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Caring for spouse in pallative care
Lilac1
4 Posts
I am looking for coping skills to help me care and support my husband who is in pallative care. I am having all kinds of emotions and want to hear how others have coped. Thanks
14 Replies
Brighty
8442 Posts

@Lilac1. I'm truly sorry you are going through this. Palliative care is incredible at giving patients and caregivers high quality care, and managing pain. Reach out to any of the palliative care nurses or doctors and they will support you 100%. , whatever you need. They also usually have counseling services available there too for caregivers. I've read posts on here where caregivers try make the palliative care room an uplifting atmosphere. They bring in tbe patients favourite music, books, tell stories, jokes, and share favourite memories……bring in favourite foods……all those kind of things. Perhaps @WestCoastSailor can tell you about his experience, and others will join in as well.

Lilac1
4 Posts

My husband is at home and wants to pass away at home if possble. He has a dr, nurse and social worker but there is no counselling for me. He is getting great care but I feel like I need more support

Brighty
8442 Posts

@Lilac1 the palliative care team, whether home or at the hospital should have the resources.. ask next time you see them. Are you able to talk to that same social worker?if not, they can probably provide you with another one. Just let them know what you need.

@Lilac1

Though my wife wanted to die at home we were unable to make those arrangements so she went to hospice. My experience there was quite wonderful. The social worker there followed up with me after my wife died serveral times. I made contact with a grief support group and was to get some support from them.

You will need to speak up. Caregivers can often be overlooked as the team focuses on the patient. Have they talked to you about what to expect towards the end of life? Given you numbers to call, etc.?

Angus

Kuching
375 Posts

@Lilac1 I hear you! My husband had pancreatic cancer, and I managed to keep him at home until his final two weeks, because that’s what he wanted. We had lots of support - nurses, therapists, social worker - but they mainly just told me what to do for him. Like give him pain meds every two hours, turn him over every hour…..I would feel angry that they didn’t seem to realize that I needed some sleep occasionally, then feel guilty about being selfish when he was dying. And I had just been diagnosed with stage 4 lung cancer myself, but everyone just seemed to ignore that, because I wasn’t visibly suffering. Sometimes I felt like saying “hey, I’m dying too, you know!”

You will remember this time for the rest of your life. Try and get some happy memories in with the sad ones. When I think about it now (2 years later), I try to only remember the times when my husband was sitting by the wood stove with a cup of tea, and actually seemed happy for a little while. The rest of the time he was pretty much in a morphine haze.

Also, take some time for yourself, and don’t feel guilty about it. I had a volunteer respite worker who came and sat with him for a few hours occasionally so I could at least go for a walk. It saved my sanity.

And don’t be afraid to ask friends and neighbours for help - most people want to help, they just don’t know what to do. Give them something practical to do, like fetching groceries, or sitting with him while you take a break. Most people will be glad to do it.

This is a hard time for both of you. Hang in there. We are here to help.

Cynthia Mac
3876 Posts
Lilac1‍ , I gave care to my father, who passed away in hospital - it was in June 2020, so options were very limited. We were fortunate we got to be with him during his last 8 days, even though he never regained consciousness. I was fortunate in that three of us took turns being by his side, so it wasn’t all on me, and, he had 24 hour nursing care, too, stressed and all as they were due to their working conditions.

I can’t stress enough that you need to get some care for yourself. As others have mentioned, reach out to your husband’s palliative care team, or to the social worker at your local cancer centre. Anther option is your own GP. If you’re in Ontario, there’s a caregiving organization, but I really don’t know if they offer direct programs.

If you have any type of homecare, take that opportunity to step out and do something for yourself, whether it’s sitting in the car with a coffee looking out at the nearest lake (crying optional) (or pointing the car around to watch the kids at the playground area), or meandering through the mall for a bit to look at the window displays - maybe pick up a book or nibble on something from the food court.

A very good friend of mine’s mom also had lung cancer, and when she was end-stage, she went into hospice care. I can echo WestCoastSailor‍’s comments about the hospice experience. The staff there are exceptional people, and there are excellent resources to be found through them, too.

