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I feel so not myself anymore after living and caregiving 24/7 with my mother this past year. I know that people do this for a lot longer than I have so I don’t want to sound like I’m whining. She is declining and not wanting to be here anymore because of all the pain she is in. I feel terrible for her and just want her to be comfortable. I’m ok with the chores and the keeping an eye on her all the time but I must say that something in my brain feels like it has shifted. Like I don’t know how to take care of myself anymore and that I’m really stuffing my needs and feelings. I keep fantasizing about a group I can go to once or twice a week, I just feel like it would help keep me on track. Anyone have experience with this type of thing? Thanks!

I need a class is there one in Palmdale or Lancaster. Cs
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Reply to Rancho
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I moved my mother in with me a year ago and just started therapy but not with a group. I wish I could find a group. Maybe now that things are opening up, I will be able to find a place that offers this.
I found an online Christian based counseling website. Online was not my first choice, but I couldn't get anybody to call me back after leaving messages that I was interested in starting therapy.
My counselor and I write back and forth throughout the week. I have also scheduled phone sessions. So far, so good.
This site has also been a therapy for me. It's comforting to know I'm not alone in this challenging journey.
I completely get what you mean about a brain shift. For the first time in a year, I will have about 5 full days of freedom as my sister is taking my mother. A friend asked me to come up with something to do...something I really want to do. So far I can't think of anything. Isn't that something?? I fear I have become a boring person who only knows how to cook, clean, and whip a wheelchair into the back of a car.
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Reply to Beatlefan
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NeedHelpWithMom Jun 11, 2021
Call the assisted living facilities and nursing homes in your area to see if they have support groups. Some have meetings on their premises.
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I went to an in person pre pandemic support group for caregivers. I loved it! There was a social worker who led the group. She was fantastic! It really helps to have a person leading the conversations in the proper direction.

There is nothing like face to face support. Do give it a try if it is available in your area.
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I am so not a group person, but I bit the bullet and went to one of only two support groups specifically for adult children caregiving for those with Alzheimer's or Dementia. The group was a great mix of people who still had a sense of humor, the facilitator was skilled, and experienced, compassionate and knowledgable. But then the philosophy of management of the Alzheimer's Assn changed, and she departed and staff who liked to lecture took over, then switched to unskilled inept volunteers as co leaders. ONe by one people began to not show up, the group disintegrated, and I still tried. But I had some significant stuff to discuss and was not included in the discussion, two meetings in a row, and I'd had enough, that was it, I was done.
If you choose more private help, of course that is expensive. My recent experience was being turned away by 3 professionals who were all cutting back on their hours or looking toward retirement. Finally found someone, but I don't think we're a match. Small comfort but I think our identity begins to change and we are so much identifying ourselves as caregivers....when we are so much more than that and so much of who we were before doing caregiving. We just signed my mom up for Hospice, I wonder if that might be an option or any help for you? You do not at all sound like you are whining...and even if you did, we all get it and you're entitled.
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Reply to gdaughter
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I have and still do attend support groups for caregivers sponsored by my County Office of Aging. I highly recommend them.

I suggest you get out of the house often. If she can't be alone, hire someone to come in. If she doesn't have the money for that, it is time for medicaid and placement. My county, through the Office on aging, sometimes has free respite care for 20 hours.
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Reply to MaryKathleen
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Yes! Definitely get with a group or two or three. Decide which one works for you. Stick with it.

I attended one for about a year before the pandemic hit. At my first visit I wondered why I was there. The second visit was better and I was hooked the third visit.

I was usually the only male at the meetings but I was comfortable. I would say it’s comforting to hear what others had gone through or are going through with their spouses. I say comforting because I realized I wasn’t alone. We were able to pour our hearts out and no one looked down on us for it. We laughed, we cried, we learned from each other.

You may attend one meeting and not get anything out of it. The next meeting may be different in that you will learn, from a member, of adult day care facilities. You may mention something no one knows about.

