Counter intuitive emotions

[Duggies-girl]

Many of us can totally understand your last sentence I too felt like that

I know, I feel sad for thinking such things but I consider the other option is far worse. I feel that I am building him up in readiness for morphine patches and transfusions and it just seems wrong but I can't see any other option at the moment, He had 4 milkshakes and some ice cream before midday today. He is very happy and feels fine. He doesn't look fine, he is very frail and shrunken with no memory of yesterday.

Thing is other than the cancer and dementia and the frailty he is healthy. I have never known dad to be ill, not even a cold or sore throat so he is very likely to go the course with his cancer.

I am fighting to make things nice for him but none of us can win here and I just don't want him to suffer.

I will say another little prayer tonight even though I don't think there is anyone there to listen but I suppose it is worth a try.

 

[Jezzer]

I know, I feel sad for thinking such things but I consider the other option is far worse. I feel that I am building him up in readiness for morphine patches and transfusions and it just seems wrong but I can't see any other option at the moment, He had 4 milkshakes and some ice cream before midday today. He is very happy and feels fine. He doesn't look fine, he is very frail and shrunken with no memory of yesterday.

Thing is other than the cancer and dementia and the frailty he is healthy. I have never known dad to be ill, not even a cold or sore throat so he is very likely to go the course with his cancer.

I am fighting to make things nice for him but none of us can win here and I just don't want him to suffer.

I will say another little prayer tonight even though I don't think there is anyone there to listen but I suppose it is worth a try.

I am not "religious", nor a churchgoer but because of things I've experienced in my life, I do believe your prayer will be heard.

You are being awfully hard on yourself, really you are. As I see it you are a caring, loving daughter just trying to do what's best for your dad. If my mum were to ask for ice cream, would I give it to her? Absolutely. No question. Your dad still enjoys this so I think it would be cruel to deny him. In mum's case she no longer wants food and today didnt take any fluids. This is a new and sad development but a sign that because her body is shutting down, it has no need for them.

You are in an awful situation but I think all you can do is take each day as it comes. Who is to say what should and shouldnt be done? Certainly not me.

Please, please be kind to yourself. You are doing everything that you can and you are being very brave. Your dad, if he could, would say how proud he is of his daughter, I'm certain.

With Love. J xx

 

[Lindy50]

@Duggies-girl , can I second every word @Jezzer has just said? I too believe that your prayer will be heard, even if not answered in a way that we would necessarily understand. And like Jan, I am sure your dad appreciates and is proud if you.
You are meeting your dad's needs and following his wishes, @Duggies-girl, heart wrenching though it is for you. I wish I could do more than send you massive (((hugs))).
With love
Lindy xx

 

[Duggies-girl]

I am not "religious", nor a churchgoer but because of things I've experienced in my life, I do believe your prayer will be heard.

You are being awfully hard on yourself, really you are. As I see it you are a caring, loving daughter just trying to do what's best for your dad. If my mum were to ask for ice cream, would I give it to her? Absolutely. No question. Your dad still enjoys this so I think it would be cruel to deny him. In mum's case she no longer wants food and today didnt take any fluids. This is a new and sad development but a sign that because her body is shutting down, it has no need for them.

You are in an awful situation but I think all you can do is take each day as it comes. Who is to say what should and shouldnt be done? Certainly not me.

Please, please be kind to yourself. You are doing everything that you can and you are being very brave. Your dad, if he could, would say how proud he is of his daughter, I'm certain.

With Love. J xx

I know this jezzer and thank you for your kind words. I think the hospital visit has just made me very emotional at the moment. It is the realisation of what is to come that has upset me. Of course I will carry on giving dad his ice cream and shakes but it is heartbreaking.

I am just going through a low period I suppose but it is hard especially as dad is so smiley and doesn't have a clue. I keep reading of others sadness when the time comes and feel that I may not be as brave as others when I know I will have to be.

I have been following your own post and you are truly inspirational coping with this especially as you have not been well.

I thank God for talking point even when I don't believe. Odd but I do for some reason.

 

[Duggies-girl]

@Duggies-girl , can I second every word @Jezzer has just said? I too believe that your prayer will be heard, even if not answered in a way that we would necessarily understand. And like Jan, I am sure your dad appreciates and is proud if you.
You are meeting your dad's needs and following his wishes, @Duggies-girl, heart wrenching though it is for you. I wish I could do more than send you massive (((hugs))).
With love
Lindy xx

Thank you Lindy50 I am sure I will feel better about it in a day or two. I have done ok til now with just the odd blip but my emotions have got to me over the last day or so. Dad is easy to care for but it is just so sad.

