Hi Dana, thank you for this opportunity. Being a caregiver for the past 9 years, I find that people rather disappear from my life, instead of supporting me.

When my husband was diagnosed with cancer, he was already terminal. He was very angry and a horrible patient, but I cared for him until his death. My youngest daughter is Down Syndrome, and she started deteriorating mentally and physically about a year before my husband died. Colleen will soon be 21, and she is on nappies, oxygen, and lots of medication now. I am stuck at home with her, and live completely isolated from the outside world.

The worst part of caring, is the fact that friends, relatives and church members have completely disappeared from my life. Whenever I try to reach out to any of them, the conversation is usually very short, and I am always told how very busy they are. No-one will ever contact me. Fortunately my two older children are here for me.

I also do not have the privelage of being sick in bed myself. I simply have to carry on, no matter how I feel. Eg, last year I tore my arm muscle in two places, but could not have the operation done, because no-one else can look after Colleen.

I love Colleen very much, she is my reason for living! But at times life just gets too much to handle.

I honestly hope that you will be able to help caregivers in future, by making society aware of our needs. Thank you for really caring!

I have to agree with Andelene about "friends" disappearing. I've only been doing this for 8 months (mother with cancer, sister with BRCA1 Mastectomy) and I'm already seeing it. I can only imagine how isolating it is do to it for years.

I have sent my friends updates and mentioned how I'd love to hear from people. I've asked a few times about going out for lunch. I get ZERO response. I've talked to my closest friend about it and asked why I'm being ignored by the majority of our social circle. . She says "They just don't know what to say".

Maybe your program could focus on how to talk to caregivers and how to spend time with them without feeling uncomfortable. Quite frankly, I'd be THRILLED with just a phone call now and then letting me know they are thinking of me and letting me talk a bit.

Caring for my Mom and sister is not the hard part. It's feeling so alone and isolated that makes me feel burned out and depressed.

I am glad I found this group. I'm hoping having a few online friends who "get it" will help.

Friends definitely disappear. My mom and I moved to Florida from Indiana because the doctors just didn't think she would survive one more winter. She has nodules in her left lung and has massive problems breathing. I was already losing contact with my friends. But now that I am over a thousand miles away it has really became nonexistent. I have my boyfriend and he tries to get me involved with his friends but they don't accept me for me really. I can't even get my brother to call me on the phone once in a while to see how I am doing.

I also need support with trying to deal with the guy my mom is "seeing". He thinks he can show up when he wants and when it's convenient for him. He's greedy and only cares about himself. And then expects me to like him. He doesn't see my mom at her worse and walks away when she starts to get really bad. He doesn't seem to understand that the meds make her worse and thinks that she should be fine. I can't get him to get what's going on and I can't get her to realize that hes just dragging her down more. I've never been good at standing up for what I believe in and I usually just keep my mouth shut.

Mom wants me to move on with my life, But without the support of anyone in taking care of her I can't leave her. I just need someone to help me and understand what I am going thru outside of a website.

Thank you so much for your replies. My heart was heavy with empathy as I read each one. I have been through many similar experiences. The isolation and social aspects are truly among the roughest parts of the whole thing. I kept thinking to myself "If I knew someone going through this stuff, I'd be reaching out all the time! Why don't people do that? It only takes a moment!"

But I suppose many people never have to stop and think of what the caregiver role is actually like (maybe they CANNOT bear to think of it without getting too uncomfortable). I'm learning that some people need to experience hardship first hand before they are able to open themselves to the challenges of others.

I would very much like to keep you all in the loop of what happens with my caregiver project (starting in a few months). Your input is so valuable. I want these voices to be heard and honored!

Hi Dana and welcome to our Caregivers group!

I agree with others about friends and family support drying up, disappearing. It's there at the beginning but then weeks turn into months turn into (yikes) years.... and it feels like you've been forgotten and life has gone on without you...

My biggest challenge is having to handle it all on my own. It is just my husband and myself and caring for him, since his stroke, is a 24/7 job--he is wheelchair/bedbound and has a feeding tube, wears diapers. My wish come true would be a guy at my front door with a lawn mower, rake and pruning shears to help keep up the yard! Home maintenance has been brutally hard to keep up with on top of everything else and with our limited financial resources I cannot afford to hire someone and it sometimes feels like the house and yard are crumbling around me.

Thanks for listening and good luck with your program!
Molly

Molly, I appreciate your reply. Thank you. I remember how difficult it was caring for my mother full time when I had my own serious health complications. You make a great point about home and yard maintenance. We were putting SO much money into medical care, and I was nowhere near healthy enough to do yard work so we couldn't pay for much to be done.

We actually had some luck with volunteers from local church services (despite the fact that we were not a religious family). Have you explored this option in your area?

Good luck!

How do you find out about "church services"? We do not belong to any church, nor do I really know anyone who does. It would feel weird to just call up churches on the phone and ask them to mow my lawn! I tried googling it, but am coming up with nothing.

