Support Groups for Family Members
Coping with terminal illness can be a difficult journey, not only for the patient, but for loved ones, as well. Seeking support from others who are or who have experienced the same thing can help immensely, though, making the process a little less painful.
Finding Support Groups
Each person has their individual preferences regarding the ideal support group, so choosing one can depend on a number of factors, including geographical proximity to a meeting location, availability of convenient scheduling, and a sense of connection to the other members. Often, it can take a bit of time to find the right fit, but the advice and camaraderie of others who understand is well worth the effort. In addition to in-person meetings, there are a number of sources for online support groups. A quick internet search is likely to result in a number of possibilities.
Solace and Understanding
Often, it can take several meetings before new members are comfortable enough to open up about their feelings, but seasoned members are sure to understand this reluctance. Talking to strangers about personal things can be difficult, but grief and illness support groups are filled with people who share a common sadness, making them sensitive to the needs of other members. It is not uncommon for outsiders to expect the grieving process to move along rather quickly, but for many, it can take quite a while before they learn to find peace and acceptance. The members of illness and grief support groups understand this and are generally accepting of each person’s need to grieve in their own way.
Specific Relationship Groups
While some support groups are open to anyone who is having trouble coping with the illness or death of a loved one, membership in others is specified by the relationship that the member has/had with the terminally ill patient. For example, there are groups available for spouses, siblings, children, and grown children, each with unique characteristics designed to meet the needs of that group. While all sorts of groups can be beneficial, those with others who most closely relate to each other’s feelings and experiences may be best suited to provide complete understanding.
An Open Forum
Often, friends and family members of someone suffering a terminal illness hold back from sharing their stress, anxiety, and fear with the patient or others who are close because they hope to avoid adding to an already difficult situation. While this is a noble intention, bottling up emotions isn’t healthy. Family members are often experiencing many of the same emotions as their ailing loved one, and finding a safe place to talk freely about their turbulent emotions can help make the process easier to handle. Not only do support groups offer members opportunities to reveal their worries, but helping other members to heal can in itself, provide hope. Members who have reached a place of acceptance can serve as examples to the others that although it might currently seem impossible, the pain will lessen a bit over time.
Far too many people try to put on brave fronts in times of crisis, but there is no need to do so. Support groups can offer members opportunities to express their emotions, helping them to heal and move on with their lives.
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i have a sister who has stage 4 kidney disease.She is not eligible for a transplant (age and general health) and has decided against dialysis.She has also retreated from the world (or at least from me) and I must suppose she is waiting to die.I want very much to be there for her and I need for my own sanity to have news of her.All of that seems impossible.Has anyone been here?Can you offer some help?Do you know of a kidney or mental health or terminal illness group I might contact?Thank You, Angie
angie - 23-Sep-17 @ 3:15 AM
@Karen - that's a really good question. Much of the time the agony of living with someone with cancer is the Sword of Damocles hanging over the head of not only the person, but of all those involved. It's also easy for others to say, 'just carry on with your life as normal' - but 'normal' doesn't exist because we are always looking for signs the illness may be worsening or is spreading into secondary cancers. I find I'd rather have some sort of conformation it would go one way or another, so I know what I'm dealing with and if necessary resign myself NOT to make any plans. Yes, people can say enjoy each day as it comes, but it's not easy, as each day has that sense of the unknown. I personally feel as though I am constantly on high alert or walking on eggshells with my husband because it is always so easy to say the wrong thing. Of course I want to spend the time with my OH, but both of us are often so quietly preoccupied with the what ifs that any special outings are often ruined by our individual silent thoughts. Liz.
EO45 - 23-Mar-17 @ 2:28 PM
My husband was diagnosed with stage 4 prostatecancer 2 yrs ago; 3 months after retirement. We already had bone mets. It rears it's ugly head intermittantly. Last year was spot of pain in his lower back, with successful radiation treatments.This year in his neck, having just completed radiation. He has ongoing low grade bone pain due to mets.
