lot too. Even though I know that he is dying and that nothing will change that, I don’t feel like that’s an excuse to stop worrying about risky/harmful things. I don’t want him him to take his pills wrong and overdose or fall down the stairs, or break his hip walking to the mail box. Now that he’s on hospice, I don’t fight with him about what to do to get better, but I still don’t want him suffering or hurting himself. I’m a nurse and I work 12 hour shifts, so he is asleep when I leave and asleep when I work. I worry all day because I don’t know how he is. I worry that he need help with writing his silly little notes, and no one is there to help him. I am afraid that I’ll find him dead…that he’ll die alone while my husband and I are at work, or sleeping, or watching a movie by ourselves. I have a lot of fear an anxiety about how dad is, and what will come.

And I feel guilty….like…all the time. I feel guilty when I work. I feel guilty when I get frustrated with him. I feel guilty when I gripe about him. I feel guilty when I don’t know what to do to make things easier. I feel guilty that my husband is stuck in this super difficult situation caring for a difficult man who isn’t even his own parent, and a wife who is an emotional wreck. I feel guilty for my own shortcomings. I feel guilty when I call in to work to care for Dad.

And all of this together makes me super exhausted, in a way that is not made better by sleeping and napping. This is a type of tired that I’ve never felt before. Even when I worked full time through nursing school and had 70 hours of scheduled time per week (not including study time), I didn’t feel like this. This exhaustion is really weird….

I’ve talked to friends/coworkers/family and read tons of articles and I’ve heard so many caregivers say similar things. For those of you who are caregivers (especially of someone with cognitive disorders), how do you deal with all of this and manage to keep your own life together, while trying to keep you loved-one’s life together at the same time? I almost feel like I’m living two lives at once..

I would love to talk, commiserate, support, and problem-solve with someone who knows what I’m going through…
Boopsey Boopsey 26-30, F 1 Response Feb 7

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You know your blessed that your husband helps you. Its hard to do it alone when no one will help. My mother in law lives with me and my wife and her 2 kids which are 22 and 17. I get up and give her medicine , fix her breakfast, lunch and dinner. Pick her up when she falls. I have no help
You should not feel guilty. You are doing the best you can do. I think you are doing great..