my heart goes out to both of you.

My sister died recently, and while her health issues were quite different from your wife's, she did have a number of them. She had long had DNR orders, and the most recent hospitalizations she had a wrist band that had AND, for A Natural Death. She was only 70, far too young, but she was ready to go.

The closest thing to advice I'm going to offer is that if caring for her becomes too much, do get help. Home nurse, hospital, nursing home, hospice, whatever makes the most sense.

I will also add that in the past two months of her life my sister had four separate hospital admissions, and the staff at that hospital were entirely wonderful. It was the fourth one, that didn't initially seem too serious that turned out to be the final one. After two days she took an extreme turn for the worst and it was over rather quickly.

To me, it's a good thing to know the end is near, as it is for your wife. You clearly feel the same way.

My sympathies on the diagnosis. I absolutely respect each person's choice as to how their lives should end.

Which province do you reside in? Hopefully palliative care is not stretched to the limits where you are. Have you looked into a local hospice organization where you live? Having a volunteer stop by once or twice a week would give you an opportunity to get out and stretch your legs or collect your thoughts. This could be a long haul not only for your wife, but for you as well. As much as you share love, it will be demanding on you to be providing increasing care over the weeks and months ahead. You should consider your own well-being too, so that your support for your wife is optimal.

Will she be on morphine? Be aware of the common constipation issues associated with long-term use. I mention this not a deterrent, just something to be prepared for. There will be a great deal of powdered fiber drinks and enemas to counter the constipating effects of the morphine.

I wish you great strength, but remember to allow yourself to feel a range of emotions and not to consider yourself "weak" or a "letdown" if you are having trouble coping during stretches. Be gentle, not only with your wife, but with yourself.

My husband died of cancer last July nearly two years after the first signs of the disease. Dying was a challenge for him and for me as his caregiver.
I don't know if Canada has Hospice. It's very helpful in the U.S. during the dying process. A person is eligible for this service if the expected life expectancy is 6 months or less.
The caregiver has full responsibility for the dying person and must be present when Hospice people come to the house. But Hospice will send out equipment like a hospital bed, a bedside tray and toilet, and a walker for the duration. It will also send out an aide to bathe the dying person (while the caregiver is present) two or three times a week. Hospice provides a nurse visit once a week to check the dying person's vitals just so everyone knows what's going on. The nurse orders Rx that are related to the dying process like pain and anxiety meds.
The thing I found most helpful after my husband died was a drop in grief support group. It is very comforting to me to be with people who have gone through this experience. There was also a caregivers support group.

Even little things. Sunsets, pretty mornings, short trips if she is able.

I read this lately and was struck by what small kindnesses can mean.

http://whatwouldjackdo.org/2017/04/12/nursing-kindness-and-compassion-respect-no-boundaries-and-obey-no-rules/

You have a great gift in life and that is love. Cherish it while you are still together.

I am without words but as a person that suffers much with a multitude of problems, I am very glad to know that you are there for one another.

Till death do us part eh?

Be proud for being who you are -- a loving and caring husband.

It is not over yet. Perhaps it won't be over any time soon.

However, when it is time to go, you go I am convinced!

Take care of yourself as you are bearing a lot of burdens.

Hope you are allowed hospice care at home in your situation . My cousin with many health issues also decided no intervention with much stress relief and was able to leave in peace . I have known many that just want to go in peace . Please post if you can
Take care

Yes, we're looking into home hospice support.
Yes, we'll be finding joy and pleasure in the time we have (I don't think we've made love for the last time yet! )
Yes, I'll be getting respite support.
Yes, I'll be looking for support groups, and my work will provide a one-on-one psychologist for me to unload to.

We're just getting into the process, and we'll be finding things out as we go along.
Thank you all for your support and understanding. It means more than I can say.

My thoughts are with you. I am glad too that you are in Canada. My parents had wonderful care for my Mum when she was in her final days.
May I ask what part of Canada you're in?

kesha

shines through and you are both lucky to have each other.

Last edited Thu Apr 13, 2017, 03:10 PM - Edit history (1)

I'm so glad that your wife has relief, joy and clarity - she's obtaining closure, which is balm for that very human need to remove uncertainty and ambiguity. You've described it for her in such a beautifully articulate way. I am moved by your love for her, and wish you both all peace, and all the strength you need as you walk down this unfamiliar path together. We're strangers, but please know that I'm with you in spirit.

It is a very hard decision, but it appears you have together chosen a path that gives you peace.

One good thing about DU is that the porch light is always on. Please stop by any time to rant, chat, or just ask for a hug.

that you can sense the loving thoughts coming your way.

Strength be with you and love carry you both.

as you walk this journey together.

I wish you nothing but support, warm memories and the strength to carry on her memory when the time comes. You sound remarkably centered and strong and I hope that stays the case for you both through whatever lies ahead.

