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Caregiver
Network
News
A newsletter for caregivers of loved ones with dementia
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Coming Soon: MemoryCare Cookbook Project Request for Submissions
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Help us feed our memories! MemoryCare is seeking your family recipes, photos, and food-related stories that stir memories of a loved one with dementia.
Stay tuned for an email with more information!
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This is Part 2 of a 3-part series, The Big 3: Loneliness, Guilt, and Grief. You can read the first two articles in this series, Loneliness and Guilt.
“As I started to wrestle with grief on this journey with dementia, I realize that its enormity has been with me from the beginning. The first sentence in the journal I started a few years back read: ‘Today, I grieved for the first time.’”
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For the majority of caregivers, Grieving happens from the moment you receive the diagnosis. It’s a constant, yet variable presence throughout the journey. Dementia is stealing the person you love, a little at a time, and every time they lose a memory, every time they lose a skill, every time they lose another piece of themselves, you grieve a little. According to Pauline Boss, author of Loving Someone Who Has Dementia, “Saying goodbye to someone who has dementia isn’t a one-time event. You do it over and over every time you see a new loss.”
“I soon realized that I was experiencing a deep grief, and that it was manifesting itself in numerous ways. And when we think of grief and its numerous stages, I can look back and see how I was in throes of my own journey with grief.”
When we hear the term ‘Grief,’ many of us are reminded of Dr. Elisabeth Kubler-Ross’s Five Stages of Grief.
What we may not realize is that there’s a variation to these feelings, a process to be worked through. “It isn’t always just ‘five and done,’ says grief counselor Laurie Hamilton, Ph.D. “It circles back on itself, it starts over or goes backwards or gets mixed up with several at once. We try to categorize ourselves too much by saying ‘I’m in the Denial stage,’ but it’s a moving target.”
Grief isn’t always evident, either to yourself or to others. “Grief is a tricky critter,” says Hamilton. “It’s seldom out there by itself, but is typically layered with other emotions.” Grief can be camouflaged by other, more obvious emotions - denial, anger, fear, resentment, sorrow, loneliness, guilt – but make no mistake, Grief is an ongoing part of the caregiving process.
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“Grief is the price we pay for love.”
- Queen Elizabeth II
Any time we lose a person we love, we experience the pain of loss…but caring for a spouse brings its own particular issues. You are losing a partner, losing a confidente, losing a lover, losing the future of “growing old together.” Pauline Boss describes the relationship as becoming “one-sided.” You don’t give up on it, but you acknowledge that the connection you had is diminished…so you have to settle for a partial relationship because that’s all that’s available. CBS foreign correspondent Barry Petersen, whose wife Jan had Alzheimer’s, says in his book Jan’s Story: “What God has put together, the disease has put asunder.”
“I also have grieved over the fact that I am no longer able to do many of the activities which I enjoyed just a year ago, because her needs and expectations do not allow me to do them.”
The person you love isn’t the only thing you’re losing. Along the way, as their caregiving needs become more demanding, most caregivers have to relinquish activities they used to enjoy but don’t have time or energy for any more. So not only are you facing the loss of the person and your connection with them, but also the life you used to have as well as the future you had planned for. As one caregiver said, “This isn’t how it was supposed to be.” So you find yourself grieving not only for the person, but also for a lifestyle as well as for a future that is no longer possible.
How much you are with this person will have an impact on how you will experience the grieving process. If you see them every day you tend to notice little losses, minor changes, but you may miss the bigger picture…much like the frog in hot water that’s gradually getting hotter. However, someone else who sees the person only every few months may experience a sudden shock at how much they’ve changed. Either way, it’s Grief.
“I accept I am anticipating the grief of the physical loss.”
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Most of us think that Grief happens only when we eventually lose a loved one to death, but the journey with dementia changes that perception. There’s even a specific term for what you’re experiencing: Anticipatory Grief - mourning the loss of someone in advance of their death.
Anticipatory Grief is common among caregivers of anyone with a terminal condition – but it’s even more profound when the person has dementia. Because they are losing the ability to understand their condition, as their disease progresses they will become unable to participate in decisions to be made, leaving you to shoulder the responsibility alone.
Ultimately, you may find that you are simply waiting for the journey to be over – which mixes Grief with Guilt, a double whammy.
“Grief is the filter life is viewed through.
Grief weighs more than any other emotion I have ever held.”
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Grief, sadly, is a natural, unavoidable casualty of loving someone who has dementia. Along its progression, you will, little by little, become disconnected from the person you love as the disease chips away at who they once were. But you should know that dementia attacks only the brain; it leaves the heart intact. So remind yourself that although you may be losing many of the connections you held dear, the bonding of your hearts will remain to the end.
