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Emotionally supporting the main caregiver of a parent with cancer while living in another province, and dealing with the passing of the other parent
Hi, I am new to this site. My name is Sheila. I am looking to find resources for my brother to assist him as the only caregiver to our mom who has been diagnosed with Stage 4 Colon Cancer. He is having to assist and look after her, while working (mostly remotely right now) and we are still dealing with the loss of our Father Feb 2021. I live in another province. He is the only family member near our mother and is exhausted mentally and physically and is reluctant to join any support groups. I am hoping someone can provide me documentation or links to an anonymous online group he can ask question to or just vent. Any suggestions would be helpful. It is very hard for me to emotionally support him, living so far away and try to keep him positive - my sister, my brother and I are still struggling with all the loss and coming to terms with our mothers diagnosis.
Thank you in advance for any suggestions.
18 Replies
Allissaundre‍ Wecome to the site. I'm so glad that your brother has your support and that you are doing whatever you can to help him. He certainly seems to need some assistance. There is only so much that one person can do before they are no good to themselves let alone someone else. It's the old analogy of pouring water out of a pitcher. Eventually you run out of water.

There is a caregiver section of this site that you could look into but, like you said, he needs ti talk to someone for support.

https://action.cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

There are multiple ways of reaching out to someone.

Please keep us posted about how things are going. You are not aline. Remember to take care of yourself too.

cancertakesflight
HI and Thank you for the welcome and information. I have copied the link you supplied and sent it to my brother and highlighted the live chat part, in hopes he will reach out. We have always been a very private family and so it is very difficult for us and especially for him to reach out and ask for any help or share any information. I am hoping this discreet way will encourage him to do so.

I am looking through the posts and there are some with similar cancer diagoisis as my mother and some fo the positive outcomes - which I will share with my brother to give him some hope. I appreciate you sharing your experience. Best to you and yours.
Allissaundre‍ I hope things improve for you and your brother. I just found this link on the site and thought of you so I have put the link below. You may have already seen it.https://cancerconnection.ca/discussions/viewtopic/35/68266BTW, if you want me or anyone else to know that you want them to see a post type '@' followed by someone's user name. So if you want me to see something type @cancert and then select my name from the dropdown list. If it turns blue then youve done it right.

​​​​​​​cancertakesflight
@cancert
Well I do not think I am doing this correctly - I only seem to have option to reply and when I type @cancert, no drop down menu. :-(
But Yes, thank you, I found that page already and the link for the pdf, which I have downloaded and emailed to my brother.

I am thinking of sending this to my sister as well, but she is not the caregiver or in the area...
Thank you again. Your feedback is appreciated.
Allissaundre
Boby1511
454 Posts
Allissaundre
Hi there, sorry to read your mom's diagnosis.
In Ontario there is respite, PSWs (I think), that can come into your home and help out with stuff. Like bathing, light housework. I would think in AB there would be something similar. Most hospitals have some type of cancer coach or navigator, that can direct you to available resources in your area. You could call and enquire.
Sending best thoughts out to you and your family.
Allissaundre‍ I'm not quite sure why you didn't see the dropdown. Simetimes it can depend on what you are using. Sometimes when I am using my phone I have to scroll down on the page to find a name to select it.

As for whether or not someone is actually caring for the person directly. Many of the same emotional elements are the same so please share withyour sister. It is emotiinally challenging no matter how far away you are.

Also, as Boby1511‍ said, there may be resources who can come in to help. That's what is happening with my father-in-law and he doesn't have cancer.

cancertakesflight
@Boby1511
Hi and thank you for the information and our well wishes. I probably should have been more clear. But when I registered last night - I was overwhelmed as to where to start and what to disclose and what help to ask for and worry that she finds out I did this as it puts stresson my brother.

I live in Alberta, My mom, brother, sister live in Ontario. My brother is the only one close enough to help out so he has temporarily taken up residence at my mom's house, to try to look after her and work remotely and keep his own place going in another city.

She has a home care nurse come in to change her chemo diffuser bottle, and assist with changing the ileostomy bag. But that is all she will allow in the house as she is very private and will not except help from outside. As she is of sound mind, my brother has no power to make decisions to help her in anyway except drive her to appointments, some in another city, feed her, look after the chores and still do his job.

She has not, will not, give power of attorney to him to help her doing anything financially or medically (get assistance to come into the house). Part of this I think is she is still reeling from the passing of our father, (her husband) in Feb 2021, and not being able to deal with that paperwork - as there neither of them made a will and most things are in my father's name. She is in denial at some points that he is gone or that her cancer is as serious as it is and that our father is really not coming back home - as she did not get to say goodbye, she just got out of surgery when he went in and complications arose and she could not get there in time.

