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seeking caregiver support group

hello, I'm brand new here, and not quite sure how to use the forums. So I'll jump in. Is anyone in a caregivers support group?

I feel like I'm going to lose my mind if I don't have opportunity to talk about all the conflicting feelings arising from suddenly becoming partial caretaker of my father. I live in NJ.

Is this a place where people talk about their feelings?

I cannot be the only tormented person here.

I would like to share with people taking care of a parent or other loved one.

AARP Expert

@EllenR643118  Hi Ellen - There are a few additional ways to find a support group other than the good tips you've found here - I also see that the link Jane sent doesn't work so here are others to try:

 

  • If caring for someone who has Alzheimer's or other forms of dementia, you can go to www.communityresourcefinder.org  and click on the Alzheimer's programs and events area. Then put in your zip code and there will be a list of support groups you can go to. 
  • This article, "Caregiver Support Groups Offer Valuable Help" gives you some ideas of where to look also. 
  • The Family Caregiver Alliance’s Family Care Navigator tool helps locate state-by-state assistance for family caregivers.
  • The Eldercare Locator is a public service of the U.S. Administration on Aging that connects you to services for older adults and their families. They can also be reached at 1-800-677-1116 and you can connect with your local area agency on aging and ask for a list of local caregiver support groups. 

I hope these resources are helpful! You are so wise to be seeing a support group - no one understands like someone else who has been or is going through it. And many support groups also offer educational speakers etc. that help you connect with services in your area. 

 

Good luck and let us know if any of the ideas we've provided lead you to a good support group! AND remember that we are your online support group! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

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hello Amy,

thank you for your reply and for a lot of good information.

I am not exactly a caregiver now. In the time of my initial post, to now, my father has gone into home hospice. It was his doctor's suggestion, and  I am really glad she made it, cuz my father in the last 5 weeks has been declining rapidly. Now, he has a 24-hour aide, and he seems to like him. It is actually only Day One, so we will see. ;). 

I hope it does, my father needs 24-hour care, and I cannot do it.

Still, I think in the next couple of weeks, I am going to check out the two support groups I found  (by Parker House in New Jersey). Cuz ya never know.

 

thanks for your support.

 

ellen

AARP Expert

@EllenR643118  I'm so sorry about your Dad's decline - and at the same time so glad you have hospice to rely on. My Dad passed 10 months ago (I cannot believe it's been that long - seems like 10 days) and we had hospice the last 4 months of his life. It was very helpful! And ask hospice about any support groups they have available also. They definitely will be able to refer you to grief support eventually. 

 

And remember, even though your Dad has hospice care, you are still a caregiver. You are still making decisions and ensuring he gets good care and perhaps you are managing finances, legal issues his home etc. Your role has changed but you are still a caregiver! So yes - still good to have a support group! 

 

My heart goes out to you - so glad you got some support!

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

 

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I tried that site,,but says nonexistent. I also many husbands caregiver. Just enrolled in Hospice, He has inoperable liver cancer, chirrosis of the liver and suffers from H.E. I gave no family support and could really "talk" to others with same difficulty, he is a vet. So I gave applied for aid and assistance over a month ago but no response yet. We are living off our social security..which we all know isn't enough. So if anyone knows how to get into a support group in Virginia,please let me know. Thanks forletting lettingme event. Good luck to all.
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@NancyT525328 wrote:
I tried that site,,but says nonexistent. I also many husbands caregiver. Just enrolled in Hospice, He has inoperable liver cancer, chirrosis of the liver and suffers from H.E. I gave no family support and could really "talk" to others with same difficulty, he is a vet. So I gave applied for aid and assistance over a month ago but no response yet. We are living off our social security..which we all know isn't enough. So if anyone knows how to get into a support group in Virginia,please let me know. Thanks forletting lettingme event. Good luck to all.

Hey Nancy. What part of Virginia? What i would do is ask the Hospice social worker, and/or the chaplain, for that information. Which site did you look at? Sounds like your husband had a hard life, just guessing from being a veteran and then perhaps drinking alcohol to cope with the ptsd. He is lucky you are his wife, and you deserve support in every sense. Tell us more? Call the hospice social worker? I used to be one and we'd only visit every few weeks unless there was an issue. But we are support to you for free.

 

And i wish the VA moved faster. Darn it.

 

Ask the social worker about other sources of support financially, too. Perhaps you are eligible for stuff that would help your social security checks go farther. 

 

SO GLAD YOU WROTE.

