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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 - 10/28/09
As part of my role at the Family Caregiver Centre in Calgary, Canada, I run support groups for family caregivers. 
At a recent group a women shared that her mother-in-law had asked her if perhaps it might be better if her husband would just die. Her husband is a man in his early 60's who has frontal temporal lobe dementia. She reported having responded with some "not so nice" comments and wondered what she might have said that would have been more appropriate. Others in the group concurred that it is not unusual to have people make rude comments to them in relation to the person for whom they are caring.
Do you have any thoughts or can you direct me to an article that will be helpful for family caregivers in the north?
Thank you so much.

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Name: Sue
Location: VA
Date: 10/29/2009
Time: 03:15 AM


The mother-in-law asked a tough question but an honest one. It is one of those things most people just wonít talk about. I think this question goes through the mind of everyone who is a caregiver, knows one or who sees someone they love going through a terminal illness. These types of questions can be hard to understand but it would be better to get her to talk more about this and see why she is feeling this way and why she asked the question. Patience and understanding can go a long way here.

Name: Michelle
Location: Indiana
Date: 10/30/2009
Time: 10:37 AM


You would be best to simply forgive people who would express such painful and rude thoughts for they clearly no not what they do. Some people just don't get it. Every life is precious and there is no true definition for what is "normal". There is no denying that there may be difficult moments when we all wonder if living with so much difficulty is worth it for the person with the disability and the caregiver. However, every life is precious and with caregiving comes amazing love and a chance to express that love by assisting and protecting the one you care for and helping him/her to live the best life possible. It's just important not to forget your own needs along the way and please -- never let rude and heartless people hurt you. I was told once that my mother "made a career out of dying". Absolutely not. My mother had the right to live her life as long as she had the will to try...and I was going to help her and love her every step of the way. Did I hate the family member who said that to me? No, I've always pitied them. Perhaps someday they too will be granted the gift of compassion through caregiving or though their own future illness. Hang in there.

Name: Jane
Location: Kansas City
Date: 10/30/2009
Time: 02:35 PM


Hmmm. Maybe I have not been attuned to these kinds of comments being rated as rude. I look at them - especially when made by family members - as giving me permission not to include that family member in any decision-making. If they think my husband with Alzheimer's would be better off dead, then I have the information I need about how that person thinks; thus, I don't have to consult them when a big decision comes up. One thing I have noticed since my husband's diagnosis some years ago is that my personal view of what constitutes quality of life has changed. As a hot-headed young Social Worker, I was ready to proceed to withdrawal of care quicker than other people I knew. Now, as I watch my husband at the Halloween party at his nursing home, I see him engaging with the children, getting joy out of looking at their costumes, connecting with each one that he gives candy to. I watch him recognize me when I arrive and cling to me when I have to leave. I watch him recognize his children and try to interact with them. He listens as they tell him about their jobs and the grandchildren. He can't speak in sentences and when he tries to talk, he doesn't make sense. But he interacts with his environment and gets some joy from it. It appears to me that he has a quality of life that includes some of those little "moments of joy" we hear about. Would he be better off dead, now? Maybe. But for short periods of time, he has a quality of life that I would not want to take away from him.


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