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Caregiving Support Groups and Other Resources

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The responsibilities of caregiving can lead to feelings of isolation and abandonment. Caregivers' social lives often shrink or disappear. Friends and family want to help, but often don’t know how. And caregivers don’t know where to turn for support and advice.

Often, a support group can be a life-saver, allowing caregivers to talk to others who are experiencing the same joys and challenges, and who can not only empathize, but offer valuable insights and suggestions.

Here’s a list of organizations that offer support groups and other resources. Most of these organizations include a search feature on their site to help you find a local office or group.

To find support groups for specific diseases and conditions, consider some of these:

Last revised: May 16, 2013

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Thoughts and stories from others
  1. October 8, 2018 at 9:41 pm | Posted by Joyce

    Taking care of mother with dementia. I work full time. I am 68 years old, mother is 89. I hired a nurse to be with her 9 to 4 Monday thru Friday. I do weekends and nights. I buried my older brother October 2017. He was my helper with Mother. I handled her medical, bills, shopping. Etc. I had mini sttoke last month. No side effects. Now my doctor says I need a relief from so much stress. He knows the situation quite well, has been my doctor for twenty years. I have always been a strong person. But things seems to be more than I can handle. Always tired, not sleeping, irritable with co-worker, no energy, want to find something to do to relax. Any suggestion?j

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  2. September 5, 2018 at 1:05 pm | Posted by Shelley Carpenter

    I read your story and felt like I read mine. While I am not Hispanic, I am the guilt ridden care taker for my mom. Having two parents to care for at this time would send me over the cliff. My dad passed 20 years ago, my mom married a second time, moved to Texas and for 8 years I did pretty well. I would visit her twice a year and after her second husband passed, the old demands came again. While my mom is now in skilled nursing, she's 95, she is mean. She's been mean all her life, even though she was a good mom. She loves to control. I had an emotional breakdown and still suffer with panic attacks. Struggling with her insurances, her finances has been so awful. Those companies know how to delay and ignore. I am tired, run down, nearly died a year and a half ago and it has taken me a long time to get back onto my feet. Just wanted you to know I am praying for you. I retired 13 years ago, have wonderful sons and daughter-in-law and 4 gorgeous grandchildren. I try to focus on them. I go to a women's bible study and that has helped me so much. I have pried myself from my mother's control issues. She lived with us for a short time and God showed me this was not His best for her or for me. Making changes is hard at the time, then to work through them is hard and finally you come to rest in your soul that you have done right. Many care facilities take Medicare. Sending affection from an older woman who understands, Shelley

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  3. September 3, 2018 at 6:10 pm | Posted by Judy

    I am also looking for a support group. I recently moved to my mothers house to take care of her. She will soon be 84 and has dementia. I was not prepared mentally for this. I have been overwhelmed to say the least... Her behavior is very bizarre at times. No family help and I have a very small circle of friends. It is difficult for me to socialize. The only time I am ‘free’. Is before 11:00am, as this is when she comes downstairs....

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  4. August 20, 2018 at 7:34 am | Posted by Eyleen Hernandez

    Hello everyone, I am a caregiver to my mom who suffers,diabetes insulin dependent,dementia,cardiovascular disease,high blood pressure and end stage renal failure currently on dyalysis 3x week. Recently, she has been suffering sundowners and it’s confusing her day and night even give her 2 mg of Xanax to sleep every night. I am so tired, Frustrated, angry and physically hurting in my body. I had surgery just recently for a frozen shoulder and to top it off I have an internal tailbone that can’t be surgically removed that’s a hoot. Does anybody have any encouraging words or anything at all that I can try to even help with the sundowners.

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  5. August 8, 2018 at 6:54 am | Posted by Michele Gore

    I am 65 yrs old taking care of my 89 yr old mom. I moved in with her 4 months ago. She had a stroke. What I really need is help with paperwork. Planning how long the money will last,what can the VA do to help,if I have to sell her house etc. any Financial Assistance would be a great help for relieving my stress I would love to talk to anyone who has gone thru this and can advise me on this. Thanks.

