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Reply by pollyanna

15 Jun 2013, 5:54 AM

It was so scary. I called my oldest son first he just lives 5 mintues away so he came. I ran upstairs to get my second and third sons from their rooms and they were able to get hubby rolled onto his side. It was so upsetting for all of us.
I have been waiting for palliative to call. It has been two weeks so I will be at hospice on Monday to check into it because I thought it was getting expedited after the seizure on Tuesday but I guess not. From what I can gather pallaituve does a home accessment so we can get help at home.
How have you done it for 10 years? I am getting to the point that I am finding it hard to see my hubby like this. It was fine until mid May but now he is physically and mentally struggling and it is so hard to watch this happen to him.
(( hugs back at you))
Pauline

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Reply by sickness

15 Jun 2013, 2:54 PM

Oh sweetie.. I can't even imagine what you and your boys went thru..watching helplessly someone go thru that can't be easy!! Yes you would think palliative would expedite this case up. did you fill out all the paper work with them yet? They will come and do a home assessment here is where they will discuss home are with you. are you still able to manage him at home? Are you considering hospice at all?
I don't knw how I have done it.... I guess the kids were small 8 and 6 and they needed a strong mom! But watching him deteriorate and suffer now is extremely hard! And yes it is physically draining!

why do people need to suffer like this! It is sooo unfair.

chin up sweets
Xo

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Reply by pollyanna

18 Jun 2013, 2:45 AM

Yes, it is so hard to watch him deteriorate everyday. Just had a cry with my 24 yr old. :(
Palliative care called today and left a message so hopefully it will get going tomorrow with the paper work.
I am going to check out hospice tomorrow just in case we need to use it at the end. Right now he is listening to me and will shower, brush his teeth and so on. The steroid has him eating everything in sight and then some, so I am really worried about his weight gain.
I guess that is the least of our concerns, but I remember how much he hated it last year when he gained 30 lbs.
How are things going at your house? how close is graduation?
we cherished Father's Day. I took a photo of the three boys and had it put on a t-shirt for hubby and then I surprised the boys with their own t-shirts with a photo of their dad on it. They loved it!
I agree sometimes I just try and process what you and I have to do. Maybe that is one little silver lining in this is that we have been able to reach a potential that we never knew we had or it may have never come to light if not for our situations. I salute all caregivers!!!
Take care,
xoxo
Pauline

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Reply by sickness

18 Jun 2013, 7:31 AM

crying is something I do quite often these days. Be thankful you and your son can does this together! I seem to do mine behind closed doors, by myself! I am glad palliative care is finally getting back to you! And good for you getting hospice all lined up! Both of these services will help you tremendously! If hubby is eating..that is awesome...never mind the weight gain....that is a very good sign! Are you still working?
it is 2:00 in the morning here and hubby is up and down....very restless. He goes to see the oncologist tomorrow and we are both are scared to death about this appt..will she continue treatment or stop? Graduation is on the 28th....so it's around the corner! Very exciting time. Hubby seems to be doing ok...good days bad days...but more good than bad right now!
sounds like you guys had a wonderful Father's Day! Yes we have to cherish these moments! And what an awesome idea you did with the T-shirts!, I bet that was a very touching moment!

Yes I too salute all caregivers!!

hang in there sweets
((hugs))
Nadine

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Reply by pollyanna

19 Jun 2013, 3:26 AM

Well, your kids are younger so I don't blame you for keeping it to yourself but maybe you need to talk to someone and let it out. Our cancer agency has counsellors so I have seen someone recently. Do you have anything like that in your area?
Palliative called today and we have an appointment on Thursday where they come and interview my hubby and the family.
I noticed that your post time was around midnight so I was wondering why you were awake.
Yes, I am still working but our 24 yr old son doesn't think he can work any longer cause he wants to be home with his dad but his younger brother can't work due to a broken ankle so he is here to look after dad. So I am feeling really rattled because he needs to be working to pay his bills just as I am. He is just so mixed up he doesn't know what he wants
I don't need another thing to worry about, sometimes it seems like our sons can be so selfish and I am doing everything but think of myself. And then I tell myself that it must be really hard to deal with this when one is so young. Money makes everything so stressful and I guess I can't expect them to get it or can I? I need to have a talk with each of them.
I hope the 28th comes fast for you guys! My hubby has always said that his good days have outnumbered his bad days so that is domething to be thanful for. It sounds like that is the same for you guys :)
Yes, Father's Day was good, how was yours?
I will be thinking about you tomorrow as you go to the drs appt. Keep your chin up cause we all know those trips can be downers.
Talk to you soon
((hugs))
Pauline

