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Reply by pollyanna
24 Jun 2013, 5:11 AM

I am so,so sorry, you have had to deal with so much. I still feel like I am in denial and that my hubby will still have some life saving cure brought to us in the nick of time. This isn't what happens to our family, we have never really had any tradegies although my hubby's younger brother died of a drug overdose 7 yrs ago, but not much has ever happened to my family so it still seems so surreal,like a bad dream.
I hear you about the kids being opposites, we have three boys so they don't talk alot about t will good if your quiet daughter gets some help for sure.
I really feel down today, just can't seem to get going on anything. Not even the paperwork that I have to fill out for palliative care. Haven't been sleeping very good either so Ive got to try and get myself going. Three more days of work this week and then I am home for almost three weeks so that will be time for some rest, I hope.
Take care, Pauline
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Reply by marstin
24 Jun 2013, 5:34 PM

Hi Pauline,

There is nothing wrong with wanting to believe that your husband wil be cured. Miracles do happen sometimes and if it doesn't you can face that part of your journey when you get there, not before. I guess for the most part my life was pretty uneventful too other than losing my dad 5 years ago but he had been in ill health for many years. Len was the healthy one in our household and looked after me through many ups and downs with my health. He was always an optimist so when he was first diagnosed we all believed that he would beat it because everything seems to go his way in life. I think we are still in disbelief that he didn't win that battle.

My older daughter, the quieter one, the angrier one, refuses to see a councellor. She is trying to deal with it all on her own. On top of the losses we are having to hurry up and get our house in order to sell because we can't afford to stay here and that has added to the stress around here. There is alot of denial for my girls but for me the reality is all of the work I have had to take on to try to stay on top of things and clear our house and worry about where we will live. I have been a stay at home mom for over 20 years so I also do not have any income to rely on. I guess what I'm saying is that we all work through the things that are thrown at us and although it is painful and frightening, it is possible.

Be gentle with yourself Pauline. One thing I have learned is that there are days that you just can't face what you know you need to do. I found that beating myself up served no purpose and that tomorrow would have to do, just not today. I think if you try to adopt that mindset, it takes some of the pressure off.

It's good to hear that you will soon be able to leave your job behind for a few weeks. As much as you want to care for your husband, you have to take care of yourself too. I hope that you can find time to just go for a walk, have coffee with a close friend, do some gardening, whatever it is that allows you to care for yourself. Only by doing this can you keep your sanity and wellbeing.

Hugs to you,
Tracie
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Reply by pollyanna
15 Jul 2013, 1:47 AM

Well, where do I begin because alot has happened over the last two weeks. My hubby had some pain that was thought to be constipation caused by the morphine but after 6 days he had suffered too long so I took him to emergency only to find out he has blood clots in both lungs! So we got him home with all the hospital equipment and he actually had a good week with all the meds but yesterday he had three seizures in 12 hours. It seems the brain tumor is progressing, so hard to watch!
The son taking the three online courses is struggling with them after I had told him not to take any, so more stress and the other two haven't worked in weeks so more stress along with the biggest stresser of all.
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Reply by sickness
15 Jul 2013, 2:21 AM

Oh my dear...it has been awhile since we touched base....
. My heart sooo goes out to you!!...wow blood clots in both lungs...geesh, then to think you week is going good with the meds, then... bam... 3 seizures... There are no words to even imagine what you are witnessing and going thru!...man to even suggest to stay strong for him.is a understatement... Man you are truly a rock to hold your family together at this time....can your son drop the courses and get a medical note....family sickness..and take them at a later time?  Your other boys not working ..yes that does not help.     But what about you, are you still working?   Remember you need to take care of yourself! Being a caregiver is extremely stressful, and you need to be strong, positive, healthy and there for everyone!   Not easy.....   Whatever happened with hospice?   Did you get homecare involved yet?  I sure hope ar least homecare there for you!
hang in there sweets...your in my prayers.

 
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Reply by NatR
15 Jul 2013, 2:37 AM

Dear Pollyanna,

i wanted you to know I read your note, and like sickness I want to let you know you are in my thoughts.

it is so hard to hit those tough times when things change and your loved one is in crisis.
hang in there, you are doing a good job of taking care of your husband.