 

[Jezzer]

Bless you and Thank You but I don't feel inspirational! I often feel I'm not coping and the tears are never far away. Easy to say but try not to dwell on the future. As for being brave, you are already being just that! You are understandably feeling very emotional and this is preventing you from seeing in yourself what the rest of us see and that is you are amazing and doing incredibly well! Much Love and Hugs xxxx

 

[Gordy]

Hello there. My mum is almost identical in description to yours. She just sleeps and has gotten so thin, NH asked GP to visit today. Unfortunately I wasnt there as was at the hospital. The one day I cannot be there! The nurse suggested supplement drinks but he said no. He has also taken her off two of her meds as they wont help her now. He said all they & we can give her is "lots of TLC". My brother and I love her so very, very much but seeing her like this is dreadful. The GP was apparently very kind and patient but she didnt wake up at all during hi s visit. We believe he has made the right, compassionate decision. You have my sympathy. Isn't this an awful, cruel thing? Sending Love and Hugs to you. It tears us apart, this wicked disease. J xxxxxx

Thank you Jezzer. Had a call from the NH today as GP had been in and seen mum, he has done end of life paperwork and prepared prescriptions for morphine etc so they have them ready if she needs them. We went in after work tonight and it looks like her swallowing reflex has now all but gone, I tried to give her some sips of water but she just held it in her mouth and then coughed it out. I'm scared she will choke so have asked them not to force the issue, she is obviously near the end now and I just want it to be calm and peaceful for her. Yes, this is a cruel cruel illness, taking our loved ones in such an undignified way. I feel for you so much, seeing your mum in this way is horrible and it is very hard to make these difficult decisions. Sending you strength tonight xx

 

[Gordy]

Hello @Gordy
My mum also is in a similar situation to yours. She in unable to do anything for herself and is miserably unhappy most of the time. She barely eats and weighs less than six stone. Yet, she manages to shout out 'help, help' and 'hello, hello' for hours every day. It's pretty much her only activity and she doesn't expect any response - often continuing even when I'm sitting with her and giving her all the attention I can.
Anyway.....to get to your point.....at her care plan review the issue of antibiotics arose. I noticed that her care plan said she was to be treated with antibiotics whenever the need arose. I questioned this as I really don't want her to be kept alive 'artificially', as she is so very unhappy. In the end I spoke to the GP and agreed she'd be treated for comfort, eg if she has a UTI and is uncomfortable, but that they would not give repeated and strong doses if she had what he called 'an overwhelming infection' like pneumonia.
I was happy with this outcome but like you, I felt that the staff were shocked that I did not argue for all possible means to be used to keep mum going I think perhaps it's useful to look at it from their point of view. They have to regard every life as precious in order to do their very difficult jobs. Of course I agree with this, my mum could not be more precious to me, but like you with your mum, I don't want her suffering to be prolonged.
I hope this makes some sort of sense...... I feel guilty saying it even on TP
I hope your mum is as comfortable as she can be.
(((Hugs))) to you.
Lindy xx

It makes total sense Lindy, the guilt is awful isn't it? You know you are doing the right thing but it's so hard and you feel like you are being judged. Reading your post felt so familiar, I think it helps just to know that we are not alone in having to make these impossibly hard decisions. You feel like you're the only one, but of course you're not, and knowing that really means a lot. I hope the suffering for our mum's and their daughters doesn't go on for too much longer xxxxx

 

[Jezzer]

Thank you Jezzer. Had a call from the NH today as GP had been in and seen mum, he has done end of life paperwork and prepared prescriptions for morphine etc so they have them ready if she needs them. We went in after work tonight and it looks like her swallowing reflex has now all but gone, I tried to give her some sips of water but she just held it in her mouth and then coughed it out. I'm scared she will choke so have asked them not to force the issue, she is obviously near the end now and I just want it to be calm and peaceful for her. Yes, this is a cruel cruel illness, taking our loved ones in such an undignified way. I feel for you so much, seeing your mum in this way is horrible and it is very hard to make these difficult decisions. Sending you strength tonight xx

Hello @Gordy Apologies - I should have responded last night; came for "half an hour's rest" on the bed last night and have woken 4 hours later - whoops. It is good - that is not really the right word I know - that the necessary medication is available for your mum if she should need it. That's not happened with mum yet and I want to speak with the GP who saw her as I have a few questions I wish to ask him. Thank you so much for thinking of me and sending strength at such a difficult time for you. Someone said to me on Sunday "she's had a good innings" and I wanted to say "she may be 90 but she doesn't deserve this and do you think reaching this age makes it OK?!" .Why oh why are some people so insensitive ? Yes the decisions we have to make are dreadfully difficult. Before mum became ill we talked about "the inevitable" never thinking Dementia would come along and totally destroy her final years. She definitely never wanted to be like this, hoping instead to go quietly in her sleep as her best friend did. It was not to be.
You are in my thoughts, as is your dear mum, and I also send you strength at this awful time and hope that your mum is soon released from this cruel and so undeserved illness. With Love Jan xxx

 

[Gordy]

It makes total sense Lindy, the guilt is awful isn't it? You know you are doing the right thing but it's so hard and you feel like you are being judged. Reading your post felt so familiar, I think it helps just to know that we are not alone in having to make these impossibly hard decisions. You feel like you're the only one, but of course you're not, and knowing that really means a lot. I hope the suffering for our mum's and their daughters doesn't go on for too much longer xxxxx

