Caring for Caregivers

Caring for Caregivers

Posted by Dan Gottlieb on Dec 23, 2015 12:47 pm

Every one of us knows a family caregiver. Maybe it’s someone you love and maybe it’s you.

I recently had a meeting with a father of a 22-year-old man with autism. He has been the bulk of the last 22 years trying to find services that would help his son get along better in life. And he has spent the bulk of those years trying to make the world better for those with “special needs”.

When I asked him how he was, is quick response was: “I’m good”. But when I asked him if he was physically and emotionally tired, he said he was exhausted and has been for the better part of these last 2 decades.
When asked further, he also agreed that he felt frustrated, sometimes angry, scared, helpless and guilty. That he always felt more or less guilty.

And yet he said “I’m good”. And at that moment, he didn’t even know he was exhausted. Many caregivers have told me they are actually afraid of knowing what they really feel for fear they would just go to bed and never get out.

Caregivers have a tendency to expect themselves to do things they just can’t do. Tell themselves if only they worked harder, had more hours, maybe were more creative or and energetic, they could finally make the world better for their loved ones.

I invite you to take a moment and just experience your own body and not just that of your loved one. This body that you may have pushed beyond reason. This body that is tired and needs rest, care and compassion-from you.
So please tell us a bit about your life and what your body/mind needs?


Re: Caring for Caregivers

Posted by zuzu on Jan 8, 2016 4:21 am

I need someone who will care for me.  I need someone who will listen to me, make decisions for me, make me feel safe and protected.  I'm tired of no one listening to me, tired of making decisions, tired of being the grown up, tired of being the one that everyone looks to when a problem needs to be solved.  I want to be rescued.  I feel so alone.  It's a difficult time right now.  I need to be healthy, strong, calm, rested, peaceful, relaxed, confident, in control, assured.  I don't have time to be depressed again.  Carry on.

Re: Caring for Caregivers

Posted by Bill on Jan 12, 2016 10:28 pm

Hi Zuzu,

My name is Bill Cawley and I am the program manager for the Reeve Foundation's national peer mentoring program.  We know first hand the challenges of care giving.  We have caregiver peer mentors all over the country that may be able to help you.  If you would like to learn more about the program and/ or discuss talking to one of our peer mentors please let me know- you can email me at

One of the best things you can do for yourself and your loved one is to take care of yourself.

Thanks and take care,

Re: Caring for Caregivers

Posted by zuzu on Jan 14, 2016 4:03 am

Hey Bill, 
I will contact you in the next day or so, but I wanted to make a public post in reply also.  I appreciate your offer of peer mentoring as I understand how helpful that can be.  But I'm not new to this situation and I seriously doubt that anyone will be able to help with the sticky wicket I'm dealing with at this point in life.  It's one of those things where I've got to pull up my boot straps and keep on moving forward.  

Our family has been on this caregiving road for over 13 years, and it's not getting easier, it's getting more difficult.  None of us are getting younger, we are running out of money, options and ideas.  The people in my life aren't coping any better with the choices they have to make and I'm always the bringer of reality and bad news.  The more I try to seek, find, ask, search, beg, the more I find the answer is "no."

I'm open to possibilities, so I'll give it a go, but I have to be honest and I do not expect to find anything new or any positive answers to questions I've already asked for my mom, my friends, or myself.  

I was in a realistic frame of mind when I saw Dr. Dan's question and I answered honestly at the moment about what I thought and felt.  I'm currently taking a caregiving consultation course and was asked a similar question tht I didn't feel as comfortable answering, because it was, "What makes you angry?  What do you get angry about and how do you deal with that anger?"  This question was more to the point for me and allowed me to focus on how I feel right now about the last years of caring and the ones I know are ahead.  Sometimes I feel at peace with the knowledge, but sometimes I just want, need, to know there will be someone who will tell me that everything will be ok, that everything will turn out fine in the end and I will have given good guidence that was in each person's best iterest.

It's hard to feel good when I know that my dad needs help but can't get it because we've run out of money, can't afford to privately pay, Medicaid qualification means nursing home placement and/or an impossible income for them to live on, there are no community services available, no one gives free help, there are no churches, family, neighbors, charitable organizations, fundraisers.  It's not going to happen.  And this is trud for others who are young people, in danger of having to be placed in a facility or having been in a facility with dementia people for years when they should have private care.  It's all horrendous to watch, year after year.

I don't understand why there hasn't been a fundraising/monetary push for in home caregiving assistance like there has been for research, because until there  is a cure therer will always be unsupported caregivers who need immediate help and assistance and are not getting it right now at home.  Someone needs to help them because they are desperate.  

Thank you Bill, I will be in touch.

