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As a caregiver, what helps you the most?

Caregivers | Last Active: 18 hours ago | Replies (40)

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Profile picture for richardfrancine @richardfrancine

I sympathise with all of you as we are all in the same boat on choppy waters. My husband also has end stage renal disease through no fault of his own ;auto immune disease)

It is very hard to take when your partner has increasing brain fog. You feel like saying: “What IS it that you don’t understand?” But you don’t because you know it’s the toxins accumulating in his/her brain and not their fault. Sometimes I see the wonderful man I married. At other times I am tearing my hair out. I feel like all I’m doing is walking behind him to pick up and clean up. I am practically happy when I drive him to dialysis three times a week (used to be peritoneal at home -more work - but the time comes when this is not sufficient anymore- ) I call this my time off. I find that he gets upset over trivialities. It doesn’t take much to set him off. Sometimes he will tell me what to do and it doesn’t always make sense. He is slower than molasses going uphill in winter - again, not his fault, and I get it. But you feel ALONE. And at times you feel discouraged and depressed. You see to everything and you get physically and emotionally exhausted. I try to find solace in reminding myself why I married him and remembering all the good times we had together. It makes my day when he says thank you for all you do. Please try to find comfort in knowing that you are not alone and in remembering how wonderful your partner used to be - and that he/she would be there for you if the roles were reversed. Take care and God bless

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Replies to "I sympathise with all of you as we are all in the same boat on choppy..."

@richardfrancine
Thank you for sharing your situation. I can relate for sure. When my husband was admitted into the hospital about a month ago just for two nights, I was almost happy to have a night alone. This is a hard life, no doubt. I have a cat and a dog-my only solace right now. I don't know what i would do without them. I wonder if they have any idea how precious they are.
But, I feel the same as what you feel-the constant cleaning up, it's endless. The depression is sometimes like one of those weighted blankets, just crippling. I have days that I feel like I haven't done enough, and when I do something for myself, albeit it minimal, I feel guilty. Its tough, but I feel like it is very skill building.
Stay strong!

@richardfrancine I am in almost the exact situation. My husband angers easily these days. He has to be in control. He tells me I am stupid and don’t know what I am talking about. He is hard to communicate with because he can’t keep straight what he said and when I answer he says that isn’t what I said. I can’t win for trying. what do I do. He is now becoming confused with how the thermostat works. Our house was at 57 degrees last night. It woke me it was so cold. He keeps switching from heat to ac. Help