Who Knows About Aggressive Terminal Brain Cancer?

[tiredmommy]

MIL is going downhill fast (in my opinion). She can no longer walk unassisted (walker doesn't cut it), she's on oxygen near constantly, weakness is now affecting both sides of her body, her appetite is sporadic and she's sleeping quite a bit. I'm very worried because sister-in-law is leaving Sun, 5/27 through Sun 6/3. husband is going to a conference in AZ from Sun, 6/3 through Wed, 6/6. mother in law will be staying at the Hospice facility from Tuesday, 5/29 through Sun 6/3. father in law, husband and I will look after mother in law on 5/27 & 5/28. I'm concerned that mother in law may very well pass away while sister in law or husband are away. Her life expectancy was roughly placed around Memorial Day weekend when she stopped treatment 11 weeks ago.

Is this a realistic fear?

 

[InsaneCdn]

{{hugs}}
It's really a tough call. husband used to work at extended care - end of life patients, etc. And... sometimes they seem to hang on forever, and others drop really fast, and there really isn't any way to tell which is who.

If she knows that husband and sister in law are coming back in a matter of days, she may hang on that long... but there's no way to know for sure.

 

[Hound dog]

TM

I'm sorry to say that it sounds like a realistic fear. However, since I can't assess her in person.............why don't you get an objective opinion from one of the nurses caring for her? Like one of the hospice staff? They may not pin down a specific date (none of them will) but might give you an estimated time frame that is realistic based on what they're observing and their experience.

But the breathing issues/sleeping makes me think you may be right. Aggressive brain cancer is a pretty darn fast deterioration. It will vary from person to person, though........so of course everyone is different. Some people, although they believe themselves to be prepared to die, hold on long after they should've passed. Others, will go very quickly with little or no warning. Fear of death can be a powerful thing. mother in law (although hers was a different situation, but just as acute) held on unbelievably because she was terrified. Sister in law and I each sat with her and held her and reminded her father in law was waiting for her and told her that it was ok for her to let go. It was then she finally let go.

Are they going so far that getting back would be an issue?

(((hugs)))

 

[buddy]

No idea here on the medical side ...I'm so sorry she is so ill. I do agree that there can be way more than the physical that may influence things. My cousin had an aneurism and he went downhill fast. His family all said goodbye when the docs said he was brain dead. His son wouldn't come to say goodbye. They removed life support and he didn't die! Finally the family talked the tween aged son into going. He went and said goodbye and my cousin who was supposed to have no brain activity finally let go. We r talking a couple of days he held on. It was so sad. But very powerful to his son and family that the essence of him or his spirit or what ever you call it held on for that closure.

 

[DammitJanet]

tm, did hospice give you a brochure with the signs to look for of impending death on it? They gave one to us. It told us what to look for such as his hands would get colder and wouldnt warm up as well as his feet. We wouldnt be able to move him from the chair to the bed and back anymore. He would just lay in the bed and take his morphine. Of course, he stopped eating completely. We got small sips of water into just to keep his mouth wet and moist. There wasnt much swallowing going on. From the time we really knew he was going down hill...like my step mom told me that the doctor's told her that it was time to call the family in, he died within 2 weeks. He did hold on to stay somewhat well enough to at least realize I was there and he also held on till Cory got there when we told him he was coming. He died the night after Cory got there. So I think if they have given you a time limit of right around then, it could be then though she could hold on till her kids come back.

 

[tiredmommy]

I'm usually not there when the nursing staff is there during the day. Death isn't imminent yet, but she seems to be just outside that range. I have a sneaking suspicion she may remain at the Hospice facility rather than come back to sister in law's home. As for where they're traveling: they'll each be out of state: sister in law in FL & husband in AZ. There are very few direct flights in or out of Buffalo.

 

[Fran]

TM, a lot will depend on whether she has any other issues such as cardiac or respiratory. I worked neurosurgery for the majority of my career and there isn't any way to know unless the location of the tumor is in an area that is going to cause imminent death.
From the sounds of it, it could be quickly but some do gradually go down hill for a while. My mom passed away almost exactly a year ago. She was in bad shape for the last couple months but eventually we had to take our lives out of hibernation and do what we need. She ended up leaving us more unexpectedly than the hospice nurse thought. (I thought she was struggling more)
My heart goes out to her children who worry about leaving her. I remember how difficult for my siblings, who were on their way, felt but they were gratified that mom wasn't struggling any longer.
All you can do is deal with today. Saying good bye each time they leave is the only thing we could do with our mom. My thoughts go out to your m i l and her family.

