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    Angela Lunde

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  • Alzheimer's blog

  • Oct. 16, 2012

    Mindfulness key component in compassion for self, others

    By Angela Lunde

18 comments posted

Alzheimer's Caregiving

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The responses to my last blog posting were validating, insightful and inspiring. I'm so grateful that we have this venue to recharge with one another and offer much needed support and perspective in both caring for someone with dementia and being a person living with dementia.

I sincerely hope Craig's words from a posting he made a couple of weeks ago resonate with each of you. Craig is a terrific man I know, and as he shared in his posting, he's living with Lewy body dementia. Here is some of what he wrote:

"I still have abilities. I still have contributions. I still have opinions. I still have regrets — mostly that I am written off, and the system gives everyone permission to do so. I still enjoy doing fun things. I still enjoy ... most anything ... I know that I am a burden, but help me stay as little a burden as possible for the longest time possible. That's right, Address ME ..."

Also, I want to echo and shout out what Wendy recently offered when she said that this vital cultural shift must be about a "quest for compassion." I'm with you Wendy — embracing persons living with dementia as a society and within communities remains our ardent quest. We must act with compassion.

For most of us, we probably think of compassion as a virtuous way of expressing care, concern or empathy toward the suffering of another individual. Yet, I'd also like us all to think for a bit about compassion toward one's self. Because the truth is, until we have self-compassion we won't be able to bring it to others.

Kristin Neff, Ph.D., in her book titled "Self Compassion" (2011), says that self-compassion involves three core components:

  • It requires self-kindness, that we be gentle and understanding with ourselves rather than harshly critical and judgmental. I believe that both caregivers and persons living with dementia tend to be very hard on themselves. Often they think that they aren't good enough, not worthy, or feel that they are not living up to some perceived expectations. They may believe they are a burden, feel inadequate, or sense that society makes them feel so.
  • Self-compassion requires that we feel connected with others in the experience of life rather than feeling isolated and alienated from others and by our suffering. To some degree, this is where family, friends, support groups, specialized programs and perhaps even this blog or newsletter can help. But as Craig and so many others recognize, we have a long way to go to eliminate the isolation and alienation that many caregivers and persons living with dementia experience.
  • Self-compassion requires mindfulness. I think of mindfulness as the act of being fully aware of our actions, our thoughts, feelings, and surroundings, as well as our interactions in each moment. Mindfulness is about identifying all feelings in a way where they are neither suppressed nor exaggerated.

A number of studies suggest that when you bring feelings into awareness and describe or name them you diffuse the negative energy that accompanies them. In other words, mindfulness can help us live with less emotional reactivity and turbulence and move toward calm, perhaps even more happiness.

In a recent Huffington Post article titled "How to Best Help Alzheimer's Caregivers — Teach Them Mindfulness," author Marguerite Manteau-Rao describes mindfulness as "the cultivation of intentional moment-to-moment awareness, without judgment ... mindfulness slows us down and takes some of the edge off our reactive tendencies." I'd say this includes being aware of our natural tendency to view a person with dementia as less competent or a lesser person.

Mindfulness brings with it the ability to see the person living with dementia as a whole being. When this occurs, the relationship between the caregiver and the person living with dementia can transform into one of reciprocity. And then, an incredible shift happens. Instead of an encounter where there is a caregiver and a care receiver, there is simply a caring relationship. An interconnectedness takes place between two people and compassion is born.

More about the practice of mindfulness next time.

"If you want others to be happy, practice compassion.
If you want to be happy, practice compassion."
- Dalai Lama

18 comments posted

blog index

  • December 10, 2012 6:12 p.m.

    This is underlining what I have discovered. People around me think I am so brave coping with my husband's Alzheimer's but I am not brave at all. I hope that NIck will feel love surrounding him and find some comfort.

    - Tesha

  • October 25, 2012 11:08 a.m.

    "When you've met one person with Alzheimer's; you've met one person with Alzheimer's disease" was in an early blog. I am wondering if you still feel the same way? I am amazed at the similarity of symptoms and issues of the people with Alzheimer. As well as the similar issues for the caregivers. With this blog I no long feel alone or experiencing uniqueness.

    - Marie

  • October 25, 2012 4:16 a.m.

    to Mat: When you do all the things in the daily life your feeling of guilt goes away. Because you are doing what you can do. The feeling of guilt is not the rigth way. It is a proofment and not a feeling. And a proofment is to do all the things you can do. In time you do more, and in the other not so.It is normaly for all human. I wrote a book Rediscovery Recover. I am a caregiver for long time.