Hello @Gordy Apologies - I should have responded last night; came for "half an hour's rest" on the bed last night and have woken 4 hours later - whoops. It is good - that is not really the right word I know - that the necessary medication is available for your mum if she should need it. That's not happened with mum yet and I want to speak with the GP who saw her as I have a few questions I wish to ask him. Thank you so much for thinking of me and sending strength at such a difficult time for you. Someone said to me on Sunday "she's had a good innings" and I wanted to say "she may be 90 but she doesn't deserve this and do you think reaching this age makes it OK?!" .Why oh why are some people so insensitive ? Yes the decisions we have to make are dreadfully difficult. Before mum became ill we talked about "the inevitable" never thinking Dementia would come along and totally destroy her final years. She definitely never wanted to be like this, hoping instead to go quietly in her sleep as her best friend did. It was not to be.
You are in my thoughts, as is your dear mum, and I also send you strength at this awful time and hope that your mum is soon released from this cruel and so undeserved illness. With Love Jan xxx

Please don't apologise for goodness sake, you are allowed to rest! Reading all the replies I've had, there is a very common theme that we all want the same for our loved ones but can't give it to them. A quiet, peaceful, dignified end. The same as you would do for a much loved dog or cat but can't do for people and I totally get why that is, it would be open to abuse by unscrupulous people, but it is so hard when you only have the best interests of your mum or dad at heart. I guess we can take strength from the knowledge that we are all in this together and understand what each other is going through. Lots of love xx

 

[Gordy]

Oh dear @Gordy I get what you are saying and I agree with you. It is so hard and I am in a similar position. My dad, 88 years old has advanced alzhiemers and terminal oesophagul cancer and here I am feeding him up to give him some strength. I am doing well according to the consultant as he has put on about 10 pounds since his last appointment. Dad drinks 7 or 8 of these shakes every day so they do work and he drinks soup with cream in and this morning he had ice cream with cream on top for breakfast. So why do I feel that this is pointless, dad would not eat if I didn't put on a plate and give it to him. He says he is not hungry or that he is full up already, probably because he has a big tumour filling half of his stomach. This makes me feel depressed and guilty but still I give it to him.

I feel like I am feeding him up so he will last longer but what is the point of that. At the moment he is pain free and quiet happy and completely oblivious of the fact that he is ill. It is a fact that the longer he lasts the worse it will be for him in the end so every night I pray that he will pass away in his sleep. The torment of this is killing me while he is as happy as Larry. They are talking now of a possible course of palliative radiotherapy some time soon and possible blood transfusions if he becomes anaemic and morphine patches for pain control. It is all becoming a bit too much to bear. Dad still functions in his own home because I devote all my time to him. He is no trouble really, he is very pleasant and a real gentleman. He is also a walking skeleton and all he wants to do is sit in his chair and drink milk shakes. I don't think he has the strength to do much more than that as today's hospital visit really took it out of him. He does still ask for the ensure milk shakes because he likes them and they are nice and cold for his throat but what the hell am I building him up for. I will keep giving them to him as long as he still wants them but it is torture watching him like this.

It is awful this disease. Every morning I go down dads and often he is not up yet and when I go in all the blinds are closed and I know he is still in bed and then he calls out to see if it is me and I don't know whether I am glad or whether I want to cry.

My heart goes out to you, this is such a cruel disease for patients and their families. You do what you know to be right for you and your dad, that is all that matters. We are all in this together, sending you love and strength xx

 

[Gordy]

I second this!!

One of the most difficult and bravest things we all have to is let go when the time is right. What is the point in prolonging a life of suffering?
Well done @Gordy for making this brave decision. No one should judge you for doing the right thing for your mum.

Thank you so much for your understanding, it means a huge amount x

 

[Gordy]

Such heart breaking posts, and so honest. @Gordy, I completely agree with your decision, I believe it is the hardest, but absolutely the right and loving thing to do in your mum's interests, and I suspect the same decision will arise for me in the future. My mum already is reluctant to eat, but is still fairly independent. My husband and I have just been discussing your posts and want to send you all our support and love.

Thank you so much for that, it means so much xx

 

[Gordy]

Can I just say a huge thank you to all of you who have replied to my post. I felt very alone before but now I don't. I wish to God that none of us were in this horrid situation. We are stronger together, love and strength to you all xx

 

[Jezzer]

I'm with mum and just having a coffee while she is washed and changed into a clean nightie. She is sleeping as usual and when I took hold of her hand, she pulled it away. Not sure wht. She is very pale but there is no sign of pain or distress. I am talking to her (she's probably thinking "Oh do shut up!!), just telling her all sorts. Not drinking though. I know you can go without food for a while but not fluids. @Gordy - I'm so glad you don't feel alone. I too wish none of us were in this awful situation but I agree we are stronger together. TP is a wonderful forum. Thank you all for being here. With much Love xxxx