What can I do about friends who don't support my caregiving?

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Q: How do I handle friends who are not supportive of my caregiving journey?

A: You've probably noticed how when you talk to some of your friends, who are not going through caregiving, how their eyes start to glaze over when you talk about your situation. Don't be offended--it seems to be universal. They want to be supportive, but they just can't for long periods of time, because they realize what you are describing is all ahead of them. For now, they aren't there yet, don't want to be, prefer denial--and it is just too unpleasant to listen to horror stories they can't fix. So, just limit your exposure to those people--and realize their caregiving days are probably coming too.

If I had to do it all again, I'd ask my top seven friends if they could handle calling me once a week, but on a specific day. That way, I'd know that the phone would ring at least once a day, instead of feeling alone without calls for days on end--and then seven calls in one day!

And if you're having a meltdown late at night and don't want to call and burden a friend, realize there are many online support groups, forums and chat rooms, where you can vent and vent and vent!  Check out the forums here at Agingcare.com .

Writing about what you are going through will help tremendously to purge it out. Hey, the first draft of my book, Elder Rage, was 650 pages before I finished venting. So, even if it is 3:00 am, I guarantee there are frustrated wide-awake caregivers who are online and venting too. And, guess what? It's daylight on the other side of the globe--and I am pretty sure they have caregivers there too.


Jacqueline Marcell is the author "Elder Rage" and host of the radio talk show "Coping With Caregiving." You can learn more about Jacqueline and find information about her book at www.elderrage.com.

 
 

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  •  Comments 1 to 10 of 21 
 
 

sooz

Give a Hug

Jun 17, 2008

my paralyzed hubby has 6 siblings. its been years since we've seen any of them in spite of my begging with a happy smile and a home cooked meal offer. i have 8 sibs, and its even longer since we've seen any of them. even my parents stayed away. and i'm a good and happy cook in a clean and pretty home. everyone loved my husband, before. now all these years later, our 3 children are in their 30's. 2 of them haven't come to see their dad in 9 months. no christmas, no easter, no mothers or fathers day, no birthdays. NOTHING!! and they well remember the pain of absentees we all felt for so many years. now, they too have followed the[ lack of compassion]path. i am convinced compassion is not taught. its something 1 in 50 is born with. that makes a very sad world.

 
 

wright3865

Give a Hug

Jun 17, 2008

Believe me I understand what you are going thru. When my mother was a vibrant, social, happy person, the whole family would be around. We have a very large family, but now that she has alzheimers, it's like she is contagious. It's lonely for those of us that watch and care for our loved ones. Just note that you are not alone.

 
 

Cat

Give a Hug

Jun 17, 2008

Has anyone else run into family members who no longer bother to send
birthday, holiday cards to their parent because they don't think dementia patients will notice. Human nature continually surprises me.

I sent a package of cards for the whole year with postage on envelopes to one relative that I thought would be willing to sign & send - no go.......guess I'd rather laugh than cry.

 
 

sooz

Give a Hug

Jun 18, 2008

thank you, wright

 
 

sooz

Give a Hug

Jun 25, 2008

well, here's another thought. neglectful child keeps distance for 9 months with nothing acknowledged. healthy parent says 'no card for birthday as i would be enabling your neglect towards her to open and read it. stop in to say hello for a few minutes, ONLY'. does neglectful child have any legal grounds to sue healthy parent for returning a card unread to sick parent? as a caregiver, are there any rights in deciding what to do about bad kids and making decisions about the ill spouse and the lack of personal contact with them. bad kid lives 11 minutes away. any attorneys out there? PLEASE answer. - sad parent

 
 

SusanMyers

Give a Hug

Jun 25, 2008

I love America, please do not take this the wrong way, but when it come to how so many treat thier elders it makes me ill!!! These people are not to be thrown away or over looked. The people we care for have cared for us in one way or another. Yes, they may have made mistakes, but who here has not? Surely not I.
sooz - I know that you are mad with the child that has no heart, but the lady that you have with you, still has the love for her child. Does she not? I believe that I would fake cards to make her smile. I have a brother that will not call our mother to let her know that he is okay. I have a great deal of rage in my heart for him. I have watched what she has done and given up for him. But, if I can pass a little white lie by her and say, hey guess who called to check on you, but you were resting and he did not want me to wake you. I will continue to do so. It gives her a little bit of peace. She even had a legal document that he was to take care of her for the rest of her life, because he bought her house. The house is gone and so is he. Cest la vie. I do not care about him, just her!

