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Caregiver
Network
News
A newsletter for caregivers of loved ones with dementia
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Starting on September 15, 2022, MemoryCare will be providing an educational series designed for caregivers to learn more about how to care for themselves and their loved one affected by dementia. Courses are free, open to the public, and will be presented as a live online broadcast. |
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September 15, 12:30-2 pm: Dementia and Driving Safety: When is it time to stop driving?
September 22, 2-3:30 pm: How to Choose and Transition to a Long Term Care Setting
September 29, 2-3:30 pm: Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey
Click here to learn more and to register.
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This is Part 2 of a 3-part series, The Big 3: Loneliness, Guilt, and Grief. To read Part 1 (Loneliness), click here.
Guilt.
Guilt for being impatient with my loved one.
Guilt for getting annoyed with my loved one.
Guilt for making mistakes.
Guilt for feeling resentful about the person I’m caring for.
Guilt for what I didn’t do.
Guilt for what I DID do.
Guilt for losing my temper with others who are just trying to help.
Guilt for wanting to take care of myself.
Guilt for not taking better care of myself.
Guilt for feeling relieved when the caregiving journey ends.
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Feeling guilty is a common theme among those caring for a person with dementia. Studies have found that while caregivers experience many different emotions during their caregiving journeys, Guilt nearly always occupies the Number One slot.
“I feel frustrated by the unpredictability of his state, then I feel guilty for having those feelings and tell myself "you should just appreciate his best states and let the rest go." My life feels out of control in repetitive, nagging ways that add up to what amounts to big feelings at times. This happens frequently, multiple times in a week.“
“My experience troubles me as my husband is in the MCI stage, and I'm already tired of it (and of him). I find I'm not empathetic most of the time and am still wishing that his disease wasn't what it is. I miss the caring guy I married who shared in all life's responsibilities. And, I miss feeling the loving way I have always felt about him.”
“I feel guilty when my husband is ready for an activity and I have something that I feel I have to do. I tell myself that I need to do this job now then we can go or do something. It makes me feel very guilty seeing him sit there.”
Guilt seems to come at us from all directions:
· other family members who may criticize our decisions,
· other caregivers who seem to have a better handle on things,
· well-meaning but oblivious friends who make careless comments,
· medical professionals who present unworkable or impractical options,
· the person in our care who is struggling…
…but actually, when you think about it, most of the Guilt we feel comes not from others but from our own unrealistic expectations of ourselves.
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“I don’t want my mother to live with me again because I just can’t handle being a full-time caregiver for her while trying to maintain my marriage & raise my 4 year old daughter. Am I being a good daughter?”
“More than guilt, I fear a future filled with “remorse.” Knowing that I did what I thought was right would probably allow me to avoid guilt. But remorse from deciding on a solution which turned out to be wrong for my wife would make me feel “remorse.” Remorse and guilt – 2 different but closely related emotional consequences of presumably good intentions gone away.”
“Recently my husband appeared to be having a heart attack. After calling 911, while waiting for the ambulance to arrive, I was hoping that maybe he would die from this -- and what a blessing that would be rather than a slow gradual decline for the next 2 to 4 years. But he did not die. And now I feel guilty for hoping that he would.”
Caring for a person with a cognitive disorder is hard. As much as you may love the person, becoming their caregiver can be frustrating, stressful, and emotionally exhausting. It’s a lot to take on. Most caregivers don’t receive specialized training to do this job, yet they are expected to take it on without pause, without preparation, and often without help.
But where is it written that they must do it without making a few mistakes?
“Yes, I do feel guilty sometimes. When I think of something that I might have done to help my partner, after the fact. Things like that. But more importantly when I get frustrated, impatient, say something I didn’t need to say.”
“As a caregiver, feelings of guilt are a part of my everyday experience. There is always some point in the day when my spouse's behavior catches me off-guard, or at a time when I am maximally stressed, and I say something/react in some unhelpful way that I immediately regret.”
“Guilt is like regrets, I have a few. Neither helps move me forward, but it is constantly there to trip me up.”
Think back to other times in your life when you took on something new. Did you do it perfectly from Day One? When you made mistakes (and all of us do), did you feel guilty? Or did you chalk it up to inexperience and say, “OK, I learned from that one, next time I can do it a little better?” And how many times have you told someone else, “You should lighten up on yourself, nobody’s perfect?”
It’s human nature to be hard on ourselves, to be our own worst critic. Caregiving adds more weight to the load, largely because what we do affects another person – a person we care for in every sense of the word.
“I feel guilty when I lose my patience when I know I should be able to step back and take a deep breath and be compassionate or calm but my irrational mind hits the wall and I become impatient so it is something that creates guilt. Some days are better than others…”
“My guilt stems from my own physical, mental fatigue. The impatience, the lack of ‘peaceful understanding’ of his inability to respond, the repetitive requests to perform simple tasks…”
“When the same question is asked over and over in a few minutes, then I give him a silly answer and he is very upset about that, then a few days later I do it again. In the evening on some days when things have not gone well, I ask myself how can I keep doing this!”
“I should be on top of this!”