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Reply by sickness

19 Jun 2013, 4:17 AM

Can your older son get compensation from his work....there is a compassionate care leave thru unemployment...he and even you should look into.... Yes right now their dad is important to them and they are needing to be with him! I get that...but like you say...bills don't stop coming in.. They may need to take some time to be there before things get real nasty..they may want some new memories now....I don't know ...this is soo hard! where about s do you live... im in Manitoba and everyday I think of this compassionate care leave.....but it's only fr 6 weeks!
When hubby doesn't sleep for whatever reason... I don't either..since his fall a few months back, I hear every little move he makes everywhere in the house! And let me tell you 5:30 comes very fast for work the next day! But somehow, one way....like you....we keep on functioning!
Hubbys oncology appt went awesome today... No jaundice, no ascites and mild swelling it was like a miracle. She said continue palliative chemo and will hope for better CT results mext time! I know, i know never xpected that one.... You could just see the stress leave my hubby's body when she was saying these things! So we will take this news and live in this moment for as long as possible!
So my dear Pauline...NEVER give up, my hubby is living proof of that! They had him written off 3 months ago!,

((hugs))
Nadine

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Reply by pollyanna

20 Jun 2013, 4:29 AM

No, he does not have enough weeks in because he played hockey in the USA til April. he did not save any money.
I live in BC.
I have a employment insurance claim that I open every January because the office I work at closes for 9 weeks every year and I only get paid for 3 weeks vacation time.
I am so happy for you two that his appt went well.
I got a surprise today, I came home and found a visitor. YOu know I told you that I lost my friend Nadine last November! Well, her husband is here from Alberta. The boys knew he was coming but kept it a secret. I instantly had a stomach ache. Our visitor broke his leg last February and still walks with crutches. I don't need another person to look after!!! I guess my boys thought, well I don't know what they thought but I sure don't need this. I just want private time with hubby. I haven't asked him how long, but is leg is hurting so he may have to go to emergency tomorow,but my son can take him. Boy, nothing is going the way I would like it right now. I just feel down right now.
Listen to me whine,! I am sorry I don't want to spoil your good day!
I hear you about those early mornings. Yuck!
Got to try and get hubby into the shower.
tt you soon,
Pauline

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Reply by marstin

20 Jun 2013, 11:13 PM

Hi Pauline,

I have been reading what you have written and truly feel for you. I can somewhat understand that your son's need to be with their dad and grab every precious moment that they possibly can. My daughters aged 21 & 23 somehow managed to keep going to school and working throughout their dad's illness but it was extremely difficult. Sometime's they just wanted to run away from the house so that they didn't witness the deterioration of their dad but other times they just wanted to be here to support me and to help take care of him. It can be an incredibly bonding time but it truly is a time only for immediate family without other distractions. I'm sure that your son's were thinking it might bring some consolation to you to bring in someone who has gone through similar circumstances but I can hear the stress that it has created for you. Hopefully this friend will realize that it's not the time to be there. Your son's are still very young ( kids these days seem so much younger than when we were their ages) and are very frightened. I would guess that they are afraid to say too much to you and add any extra stress to what is already an enormous load for you.
Next month will be the 1st anniversary of the passing of my husband and I must admit that it still feels like yesterday in so many ways. This site and all of the wonderful people on it, have helped me keep my sanity and been the greatest support through the darkest hours. Never be afraid to share on here or worry that you sound whiny. We've all been brought here so that we can vent and know that others understand.

Hugs to you,
Tracie

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Reply by pollyanna

21 Jun 2013, 12:02 AM

Thank you so much Tracie for your insightful words.
Yes, you are right about this site and I feel that it really helps me, too!
I am so sorry about your husband, I am not there yet and I can't even imagine what it is like or what you are going through. How are yout wo daughters doing?
I am really worried about our three sons to say the least.
Thank you, Pauline

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Reply by marstin

21 Jun 2013, 11:15 PM

Hi Pauline,

Thank you. It has been a tough 11 months because not only did I lose my partner (on what was to be our wedding day) to cancer, I lost my other closest friend ,my mom, from the stress of it all only 7 1/2 weeks later. All that I can say is that it has changed us drastically. It has brought us much closer together but that hasn't happened without a lot of turmoil and pain. I sometimes think that we are still in denial that life could be that cruel and take away the two people that meant so much to us. Our daughters try very hard to be strong and with each of them being unique, one of them will talk about their feelings and the other avoids talking about it as much as possible. Len was more concerned with the one who doesn't share and how she would deal with it and yet he was closest to the one who does share her feelings. I have just started councelling recently and the younger one is considering starting soon. As tough as it is, you do find a way to move forward little by little.

Hugs,
Tracie

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