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Reply by pollyanna
29 May 2013, 5:29 AM

I totally get you, I felt like I had written what you wrote! My husband of 31 yrs has a brain tumor for which nothing else can be done, now his memory has gone and he is so confused, but he has been my strength through the last 14 months and he has kept us laughing everyday till the last two weeks. Now, I am scared for him as it nears the end and for me/our family for after he is gone. It is undescribable? to put all the emotions into words. I can't deny that this is really happening any longer, I guess I just always hoped or assumed that a miracle would happen for us oneday. So heartbroken and sad.
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Reply by sickness
30 May 2013, 12:25 AM

Ooh Pollyanna...I feel your pain...we are stressed to the max....with the end close fr you yes I can imagine everything going thru your mind!  Being scared does not begin to describe it.... yes for him to be soo strong for the last 14 months and now this!,,it is just not fair!!   My husband is doing really well right now...we were told in march that he would not make it to our sons graduation in June...but he never stops amazing them.   But I have a hard time enjoying these days because I know that terrible time can come in a blink of an eye..... And I too am scared to death!  
But....we have this site which is a God sent for me and now I have found you!!!!  We need to somehow continue to be strong for our husbands?.. 

I watched my aunt/godmother die of a brain tumor and it was horrible.

keep in touch....thanks for sharing

hugs and prayers
Nadine 

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Reply by pollyanna
30 May 2013, 5:31 AM

That is great that your hubby is doing well right now, we always have to be thankful for all the gifts big or small. I pray that your husband will get to see your son graduate, my hubby sets a new goal each month usually to try and get to another event. Our oldest son who is 27 is trying to become a career fireman, well my hubby was clinging to the hope that he would get hired so Dad could see his son wear the uniform and he made it to the final 12 but did not get hired :( but I have to believe that it was not the best fit for our son and something better will come along.
I lie awake at night and just am amazed at how our husbands hold it together, I know it's tough to be the caregiver but I really can't imagine what it is like for them to live with this disease.
Do you talk to your kids much about it ? I really haven't with ours since the diagnosis, but I have started to again. We want to keep him home if we can, did your aunt/godmother have alot of pain? can you tell me about her last few weeks? Thank you for being here, it helps to know you aren't alone :)
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Reply by pollyanna
30 May 2013, 5:38 AM

I noticed your name was Nadine, I had a wonderful friend by the same name whom we lost to cancer last November 2012. She and my hubby were fighting this disease together, but everything that could have gone wrong went wrong for her and I miss her terribly.
Keep in touch, Pauline
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Reply by sickness
31 May 2013, 2:22 AM

Yes I too dont sleep much! can't shut my brain off.   You are soo correct in saying that our husbands are such fighters and how they keep it together and keep fighting every day..can't even imagine how they do it!!!  Your son a firefighter...that  sooo awesome....and he came soo close!   They say things  happen for a reason, and that job was not meant for him!  I do hope his dad gets to see him in uniform soon!  How is hubby doing these days.  You say he's at home....is he eating/drinking?  You say he's confused...how...what do u do for him?    
 
My aunt for her final month was put in a hospice.  Soooo beautiful!, very peaceful and reassuring for her kids at that time aged 34 and 36.
she stopped talking/communicating with us final month....then gradually went into a coma for the final 2 weeks.... So hard to wAtch er like this.... But her care was awesome!  so she truly looked peaceful! 

Do ou have home care coming to your house to help out!? We do...while I am at work they come every day and make lunch for him! I hope you have help....you need to take care of yourself too!, and with homecare, they can help you manage hubby at home as long as possible!!  

My boy is very, very close to his dad...hubby fell about 2 months ago and was admitted for about a week...dehydration/ not eating etc...our son had a hard time with his and our daughter at that time just cried and cried.. That was an extremely hard time for me..have to be strong for hubby and explain and be pisitive for kids!!  Know when I bring up the future with my kids... My son gets very quiet and my daughter cries all the time in school...so I don't talk much about it!!
 
