I had been looking for a Caregiver support group for awhile and I didn't locate one here in Gainesville, GA. I do believe that Aging Care is a good site to talk about Caregiver issues or Caregiver Stress and burnout. That I have because my Mom turned 90 last Christmas Eve and we've had some arguments and I admittedly yelled very loud at her. She's got dementia and loss of hearing is 40% and she won't wear a hearing amp. She thinks she's ok and if I say she has dementia she has her feelings hurt. Then she wakes me up in the morning knocking on my bedroom door and I'm up late like almost all night. I worked 3rd shift jobs for about 7 years since 2006. One was 7pm to 7am on a Continental 2nd shift. She can't really remember 1 day to the next and she's redondant about the same thought. I'm adhd and I'm not slow but I have chronic pain in my feet from tendonitis and arthritis in my left big toe. I've had it for 2 years. Also lower back pain from Scoliosis and a bone spur. I am seeking physical therapy help and Counseling for support because my Mom has made me feel bad and depressed. Like demoralized but that may be exaggerating. My Sister is finally moving back to her house in Dahlonega, GA in a few weeks. It's a little late but she's moving from North California. Retirement.
I was never a group type person. Being that one of my parents has dementia I decided to "try" a support group sponsored by the local Alzheimer's Assn of which there were many. Numerous groups they sponsor have staff members in attendance and at the first meeting in describing a situation, when they knew absolutely nothing of our home life and circumstances, this staff member decided to comment on how it was the time to consider a placement. This person was not only wrong, disrespectful, and clueless, she also had no knowledge of our finances. This type of comment is what led me to discontinue, in addition to being in a group with spouses more than sons and daughters; one sensed that the spouses thought the children were not good kids for complaining etc. Then they had a local group ONLY for adult children. This was led by an outstanding facilitator as well as a group being made up of great people. I looked forward to the meetings. I learned things, often from other participants. The facilitator sat back, but contributed wise tidbits as appropriate, resources...but the group really led itself. A change in administration with the organization wanting to focus on being volunteer led imo led to the demise of this great group, and sadly I did not exchange names/numbers with anyone so we could assemble on our own which many of us might have wanted to do. The original facilitator was resigning; and a staff person took over taking it upon herself to make assumptions about family members she knew nothing about as well as using her years of experience and knowledge base to think she knew what was best for everyone. At least half of the short meeting time was used by her as an opportunity to lecture, when we, as caregivers, wanted the opportunity to share among ourselves and feel that support. Ultimately that person stopped leading the meetings and it was turned over to two well meaning volunteers who also couldn't compare to the first facilitator. They were incapable of being inclusive to all, and latched on to newcomers who were the focus. At times it seemed like there was more concern in beefing up their numbers of participants for statistical purposes than anything else. When I was going through some particular challenges there were 2 meetings in a row where I never had a chance to speak. I was not, nor were others, the type to jeopardize the entire meeting, and a good facilitator(s) would never let that happen. When it happened the first time I left the meeting feeling very unsupported and stifled. When it happened again at the next meeting, I was given a chance with about 5 minutes remaining. One of the facilitators made a comment about "we'll have to start with you next time! :-)" and as I walked out I knew there would not be a next time. It can be a great thing with the right people...it's worth trying...but if you don't feel connected, I found for myself the stress of rushing home to tend to things and then back for the meeting was not worth it, especially when being ignored and with biased organizers.
Oh my gosh SantaFeSunshine...I am so sorry for all you are going through...your family members are so blessed. And I can so identify with your sense of overload. I would be checking in with that holistic practitioner who got you on the right track to help you stay on it, though it sounds like you are doing all you can in a very difficult situation. People don't recognize the stress of being in attendance for these medical appointments or in general of being sort of on call 24/7 even when not providing actual care or attention. Around here some of our yoga people incorporate meditation. I don't know about your or your brother's finances, but if you're comfortable with it, maybe hire someone to pick up the slack of your own household tasks to get that off of your to do list. Put the burden when you can on others: have the well paid medical types do a summary of the high points and print it out for both you and your brother. Is hospice appropriate? Is there a local office on aging that can provide both of you with some services? Meals on Wheels? At the beginning of this month I had a medical emergency and wound up in the hospital for a few days. That alone was a huge stressor which no one cared about. When asked if I "lived alone" I responded no, but that I lived with my 103 year old father and 98 year old mother (who has dementia). But they paid no attention to that. And knowing the stresses of having others in the home to "help", I easily might have declined...however, on returning home I cut myself some slack. I used grocery delivery the first week; I have frozen meals as back up; I am not cooking for involved meals with 2 sides, more simple items that are less fussy with one or even no sides. And, for the first time I can recall, I said NO. I had invested more hours than I can count in accompanying my father to an outstanding eye doctor where he got an updated Rx for glasses. I used a company out of state to order his glasses which were confirmed to be just right Rx wise. Hours picking a frame similar to what he had and that worked with his small face. Getting the best lenses to meet his needs. Assuring they could be returned if he didn't like them. They did have to be exchanged as he couldn't adapt to progressives and wanted his usual line bifocals. And then one night he left the new glasses, after more than a month of having them, in their case with a note and a grocery list of what he didn't like. Mind you this is a very active 103 year old who drives. He wanted to know if they could be returned. And I said yes. BUT that I was DONE. And he was on his own. I believe if you provide the help 24/7 on call long enough, your being there will be taken for granted and you can easily burn out. Compassion fatigue. Hoping it goes as well as it can for you.
