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If you are or were a family caregiver, what was the thing that stressed you out most?

The most stress I think was from health issues, all or most of which came out of left field, so to speak. For example, Mom contracted whooping cough. Whooping cough? She had had it as a child and told me she remembered a family member telling her to go out and sit on the porch and cough because it annoyed that person so much (it was her grandmother! Suffice it to say, she didn't have a happy childhood). I write about how I dealt with these stresses in my humorous how-to book, Why is Grandma Naked? Caring for Your Aging Parent, which just came out yesterday,

 

Periodic Contributor

Caregiving is a full-time job with no vacations, weekends, holidays, guarantee of sleep through 1 night or more and financial hardship.  I feel all 0f us caregivers experience these events.  The biggest stress for me out of the 14 years of caregiving i did in addition to working full time was the system being stupid and deaf and blind.  Society has no ideas on how to help disabled, terminally ill, and caregivers who are trying to provide a quality of life, and assurance that there loved one is well taken care of remaining at home.  All the burecratic BS is stress caregivers don't need on top of a demanding job.  The school not wanting to take care of there cost and the state just as negligent in not wanting to do their part.  So, families are the ones who are accountable all the way due to these other fools not wanting to do what they should be doing.

Honored Social Butterfly

@BrendaI912467 

What do you feel was lacking by these outside entities - what kind of help did you need that they couldn't or did not provide.

 

My overriding stresser was that yes, it was very tiring, but more than that it was that we (my husband and I) could not change the outcome - his death. 

 

 

It's Always Something . . . . Roseanna Roseannadanna
Periodic Contributor

Gail, I can only speak about my own personal experience.  Essentially, my situation was very frustrating not with my son's illness, needs, etc, but more from the system that never provided for his needs.  My son inherited a genetic disease from his father that we found out about the potential of it being inherited when i was 4 months pregnant.  At 31 i was a single parent needing to work full time to provide for the needs of my child with a progressive disease that was fatal in the long run.  Because my son's disease was rare he did not fit into that fine cut out slot that the state uses to determine criteria for eligibility for medicaid, ssdi, and more.  I worked to keep him home where i could manage his care and well being because i knew there were no placements carved out for him or his needs.  So, school did not have adequate instruction for him or the curriculum he needed, a para professional could not manage his needs for he was medical and guess what if the school can't find a nurse he doesn't get one so i paid to have that for a period of time and then there is more.  Trust me i have all the documentation from here to jericho.  The state well that is the biggest joke of all time.  We employ all these fancy titles to postions but they don't do squat.  In fact, i was also my son's case manager so i knew who was doing what and more.  I updated all parties and my son had 26 different medical providers.  You really have to investigate and do homework when you visit placements no matter what age to ensure that your loved one is going to be able to get the provisions as stated.  Be aware that many places have tours arranged and groups running with upteen employees that are not there when the tour is not scheduled.  There is so  much to be spoken about in regards to these matters, but i can't do it for long periods of time due to my threshhold being weakened and frustrated when i visit these events.  Every caregiver has a different experience depending on age, disease, illness, family support, etc.

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