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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 12/23/09

Much has already been said to Caregivers about the guilt they hold in wanting to abandon  the person they choose or are forced to take care of. And who has the audacity to tell them they have no right to be angry because their own plans and goals are, out of necessity, put on hold?

Many caregivers see their lives slipping away as they continue to give and give and give. They  may feel  life is without meaning, that they are leading a worthless existence, that they are powerless, ashamed for feeling the feelings and then  reproach themselves for being insensitive and selfish. The confused and negative feelings seem without end.

As a therapist for over 30 years working with  grief, panic disorder, trauma, EMDR,  it is imperative when beginning the support and healing process, to know the early history of the caregiver. "Why is that and who cares?" one might ask. And one  answer is that the past holds the mystery of our attitudes, feelings, beliefs, opinions of the present as well as of our future.The past holds a memory network where trauma is stored and once stimulated, safety can be created and the present situation viewed in an entirely different way. While it may not change the present caregiving situation , the caregiver is able to view it from another perspective.  Here is an example.

As a child, K, now aged 55 and caring for her mother who is bedridden, was psychologically abused by her mother. She was criticized daily, received no affection, was ignored unless she was being told what to do. She grew up being docile, obedient, hoping for compliments and hugs, always trying harder and harder to be perfect and to be recognized. Many of these early memories were stored in her unconscious brain, and she never saw the connection between her present personality and those early needs. Now K, the only daughter, is mother's caregiver. Now she feels there is no escape, and she still wants to please her mother and "do the right thing".

Until K is able to process those early experiences and relate them to her present situation , she is entrapped in her past.   While her situation may not dramatically change for a while because of her mother's situation, K can begin to  mother herself more and to see other options that will relieve her role as sole caregiver. K can give more to herself without feeling selfish and guilty.

What ideas do you, the reader, have for K?   



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Name: Asiza Percival
Location: Johannesburg South Africa
Date: 12/23/2009
Time: 06:22 AM


My ideas for K: I can relate to K's experience, I too was made to feel worthless growing up, a lot of the time I had to raise myself and my mother was far too busy with her own troubles. When she got MS I was 19 yrs old and I began caregiving,8 years later I had to put her into a frailcare facility because I could not cope anymore by myself. Even after sacrificing my dreams and goals to take care of her she only sporadically thanked me. Overall she expected me to take care of her. Even with truckloads of resentment all I wanted was her approval. It finally dawned on me with the help of friends that I don't need her approval, when that realisation comes I think you're halfway to the healing. So, K needs to come to the conclusion herself, she is not a martyr and even if she gave her life up for her mother completely it would not change her mother's attitude or get that much sought after approval. It would be lovely if our mother's would give us a well earned pat on the back, but if that doesn't happen, then you need to tell yourself that you are worthy. Reach out and get help to lighten the load. If that is not available then explore frail care, old aged homes and find a place that can look after her, and K can still be the care manager. My mother ripped my little heart apart when I told her I was putting her in frailcare, she was not going down without a fight, and if screaming me into submission would do it, then she would. Unfortunately I had made my decision and I simply said: "It's not a negotiation, you are going." Caregivers have to take care of themselves first, and sometimes you have to be hard to save yourself, but trust me, its worth it. In taking charge she will be in a better position to take care of her mother for much longer, instead of burning out, and landing up in hospital herself.

Name: David Levy
Location: Boca Raton, Florida
Date: 12/23/2009
Time: 01:31 PM


After 20 years of dealing exclusively with family caregivers, I would like to weigh in on K’s issues. First, she has a very practical problem – today – right now - she is trapped in a thankless job. The Job description reads: Taking care of someone you do or don’t like, 24/7, no pay, no benefits, no vacations, no sick days, no promotions and your physical and emotional job responsibilities will become increasingly more demanding. You have an immediate task for your own survival, whether you come to the realization that you have always sought and never got your mother’s approval. Many of my clients say the equivalent of, “I haven’t liked my mother since she didn’t let me go to the Prom with Freddie Smith.” So what! Then, like every other family caregiver, K, you need to get down to dealing with the reality that you issues also arise from the 85% of family caregiving that is non-clinical. It’s practical problem solving. Its tough. You don’t have the same skill set for caregiving that you have had for your life up until now. Further, it is tough be practical when you are emotional and involved. In conclusion, I would deal with the immediacy of resolving some of her real life caregiver issues. I would tell her that every family caregiver, “…is entrapped in [their] past,” in one form or another. While K has real psychological issues, family caregiving is not a “disease” and when you get down to the bottom, the only way “out” is to realize there are no “martyrs” in family caregiving, OK is good enough, we all set the bar too high for ourselves, because we don’t know what we don’t know. Few really understand non-clinical family caregiving and it is complex, confusing, complicated and counter-intuitive. Family caregiving is real and it’s here and it’s now. Most family caregivers don’t have the time (but may well have the need) to wait for any other emotional revelations. They need to plan for today and tomorrow and a way to create independence, dignity and quality-of-life for herself and mom, leave the past to the past.


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