Using a Caregiver Support Group for Dementia

There comes a time in the lives of many people when they understand they must “bite the bullet.” With caregivers for Alzheimer’s and other progressive dementias, it is most likely the moment when the diagnosis is made for our loved one, or when we see our loved one gradually losing cognitive and functional abilities.Using a Caregiver Support Group for Dementia

A caregiver support group can assist those caring for loved ones with dementia through difficult times. Learn more about using a support group for dementia.

The Role of a Caregiver

I am oftentimes asked if the role of caregiver is not inherently more palatable due to my profession as a clinical psychologist.  I always offer a resounding, “NO!”  Assessing a patient for dementia is totally different than caring for that person’s needs 24/7. When attachment and emotion is involved, no amount of training can prepare you for the devastation of the one you have loved and admired for decades.

Many of us can manage the cognitive and physical tasks which we now need to do as our husbands, wives, mothers, fathers, brothers, sisters, aunts and uncles sink further into the quicksand of dementia. But, the battles we fight daily are something none of us are trained to manage.

We take over the checkbook, cooking, cleaning, driving and laundry, while we battle feelings of “Why is this happening?” daily. The Golden Years we had diligently planned for are not even in the repertoire anymore, as we go to see an elder attorney. We do our trusts and our estate planning, our POA’s and our Advance Directives, while reading up on statistics that tell us that we caregivers are far more likely to die before our same-aged peers. Furthermore, over half of caregivers will die before the loved one for whom we care.

In order to protect ourselves, we caregivers must pay attention to ourselves. It goes without saying that a proper diet and routine exercise keeps your body conditioned to resist disease. Sleeping is problematic, so inducing sleep though relaxation, soothing sounds and a nightly chamomile tea may help. But, eventually, none of this is enough. The emotions are so powerful that they begin to invade the core being of the caregiver.

It is then time to find a caregiver group.

Using a Caregiver Support Group for Dementia

Your caregiver support group could be an organized group of caregivers who meet regularly, sharing the good, the bad and the ugly without fear of recrimination of negative evaluation. But, your group must be those who are in the same warrior group as you – those who understand how dramatically their life plans have been altered.

Your group needs to understand that their collective journey is not done yet. It is not highly likely that your group will be found among your existing friends. As close as friends may be, they are also so relieved that your battle is your battle – and not their battle.

Your group will probably start out as strangers and end up as supporters, companions and friends. They will be caregivers who are not ashamed to bear their souls and allow you to see the ugly side we all want to hide. They will be among the most courageous people you will ever meet and know for they will stay the course.

When the time comes that your group members must relinquish or share the caregiving role with others, they remain advocates for their loved ones and they will continue to help you on the completion of your own journey.

Your group will tell you that when your loved ones must be placed, you have already met and exceeded the promises you made to your husbands, wives and parents. You made those promises at a certain place and time and the spirit of your promise will continue to the end. But, those places and times when the promises were made are long past and the group will tell you that your priority is now to save yourself.

Finally, the group will be with you to help you to the life that is yet to come.

Have you used a caregiver support group for dementia? What impact has your support group had on your life? Share your story with us in the comments below.

About the Author

Dr. Karen Hutchins Pirnot is a Clinical Psychologist, specializing in pediatric and geriatric psychology. While working in Iowa, she did legal consultations and assessments for the Juvenile Justice system. After a move to Florida, Dr. Pirnot practiced in skilled nursing homes, assessing and consulting for dementia patients. She also conducted disability evaluations for the State of Florida. Retired, Dr. Pirnot is now a caregiver for her husband. She enjoys going to concerts, Little League games and social interactions with family and friends.

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Please leave your thoughts and comments

  • Connie Rivera

    I am so tired and sad. And scared. Just got home from hospital 4 days ago. Diverticulitis and uti. Very weak. My husband is in the middle to late stages of Alzheimer’s. His children cared for him, my children cared for me. His children have not come to visit since I returned. Friends and family have. My husband is concerned for me in his lucid moments.

    • Dr. Karen Pirnot

      You sound like a tough woman, Connie. My heart goes out to you. Let others take over when possible. You must heal yourself.
      Dr. Pirnot

      • Tired and worn out

        That last paragraph is profound. It is the answer to the question we all have as caregivers.

