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Caregivers: Can we talk honestly? 
Started by Jimmie
28 Jun 2012, 11:28 AM
AS the prime care giver for my wife who is suffering from a terminal neurological illness, I have been challenged physically, emotionally, and spiritually.  Though I manage to meet those challenges most days reasonably well, there are times when my love and concern is replaced by a complex of less noble emotions: frustration, anger, despondency, guilt, resentment, and a claustrophobic loneliness.  For many reasons, I do not feel comfortable talking about these emotions with friends or family.  I am wondering if the Virtual Hospice might be a place where such an honest conversation might safely take place.  And I am wondering if others have found or find themselves in similar circumstances.  I suspect so.  Even Mother Theresa, it would seem, had her difficult days.
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Reply by Cath1
28 Jun 2012, 7:54 PM

Hi Jimmie:

It's great to hear from you and I think your new thread is such a valuable topic of conversation! Thank you, Jimmie!

It's important for those dealing with the task of caregiving, no matter how noble the motives, to have a safe and welcoming place to discuss the darker side of the feelings that naturally accompany such situations as the one you so ably describe. As well, I think it's also a good thing for those dealing with illness and/or end of life to feel it's ok to vent honest feelings and frustrations. Without the difficult feelings being expressed we are even more diminished by these hearth wrenching experiences and I know from experience that suffering silently in isolation only magnifies the loneliness one feels. I can never keep my feelings contained for long - the good, bad or the ugly!:-)

I think there is a societal pressure, as well as pressure from family, friends and especially ourselves to try to play the role of the good saint when one we love and/or we ourselves are dealing with serious a health crisis or wrestling with the shadow of death. It's an impossible pursuit when we remember we are all human with all the limitations that implies.

I can assure you, Jimmie, I was neither all saint nor sinner but a mixture of both when caring for and about my Mom. I sometimes deeply resented the time and special care - and yes patience -her illness demanded of me and I often felt like a big jerk if and when I could not meet the demands. I have shed many tears alone. Sometimes it was almost impossible to separate the illness from the person I loved and I would succumb to taking personally comments my mother directed at me. I felt too in many moments regret - wishing I had held my tongue or spoke more gently to my vulnerable Mom when she was obviously not in control of her emotions as her dementia progressed. Daily caregiving requires so much of a person and it takes its toll and leaves wounds that take a long while to heal.

Fortunately for me, I am able to express my feelings without much inhibition and that helped and still helps me to cope with the anger, guilt and sense of inadequacy that at times surfaced and still surfaces - and sometimes quite unexpectedly - from deep within me. Fortunately as well, I was raised by my Mom not to seek perfection in myself or others and therefore I am able to accept my shadow side and know that my dark side is no secret nor should it cause permanent shame as we all struggle with it in some way at some time. I learned long ago that to expect perfection of myself is the ultimate arrogance and even as I write this it makes me laugh because I can be when provoked quite arrogant, but self-awareness is the key to self-forgiveness and humility both, in my opinion. I suppose that doesn't sound so humble, but that is nonetheless a goal I strive to attain.

Jimmie, you are expected to do the impossible on a daily basis which is impossible. You cannot do and say and feel everything as ideally as your dear heart desires, but please take heart that what you do well and the deep compassion you share with your wife - and others - must be the focus because I can guarantee you that these qualities that you as a caregiver possess deserve a more prominent place than any doubts that may haunt you about the less-than-your-best moments. Having said that, it is IMPORTANT to unload these disturbing feelings from your body, mind and spirit so that you will have more room for the positive energy you most need in your situation. Talk, write, share to unburden yourself because in the darkness you are never alone. We all inhabit the darkness with you.

You don't need saintly powers to be a blessing to your wife and others, Jimmie. In your pain and sorrow, your anger and need, your resilience and loyalty, your endless heart that is sometimes tortured with self-doubt, you as a caregiver, an honourable man, a human being that I so admire, in all your wondrously and wicked ways you are an inspiration.

Another person here whom I must say always without any sense of self-importance shares herself so openly and without any hint of elevating herself to saint status is NatR. Her way of relating - very real and down to earth - and vulnerable - often makes me stand silent in awe. It's not easy to admit to ourselves let alone reveal to others our so-called weaknesses, but in my estimation every time someone selflessly risks doing so, they help others to accept their own humanity. Sometimes by expressing our dark side we are best able to find our way to the light.

