Acts of kindness/ being more comfortable in end stage Parkinsons

This is clutching at straws, I realise. We are in a challenging place with my mum and it has been this way for a couple of weeks.

An infection turned into being bedridden, getting emergency care packages in, speaking to Hospice at Home, District Nurses, CHC, GP, Parkinsons Nurses, me taking two weeks compassionate leave.

I am thankful for the amazing people on here who have been supporting us all through such challenging times.

I have cried bucketloads this week. I have been angry, frustrated, sad to think about how this is for my poor mum.

I have young children. Right now, I am just trying to do small acts of kindness. My partner suggest we get an Echo Dot. He said:-

We can set it up so your mum can get music, podcasts, audio books and in times of lucidity, she can say ‘Alexa, call (me) or call (my brother)’. This may all go horribly wrong but we are going to try.

Naturally, it will need a carer to tell Alexa what to ask for, but we thought we could put a laminated list of prompts beside the bed for things my mum likes to talk about, or the music she likes, the TV she likes so that all these different carers can have a bit of a steer.

I am going to ask for the hospital bed to be moved to a better location in the house where she can see the garden and it will feel more sociable.

Any other little things you did when you were faced with this situation? Would love to hear anything about making last wishes happen, anything that can practically help. Mum is lucid at times. She sleeps a lot when there is nothing else to do, I think. For example, a carer will be there, in another room and say ‘your mum is sleeping’. I go in, say ‘hello mum’ and she wakes up and is lucid.

Such a terrible, challenging time that we are trying to navigate through and change what little things we can to make things better for mum.

We live two hours away but naturally I have been making regular visits, whilst on compassionate leave. Thank you. No idea is a bad idea : )


Hi Havanas

I would like to congratulate you on managing to keep your mother at home during this challenging time. This in itself will make a massive difference to how she is and cannot be underestimated.
At the end of life, many focus on family and often talk about the importance of love. So anything from the grandchildren might be much appreciated, photos,pictures they have done , Whats App video link etc The chance to reminisce about meaningful episodes in her life. Also when the end seems to be really approaching for someone close to be there with her. Surround your Mum with love and care and you cannot go wrong and afterwards you will know you did all you could. Much love to you