    - Susanngab

  • October 24, 2012 10:06 a.m.

    my problem is the feeling of guilt. I still try to maintain my activities but it is very much a problem.

    - mat

  • October 21, 2012 8:57 a.m.

    Mindfulness is such a lovely thing.It's a pity that in today's age,it takes a serious illness to make us even think of it.It should be done as a matter of course.

    - sanjit

  • October 20, 2012 10:04 a.m.

    I have a sister of 90 yrs of age and I am her care giver. For the past three years I have done my best to help her, explain "why" things are happening like when she says her apt has two bedrooms and it has only one. I keep my comments simple but it has took me all these years to get it thru my head that my help is just that..help. She wants to "talk" and be "heard " so I give her that honor and respect her for what she says. Sincere compliments mean allot to her. Yes, I feel really bad when I spend a little or allot of time with her and walk away feeling like I didn't get nothing out of our conversations but then I stop to think what does my conversation do to her??? She has feelings that she can't completely express and yet she is so happy just to see me or talk to me. It took me a long time to figure out I am her connection to this world. Her past she remembers, her today and future bothers her. I am happy to be her sister and love her dearly. Yes, it's hard on us caretakers but I do stop and think of how hard it is on them. I am learning from her and that's a rich lesson that you cannot learn from a book. I'm saying this for myself and for others...don"t give up hope because we learn a little bit from everyone that touches our lives and that makes us "RICH" Millie 8fx84y

    - millie

  • October 19, 2012 1:21 p.m.

    I cant get any support groups to help me with my wifes Alzheimers dementia. Iam told I get a federal retirement after 33 years. I dont have any more money to pay out. BROKE

    - Nick

  • October 19, 2012 12:17 p.m.

    We both went to the Neuroligist c couple of days ago. We both are caregivers to each other-his mild but progressing Alzhiemers and I have fibromyalgia, which I also have memory problems. We have different Drs. He was given a question answer test, which at first seemed ok but later not so ok. I was asked who did the finances, which he looked at me and I said both. Certain bills go to him but I have started opening mail, sorting it, then write on the envelope what is due and how much. Then I said how we helped each other doing our many pills in the weekly boxes. I think it made him feel better that he was contributing. He feels tired all the time and takes a lot of naps. He consented to a sleep test and perhaps use a CPap. Hopefully this will make him feel better and maybe think better also. I really like your newsletter. Thank you.

    - Marge

  • October 19, 2012 11:34 a.m.

    Dear Bonnie - My heart breaks for what you are going through but I know exactly where you are now. This can be a dark time but this too will pass. My mom is now gone too but we spent the last 4 years of her life together with me as her primary care giver while she dealt with Alzheimers and she as my gift from God. I also suffered with guilt but please know that you were the best daughter you knew to be to her and that she did somehow know it and love you for it. You are to be commended for all you did for her. Their lives as well as our own are in God's hands and what God knows about you is that you were a compassionate and loving daughter to your mother. I can't say that often enough - please try to know this. It will help with the guilt. There are no text books to tell us how to deal with the memory loss - books can suggest but each Alzheimers sufferer is unique. You did your best, I am sure.

    - Pat

  • October 19, 2012 7:40 a.m.

    I just read the words of Craig to my husband with dementia and asked if they were his feelings. He said "Yes, and it brings tears to my eyes." Thank you Craig.

    - Genie

  • October 18, 2012 4:22 p.m.

    Dear Bonnie - Not even knowing you, I can sense from your letter that you are a compassionate person and did the absolutely best job for your mom. For that I WANT TO THANK YOU. You are appreciated not only by your mom, but by us who can share in your feelings and grief. When it comes to "family" wanting belongings after moms death to this I always remember sometimes LESS IS MORE - give your sister all she wants - because you have IT ALL ON THE INSIDE MY DEAR. Love n hugs

    - Sherry

  • October 18, 2012 4:07 p.m.

    Hi Angela, I totally agree with your reflection that compassion is at the core and that as care givers, we can not give compassion for our loved one if we do not have it for ourselves first. I find that most of us do not know how to have compassion for ourselves. It is not something often taught in our culture. It sounds like feeling sorry for ourselves or that putting our own needs before our loved one is selfish. But, I think feeling sorry for ourselves is a different thing. It leads to feeling like we are victims and it lead to self centeredness. It makes our world smaller. Whereas, when we truly have compassion for ourselves, it expands us and makes us more loving towards others, including our loved one. And, in that sense, it is not at all selfish.

