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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. August 5, 2019 at 3:59 pm | Posted by Duane Beach-Barrow

    My husband of 41 years, Robert, fell at home on July 21 and broke his Left Hip. He had his Surgery Tuesday the 23rd to implant a Rod and screws to repair his broken left hip. According to the Orthopedic Surgeon, the Surgeon, and the two Nurses, he came through it in a "Blaze of Glory" (he hasn't "Blazed" in years! Who knew?). I was with him when he went in, and was in his room when they brought him back. He is NEVER "Goofy" or "Spaced Out". Last night, he was orbiting Neptune! I left him in the very capable hands of the Nursing Staff around 11pm, came home, walked the dog, and went to bed and didn't move until 11am the next morning. I felt like I was the looser in a 10 man bar fight with Marines when I tried getting out of bed, but managed to go see him to discuss the next step in his treatment. The nurses managed to get him out of bed and walk the 6 feet to the sink and back. One sided doesn't come close to a description of our "talk". They have put him on Dulaudid for pain, with a Morphine Chaser PRN, so he was not very talkative. However, the doctor, the head floor RN, the Head of Rehab Therapy, the Patient Advocate for his Provider, and I had a very good discussion, and agreed that just to be on the safe side, because of his Type II Diabetes, Artificial Heart Valve, and age (71), coupled with his family history of Stubbornness, Obstinance, Bullheadedness, and refusing to be told to do something he doesn't want to do, that it was prudent and wise for him to stay in the hospital for a few more days, but would be moved to the Skilled Nursing Floor tomorrow, and to a Skilled Nursing/Rehab for two weeks on Monday. I have his Legal, Medical, and Durable Powers of Attorney, his Advance Directive, plus a Marriage License that give me the right to make these decisions for him (that will teach him!). I called at 8:30pm and was told by the nurse that he had been asleep since they brought dinner at 5:30pm (which he didn't touch), and was sound asleep, so I let him sleep. Lord knows he deserves it. But now, the really hard work begins - getting Robert recovered, healed, and back to where he's supposed to be. It seems that, wonder of wonders, and against the advice of Counsel, I WAS RIGHT ABOUT ROBERT'S MEDS BEING SCREWED UP!! They were giving him Dilaudid 4 times per day and Morphine once per day, and (here's the Cherry on Top) not giving him his HIV medication (Atripla) at the proper time (10:00PM) or in the proper form (WHOLE). After checking my old Pharmacy Technician textbooks, going to The Mayo Clinic website, and The National Prescription Drug Formulary, my concern about the CAUSE of Robert's hallucinations, dramatic mood/personality changes, etc, was justified! Because of the makeup of Atripla, it must be given at Bedtime and WHOLE. His nurse said, "she got busy and forgot, but DID give it to him the next morning !". She also forgot that she promised to help him with the telephone to call me. So far, Robert slept through the night, had no nightmares or hallucinations, and ate a substantial breakfast! Does ANYONE know of a Support Group for the Spouses of someone that has suffered a Broken Hip? I am so exhausted, over-stressed, emotional, terrified, constantly "don't know what I'm gonna do?!", can't sleep, short-tempered, can't get my act together in the morning, coming to the point of DREADING going to see him at the Skilled Nursing/Rehabilitation Center every day, blaming myself, stress eating/drinking, et. al. I've searched the Internet far and wide this evening over a 4 hour period and have come up with ZERO!! I feel so totally and completely ALONE and that NOBODY could possibly know the emotional rollercoaster I'm on or how it feels! DEAR GOD SOMEBODY PLEASE HELP ME GET THROUGH THIS!! Last night, I sent a three page list of complaints to Robert's Case Manager regarding the rehabilitation center he's at. They ranged from slow response time (up to 30 minutes) of the staff to help him out of bed to the bedside commode to the refusal of the staff to give him ALL of his medications, give them at the right time and dosage, to ignorance of the fact that he's a Type II Diabetic, and allowing him to blow off Physical Therapy sessions. HE IS NOT PROGRESSING after 6 days there, and if this continues, I'm terrified he will be an invalid for the rest of his life, which could be (according to statistics) not much longer. I'm at my wit's end!!