 Your dear friend that you lost, Nadine, that is soo sad... But maybe she put us together and we have this site to help each other!! 
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Reply by pollyanna
31 May 2013, 5:47 AM

I feel so bad for your kids, it's just not fair especially to them. My sons are 27,24 and 22 so even though it's tough they are just that bit older but it's still really hard.
My husband has got really confused the last two weeks and he started to sleep alot and not eat very much so we started the steroid last Saturday and he has rebounded a bit but man is he confused. Today, he told my brother that Sergio Garcia , the pro golfer, was at our house!
 We don't have any help coming in yet but the request has been sent for pallaitive care to do an accessment. Our 27 and 22 yr old are looking after Dad while I am at work. Our 22 yr old broke his ankle and had to have surgery so he's been helping alot since he got his walking cast on. The boys really have been great with their Dad and they will always have these memories to cherish.
I've got to try and get some sleep, on top of stress I have hot flashes now so menopause starting, but I better not complain about my silly problems. This disease our husbands have sure makes you realize what is important in life. When I think of the silly things I used to worry about. How your priorities change when your fighting cancer.
Take care, tty soon, Pauline
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Reply by pollyanna
01 Jun 2013, 4:02 AM

I  met with a lady from hospice today and  she decribed for me all the steps and process for palliative care. I got home from work/the meeting and I can see on call display that the cancer center called and my hubby answered the phone, so when my son asked what they said he could not remember so I will have to call them on MOnday and find out. I must remind them not to talk to hubby without making sure another person has been given the information as well.
Hubby says tonight that he feels beat up but no pain. We make sure he eats and gets his pills. I took him for a drive tonight to see our great nephew, who is 4 yrs old, play Tball. Hubby was sure our kids had played there but they never did, but I just went along with him.
got to go, tty soon :) Pauline
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Reply by sickness
01 Jun 2013, 12:16 PM

Hi sweetie.....

i am so glad that you spoke to someone in hospice.... No it is not easy....but hubby, you and your boys will see the awesome care and a type of peace that you will hopefully get there!! You must be soo exhausted... At this stage....are you considering in taking any time off work?? Don't forget tget take care of yourself!!!! Yesterday was hubby's bday...he wanted to go camping...so us,my sister and friends packed up and went...  It's rough cause he doesn't sleep and is verestless but but oh we'll we do what we can to make memories!!  I took Monday off wrk to rest a bit.... Hope your weekend goes good..   Be strong

xo
nadine 
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Reply by pollyanna
02 Jun 2013, 1:14 AM

That is so awesome that you took your hubby camping for his bday! Yes,you are right that you have to make the best of each chance you get and make lasting memories.
I will be taking some time from work but right now I work 3 days a week and it is my escape, but I know things will change even more and I will need to be at home/with him full time.
It's amazing how much better I feel since I have talked to you and the hospice people. When you know you have great support from people who know what you are going thru it somehow lifts you up.
You have a great weekend too!
Ditto

xo
Pauline
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Reply by sickness
06 Jun 2013, 5:31 PM

Hi Pauline...

How are things going?  How is your hubby doing?   Has his confusion improved any?  Man why do we have to watch the people we love suffer like this?? Did you get things organized with palliative care and hospice?   Yes when you have people who are going thru the same type of situation, it is nice to know you have them to talk to and ask for advice.

Camping was good.  But now hes fighting a cold and his  legs are all swollen.   So along with chemo this week..  he has to go for 7 days and do IV antibiotics...  So he is pretty bagged...I said why dont they admit you...I said at least if you were admitted...you could build up your strength, you dont want to end up with pneumonia...i said to him do you want to be in hospital for our sons graduation at the end of the month?   He said I'd rather be dead than in hospital!!!  This worries me, cause they gave him 3 months in Jan/Feb.... He has been doing really good with the change of chemo right now, so I REALLY REALLY hope he lasts until graduation for our sons sake and for his...they are sooo close!!   oh well...one day at a time.  He goes for a CT scan on Monday...so that will tell alot...then he goes back to see oncologist to see whehter to continue this treatment or to stop it.

Hope your hanging in there sweets....
Nadine Kiss
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