Dad’s Diagnosis - Feeling helpless :(

[Floofmom]

Hi Sonia1, just wondering how you are and how your Dad is doing x

[Sonia1]

22 hours ago, Floofmom said:

Hi Sonia1, just wondering how you are and how your Dad is doing x

 

Hi Floofmom

 

Dad’s symptoms were not being controlled and he was in a lot of pain, experiencing a lot of secretions which resulted in plenty of vomiting.

 

I have lost count of the number of call outs to the DNs we have made for stat doses to be administered as the syringe driver simply wasn’t doing enough. It was a constant battle and endless waiting.

 

Last night was awful so this morning we made the decision to get him admitted into the hospice as an inpatient for symptom control. Whilst this was never what anyone (including dad) planned or even wanted I guess, I felt like our ‘plans’ could not take precedent over the agony dad was going through. I cannot tell you how awful it was and how helpless we all felt. We  want him to be comfortable and pain free at this stage, not see him suffer. He’s already had 3 months of suffering. 

 

 The hospice doctor said it seems dad is definitely approaching end of life and we are looking at days :(( 

 

They have allowed for all of us to stay at his bedside so me, my brother and sister along with mom are here. It breaks my heart to see my mom so sad, she is really struggling to accept this is the end I guess. 

 

The nurses and staff here are brilliant and a part of me wishes we should have made this decision sooner to save him from the pain he suffered in the last few days. 
 

I am watching dad like a hawk waiting for any signs which might mean this is it but for now he seems settled / heavily sedated almost. 
 

I feel so numb at the moment - it’s like I have run out of tears to be honest. 
 

How are you doing? How is mom doing? 
Did the liquid for her iron deficiency work? Thank you for messaging xx

 

 

[Floofmom]

Hi Sonia1,

It sounds like you have made the best decision for him given what he is going through.  I think rather like birth plans, there has to be a degree of flexibility depending on how things go.  For my part, my mum has requested to end her time in the hospice and doesn't want to die at home.  One of the reasons for this is that she feels she will have better access to medications to make her more comfortable.  At the point where she ended up in the hospice for 3 weeks in June (we are now in August) her pain levels were out of control but they managed to get things back on track and she returned home.  It's good that the hospice staff are being honest about the length of time that they think your Dad has.  It must be extremely difficult to hear, but does allow you all time to be with him.  Hopefully he is more settled and the pain is manageable now.

This anticipatory grief is horrible.  When we had the diagnosis it felt like the bottom had dropped out of my world, then after a month or so everything became focussed on getting through each day, symptom control etc.  It's almost like I can forget the endpoint but I know it's there.  I think when I am told "days rather than weeks" it will suddenly hit me in the face again.  But your journey has been so fast, I can't imagine how topsy turvy your world has become.  

My mum is very breathless and it is making her a bit panicky.  They are going to try her on a drug to help with that.  I suspect it's anti anxiety drug as they said they can't really do anything about the breathlessness. It must be horrible.

Please know that I am thinking of you at this time and hope that your Dad stays comfortable and pain free xx

[Sonia1]

For all those who were following this thread, my father took his final breath on 2nd August just before midnight.
 

I cannot express in words the sadness I feel and how empty my life has become. 

 

I take comfort in the fact he is no longer in pain and is finally resting in peace but I miss him terribly  

 

Thank you Floofmom for all your support and comforting words. I will be sure to follow your thread and check upon how mom is doing. X

[Floofmom]

I am so sorry to hear your sad news Sonia1.  I know there is nothing anyone can say to take away the pain you are feeling right now but please know that there are people out there thinking of you and wishing you and your family well during this very difficult time. Sending you love x

[broju]

I'm so very sorry, Sonia1.  I know there are no words that will help but as Floofman has said there are many who will have followed your posts and will be thinking of you and your family just as I am.  Take great care of yourself and your family. XX  

[Sonia1]

On 8/6/2022 at 11:01 PM, Floofmom said:

I am so sorry to hear your sad news Sonia1.  I know there is nothing anyone can say to take away the pain you are feeling right now but please know that there are people out there thinking of you and wishing you and your family well during this very difficult time. Sending you love x

 

On 8/7/2022 at 1:34 PM, broju said:

I'm so very sorry, Sonia1.  I know there are no words that will help but as Floofman has said there are many who will have followed your posts and will be thinking of you and your family just as I am.  Take great care of yourself and your family. XX  

Thank you both for your kind words x

 

It has been almost 11 weeks since he’s passed I would love to say time is a great healer but in all honesty that seems to be far from the truth.

[Emfems]

On 10/17/2022 at 9:33 PM, Sonia1 said:

 

Thank you both for your kind words x

 

It has been almost 11 weeks since he’s passed I would love to say time is a great healer but in all honesty that seems to be far from the truth.

Hi Sonia, I am so sorry for the loss of your dad. My dad died when I was 15 and now my mum is suffering from

this awful disease. I just wanted to say thank you to you and Floofmum for taking the time to share your experience. My mum is 56 and was diagnosed officially last month. She’s been in hospital for the last week and has a drain in and is on a syringe driver as well as oxygen now and it feels like my whole world is falling apart. This disease is just absolutely horrendous as it takes lives so quickly and completely turns families lives upside down. Again, I’m so so sorry for your loss. Thinking of you. X