Hi my Dad a extreme liver failure, heart failure and COPD.
Denise
X
Hello…
My dad passed with heart failure and I went through similar with the medical team. I did lot’s of my own research as they could not give me answers on timescales and what to expect which is so very distressing for all of you. With heart failure it is very complex and unpredictable especially alongside other conditions which dad also had with kidney failure and they will not commit to anything. However you all need support and when your dad can no longer walk unaided he is at high risk of a fall which you and your mum would not and could not be expected to manage. YCan you work with your GP for him to put pressure on?
Sadly with the NHS you have to push, shout and scream to get anything done, pressurising them which on top of everything else you are going through is stressful and upsetting.
Do you have other family members that can do this for you and give you both a break as this time is crucial for you and your mum and dad to spend quality time together, surrounded by peace and love.
My heart goes out to you, here if you need to talk
Lyn
xxx
Hi Denise,
As Lyn says these conditions, especially when put together, are highly unpredictable with each individual case being different.
We had a tough battle getting medical professionals to agree to what we wanted. Lyn is right saying that you need to shout the loudest to get the response. Continuing Healthcare is a bit of an unknown entity to those of us who are not used to the system.
Have you been given details of local hospice services? Many provide Hospice at Home care which may be useful.
I am so sorry that you are experiencing such a lack of support at a time when you need it most. I am not an expert in this area but hopefully someone on here will be able to advise you on the best course of action. I would suggest putting in a complaint through your Local Authority as the statutory information on end of life care states that everyone is entitled to a ‘good’ death (meaning that they have the choice about what happens).
I am thinking of you and your family. Chat on here as much as you want and we will all try to help.
Caroline x
Hi Denise
Just thinking of you and hoping you are ok xx
Hi
I am doing okay, my Dad has now got a catheter fitted, we have had some very strange behaviour, after 26 days of not eating anything he decided to have a little bit of dinner on Saturday and Sunday.
xx