Advancing rapidly

[rachel1973]

Mum had a fall back in May that triggered rapid onset dementia (of an Alzheimer's style). After the fall she was unable to weight bear so was using a wheelchair and could no longer live at home alone. She left hospital in June and went into a care home. Her appetite was poor from the beginning and over the last few months has decreased to nothing now. She is also bedbound and has contractures. They told me she wouldn't last till Christmas the way she was going so I arranged for mum to go home and be cared for at home for her last months. She never wanted to go into care so her dying wish was to be able to die in her own home.

Mum has been home for just over a week and the deterioration seems to be accelerating. We are struggling to get fluids into her - sometimes she will bring them straight back up with lots of mucus. The out of hours GP couldn't say what was wrong and I called her GP the next day who has said that she is progressing through her illness and needs palliative care.

Moving back to help care for mum at home has been a lot harder than I thought - a lot of the other posts I have read show other people have found the same. I just didn't expect the emotional rollercoaster and for everything to be progressing so quickly.

It's nice to know I am not alone (my husband and daughter have been great but are not as emotionally invested in this as I am and they are 100 miles away) and that there are other people who really understand the emotional aspect of caring for a loved one - wanting them to live as they are your loved one and you want to try everything possible for them, but wanting it over so they don't have to suffer anymore. Then there is the guilt for even thinking such thoughts.

Sorry for waffling on but just writing this out is helping me deal with everything happening right now.

 

[SarahJC]

Hi Rachel, you are not alone and doing the very best for your mother. I think how you feel is completely normal as there is such an impact for carers and their families - my mum has a slight fall recently and rapid deterioration followed, however since then she has picked up a bit, eating a bit more from nearly nothing but no longer good on her legs - you do feel very alone with it and difficult to process mentally - but I reached out today and sent a post - look after yourself as well

 

[Chaplin]

Does your mum have end of life care in place? If she is on the right medication she should have something to reduce the mucous and sickness. Sometimes it’s less about getting fluid into her and keeping her lips moist. As the body starts to shut down digestion is very difficult, hence why the right medication is essential. I would phone 111 if you don’t have a plan in place so that you are supported to care for your mum.

 

[rachel1973]

Hi Rachel, you are not alone and doing the very best for your mother. I think how you feel is completely normal as there is such an impact for carers and their families - my mum has a slight fall recently and rapid deterioration followed, however since then she has picked up a bit, eating a bit more from nearly nothing but no longer good on her legs - you do feel very alone with it and difficult to process mentally - but I reached out today and sent a post - look after yourself as well

Thank you and take care on your journey as well.

 

[rachel1973]

Does your mum have end of life care in place? If she is on the right medication she should have something to reduce the mucous and sickness. Sometimes it’s less about getting fluid into her and keeping her lips moist. As the body starts to shut down digestion is very difficult, hence why the right medication is essential. I would phone 111 if you don’t have a plan in place so that you are supported to care for your mum.

the GP set up the palliative care this afternoon so new meds have been prescribed, just waiting for the care/meds to start. It's just really hard as mum wants a drink but we have to be really careful how much we can give her at once - I feel like I'm stopping her from drinking by limiting her to a few sips at a time

 

[canary]

I am so sorry to hear about your mum @rachel1973

I do hope the GP has organised palliative care for your mum.
There should be carers coming in 4 times a day to wash, change and turn her. The District Nurses will be involved to administer anti-sickness, painkillers and drugs to dry up secretions. You may be offered night sitters for some nights so that you can sleep, and the Marie Curie nurses may be involved.

Dont refuse anything, this may go on for quite a few days and her body slowly closes down. There will be physical changes along the way, so do not be alarmed by them. One of the things that happens is that they stop eating and drinking altogether - offer food and drink, but if she clamps her mouth shut or turns her face away do not try and insist.

If you wish, we can hold your virtual hand during this time.
Look after yourself during this time and do not forget your own needs - remember to eat and sleep
(((((((((((((((((((((((((hugs))))))))))))))))))