Feeling guilty about things we do or say is normal. Typically, we can forgive ourselves, make amends, and move on. But for some reason we often allow our caregiving missteps to pull us over to the dark side, where we forget that we are, after all, human. Could this be because our expectations of ourselves just might be a little out of reach?
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However, it turns out that there can be an upside of feeling guilty.
Guilt can propel us to improve.
Guilt can motivate us to make beneficial changes in our caregiving skills, or drive us to stop procrastinating and try out something new that might make things a little better.
In short, Guilt can result in opportunity.
So how can you manage your Guilt? There are lots of tutorials out there, but this one seems pretty straightforward:
1. Identify your feeling
2. Forgive yourself
3. Change your self-talk
4. Seek objectivity
5. Take action
6. Learn from your mistakes
(To find out more about this list, click here)
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How do other caregivers address their struggles with Guilt? Here’s what some of them say – you’ll notice a connection between these and the recommended strategies above. Keep these handy to remind yourself what to do the next time you feel Guilt rear its ugly head:
“I’ve found that if I’m able to recognize WHY I’m feeling guilty – it’s usually when I’ve gotten impatient or testy – then I’m able to catch myself the next time and have a better response.”
“I spill my guts at my support group meeting and get absolution from them!”
“The best thing I’ve learned through all of this is that there’s no such thing as a perfect caregiver. I’m still working on getting better, but now I’m not so hard on myself when I do or say the wrong thing. Education is the key!”
“Even though I know I’ve made the right decision for her, I still struggle with the guilt. Writing my feelings down seems to “lighten the load” at least for a time.”
“Guilt, like worry, is a useless emotion. It only disturbs our thinking and causes feelings of unworthiness, both useless and impractical! So I have a goal of corrective actions (I try to do better next time)!”
“I try to remember that everyone makes mistakes, even in caregiving, and I’m learning to forgive myself.”
“I call one of my friends to complain when I start feeling guilty about something I’ve done. She’s great at reminding me about all the ways that I’m doing a good job and that really helps.”
“I sometimes feel guilty when I leave my wife for 2-4 hours to take care of myself (pilates, grocery store, horseback riding) but I go anyway because I know if I don’t I’ll be angry and resentful and generally of no use to my partner.”
“I try to remember the 80/20 rule I learned in Caregiver College: do your best 80% of the time, forgive yourself for the other 20%.”
“I've learned to just give myself a little whack on the head, and move on, hoping to do better next time.”
We gratefully acknowledge the members of the MemoryCaregivers online support groups whose comments appear in this article.
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Anosognosia – it’s a funny word but it may explain a lot about why your loved one doesn’t recognize that they need help.
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A special thanks to the sponsors of this newsletter: |
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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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2022 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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Starting on September 15, 2022, MemoryCare will be providing an educational series designed for caregivers to learn more about how to care for themselves and their loved one affected by dementia. Courses are free, open to the public, and will be presented as a live online broadcast. See the corresponding course below to register. Contact our office at 828-771-2219 or education@memorycare.org with any questions.
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Dementia and Driving: When is it time to Stop Driving?
September 15, 2-3:30 pm
Presented by Jan Stephanides
Occupational Therapist and Certified Driver Rehabilitation Specialist, UNC Health Blue Ridge
Driving is a skill that requires clear thinking, attention, anticipation and swift decision-making skills. The development of dementia often makes driving dangerous. At the same time, many drivers resist advice to set aside the keys and continue driving. Families often find themselves in a no-win situation as they try to persuade a loved one to stop driving. Learn about the effects of the disease on driving, red flags for driving cessation, if a formal driving evaluation is necessary, and how to talk with your loved one about driving cessation.
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How to Choose and Transition to a Long Term Care Setting
September 22, 2-3:30 pm
Presented by Barbara Kenney, MS, BSN, RN, ACM, CCM
Director of Care Management with AdventHealth
A discussion on the types of long-term care, what the financial implications of each are, how to search for long-term care, and how to make the transition.
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Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer's Journey
September 29, 2-3:30 pm
Presented by Dr. Edward Shaw, MD, MA
Physician, Mental Health Counselor, and Author
A discussion based on Dr. Shaw’s book, Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey. This collaborative, groundbreaking work between a healthcare professional, caregiver, and relationship expert will: Provide an overview of the love languages and Alzheimer’s disease, correlate the love languages with the developments of the stages of AD, discuss how both the caregiver and care receiver can apply the love languages, address the challenges and stresses of the caregiver journey, offer personal stories and case studies about maintaining emotional intimacy amidst AD.
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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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Livable Appalachia Summit
Access to Healthcare in Rural Areas
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"Many 50+ adults struggle to access the affordable, quality health coverage and care they need. "
MemoryCare's Executive Director, Virginia Templeton, MD, will be joining AARP and other community collaborators in North Carolina, Virginia, and Tennessee for a VIRTUAL informational and networking opportunity to explore the unique challenges and opportunities of access to health care in the South Central Appalachian Region. This event will be moderated by Rose Hoban who, with community leaders, will discuss alternative approaches to accessing healthcare and explore policy choices.
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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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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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