Jane

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Thank for the reply, I live in Midlothian Virginia. We have Hospice ,,,they come once a week unless we need her..the nurse.more. Thank God for the V.A. They have picked up his medical payment..most of them..these past 4years when he was diagnosed given then 12 months to live,  He very it that time...but won't this time.

Just to have someone else to " vent to" is helpful ..but having few friends that come around are null. I have one sister I can call when she can talk but she and all my kids have problems of there own and I don't want to add to there stress. Just doing this helps. Ty

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@NancyT525328 wrote:

Thank for the reply, I live in Midlothian Virginia. We have Hospice ,,,they come once a week unless we need her..the nurse.more. Thank God for the V.A. They have picked up his medical payment..most of them..these past 4years when he was diagnosed given then 12 months to live,  He very it that time...but won't this time.

Just to have someone else to " vent to" is helpful ..but having few friends that come around are null. I have one sister I can call when she can talk but she and all my kids have problems of there own and I don't want to add to there stress. Just doing this helps. Ty


Vent away, Nancy, glad to have you here.

 

You're about 30 minutes from Richmond i see. I found a support group in the early afternoons once a month on a friday at https://jfsrichmond.org/caregiver-support-group/  just by googling "caregiver support group richmond va."  Looked like there were other groups,too. 

 

Just a thought: stress shared is stress halved. We grow closer to our family members when we share what's really happening. Heck, it's a relief for me to hear what my sister is obsessing about because its a refreshing change from my obsessions!

 

Let us know what the social worker advises. I hope she's a seasoned one who has lots of ideas.

 

Keep writing, and thanks,

Jane

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Posted this without my glasses..so I am sorry words got jumbled. I am my husband only family support and it gets quit "trying" at times.
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@EllenR643118 wrote:

hello, I'm brand new here, and not quite sure how to use the forums. So I'll jump in. Is anyone in a caregivers support group?

I feel like I'm going to lose my mind if I don't have opportunity to talk about all the conflicting feelings arising from suddenly becoming partial caretaker of my father. I live in NJ.

Is this a place where people talk about their feelings?

I cannot be the only tormented person here.

I would like to share with people taking care of a parent or other loved one.


Hi Ellen, jumping in is the best way. You can start up a new topic or respond to an existing post, or simply tell your story with a theme, like, How do you all get siblings to help? Or, how come i'm so resentful of this new role of caregiving? It's all fair game.

 

My guess is that you were unexpectedly tasked with becoming 'partial caregiver' for your father. Since it was 'sudden.' And that you and your father have not always had a perfectly harmonious relationship. Perhaps the suddenness came from someone else dropping the responsibility of caregiving, or  maybe he had a sudden deterioration of his physical condition, like a stroke or a bad fall. And, I'm just guessing here, but if he is your typical male human being, socialized to be boss/Father/Independent & Self Sufficient man, he is none-too-pleased to NEED caregiving, however partial. 

 

So on top of whatever else you had going, job, family, your own health needs, you now have to add, or choose to add, 'partial caregiving' to the to do list. And that's another part time job, depending. Is he in NJ, too?

 

Support groups for caregivers can be really helpful.  AARP has developed some cool tools to help you: https://www.aarp.org/caregiving/answers/info-2017/family-caregivers-support-groups.html   

 

As for mixed feelings, I have relied on psychotherapists over the years to listen to me for 50 minutes so that i can sort out how i feel, and work through the resentments or old grief, or whatever, so that i can bring my best self to the task. NJ must have good resources. I live in very rural Oregon: i have to drive 2 1/2 hours to see my therapist so i go only once a month.

 

Tell us more and thanks for writing,

Jane

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I've been a FT and now PT caregiver for my parents for almost 5 years now. I know the stress, disagreements, uncooperative situations caregiving can bring. I happen to have moved in to their home, while they could not stay without someone else here. My mom is diabetic, overweight, has problems with osteoarthritis and her blood pressure. She can be a bit extreme when it comes to her emotional health. She often will over exaggerate her conditions. Telling things like she is in a wheelchair. (not true) Or that she is being abused (definitely not true!) Me and my father who is a vet and also with dementia and fallen arch with his one foot caters to her "almost" every wish from the time she gets up til the time she finally decides to go to bed, which can be into the wee hours of the morning. I hate to think of them having to receive care in a nursing home. I do my best, great housekeeper and cook, giving bed baths. But, most of the time it just never seems to be good enough. You ever had someone make you feel that way? She doesn't realize the sacrifice of any social life or love life or vacation I make. SOOO... I am searching also for a support group here in NC. Smiley Frustrated