She has not spoken to me or my sister since she told us of our fathers passing and only relies on my brother to help her. She gets very upset if she thinks anyone knows what is going on with her outside of her doctor and my brother which puts additional stress on him since he is trying to keep my sister and I in the loop without her knowing and getting upset with him. My brother is exhausted. I am trying to get him to reach out for help - at least emotionally and try to do self care - but he feels guilty if he takes time for himself because he is worried that something will happen to her if he goes out. I think we are all suffering from the thoughts of - Would it it be better for her if this was all over so she does not have pain. We are not too hopeful that her chemo treatment will work - They cannot operate on her colon or liver until the cancer has shrunk. We are all still grieving for our father and not being able to say goodbye. I myself could not attend the service and my live stream of the service crashed.

Basically I am at a loss as to what else to tell my brother or how to help him. He discreetly contacts me to vent, or ask how to do something, convince mom to take better care of her self and to try to resolve paper work from my dad she does not get into financial difficulty. I am tying to be so strong for him but.... well I guess this is why I am rambling here... why I can't see past my own worries to worry about others and why I registered for help.

Thank you again for the advise - I will tell my brother to see if he can get a PSW in to help without her permission. Maybe this will give him a break. Ok - I really must get my own house work done. Have a great day.
Boby1511
454 Posts
Allissaundre
Afternoon,
Have they signed your mom up for palliative care? You may gain access to some services quicker this way.
Respite care can be relatively non-invasive. Not sure if you could sign up without her consent, being of sound mind.
You may also be able to get prepared food delivered depending on where she lives.
I have no idea what a chemo diffuser bottle is.
You can get the ileostomy bag assistance for longer than prescribed if you tell them you still need assistance.
This does sound very stressful for you all.
Wishing you the best.
Whitelilies
1073 Posts
@Allissaundre
Hi Sheila
I am sorry to hear of the loss of your father......as well as the diagnosis of your mom.
It is truly difficult to support from afar......
May I share........if you OR your brother could: Please look at:

www.CCRAN.org

reach either Filomena....or Frank P.

Both are skilled and kind and will give you, your brother all the support needed PLUS insight into Stage 4; they know SO much about meds, clinical trials, side effects, supports groups (they have them too, 1 sunday afternoon per month)...diets...and more!
Contact number on the website....tollfree number provided as well.....They held my hand, when I needed them most.

Please reach Filomena. You/your brother, will be supported.

Regards
Whitelilies
cancertakesflight‍ - I got it now. Thank you for the info. And I definitely she what Boby1511 is saying.
I am sorry that your father-in-law is going through the challenge as well.

Boby1511‍ - Thank you for the info on PSW - I did forward this information to my brother this weekend. We have discussed this before however I am unsure if has been able to convince mom to allow the help.
Boby1511‍ - Thanks you for the information - I provided this information also to my brother - At this point I know that he received some brochures on palliative care but I don't know if this has been set up by hospital or home care nurse or not. My brother is overwhelmed trying to keep us informed and I know he has mentioned palliative care in passing but not in detail. I also let him know about the possible food delivery options - however he will need to find out if they will do that since he is living there taking care of her right now. My brother - I do not think is ready to think of respite care yet. He is still too raw from our dads passing and while he knows on some level that mom might not be cured, he is holding out some hope. The additional time to have assistance with the ileostomy bag is good info. Thank you for your well wishes.
Whitelilies‍ - Thank you for this link. I have briefly look at the site this morning and already forwarded the link and info you provided to my brother. Hopefully he will get a chance to look at it today between work and mom. At least I am trying to get him to. I will definitely look into it and reaching out to Filomena and or Frank P. AT the very least If I can get the info and mental support then I can provided better information and support to my brother. I will also provide some links for my sister.
I truly appreciate the info and the well wishes and information and I hope you are well.
cancertakesflightBoby1511Whitelilies

Thank you all for the information and support you have already provided. I am going through waves of when I want to face, acknowledge and read the information, therefore I have not read this page daily. And I want to wish all of you well in all that you have experience and are experiencing - in the event I do not mention it much later - I seem to have a one track mind at the moment but I am conscious of the fact that I am not the only one going through this, something similar, etc - so thank you all and I truly wish the best for all of you.
Trillium
1228 Posts
Allissaundre‍ I’m so sorry you are all in this difficult place right now with the loss of your dad and your moms illness. We are here with you and for you.

There are some private online groups with Wellsprings at link below you would all benefit from as caregivers. You are all caregivers even though your brother is the only one your mom is allowing to help her. Perhaps if your brother is direct with your mom by telling her he cant help all on his own and needs to have people helping him help her? If it has not been discussed this way its worth a try.

My sons cancer clinic had a social worker that was available
for both family members snd the patient. This person would be really helpful for your brother to get help in place for both of them.

Calling a local hospice
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
to see what they can offer would also be helpful. They provide in home services and are very good at what they do and can provide support for the whole family. They can help sort all of these issues out and support you all. The link above can take you to whats available in your area.


https://wellspring.ca/online-programs/programs/all-programs/


You are welcome to just talk it out here all you want as well.
My thoughts are with you during this difficult time.

