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Disappearing friends and family
Smarti
2 Posts

My husband was diagnosed with stage 4 pancreatic cancer one year ago. The cancer has spread to most of his major organs and vertebra. I am his only caregiver. Throughout this journey, I have noticed our friends and family have drifted away or, quite frankly, never showed up. I bounce between sadness and anger over this. At first, I thought once the pandemic measures eased, the isolation would ease but it has gotten worse as my husband‘s health declines. There are times when I do reach out and family members don’t seem to be able to cope when I try to talk about our situation. I feel they are struggling with our trying to accept that his cancer is terminal and their denial, in turn, makes me feel unheard. Or, when I try to encourage family and friends to come see him, they want us to come to them. Even when I explain a car ride causes him pain and we are basically housebound, I’m met with disbelief.

Has anyone else out there experienced this? How do you cope with it? I’m tired of trying to

6 Replies
Brighty
8498 Posts

@Smarti it's hard and so lonely. I'm so sorry you are going through this. I felt my friends disappear too. I think they could not handle such a thing. They were at different stages of their lives, starting out getting married, having kids, and my life was just caring for my fiance and cancer appointments. It was not something they wanted to talk about. It was terrifying for them. Some people just cant handle it. Even at work people kept their distance from me sometimes because they didnt know what to say to me. It's a shame, but I found once I did reach out, people were more receptive. Is there anyone you feel you can reach out to that will be receptive? Anyone that can just simply bring over a meal, or just take you out a bit to a movie , to cheer you up? Sometimes you have to be very specific about what you need. People sometimes do want to be there for you but just dont know how . Can you get respite care for a bit so you are able to take breaks for yourself? Do you have a social worker to talk to? What about family members to help? Try and focus on tbe people that ARE there for you both. There is bound to be someone. It's so hurtful when this happens but it happens more than we'd like it to. The people on here get it and will make you feel heard and less alone. Sending you hugs and hope you feel less alone now.


Cynthia Mac
3983 Posts
Hi, Smarti‍ I’m sorry to hear you’re going through this. A lot of people really don’t know what to say when faced with a friend who is terminally ill.

You need people around you now who have compassion for your situation. You’ve found them here, but that doesn’t get your husband visits with his family.

The best takeaways from Brighty‍ ’s post are
- be specific about your husband’s and your needs. If you need some respite from caregiving to do something for yourself, rather than say “I need a break”, say that “I have made a self-care appointment and if you could come on Tuesday from 2 to 5 to sit with hubby, I’d really appreciate it.” Rather than say, “I could use some help with meals” something along the line of “hubby is craving meatloaf/ whatever food, but his level of care is such that I just don’t have the energy to do that as well”
- try to focus on the people who ARE there for you. I sometimes tell people that when friends and family start “ghosting” you, it’s to make room for the wonderful people who are out there to step in and step up.
- look into volunteer respite services in your town. The Community Services Locator (which I think is csl.cancer.ca) might be able to find you a helping hands type of organization. I would also encourage you to reach out to your husband’s health care team for help

To the disbelievers in your world, encourage them to drop by and see your husband for themselves. Sometimes, we need to be blunt, even when it isn’t in our character to be so.

You are there for your husband. The people who aren’t there for him will have to deal with that in their own time. I know you won’t have any regrets about what you are doing. Stay the course.
ly22
2 Posts

@Smarti Thank you for posting. My husband was diagnosed with stage 4 pancreatic cancer just a month ago. We are just starting on this journey, facing this very difficult situation. I remembered reading that often friends and family don’t know how to help and that specific help should be requested. When I told people, I had had the time to reflect, and I asked them for specific help, for example come see me or us once every one or two weeks, or have us over before his chemo starts. So far it has worked. I will continue to do that.
You also mention that people don’t understand how much pain and discomfort your husband is in. I have had someone suggest an outing for him; after I explained that wasn’t possible and they didn’t understand, I simply started repeating “that is too painful for him” or “he can’t do that”. The person stopped insisting. I hope you will find the help and assistance you need

supersu
1297 Posts

@Smarti

isn't it amazing that when we need our people the most, they are not available.
unfortunately, you are not alone in this phenomenon.
people don't know what to say, or are afraid of facing their own fears surrounding death & dying so they stay away. I found it to be very surprising who stepped up, and even MORE surprising who never even acknowledged.

luckily there are communities such as this to find some support and comfort as you and your dear groom work thru his cancer story.

caregiving is lonely, exhausting and frankly thankless work. no way to sugar coat that one. @Brighty & @Cynthia Mac have given you some great insight based on their lived experience.

there are some great online supports for caregivers, or probably now that COVID is over even some face to face support groups meeting in your community?
if you are looking for a place to start: the Information Specialists are able to point you in the right direction. call them M-F at 1-888-939-3333.
or if you are the do it yourself type WellSpring is a great starting point.

let us know how things move along for you. I am glad that you posted. we are here for you. you are not alone in this community. never forget you are a superwoman doing a super job. thank YOU for stepping up.

hugs
su

#caregivingislonesome #spousecaregiver #pancreaticcancer #supporteachother #informationspecialists #wellspring

supersu
1297 Posts

@ly22


good morning ly22; great insight for @Smarti from someone walking the same road.
welcome to this community and thank you for your post. nothing like lived experience peer support!! #amiright.

I know I sound like a broken record, but just want to say: you are amazing.
caregiving is the hardest job I ever did, and from my experience I know that not many acknowledged that. in fact, somewhere along the way I have heard caregivers called the invisible patient.
so, let me be the first one to tell you today – THANK YOU.

when you are able, let us know how things are moving along for you and your newly diagnosed partner. we are here.

cheers/hugs
su

#caregiver #invisiblepatient #caregiversareANGELSonearth

law1
732 Posts

Welcome @Smarti and it is heartbreaking how some folks seem to disappear when times are rough. I am sorry to learn of the situation with you and your husband. There are very empathetic folks on this site, as I am sure you are reading in their replies.

Perhaps you may try a using free long distance Help Line as the trained persons on the other end are always open to discussions of any sort relating to cancer. 1-888-939-3333

I send you and your husband peaceful hugs.

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