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Feeling so down...Dad back in hospital - this may be the end. 
Started by lilbear
21 Dec 2012, 4:01 PM
Hello,
I am desperately seeking some support as one of my worst fears seems so close to happening.  My Dad is in the hospital and I know it doesn't look good.  I am so scared of losing him at this time of year.  How do I go on and have a normal(?), happy Christmas for my kids? 
I don't want to ever lose him, but I know this rollercoaster of cancer is not fair to him either.  Sometimes, I feel strong and can discuss his situation openly, but as it gets closer-it gets harder.
I don't want to fall apart on my kids as they need the joy of the season too.  They have seen me a mess several times over the last 2 years because of my Dad's illness.
I am also very worried about my Mom's health and well being as she deals losing her partner of 50 years.   I am ever thankful that she lives with me and will not be alone.
We are all planning to go to the hospital Christmas Eve and then come back and try to have our "regular" festivities.  I think we need to do this, but I know leaving my Dad at the hospital will be so very hard.  I don't want him to think we are all leaving upset either, as it will only depress him.
My question is...have you experienced this and also, how do we cope?

Thanks,
Lilbear  
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Reply by moderator | modératrice
21 Dec 2012, 6:38 PM
Hi Lilbear,

This is a very diffcult time for you and your family for sure. But, something I heard on CBC radio yesterday tells me that you will find a way to cope. On the radio, they featured a classroom of 9 and 10-year olds telling their stories of their best Christmas. The first one was a young boy saying his best Christmas was spent in the hospital. It was his last Christmas with his grandpa and everyone was together and telling wonderful stories of Christmases past.

I'm sure it was also very sad, but the young boy remembers the stories and the happiness. As adults we focus a lot on the loss and how will the future be. I wonder if it would help to focus on the present and make things the best as they can be given the circumstances?

This Christmas will be like no other. Don't put too much pressure on yourself to uphold past traditions. Focus on this Christmas. Next Christmas you can re-examine what traditions to keep up and what new ones to start to put in place. Does this make sense? Does it help?
 
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Reply by MDuchesne
21 Dec 2012, 7:56 PM
Hi Lilbear,

It is such a hard time of the year to be going through something like this.  It's understandable that you won't be in the Christmas spirit, so it is ok to cut yourself some slack.  You'll have years to make it extra special for your children.  I hear what you are saying about not wanting "to lose it infront" of them.  Yet, they know their mother and will appreciate the difficulty you are having.  So, try not to worry about having to contain your emotions too much. 

If you have a supportive friend or counsellor, it might be a good idea to meet with someone to process all of the mixed emotions you are experiencing.  It's hard to balance grief with christmas joy.  Take extra good care of youself this holiday season and if that means just taking sometime to yourself, seeing a good friend or skipping out on an activity; just do what you need to do.  I hope you can enjoy as much time with your father as possible and reflect on all the good times and the memories.  It sounds like the two of you share a VERY special relationship, what a very unique gift to be able to reflect upon at this time of the year! 

Sincerely,  Michelle
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Reply by lilbear
22 Dec 2012, 3:14 PM
Thank you for your responses.  I find it all so confusing.  One day he seems so bad and then the next he seems so much "brighter".  They are draining fluid from his gallbladder and I guess they won't know until after that ends if there are stones and/or cancer there too?  We just don't know what to make of it. 
The doctors and nurses all say he keeps them guessing!   
One of the worst things is the pressure we all feel (especially my Mom) to have him back home. The hospital administrators meet every morning with the palliative nurses and try to push patients to get out.  The nurses have told my Mom that.  There is no possible way he can come home...he cannot even walk without supervision.  It takes 2 nurses to get him up to the washroom!  We wouldn't even get him in the car....how is she possibly supposed to take care of him at home?
Sorry, I know I started talking about Christmas...but I am just frustrated and feel so helpless. 
I just wish somebody knew what was going to happen, so we could know...