I retired 1 yr 3 months ago to spend time with him. What retirement? Frequently we make short term plans only to cancel due to discomfort.
Yes, I am angry (at whom?). We haven't had an opportunity we planned for. We have no timeline on lifespan: "you are more likely to die of something else". Pain is not cause of death; just an ongoing life style.
I have an awesome support group (by phone) with 3 individuals.
How do others deal with "limbo world"?
Karen - 23-Mar-17 @ 1:50 AM
My fiance is 49 and most likely won't make it to 50 or to the wedding.I have been working 60 hours a week to keep a roof over our heads and fed since he has been unable to work.I pray he is alive when I walk into the house every day, then mad that he has made such a mess.I am not good at this.
emilly - 11-Jan-17 @ 10:26 AM
Daphne - Your Question:
My son who lives in the Isle of Man started complaining he felt uncomfortable at 39. As he approached his 40th birthday he was feeling worse. His doctor told him he had IBS and asked him to do the stool sample, sent to most over 60's. He was declared clear of cancer and told to watch his diet and alcohol in take. On reaching 40 he was then sent for by the doctors and tests were eventually done. To cut a long and sad story short he was told he had advanced bowel cancer and needed a colostomy bag to even survive to his 40th birthday. This op done he then had chemotherapy and electro therapy. After about three months a scan showed that his cancer had now spread to his bladder and prostate, he needed an op to remove his bowel, bladder and prostate. This was performed and the family were told that he had 20/80 against surviving the op. He did survive and was declared cancer free. He lasted three months cancer free and was the told his cancer had spread to his bones and his lymth nodes. He has now been told he is at the end of his life and is in and out of hospital with various infections and blood transfusions. My husband has just been told he has to have open heart surgery, so yes I could do with a support group. I don't understand what my son may be feeling as he approaches the end of his life, he won't talk about it but very positive as his employer is so supportive. As a wife and mother should I give more support to my son or my husband who is not my sons father?
Our Response:
I am very sorry to hear this. I have included a link to the Marie Curie site here which will give you more advice on how to support your loved ones. You can give your support to the loved one that needs it the most at any particular time and hopefully you have other family and friends around that can also help share the care when times get tough. Also, do not forget to be kind to, and look after yourself too.
TerminalIllness - 25-Jan-16 @ 2:11 PM
My son who lives in the Isle of Man started complaining he felt uncomfortable at 39. As he approached his 40th birthday he was feeling worse. His doctor told him he had IBS and asked him to do the stool sample, sent to most over 60's. He was declared clear of cancer and told to watch his diet and alcohol in take. On reaching 40 he was then sent for by the doctors and tests were eventually done. To cut a long and sad story short he was told he had advanced bowel cancer and needed a colostomy bag to even survive to his 40th birthday. This op done he then had chemotherapy and electro therapy. After about three months a scan showed that his cancer had now spread to his bladder and prostate, he needed an op to remove his bowel, bladder and prostate. This was performed and the family were told that he had 20/80 against surviving the op. He did survive and was declared cancer free. He lasted three months cancer free and was the told his cancer had spread to his bones and his lymth nodes. He has now been told he is at the end of his life and is in and out of hospital with various infections and blood transfusions. My husband has just been told he has to have open heart surgery, so yes I could do with a support group. I don't understand what my son may be feeling as he approaches the end of his life, he won't talk about it but very positive as his employer is so supportive. As a wife and mother should I give more support to my son or my husband who is not my sons father?
