Mixed dementia

Alice01 5 years ago

2 replies

Hi. My lovely dad is in the end stages of dementia. He has lost his ability to swallow safely, but still tries to eat and drink(pureed diet/ thickened fluids). Still, the results are horrific for him- choking, coughing etc... so distressing. My mum had cardiac amyloidosis a couple of years ago, and died, peacefully and with dignity in a Marie curie hospice. I feel my dad is suffering, he's in a care home...continual antibiotics for recurrent chest infections. Has anyone any advice how I can access palliative care advice for dad?? His GP does not seem to accept that dad is nearing the end of his life, and is undoubtedly suffering. Please, please help.

Alice01 5 years ago

Obviously I'm on the wrong forum :-( I do wonder when alzheimers end of life will be acknowledged and there will be real addressing of these issues. I wish strength to all those here. As I say, my mum had magnificent care from Marie curie, I'll always be grateful. Just so very difficult to access help for end of life dementia for dad. 😔

Clare 5 years ago

Hi Alice,

I am so sorry to hear about your dad’s situation, dementia is such a devastating illness and causes great distress on all concerned.

In regards to dementia and end of life, it is, of course a condition that can shorten life expectancy. However, this will be dependent on what other health conditions the patient has and it is always difficult for health professionals to predict the length of this period.

End-of-life care for a person with dementia requires input from various agencies including the G.P., community nurses, social services and health care workers.

Everyone who has been diagnosed with dementia is  required to have a care plan drawn up with a variety of healthcare professionals. End of life care should be a key part of this dementia care plan.

I understand your frustration with your dad’s GP, but it is important that the doctor will play an integral part in your dad’s care, which is why you need to have a frank and honest discussion with him or her. When you speak to the GP, it is important to be  open about your feelings, anxieties and concerns in regards to your dads care and indeed pain management.

Many people find it helpful to share their feelings.  I hope you get a reply from others on this forum. If not, please note that our Support Line is available, should you wish to talk to us. If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

Other organisations you may wish to contact are

Dementia UK: 0800 888 6678

Alzheimer’s Society: 0300 222 1122

Best Wishes,

Clare (Marie Curie Support Line)