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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • May 1, 2012

    Use worry time to address concerns, make caregiving easier

    By Angela Lunde

26 comments posted

Alzheimer's Caregiving

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"As soon as I wrote down the words, 'I wish you well' (as a way to remind myself to think it toward those I meet) the words spoke to me personally saying, 'I wish YOU well.' It was lovely."

Those were Donna's words reflecting on the last blog posting on the topic of retooling our thoughts. Through a simple practice called Kind Attention, Donna experienced a softening in her mood and a sense of loving kindness toward herself.

Yet I know from what you share, many of you struggle to find that tiny piece of relief and joy as Donna did. Instead the frustration, grief, resentment and worry create a heavy burden that can seem almost impossible to escape.

Marcia, a remarkable woman and caregiver I know, shared a story last week that she received from a friend. I think it offers a healthy and perhaps helpful message, on stress and worry.

A young lady confidently walked around the room while explaining stress to an audience; with a raised glass of water, everyone in the room anticipated she would ask the question, "Half empty or half full?" Fooling the group, she asked instead, "How heavy is the glass of water?"

Answers ranged from 8 oz. to 20 oz.

She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, my arm will ache. If I hold it for a day, you'll have to call an ambulance. In each case it is the same weight, but the longer I hold it, the heavier it becomes."

She continued, "And that's the way it is with stress, if we carry our burdens (or resentment, or anger, or guilt) all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"So, as is with the glass of water, you have to put down the burden (the negative ruminations of the mind) for a while and rest before holding it again. Every day, make time to put aside all the burdens. Pick them back up again (if you need to) after a time of rest. When we're refreshed we can carry on with the burden."

I have to believe the story Marcia shared resonates with many of you. It's not about getting rid of the burden; it's about finding a way to lessen its weight on you and your life.

Let me offer another similar strategy.  Some of my colleagues recommend a daily practice of "worry time". Most of us would agree that when we're engaged in worry (or other negative emotion) it doesn't really help when someone suggests we stop worrying. On the other hand, if I were to simply suggest that you postpone worry, perhaps you might be willing and able to do that.

Here's what I mean. When worry or other draining emotion begins to consume your thoughts, acknowledge it and then commit that you will give it your full attention during "worry time". Until then, give yourself permission to put it out of your mind.

Worry time then, is a set time of 30 minutes every day.  During this time, you ... well, worry. I also suggest you write down what you're feeling and what's bothering you. It's quite possible that by writing down your concerns you may realize some issues are rather minor.

Next, take the most bothersome issues and begin to think about active, small steps, to address them. Sometimes part of the answer may not be in fixing the issue directly but with finding contentment in "good-enough-for-now" solutions. Or, you may come to the conclusion that there are some things you can't change or control but you can still pay reverence to how they impact you. Once your scheduled worry time is over, stop — you'll return again tomorrow.

There is a resource called the Duke Family Support Program's Tool Kit for Alzheimer's & Dementia Caregivers. The web address is listed below. It includes a list of Caregiver Affirmations. You might decide to look at these during "worry time". Here are a few:

  • I did what seemed best at the time.
  • My choices may be limited and beyond my control.
  • There are no perfect solutions and no perfect families.
  • If I had selected another course of action, I might now be having doubts about that as well.
  • New problems are not necessarily related to what I did or didn't do.
  • I can only do my best and be dependable. I can't do it all.

Duke Family Support Program's Tool Kit for Alzheimer's & Dementia Caregivers: ftp://ftp.tjcog.org/pub/aging/tjaaa/fcoc/caregvr.pdf

26 comments posted

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  • June 20, 2012 9:25 p.m.

    My mother has Alzheimer's and I worry alot about leaving her with someone else while I work part time. I got some very helpful tips from your website about disorientation and confusion. I found a site that offers adhesive signs for the home so that my mother won't be as confused or hurt herself. Very useful. Here's the address: http://www.zazzle.com/artnip I hope I was able to help someone. Thanks for this great blog!

    - Emma

  • June 16, 2012 5:51 p.m.

    My wife is 45 years of age with frontal temporal dementia. By here being so young I'm having a heard time finding her a place to keep her active during the day, while I work. I can't afford the 75 to 80 dollars a day from the places I spoke to. If anyone has any suggestions be or connections please let us know. We live in Philadelphia,Pa.

    - Darrell

  • May 29, 2012 9:38 p.m.

    Thank you Nancy, for your thoughts, I saw myself in your story, My husband has dementia, a year ago, I made the decision to place him in a Nursing Home, and the stresses of home are not an issue anymore, he is less distractive, he is alot more calm, when I seem to understand him, somedays better than others. We do need to take care of ourselves, so we can be their for those we love. The glass of water was a very good analogy. Making the best decisions at the time, were also very helpful, I need those affirmations, because I am in unchartered territory, when I can see my thoughts down on paper, from someone else's journey, it makes me feel, that I am not alone, Bless you all!

    - Jane

  • May 25, 2012 10:59 p.m.

    The glass of water impressed me so much that I made copies & took them to my CarePro Group today. Next Tuesday I will take more copies to my support group. Thank you so much for all the help I receive from this site!!