Your wife married a super highway.

She was already terminal and not offered treatment. She was the mother of two teenage daughters (and was married to a really awful person). I was out of town when she was diagnosed, my husband called me to say "you need to get your head around this before you get home and see her". I did not know what to expect, she was not a physically affectionate person, not a hugger. I entered her room and she reached out for a hug. Within just a few days of diagnosis, she was at peace. She was calm and collected and genuinely at peace. She sought affection from all who came to see her, it was startling but helpful to us.

I hope that this is the level of peace you describe for your wife and for yourself. Keep her comfortable, accept what is ahead for both of you and do not forget to take care of yourself.

I was a nurse for a long time. I have watched many people who had to accept their immediate future and found peace for themselves and those who love them. It is a great gift for all

..

Take care.

The people who do this work are among the best on the planet. They know what happens "when the rubber meets the road,' and they know what to do next, and what the options are. This is true of the people who helped my sister a couple of years ago -- they were an enormous relief to me. They ease the burden. Modern medicine is miraculous in some ways, but some doctors don't know when to give up. Hospice nurses do know, and they'll be there with you.

I hope you have some wonderful time together and her passing is peaceful.

peace and joy and thank you kindly for sharing your beautiful, heartfelt love story.

she's lucky to have you. don't forget to take care of you.

i can't help crying but i am happy you have each other and hope for the least possible suffering for you both.

Difficult as it is to believe, there will be comfort afterwards in that you did your best for love. If you feel anger, wish it were over, beyond exhaustion or any other emotions you think shouldn't be felt, don't waste time on guilt. Those feelings are normal and you are there, which is a gift that wipes out bad memories. You both show tremendous courage and clarity.

We lost my brother to cancer last December. He didn't want to go through the radiation & chemo, but he did it for his family. Sadly, it didn't help him at all. So I support your wife's decision totally.

For the rest of us when it is our turn. Thank you, dear friend.

and for her too....she sounds like a lovely lady

keep talking to us; we can help

may I ask, could you tell us what those "symptoms in retrospect" were. My mum died of cancer that originated in her ovaries, but her only symptom was fluid retention.

She also showed some abdominal swelling, but we ascribed both symptoms to changes in the cantaloupe-sized fibroid she's had for 35 years.

We haven't even seen the oncologist yet (appt on Tuesday), and she is already showing advanced symptoms - shortness of breath and stomach compression due to rapid fluid buildup in her peritoneal cavity, known as ascites. I didn't expect that for another month or two. This is going to be (insert deeply negative word here.)

Symptoms only become worrisome when it's too late.

1. It can be treated effectively if it's detected early.
2. It's almost impossible to detect early.
3. So it goes.

she looked like she was sleeping - she wasn't gaunt - except for the abdominal swelling (from the fluid), she didn't have much pain, and she ate as normal until she lapsed into a coma (she died two days later, in hospice)

can your wife be treated for the fluid retention? I know that very much make my mum more comfortable

I hope so, anyway.

The gynecological oncologist read her tea leaves (interpreted her CT scan) last Tuesday. He confirmed Stage 3 with metastases in the omentum and lymph nodes. He asked her again about treatment, as he had on our first visit. When she again refused, he was very respectful and passed us over to the palliative care folks with no pushback at all. He told us six months was a reasonable estimate, so she gets the summer.

She's had two sessions of paracentesis (abdominal fluid drainage) since I first wrote here a month ago. That's a huge relief because she builds up an enormous amount of fluid that puts serious pressure on her organs. Three weeks ago they drained 5 liters, and yesterday they drained over 7 liters - 17 pounds of fluid. It's like getting pregnant to full term every two weeks.

We had the first visit today with the home nurse and the palliative care coordinator. It was a long, intense and fruitful session, that left us both feeling relieved at the amount of assistance available. Our main concern at this point is to connect with a good pain management physician, and it looks like that's going to happen. There will also be counseling available for both of us, separately and together. That's a huge relief for me, because I'm beginning to understand just how alone a sole caregiver (especially one with no close real-life friends) can feel in this situation.

They also mentioned hospice, but she is adamant about dying at home, so live-in hospice won't be needed. I'm in complete agreement. There are day programs available for her, which is nice, but problematic because she is a night owl. I work days, she's an artist who normally keeps a 2:00 pm to 6:00 am schedule. That will change as time goes on, of course.

One of the reasons she wants to remain at home is because the privacy will give her more options at the end. Hypothetically speaking, of course... I am hypothetically in complete alignment with her hypothetical wishes, and I fully support whatever decision she makes. She has complete autonomy in all regards.

One of the issues I'll be facing is depression. Fortunately I started on Wellbutrin just after the American election (no coincidence) and it has turned my mood right around. So between that and the counseling I won't be left dangling over the black abyss without any support.

Here we go...

it takes my breath away.

Thank you for including us here in your journey.