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Telling friends about being a caregiver
LVL999
11 Posts
I’ve been caring for my dad for 4 months now. He was diagnosed stage 4 stomach cancer and is currently going through chemo every 2 weeks.

since his diagnosis, I’ve been spending most of my time with family. the first couple months, I declined all invites from friends, using Covid as an excuse.

But dad felt bad that I wasn’t going out, so I started seeing people in small groups. When Covid was worse, my friends were also taking caution, so I felt safer meeting them. But now that all regulations have been lifted, friends are gathering in bigger groups and no masks.

I’m conflicted now. I want to go out and meet my big group of friends, share meals, and do activities together, but at the same time I feel like I shouldn’t because I don’t want to be bringing sickness to the home.

I haven’t told anyone that I am now living with an immunocompromised person. I’m starting to feel a need to tell my friends because I can’t always make excuses to decline their invites.

how are you guys handling your social life as a caregiver?
7 Replies
Brighty
8591 Posts

@LVL999 thank you for reaching out and for being such a wonderful caregiver to your dad! I found that being a caregiver was very isolating, and it was important to take care of myself too, and keep up my friendships . I didn't have covid in the mix though, so didnt have this extra issue to worry about. It might help you feel less isolated to meet up with friends, but perhaps do it more cautiously. Like not going in a huge group, meeting people outdoors where it's more safe etc. I think I would suggest being honest with your friends and tell them whsts going on. Not only for the reason of running out of excuses, but for the simple reason you could use their support. You will be surprised how understanding they might be, how helpful it will be to unburden yourself of this load you are carrying around. They might have other suggestions on how you can meet up with them in a safer manner…..like I said…outdoor activities.. the weather is great now!!!!!! And they also might even find little ways to help you and your family…..for example dropping meal off. So if you feel comfortable, i would bite the bullet and reach out. I get that some people are very private , but personally I found a support system vital to getting through such a tough time. You dont have to be alone . How are you coping and how is your dad managing chemo? Wishing you the best.


Cynthia Mac
4127 Posts

LVL999‍ , I share your concern about going out into large groups, particularly indoors with many people in close quarters - even if all those people are friends. I still haven’t been to a concert or indoor fibre festival, and I’m at least a year out from hopping onto a plane or cruise ship!

I was a caregiver, too, into the very scary first part of the pandemic. As Brighty‍ says, caregiving can be isolating, at the best of times.

You really have to do what is right for you. I agree that you really don’t want to be bringing sickness into the home. It’s very clear that you care very much for your Dad, and as such, I think I know how you’d feel if you thought your dad became ill because you were at a house party.

I had been on a trip right at the start of the pandemic and quarantined an extra week over the 21 days recommended for that very reason. Of course, we know more about the disease now, but still, I know people who have healthy, elderly relatives, and they still wear their mask all day when they have to be in the office, and take all the precautions you’ve mentioned, and more. Even now, I’m hearing of people I know having Covid for a second time. Then I had this happen to me on the weekend: a woman approached me on a street corner to hand me a anti-vaxxing pamphlet. She was not wearing a mask and was standing less than 3’ away. I told her to step back! Like, are you kidding me!

Again, you have to do what is right for you, but I will say that your idea about confiding in at least some of your friends to explain why you’re reluctant to be in large groups would certainly be something I’d be ready to do at this point. I’ve learned that some people will understand completely, and some will not, though, so plan accordingly.

I hope you can find a good balance in this situation. Please let us know how it goes.

Smarti
10 Posts

@LVL999
The pandemic has definitely added a new challenge. As per my husband‘s wishes, I didn’t share his diagnosis with our friends. Eventually, he realized his request isolated me from my natural support group and 6 months after his initial diagnosis, I let friends know about his cancer. I also shared that he was immunocompromised and we needed to be careful re Covid. Our friends surprised me, even the most vocal about masking etc immediately put my husbands health first when planning a visit. Everyone was very open to meeting on the patio for a chat and honest if they felt they should delay a visit.
They understand that I’m not up to going out to a big gathering or dinner but we’ve found other ways to get together. Even sharing a coffee over FaceTime helps.