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  2. July 9, 2019 at 1:04 am | Posted by Cynthia Harvey

    My brother was born MR( mentally retarded) he is now in 4th stage Alzheimer's. He cannot wipe himself,wash hands, bathe himself, basically he can lift a fork to eat but that's all. He doesn't remember anything, not even 30 seconds later. He shakes, has been hallucinating alot lately and I moved away from home 6 1/2 years ago to take care of him and my Dad. My Dad passed a year later. I have no friends. No job is, no life. I read about isolation, stress, all the things a caregiver goes thru n about 6 years to late! If you were a care giver do not get lost in the hustle and bustle of caring for a family member meet people cares groups online Hugh can be that that fit whatever hobbies or Danes you like to deal go to meetings go find care giver meetings or coping with stress and anxiety do not get lost in the mix I'm just not finding myself again going to meetings to lower my stress and it doesn't help being resentful towards other family members that they never check interests in the sibling or the parent before they're not going to show much now nor ye'll it's just something that you can a hack just get past and don't dwell on it because when you really need them most of the time they will be there

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  3. May 26, 2019 at 10:21 pm | Posted by James Marohnic

    Mother is 93, lives in an independent living facility. She needs assistance with breakfast s s shower! She has Meneires Disease so suffers from dizziness, when these occur she needs assistance with getting up the bathroom because of the dizziness!

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    • June 25, 2019 at 7:01 pm | Posted by Kate

      I too am living with my 92 yr old dad 4 years now. Thankfully he's not bedridden but the daily BS is killing me. Nothing I do is good enough. Your mother didn't make meatballs like this I didn't clean the toilet bowl right I spent too much on groceries. The list goes on and on. My kids are tired of hearing it. Friends? Haven't bung out eith anyone in years. My job does get me out of house but then right back home. And God forbid I stop at WaWa fir coffee. I'm very resentful Im miserable

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  4. May 23, 2019 at 1:48 pm | Posted by Maria Victoria Brill

    I am taking care of my father who suffers from early signs Dementia due to stroke. My father has fallen victim to scammers online and despite numerous meetings with the police he continues to stay in touch with these scammer jerks and it just seems to keep happening no matter what I do. I know what your thinking just take away the computer but their will be hell to pay if I try to take it away from him he will become so angry. Furthermore, I feel bad to isolate him even more from the world than he already is. He cannot operate a car anymore and can not be held accountable for the finances for this I have financial POA over him. I have tried to block the email site that he uses to stay in touch with the scammer jerks but he always seems to find a way back in. I feel so powerless and am not sure what to do. I have two older brothers (I am the youngest and only daughter) who will help out occasionally with finances but are not supportive when trying to find long term solutions for my fathers care needs. Just like you all have stated I do not have a social life either. I feel that my father and I are a big burden to our families and that no one wants to help and its a terrible feeling because neither of us have done anything wrong to anyone. I am shocked at my brother's behavior towards my father as my father took care of my mother the entire time that she had Dementia. I am engaged to a wonderful man and have no idea when we will be able to get married being that I am the only child that cares for my father. I'm also moving and down sizing from a town house to an apartment with my father and their are so many things to take care of. I don't know if anyone of you have experienced this feeling before where you feel so overwhelmed with responsibilities that you don't even know where to start, where to begin and so you just freeze you don't even cry you just sit there and pray for a clear answer of what to do next where to start whats priority and whats not.

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  5. May 22, 2019 at 4:51 pm | Posted by Carolyn Jones

    Husband has cancer, ESRD, dialysis minimum 3 days a week, heart only 25% functional, spent 79 days in hospital with me not leaving him, coded once, in Life Vest. In nursing home for 2 weeks and expects me to be there 24/7, in his private room with only a hospital bed, for him. I have been driving back and forth on days he does not have dialysis, 150 miles roundtrip. I am 79 years old, worn out completely, have health issues of my own, 3 heart valves leak, usual old age aches and pains. And now, guilt, because I am not with him all the time. I even put my house up for sale, which I owned before we marries, so that we could move close to doctors, hospitals, dialysis, etc., and feel myself becoming depressed because I feel I should be with him but don’t feel able as I get no rest when I am with him as he expects me to do everything for him, and after driving so many miles, too tired to sleep.