“It is too early for me to tell you that I have now come through the experience and all is well. All is not well. My wife is continuing to fail, there is no sign of a cure or an opportunity to reverse her disease, and my life has been turned upside down.
But I can say that I no longer feel that I can’t do this. I no longer feel that my entire world has been blown apart. Instead I am trying to find ways for us to continue to enjoy one another. I take pleasure in preparing food she enjoys, and finding movies we can both watch, and working jigsaw puzzles with her every day - oh those jigsaw puzzles. Instead of being bothered, I now look forward to her saying, “Come here and look at these three pieces I just found to put in place in the puzzle.” And I go, and I cheer and celebrate with her because it feels to her like such an accomplishment.
And then I might go in the other room, and sit quietly for awhile, maybe shed a tear or two, but then start thinking about what I need to start doing to get our supper ready...
The journey continues.”
MemoryCare’s Resource Center has books about grief and other topics that are available for checkout.
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MemoryCaregivers Network
Peer Support & Education Groups
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All MemoryCaregivers Network Support Groups are currently being held online every 1st, 3rd, and 4th Tuesday from 1:00-3:00pm.
Network meetings are open to the public. Participants will receive a link via email the day before each meeting.
If you are not currently attending a MemoryCaregivers support group, please email network@memorycare.org to join the mailing list. If you do not use email but would like to talk with a support facilitator, please call Mary Donnelly at 828.230.4143.
For more information about the MemoryCaregivers Network, contact:
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Mary Donnelly
828.230.4143
network@memorycare.org
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Pat Hilgendorf
828.301.0740
patricia.hilgendorf@gmail.com
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Mary and Pat are available on the 2nd Tuesday of every month as well.
Contact Mary for additional information if interested in participating.
The Network relies on charitable support to keep its program going.
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A series of six lectures will be provided for caregivers of persons with memory disorders. Sessions are designed to improve caregiver understanding of different aspects of dementia care. The course is led by MemoryCare staff members with guest lecture by attorney Caroline Knox, Esq. |
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2023 Course Schedule
Thursdays from 2:00-5:00 pm
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Until further notice, Caregiver College will be provided as a live-broadcast for online attendance only. The ability to access Zoom through a computer, tablet or smartphone with a reliable internet connection is necessary to attend. If you are unable to attend virtually, please contact us to be placed on a communications list for the next in-person attendance opportunity. Related course materials will be provided via email.
A special thanks to this year's sponsor of Caregiver College:
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Join us for MemoryCare's Adult Exercise Program, led by Tiffany Salido, DPT and Rebecca Carter, PTA. Classes are free and open to the public and will be provided weekly through Zoom for online attendance (choose which day(s) of the week to attend below).
"Whether sitting or standing, my wife and I get exercise, have fun, sing along and drink our water. Tiffany is a Godsend!" - Move for Memory Participant
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This class is intended for people with memory impairment to participate with their caregiver in fun and simple exercises. The exercises incorporate movements that can improve daily activities and general mobility. Group exercise will be approximately 40 minutes, followed by a time to answer questions. Exercises can be performed standing or seated.
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Please note you will be required to read and acknowledge a disclaimer when registering to join. The ability to access Zoom through a computer, tablet or smartphone with a reliable internet connection is necessary to attend. Email education@memorycare.org or call 828-771-2219 with questions.
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Mondays
9:00 - 10:00 am
August 15 through December 12
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Wednesdays
3:30 - 4:30 pm
August 17 through December 14
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Do you need a program for a group event? |
The MemoryCaregivers Network staff presents on a variety of subjects, including Recognizing Early Warning Signs of Memory Loss, Facts and Fiction about Dementia, Better Communication Techniques, and more.
We are happy to speak at your event to raise awareness and knowledge about Dementia. Contact Mary Donnelly at network@memorycare.org
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To see a list of
OTHER COMMUNITY RESOURCES
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A special thanks to the sponsors of this newsletter: |
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Caregiver Network News and The MemoryCaregivers Network are auxiliary programs of MemoryCare. Caregiver Network News is written and compiled by Mary Donnelly.
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is a charitable non-profit organization whose mission is three-fold:
To provide specialized medical care to older adults with cognitive impairment;
to support caregivers with education, counseling, and improved access to services; and to provide community education.
We rely on charitable donations to continue these programs!
Please consider donating...
perhaps in honor of a loved one's birthday...
or a memorial...
or a sustaining gift to support families like yours
who depend on the services that MemoryCare provides!
Make a difference. Make a donation.
Thank you for your interest and support!
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MemoryCare is a 501(c)3 public charity as determined by the Internal Revenue Service, Federal Tax ID: 56-2178294.
Financial information about this organization and a copy of its license are available from the Charitable Solicitation Licensing Section at 919-814-5400. The license is not an endorsement by the State.
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