And as for the people that don't understand what we do or why we do it, well I feel very sorry for them. I don't believe that any of us have to prove ourselves to anyone. People today have forgotten to teach care and respect. I am old school you take care of your own. If they don't get it then I don't need them. They will never understand the depth of a true love. @->--

Love,
Susan

 
 

Cat

Give a Hug

Jun 26, 2008

You are right about people who don't understand - and just when you think somebody does, you get surprised by urban legends that really do caregivers a dis-service.

Today one of my neighbors caught up with me for a sidewalk visit and in the course of the conversation said he thought I "had it made" - believing that some magical government program is *paying me* to take care of my mom. Now I guess I should take it as a compliment that it appears I don't have a care in the world. My hair is brushed, I know what day it is and I am still coherent after having spent the morning cleaning up poop. I will admit, with technology you can work from home and take care of a parent, so i might appear that I am just sleeping in and doing my nails. But as a single woman who carrys the whole load, it frustrates me that there is this widespread belief out there -

it seems as if these mythical programs such as "paid" caregiving and tax credits only serve to salve the conscience of people who don't want to acknowledge that in our country we have very few programs that adequately address the issue. The few dollars that medicaid programs pay are less than a livable wage in an economy that has $4.50 per gal gas and skyrocketing prices...in housing, food, healthcare - you name it.

Since I am venting I'd like to say that by careing for my parent for free, the government saved $360,000 so far.....I wonder what would happen if EVERY caregiver in the US stood up at the same time and said the same thing. Would it get anyones' attention?

of course we as a group won't - because we are tired and busy....we do take care for our parents / spouses / loved ones because we care - we dont' want people's pity - we are strong and when it comes down to it what does money really matter when we have love and the feeling of having done something good

which is fine and dandy .....except we still deserve the RESPECT that comes with making this decision and performing multiple functions that a whole slew of professionals went to school to learn how do. Maybe we should be awarded honorary degrees - I sure feel as if I have earned my masters in dementia caregiving....

I hope that one day we all do stand up - a virtual million caregiver march that gets the same media coverage and attention of the general public that each celebrity du jour or sports team gets....

Thanks for listening - it reminds me of that old movie Network where everyone started yelling "I m mad as hell and I m not going to take it anymore"

thanks for listening - I feel better alreay - glad I can vent here.

 
 

SusanMyers

Give a Hug

Jun 26, 2008

Cat I just love you. Keep on venting girl. Maybe someone out in the real world will get the message!

Susan

 
 

SusanMyers

Give a Hug

Jul 11, 2008

Thank you for answering my plea for help. How are things going with your hubby and the sibbs? I hope and pray better.

I love you and will continue to pray for you,
Susan Myers

 
 

sooz

Give a Hug

Jul 11, 2008

hi, susan and cat. thank you for your thoughts on our terrible ordeal. my sweet and adorable husband is very aware of the neglect shown by his sibs and 2 kids. i guess thats what makes all of this so heartsickening. the sibs are just gone forever i'm afraid. our 2 kids[in their 30's] are totally hateful and jealous of their one [middle] sister and the fact that we did a simple and legal saftey precaution by putting her in charge of our finances some day. called executor. she is kind, fair and intellegent. they are DONE with both of us "forever" they said. their hate and anger is definately taking its toll on me. my hubby was having a really 'good' day yesterday, so i brought up the 'difficult subject of the 2' and he said he does NOT think of them much anymore and that i should just do nothing and let it go. he is so brave and good. i love him SO much. we have 1 really good and kind daughter. we will just focus on her and her wonderful family. but i will never understand how 2 of OUR kids who grew up knowing compassion and living it daily, can turn their backs so easily on their perfect dad, for such a silly reason. they both married the controlling type people....possibly thats why. thanks again for all your kind words. sooz

 
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