Hey everyone my mum has Alzheimer's she is at home with my dad still. Her confusion I would say is moderate and she is still mobile although slow. Her main problem has been eating. Has been very poor for a year. Weight was 6 stone couple of weeks ago. She hasn't eaten anything at all in over a week and drinks very little, less than 100ml per day. I realise if this goes on she won't survive very long. I just find this course different to what I have experienced before working in the hospital. Normally I would expect mobility and confusion to be worse before eating stops. Has anyone had this experience with their relative as mum? I anticipate she could go off her feet quite quickly and she will just run out of energy. Have appt with the GP tomorrow for bloods. I really think we are at end of life care but I just find it so strange that she is still mobile and knows us?
Not eaten in a week but still mobile and talking
- Thread starter DeFiCiEnTdAuGhTeR
- Start date
Hello @DeFiCiEnTdAuGhTeR
Dementia seems to defy all logic - both in life and in death.
My mum died from dementia and did not eat or drink anything at all for 17 days. It was only in the last 4 or 5 days that she became bed bound and passed into a semi-comatose state. Before this, she was still semi-mobile (needed a zimmer frame) and recognised me and other family members (although she usually could not remember our names). I have a photo of her just under a week before she passed away - my son went to visit and took his wife and young son (mums great grandson) with him to say goodbye. The photo shows mum and her young great grandson sitting at a table where they are both banging teaspoons on the table and laughing their heads off. Looking at it, although mum is very thin, you would never believe that she had only days to live...
Dementia seems to defy all logic - both in life and in death.
My mum died from dementia and did not eat or drink anything at all for 17 days. It was only in the last 4 or 5 days that she became bed bound and passed into a semi-comatose state. Before this, she was still semi-mobile (needed a zimmer frame) and recognised me and other family members (although she usually could not remember our names). I have a photo of her just under a week before she passed away - my son went to visit and took his wife and young son (mums great grandson) with him to say goodbye. The photo shows mum and her young great grandson sitting at a table where they are both banging teaspoons on the table and laughing their heads off. Looking at it, although mum is very thin, you would never believe that she had only days to live...
Thank you for your reply. Our plan is to try and care for her at home right up until the end. I have taken a career break from work. On one hand I really think we now need to be discussing getting a hospital bed in place downstairs and carers to help us for end of life as I know these things can take a while to be put in place. But on the other hand today she was outside with my children watching them try to play tennis and laughing at times. Then I think I am getting a bit ahead. GP on the last visit was just talking about keep encouraging her with fluids, which we have been obviously doing for months. I wish they would face the inevitable a bit more head on so we can be prepared. Will likely know more after we get blood results. Have found myself taking a few pictures of my mum with my kids, 3 and 7, in the past couple of days. So what you said about that photo really resonated with me. Do you mind me asking where your mum received her end of life care? @canary
Mum moved into a care home for the final three years of her life and she passed away in her care home, tended by carers who she recognised. The very end can be quite traumatic and harrowing if you are not expecting the changes. I think that starting to get things organised now in preparation is a good idea.
It is amazing how long people with dementia can go on for. Once she stops drinking completely the GP will probably prescribe a "just in case" box containing medication to keep her painfree and comfortable as she passes and will organise things like district nurses and extra carers.
I hope GP is on same page and supportive of getting things prepared and we can get all in place in a timely manner. My dad helped care for my granny when she died at home 2 years ago but she already had hospital bed and carers in place for a long time and there were 6 children to carry the load. I have some idea what to expect from seeing my grandparents nearing death and working on the wards on the hospital and anticipate it won't be easy. When it is your own mum though it's completely different and really it's just my dad and I to take on the practicalities of it all. We'll see if we can manage it. Thank you once again for your reply. It's so helpful just to bounce some things off someone who understands when all these thought are running around in your head.
I just thought I would add to this, @DeFiCiEnTdAuGhTeR , by explaining that although mum was not at home, because she was in a care home and not a nursing home (where everything is on hand), the arrangements were almost the same as if she had been at home. Mums GP prescribed the "just in case box" which was kept in the drugs cupboard and organised District Nurses to come in and oversee the injections and syringe driver. Obviously she did not need a hospital bed, or additional carers coming in as she they were already there.