    - Tom

  • October 18, 2012 4:01 p.m.

    When I read Bonnie's comments, they really struck home. I recently placed my mother in a memory care unit, in an assisted care facility. Mom loves the memory collages that are on the wall. . . groups of family pictures. But when Mom asked me, "Why don't they come and see me or call?" I had no answer --only the sadness of the feelings for my mother. In the process of selling her home and emptying its contents, I have been asked for gifts -- things Mom would leave to individuals when she died -- but she's not dead yet. I am ready to put things away for that time to be passed on to those she loves; but again, it hurts to see others treating mom as if she has passed on when she has not.

    - Baybreeze

  • October 18, 2012 3:26 p.m.

    We live inspite of knowing that death is certain. We care inspite of knowing that our care towards patient is going to waste. passin each others time happily is ultimate aim of living.

    - Nagraj

  • October 18, 2012 3:05 p.m.

    The dialogue with an AD person is very difficult for many of us caregivers as the need for extreme patience, empathy, and love is not easily achieved. The ability to abandon guilt, anger, sadness, and hopelessness is tough......but that is what need be done to bring a positive, sensitive, and giving attitude as caregiver. This is our most important task.....being present and positive. Courage and prayer are key elements.

    - John

  • October 18, 2012 1:34 p.m.

    My mother is with God now. I reflect back to the past 3 years of care I gave her. Reading this blog has helped me to see that I was not alone. Others live the same life and deal with the same struggles I have. Guilt has been a common denominator. The guilt is unfounded yet it is very real. The dilemma: If what I do today can allow my mother to live another then why can't I continue to do what will allow her to live forever? I came up short. She is gone. Guilt? Sure, I have guilt. Maybe if I had done something differently, she could have lived a little longer. Another day would be nice. I miss her. I thank you all for understanding what life is like caring for another person. It isn't easy and any kind expression of appreciation was always welcome. I am profoundly hurt that that appreciation does not come from my sister. None. She will not even speak to me. We wants her inheritance, NOW. Okay. I'm a big girl, I can deal with it/her. But she truly took the joy out of Mom's last 2 years. This scenario is all too common.Now I feel angry and hurt. What gives people who will have nothing to do with the elderly the right to demand ANYTHING in the end? Is it our fault we do not demand help? Maybe. But to demand help would only turn that guilt we have over to the one in need. For me: I will purchase long term health insurance. A nursing home is the only option for me.

    - Bonnie

  • October 18, 2012 11:51 a.m.

    I've been reading your blog for the past year since moving Mom to a memory care assisted living unit. It was the hardest thing I've had to do and felt terrible the next morning when she called and asked "What did I do so bad to be locked up like this?". But, after a couple months, she adjusted to the 24/7 care, daily routine and activities. And, I have finally come to practice "mindfulness" and not be so reactive when she can't remember things, can't express herself. Yet, at age 93-1/2, she still smiles, dances and is helpful to those around her and wears her pearls daily. I wish I could have been less judgemental earlier and felt the need to always make everything "right" for her. Blessings and thanks to you and others as comments and shared experiences have helped me a lot.

    - Dee

  • October 17, 2012 3:40 p.m.

    We are on the MARATHON with you! Your team set up the RUN for the CURE along with other groups but you are Leading all of us to LOVE ONE ANOTHER AS OURSELVES, disease or no disease! HOW UNREAL! TRANSFORMING MINDS AND BODIES AROUND TO A NEW FORWARD IN WHAT WE HAVE CALLED A DISEASE PROCESS... MAYBE IT'S FASHION FORWARD BRAIN DESIGN! Results in ART, MUSIC, LOVING COMMUNICATION..."TOP OF THE WORLD"...now to be looked up to not isolated! HOW CAN WE EXPRESS TO YOUR TEAM HOW GRATEFUL WE ARE OUTSIDE OF DOING IT! Please explain to us about the HAIL Program? HABIT? Met a couple that spent an intensive time with HAIL, and just laughed and said it was the best thing they had done for themselves as a couple as well as personally since they married each other 57 years ago! Looks like we all need the training...happy, laughing, and holding hands! Now we all need to join in this TRANSFORMATION to share it with the the world all together. Fashion FORWARD BRAIN WIRING DESIGN, A NEW GIFT one can't buy!

    - Kristna

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