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I needed to add something to my complaints. Don't get me wrong! I love my mom. I do, as all caregivers, need to find a way to deflate. Caregiving is overwhelming. It does affect the person emotionally and physically and financially. So, understanding of resentment at times I believe is natural, unless you have a healthy financial platform! But, don't let it become permanent major thing to define you!  You are sure to experience a multitude of emotions, but knowing how to handle this is the key to a healthier relationship. I am thankful for Aarp to have this opportunity for caregivers to share their experiences!!  Heart

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@AngelaW998386 wrote:

I needed to add something to my complaints. Don't get me wrong! I love my mom. I do, as all caregivers, need to find a way to deflate. Caregiving is overwhelming. It does affect the person emotionally and physically and financially. So, understanding of resentment at times I believe is natural, unless you have a healthy financial platform! But, don't let it become permanent major thing to define you!  You are sure to experience a multitude of emotions, but knowing how to handle this is the key to a healthier relationship. I am thankful for Aarp to have this opportunity for caregivers to share their experiences!!  Heart


Hey, Angela, you are so right.

A couple of things will also help the resentment:

1. self-care, drawing boundaries, getting time off

2. Try to avoid martyrdom: find others to help, and/or help your parents to use their money to pay for more help.

3. Handling emotions does not mean sweeping under the rug! Or trying to be cheerful when you are furious or very hurt. Maybe take up journaling so you have a place to dump. And feel free to dump here.

4. Consider therapy. You can sort out your childhood and your caregiving role in the healthiest way. A two-for-one benefit!

 

That was 4 things not two.

 

So glad you wrote back. Keep it coming,

every day is fine!

Jane

Contributor

Thank you Jane!

 

That's my my middle name by the way! I am a live-in caregiver. My daughter thankfully has stepped in to alleviate some of the responsibilities of caring for my mom. Being a live-in and without a car makes it difficult to "make time for me" I'm glad there are options to not feel like you are in it alone.

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@AngelaW998386 wrote:

Thank you Jane!

 

That's my my middle name by the way! I am a live-in caregiver. My daughter thankfully has stepped in to alleviate some of the responsibilities of caring for my mom. Being a live-in and without a car makes it difficult to "make time for me" I'm glad there are options to not feel like you are in it alone.

 

 

Hey, Angela Jane!!

I hope there's some sort of public transportation, or Uber, or something out where you are so that you can get a change of scenery. And thank goodness for your daughter. Just know that you do not have to suffer in order to care for your mom. And keep writing here. Lots of wisdom. Which you are already sharing with us!

 

Jane


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@AngelaW998386 wrote:

I've been a FT and now PT caregiver for my parents for almost 5 years now. I know the stress, disagreements, uncooperative situations caregiving can bring. I happen to have moved in to their home, while they could not stay without someone else here. My mom is diabetic, overweight, has problems with osteoarthritis and her blood pressure. She can be a bit extreme when it comes to her emotional health. She often will over exaggerate her conditions. Telling things like she is in a wheelchair. (not true) Or that she is being abused (definitely not true!) Me and my father who is a vet and also with dementia and fallen arch with his one foot caters to her "almost" every wish from the time she gets up til the time she finally decides to go to bed, which can be into the wee hours of the morning. I hate to think of them having to receive care in a nursing home. I do my best, great housekeeper and cook, giving bed baths. But, most of the time it just never seems to be good enough. You ever had someone make you feel that way? She doesn't realize the sacrifice of any social life or love life or vacation I make. SOOO... I am searching also for a support group here in NC. Smiley Frustrated


Hey there, Angela, 

For one thing I'm glad you are now PT caregiver. What changed? Did your parents hire professional caregivers, and/or did other members of the family pitch in? 

Sounds like your father, and maybe other members of the family, have catered to your mother and she has been 'enabled' to be a self centered person. I'm reading here between the lines, but it doesn't sound as though she was a particularly generous person before she became more disabled, but i could be wrong. 

 

Do look for an in-person support group, and try https://www.aarp.org/caregiving/answers/info-2017/family-caregivers-support-groups.html  if you like. 

 

I'd also enlarge the caregiving circle to other family if it all possible and develop a team approach. And my best advice is to find a therapist who can coach you through some new behaviors; because in order to stay sane in such an environment, you're going to have to act differently. And that takes practice. And support.

 

Tell us more....

