Advice please

[canary]

((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))) @Summers

It is always hard and the physical changes are always troubling.
I think you said that this ward specialises in palliative care, so trust them - they will know what they are doing.

Make sure you eat and sleep.

 

[Summers]

I think the hardest part of all of this (and the part I didn't realise) is that every decision is down to us. When she was unconscious we could manage the decisions because we were confident that we were acting in her best interests but when she woke up it became much harder and my poor dad has really suffered today. I wish I'd known what we would have to do before we went into hospital. I think having an assessment from the SALT team is essential as if her swallowing function has gone/deteriorated then it becomes much more complicated because you probably won't get them back to how they were before. I also just wish someone would explain or tell us if she's taking fluid to her lungs but to do that they have to investigate and once you've agreed to no invasive investigations they won't be doing much including feeding her because that would mean inserting a tube in her throat. I also wish someone had sat me and dad down and explained the physical signs of death. What shuts down first? How the skin changes etc. It's a huge learning curve and it's very very hard. Thank you to everyone for all your support as it has helped us such a lot x

 

[Summers]

 

[Cat27]

Gorgeous photo.

 

[Izzy]

That’s a beautiful photo.

 

[Woo2]

It is so very hard , no two people are the same though so it’s very hard for them to know exactly how things will go . Hope you are managing to eat and drink and sleep a little . Hope dad can get some much needed sleep tonight. Take care ? Ps lovely photo ❤

 

[canary]

What a beautiful photo.

When someone is on palliative care the main consideration is comfort.
If it would comfort your mum to eat and drink a little, then that is what you should do. IMO though, doing things to artificially feed and hydrate her - feeding tubes, IV fluid etc is just prolonging the inevitable.

When someone passes away from dementia it always takes longer than you would think.
I have a photo of my mum 5 days before she passed away. She is sitting with her great grandson on her lap and they are both banging teaspoons on the table and laughing their heads off. Mum looks gaunt, but no-one looking at it would realise that she was dying, but she was. She had not had anything to eat or drink for 12 days and five days later she had passed away. She was never in a deeply unconcious state and would drift in and out of consciousness right up to the end.

 

[Summers]

I'm not sure what's happening today. We've been here 4 hours and not seen anybody. She has been conscious most of the day and has been smiling a lot. I've just asked for some medication as she's jerking again so they've given her some morphine. She had some ice cream earlier but started coughing and choking. We are waiting for the SALT team to assess her but I don't know what they'll do. The bag of fluid rehydrating her is almost empty so I suppose we'll have to discuss whether we continue with this approach with the doctor who is coming in later. I'm so confused; is she dying? If we keep hydrating her then how long will it take? I know everyone is different but this is very very hard. Is there anything we should be asking the doctor? My dad doesn't seem to understand the next steps and if I'm honest I'm not sure I do either. I feel quite naive to be honest as I just didn't appreciate that it would be so confusing.

 

[Woo2]

You can only talk to the Dr and see what they are actively doing , ask them to explain what will happen and when , they have a good idea . If your mum is on end of life care then I would of thought they are purely keeping her comfortable , not sure the ice cream is a good idea if she is coughing /choking , but if it comforts you , dad and mum then continue. It’s very difficult indeed , most of the losses I have witnessed my loved ones perked up before deteriorating again. Take care ? Big hugs .

 

[Summers]

When we arrived today mum had been given a shower and they've washed her hair. The SALT team (an amazing woman)have suggested she continues to be hydrated and they want us to feed her yoghurt with the aim of moving on to pureed food next week. She smiled and said hello when we came in and was so happy to see me. The consultants met with us and said that they want to withdraw the melazipan (Not sure of spelling) apparently she was on this due to her notes which said she was having seizures but she's not having seizures it's just the jerking movements that go with advanced Alzheimer's and she only gets them for a few days every month. She's so much better today it's quite incredible. She's been laughing at dad a lot and communicating with us. The consultant said that it didn't seem like she was dying now. We will just have to take each day as it comes. Dad and I are emotionally exhausted and I don't know what to feel any more. Thank you for all your kind and supportive comments as it really helps to know you're not alone.

 

[Woo2]

Wow what a complete about turn , I’m glad that mum is happy and awake and can have some yoghurt and fluid . No wonder you are feeling that way , it’s a huge roller coaster you have been /are on . Thinking of you all ? Try and look after yourself too . X

 

[Duggies-girl]

Oh my goodness, what a ordeal you and your poor dad have gone through over the past few days. I am glad that your mum is feeling so much better but you must be worn our physically and emotionally.

Wishing you all well and sending hugs.

 

[canary]

It does look like she has rallied.
See if you and your dad can get some rest now - you must both be exhausted
xxx

 

[blueorchid]

How are you all? x

 

[Summers]

Hi she's still here and is a lot better. I brought in some soup today and she ate it followed by a yoghurt. They're going to stop artificially hydrating her today. She's very very tired and although food doesn't seem to be going on her lungs she's coughing badly when she relaxes and tries to sleep so she losing control of those muscles which moderate fluid in our throat. The doctors and nurses have been amazing and it's a lovely ward. They're going to keep her here for a while to see how she goes but my dad won't be able to have her home now as she's too poorly. I'm reading a beautiful book called "a manual for heartache" and it's beautifully written and really helping me. Yesterday she remembered that I was her daughter and she cried and cried. It's the worst disease. I've just signed up to do the 100 miles in 30 days challenge to raise money for Alzheimer's. Thank you for all your support. When I spoke to the doctor earlier she seemed quite horrified about what dad and I have been through this week. I'm so glad I had the support on here.

 

[canary]

It definitely sounds like your mum is improving. Hooray for understanding staff!

Good luck with the 100 miles in 30 days
xxx

 

[Woo2]

Great to hear the staff have helped you and dad , and that mum is better ? The book sounds good too .Please keep us updated . Take care of yourself?

 

[Summers]

Mum went into a nursing home today. I'm so sad as now we can only see her 3 times a week and only one person at a time. Her EHCP says she's heading to end of life and will probably get a chest infection or water infection soon. However, the home say that hospitals usually put this and sometimes the patients go on for years! I'm so sad as I know this was her ultimate fear after nursing her own mum with the same disease and putting her in a home. The home is lovely but I miss her already. Part of me wishes dad and I had been stronger at the start but then that wouldn't have been us. Thanks for all your well wishes this is such a supportive place x

 

[Izzy]

I’m so sorry to read your update @Summers. I hope your mum settles well. Wishing you strength.

 

[Peedee]

Dear Summers, my heart goes out to you all. We lost Mum last Christmas, it happened before Covid so we were lucky to able to be with her at home. I cannot recommend strongly enough to you and anybody who is having to deal with dementia to try and link up with an Admiral Nurse. They are part of Dementia UK, though not all areas have one yet. I cannot express my thanks enough to them for the practical help, kindness and emotional support we received over several months. They made a very difficult period almost bearable. Sadly as yet there are not enough of them around. Our GP arranged the contact.
Prayers and best wishes