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I’m happy to bring you Part 2 of a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

In this second installment, Mara discusses two topics that have likely affected all of us at one point or another – guilt and grief. Perhaps the most important message here, “It’s okay to feel your feelings.”


Caregiver Coping Strategies Part 2 of 3: Getting away from Guilt and Grief

by Mara Botonis

The constant struggle to cope with our grief and our guilt can be just as consuming as all of the actual caregiving responsibilities we have, and often times, far more painful. There are two types of grief, anticipatory grief and ambiguous loss that especially resonate with caregivers of persons with Alzheimer’s and dementia.

Anticipatory grief is defined by the American Medical Association as: “The normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family. Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death.” Anticipatory grief may be a more common occurrence in long or protracted illnesses such as Alzheimer’s or dementia as caregivers fight against a progressive disease from which there is no cure.

The other type of grief common for Alzheimer’s caregivers, Ambiguous Loss is; “characterized by the sensation of loss one can feel when the person you care about is psychologically absent, that is, emotionally or cognitively missing. Such ambiguous loss can occur from Alzheimer’s disease and other dementias as a loved one’s mind or memory fades away.” We know this one all too well, the fact that many times, the very person we spend our whole day taking care of often has no idea who we are. Our shared history, common experiences and years of connection have disappeared into a mind we can no longer access.   We look hopefully upon a familiar face that we constantly scan for a glimmer of recognition, only to be hurt time and time again when it usually isn’t there.

The sad reality is that we are fighting a disease without a cure and the added challenge of feeling so alone at times when doing so can make being a caregiver of a person with Alzheimer’s or dementia an especially emotionally draining and potentially isolating.   Sometimes, it may feel as though these feelings are so strong that they have the power to swallow us up and that if our loved one didn’t rely on us for daily care tasks, it would be easier to simply curl up in a ball under the covers and wish this away or hide from the situation until it goes away.

There isn’t a magic bullet, or easy answer to help us release the guilt or grief, and I’m not sure we need one. It’s okay to feel your feelings.

Here are some tips other family caregivers have giving me over the years to help decrease the stress and guilt and increase their ability to help their loved ones and themselves have better, brighter days.

1)    Stop measuring your worth by what you did or didn’t get done. Stop beating yourself up because of what you said, or what you wish you had said instead. Stop focusing on what you think you did wrong or measuring yourself against an imaginary ideal of the “right” way to do things. There is no such thing. Every person, every situation every moment with this disease is different and can’t be defined by an all-inclusive set of never fail instructions. There’s a reason there’s no Martha Stewart of Memory Care. This disease creates a series of unpredictable moments where solutions that may be considered imperfect in other’s eyes are often the best answer for your loved one.

2)    Not everything is going to work. A number of activities, in fact, might not. So many factors can impact whether an opportunity to engage your loved one was met with any interest on their part. The timing of the activity, their physical and emotional well-being in that moment (fatigue, thirst, hunger, or anxiety level can have a negative impact on them being in the mood to participate). It’s okay to have more instances when things didn’t go as planned than ones that do, plan on imperfection. Give yourself permission to try new things or modify any activity ideas that you read or hear about to best meet your loved ones needs and capitalize on their interests and abilities.

3)    Get a jump start by doing tomorrow’s tasks tonight.   At the end of a long day, the last thing on your mind is probably trying to fit in “just one more thing”. Throwing a load of laundry in the washer, loading the dinner dishes and running the dishwasher or even setting the table for breakfast may be worth the extra effort tonight to give you a little extra time tomorrow.

4)    Look for ways to save time on chores. Try paper plates to decrease dish washing, prepare healthy crock pot meals and make more than you need, then portion out and freeze them into individual meals that can be thawed when needed. When making something (salads, sandwiches, soups, snacks) always try to make extra if it will keep. If you’re going to go to all the trouble of making it, why not make enough for you both to have get a couple of meals from your efforts instead of just one? When doing laundry, put clothing away in sets or in complete outfits. On one hanger have shirt, pants undergarments and socks draped over the shoulder so dressing can be a grab and go event without having to think about matching or searching for each item.

Eason House5)    Life is a series of these small victories, these shared experiences that connect you both despite the disease. Cherish the times when you laughed, played, shared in something that reminded you of a time before Alzheimer’s. Enjoy any experience where even for only a brief breath of time you were in touch with the life that was lived long before you knew what dementia was. Accumulating more and more moments that matter along the way, is more important now than ever before. Every one of these moments is a precious gift to be nurtured, protected and celebrated.

6)    Reach out for help. The Alzheimer’s Association’s 24-hour helpline is a wonderful, anonymous resource that you can reach at: 1.800.272.3900. There are also a myriad of online support groups and Facebook communities such as USAgainstAlzheimer’s, Forget Me Not, and Memory People that offer forums for questions and situation based idea sharing based upon what’s happening at home.

7)    Try to remember above all us, that though we may not be able to change the destination that this disease takes us, we can absolutely improve the journey along the way. Putting quality of life now above all else can help make sure that no matter how many days you have left with your loved one, or how many of those days will be good days, you’ll have peace of mind that you did everything you could to make the days you do have together really count.   Let go of the little things and look at each day as a chance to connect, a chance to love each other while you still can.

IMG_30128)    Remember your role in making sure things stay joyful in your home despite the devastating impact of Alzheimer’s and dementia. You are the most significant activity “supply” or care “technique” in this whole process. YOU. Your patience, words of encouragement, soothing and supportive tone of voice and loving reassurances throughout whatever task or activity you choose to do will have a far greater impact on whether or not your loved one has a good day than any item you can ever purchase and can be more effective than a lot of medications out there. Your attitude and commitment to making sure that no matter what happens, you’ll make sure it retains an air of calm, and comfort is something that doesn’t cost any money, but in the end is priceless. I know that sometimes this is a lot easier said than done.


What’s your strategy for dealing with grief and guilt? We’d love to hear from you, so please leave a comment and share your story.

Stay tuned for Caregiver Coping Strategies Part 3 of 3: Making More Time for Moments That Matter In this third and final installment of The Dangerous Dance with Stress and Guilt series, Mara Botonis will provide tips for finding quality time to spend with your loved one – even in the midst of all the logistical and practical issues you’re dealing with on a daily basis.

Also in the coming weeks, I’ll be giving away a copy of Mara’s wonderful book, When Caring Takes Courage”.