Help me understand end stage brain tumor cancer...

[CTyankee]

I got a frantic email this morning from my co-volunteer whose husband has a brain tumor. He fell and she was rushing out to take him to the hospital. His surgery last summer could not remove all of the malignancy and he was given 8 months to live. The docs recommended that he stop his cancer meds in September but now he is falling and he is resisting help and doesn't want anyone to help out except her, even tho they have two grown sons. I can tell she is suffering burn out and has considerable hip pain (I am thinking she must be having to support him when he walks) but is still trying to carry on with her volunteer activities and care for him. She loves her volunteer work but we can fill in for her and we do.

I haven't seen him or talked with him so I don't know how lucid he is (he's been essentially out of it since before he was diagnosed, probably since last winter, but I don't know if this has worsened -- I suspect it has,tho).

This sounds ominous and I want to talk to her about hospice but perhaps that is premature. I just don't know. I'd like to encourage her to do what is best, but I don't know what that is...

Any insights on this type of situation would be helpful..

[MineralMan]

1. No way to tell where he is without a medical exam and report.

It's likely that it's end-stage and that hospice is a good alternative, but only his oncologist can say. We don't know at DU. Since he's gone to the hospital, they'll know more soon.

[TygrBright]

2. Not a doctor, but...

I have known people with different forms of cancer in the brain. There is no one clear course for the disease, so no way to predict what kind of symptoms indicate whether/when the end is near, if I understand it properly.

That said, however, it would probably be smart for the two of them to talk to a counselor who specializes in end-of-life issues, and the hospice(s) in her area can probably put her in touch with one.

diffidently,
Bright

[Warpy]

3. Hospice isn't premature, it's absolutely vital.

It sounds like it's progressing even more quickly than the doctors estimated and she is going to need help sooner rather than later. Hospice workers will get him bathed and dressed for her and assess his comfort needs. She might also be eligible for a sitter once or twice a week so she can get out of the house and take care of her own needs.

He's probably fighting it as hard as he can but the reassurance of hospice workers that the focus is to keep him at home and not institutionalized in a nursing home might alleviate some of his anxiety and reluctance to accept help.

She also needs to contact her kids for some help if they are in the area whether he wants it or not. She can't do this alone.

There is help out there for your friend. It starts with contacting his doctor to get a referral for hospice care.

[CTyankee]

15. thanks. I just emailed her and suggested a "home health aide" since she

knows my husband had one when he was recuperating from spinal surgery two summers ago. I'm hoping she'll email back saying she's gotten hospice info, but I didn't want to presume anything at this point. She seems to be trying to hang on to whatever life together they have left and to hang on to her volunteer work that brings her so much happiness. I've been helping her out with that but now it looks like she'll have to give some of it up while his illness progresses. My heart just breaks for her...

[Warpy]

22. Hospice will help them both hang on as long as they can

They were wonderful with my mother. My dad seemed to shed years once they started coming in three days a week to do her bathing. It wasn't until she became bedridden (and incontinent) that he yelled for my help.

They were also wonderful with my dad, visits with counselors to make sure he was getting enough support and lots of education about what to expect farther along the line. They also coordinated everything when she died.

Give her a shove in their direction if you have to. It's a very good thing to do for a caregiver of a dying family member.

[CTyankee]

27. Well, she said "talk soon" in her latest email to me...so I guess that will

be somewhere down the road. I plan to call her Monday and see what's going on. By then, the docs at Yale will have a good idea of what is going on with him. Usually, in a one on one talk with her she gives more information. I will try. It's hard...

[Warpy]

29. I know, I had the talk with my dad and her idiot doctor

who wasn't ready to give up and wanted to hustle her into dialysis. By that time she was blind and mostly deaf and spent most of her time wandering around in the past, something my dad agreed was probably better for her.

She came into the present when she told hospital people to get the hell out of her room when they were going to wheel her down to surgery to have a shunt placed. She'd turned down the idea of dialysis multiple times, guess they thought they could slip it past a senile old lady. I could have told them they couldn't.

That was when we finally got her transferred to hospice and got rid of the idiot.

[CC]

4. She needs the help hospice can

offer, including emotional for her. I have never met anyone that was sorry because they contacted hospice too soon, but have met lots that wish they had contacted hospice sooner.

As a friend you can offer her a shoulder and offer her specific help. Something as simple as asking if you can go to the grocery store for her, cook a few easy to reheat meals etc. Little things are a big help.

[CTyankee]

8. Yes, I agree. But he doesn't want people "dropping in" so I try to help other ways.

I was going to talk with her at our volunteer job this morning to try to assess how I could best help her. It's hard for her to leave the house for coffee (forget lunch). We had something planned and she emailed in a state of agitation that she couldn't leave him alone...that was a couple of weeks ago.

I think I'll email her (she doesn't care for phone calls) about stuff that I can do that she needs so I can get a better picture of the situation...and just ask her about hospice straight out...

[CC]

25. It is hard, not only on them but

on those that care about them. Good luck and well all you can do is keep trying.

[lbrtbell]

5. Hospice is a godsend

It enables people to stay home (most of the time) so that they can be with their loved ones to the very last. Patients' meds are brought to their front door, nurses check on them, social workers do what they can to help...it's a wonderful thing.