It is really hard when your kids are also affected and struggling to keep going.
i am hoping your son can make up for lost time, courses, and catch up at a later date
as for your other kids - I hope that a new opportunity comes up soon for them

Naturally you are all feeling the stress - and it's tough to stick to daily jobs, school etc. when your loved one needs support.

i hope you are able to find a way to keep going, find support to ease your load.

as much as we want, need someone to help stand in for us, often we just keep going, charging our  batteries with snatched short rest periods - feeling so guilty if we can't be there all the time.

please write when you have an update or need to share.
do try and take care of you as you take care of your husband.
thinking of you,
natR  
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Reply by pollyanna
15 Jul 2013, 6:14 AM

We do have respite twice a week for two hours which started last week and we have the homecare palliative team with nurse, dr etc all on board. Increasing the steroid and Monday a mobile lab comes to do blood work to see if hubby can have a higher dose of anti seizure meds. I have now stopped working and I went and had my Mother' s day gift done, a mani/pedi - I felt so guilty and had my cell phone by my side the whole time! Trying to go for a jog some mornings and a walk some evenings. We have lots of support but so many visitors that I've asked some to wait cause we just need a break. Everyone asks "what can we do to help" or "don't forget to ask for help?" but my mind just goes blank and I can't think of anything! It is tough to change my hubby's pants like you would for a baby... hard to see him like that but he still has a sense of humor through all of this. July 10th was the end of the month he was given so now we are on borrowed time, but I have this feeling that things can go sideways very fast. We have a hospice in place but want to keep him home as long as we can, and hopefully til the end. :)
Hanging in there but feel like I am going to explode sometimes!! so I go outside and do some physical work on the farm...Pollyanna
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Reply by pollyanna
15 Jul 2013, 5:14 PM

Hi "sickness"Nadine, how did your son's graduation go? How is hubby doing?
Let me know because I have been thinking about you!
Pauline
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Reply by sickness
17 Jul 2013, 1:47 AM

Hi Pauline..  It's hard leaving the house to do something for yourself without having the guilt..and everyone says yes, but u have too!  and a mani/pedi wow...you go girl.... i am soo glad that you finally have the support you need!  Borrowed time.. Yes I know ll about that..  sometimes the dr's are wrong!!!........
remember they were telling my hubby that he wouldn't maker grad.... Well he did make grad and actually he's doing fantastic!!  Hubby was soo emotional that day...him and our son are sooo close...we are even going camping this weekend........so if someone asks me if I believe in miracles....your damn rights I do!!!!!! So never give up my dear! You just never know! ... But on the other hand yes he too is on borrowed time...my problem....I don't know how to "enjoy" this time with him....because I'm always thinking is tomorrow going to be the day he turns....  

cyber hugs (( xo ))
Nadine

 
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Reply by JennJilks
17 Jul 2013, 3:06 PM

Pauline, it is so tough when people ask, 'What do you need?"

I was barely able to care for my mom, let alone myself, then for folks to demand a To Do List - I couldn't manage.

One of the things my dad's friends did was to drop off their favourite sandwiches for lunch for all of us. Unsolicited, it was such a gift. This was after her best friend complained that my mother was making many demand of her (fetching mail, delivering dad to apointments). 

Do whatever you have to to get through it. Give yourself permission.
 There is nothing you can do that will result in failure. There is nothing undone, that means you are not doing your best. You do the best you can at the time.
I was so afraid of making a bad decision, not doing something I should be doing/ (As if I really knew at the time!)
Take care. 
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Reply by pollyanna
03 Aug 2013, 5:35 AM

I have not posted for a long time. My hubby is at the end. It has been 8 days since he has eaten, or been out of bed. He has four sub Q lines that myself and my three sons administer drugs through. As I am typing I am watching him slowly die and I can't help but ask why we treat our animals better than humans? Terrible to watch even though we have kept him comfortable and pain free so to speak. Everytime the aid comes to give him a sponge bath we have to roll him over I know he is in pain even if I give him the morphine before they arrive. It has to be the saddest thing I have ever experienced yet everyone around us is so wonderful. I told him today that he did not have to hold on any longer because we would be okay and when he was ready it would be alright with us. We know he can hear us but the last wo days we have not got any responses whatsoever. I have been home since th end of June and I can't believe it is August already and the compassionate care leave runs out Aug.15th.
A nurse told me that a human can lasst one month with water even if they do not have any food, I was shocked. Of course it would depend on their size as well. She told me that once there is a dry pad(Depends) death will occur within 3 days.
Sad, sad times...
Polly Anna :(
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