With affection -hugs- xo
Cath1

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Reply by NatR
29 Jun 2012, 3:49 PM
Hello Jimmie,
Thanks for finding us.
We are a motley crew here - a variety of people who are all or who have recently gone through caregiving, family loss and other challenges.

Cath1 gave you perfect input - she has walked the walk.  She mentioned me and I am honoured.  I am not here to find praise - altho Cath1 you are very sweet.  I honestly have a caregiver heart - but like you Jimmie, like you Cath1, like all of us who are floundering in a situation that has an unknown course, an unknown time frame...it leaves us all wondering How to get through.

I am a caregiver to a family member...a darling grandchild that is a teen but with many delays, a genetic disorder that you cannot fix, that you cannot predict, each child is different.  She is on a waiting list for a permanent group home setting.  It is not easy for me to let her go to that...it is also impossible for me to think I will always be here to care for her.  Its a helpless feeling...its overwhelming to care for others around the clock yet we try...and we fall down...and we kick ourselves for being human.

We all want to be 100% perfect, like Mother Theresa - who on the outside appeared to be perfectly saint like.  I agree with you that she must have had her moments when she said...when do I get a moment for me...how much more can I take...things like that.

You have found a place where you can vent, share, ask, express feelings, and you will find people who will respond and who will understand.\

Feel free to share your real feelings.  I share mine.  As Cath1 said I pretty much wear my heart on my sleeve, my mouth speaks sometimes faster than my head wants it to...but I am only human...like we all are.

Please relax and know you have found a safe place to just be you.  This is Your refuge.  This is where You matter.  Certainly your wife matters, certainly you are giving her all that you can possibly give.  Its also true that we need moments here and there where we can break down, feel the feelings, have the bad moments and then get picked up and dusted off.
 
We will try and do that for you.  Trust me, you are one of us. We all need a place we can feel friendship, understanding, and the ability to yell out what hurts, what saddens, what pains us.

My heart goes out to you today and I hope you know that the people here are real, the people who operate it are trained, competent, caring and only want you, me and all of those in struggles to come and find that refuge.

Sending you strength...from one caregiver to another..
NatR 
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Reply by Tian
29 Jun 2012, 9:40 PM
I think the care giver who has never experienced ignoble emotions does not exist. As a care giver for a family member, I recognize those negative emotions you describe in me, Jimmie. And I think that also applies to professional care givers. I have been surprised by actions of some professional care givers but, recognizing them as anomolies, that hasn't dissuaded me from wanting them to be my caregiver if the occasion should arise. We are all human.
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Reply by KCBJ
30 Jun 2012, 12:28 AM
Hello Jimmie. My name is Barbara and I'm a caregiver for my mother who is now 98. You will find freedom here to express yourself and your feelings without judgement. I've found that here myself.

I've had my mother with me that past 20 years now. Ouch! But in the past 4 years, the dementia and the results of strokes, have made her verbally abusive. Her right hip is toast and yes, she should have had a hip replacement several years ago, but my mother is also stubborn. She's paying for that with 24/7 pain. She also suffers from chest pains and is parially deaf. In brief, i have played the dutiful daughter role of being at her beacon call, even when I'm at work. Luckily, I work only 10 mins from home, and I can drop and run when I need to or even work at home.

I think the feelings we have when we're at a point of mental fatigue for an overwhelming amount of time begin to fester. It starts off small and then one day, snap, something happens inside of us. Feelings that we believe we shouldn't have start cropping up, then the guilt for thinking such things. And it just goes on and on.

Please don't feel guilty about your thoughts. I survive by going out to the backyard with the dogs and having a good cry, giving my head a shake and then starting all over again. Believe me, the thoughts are still there, just not at the forefront for awhile.

I'm now 59 yrs old. I don't or should say can't date. My friends are relegated to seeing me for lunch or if I "sneak" away from work for an extra hour once a month.

My outing is once a year for the Humane Society dog walk. My cell begins ringing after i've been gone about 1 hr. This year I had to cut it short cuz my mother phoned to say she couldn't breathe. When I got home, trust me, she was still breathing. I go to work and come home and repeat the cycle. That's it. Oh, and grocery shopping -- as long as I'm not gone more than an hour. The things that come out of her mouth is vulgar and horrid. So I'm pretty sure that my thoughts aren't much different from yours.