Warm hugs
Trillium‍ Thank you for your warm support and information. I have clicked on the links and copied and pasted to my brother and have set them up to read further. I have also passed on your advice to my brother about having that direct conversation with mom - unfortunately he did try this not to long ago and she basically just told him to leave then. This hurts him so much. He feels like a glorified gopher, taxi driver, cook, house keeper. When he does try to have an open conversation with her - he says she just looks at him and walks away. She doesn't seem to understand that he can't just drop everything to take her plant shopping during the day - he works virtually and for every hour he is away to take her to treatments, doctors, etc, he needs to make up as his work is deadline sensitive.

He is more than willing to take her on the weekend - but feels bad he can't during the week - if he doesn't work - then no paycheck. Yes he has said this to her too. He does not mind being there for her - just that he needs to balance the schedule to cover everything. She just says to him - sorry to be such a burden on you. Some times he thinks she does understand but is being stubborn and wants it her way as then she has control over something since she can't control this cancer outcome.

He can't get her to stop smoking - she just says the doctor knows (apparently she takes to puffs puts it out, comes back later, repeats, etc al day.- And she is just focused on when the ileostomy can be reversed and she can get rid of the bag because it is uncomfortable and she thinks people can see it. And now that she is loosing her hair she is more upset and all the hats, information we give her or that letting her know it will grow back, is not working.

e can't get her to focus on any paperwork to fix the bills, etc. and he has no legal right to step in and fix the paperwork. She just walks away. He is at a loss. I urge him constantly to sign up for one of the support groups on line, this support group, etc but he just can't seem to take that step. He feels bad as part of him just wants this to be over and he go home to his life but that is just exhaustion talking. This makes him feel more guilty.

Unfortunately of all 3 of us children - he is the one being the main caregiver and has not had any adequate time to grief our father - he had to help coordinate that service and get our mother to agree to certain things as only she could give permission to do certain things for our father. He still feels that he could have done more for our father - now that we know that father's illness was very similar to our mom's but he hid it all from us so well. He feels guilty as he was the one who able to see them the most and felt if he had known - he could have prevented the pain dad went through or gotten him medical help so that he would be with us still. He is trying so hard to make everything work and I keep urging him to seek emotional help, take a walk, look after himself. If all I can do is provide the links and suggestions everyone has provided me from this group - then at least he has some information.

Yes I am rambling again - seems like when I open up on this board - all the emotion, frustration, etc comes pouring out - and I know this is not about me but him and her. I will definitely try to sign up for some of the counselling groups to try to deal with these emotions. But I am still greatful for the advice and support from all of you on this site.

I do look at some of the other threads and have gleaned some good information and advice from them as well and wish everyone the best.

When I read your post - it made me cry - to see the support for me a virtual stranger is very moving. And I thank you.
Trillium
1228 Posts
Allissaundre‍ - many of us here have been in a similar life chaos and it is a very hard place to be. We cry an ocean of tears so make sure you drink plenty of fluids and eat as best you can.

The only way through for me was to get as much professional help on board as soon as possible before you all burn out.

Talk as much as you want here but also take a break from reading and thinking about it all so you can recharge and fill your cup. This also helped me by allowing me to break in down in chunks so I could deal with the most important things first and giving me some space to breathe.

My parents had all 3 of us siblings as power of attorneys long before it was needed so that made things much easier but it was very difficult when so many things happened at the same time...,

Hugs
Trillium‍ Thank you Trillium for the advice - I know I am not alone and appreciate the sharing of your experiences with me. It does help to see what choices, paths, options, members of this site have taken. Yes I definitely need to hydrate a lot and keep a full box of Kleenex around.

I am trying to set up some professional counselling - I only wish I could get my brother to do that - and take his break. I think I will suggest to my brother to also try to break it down into realistic and most important chunks to deal with - let the rest just roll away from him for now.

My brother approached both my parents when we found out about how serious ill Dad was and Mom's illnesses was just being diagonised - December - and discussed a will and or power of attorney - health or financial - so he could help make the decisions when necessary - unfortunately they both said no will or power of attorney was needed and now everything is all messed up as most things were in dads name. When my brother approached my mother about a power of attorney - he explained it was not to take anything away (control, power, money) but to help get the paperwork for dad under control, help ensure she had income coming in still, and to help make the hard medical decisions. She said she doss not like the power of attorney and won't do it and won't do up a will. I think a will makes it more final that she may not survive this cancer.

My sister and I are the lucky ones - we are farther away and do not have to deal with all this directly - giving us the room to breath -but it puts so much stress on him. And you are right - everything happened at one time - all just before Christmas and barely 2 months later - we lost dad. I am not sure if we had more time between each event how much lighter the load would be on my brother - but I am thinking it would be.

Once again thank for sharing your experiences and I will continue to share with my brother and try to help him get more emotional help.
All the best.

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