  • Jan Schredl

    You may not have volunteered to be a hero in becoming a caregiver, but a hero and an example you are. In a world in which sex passes as love, in which comfort is our entitlement, and selflessness little understood, you stand as a light of hope and inspiration to all who struggle to live up to the marital vows they made. Just so you know: the sacrifices you are making are meaningful, they reinstate the dignity and capacity of man far beyond the walls of your own house. God bless you!

    • Dr. Karen Pirnot

      People like you are the wind beneath our wings……………….Dr. Pirnot

  • Judy Wilson

    No one can better understand the stress, frustration, challenges and sadness of caring for a loved one with this horrific disease. Your support group will become your lifeline to sanity, and your greatest source of comfort. They will not judge your failures, and will celebrate your victories. They will become some of your closest friends as you travel the journey together. I would be lost without my wonderful support group.

    • Dr. Karen Pirnot

      Well said, Judy. The support group is oftentimes the lifeline. Dr. Pirnot

  • Felicia

    I began attending a Local support group after my husband age 52 was diagnosed with ALZ. I had to quit going due to the stress of hearing what I was to live out. I learned to get my personal legal issues in order then quit. Now two years later I realize there is no one who can help or even begin to understand my emotions. So many times I have heard someone tell me I need someone to talk to. Someone who will listen. However, no one wants to be that person. So, I now know , I must return to a support group to find compassion in this journey that I hope to live through and once again find joy in life. Joy that seems so lost. So distant. Early onset has so much more to deal with. The children are too young to give support as they are in much need themselves. Family finances devasted by the loss of the main source of income and myself the spouse now having to quit working to be a caregiver. Some days are difficult but most are very difficult.

    • Dr. Karen Pirnot

      I grieve for your losses, Felicia. But, you are right in thinking you need to return to a support group. No one can truly understand the losses you must face daily. My heart goes out to you……………Dr. Pirnot

  • Debbie Casey-Szyszka

    I’m really having difficulty finding a support group, all the links I try to follow seem to be broken, any advice?

    • Dr. Karen Pirnot

      Debbie, it depends so much on where you live. I live in Florida and there is a lot of support here. But I know that many locations have few resources available. Please do not give up as you need the support. The group is my lifeline to sanity! You might try the Alzheimer’s Association as they do have a lot of services available. Also, many long-term care facilities have support groups and you do not have to have a loved one in the facility in order to attend the support group. Let me know how you do, please. Dr. P………..

  • Dr. Karen Hutchins Pirnot

    Sometimes, just reading about others’ experiences will bring a sense of comfort. My book “Nothing Left to Burn; A Caregiver’s Voice” details the eight years (plus) I have spent as a caregiver for my husband. Early on, I started a program of reinforcement in order to attempt to bring a sense of trust and stability to a relationship which was becoming more and more foreign. I just published that book this week. It is called “Making Love on Scrabble.” Both books are available on Amazon. Dr. Karen Hutchins Pirnot

  • Lori Lynn

    Hi my mom is suffering from dementia and I’m her care giver I need some advise or someone who can listen to me and give me suggestions I’m mentally exhausted 🙁

    • Dr. Karen Pirnot

      Hi Lori, and yes, I imagine you are exhausted. If you have friends who could take turns staying with your mother (even for an hour), that would be a start. Please search for a support group in your area. It helped me immensely. Dementia is one of those things that many simply do not understand and you may not get support for those who are generally in a position to give it to you. I have wonderful friends but many are far away and unable to provide immediate relief. However, they do give internet support and that helps on the worst of days. Depending on the condition of your mother, you may even quality for Hospice respite care. If you can afford it, there are many community-based respite care services for which you would pay a fee for in-home care and companionship for your mother. Going for rides oftentimes brought a sense of peace to my husband when he was agitated and disoriented. I also took him outside and turned on the fountain and we search for birds and looked at flowers. Anything that was familiar to your mother 25 years ago might be a source of peace. Please let us know how things are going with you. Oftentimes, those who write in have wonderful ideas. My best to you………………Dr. Pirnot

      • Lori Lynn

        Thank you Dr. Karen we have no support groups in my area they are about 2 hours away 🙁

  • Dr. Karen Hutchins Pirnot
    • caitlinburm

      That is incredible, Dr. Pirnot. Thank you for sharing that with us!