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Alone to support my husband
Cin
2 Posts
My husband has pancreatic cancer. Due to finances, I had no choice but to take a job in the city. I am finding looking after him to make sure he is getting proper nutrition, giving him needles every day to prevent blood clots and getting him to appointments for treatments and dr visits is very overwhelming. I get a lot of people saying they care but it is all lip service. I sometimes get upset and it upsets my poor husband. I feel like I am coming apart at the seams..I don't know where to turn. I feel scared and alone.
13 Replies
Whitelilies
1667 Posts

@Cin Hello…..thank you for sharing where you husband is right now….and yourself as well. I am so sorry, to hear of his diagnosis, and of your challenges, that are all very real.

Calling Canadian Cancer Society main # 1-833-939-3333 will help….they are full of resources, in every Province.

Please reach out to the Oncology Social Worker, at your husband's hospital….they will give you an appt (patients and their loved ones)….in person/phone, what ever is best for you….you can talk with them; they understand; they will also, have resources to share with you….perhaps they can find a home care/PSW , who can help, you, with daily care of your husband, and you get a respite, even for a short time.

Please find the Patient-Navigator, at your husband's Hospital….they are actually a Nurse, whose sole role, is to support the patient/loved ones….ie questions are answered…they can explain medical issues….they can support too!! They too, are a wealth of knowledge, contacts, resources.

“Lip Service”…..Yes, I too, faced/heard “those words'……Well, there is one more option…..Reach Them! Yes….call…...email…say ”I would really appreciate it, if you could pick up a few groceries items, I am exhausted…..give the list". Some folks are “eager” to help…..but do not really know, what exactly is needed; this way; they will know.

We are all here, to support you….your husband.

Lean On Us Cin…….

Regards

Whitelilies

#CaregiverBurnout

Whitelilies
1667 Posts

@Cin Hello……Please meet @Brighty @Cynthia Mac Thank you both so much, if you could share your care giving ideas, experiences, here, to support our new member….giving care to her husband, and is in need of support……much appreciation.

Regards

Whitelilies

Whitelilies
1667 Posts

@Cin My apologies, I gave you an incorrect toll free number.

Please reach 1-888-939-3333

Brighty
7731 Posts

@Cin I'm not sure why I can not tag your name. I totally get you….when I looked after my fiance who had stage 4 esophageal cancer everyone buggered off and I was left alone to do everything. I completely fell apart. It was my mom who spoke up on my behalf and screamed at his family to step up . Not just step up, but she told them EXACTLY what they were to do!!! You go mom!!!! I am a very passive person by nature…but in this case, it does not pay to be passive. So my mom told his family in no uncertain terms, this one will drive to treatment this day, this one will drive to treatment that day…this one does this and this one does that. Sometimes you have to just be bold and tell others exactly what you need. They say they care, well, they can drop off some groceries , they can drop off meals, they can split the driving with you, they can stay with your husband while you go out and take breaks, and care for your needs. People will be happy to help, but sometimes you just have to throw pride out the window and ask. I was too shy to to proud to ask, but my mom was not going to stand for this . It did me no good to be shy . I was falling apart and was no good to him anyway. I also found it so helpful to talk my own social worker and the oncology social worker. The cancer center social worker will also have coping strategies for you, as well as resources for you…such as home care, palliative care or whatever you happen to need to make things easier on you both. Anyway please don't be shy to reach out….. people probably want to help but dont know what you need or how deeply overwhelmed you feel. You can also reach out to religious organizations if you belong to a church or community center….I find they will rally around members and send people to help out. You are not alone. Glad you reached out here. We get it and we will help you.

Boby1511
720 Posts

@Cin

hi there,

Ontario has a free ride service to oncology appts. you pay a one time fee of $100 for the year.

There is likely something similar where you are.
check with the hospital social services person. They should be able to direct you to possible free services.

sending you best wishes during this difficult time.

Brighty
7731 Posts

@Cin yes, thank you @Boby1511 @! I do believe the service is called “Wheels of Hope".. Check with the cancer info line and they will tell you more about it. 1888 939 3333.

MCoaster
683 Posts

Welcome @Cin

I am so sorry about your husband's diagnosis of #Pancreaticcancer. Caring for a loved with cancer is so hard. Cancer is not only a physical issue which affects the person diagnosed but also an emotional one for them and those who care for them.

You have joined a pretty special group here and I am sure many others will chime in with support but I have a few suggestions. It seems as if you have very little support from the system and family and friends. Have you spoken to your husband's doctors about having daily visits from home care nurses? There should also be counsellors available to you through the cancer centre and they may also have suggestions to offer about your financial situation.

