Slowly loosing my Dad

[Val3]

I have posted a couple of threads before but not really had time to visit this site much due to visiting my Dad in his nursing home and try and carry on with my own life.

The last time I was on here I said my Dad had been discharged to a new nursing home after being in hospital with a severe water infection. Unfortunately my Dad is now back in hospital with aspirating pneumonia. I have been told by the consultant this is due to food and drink going into his lungs without our knowing.

We were told on sunday when he was admitted he had 24 to 48 hours to live but he is still with us.

I thought I would post this thread as I find some comfort in talking about this. He is on what the hospital call 'the pathway' which I have heard someone mention before on here. I know he is not going to recover as if we give him any food or drink it will carry on going into his lungs and they cant put him on a drip with fluid as I have been told his lungs will drown.

I keep having feelings of guilt over what is happening, that I cant give him anything to drink, although I have been told he can have it if he wants it, which I was able to do the other day on a sponge and he seemed to want it. Now he is too weak to be bothered with anything.

It just seems barbaric to leave him like this, its like starving him and dehydrating him to death!

I have logical moments when I think this will just keep happening anyway if he carrys on being given drink or food and other times when I feel in dispair I cant not give him at least something to drink.

You would think in 2009 there would be a more humane way of dealing with this.

I am now just hoping he is comfortable and in no pain as he is unable to let me know if he is. Also that he passes away peacefully soon as no-one should have to suffer like this, especially my Dad as he is such a lovely, caring thoughtful man who looked after my Mum before she died.

I would like to hear if what experiences other people have had like this.

Val

 

[Grannie G]

Hello Val

This is out of my experience, but I would just like to wish you the strength to see this through, and hope your dad is feeling no pain or discomfort.

 

[Skye]

Dear Val

I watched my mum die of pneumonia like that, and I know what you are going through. It is agonising watching someone you love drowning like that.

I went through a similar situation with my husband at New Year, fortunately he had the strenght to recover.

It sounds as if your dad is comfortable, and that is a blessing. All you can do is be there for him, hold his hand, and let him know he is loved.

My thoughts are with you.

Love,

 

[twinone]

Dear Val

My husband was put on 'pathways' when he was taken into hospital with an infection the last four days of his life.

He wasnt allowed anything to eat or drink, the nurses said that he would not be able to tolerate it. I along with my sister and 4 of Steve's friends sat with him all the time on the last day and he kept asking for 'coffee'. It distressed us all that he could not have anything.

I was told that 'pathways' would be peaceful (it is for most people) but Steve fought to the last minute, it still upsets me.

I am so pleased that your dad is peaceful and will be thinking of you during this distressing time.

Lots of love
Janet

 

[Tender Face]

Dear Val - first of all, my thoughts are with you at this time ....

As part of my mother's palliative care plan the risk of 'aspiration' was discussed several weeks before end-of-life 'Pathways' was instigated ..... (mum had physical issues around swallowing as well as dementia related food problems) ... ....... and it was agreed by medics and myself that any morsel of food or drink she wanted was hers to savour for as long as she was able .... essentially any snippet 'quality of life' for as long as she could enjoy it. If that was half a teaspoon of ice cream, then so be it ....

In her final days, she had little more than mouth swabs and ointments to keep her lips and mouth as moist as possible ...... but if she demanded a 'tot' of something she got it .....

'Palliative care' took a lot for me to understand ....... and the balance of 'risk-taking' to the very end a quite incredulous experience ..... accepting that mum was going to die whether or not - well - she had everything she demanded for as long as she could ...

It was a painful experience to be asked to swab mum's mouth or to allow her no more than a few drips of iced water from a syringe ... and I am grateful to the Nursing staff they allowed me to take over some of that 'care' in her final hours and days.

Those moments are so tragic and yet remain so precious .......

I wish you all the love and strength in the world to get through this time. Karen, x

 

[JPG1]

Dear Val,

My heart and thoughts are with you, because what you are dealing with now is so very difficult, I know.

Aspiration pneumonia is unbelievably hard to cope with, for everyone involved. You will need to dig deep into your own inner resources to be able to handle it all, and it will sap your strength. Day by day. I am sure you will need support, and I hope you will get that support.