    - Barbara

  • May 17, 2012 6:32 p.m.

    This is for Terry whose husband has PPA. Try to understand that they are in a total state of frustration when communication is lost. It took my husband about 5 years to lose total communication, starting with mixing up words. During this time, he tried to hide his inabilities from others by making "canned" statements. That's when you know he can't understand you and his surroundings. When this happens, always approach him calmly for general hygiene; let him eat how he wants to and keep your out in public trips to a minimum...others don't understand him and this causes anger. My husband doesn't think anything is wrong with him and gets angry when someone tries to give him medicine, take blood sugar tests, take showers, etc. I hope your husband doesn't have the anger. He is much calmer in a nursing home because the frustrating distractions aren't there. Try to let him have his dignity for as long as possible but understand his total frustration...he thinks we understand him. Good luck and God bless. I found I love my husband more now than ever. I just have to say "I don't know" in many different ways.

    - Nancy

  • May 17, 2012 2:46 p.m.

    To make my job easier I bought a Med-q pillbox. It lights up and beeps and alarm . It has virtuall eliminted her medication mistakes. I recomend it highly

    - Lee

  • May 12, 2012 4:36 p.m.

    I agree with Ella 100%. Mary Ann, you must arrange for other caregivers to come over so you can leave home and do things that you need/want to do. You have to take care of yourself first so you are able to care for your husband.

    - Suzanne

  • May 11, 2012 5:36 a.m.

    I found the glass cup analogy really uplifting. Infact, I saw myself smiling as I read thru. It really made sense and it is realistic. I found it very practical in managing stress, eventhough I am not a caregiver yet but we all go through stress everyday from different angles. Thank you for sharing that thought!

    - Joy

  • May 10, 2012 6:55 a.m.

    I love what Karen said, on May 3 post. This is a Journey, moment by moment. As we move through those moments we may allow stress to seep into our thoughts, maybe anger, confusion, whatever along with worry, however in those moments we can bring them up let them out, release it and embrace the opportunity to love. The analogy of the glass is great. I have found myself squeezing the glass a little to tightly. thank heavens it did not break under the pressure. So once again, I have to put it down when I am aware that I have moved out of peace and into me trying to control something I really have no control over. thanks for all of you who share, it is very helpful and encouraging Adrian

    - Adrian

  • May 9, 2012 4:09 p.m.

    This is for "Nancy" who's husband of 19 years, that has ppa.....my husband who is 54 has just been diagnosed with it too. I wondered if you had any ideas, any kind of help. or what you did, how fast it progresses?....I am 53, and my whole world has just been turned upside down.......

    - Terry

  • May 8, 2012 2:06 p.m.

    I went directly to the Duke Family site and found it easier to print the list. It is very helpful and informative.. Thanks from JK

    - Joe

  • May 8, 2012 1:59 p.m.

    On the husband who refuses to have a sitter: I learned that I can't allow my husband's wishes to rule when they are unreasonable. You are giving him your life. He can choose what he wants to eat and what TV show to watch, but he can't choose to keep you a prisoner. That is not Love. Get a sitter for a short time; leave the house and keep your cell phone on so that she can call for advice. Extend the time to suit your needs. Arrange for her to give him some treats so that she becomes a source of good things. Your husband may choose to sleep when the sitter comes if he isn't interested in interacting. I started firmly saying that this would keep me alive and able to take care of him. I repeated that sentence again and again, calmly, when he said he wanted only me. (Of course you want to be sure your sitter is good.) You need to know in your heart that you are doing the best you can for the both of you. When you know this, your voice will show it. Good nurses in hospitals know how to convey what needs to be done when they enter the room. They don't expect the patient to rule. It took me years of distress to figure it out. I have years of caregiving ahead.

    - Ella

  • May 8, 2012 10:14 a.m.

    Thanks!

    - Donna

  • May 7, 2012 9:22 p.m.

    The glass of water analogy is wonderful. I have been my husband's caregiver for nine years, try to continuously read to learn more about AD and have never seen or heard of a better way to understand the effects of stress. Bless you for what you do to help those of us on the front lines. You are appreciated.

    - Linnie

  • May 7, 2012 8:48 a.m.

    I WISH I COULD FOLLOW THE "GLASS" THEROY, BUT TAKING CARE OF A HUSBAND WITH ALZHEIMERS AND AN 85 YEAR OLD COUSIN, I CAN NOT FIND THAT "30" MINUTES. I HAVE A GREAT SUPPORT SYSTEM FROM OUR CHILDREN, BUT BOTH WORK FULL TIME AND HAVE A FAMILY OF THEIR OWN, SO I CAN ONLY EXPECT AND APPRECIATE THE TIME I DO RECEIVE. BELIEVE ME, THEY ARE ON CALL FOR ME 24/7. BOTH MY HUSBAND AND I WORKED ALL OUR LIVES TO PREPARE FOR RETIREMENT AND FOR THIS, WE QUALIFY FOR NO ASSISTANCE WHATSOEVER. WHEN I WANT RESPITE, I MUST PAY FOR IT OUT OF MY OWN POCKET, AND THIS CAN BE VERY EXPENSIVE. I SEE WHATEVER WE SAVED FOR IS QUICKLY DWINDLING. MY HUSBAND IS A "PICKER" AND HAS BEEN HOSPITALIZED TWICE FOR MRSA IN HIS NECK AND LEG. I WISH I COULD USE YOUR GLASS SUGGESTION, BUT I CANNOT FIND THE TIME. IF ANYONE HAS ANY SUGGESTIONS, I AM OPEN TO THEM ALL. HE REFUSES TO HAVE ANY ONE COME AND SIT WITH HIM SO I CAN GET A BREAK. I AM AT MY WITS END. BUT, THANS FOR THE SUGGESTION

