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Reply by marstin

17 Nov 2014, 5:13 PM

Hi Tuna,

It sounds like you are juggling so many things at once. How kind of you to try to appease your mother in law by buying her flowers. Her raw pain is obvious but it's unfortunate that she chose to attack you for what is happening. You are doing the best that you can by supporting your husband and his decisions. You are the one who is living this on a daily basis and giving it your all. You can do no more than that.

One thing that I believe most of us find on this journey is a part of us that we didn't know existed. This consists of deep understanding and compassion that deepens as we go through these tough times in our lives. On this site we all seem to join together and take each other's hands and hopefully bring some strength to those who need it. Many kind hearts gather here to share their experiences and I think that just knowing you are not alone brings some comfort.

I am sorry to hear that your daughter is not doing so well. Mental health issues can be so complex. I'm sure that 3 weeks feels like eternity to you when you want that help for her right now. Hopefully the time will go by quickly and that they will be able to find a way to combat the demons that she is fighting.

Hugs,
Tracie

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Reply by Xenia

17 Nov 2014, 5:24 PM

Good Morning All Wise and Good Friends:

So much good information on this message board. Nounce, when you said it is different wanting it over and wanting a loved on to die. I get the difference now, yes, wanting it over may sound selfish but it would be good for the dying person and the caregiver as we see the pain, anguish and all that goes with dying over a long time. My son said to me "Mom, death is easy it is the dying that is taking so long." So we learn from each other that we do not wish for death of a loved one just a blessed departure from this world in a timely manner so they do not suffer needlessly.

To-day the care aide comes to bathe John, he has had a number of really bad evenings. The pain must be over 8 on the scale as he calls for his breakthrough morphine. Usually he will refuse meds as he is so stoic, however, I know he is suffering but I don;t bug him until he calls as he has to deal with his pain in his own way and hates to have me hovering over him.

Old Bat, how are you this morning. Have you found the group you were looking for? Toronto, my husband is formally from Windsor and spent a lot of time in Toronto, he also worked on the boats or whatever you call them that went up and down the lakes. He always was near water and worked as a LongShoreman in Vancouver when we moved here. When John passes there will only be one member of his family left, his devoted sister, June. She is afraid I will not be in contact with her when John passes, of course I will and so will our children. They have bonded with our family well and we could not break off the relationship.

Tuna, your daughter is going through many phases with her bi polar illness. Has she been diagnosed as such. The Highs are so hard to take, it seems they are running 24/7 and they have to do so many things, run, run and then comes the lows where they need to sleep or are inchoherant. I know this with our son, he could be so loving and then turn on a dime and we would not know what set him off. He was and is a good worker, kind and caring but his bi polar symptoms made him a person we did not know. I cried many a tear and then he went into rehab. Came out changed and took about 2 years to see the real change. Slowly he had to change and now he is active with his group, active with family and a good all over guy. Helpful to everyone but is still not able to stay with large groups and needs his quiet times. He will not go to a Casino as this can become an addiction as well. He knows himself very well and has worked the 12 step program well. I share you pain with your daugher and hard as it is one has to back off and let them hit bottom and then if they really want to get sober they will ask for help and work the program. We had to do this with our son.

Here I am writing a book. The phone just rang, regular care aide unable to come to-day so we have a sub. Just as well as they all are good.

Take care.

Xenia

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Reply by tuna

17 Nov 2014, 5:40 PM

Xenia- we seem to be living parallel lives in some aspects! Your posts are always great.
Last night was difficult here as well. Lots of breakthrough pain. My dear hubby had to take quite a bit of breakthrough meds last night and then finally downed an extra morphine. I hope his agitation is not as bad as it was yesterday.
My daughter has been to detox and to rehab before. She has promised multiple times to quit. I hope she really does this time. Things spin out of control quickly when you mix mental health issues and non rx drugs and alcohol together. The psych ward DR diagnosed her with bi polar last week. But my daughter left before anything could be done- IE meds, an assigned psychiatrist. This happens all the time. She lands in the hospital ER for drugs and alcohol, she needs to detox before a proper psych work up can be done, but she doesn't stay sober, and never keeps the appt with the psychiatrist. There is always hope.
Suns out today!!!! My plan is to get out for a walk, once with hubby if he can bear it. And once by myself for some self care

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Reply by tuna

17 Nov 2014, 6:20 PM

“I cared about them. I wanted them to feel better, to live better lives. And then it occurred to me - I cared about myself. I wanted me to live a better life, too Caring about myself was allowing me to care about others.”

― Cate Tiernan

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Reply by KathCull_admin

17 Nov 2014, 10:38 PM

That's a beautiful piece Tuna. Thank you for sharing.

Following on that, I am not sure if you saw the thread Colleen started Sweet Escapes for Caregivers .
Katherine

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Reply by Xenia

18 Nov 2014, 9:53 PM

Good Afternoon all:

Another day and another scare or bad day whatever we call these days.

John is having more extreme pain and I am beginning to see his need to get to the hospital for an examination to find the designation of his pain. He has COPD, Congestive Heart failure, cancer in his right lung, diabetes, etc. So when he has pain in his chest as he is having to-day I go through the ritual of Nitro, pain pills, up oxygen do a nebulizer to get him comfortable. Just wishing it would end for him as he asks me when do I know when I will go.

