when you have to accept a non-preferred caregiver

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
661
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
I'm sure I'm not alone in this. My husband, children (the older two are 10 and 9 yr olds but they do plenty of caregiving!), and my PCA Erica, are the primary CALS in my life and Im comfortable with them. But sometimes if I travel to visit family, or if my husband has to be away for work, I'm left with what I privately think of as a babysitter, but basically a caregiver who is filling in. It's usually a family relation but even so I often feel uncomfortable being cared for by them. This week my grandmother was here and she spoon fed me a little lunch and I felt embarrassed and uncomfortable. When I visited my brothers out of state a few months ago they had to dress me and feed me and they had a female friend come over to shower me. I know beggars cant be choosers but how do others handle discomfort with non-preferred caregivers?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,942
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Is the issue competency, or they do ok but different ways, or that you don’t trust them/ feel safe they can handle the unexpected or is it people taking on the caregiving role when you want to keep them as your grandmother, brothers only? Or something else?

if it has to do wirh process that is easier to address but if it is the person’s role that is a lot harder because it is another loss. I am sorry it is all so unfair
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,520
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Kristina,

First, consider yourself blessed that you have people who care enough about you to want to do this. Next, remember all the times you changed your children, fed them, cared for them, and just stayed with them when they could not do for themselves. If I were your mom I would consider it a honor to help you with your basic necessities and, I'm sure, your grandmother feels the same way. She probably changed you more than once so think of it that way.

You are a wonderful, patient mother. Let your family and friends do things for you and have no guilt or bad feelings about it. They love you.

If someone makes you feel uncomfortable for another reason, make your feelings known.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
661
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
yes it has to do with their role in my life and with a sense of loss of boundaries and dignity. Being fed seems like a small thing compared to more intimate acts like toileting help, but even so I hate being fed by anyone besides my husband and kids. I can't explain it. I guess it's a pride thing. I feel embarrassed and awkward.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
661
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
you're right Kim, and I understand it rationally, but my feelings aren't always rational! But I know you're right and I recognize that we are truly blessed to have the support that we have from loving family and friends
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Kristina, while I totally agree with Kim and need to hear these words to keep me in touch with reality, I hate having to move my friendships into intimate caregiving roles. Who gets to be put into the role of toilet, dressing, or transfer assistance? Some will never do any of these and now a few have had to help with all of it. But I am reluctant to ask for this new role my dear friends need to find themselves in with my disease.
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
45
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
It is at times like this you find out who the real families and friends are. I hate to have help, but the reality is, I have to. The 3 weeks in the hospital and rehabilitation center cured me of modesty with strangers, but people I know I have a hard time dealing with it as well. In the end, they're doing it because they love us, we just have to find a way to accept it...
 
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