Thanks.

new here. my friend started hospice 2 weeks ago-liver cancer/AIDS. Myself and his other friend are the only caregivers. I live with my friend to help out and thought it was going to be cooking, cleaning and transportation in exchange for room and part utilities.It worked out for a few months.
His condition has deteriorated drastically. He is coherent at times and then drifts off and tries to get out of bed to go to the bathroom by himself. I wake and try to head him off with his walker so he doesnt fall. He doesnt want to use the commode or diaper just the bathroom.. He has fallen several times . I have called hospice each time to check him over. He will listen to them, but not me. I feel like I am failing as a friend. My husband died a year ago this week (heart failure-only sick 4 days). I feel like I am falling apart going through death again.
this is all so new to me. Compared to others, I think I am whining- how do you cope?

Hi Dana,
This is a wonderful project and I'd be happy to help in any way although my time is limited; this is important to me and I just joined because I'm at the breaking point in my caregiving journey.

I've been caring for my husband for 8 years and we live with his parents as he needs full time help. I'm thankful to be around folks older than us with more life experience/hardships as I'm often alienated around my late 20s early 30s age group. It can be so hard to relate and it's not always anyone's fault. I will be interested to know how this project develops.

I think one of the best things is a site like this where you can simply read the day to day frustrations and not feel so alone. It's hard to talk to friends who talk about their normal lives-- I wish they would be more sensitive sometimes! Yeah, educating them on how it would feel to be stuck at home with someone who can barely walk then hearing about their family vacation is not a great conversation always. My point is that it's crucial for us to be able to talk about OUR end of things with folks who understand.
Some of us don't live in places where we can get to a caregiver support group so this means a lot. I appreciate a place where you can be honest and yourself.

Thanks and feel free to contact me if you want more input.
Best,
Roxie

Hi Dana, thanks for your interest and your project. I've been a caregiver for 17 years and have to say that family and friends have disappeared during the past 7 years that I've been a 24/7 caregiver. I only hear from them when they want something. They seem to think that since I'm home as a full-time caregiver and also lucky enough to have found a full-time job that I can do from home, that I have time to do things for them. People really don't understand what it is like to be a 24/7 caregiver, but when I try to have conversations about what it entails, they become uncomfortable. I suspect that all they hear is "No, I can't do xyz for you."

Online groups like this are great because just reading others' entries makes me feel less alone. I can log on when I have time. Going to a support group would be difficult if there were one nearby because of the uncertainty of my schedule.

My wish would be that society be made aware of family caregivers, what caregiving entails, and how simple kindnesses--a phone call, a meal, a run to the grocery store, a mowed lawn--makes a world of difference. We didn't plan to become caregivers--situations happened and we are doing what needs to be done. But I wish we didn't have to do it in isolation.

Hi Dana. I have been the primary care giver to my wife since her Brain Injury 8 years ago. I have 3 sons who are young adults now, with just one still living at home. My wife needs direction/ supervision 24/ 7. I have been lucky that I have support for her during the day so I can still go to work full time. Work is an escape. Weekends and evenings and nights I'm it. I agree a tough part for me is the isolation we feel from former friends and family. Its hard for caregivers to reach out for help. Fatigue for caregivers is a way of life and I think a lot just accept it. I also echo some of the comments from others . I find people treat me differently once they know I'm a caregiver to my wife. So I try not to bring it up and I really regret it sometimes when I do. A site like this is a great outlet. I feel I could write a book on what we've gone through, so good luck with your project.

I am knew here to.Though I'm very interested in hearing more about your project.
I must say this is the first time in 11 years that I read and I find tears coming down my face but not of sadness Rather from release of something long held in.
I am sole care giver of my mother who has Parkinsons Disease(after seeing my grandfather have severe Parkinson ,as a child)
We are also dealing with heart disease and diabetes.
My father died 12 years ago.
My 3 brothers and 2 sisters have disappeared,with thier busy lives,etc.
I'm epileptic so I do not drive any longer...isolation is severe because I m home 24/7 to care and reassure mother .I'm slowly losing my best friend as well as mother to demensia
I also TOTALLY understand what it is like to not have anyone to talk to ,..or friends ,...though I do have a few online friends.
I am feeling a closeness to each of you thru reading ,..thank-you for this group and ,,,well I really need something like this.
It so helps to know I am not alone in this,,,which knew I wasnt but never knew how to find support or a support system.
Sorry for my caring on ,...but I have a lot.as I know we must all.
thx.,...

To all of you who were kind enough to reply to this post, please accept my sincere apologies for not following up. Shortly after I posted, my health took an unprecedented dive and I've spent the last six months bedridden and constantly in and out of hospitals.

Sadly, this means I had to take a leave of absence from my Masters program and have not had a chance to move forward with my Care for the Caregiver project. I do hope to resume it someday, and I will certainly keep you all in mind.

Wishing everyone the very best. Again, I'm so sorry for my absence!

BOY THIS POST IS SO OLD!!!!!