We here are certainly here for you as we have all been touched by cancer in one way or another. When I was diagnosed with breast cancer I also felt I had found a very safe to be as others really got how I was feeling without knowing who I was. It is sometimes easier to open up without having to worry about the impact you may have on your nearest and dearest.

Warm hugs.

MCoaster

Cynthia Mac
3417 Posts

Hi, @Cin caregiving can be a lonely business.

Things I found that helped me was to be specific in my needs. This might require sitting down and making some lists so you can be ready in case someone makes an offer that is sincere.

To illustrate, if you need some help with meals because you’re cooking one thing for him and another meal for yourself, if someone asks, you can say, “You know, he really needs some [nutrition]. If you could do a batch of [pureed carrots, for example], I can freeze into smaller containers to last him a week or two.”

Another possible solution for you would be to check with your local hospital. My Dad bought frozen meals from their kitchen, and then he would heat them up on days when he didn’t feel like cooking. They were nutritionally balanced and quite reasonably priced.

Are you able to carve out any time for self care for you? It’s important that you have something - even if it’s only a half hour a week, that you can use to have a bath, read a book, or do something that’s just for you.

Kuching
345 Posts

Dear @Cin, you can’t possibly do this alone, especially when you are working at the same time. I agree with all Whitelilies’ suggestions, especially getting a social worker in your corner. They will know what resources are available locally. I am in rural Ontario, so it may be a bit different, but when I was looking after my husband, we had a Nurse Practitioner, a Nurse, and a social worker who all came to the house on a regular basis. We also had visits from a dietician, an occupational therapist, a physiotherapist, and a volunteer respite person (to give me a break). These were all provided by the LHIN. And the local Community Home Support supplied drivers to and from all medical appointments. Help is out there, and your social worker should be able to organize it all for you.

i also agree with Whitelilies, that you should just flat out ask people to do practical stuff - get groceries, provide rides, or just sit with him while you get some down time. A lot of people really do want to help, they just don’t know what to do.

Don’t burn yourself out - that won’t help either of you!

Wishing you all the best from Ontario.

CentralAB
1119 Posts
Hello Cin‍ I am sorry to hear of your husbands illness and your struggles in care giving. I lost my wife to cancer a year or so ago. I was her caregiver for 5 years. As I read your posts, I recognized some similarities in my experience. The isolation was very bad for the last while, Sometimes, with the covid realities and events, it was impossible to get respite of any kind. I am not sure how much strength and resilience you have, but I do know that care givng does not write us a blank check, so to speak, and sooner or later, we will burn out if we do not find ways to look after ourselves a bit as well. You have received some really good responses here so far, and I don't recall who said it to you but someone mentioned just asking people to do some things for you if they are not coming around. In my experience, I asked one of our paid caregivers to drop off some groceries a few times, other times I would ask friend or family to just sit with her for a while, so I could go out. I would time it with her pain medications so that I knew she would be snoozing while I was gone.There were times when I had someone come over and sit with her for 2 hours, and I wouldn't even go anywhere. I just went and laid down myself. It all depends on what you need. I hope you will continue to search for a little balance and respite for your situation. Please keep in touch as you are able. We will be here for you.

@Cin

It's not often a post brings tears to my eyes these days. Call me jaded or cynical or what ever. But your situation just sounds flat out hard. My wife died of pancreatic cancer three years ago so I know whereof you speak when it comes to challenges of being a care giver.

The last real meal she ate was from a friend who was a fisherman in Alaska for years. When he brought it over I assumed that his wife had made it and he was just delivering it. It was poached halibut with potatoes and vegetables. Sitting, eating that meal together, is one of my fondest memories of the gentle time before she landed in hospital. He had made it out of love.

Like many have related, asking for specific help gives people the freedom to accept or say no. And in my case when they said no, they often asked if there was something else they could do. That's how the meal I mentioned happened. I had asked for some help moving some furniture with his truck.

Those who know me well, know that I'm a stubborn Scot whose mantra is “Do it myself.” Cancer has taught me to ask for help. If people say no, that's on them. I can't take it as rejection. But I can't do this alone.

Know that we care for you and hope that things work out.

Angus

Cin
2 Posts
I can't thank you all enough for reaching out to offer support.
It makes me feel that I am not so alone.

❤️

@Cin - continue to reach out here as you need. Even if you just need to vent, or an “ear”. We are here to support you as best you can.

Thinking of you

Lianne

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