Please tell her to contact hospice right away, and find out what services are offered. She needs the help, and so does he. The peace of mind is immeasurable.

[Mz Pip]

6. Hospice will be invaluable

My ex-brother-in-law had a brain tumor, the kind Ted Kennedy had. We saw him at his daughter's wedding at the beginning of July. He was in a wheelchair at that point. It didn't seem to affect his mental processes, though that probably depends on where it is.

The family went through trying to decide if it was too soon for hospice but finally decided to do it. It was a big help. He didn't have to go into a hospital and passed away a couple of weeks later at home.

[snagglepuss]

7. I called the cancer info hotline when my brother was diagnosed with a brain tumor and

they were able to answer a number of questions I had about brain cancer. edit to change hotmail to hotline.

http://www.cancer.gov/global/contact

[CTyankee]

9. thanks so much...this helps...

[snagglepuss]

13. Your welcome. I remember your posting about your friends a number of months ago

It's so heartbreaking. Although I have not called any of the following, the following provides links to organizations that provide information pertaining to brain tumors specifically.


http://ontopofcancer.org/brain_tumor_support_group.php#socialw



:hug:

[CTyankee]

16. thanks for that. It seems that one by one my women friends are becoming

widows. Just in the past several years. It frightens me because some of these women lose their husbands quickly (one died in his sleep next to her...that has to be the worst...he had an abdominal aneurysm). Another died within a week of displaying symptoms.

Thank you for your kindness...

[TBF]

10. My in-laws are out of town -

retired in FL with their kids across the country. We've gotten to the point where nothing is ominous in terms of their health, but they are fragile enough in their 80s (one recently had a stroke), can't drive anymore, and really should be in assisted living. They don't want to leave their home so we've hired home health care. It is expensive, but their long term care policy is going to be covering it now that we met a certain amount of prerequisite days.

For your friend, maybe having someone competent come in even for a few shifts a week would help, and she should definitely call her children. She should not have to shoulder this burden alone.

[MADem]

11. Time for hospice.

Every case is different.

I have a friend who was diagnosed with what Ted Kennedy had, BEFORE Ted, and is still hanging on. He's had the dastardly thing dug out twice and has been on a shifting cocktail of chemo and drugs. Some side effects are worse than others.

It's still a long and painful goodbye. Without lots of respite help, it can be impossible.

Time for hospice. It's NOT premature. They can do it "in house" for a time, start out with "respite care," if that will work for a bit, or in a facility if we're close to the end. The facilities are very nice, by and large.

Go talk to her. Get the picture and push her towards hospice/respite--it's the best thing for her and him. She's no good to him if she's frazzled and exhausted.

Good luck. It sucks. It really does.

[SharonAnn]

12. He has to have stopped treatment for it to be eligible for hospice.

As long as he's being treated for the cancer, he's probably not eligible.

That was the problem with my husband's cancer. He fought it as long as he could and when the final CT scan showed it was progressing anyway, he was enrolled in hospice and treatment was stopped. He only lasted 3 weeks.

Since they don't do CT scans weekly, you'll have periods of time while it's progressing and you don't know, so you don't stop treatment and don't joint hospice. By the time you know, you're almost at the end.

[CTyankee]

17. they stopped his cancer meds in September. He's being cared for by docs at Yale.

He also had a second opinion from Sloan Kettering in New York City. Same recommendation.

[MADem]

21. Respite care, then--something to give the missus a break. nt

[dipsydoodle]

14. Oh

My wife died from a brain tumour 1990 when she was 45. He trusts his wife the most and so avoids
other help I'd say from experience. That is difficult to overcome. Do you have anything like our Macmillan Nurses in the US?

[CTyankee]

18. Is that like hospice care workers? If so, yes.

[dipsydoodle]

19. Its a charity here in the UK

They do home visits and work in conjunction with our District Nurses and occupational therapists too - both of the latter are NHS. All are trained and competent in what is regarded as terminal care and they inspire confidence from the patient.

[CTyankee]

20. Hospice care here is coordinated through the hospitals and docs.

We have the first hospice center in the United States here in the New Haven, CT area. It's wonderful. but a lot of hospice care is done in the home from workers who visit. I suspect he'll be getting this care soon and then perhaps at the hospice center if need be. They might be able to work it out so he doesn't have to leave his home.

[dipsydoodle]

23. Difficult call

I chose to keep my wife at home in the final knowledge she'd only 5 weeks left. I've ever regreted that and I suspect that neither given the choice would your friend. But as I said - its a difficult call.

[CTyankee]

24. I think she would unless she could no longer physically care for him on a regular basis.

She might have her hip pain as a result of trying to support him as he walks. If he gets bedridden she might have to help him get up to use the toilet or do other daily activities. This can take a toll physically on a caregiver who isn't so young and fit herself...it's a problem...

[dipsydoodle]

26. If he gets.....

That a killer unless you've shown how to help without hurting seriously yourself. Do not for example EVER help someone sit up by getting them to clasp their hands behind your neck. I had enough problems even with an en suite bathroom and only few steps to walk. Once completely bedridden it becomes easier - patient is plumbed in.

My thoughts are with your friend.:hug:

[CTyankee]

28. thanks so much, dipsy, it means a lot to me...