Everyone here that I've been in contact with has been fabulous. Trust in them. 
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Reply by Mark99
30 Jun 2012, 2:08 PM

My wife was diagnosed with NSCLC three plus years ago and died last August. Her illness was hard but we were lucky for the majority of her time she was fairly asymptomatic with most of the physical issues being treatment related. She was a strong independent woman who allowed me to take care of her. But as time progressed on what was a 'You have six months to live' diagnosis she got physically weaker and struggled emotionally. In a way we were blessed, or I was. But it was not unusual for me to feel and experience the same emotions. Toward the end when she was in a lot of pain I would find myself coming home and just sitting on the stoop downstairs unable to face what I was going to face. And questioning my love and belief in her and my love for her. It was very very debilitating emotionally to me to suddenly fear and recoil from her. But I pushed through and did it. On some level I took the attitude, as the Marines do, we don’t leave our dead or wounded behind. This was my cross to bear with love. When she reached hospice it was especially hard to watch her die. 


 


I find that speaking to friends of Donna and mine is okay but I get sick of hearing myself repeat the same refrains and I know it is hard for them to listen. I do see a counselor once a month now and that allows me to organize my thoughts and feelings so I can better respond when people ask about me. In a way I get to speak to someone so I can provide well-considered key points about me and where I am without using friends as a sounding board.


 


Virtual Hospice is slowly replacing the time between visits to counselor to organize and share with people who have the same experiences. When Donna was first diagnosed I tried to join an online support group but found the stories and experiences so horrific I ran in fear that I would live that. Now nearly a year past her death I am able to see beyond the pain in peoples stories and lives and see the person and I’m able to relate and reflect on what I am seeing and hearing. And I hope use my experiences to help others. So in a sense being here is my next step in recognizing the reality of my love for Donna and her love for me. I will not let the pain shadow and diminish my memories. All of them are her. All them make me whole.
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Reply by Jimmie
09 Jul 2012, 12:47 AM
I would like to thank all of you for the genuineness of your support and the warmth of your welcome. Had we actually been in the same room when these conversations took place, I suspect there would have been long periods of silence as we absorbed each others stories.  There is a kinship that is born within those silences.  I am grateful that you would have so generously offered that kinship to me.

I am wondering about the specific circumstances in each of your own lives that provoke/provoked the negative emotions I mentioned.  I am also wondering if you have evolved any practical strategies for constructively dealing with such moments.  I am often physically and emotionally exhautsed by such times.

One of the aspects of my wife's illness that provokes those negative emotions in me is her lack of appreciation for my care.  This is an "innocent" response on her part.  Her illness has muted that aspect of her personality which in the past was quick to recognize and acknowledge any contributions to her welfare that I might have made. Now, I might spend the entire day looking after her personal needs, cleaning up her messes, and trying to construct any number of activities that might make the day meaningful for her - and there are no words of thanks.  In spite of the fact that I recognize intellectually, cognitively the "innocence" of her lack of response, there are times when because of weariness, or loneliness, or impatience, or whatever, I lose it.  Not with her - not externally.  I tend to take all that poison and pour it into the cesspool my heart becomes at such moments.  It all goes INSIDE!  That's one of my "triggers", one of my weaknesses, one of my problems.  I'm not sure, but I suspect you all have had ones of your own.

So...the qustion is: how do/did you manage such moments?  How do/did you manage to detoxify and regain some measure of health, good will, and resolve???

 Jim
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Reply by moderator | modératrice
09 Jul 2012, 3:19 PM
Hi all,

I thought you might find this article published today in the Toronto Sun: Taking care of a sick loved one can takes its toll.

How helpful do you find the tips in the article?
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Reply by NatR
09 Jul 2012, 4:51 PM
First of all, Jimmie, thanks for your honesty and openness.  I think that is the most remarkable first step we can all take to recovery and gain support throughout the trials we face as caregivers.

I also want to thank the Moderator for sharing that very helpful and timely article on caregivers and how to keep going.

The article does have some great tips about finding support, finding others who are going through the same walk we walk.  I agree that connecting on Facebook, finding support groups on other avenues like Twitter is helpful too.  

The other important point for caregivers in that article is to realize that you cannot be all things to all people and to allow yourself time for you.  Something I fight with daily...to give things to myself makes me feel guilty...guilty that I put myself first, guilty that I am not available 24/7 for my family member, guilty that I am even having fun or quiet time for me.  Its really awful how you can get caught up in focusing on others always...and leave yourself in the dust.