Yeah, I miss the group. I didn’t realize it until I started this post. Maybe soon the Senior Center will open back up and restart the meetings. I don’t do Zoom because my wife would hear the conversations and I can’t talk freely.
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Reply to hallah
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I know how you feel. I was taking care of my mom moving in n out of her house. Luckily I lived on the same road so when I didn't sleep there I was walking back n forth all day feeding her checking on her. I was getting so tired n sometimes depressed that I didn't want to do it anymore. Then one day she called me with Alexa thank God we taught her how to use it n we ran up there n she fell n broke 5 ribs . In the hospital she went . After that to a traditional rehab center. Sadly I feel bad she is there n miss her but for me my sanity is back. I see her weekly now since the virus has cleared up. Its been a long 6 months but she is where she needs to be. In a few months she will be moved to a nursing home as they feel she needs skilled nursing
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Reply to Msgt19
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Imho, yes, although it wasn't a "group" that I utilized (it actually was offered as a group, but I didn't use the group), I saw a psychiatrist short term after my mother passed away. I had been living out of state caring for her and I then experienced sadness, of course, when she passed away. The specialist was able to give me an rx for sadness/anxiety.
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Reply to Llamalover47
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I went once right before pandemic. It was all older women than me, but that didn’t matter. I cried entire time. Everyone was so nice. They really cared about me. Their stories were worse than mine. I wanted to go back but didn’t get to. I’m doing better right now after having this past year not allowed to see my mother. She has changed dramatically, but I seem to handle things better. I suggest you go. Best wishes
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Reply to Mjlarkan
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Yes...but thought it would be a discussion group with other people in my position. There was a leader and about 3 or 4 attendees. Most had people in the facility where it was held. Didn’t go back.
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Reply to psuskind1
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YES! It really helps just to hear testimonies of others going thru some of the exact same things. Sharing experiences and possible solutions helps too. You can start with your state’s Agency on Aging. ❤️❤️
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Reply to ForCladdie
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I found my support group through the local Alzheimer's Association. Our group was less about actual caregiving and more about the disease and why my LO was doing the things she was doing. They did teach some "tips" for dealing with certain behaviors. It did help.
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Reply to mikejrexec
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I joined a support group. It helped somewhat but it seemed to be focused on the person you are caring for not the caregiver themselves. Also it seemed like nobody was having the same problems that I was going through unless they were but not saying anything. I have been and still going through bed bugs, no help from siblings, care giving out of state, momma's verbal abusive and siblings abuse to the point that I don't have anything to do with them. I do still take care of momma though.
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Reply to akababy7
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Pre pandemic I did attend a support group that met weekly in the meeting room of a local Assisted Living facility. It was and still is a Godsend!. Just recently we restarted meeting in our local Senior center. Each one of us has our own challenge, together we share experiences, good or bad. We do have an experienced facilitator. We are a group of husbands and wives, daughters and sisters, all sharing the same heartbreak, the ugliest disease, dementia. I’ve learned and gained so much information from their experiences, each so unique, yet so much the same.
if you can find a local group it will be worth your time. Check the local Alzheimer’s Association or any Assisted Living or Memory care facility. They may have a list or may sponsor meetings in your area.
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Reply to Malanna
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I went to a support group that met twice a month and it saved my sanity. It was wonderful to go to a place where you can talk about what's going on, and really how you feel, and feel understood. Guilty. Resentful. Exhausted. I got tips and suggestions and watching others go through things with their LO I hadn't experienced yet, I felt more prepared. And I was able to do that for others. I highly, highly recommend it.

I don't know where you're located but in NYC you can contact CaringKindNYC.org (which mostly focuses on education and support - their legal and financial workshops were invaluable). There is also Alzheimers Association, nationwide, they also have support groups. I know people that have been going remotely since the pandemic.