We were given advice by the medics about possible means of intervention, possible outcomes, ways of being involved and that really only meant offering sips, mere droplets of water, cleaning the mouth area, moisturising lips, hands and anything else that we could think of. I gave a very gentle ‘manicure’, which was only cleaning, moisturising and stroking. And probably it was more helpful to me. We talked and talked and talked. As if tomorrow would come and the sun would shine again.

It was our way of being involved at the end of a very special life; our way of not wanting to let go without doing everything we possibly could to make the end of that life as comfortable as we could.

We did as advised for 3 weeks; such was the strength of her ‘will to live on’. Even though we knew then that she was not likely to live long.

It was very painful, but it allowed me precious moments of final contact, and now I am so grateful to the hospital nursing staff who encouraged me to say that close final farewell.

With my very best wishes,

 

[Val3]

Thankyou so much for all your replies, this has helped me greatly to know I am not on my own.

It has been another difficult night, I intended in leaving earlier tonight because my Dad had been comfortable but before i left the nurses came give my Dad one of his 4 hourly turns. Following this he was agitated and coughing but he is so weak and his throat so dry it sounded so pathetic and like a whimper.

It was so distressing I had to stay longer to make sure he was settled and ask the nurses to try and give him something to help.They gave him another shot of diamorphine. I must say they don't leave him too long and they have been fantastic so far.

Eventually he seemed more settled but I think this may keep happening as he deteriorates. I don't know how I can watch this day after day but I can't not go.

JPG1, I dont know how you had the strength to carry on for 3 weeks, I really hope my Dad slips away peacefully sooner than that. I am sure if I have to I will, because he is very special.

I have tried ice-cream and his favourite apple juice but I can't seem to get him to take anything. I am told now he is in a coma like state. I have given hand massages, as advised by my cousins who went through a similar thing with my Dads brother.

I am someone who needs to talk about these things as they happen, so thanks again for all your support.

Val. x

 

[Amber 5]

My thoughts are with you

I'm so sorry to read of what you and your dad are going through. I can only imagine how hard it must be for you - but you must hold on to the fact that your being there and the loving care and attention you are giving him will be appreciated and a great comfort to him even though it may not seem that way to you right now.
Loving thoughts going out to you both.
Gill x

 

[patradnor]

Dear Val,I am thinking of you and your dad and sending love and hugs to you at this sad time. Love Patx

 

[Mameeskye]

Val

The final few days are so very very hard. The uncertainty is so hard and you hate the thought of your loved on suffering at all.

Courage and strength be with you and your family.

Love

Mameeskye

 

[Tender Face]

Dear Val

Just checking in to see how you are. When people here say they are thinking of you - it really does happen, I know.

Just one thing if it's any comfort: I recalled one of mum's doctors discussing her 'end of life care' and stating quite simply 'It's harder for those letting go.'

My thoughts and prayers are with you,

Karen, x

 

[Cate]

Dear Val

I am thinking of you too. I stayed with mum during her last week of life too, the nights were the worse, only my thoughts to keep me company and mum fighting for every breath.

They say that the hearing is the last thng to go, and even though mum was in a coma I just kept talking to her, it helped me too, and I do hope that mum could hear me telling her how much I loved her, and that my dad was waiting for her.

This final journey is so very hard, but somehow you will cope, you just do because we love them so very much.

Talk to us as much as you need to, you and your dad are in our thoughs and prayers.
Love
Cate xxx

 

[suze]

hope you took comfort

I hope, Val, that Cate's words are a comfort to you: they are to me. My mother is in the end stage of Alz and Parkinsons and not swallowing well, bedridden, sleeps most of the time. We are told either days or weeks,but probably the latter....the waiting is so hard, isn't it?
God bless
Suze

 

[JeanD]

Dear Val, I am so sorry you are going through this. I lost my dad in December the same way. I could not believe there were not better ways either, but everything I read said what we were going through was for the best.