We joke and I say I sure am not going to try it first to let you know. I have administered 5 xtra mls of hydromorphone on top of his 9 mls of long lasting morphone but the breakthrough pain just settled down and he has some residue pain in his chest.

The kids are planning to be here for his 86th birthday on Thursday and I sure hope it goes off well as they have been planning this for months, that is if Dad is still with us they kept saying. It would be terrible if he had to go before Thursday, here I am on pins and needles again.

I loved the poem you put on your message Tuna. Carries a lot of meaning for me.
Old Bat if you are reading this message board, I do remember viewing your video but it was when I first contacted this message board. Great Video and thanks for refreshing my memory

All for now, feeling weary so will try to nap while John is sleeping. Not doing much for dinner as he is not hungry. Lite soup will be good or his Ensure.

Take care.

Hugs to all.

Xenia

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Reply by tuna

19 Nov 2014, 1:18 AM

Hi Xenia,
that is a scary day. You are pretty amazing to give the level of care that you do at home. Well done. What a blessing you are to your husband.
May you have all the strength you need to get through today and enjoy another tomorrow
~hugs from me ~

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Reply by tuna

19 Nov 2014, 11:26 PM

Musings....
Last night was wild. Lots of breakthrough pain for dear hubby. We could manage it so he doesn't have breakthrough pain, but he says he likes to fel the pain to remind him he is sick. I can't push him to take more meds, so we will leave that alone for now. He also had a lot of difficulty urinating last night, which was causing him a great deal of distress. Onde day he will likely need to be catheratized. Neither one of us got much sleep. And today he is jaundiced again, but a light jaundice color.
Two days ago I thought I can't take care of him at home anymore. Then I thought maybe it's more of a "i don't want to do this anymore".
The cancer has metastasized to so so many places in his body. Obviously it has affected his reasoning ability. Coping with the cancer created personality is a skilll to be learned.
So, i did some soul searching.
And I dug a trench, mentally. Digging a trench is different than digging a hole. Digging a trench means you are preparing for a long battle. And a trench is long- leaves room for sideways movement. I realize the battle has gone on for longer than I anticipated. And I had just enough mental and emotional gas to get me through a limited period of time. Time to refuel and refocus.
I can't give up on this situation. There are no other options right now. If I thought I could put him in the hospital two days ago, I would have. I'm over that now. It was a temporary "hitting of the wall" as we runners say. When you "hit the wall" you have options. You can quit. You can ask a fellow runner to walk with you a bit. You can slurp an energy gel and keep going.
I've chosen to keep going.
The Health Nurse was here two weeks ago. My hubby told her he is fine. No symptoms. No pain. He said everyone can't belive he is even sick. He told the nurse that he could live on his own with no help at all. His version of reality and what I see are so totally different. It makes me feel a little crazy and frusterated. So, I take a deep breathe and grow more patience. I realise that he would like to believe that everything is ok.
This too will pass.
I wish there was a website that really honestly talked about the experience of dieing from cancer. Not just the "what to expect in the last few days". One that is honest about the months leading up to the last few days. I often want to write a book about this "cancer experience" . But I know as soon as this painful experience is over, I am going to want to move on and find the sunshine again, and not rehash this agony.
Filling my heart with peace, so I can do this all over again tomorrow, for as long as there is a tomorrow that requires this loving faithfulness that caregivers give.
The birds were singing this afternoon. Made me smie :-)
Hoping you had pause for a smile today.

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Reply by jorola

20 Nov 2014, 1:25 AM

I call it "having a moment" but in reality it is like me having a hissy fit just because i am tired and i just want our lives before the cancer It is not that i am stomping my feet and screaming for eveyone to see and hear, I do it in my head or when i am alone ( or start a new thread on here to vent about it) and have a good cry. Always seems to clean the soul of saddness, bitterness and resentment. Then i feel better and carry on the best i can. Tuna you are very strong, kind and patient and it is obv how much love and committment you have towards you hubby. May the birds sing for you every day.

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Reply by marstin

20 Nov 2014, 2:34 AM

Hi Tuna

I was reading what you have written about your husband fooling the nurse that he was okay. I'm sure in his altered state that he forgets that he has been in pain. Does this nurse come in regularly? If so, it might be good to indicate to the nurse that you need to speak to them without him listening. Len's nurses were for the most part very helpful and would make sure that my concerns were sent back to the doctor. We found ways to talk without him overhearing so that I could be honest about what was happening. Between the medication and the illness, the thinking isn't very clear for your husband.

I'm not sure what kind of things you would like to know about the final months. For each person it is so different. I have known people that look and act the same as ever then suddenly are gone. In our household it was watching the physical and mental deterioration happen fairly quickly over the span of about 2 months at home after being back and forth to the hospital for 4 months before that and seeming to be doing quite well. I can say that after 2 years the haunting memories are much easier to deal with and happen less frequently than in the beginning.

It's okay to have those times when you feel so overwhelmed and not sure if you can do this. You're only human and all of this is new to you and frightening. As strong as we all try to be, breakdowns are to be expected. We don't know the answers and for some reason tend to beat ourselves up for sometimes wanting to give up. You're doing the best that you can under the circumstances and are doing a great job of being caregiver.

HUgs,
Tracie

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