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My husband is dying 
Started by pollyanna
28 May 2013, 6:44 PM

My husband has the worst type of brain tumor and after 14 months nothing else can be done. He has gotten very confused, don't know what to expect next, how much time do we have? He has been so brave and kept us laughing everyday. I can't be in denial any longer. We have been married 31 years and he has been so strong for me and our three sons.
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Reply by moderator | modératrice
29 May 2013, 12:45 AM

Dear Pollyanna,

Welcome to our community. I'm so sorry about your husband's diagnosis. I can almost see you shaking yourself as you say "I can't be in denial any longer." But hope and denial are intrinsic emotions that we hold on to even at this stage. You might like to read the article that our spiritual care advisor, Glen Horst, wrote here:

Hope and Denial

Most of all, I want you to know that you are not alone. We are here to accompany. I'd like to introduce you to another member of our community - "Sickness". You can read some of her story here:

hi..i'm new here - husband has colon cancer 

Perhaps you would like to write a message to her on the link above. When you do, she will get an email notification as will the other members who shared with her. 

How old are your sons? Do they live with you and your husband or close by?
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Reply by pollyanna
29 May 2013, 5:17 AM

Our sons are 27,24 and 22. The 27 year old does not live at home, but lives close by . The 24 yr old has played pro hockey in the USA but is home now and the 22 yr old goes to university 45 minutes from here but is home now as well. :)
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Reply by JennJilks
02 Jun 2013, 11:38 PM

You poor thing. This is so hard.
I truly believe, however, that once you know what you are dealing with, you can be stronger and have a handle on what you need to do.
My father had a brain tumour. The disease trajectory is difficult, but it is one you can learn about. I didn't have a clue.
That said, call your local hospice. See what help they can give you.
Dementia is predictable. The blood simply isn't getting the the brain cells.
I wanted to know to know what to expect. I couldn't find information.
It is up to you.

You can ask where the tumour is located. You can tell that that brain function will diminish with time.
My dad loved me and depended upon me and needed me until the end.
It was not more than i could give.
It was an honour and a blessing to manage his care. You do the best you can, as your hubby cannot expect more than this.
All my best. Do not hesitate to ask for help. You can Google me! I'm kinda out there. I learned so much about myself caring for Daddy. Mom didn't want me to assist her at all. I hae three degrees in people! It was tough!
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Reply by pollyanna
03 Jun 2013, 1:23 AM

I did have a meeting with hospice last Friday and will be meeting the palliative team soon. My husband's tumor is right frontal lobe so his short term memory has been gone since Mother's day weekend. Now he needs to be watched 24/7, but he is not even doing his daily functions like showering and brushing his teeth anymore. We started the steroid one week ago and he has rebounded a little because he was not eating much but he was sleeping alot.
I have learned alot this last 14 months about life and about myself. Yes, I have done some googling to find out what to expect. I just hope he does not have any pain because that is how his tumor was found after complaining of a headache for a week.
Once the dementia or confusion came how long did your dad live for? I know everyone is different, did he have any pain at the end?
Thanks for your help :)
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Reply by JennJilks
04 Jun 2013, 12:52 AM

Pollyanna, I wish you the best. 
If you can find a copy of my book, please read it. Not to flog it, but I documented his deterioration.
There is a huge Brain Tumour Society in the UK,  with information.

I wrote about the last weeks and days. Intercranial Pressure. 
I fought months to get dad pain meds. I finally spoke to a pharmacist who sang in my choir!
Typical of Brain Tumours are headaches.
You can read about the signs of pain. I print this for my clients. With a brain tumour and dementia, clients cannot process the abstract concept of pain.   There are many pain assessment tools.
With a palliative diagnosis, the disease trajectory is predictable. 
My father had dysphagia. He also couldn't retrieve nouns, and then his language didn't make sense.
I have several dementia patients where I volunteer, and they will speak full sentences, with intonation, that simply do not make sense. 
I so laud you for searching for information. I was looking and looking. It wasn't there.
I wanted truth and light. I wanted to know what to expect.
Dad lived about 9 months with confusion, dementia, and developed delirium from an infection.
 You take good care. We are thinking of you. 
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Reply by pollyanna
05 Jun 2013, 1:40 AM

what type of brain tumor did your father have? I was just surprised that he last 9 months after his confusion/dementia started. Where was it located?
My hubby's is a Grade IV glioblastoma, very aggressive with fingers, it was large when they found it and it is mostly in the right frontal lobe but has crossed over as of last Nov/2012.
Thanks, :)
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Reply by JennJilks
05 Jun 2013, 11:05 PM

Dad had glioblastoma. 
Have you got the brain tumour book from the Canadian Brain Tumour Association?
It didn't help us much. We were basically dealing with symptoms as they arose.
Dad had an MRI in Toronto, July, 2006, we rode 2 1/2 hours in an ambulance, only for the oncoligist to tell us that it had recurred, 5 years after it had first been surgically removed and that he was palliative. Full stop.
Sent home. My mom had passed over May 2006.
Dad's was in Broca's area. Receptive language, then it spread to expressive language.
What you need to remember is that if the tumour is in the prefrontal cortex, the high level thinking skills in the front of the brain, it takes time for the tumour to affect autonomic functioning.
The oldest part of the brain, the brain stem (back of the neck) is where the autonomic functioning happens: breathing, digesting, ect.
This is the last part of the brain to deteriorate, which is why people with dementia can live a long time. The brain cells furthest from the heart, lungs, doesn't get blood and can be blocked by plaque.
I hope this helps. 
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Reply by pollyanna
06 Jun 2013, 4:51 AM

Yes, I got the book when hubby had surgery.
Your father survived 5 yrs? We were told that with the type of cells my hubby has meant the prognosis was one year even with surgery, radiation and chemo. The man who  has lived close to us survived 17 months, he passed away 2 yrs ago now.
MRI tomorrow so we'll see what is shows, will get results on Monday.
Thanks for your help.:)
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Reply by JennJilks
06 Jun 2013, 2:09 PM

Yes, dad had surgery March, 2003, a month before SARS hit his hospital. (WHEW)
The said they couldn't remove all of it and he had MRIs every 6 mos to see when it would return.
Now, all patients are different. Dad did not have radiation the first time. When it returned, June 2006, they gave him radiation. Mom was having chemo at the time. It wasn't fun.
They are reluctant to predict. It really depends on thei patient, their health, frame of mind, etc.
Look after yourself.
All the best. 
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