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  6. July 29, 2018 at 7:33 pm | Posted by Jeanette harris

    I need a support group I care for a disabled husband

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    • August 14, 2018 at 4:34 pm | Posted by Tina

      I have been looking for one also. To meet with others caring for their spouse. Can't find one in my area. Have you went to caring.com yet? They have a caring for a spouse site that helps me.

      Reply

    • September 27, 2018 at 9:05 am | Posted by Bill

      Where are you located jeanette?

      Reply

  7. April 9, 2018 at 1:06 pm | Posted by Carmen

    Hi-I am a caregiver for both my father and mother (93 and 92 respectively). I also work a full time job which keeps me out of the house for at least 12 hours a day Monday through Friday. My mother has severe dementia and I have been caring for her over ten years. The last six years of which she has been living in her own senior apartment in the city of Newark, NJ. I currently pay family acquaintances to rotate hours with her Mon-Friday and on Saturday and Sundays I take up a 5-6 hour slack. She is totally disabled and needs everything done for - from feeding, cleaning to personal hygiene. She however is not my biggest problem. I already went through the hard part with her almost to the point where I was frantic with anxiety. In 2012 I decided to bring my father back to the states (was living in P.R) because his health was deteriorating rapidly and no one to take care of him. And in my thoughts I figured it would be easier to handle them if they were in close proximity of each other. Now here is where my anguish begins - my father is very old-school - a woman's place is in the home taking care of her family not out working or socializing. As far as I can remember I've always had issues with the fact that my two older brothers could do anything they wanted with no responsibilities or accountability for what they did or didn't do. So it has been on me to care for them. As an Hispanic woman this is my job, as my upbringing dictated and guilt was part of my life long lessons, to care for my parents as they cared for me. And I have come to the terms with this when it comes to caring for them. My problem now is that my father wants to monopolize my time at home and neglect all else including my husband and my daughter, step-daughter and grand children. In order for me to take time off I need to make up stories so that he won't pull a stunt where he will call for help to either myself or 911 because he is not feeling well. He has a home assistant that goes 5 days a week for 2 hours and helps him with his basic needs. But have come to the realization that he wants a wife (or maid) not a caretaker. I never smile anymore, very rarely socialize, and seem to always feel disconnected from everyone else and very emotional. Classic example of some of his stunts. In 2017 I went with my husband to PR to attend his father's funeral. I asked to him stay in my mother's apartment because she does have 24 hour private care while I was away - he refused. I left with a heavy heart however leaving instructions with my eldest daughter and his health assistant to keep an eye for him. On the 3rd day of the funeral I received a call from his aide that his blood pressure was at it's lowest and that he was saying he might be having a heart attack - I called my daughter, who then called 911 and rushed him to the hospital. After a series of tests he was left overnight for observation. I flew home the next day to find him sitting up in his hospital bed flirting with the nurses and on the way home he had me stop for fried chicken. A second example that just happened recently was I had mentioned I had a wedding to attend to this past weekend. I once again asked him to stay with my mom since I would be home late. He once again refused. Before leaving I made sure he had taken his medications, he had eaten and was comfortable. Once at the wedding, enjoying myself something I do very infrequently, I get a phone call from him saying he was in excruciating pain and he needed to go to the ER - I was ready to leave when my husband held me back - I called my daughter and her husband went in my stead. When they arrived, he looked fine and his pain was an open sore that was raw. They took him to the ER and after a series of blood tests and exams found nothing wrong with him- gave him some suppositories and topical cream. It has been very difficult for me to break the guilt pattern that has been instilled in me for as long as I can remember. I know that I constantly enable him allowing him to treat like his personal slave but it is so hard for me to stand up to him. I need help finding a support group that can relate to the Hispanic mentality of the upbringing that has been instilled in me over 65 years. I feel like I live with Fred Sanford (for those of you who can remember him).