    - MARY ANN

  • May 6, 2012 8:36 a.m.

    Thank you for that wisdom. I have been struggling with stress that is taking it's toll on my health. My husband of 19 years was given to the Public Administrator because his grown children (my step children) did not want to put him in a nursing home. He has Primary Progressive Aphasia so we struggle with small things like showers and changing clothes where he gets physical abusive to those trying to provide the care. A friend told me just 2 days ago "I can't control or do anything about the Public Administrator, even though they are slow with providing his care because they do not know him", "I can't control the judge who made this ridiculous decision either". So, let that go. Don't stress yourself about these things. She says that people or things that get her down so much that her health is affected; she considers dead. I must do that also as you said and put the glass of water down. I am already feeling better so that I can concentrate on what my husband needs now instead of worrying about what I can do nothing about.

    - Nancy

  • May 5, 2012 2:13 p.m.

    I like the glass of water analogy too. I think of techniques for endurance sporting events, such as how to pace yourself. We caregivers all want to stay healthy continually. Our families want us healthy (and happy!) too. Another positive thought I use is, when we take time off to recharge, we need it. For me, when I have fun, I get recharged, so I should not feel guilty about having some fun on my own.

    - Irene

  • May 3, 2012 6:05 p.m.

    Took care of my family and they depended on me to so I tried to be 2 people at once at 2 places so when Mom and Dad died felt like I failed yet wasn't my call yet could not let them go so I struggled with myself recently worried to no support, felt like I was alone had a brother yet was never was there I was close to my Mom and Dad my brother never was, Mom was the rock in the family when she died I took over with Dad with them both I made major decisions and it hurt me cause I'm very sensitive and feeling, did not wanna let them down yet took a lot out of me so I kept on keeping on because Mom and Dad was depended on me cause I was the only 1 they could count on they had no one else because they was raised not to tell about their problems, me to. You could say I'm still grieving and yet moving forward with life, never had support, I did it all! Dad had bone cancer, Mom had dementia and alzheimer's to so I need someone to talk to. kinda miss it caregiving. like caregiving enjoyed it to

    - Lisa Clayton

  • May 3, 2012 4:54 p.m.

    What a beautiful illustration of a temporary "letting go"--enough to protect yourself while protecting and caring for a loved one.

    - Barb

  • May 3, 2012 11:38 a.m.

    Thank you so much! You all are great source of knowledge and compassion for myself and my loved ones. God Bless!!!

    - Vicki

  • May 3, 2012 11:38 a.m.

    The glass of water example was and is very powerful to me. Thank you

    - Julius

  • May 3, 2012 11:25 a.m.

    I used to have a worry tree by the front door. When I entered my home (where my loved one lived with my husband & I for 10 years) I would consciously "hang" my worries on the tree. Picking them up again was optional, and I usually opted NOT to do so. It's just a little trick that can sometimes give permission to stop the endless gnawing of worry, which does nothing but exhaust the caregiver. My home was my sanctuary. I love the affirmations! They are a positive way of dealing with negativity, and if you can focus on them and internalize them fully, can lift you out of despair into a more hopeful, helpful frame of mind. Be kind and gentle to yourself. Care for yourself as you do your loved one, with just as much tenderness. You are a fragile human and worthy of love, too! We tend to forget that if our loved ones cannot give us that appreciation. Let your heart find light and joy in small things, in the present moment -- a flower, a song, a prayer. The journey will have an end, but what's important is how you live it moment to moment. Blessings to all you active caregivers! You are giving a gift of love!

    - Karen

  • May 3, 2012 11:13 a.m.

    You can only do so much.If you can accept where the person is it at it is better for all. Deciding what needs to be done may require us to step away from rules we once followed. Do it, then move on. We are not perfect people. Just caring,supportive and realistic relatives.

    - Barb

  • May 3, 2012 11:10 a.m.

    The support group and talking with someone who has been through the experience of Alzheimer's in the family helps keep me going, even though it seems I realize the sadness of the situation heavily at times.

    - rosemary

  • May 3, 2012 10:38 a.m.

    I find the ideas of lightening the weight/burden of caregiving without denying what needs to be taken care of and the processing of negative energy draining feeling, thoughts and emotions mindfully. As acre giver of my wife, I find practicing daily these easy to do ways of dealing with my ongoing stress.ongoing stress.

    - Jagdish

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