Just do not know how helpful I have been to others, however, I have been happier since arriving to the Aging Care forum. The effort to help has been made, and even if my comments do not fit the caregiver I am trying to help there's this: 1) Others who can receive it will be helped. 2) At the very least, the recipient will be sure of what they don't want to do. Then there is the ongoing laughter caused by those light-hearted persons with an amazing sense of humor when they share with me and others. Good to be here on AC!
That is why for the past 20 some years I have been doing volunteer work, on and off, at our local regional hospital.... I always feel great afterwards :)
And my aging parents can't complain that my volunteer time is taking away time from them at their own home, because I took over one of their shifts and identical work when my parents were forced to retire because Dad could no longer drive to the hospital.... my parents had put in 30+ years volunteering.
Giving back is the best thing for emotional and mental health. It is very easy to get caught up in self-absorption. It's natural, and no one would blame you for feeling overwhelmed and exhausted, but there's something about a shared camaraderie that lightens the burden. Self-focus leads to anxiety and mental illness; others-focus leads to better health.
Over four years ago one of my older brothers was diagnosed with stage 4 rectal cancer. My brother was a talented, creative artisan who had been experiencing stomach issues before he finally went to a doctor who sent him for a colonoscopy. The worst news he could have received. Because my brother was a person with no significant other, and we were always close, he turned to me for help. I saw him through every phase of the cancer, right up to his demise, and his three children did not step up to the plate until a month or so before. The toll this experience took on my mind and body was huge, and at 68 it was difficult to diagnose, since Western medicine is quick to hand you a pill. My adrenals were exhausted, my nerves were shot, I slept very little for an entire month, until I finally met a holistic MD who set me on the right track. It has taken all these three years to get to a point where at 71 was starting to look forward to each day. Now three months ago my younger brother, 65 has been diagnosed with head and neck cancer. He too is single and unattached. His two children, 44 and 18, show little interest in him or his condition. By default, the ball has again fallen in my court. I am also an artist and in preparation for radiation and chemo, I have attended countless appointments, etc, with him. A week after the diagnosis he was hospitalized for an 85 percent artery blockage and during his hospital stay was subjected to many tests to locate the origin of the cancer. All that said, I can already feel the stress affecting me and I worry about my blood pressure and overall health. I would really appreciate some suggestions to keep my stress level down. I do yoga twice a week, but neglecting my work and home have stressed me out more as I try to help my brother get through this. He also has a diagnosed panic disorder and has difficulty remembering what the doctors say, so I have to take notes of everything and monitor his appointments, cook a few meals, do a little laundry and pick up his small apartment whenever I can. And I might add that because of this disorder, or his personal makeup, he's not always easy to deal with.
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Participating in a Caregiver Support Group May Make You Happier
Then they had a local group ONLY for adult children. This was led by an outstanding facilitator as well as a group being made up of great people. I looked forward to the meetings. I learned things, often from other participants. The facilitator sat back, but contributed wise tidbits as appropriate, resources...but the group really led itself. A change in administration with the organization wanting to focus on being volunteer led imo led to the demise of this great group, and sadly I did not exchange names/numbers with anyone so we could assemble on our own which many of us might have wanted to do. The original facilitator was resigning; and a staff person took over taking it upon herself to make assumptions about family members she knew nothing about as well as using her years of experience and knowledge base to think she knew what was best for everyone. At least half of the short meeting time was used by her as an opportunity to lecture, when we, as caregivers, wanted the opportunity to share among ourselves and feel that support.
Ultimately that person stopped leading the meetings and it was turned over to two well meaning volunteers who also couldn't compare to the first facilitator. They were incapable of being inclusive to all, and latched on to newcomers who were the focus. At times it seemed like there was more concern in beefing up their numbers of participants for statistical purposes than anything else.
When I was going through some particular challenges there were 2 meetings in a row where I never had a chance to speak. I was not, nor were others, the type to jeopardize the entire meeting, and a good facilitator(s) would never let that happen. When it happened the first time I left the meeting feeling very unsupported and stifled. When it happened again at the next meeting, I was given a chance with about 5 minutes remaining. One of the facilitators made a comment about "we'll have to start with you next time! :-)" and as I walked out I knew there would not be a next time.
It can be a great thing with the right people...it's worth trying...but if you don't feel connected, I found for myself the stress of rushing home to tend to things and then back for the meeting was not worth it, especially when being ignored and with biased organizers.
1) Others who can receive it will be helped. 2) At the very least, the recipient will be sure of what they don't want to do.
Then there is the ongoing laughter caused by those light-hearted persons with an amazing sense of humor when they share with me and others.
Good to be here on AC!
And my aging parents can't complain that my volunteer time is taking away time from them at their own home, because I took over one of their shifts and identical work when my parents were forced to retire because Dad could no longer drive to the hospital.... my parents had put in 30+ years volunteering.