Once, at the beginning of the end-stage, I decided to hang it all and let dad have a sip of tea, as he was constantly asking for it.I thought it could hardly make anything worse. I damn near choked him. Had to fetch the nurses to sort it. So now I understand why they will not try it. It was very distressing.

Towards the end he was neither hungry or thirsty, and I believe he was not suffering. I talked to him for hours, and would not have missed those days for the world. I am sure he could hear me, once he smiled when I said something funny, and he cried when I told him I loved him. Only 1 tear, too dehydrated for more. That was the day before he died.

I will be thinking of you, take care , love Jean

 

[Cate]

Dear Suze

I am so sorry to hear you are going through this final journey also with your mum. It is so very hard, just having to watch and wait.

There really was only two things I could do for my mum in those final days, to arrange for the Priest to give Last Rites, something which I know would have been very important to mum, and to talk to her constantly day and night. When I was giving my voice a break, (and having a much needed cigarette), one of the nurses would come in and sing or read to her, I felt it so very important that she never felt alone.

Years ago when I was nursing and sat with a patient who was not expected to last the night, a colleague who had been a nurse for years came in to relieve me for a break, and she opened the window. I asked her why she had done that, and she told me to help the Soul on its way. At the time I thought it a strange thing to say and do. Mum’s final night I remembered the nurse doing this, so I opened mum’s window, and in some very strange way I thought I was doing something for mum, helping her on her journey to my dad.

You and your mum are in my thoughts and prayers too.

Love
Cate xx

 

[Cate]

Hi Val

Just wanted to let you know Im still thinking of you and your dad.

I hope dad remains comfortable, and you are getting some rest.

Love
Cate xx

 

[Val3]

Thanks for all your words of support

You have all helped me get through the last few days greatly but unfortunately my wonderful caring Dad finally passed away, hopefully peacefully, yesterday morning at about 5.30am.

I have found today very difficult, heartbreaking as I was not with him when he passed away.
All the previous days in hospital, when I had not expected him to last the night, I had stayed until the early hours. But the one night I left earlier than usual and decided not to return, I don't know why.
He had been breathing more rapidly, my brother had given him some milk, he felt he needed to try something as he was not accepting things very well. But my Dad had then settled again after the nurse gave him an extra shot of diamorphine and other medication to help. My sister in law had kept me company and we had been just chatting. I left with her, said told him I loved him as always and to have a good sleep. I left his music playing so he wouldnt feel alone.

I got a call in the morning and I knew then because when I asked if his breathing had changed, the nurse who phoned just said there had been a change.

I have had guilt for one reason or another since he had his stroke in March and now I am struggling not to feel guilty again!

I don't know why I didn't stay, I had felt when I left I should go back but didn't. I think maybe because he had been given 24 to 48 hours at the beginning of the week your sort of lulled into a false sense of security that when that deadline passes, you have more time left.

He looked asleep when I got there and I think he had not long gone. I just hugged him, stroked his hair and told him I loved him. I really hope he could still hear me. I had to force myself to leave otherwise I would still be there now.

I know everyone says that very often loved ones pass away when your out of the room but I told him I would always be there.

I know he knew I had been there all week most of the time, I had put cream on his hands, rubbed his back and stroked his hair and I am trying to find comfort in that.

All the nurses said they knew he was loved by the way I had made his hospital room more homely.

I just miss him so much already and but I didnt want to see him suffer any more.

Thanks for listening, thanks Cate for your message

Val x

 

[Grannie G]

Dear Val

I`m so sorry.

 

[JPG1]

Dear Val,

Dear Val

I am so very sorry to read that your Dad passed away yesterday.

The love you had for your Dad shows in your words, and you really were always there for him.

Please try to take comfort from knowing that he knew the strength of your love for him.

You will be in my thoughts at what I know is a very difficult time for you and your family.

 

[julieann15]

So sorry Val to read your dad has passed away-both my parents passed when I wasn't there after long vigils by their bedsides by myself- It was as though they waited for me to go in order to leave this world- hopefully for a better one? My MIL's husband waited for her to leave the room to make a cup of tea for the nurse before going over(it was MIL's birthday- he hung on to that specific day??)
My thoughts are with you and your family

Julie xx