Struggling with EOL Rollercoaster

Sophie20

Registered User
Jul 5, 2020
14
0
I don’t post a lot but do read a lot on here when I’m trying to make sense of this awful disease and what my Mum has been living/existing through for the past 4 years - so firstly would like to thank everyone that does post their experiences on here, I have found it a great help and apologies in advance for the ramble.

I feel I’m currently in a place where I’ve realised I am struggling. I’m confidant that this will pass but at the moment I’m finding it hard to carry all these emotions around with me so thought I’d write a post to offload as such.

Mum was on EOL following a stroke and being in heart failure for a few hours a few weeks ago. All the family were prepared to say goodbye and we had a good bedside vigil in place for 48hrs until an unbelievable rally. Strangely Mum appeared to be getting better than she had been for months. Started eating and drinking, being able to taste, speech much better and having proper conversations etc. Her improvement has been so good that she has been rereferred to SALT as there is hope she can come off pureed foods and thickened drinks she has been on for the last 6 months.

Then yesterday I got a call that Mum had had another possible TIA. Staff had called an ambulance so a tough conversation had to be had about Mums Advanced Care Plan and not being sent to hospital. Paramedics were very understanding though and after checking Mum over left her in her bed. Mum came round quite quickly and wondered what all the fuss was about, she was tired after lunch so I went home with intent to return in the evening. I cancelled my evening plans and thought I’d get on with my day but just became a little overcome with emotions - which really isn’t like me, tears wouldn’t/won’t stop at the moment.

I realise this is most likely a reaction to Mum rallying so well and me being able to get on with normal life for a while (denial probably) then bam - you get the phone call again and your back in the awful situation with Mum. Maybe it’s because when she was taken ill, her QOL was so poor it was almost as though there was relief on the horizon for her and there was almost hope her dementia journey would be over - lots of guilt for feeling/thinking that!

Then the rally and getting a lot more of my Mum back than we’d had for well over a year. Daily visits had become enjoyable - I am grateful to have had these but it’s made me realise/remember how she was before, how much I miss her/will miss her and that soon she will be gone. Or maybe not, who knows 🤷‍♀️

I feel better just for writing that down! Think that’s what I needed to do this morning.
If anyone managed to read to the end and has any tips on how to survive this mental rollercoaster I’d be very grateful to recieve them.
 

canary

Registered User
Feb 25, 2014
25,379
0
South coast
Im afraid that this emotional roller coaster of decline, followed by rally, followed by further decline... is far more common with dementia than you would suspect. EOL, despite it's name, does not necessarily mean that death is immanent. It just means that it is the final stage of the journey and can last several months. Or sometimes not. That's the trouble with dementia, you just don't know.

I found this stage to be one of the hardest because there is very little you can do and you don't know how long you have to prepare for. So prepare for a marathon and not a sprint. Look after yourself and remember to eat and sleep. You do not want to burn yourself out before she reaches the end
xx
 

Sophie20

Registered User
Jul 5, 2020
14
0
Thank you so much for replying @canary
I will indeed try to prepare for a marathon. I think Saturday brought this realisation to the fore. We are only a few weeks in and I was suddenly aware that this could be an ongoing situation and getting so upset scared me as I felt I might not cope going forward. Hopefully just a wobble and I’ll get my head around things again. I realised yesterday that Saturdays episode affected my Dad & brother badly as well and I think I need to channel some energies into Supporting Dad more to give my brother a breather. Hopefully that will make me feel more useful during this time ahead. See that thought only came to me whilst typing! Feeling much more positive now 🤞🏻
 

SherwoodSue

Registered User
Jun 18, 2022
699
0
I think sometimes having prepared ourselves so thoroughly we are almost disappointed when death does not come. Then we think what’s wrong with me? I must be such a horrible person ! Then we feel confusion and shame and then we have to go straight back to the carer role
So so hard. Yes do look out for others but yourself too. Book in with a counsellor if funds allow. This is all so so hard. Did my brain in.
 

Woody54321

Registered User
Feb 19, 2024
16
0
Right there with you, I feel exhausted, broken mentally but despite having my moments do pull myself together and from this lifeline forum realise I am not the only one going through this. We have to be strong and hold it together for family and look after ourselves at the same time, easy to say I know but seeing it in writing reminds us of our wise words. Take care, we are all with you xx