As women, we fall into that naturally as we are the parent that stays home generally, stays up all night with sick children, and as women we are expected to do those kinds of giving things...personal care, meal making, drink fetching, watching over...long into the midnight hours...its just part of who we are.  But not being Angels, we have limits.  As Jimmie said..it is really hard to continue to do things daily, endlessly and not get recognized for it.  Not that recognition is why we are doing it for...but that a simple thank you...a simple touch...lets us know that the patient we care for recognizes what we are doing for them, that we give up much for ourselves in order to care for them.

Again, its not why we do it, but a little reaction of gratefulness or appreciation goes a long way in helping us keep going...in a sense..we feel it is received, appreciated and we can feel we Are making a difference.

For me, caring for a family member who cannot speak, who cannot express thanks, or say anything in response to all I do...I have learned that it isnt something I can get from her.  This may be coming out wrong but I hope you understand, dear readers, that caregiving comes from the heart, that it comes from an almost endless supply of energy and desire to make a difference for others..family or not.

Jimmie's words ring with me...because he knows what I know, that in the course of my job, or caring for my family member...many times I was treated like I was "in the way", "not needed", "not appreciated", that the patient was not happy to have me care for them...but in my heart...I plodded onward..knowing full well that my job did make a difference.

But, as time goes on...your energy flags, your desire to make a difference and be there for others diminishes...your ability to care goes away - not completely but your life force goes down as you give and give to those in need...without the response that keeps your batteries charged.

Even when others say...you are doing a great job, I couldn't possibly do what you do...you are exceptional, you make the day better for your client or family member...after awhile...all those pat phrases that do sound good...just arent enough anymore.

Then we find out...days, months and years into the burden we carry...that we are now suffering burnout.  We cry, we cant function, we cant sleep, we cant do the job the way we once did.  We lose our energy, we lose our ability to multitask...everything takes longer...everything seems that much harder to do....we are no longer effective as caregivers, as spouses, as family members.

This is my idea of it anyway.

I have spent the past few months trying to recover some balance in my life.  It is working...I look back on the recent weeks and realize that I AM better because I have backed off a bit, I Have taken time for me...I have learned that I Need it, I deserve it, and I am entitled to it.

To Jimmie, to all those who are walking in our shoes...caring for a loved one, not receiving the love and appreciation that does help so much in keeping us going...I say...be Selfish...just a bit for you.  Be Proud of taking some time for yourself.  None of us are super human, although we think we are.

We are all dealing with the same things...lack of sleep, lack of affection or appreciation  or love from the family member who has changed, who no longer can express their thanks for what we do...and we do it all For Love, With Love...and because we care.

We deal with a load that other people would and do walk away from...because not everyone can do what we do.  And, having said that...we still are human and will fall by the wayside if we don't take care of ourselves.

The best way I know to deal with the long hours, the energy it takes to help feed, care for and comfort a sick or dying loved one...is to keep strong ourselves.  Allow yourself to take care of you too!  Allow yourself to be recharged by friends, by group support, by family support...and most of all, walk away for a few hours or a day or two and don't beat yourself up about it.  Even when it is a paying job, and your clients are not your family, you still get burned out, you still run out of steam.

So, as family caregivers...do reach out and express your feelings..forums like this are a gift to me.  I read notes from others...and realize I am not alone.  I realize I can look after myself and not feel selfish...that I deserve just as much care and love and support as the person I help...and that comes from our family, our friends and our forums, our groups.

The other tip that is helpful in that article about caregiving is....Do write your thoughts down, do journal what you do...it kind of helps me realize...exactly how much I do do, how much time I spend, how many hours I put in, and how much it honours my family member or client.

We are not worthless...we have great value.
We are pretty amazing individuals...and we deserve some maintenance time too:)
Everyone gets holidays, every vehicle needs a tune up or maintenance, even machines have to have regular inspections in order to be operated safely.....so think of you:)
How much more do you matter...than a machine:)

Jimmie, and everyone else...you are all amazing people.
Keep smiling, and take that break...your loved one will thank you for it;)
Best wishes,
NatR

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Reply by Cath1
09 Jul 2012, 5:55 PM
Dear NatR:

Thank you for your positively brilliant and bravehearted post!

I don't have time to write a fitting response to Jimmie in this moment, but I will deeply consider his question and all the great contributions to this thread and will add my thoughts later when time meets up with me. Thanks to you all, I won't have to travel far to find inspiration!:-) 

With affection - hugs- xo
Cath1  


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