Cynthia Mac
4127 Posts

@Smarti Yes, if there’s one piece of incredibly good timing on the part of the Universe, it’s that Zoom, FaceTime, What’sapp etc., all happened to come along at the same time as Covid. What a blessing!

LVL999
11 Posts

Thanks @Brighty @Cynthia Mac and @Smarti for your kind words. My dad has been doing exceptionally well, with minor side effects. He looks so healthy, which is why I had that split second where I thought it would be okay for me to go out with a large group of people or go to concerts.

Today is a tough day. I made commitments before and after his diagnosis that I cancelled today. There was literally no good excuse to cancel them, so I had to tell my friends that my dad is ill. I didn't tell them he has cancer or that he's going through palliative chemo - just that he is immunocompromised and going through treatment. I'm still not comfortable sharing that much information with people. Maybe I'm worried I'll be pitied, or maybe I'm worried that people will make stupid comments that would make me feel terrible. It's also just very hard for me to share these emotions because I'd hate to worry people.. it's still a confusing time for me - I really don't know what I want!!

I had to tell three of my close friends today, they were very generous and offered words of comfort, and offered to gather in smaller groups. I know it will be hard for them to comment further as I didn't give them the details, but it was relieving to see that they weren't asking further about the situation. It will take some time for me to talk about it without breaking down.

I do feel so much better cancelling all these house parties and large gatherings. I'm in my 20s and friends meant a world (FOMO took a big part) before my dad's diagnosis. But now, family is priority. Your comments gave me a chance to think about what is more important to me now, and also gave me the courage to tell people that my life is now different than it used to be. Thank you

Cynthia Mac
4127 Posts

@LVL999 Being where I am today, there are a LOT of things I would share with my 20-year-old self. Here are two:

As you point out, now is a high-priority time for family. Your really good friends - the ones worth keeping through your 40s and beyond - will be there when you are able to be with them again. This is part of the ebb and flow of having people in our lives.

Having lost both parents within a 3 year window, I know in my heart for absolute certain that you will have no regrets about any of the minutes and hours you spend with your parents, no matter how long or short a time you'll have with them, and no matter how joyful or painful the moments.

Sending love.

Brighty
8591 Posts

@LVL999
Thank you for swinging back and responding. I'm glad to hear your dad is doing well with treatment with only minor side effects. …………..you did the right thing by cancelling those particular plans and letting your friends know what ever you are comfortable with sharing. when and if you feel comfortable sharing, you will share more, if and when the time is right. If you are worried that you will be pitied or have insensitive comments made to you to make you feel bad……..well, we have a thread , actually several threads about that here…….all the insensitive comments people have made to them. Sometimes it happens, but it can happen with any life situation. There are going to always be ‘those people’. The upside of telling others is that your true friends will support you through and you will feel less alone. And already 3 of your close friends showed how much they care for you, as well as respected your privacy. That must have been such a relief for you! And if you worry about breaking down………………………don't worry. It's OK to break down. I could have filled up an ocean with my break downs and tears. Sometimes it's just ok to let it all out and have a good cry. I became the ‘sunglasses’ lady at work during the year my fiance was ill. I could not hold in my feelings at all. I broke down EVERYWHERE. My eyes were so swollen I wore sunglasses indoors to hide them. So be it. People understood and gave me the ‘time outs’ and whatever moments I needed to collect myself in the bathroom . If you don't feel comfortable telling those you know about what's happening, you might want to talk to a councellor. Someone who is impartial…. someone who will not make the comments you fear, and someone you won't have to worry about judging you, pitying you or anything of the sort. You might want to try the social worker at the hospital your dad is being treated at. Or for further resources, the cancer info line at 1888 939 3333. They are wonderful and will talk to you as long as you need. I'm so glad that the responses here gave you a chance to think about your priorities and muster up the courage to be able to open up to others. Keep it up!!!

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