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    • August 13, 2018 at 10:00 am | Posted by Theresa Guzman

      I am in a similar situation. Hispanic female 50. Took care of my father for his last 7 years. Now my mother lives with me & expects me to have no life. I work full time, have kids & grandkids. She makes me feel guilty every time i leave the house. The hardest part is she has dementia so, she continuously makes up stories and hears & sees strangers in the house. Constantly saying something is missing & blames me for allowing "those people" in the house. Truthfully, i have no friends. And my family shunted me when i put my dad in a hospice home for his last 7 days. (which were his wishes). Being a caregiver is lonely and unappreciative roll to take on. Its a true test of endurance. My best advice is to live your life. Don't feel guilty about having "me time". Have clear set boundaries and when they misbehave take things away. For example: i am silent when she misbehaves. Similar to putting a child into timeout. She thrives to get a rise out of me & when she doesn't, she returns to being nice. I plan for her to stay at my daughters for 1 night, every 2 weeks. So i can relax without guilt. Final thought... If you allow someone to take advantage of you, they will. Allow yourself the freedom to enjoy life. Give yourself the respect that you deserve.

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  8. January 26, 2017 at 9:22 pm | Posted by Doreen Ryan

    I am fortunate to be in good health at 90 and living in my own home. Carp was helpful to give me a couple of web sites about support through the city of Edmonton and the Federal Government. My If you can help me I would be grateful. Lawyers are not interested. Do you have light housekeeping service ? Doreen

    Reply

    • February 6, 2017 at 5:52 pm | Posted by Home Instead

      Hi Doreen, Wonderful to hear you're in good health and still independent at home! Home Instead Senior Care does provide light housekeeping services. There are two offices in the Edmonton area: https://www.homeinstead.ca/location-search-results?inquiryType=1&location=edmonton We encourage you to get in touch and they'd be happy to work with you to set up services according to your care needs.

      Reply

  9. January 3, 2017 at 3:02 pm | Posted by SteveR

    I care for my father fulltime. He's in nursing care on a memory care unit. They don't really do much for men, and there's little male interaction, either with other residents or care team members. Dad is thirsty for male interaction. He's a vet, but doesn't want to talk about jets or the war, and I find that he's bored a lot. We used to share everything, but now there's nothing to talk about that doesn't make him sad. So I just sit with him on days he's not very responsive and take each day as it comes, doing things together when he's responsive and has some physical energy. I need ideas, lots of ideas, to put into my toolkit. Things that will stimulate his interest. There has to be a place I can get these ideas. I'm constantly buying things (and mostly wasting money) trying to find things of interest. Going places doesn't always work because of his unstable energy level and his attitude changes day by day. Any help? Any ideas? Any place for support?

    Reply

    • January 24, 2017 at 7:05 pm | Posted by Kira Regianto

      I am a care manager and can relate to what you said. So many people in memory care are waited on, and therefore have no purpose to their day. I like to encourage my clients to do as much as they can for themselves.Music can be a great activity together. Playing a song and asking your dad his memories of the age/time it first came out, singing it together, etc. can be entertaining.With my clients, I try to bring in a book on a topic that is/was of interest and slowly go through pages. With one man it was on baseball and he could tell me about the fields and some famous games. If a person makes a comment from a certain picture, I use that to start a thread of conversation along that line. Photo albums can be used, but not to repetitively ask "who is this, who is that" if the person can't answer due to memory loss.Best of all - getting out of the community for a walk around the block (or via wheelchair), sitting outside, going for a drive, all help.Good luck, hope these ideas helped. Kira Reginato

      Reply

  10. December 16, 2016 at 9:13 pm | Posted by Chelsea

    I am a in-home caregiver, and lately it's been getting more stressful, and I always go above and beyond for my client, even doing work on my days off. I have been crying alot lately, losing sleep, and not going out enough on my days off! I care for my client, but take my problems home with me! How do I detach from work on my days off!?

    Reply

  11. September 5, 2016 at 1:56 am | Posted by Donna

    Yes, Where are the support groups for Autistic Adults? Please see our Fb page ...Brian Blakey from Arizona. My son is 37 and has been sick and disabled for 35 years and needs 1-1 care 24/7/365. I'm almost 60 with many medical problems of my own and no help in sight for either of us. ....I'm not the only older parent out there. There are many.

    Reply

    • September 12, 2016 at 2:51 pm | Posted by Home Instead

      Donna, I did a search and found "Autism Society of Greater Phoenix" You can find their website at: http://phxautism.org/

      Reply

  12. February 26, 2015 at 1:03 pm | Posted by Debra Hammel

    do you have support group for autism..Parents need help with the long term care of the adult disabled person along with help outside the community thank you please let me know..i am a widow with a young man that is my son that needs professional assistance thank you

    Reply

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