Do it. Just do it
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Reply to jshdoff
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It's so easy for women in particular to sublimate their own needs for those of others, but this is not healthy in the long term. Take care of yourself, too! It's a good idea to get connected with local caregiver groups that can help you keep your life in balance and also may be able to tell you about local options that can provide help for you.
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Reply to NancyIS
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Support Groups do help.
I belonged to 2 one a Support Group for Spouses. Most of the women, there were a few men, the spouses had dementia of some type so it was helpful to talk about what might happen, has happened and share some of the things I did to help and learn what others did to help in their situation. I was also a member of a VA Support Group and I learned what programs might be of use and I was able to get help and support from the VA.
You can also look to find out if there are any Adult Day Care programs in your area. Some of the programs will also have Support Groups in the same building and you can take advantage of both.
Alzheimer's Association has lists of Support Groups associated with them.
Your local Senior Center may have a list of Support Groups as well.
Andy if you belong to a Church or other place of worship they also may have a Support Group.
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Reply to Grandma1954
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Call the Alzheimer’s Association 800.272.3900.
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Reply to Ricky6
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You definitely sound like you have reached the point where you need to get help and support. There are so many options to choose from, if you prefer in person try that first. There are also so many online support choices - I have used many as my husband progresses in his Early- Onset Alzheimers disease. You can pick and choose until you find what works the best. Someone mentioned keeping a journal - I tried that but realized that someday I didn't want to go back and read all the heart-breaking stuff I was writing and also didn't want my loved ones to read it either. So just get started and find what works for you - may you find comfort in the support you will find.
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Reply to JeanneMB
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I started attending an in personal group about a year and a half ago. What took me to the group was not my husband, it was how I was treating my husband. I was so frustrated, confused, and angry because of how he was acting. We had a diagnosis of mild cognitive impairment. I was fearful at first and said very little . I knew in my mind, where we were heading, as I had lost my sister to Alzheimers . I was hating myself for the way I reacted to him . At the first meeting I went to every thing was put into prospective for me . The facilitator suggested that the newcomers to think of their partners with a turban like bandage wrapper around their heads because their brains were broken . They Can not Help What is happening . They are not deliberately hurting our feelings . When they are giving us a hard time it is because they are having a hard time . It has taken me the better part of the last year , going to the zoom meetings , to understand how important the meeting have been. I started working about my own health .. I am now on an antidepressant and talking to a therapist , one on one, and treating my partner much better . I know so much more about what is going on and the steps need to protect the both of us .. I hope this helps ..
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Reply to Nanulinda1
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Our Alzheimer's Association (St. Louis) has such support groups; also a support group for patients, I believe.
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Reply to caroli1
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Groups differ. People differ. Some probably find groups enormously helpful. Others may find it less helpful, listening to all those tales of woe.

Myself, I found a group a welcome break in the week. (New mother's group way way back). It gave fresh insight & I learned from the more resilient members. Looking back, I did feel drawn down by the depressed/struggling members of the group. But I am so grateful for it.

Go looking & see if it's for you. Nothing to lose.
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Reply to Beatty
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Oh I was in 2 separate caregiver groups before the pandemic and they were different and each wonderful. Now they are on zoom and it’s not the same. We hope they resume in the fall. You can get very helpful advice from others as well as compare stories or, like me, feel free to whine. Everyone understands when you complain that your loved one misplaces things and drives you crazy even though it is a not a major thing compared with with others are dealing with. I SO recommend groups to anyone caring with a disabled person. The Alzheimer’s association is a great resource or call your local aging social services organizations to your church. Also, keep a journal. It is as it you are talking to someone, not as good as a group but a helpful thing in the meantime.
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sjplegacy Jun 4, 2021
It's great that the groups provided the support you were looking for. As a facilitator, I, too, didn't like zoom meetings. They didn't provide the person to person connection that I think is so important.
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I would love to join a group. I don’t know how to find one and I have done various searches on line.
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Reply to Janine5432
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sjplegacy Jun 4, 2021
Call the Alz Assn, your local Area Agency on Aging or your state Dept of aging.
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I dreamed of having a group made up of people like me who were in the trenches that could just meet informally for chat and to share information, but I'm in a small town so in person support was very limited. I tried a group with the Alzheimer's society but it was not a good fit in any way, most of the others were women in their 80's caring for their husbands and the coordinator seemed to know less than I did :(
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Reply to cwillie
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I wish I did, but the introvert in me prevented me from doing so.

