Apply Now
RSS Feed Print
Posted: Monday, November 22, 2021 10:54 AM
Joined: 3/14/2018
Posts: 393

I’m so tired and worn out that respite by family doesn’t feel like respite. Hired people do what I ask...when they stinking show up. Family do what they think is best. It’s all done in goodness and kindness and caring but it’s too much in too short of a timespan...packing in activities, meaningful moments, projects to help us... I just want to be left alone to deal. Let us continue our slow march. Let things not be perfectly clean and beautiful and smelling nice as we deal with a mag citrate dose and an enema. If I get respite I have to go and somehow fix my brain and stress level, do all the things I need to do at my house and come back ready to go again 4 hours later. Having an ungrateful, confused and combative LO (new behaviors that are the result of her being irritated when I keep her safe from herself) is giving me a bad attitude. Thanks for listening.
Iris L.
Posted: Monday, November 22, 2021 1:30 PM
Joined: 12/15/2011
Posts: 17565

After a certain point, PWDs need to live in a bubble.  They (and me) cannot tolerate much change in their daily routine.  


We live in a different world and outsiders just don't understand.  I have stopped explaining, I just do what I want.


Just a suggestion: perhaps in the future you can get your respite folks to do outside chores and errands while you keep the home fires burning so to speak.


live in daughter
Posted: Monday, November 22, 2021 1:59 PM
Joined: 10/25/2021
Posts: 21

Hi RanchersWife, my brother used to come from out of state maybe twice a year to visit with our Mom. By this time my two sisters and I were live in full time caregivers for our Mom. Our brother would come in for a week visit and begin to give views on how to care for our Mom. We knew he meant well but the tension he caused did not help to give us respite in caring for Mom. 

We endured his suggestions, his attempts to change some of the day to day routines we had established. While he did this in love of my Mom, I don't think it occurred to him that maybe this was to much of a disruption for all of us.

My Mom's circle of who she felt safe with was shrinking and some family members who visited rarely could not always understand this. It was as if the time for them to be involved in our Mom's life had passed and we were now living in a new normal which might not include some family members.

Hope this helps- 

× Close Menu