Daphne - 24-Jan-16 @ 7:40 PM
don't know how to start, no time for caps, star. Tted as ovarian, told clear,now liver,lungs,pancreatic,spleen,abdominal, it wont stop.all inoperable, I'm only person to care for her. hospice brings meds, which they cut because she took too many at first to ease the pain,it was enough to kill her,now they have cut her to 10% of beginning! I have to keep those locked up, if anyone knows how to help hospice to worry less about being "under radar" as apposed to her pain, any info would be greatly appreciated! Thanks in advance. Tony
tony - 19-Dec-15 @ 9:15 PM
3 weeks ago my grandmother went to the hospital for pain from a hernia, she left with a diagnoses of stage 4 pancreatic cancer that spread to her lungs and liver and 3-4 months to live. She was rushed to the hospital today where we were informed that she actually has less then 4 weeks left. I haven't even grasped the fact that she's sick let alone dying. I'm trying to hard to be strong for her and my mom, but sitting here watching her die is more then I can handle. I've never lost anyone really close to me, I don't know how to do this.....
Krystal - 17-Oct-15 @ 4:25 AM
My mom and I rent a house.She had attempted TAVR surgery recently, but it was aborted, too risky....other than another attempted surgery, there is nothing that can be done for her Aortic Stenosis and she is refusing a second attempted surgery.She seems not to understand that her time is short and I do not want to force the issue.She is not bedridden and does a few things around the house and I believe this is good for her.But, I am stressed beyond description and I pray everyday.Medical experts say she will probably go quickly but there is a chance she will become more symptomatic.....it a crap shoot......she wears a medic alert when I have to leave but, I still have anxiety when I DO have to leave the home......I have family, but they are not available 24/7.Guess I just need someone to tell me I am doing all I can.
jen - 15-Oct-15 @ 4:15 PM
My son who is 57 was just diagnosed with inoperable brain cancer.He lives in a different state and so I am unble to travel.I feel so completely overwhelmed and grief stricken.He was a vibrant man, owned his own business and after years of working 16 hour days had finally got it running smoothly, loved fishing and the outdoors and this had all been taken away.I don't know if I'm angry, heart broken, confused,etc or all of the above.The cancer is in the center of his brain so any treatment he has is going to result in serious side effects.I try to do everyday things but end up sitting and crying.I know there are other families going through this so if anyone has any adive it would be greatly appreciated.
bettysimmkons5635 - 17-Jul-15 @ 7:24 PM
@Lencie - This is very sad. The lovely thing is though, is that you have had a wonderful life together and that should be celebrated as a most precious thing. Losing someone can be incredibly painful, but they are always with you really. You have been very brave to keep it from her, I know what that feels like as I had to do the same with my mum and I found it so hard. I hope you manage to make yours and her last days special for each other, no matter how ill she is that love will still shine through. I also hope you manage to find support and caring if the inevitable should happen. Wishing you all the very best.
Billie - 21-Apr-15 @ 10:33 AM
My mother ha terminal cancer and a host of life-threatening illnesses. She is deteriorating quickly.She is on so much pain medication that I can't even talk to her most of the time.I have tried so hard to find a way to help her when was first diagnosed.I feel like the health care system could have done more to treat her.They dropped the ball in so many ways.My mother does not understand why she is feeling so bad and wants to get well.The last thing she was told is that she was cancer free by her doctor.Then four years later I was told the cancer came back.I have not be able to tell her because, I don't want her to lose hope and become more depressed.I love her so much.We are so very close.I cannot imagine my life without her.She has always been there for me.I am a two time breast cancer survivor and have been through many surgeries.She has always taken care of me.I cry all the time and I hurt all the time.I don't know how I'm going to live without hearing her voice or see her face again.I can't sleep and all I feel is sadness.She has always been there for me.She has sacrificed her whole life for her children.
Lencie - 18-Apr-15 @ 4:52 PM
Hi Joy,
I have been diagnosed with terminal cancer last month, so it's still unreal for me at the moment. I am 49 and have one son aged 23 who lives 250 miles away,I also lost my partner recently so feeling very alone...perhaps we can support each other?
Looking forward to your reply
Kind regards
Caz
Caz - 28-Aug-14 @ 5:19 PM
Hi Iam a woman with terminal cancer, I would love to speak to anyone about this as I feel very lonely with this illness, is there anyone out there ,help
Joy - 8-Aug-14 @ 3:23 PM
I would like to discuss with other wives of terminally ill husbands how they are coping. I also have two teenage daughters.