with me visiting my dad at his AL I started meeting both residents and family of residents, from there some of the family members got together for a drink after the visit and that is when we started the support group.

the support group helped me realize I was not alone with the struggles, doubts and questions I had and still have.

yes I would recommend a support group to any one caring for a LO with the following caveat; the SG has to be a good fit for you. Not all SGs are alike and know that it might take you several tries to find the one that is right for you.
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sjplegacy Jun 4, 2021
Good for you Susan in starting your own support group. I think groups started by people who have been caregivers are the most beneficial and effective. Some of the Alz Assn facilitators have not had the experience of being a caregiver, the assn trains them to be facilitators.
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I went to one for 6 years and learned a lot about self preservation and how to anticipate problems. I am now starting my own group in my community with the support of the Alzheimer Foundation.
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Reply to MACinCT
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I've belonged to a local caregiver support group for the last 3 years. It saved my life! Prior to the pandemic, the group was meeting every Wednesday and Friday at our local Senior Services building. I was only able to go on Wednesdays, but it was so great to be able to share in person with other folks who were or had been going through what I was. No one understands a caregiver better than another caregiver. It was a place where we could laugh, cry, and get a hug when it was needed. Then sadly the pandemic came, and we've been meeting on Zoom ever since. It's better than nothing, but it's not the same as sitting side by side with another caregiver and sharing your struggles. And you can't give hugs either. My husband(who I was caring for)has been dead for 8 1/2 months now, but I still get on Zoom twice a week now, as I'm able to encourage and share things that I learned along the way. And hopefully in the not to near future, we will once again be meeting in person.
You can Google to see if your city offers any kinds of support groups. That's how I found the one I now belong to. Best wishes.
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Reply to funkygrandma59
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sjplegacy Jun 4, 2021
I am pleased to hear that you still participate in the support group. Most caregivers drop out when their LO dies, not realizing that they can offer so much useful information to the attendees, and although it's not specifically a grief support group, sharing their stories with others can be often be therapeutic for them.
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After loosing my wife to AD, I decided that I had to do more to create awareness of the disease, and to offer a safe outlet for dementia caregivers. I attended some support groups while my wife was in MC, and watched the emotions pour out of those in attendance who were burned out, felt helpless, and needed other people to understand the stresses of caregiving. In June of 2018, I began facilitating my own dementia support group, and prior to COVID I was moderating two more. I have since resumed one in person group and am working on getting the others up and running, one in a church and two in care facilities. I feel so honored and privileged to offer these caregivers the opportunity to freely express themselves and to offer them hope without judgment.

Support groups can be very personal. They are not the “whoa is me” sessions some people believe they are. In fact, there are moments of laughter when someone may relate a story that is humorous. They may not be humorous at the time the caregiver is experiencing them, but, in hindsight, can make people laugh, often because they, too, had the same experience. Groups can offer emotional and practical support. Attendees relate their own struggles (you don't have to say anything at all, that's fine), and find out others in the group experience the same challenges. Even your own story, if you choose to tell it, can help others in the group cope. People of all backgrounds and income levels attend these meetings. Information and suggestions are shared among the group. A support group offers a safe place where any negative emotions about caregiving can be expressed and VALIDATED.  They can also offer you ideas on how you can stay healthy.

There are support groups for many diseases; cancer, diabetes, stroke and many more. They may be held in hospitals, senior centers, churches and care facilities. Some meet monthly, some semi monthly and some even weekly. I suggest you attend one and see if it can help.
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A place like that would be so helpful, following this thread.
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