Tell Us: What Do You Need? What Does Your Caree Need?


Tell Us: What Do You Need? What Does Your Caree Need?

Last week I wrote about the misconceptions that health care professionals and researchers can have about us. (Read What They Need Isn't What I Need.) In that blog post, I wrote how my needs differ from my parents needs and how those needs need to be understood and met.

Let's help others understand the difference.

In our comments section, below, tell us: What do you need? What does your caree need? When do you both need the same support, solutions and help?

I look forward to reading your thoughts, experiences and insights.

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Sleep is a need my caree & I share. I can function with 4-5 hr of sleep, esp. if I can get an afternoon nap. . DH has Parkinson's and fights fatigue all day, which usually results in napping throughout the day. He is usually up and down most nights (which interrupts my 4-5 hrs needed sleep). \r\nGlasses is another need we share. DH can manage without his, but I don't manage as well if mine are missing in action....I have learned to check and see if he is wearing mine.\r\nSocializing is the other need we both share. socializing together AND apart from each other.

Lillie Fuller

I need sleep. My mom needs to try to stay awake during the day so she can sleep during the night.


A problem my Mom and I have been having for the past year after her long hospitalizations in 2016 with renal failure and aspiration with a Peg Tube placed, is she likes ice rubbed on her lips and tongue during the overnight hours. My Mom naps all day most likely from her Parkinson's medication. I'm up at 4am everyday preparing for the day, her bath, medication, household duties etc.... I take no naps and I go to sleep around 10/11pm. I AM BEAT TIRED after all day moving her around from chair to chair, commode to commode. (she walks a little with a rollator with me holding on to her, but basically that is the routine). I sleep on a cot on the floor of her bedroom because I have tube feeding running overnight and to hear her call me and IF I her her calling me to rub Ice on her lips and tongue I get it for her. I don't hear her all the time calling me and she gets scared and panicked. I need my 5 hours sleep. I tried everything like giving her a bell to ring etc..... It did not wake me up and she don't understand why. She expects me to stay up 24hrs a day :) She CAN NOT be left alone with ice chips in the bed with her because of the Dysphagia and Aspiration risk. She is mostly up all night because of the Parkinson's and napping all day. IT IS A TOUGH SITUATION and causes TENSION. We talked about hiring help overnight but it really does cost TOO MUCH. I get 150.00 a month on the Family Caregiver Support Program, for reimbursements for supplies & services, but that won't cut it. I CAN NOT be paid to be my Mom's caregiver because of my Moms assets, which are dwindling quickly. If we got lucky to find help for 10 bucks and hour for the 6hrs overnight, that is 420 dollars a week and we cannot afford that with the cost of living and monthly income.