Thank you again and God Bless!    
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Reply by moderator | modératrice
24 Dec 2012, 3:46 PM
Hi Lilbear,

I'm dashing off just a quick note to let you know that I am thinking of you. How are things today? 
I'll write more soon.
Colleen 
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Reply by MDuchesne
24 Dec 2012, 5:16 PM
Hi Lilbear,  it probably all seems like a bit of a rollercoaster ride at times.  I know doctors and nurses like to see people at home with thier families whenever possible.  Unfortunatley this is not always possible.  As your father will have to remain in hospital, I hope you will be able to bring a little bit of Christmas to him.  I don't know the specifics with your father, but I know that sometimes individuals are provided a pass for a few hours to be with family.  Perhaps if he is having a good day, this may be something you can explore. 

Michelle
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Reply by moderator | modératrice
30 Dec 2012, 5:03 PM
Hi Lilbear,

I've been thinking about you. How did Christmas work out? Did your father stay in the hospital or come home?

You are so right that these sudden changes - doing better and then doing poorly again - can be very confusing. This is actually a fairly common phenonemon. The Virtual Hospice team explains it in the article "When Death is Near". I've copied this excerpt here:

Sudden improvements
-- "Patients whose health seems to be deteriorating can also surprise family and friends with their ability to suddenly improve. This improvement may be an indication that a new problem has resolved itself. For example, a person with a life-threatening illness may have developed a minor viral infection such as a cold or a mild flu. Alternatively, they may have been experiencing a "down day," just as we all do at times, where for no obvious reason there seems to be no energy. For someone who is frail, however, the “down days” can result in a worrisome drop in function, sometimes to be followed by a surprising improvement the next day, when for some reason their energy fluctuates back up. People who are in healthy physical condition have the reserve to draw on to buffer these fluctuations, so the changes do not look so striking." -- 

Is this what seems to be happening? I look forward to hearing from you and to find out how you are doing - and your mom. How she's doing?

Colleen
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Reply by lilbear
31 Dec 2012, 12:02 PM
Hi Colleen,
Christmas went better then we thought.  He was/is still in the hospital, but seemed in good spirits and enjoyed having the whole family there.
I have read that article and at times I can see that happening exactly.  I have heard of people going along quite poorly and then suddenly having what seems like a total rally...to the point that family thinks he must be okay andeven "cured", only to be followed by complete failure/death.  My Dad seems much more subtle almost.  We never know what to expect.  Some days he is sitting up in a chair having lunch and is almost "normal" to interact with  and other days he lies in bed and seems to have no energy at all.
 They gave him another blood transfusion at Christmas.  Will they keep doing that if they think he's near death?
I am just very concerned about what the hospital will do.  
Will they try to send him home?
We cannot take care of him like this.  It will end up killing my Mother fromthe physical demands and stress.
The thing is, he would not likely even be able to make it into our car or back out once he got home.
We'd end up calling the ambulance right back to get him.


 
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Reply by lilbear
31 Dec 2012, 12:05 PM
Sorry, 
New tablet....cut my sentence off.
Anyhow, I think thats all for now.  I appreciate you keeping in touch.

Lilbear 
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Reply by MDuchesne
31 Dec 2012, 3:15 PM
Hi Lilbear, I'm glad to hear that things went well for your family over xmas!

Has your father been assessed by an Occupational Therapist?  If not, this may be an avenue that you want to explore in terms of his level of strength and function.
It is my understanding that patients usaully have to have enough strength to be able to transfter themselves.  However, your father sounds like he will still require much support which is usually provided by homecae workers.  Again this will depend on the assessment by the O.T. and by the level of services available in your community. 

It could be that your father may require long-term care.  That means that he is not strong enough or well enough to return home but does not necessarily need to remain in hospital.  A long term application would need to be completed.  Most homecare departments have a longterm worker who can assist with this process or sometimes it can be done with a hospital social worker.  Again this would depend on availablity in care homes in your area.  Sometimes the wait can be very long so it may be worth thinking about now and getting the paper work started. 

Has your father done any advanced care planning?  Does he have a Health Care Directive in place? 

So much to think about.............

Sincerely,  Michelle
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