Wing - 24-Jul-14 @ 2:33 AM
Hello....please help. Is there a support group for family members of the termially ill in or around the Bloomington, Indiana area? Thank You
Emerald - 18-Feb-13 @ 5:29 PM
Help, my partner has kidney disease and does not want dialysis. I need to have someone I can talk with and grieve with as this is very hard for me.
kidney - 9-Oct-12 @ 6:31 AM
Looking for support of functioning, 91year old parent ,who is able to live on own but has advance squamous cell cancer /tumor of one eye.only child, assisting with everything.trying to deal with anxiety and stress of situation, also stress over financial potentials, since she has not yet entered hospice. now trying erbutox iv therapy after radiation attempts.Looking for ways to cope and possible support groups/suggestions with trying to find assistance that may be helpful.
Kennedy - 3-Jul-12 @ 4:31 AM
My neice who is 24years old, has a 3year old son, who was born with a brain tumour, and 4months ago, was diagnosed as terminal, with only 2mth-1year to live.My neice isnt speaking to anyone, as it all feels too real, and she cant cope, and the rest of us, are just as bad, we really need help to cope with this.Can you suggest the best possible organisation or anything you may think beneficial for my neice individually and the rest of us for family advise as of how to help my neice.Please help as we are all in a state is disbelief and we are not coping with this well at all.My neice needs help to live with this until the day her son passes away, and she will need help wi th the bereavement afterwards.This is very hard for me to send and ask for help as like my neice it all seems just too much to accept.
georgia - 28-Dec-11 @ 11:03 PM
I also need a support group of some kind. My husband is at home under hospice care for his chronic heart condition. He has 17% ejection fraction(?) and CHF, diabetes, strokes, etc.He has had 8 heart attacks and is no longer able to undergo any type of surgeries or treatments except oxygen and lots of meds. I am 13 yrs younger than him and am feeling depressed about everything. I am scared and am sometimes impatient and hate myself for it. I feel overwhelmed and on other days I am in denial altogether. Anyways, dont know what happens after i put this into cyberspace, but it feels better to type it out
ShannyJo - 28-Dec-11 @ 7:24 AM
Looking for a grief support group. My daughter has a terminal illness and I would like to be around others who are experiencing this type of grief.
Kathy - 7-Dec-11 @ 3:15 AM
I am in need of a support group as my best friend is a young woman dying of ovarian cancer. I need someone that I can discuss my feelings with regarding her dying.
saddsaxx - 21-Sep-11 @ 5:29 PM
I read the above comment and was amazed . That someone else out there is dealing with the same thing as I am.My husband got diagnosed 6 yrs ago with CHF at the age of 41. The ejection fraction was below 30 then. His Dr. said he would be lucky to make it 4 yrs.Since then he has had 2 strokes and at least 1 heart attack that I know of. At that time are youngest boy was 5. Today he is 11 and I finally had to tell him his dad isn't ever going to get better only worse. What every parent hopes never to have to tell there child .It gets better I am a caregiver for my chosen profession which deals with the terminal ill. I work long hrs and have to ask my kids to not only care for themselves but to watch over there dad . I really need someone to talk with cause am at my wits end . Forgot to mention he is still trying to work cause he thinks we wouldn't be able to survive with his income. And as sure as I am writing this I know he is having TIA's. If anyone can help me find a group to join I would be so thankful ! I feel I have the weight of the world laying on top of me.
Carol
Ka - 24-Jul-11 @ 7:22 AM
How do I find a support group for me--I am under alot of stress and anxiety and really need someone to talk to. My husband has a heart condition that has been going on for the last 10 years. This year we have had several set backs adding to our stress and fear and pain. He is a tough guy type and doesn't want to talk at all about it but I do and really need to talk to someone.
Sue or Susie - 6-Jun-11 @ 8:41 PM
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