Re: Caring for Caregivers

Posted by Dan Gottlieb on Jan 27, 2016 3:49 pm

Hi zuzu,

I'm glad you were asked about your anger. Anger is a reaction to injustice. And Lord knows you have been experiencing injustice for nearly 15 years. As I read your latest post, I was angry. Angry at what you are living with, your lack of resources, your exhaustion and your apparent inability to care for yourself. Angry.

Anger can motivate us to do something, to raise hell, to get services we need. But if we don't get what we need, the anger itself can poison us. Even if the anger seems appropriate.

I am sure there are times during the day that you laugh, that you rest, that you feel joy. Just like there are times during the day when you wonder how you can make it another hour let alone a few years.

I don't know enough about your situation to understand what could happen to your family in the long run. But I sure hope that you can be aware of those moments that are pleasurable and savor them.

I wish you had the resources to learn yoga or mindfulness meditation. Both of those are really rejuvenating and help you settle down. If you know of anything where you live, that would be great. If you are interested in trying to find something, I will be happy to help look around for you and with you.

Caring very deeply for you and your family

Re: Caring for Caregivers

Posted by zuzu on Feb 2, 2016 1:57 pm

Dr. Dan, It's all good.  I have put this frustration and irritation at the system to work for positive things.  I know that the experience and knowledge I've gained through the years of caregiving and life are helping people now.  I know that's the reason I had to go through the process and appreciate being allowed to see the positive benefits of helping others (this sounds like a beauty paegent speech).  What's hardest for me is that I know I have to accept that some issues for caregivers will not change, but I can help people navigate the system in a way that is most helpful for them.  It feels like settling, but I think that's my purpose.  I see it as a challenge.  Thanks for your suggestions.  Deborah

Re: Caring for Caregivers

Posted by Dan Gottlieb on Feb 24, 2016 3:47 pm

I recently had a session with a couple, the wife was in a wheelchair because of spina bifida and another autoimmune disease. She has major medical problems and requires a great deal of care. Mostly from her husband.

In our first session, she talked all about her fears and insecurities. She talked about her guilt about needing so much from her husband. And she also felt anger and resentment about what was happening to her. We spent almost the entire session talking with her and her husband said almost nothing.

When I spoke with him the following session, the first thing he said was: "I don't want to talk about myself, look how she is suffering". And so it goes with caregivers. I've heard too often that they don't feel entitled to complain or even relax or take some time off.

And yet, in many respects their job is as difficult as the loved ones they are taking care of.

I believe strongly that those of us who are in the receiving end of care, have an obligation to our caretaker. We have an obligation to care for them. To give time and space to listen to them as they talk about what their lives are like. To express love and gratitude for what they are doing and not just complain about how difficult it is for us.

We must act out of love and gratitude. And when our caregiver needs some respite, feel grateful that they are taking care of themselves. Of course when they leave it's stressful, but it's an act of love to see anyone we love take care of themselves.

So let's take care of our caretaker's. I would love to hear your thoughts about this

Re: Caring for Caregivers

Posted by Dan Gottlieb on Mar 23, 2016 3:08 pm

What is the responsibility of those of us who are being cared for?

Sure, we know their responsibility-to care for us, help us live our lives as fully as we can. And to do that when they are exhausted, depressed, and may have never had a chance to mourn their losses because our needs were so demanding.

So what is our responsibility to them? I learned this lesson the hard way.

When I had my accident, my young wife was with me almost every day during that very difficult 6 months of hospitalizations and rehab. She was my lifeline.

And because I felt more safe with her than anyone else, I told her about my pain or my worry or all of the other ways I suffered. And that's pretty much all I told her.

6 or 8 months later, I went back to work part-time. I felt good that I was able to function pretty well. Felt good that I was able to reestablish work relationships.

And then I got home. And Sandy heard more of my suffering. I didn't tell her about the details of a good day, I told her about the darkness.

I didn't tell her the good news because I was afraid no one else would want to hear the bad news. And being so scared, vulnerable and almost childlike with my neediness, I almost wanted her to take care of all my fears.

I never asked her how she was. She was a 30-year-old woman with 2 small girls. I could still take care of my girls, but I never took care of Sandy.

Fast-forward 30 years and I am now with a woman I adore and who adores me. I've learned my lesson. I watch her face when the pain feels unbearable. It hurts like hell, but I know how it feels and I know it's just pain without great stories of what it means. But Joan suffers terribly. And I must do what I can to care for her.

Our caregivers suffer. See need space and they need nurture. They need understanding and compassion. But most of all, they need to be loved. But loved in a way they can feel it. And feeling love inside and repeating the words "I love you", may not help the other person feel loved.

Touch helps someone feel loved. And even if we can't touch literally, we can touch with our eyes and our expressions.

The act of caring for our caregivers is healing for them, for us and for the relationship.

Love to hear your thoughts and experiences

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