 

[cubsgirl]

I think your fear is realistic - but you just never know. I worked in a hospital and some people hung on for quite a while. My prayers are with your family during this very difficult time.

 

[keista]

I think your fear is realistic, but I don't think any of these trips should be canceled based on that fear.

The living need to say goodbye and then go live. If she's still around when they get back, they get to say goodbye again.

 

[witzend]

I think that this date is probably realistic. My cousin died of an aggressive brain tumor, but this was many years ago. It sounds as though the tumor is taking over her bodily functions, and it's only a matter of time before it affects enough of her voluntary muscles and organs to shut down.

I'm so sorry.

I don't know that trips should be cancelled. My friend's father recently passed after a prolong illness. The family is large and several of them had planned vacations for around the time of his death. The memorial service was delayed for a few weeks until everyone - who were scattered all over the country in any case - was available.

 

[TerryJ2]

I don't know, but I understand your fear. I would go anyway, because if you put your life on hold, you won't get anything done.
My b-i-l is in hospice for the same thing, but it's been 6 mo's since he was diagnosed and 3 wks since he's been in hospice, (the diagnosis is 4 mo's to 1 yr, with-5 mo's being the average) and every now and then he rallies and can actually go out to lunch. Go figure!

 

[tiredmommy]

I guess I'm just afraid that husband or sister in law will feel guilty is she dies when they are away. Neither has a lot of personal experience with death and they don't seem to realize that she's getting a lot closer to death.

 

[keista]

I guess I'm just afraid that husband or sister in law will feel guilty is she dies when they are away. Neither has a lot of personal experience with death and they don't seem to realize that she's getting a lot closer to death.

Why would they feel guilty? Are they not spending enough time with her now? And if they are convinced to stay, and she doesn't pass, they may resent the person that kept them from going. If they choose to change their own plans, that's one thing, but I don't think it's necessary to suggest it.

Death is difficult regardless of how much experience yo have with it. in my opinion ppl's living relationship and expectations have more effect on reactions than experience.

 

[TerryJ2]

Well, I guess if this is their first time dealing with-death, they'll feel guilty. But if m-i-l is not able to recognize anyone and is just sleeping, it won't make any difference.
I agree with-Keista, that death is difficult, no matter what.

 

[ctmom05]

End of life issues can feel very awkward and unfamiliar to family/friends. It's natural to have questions .. .. ..

I think you've gotten good advice from the other folks here - wishing you all Godspeed as the end draws nearer

.

 

[Lothlorien]

I'm just curious as to why she isn't staying in Hospice and why she is coming back to the house?

 

[tiredmommy]

They like to keep patients in-home as long as possible because most people want it that way. Hospice monitors the care the patient is receiving and their condition and will move them in when they deem the caregivers can no longer adequately offer the care the patient requires. My mother in law receives frequent visits from an RN and has a aide for a few hours a day. sister in law also qualified to have a homemaker come in one morning a week to assist with light housekeeping. I believe my mother in law will be moved the facility as my sister in law won't have the ability to offer the level of care required at the end of life stage. My grandmother, however, died at home because my aunt was a retired registered nurse and was able to offer a continuity of care right to the end.

 

[TerryJ2]

TM, that's the same thing they're doing for my b-i-l. He is at home and intends to stay there.

 

[rejectedmom]

TM, I am sorry that this is such a hard time in your life. I think that we can never know when someones time will come. We can guess, but we can't know for certain. So, for that reason I feel it is not necessary for everyone to put their lives on hold. We got so many "it's time" phone calls when my dad was dying. I was run ragged driving back and forth (3 hours one way). I'd get home only to be called back the next day. This went on for weeks and eventually he died alone anyway. I had just left after staying at his side for several days. My brother took over and sat with mom. Dad's organs were shutting down one by one and he was in a coma. after days of this, my father's heart got tired and kept stopping and then starting up again. The alarm was shut off because it was too hard on my mother. Then mom had a heart episode herself while sitting vigil next to dad's bed and ended up in the ER. When her crisis was over they told my brother to take her home because the stress was too much for her. She went back upstairs to say good nignt to my dad and left. Dad died that night. It was almost like he was waiting for her to leave to spare her that terribly sad moment. He was very protective of her. So in my opinin there is no one way to dealwith these kinds of situations. A person has to do what they feel is best. (((Hugs))) -RM

 

[Lothlorien]

((Big hugs))