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Topic Don't mess with a Caregivers Precious Time OFF!!! Go to previous topic Go to next topic Go to higher level

By LibbyBuck On 2010.05.19 13:50
Today I was promised some time to myself to go visit friends and family. The person who offered me this time is currently 1 hour and 44 minutes late!!! AAARGH!

I read a post on here that I loved because whoever wrote it was very candid about the real and frustrating reality that there is no care for the caregiver. It feels impossible to take care of yourself when you are always worried about another persons safety and well being. The only cure to relieve this stress is by taking time out, getting out of the house and doing something fun, or at least free from worry.

I've been a caregiver for my mother for 5 months now, I honor the opportunity but I had no idea of the emotions and stress that go into this. I thankfully have a very supportive family and that I am in a state of gratitude for that. Most of the family is very respectful of each others time and go to great lengths to give each other long and healthy breaks. I suppose we're very lucky in this regard, yes we defintely are.

As of right now, I have been "on" for over 2 weeks with very little support and I'm about to totally lose it. I have been looking forward to these 4 little hours of relief that I was promised over a week ago and it was supposed to happen today, right now, as a matter of fact, and it's nearly 1/2 over already!! I made plans that I have to now cancel due to this promise. At this moment, it doesn't appear that my precious break is going to happen. I want to cry from frustration!

I know my situation is better than most, I know I shouldn't complain but I'm so upset from the lack of disrespect for my time, I could SCREAM! Does anyone else have this kind of frustration or am I just a whiner?

Thank you for this forum; it is a beautiful thing,

By MJ-Camano On 2010.05.19 14:29
I know and understand your frustration, having time to ourselves is so precious!! Please try thru your state for Respite care, a local Senior Center may have some other ideas for you; but please take the time to research your options. It is important for you to take care of yourself!

By karolinakitty On 2010.05.19 15:53
NO whiners here ... we all know where you are coming from ... i'm getting my first break in over a year... my youngest just got back from Iraq and has 2 weeks leave, so i'm going to the 'Burgh for 4 days ... 2 days driving ... but don't care ..... Although my pdr says i'll be checking in regularly, and he knows i will ... i won't have to "do" anything .. that's a break in itself........never be afraid to vent here .. we all have been there or done that........ :)

By RhondaM On 2010.05.19 16:10
I have been a member of this forum since 2001 when my dad, the PD patient, was still alive and at home. He passed away in 2003, but I have kept coming back to read and sometimes post if I feel I had something relevant or helpful to say. Mostly I just read and relate.

Well, my dear sweet mom, who is 88 now and was my dad's primary caregiver for 25+ years with his PD, is now under hospice care for cancer. I am her primary caregiver. I have moved in with her and fortunately we live next door to each other (as in the country, not the city) and so I continue to run home all the time and shower and change clothes and grab a few minutes of solitude off an on throughout the day.

Hospice has been absolutely wonderful to my mom and to me, and I don't know what I'd do without them, but after 7 months of caregiving and 5 months of living with my mom, I have experienced some of the frustrations and near-burnout that others have posted about, such as this thread. I can relate. Even though I have a wonderful family that offers to help, I am the only daughter and I feel it is my responsibility to be the "one" and even when I leave her in others' capable hands, I worry and want to rush back. It's very emotionally draining.

However, I do not want the alternative, which is for her to pass away. The thought still terrifies me, even though I go through times where I think I have reached acceptance. I know from losing my dad that no matter how well prepared you think you are, or how much you want the suffering to end for your loved one, you are NEVER "ready" to say good-bye to them forever in this world. I know I have a heap of grieving to do. It's kind of like a Catch 22. I miss my old life terribly, but I can't want it back because that is like saying I want my mother to die. It's like things are bad now, but they are going to get worse, and then even worse after that.

Anyway....I just wanted to say I can relate to this thread, and I'm still here, all you old-timers and new-timers, too. Been almost 10 years, but it's a way to honor my dad's memory to continue to come here.


By Mary On 2010.05.19 17:03
I too poke my nose into the forum and read and relate to many, many posts. My caregiving days are over but I truly understand what those of you living this journey are going through. I was disappointed over and over again by family members offering me some time off. Many times I'd think this time they really mean it and nothing. My relationship with one of my sisters has permanently deteriorated due to her continued broken promises. When I did take a few hours off, thanks to my husband or kids, I'd just worry and want to get back home. Once Dad had to go to the hospital and I felt relieved to get a break and not have to worry about him, which brought on tons of guilt. I miss my Dad terribly and feel blessed to have taken care of him. Hugs and blessings to you all, Mary

By Emma On 2010.05.19 19:06
LibbyBuck, first of all, welcome to the forum. We are glad you're here. I truly understand your anger, frustration and disappointment. I had a similar experience just last week and I cried when I realized that my relief (which I had finally just managed to arrange) was not going to show up in time for me to follow through on my plans, if at all. It's so frustrating when we have so little time to ourselves. Just knowing that you are going to get out can keep you going and when it doesn't happen it's a crushing blow. You are not a whiner. You are a human being who needs time away. We can all sympathize.

By LibbyBuck On 2010.05.19 19:12
Thank you all for your kind and honest responses. I did get a bit of time off and I feel much better now, but mostly because I know I'm not the only one in the world who has felt or is currently feeling this.

Strength and Courage and Love to you all,

By lurkingforacure On 2010.05.20 08:08
Why did this happen? What can be done to prevent it from happening again? The more stress we are under, the more important that time off is-everyone has a breaking point. Perhaps you could line up your main relief, then have a substitute lined up just in case the main relief was late/did not show up, etc.

I'm sorry this happened, but glad you posted and shared with us. I hope it doesn't happen again, but if it does, we are here for you.

By parkinit On 2010.05.20 21:55
Libby -

I agree with the response to check into respite care. I have been pretty much "on call" since my husband suffered a major setback last Sept and he has rapidly declined since then.

I can relate. The immediate family first said "We'll be there; we'll help." When pressed for specific dates and times, though, the story changed to "We don't think we can handle this after all." I know; I feel your angst. I have decided to totally rely on respite care and companions or health caregivers for my husband. To he** with the rest. We'll get through this - all of us will.

God be with you...

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