 

Jane

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Angela-I feel like you and I are in very similar situations. Too bad we don’t live in the same state! Here is my post that made me think we live similar situations! If I find any help or more info, I will definitely send it your way. Best of luck and know you and your family are in my prayers!

 

just came across this site and am so glad I found your post! I’m a 41 year old only child (also happen to be an RN) who moved back home after 23 away living my life to become my mom’s full time care giver. I moved back and basically gave up my entire life on 9.29.17. I moved into my mother’s home as she is completely unable to live alone. She is completely bedridden (due to morbid obesity), Type II diabetes, hypertension, depression, osteoarthritis, etc. I am at her beck and call 24/7/365. I am the full time housekeeper, full time cook, errand runner, grocery shopper, bed pan assistance, adult diaper changer, giver of daily bed baths, etc.  I have not slept more than 3 hours at a time in 6 months because she wakes me through the night for random things. I love her and do not tell her no and very rarely vent my frustrations to her. The things she wakes me for: please come scratch my toe (due to her obesity she cannot reach her feet-well she prob could with considerable effort but she doesn’t try), can you move my pillow, can you find my glasses that have been lost in the hospital bed (usually within breath sight and reach), etc. she has not been out of the hospital bed in her home since 10.31.18 when she last came home from a hospital admission. I have 5 fur kids of my own and also take care of mom’s two fur babies. You only get one mom though and I love mine dearly! I am definitely starting to see that some things need to change (I’ve just come across the terms caregiver stress and caregiver exhaustion-actually was diagnosed with those during a recent unexpected ER visit!) and I’m just now starting to look around for what support groups and other resources are around for people who do what we do. I can usually only be gone from her house for about 4 hours at a time because she will need food, drink, bedpan, etc and I am the only option! We have used sitter services in the past, but that doesn’t last long as mom really only wants ME to do things for her. Also, I am doing this for ZERO pay. I would never expect to get paid to help my mom, or anyone in my family for that matter, but it’s to the point it is truly impossible to get a job as there is no way I could be gone longer than 4 hours at a time!). And if by some miracle I could be gone for 8-12 hours (typical hospital nursing shifts), I would walk back into a list of things to be done because mom wants ME to do them, not whomever was here helping. That’s one of the reasons we stopped using a sitter, they basically sat here and would do some cleaning but mom wouldn’t let them do anything else for her. NOT because the sitters weren’t willing-they were all wonderful ladies; it was because she prefers I do it. It made the sitters bored and feel like they weren’t doing their jobs-and thru no fault of their own! Say for instance, sitter here for four hours. I would go to the bedroom I’m using just to be alone for the solid four hours-now, maybe 45 minutes max before mom is calling asking for my assistance to show the sitter “how to do it” or to help the sitter. Ighhhh.

 

I apologize to everyone for the lengthy and all over the place rant! 

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Dear Rachel,

I'm not sure I should say what i'm thinking re your post, bec. you did not ask people to offer their opinions. 

I will say that I'm glad you are seeing that some things need to change, and that you are looking for caregiver support.

Just generally, imo: a caregiver needs to take care of themself.

Getting 3 hours a night is not taking care of yourself. imo, your mother can wait for morning to have her toe scratched.

My situation is very different than yours: I am a very part-time caregiver.

Still.. when I would enter his house, my father would immediately say, get me this, get me that, do this, do that. Now I understand, he cannot do these things. At the same time, I had to let him know that when I walk in, I am often - hot, hungry, tired, thirsty, etc. - and sometimes I need to rest before I do anything else. (I am 72 years old. Healthy, but do not have as much energy as I'd like to have.)

My point is I had to set some limits.

I have a lot more to say 🙂 but I am new to this board, and do not want to start giving people advice. It is probably not my place to do that.

But I must say, I am concerned for you....

 

very best,

ellen

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Dear Jane, I clicked on the link you provided to Angela- https://www.aarp.org/caregiving/answers/info-2017/family-caregivers-support-groups.html and got a msg that the page does not exist. Perhaps a typo? thanks.
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Good morning! I put the same link in my reply to you, too, and they work for me. Try this: google "aarp.org 

How can I find support groups for family caregivers?"

and that should work. 

Jane

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hello Angela,

you say, "it just never seems to be good enough. You ever had someone make you feel that way? She doesn't realize the sacrifice of any social life or love life or vacation I make."

I totally understand!

My father makes me feel the same way.

You are doing a lot.

I found the United Way in NJ to be helpful re finding one possible support group. Maybe see if there is a United Way near you.

 

good luck.

 

ellen

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