I also agree with what Kuching‍ said about “making memories,” and for that, I’ll tag CentralAB‍ Into this conversation. He looked after his wife at end stage, and he did his utmost to make her last days (and his with her) memorable. I know you’re feeling overwhelmed right now, but if you can find joy in choosing a few flowers for the breakfast table, or setting up some of your favourite dance tunes on the stereo, you might both enjoy a few moments that take you away from the anxiety of your current situation. As Kuching said, those types of moments will help you through down the road. One of my favourite last memories with my Dad was when I started to sing a CCR song to him in hospital, and I swear I saw his mouth move toward a smile.

If there’s anything specific you need, just ask. One of us will try and get you to the right place for the answer.
JenG
110 Posts

@Lilac1 It's an extremely hard thing that you are doing. I did it for my mom and had help from one brother (and his family, who lived nearby), had to block another brother because he didn't understand the ‘care’ in caregiving. I did NOT ask for enough help from palliative care/home care and I AM experiencing some heavy burnout.

So please keep advocating for yourself for the therapy and counselling. Please do get respite care. Tell your husband's social worker that you need help and have them do the work for you if you can. If they are no help, do you have services offered through your work? Or health care plan? Or family doctor? Ask, ask, ask.

And I understand that you may not have the energy for that. It's easier to advocate for someone else than for ourselves, but please try. Or ask a friend or family member to do it on your behalf? As someone already said, people do want to help but never know how and it's usually up to the already-dead-dog-tired caregiver to coordinate that too!!

You will remember this forever. And it won't always be pleasant to say the least. You are giving your husband a great gift to be able to die at home. It's okay for you to change your mind if it's not working out. You are a part of this too.

Big hugs sent your way. I'm so sorry you have to go through this.

Jen

Lilac1
4 Posts

Thank you so much for sharing your experience. I also was diagnosed with uterine csncer in December, had surgery in January and just finished 25 radiation treatments. We have been getting some meals and have a good support team. My husband is still having chemo which is slowing tumour growth. I worry about what is coming and how I will cope. I also have to support our 2 adult sons who are having difficulty with their dad's pallative condition

CentralAB
1246 Posts

Hello @Lilac1 It sounds like you have been dealing with an enormous bunch of challenges regarding yours and your loved one's health. I am glad tho that you are here. During the five years I cared for my late wife at home, I had many similar challenges. I had some pressing healtchcare needs the last two years of our time together and it wasnt easy to ignore my own health in order to look after my wife. If we love someone, we feel we need to do whats best at the time. But I did run out of steam a few times and the people here were a great resource to vent, or to get advice.

Here, you can get information about cancer and the many issues involved in looking after your loved one. There are some people here who both have cancer themselves, yet are still caring for loved ones.

Without fail, Id have to say the best thing I was able to do during those hardest times was to look after myself, so that I could just get through it. Times I did not do that always made it all worse.

What do you think your biggest challenge is right now? We want to be here for you.

@Lilac1 not much to add in the way of help as others have posted some good ideas. I wasn’t really offered any help through the hospital (Steven has oodles which is great!). We went to grief counseling which I found incredibly helpful. Additionally I reached out to a local widows group to prep myself for what the Drs tell us will inevitably come. I also have what I call a mentor wife. A woman who was a complete stranger to me whose husband passed from cancer. We don’t chat often and have never met in person but I’ve had some of my most open and honest fear conversations with her as she 100% understands what I’m going through. Please know I’m thinking of you and are willing and ready to help when you need us 💛

@Lilac1 - just checking in to see how you are doing?

Thinking of you

Lianne

Lilac1
4 Posts

I am doing ok. I am gradually finding more pallative care support. I am also attending some caregiver support groups through Wellspring.

Thanks for checkin in

CentralAB
1246 Posts

Lilac1:

I am doing ok. I am gradually finding more pallative care support. I am also attending some caregiver support groups through Wellspring.

Thanks for checkin in

This is wonderful news @Lilac1 How is your husband doing? The caregiver support groups is a very good choice. Its good to join such groups with people who are knowledgeable. We will also be here for you anytime you need. Thank you for keeping in touch.

@Lilac1

Happy to hear you have found these different kinds of support. It is so important and hopefully will relieve some of the heaviness that goes along with being a caregiver.

Continue to reach out there and here when you need it.

Take care

Lianne

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