    Reply

    • July 9, 2019 at 1:11 am | Posted by Cynthia Harvey

      You're gonna have to tell him that you're 79 years old and you have your own health issues that you given up your life you've given up your home you've been there for him driving all these miles and it's time that he lets the nurses and care people at his facility take care of him and that you have to have time to take care of yourself or you're gonna end up dead before he is!!! Maybe he's so dependent or just selfish but you have to take that step of putting yourself 1st because he never will. It's hard but seems like your burning both ends of the candle. Take care b God bless

      Reply

  6. April 22, 2019 at 1:32 pm | Posted by Susan M

    I am in the same boat. Only child too. She won't use her hearing aide. She demands I have to be there when she wants me there. I am there once to twice a day. I take of everything also. Never enough!! I am wore out!! She wants help only from me. I also am newly married and taking care of a new husband and step son. I am so wore out. Thank you for making me feel not so alone. Sue

    Reply

  7. April 14, 2019 at 7:14 pm | Posted by Tootie

    I'm about to scream. Dont know how much more I can take. Am so full of anger today.am so tired of talking like a damn robot and repeating myself 3 x in order to be heard but yet she says she don't need a new hearing aid. Have lost all my friends.and am an only child. Who really cares anyway.i am drowning in this and killing myself with all this overwhelming stuff. No one gets it unless u r going through it.

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    • April 22, 2019 at 1:31 pm | Posted by Susan Meier

      I am in the same boat. Only child too. She won't use her hearing aide. She demands I have to be there when she wants me there. I am there once to twice a day. I take of everything also. Never enough!! I am wore out!! She wants help only from me. I also am newly married and taking care of a new husband and step son. I am so wore out. Thank you for making me feel not so alone. Sue

      Reply

    • May 26, 2019 at 2:54 pm | Posted by Cherrel Evans

      I get it! My mom who will be 88 in July has lived with me for 12 long years. I'm resentful that I have to wait on her! Her knees are shot and she cant walk more than a few steps, so basically bedridden. I work full time, lost my husband 6 years ago and still had to care for her. I want to take care of ME! I still love her to be sure, BUT at what point do you say this stress is killing ME!??

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    • June 15, 2019 at 2:53 pm | Posted by K. B Burkett

      The line forms from Maine to California and back for individuals who are in this same situation. I'm an only child even if I was not it seems no matter how many siblings you have it boils down to just one doing the work. With this said first an foremost you must learn to say " NO " to some request made by them. It is not cruelty to attend to your health. Seek a therapist. You are by no means alone. And pray.

      Reply

    • June 23, 2019 at 3:47 pm | Posted by Mark

      I get it. It’s a lonely journey as an only child. I’ve been dealing w this since 2015. Lost tons of jobs, relationships crashed, I’m financially broke. I was hospitalized in October for exhaustion. Either she’s gonna die or I am.

      Reply

  8. March 18, 2019 at 9:42 pm | Posted by Rachel

    Hang in there. Your no good to help your dad if you let your health be run into the ground. Its good to have others to talk to that are experiencing similar things. My parents are negatively affecting my health and my relationships for years. My best friend got tired of hearing about them...she's like dont talk to me about your parents. Other friends say boundaries...just cut them off they dont understand i cant do that. Then my husband listens but has no replies. Where is the scream emoji? God help us.

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    • March 31, 2019 at 10:51 am | Posted by Annette Linden

      I am in the exact same situation. I get no help from my siblings. My sister hates me and won’t speak to me. She critizes everything I do for my mom. My brother is an alcoholic who is of no use to me. I have no one to help me. My husband basically doesn’t get it. I have the same situation with friends. I have basically lost all of them. I need help, I am going to go over the edge

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    • April 3, 2019 at 4:58 pm | Posted by Katie Strandberg

      Oh my LANDS!!!! Thank you for sharing and I’m so sorry - and I’m in a similar situation. My Mom is bedridden, and can barely speak. My Dad complains to me and wants to divorce, and I’m just bummed. My sister is a recovering addict, so she try’s but it’s touch & go. I would love to talk to my partner but unfortunately his Dad died earlier this year so I feel guilty to talk about my problems when he lost his Dad. I don’t know it’s a Shitty Time. But at least decorative pillows at Target exists.

      Reply

  9. March 16, 2019 at 9:02 am | Posted by Jerome G.

    54 yrs old. Took care of my mother until she passed 5yrs ago. Dad is 92 and has health/anger issues. No siblings to help my son lives with us but works full time so he's limmited in assistance. Been doing this for almost 15yrs. Now I have health issues...besides being BURNT OUT. Very limmited social life which is just the opposite of my past life. Advice?

    Reply

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