Hello all. My 79 year old mom had a bleed and 2 clots end of september of left pca and mca infarct and bleed at left back. The specialists stated she would die within a few days however she has pulled through. We were offered an operation to remove the pressure on her brain but the drs said she would remain with severe disabilities despite the op. It was such a difficult decision to make to stop active care. We knew my mom would not want this being paralysed and not being able to garden, paint etc. Our whole world collapsed around us. But whilst i was at her bedside i saw signs of life. I was so confused and the hospital were very contradictory saying she would never understand us, speak etc.
We are now 7 weeks post stroke. Our mom is in a nursing home being cared for. She can completely understand and recognises me, my sister, my dad and my children. She understands instructions and has spoken a few words but not coherently. In the hospital they started her on pureed food and thickened water however she refuses this most of the time. She is wasting away, and on her good days she is alert however on her very bad days she is asleep and unresponsive. The carers try to get her to eat but she declines food. She is still paralysed. Gp says she is too weak for rehabilitation so its end of life care but my mom is still here.
My mom suffered with atrial fibrillation, high bp and arrhythmia all her life so is at risk to covid which she never had and any other illnesses. I live 5 hrs from where she is now.
Please can anyone give me an explanation as is this all completely normal.
@Tek50 hi welcome to our forum. I’m so sorry this has happened to your mum and family.
I cannot answer the question but maybe someone on here can.
I do feel from what you have told us there is some neglect by the hospital at the beginning of your mum’s treatment.
Time is the greatest healer and 7 weeks is very early days. I can only suggest encouraging her to eat and maybe try to talk I’m not medically trained and all strikes are different for each of us. I suppose living 5 hours away complicates matters to.
I wish your mum my best and hope she improves kind regards Loraine
@Tek50 welcome to the forum but really sorry to hear of your mums stroke & the situation you all find yourselves in.
I have no medical experience but i know sometimes the drs have to make difficult decisions. It sounds like in your case they really didnt expect your mum to pull through. She has defied those initial odds though. I always remember simeone telling me when my dad was terminally ill that where there is life there is hope. I believed that for a while.
Being told someone is receiving end of life care is one of the worst things ever. They will often have coherent days but that doesn’t necessarily mean they will recover. Have the GPs/Drs explained why its end of life rather than rehab ? You could ask for a second opinion if you’re not happy with what they’ve told you.
Try ringing the stroke association as they will have dealt with this before & can offer some advice on what to do next.
If there is nothing that can be done then you need to make the most of every day you have with her as these moments will become precious.
Wishing you all, all the very best.
@Tek50 welcome to the site but so sorry to hear about your Mum. I’m not medically trained so I can only relate to what my late husband went through in the hope some of it may help you.
Due to the delay with finding him and the distance needed to get to hospital he was outside the “golden window” when he got there and they said operating at that late stage would have been more harmful. The first evening he appeared reasonably bright although no feeling on his left side and speach was a bit slurred. However over the next 2-3 weeks he wasn’t eating and lost a lot of weight (he didn’t have any to lose in the first place). They realised that he couldn’t swallow so he kept aspirating and was in danger of getting pneumonia. They decided to insert a peg in to his stomach to feed him 24/7 via a feeding tube. Not nice for him but he was getting vital nutrients and he regained some strength. All this happened through the pandemic so there was no occupational health, speech therapy or mental health visits once he went into the nursing home. Family couldn’t visit either to help encourage him.
He could speak very few words but bizarrely he could swear and sing (neither of which was like him). Had I known more back then I might have tried singing questions to him to see if he would reply.
What I’m trying to say is it’s hard to fight against a system that wants to go down an end of life pathway when you don’t feel they have been given the opportunity to rest and recover. We know recovery takes time. No two situations are the same and it is so hard for you living so far away. Do you know if your Mum can swallow? Can they explore other options? It’s a difficult when she needs to eat to regain her strength before they will help her with therapy.
There’s a lot of caring Stroke Survivors and their relatives on here who may be able to enlighten you further. Please take care of yourself too which I know is easier to say than to do
@Tek50 Im so sorry to hear about your mum’s situation, it has to be horrendous for you all.
It’s so sad that all your mum receives is end of life care. Please speak to her GP again, though I suspect he/she will probably say the same thing as if she is getting weaker, the window for rehabilitation will get smaller.
As @Mrs5K mentions, it sounds as if they didn’t expect your mum to pull through.
Wishing you all the very best.
@Maz hi Max I’m so sorry to hear your experience and that you lost your husband too.
Sending my sincere condolences and heart felt wishes to you kind regards Loraine x
Thank you @Loshy Lorraine
@Maz so sorry for your loss, my thoughts are with you
Thank you for your welcome and comment.
There is no communication and was even no communication when they could see my mom improving so they suggested food and fluids.
I suppose when these experts tell you and advise you, you believe them but I am training to be a psychologist and like to look at the person as a whole, plus I am spiritual and open minded so question everything. However the rest of my family don’t and just go with science. I feel my mommy is fighting to stay alive, its not her time.
She did have a peg tube but vomited and aspirated so that had to be removed.
It’s so frustrating being this far away as I feel I cant be involved in decisions around my mom and am missing valued time with her.
I am finding it extremely hard adjusting to not speaking to her daily. She is my world
Thank you Ann,
I plan to call the stroke association today as I just need clarification and peace of mind. I am going to see my mom in 2 weeks time and am going to ask the Gp to call me as I have questions.
Alternatively, hospice is also involved with my moms intervention, so I may call them as well.
My mom is eating less and sleeping more and I need to understand why.
Once I have all these answers I can hopefully move a bit foreward and have some form of closure. Its been the most awful time. One can never prepare for the loss of a parent at any age. Turning 50 this year made me realise my parents time is coming close and I put it at the back of my mind but I did not realise it could be so sudden and let alone a stroke, could be so damaging. Ive learned this all through my degree, the psychological impact of brain damage however when it impacts close to home its an absolute rude awakening. The worst pain imagineable.
I sympathise with everyone that has gone through this. My heart cries!
@Maz so sorry for your loss and thank you for replying. I am so sad to hear that his stroke occurred through the pandemic and can only imagine how awful it was. I do agree that stroke victims need encouragement, and praise even with the smallest of improvements. My mom has been end of life care since they told us she would not pull through. Similar to your husband that golden window was not recognised by the GP as a stroke but by the opticians so by the time my mother arrived at A and E, hours had passed. I am appalled at the services as she sat in A and E for 7 hours before actually being admitted, even by then they knew she had a stroke and had carried out Cat scan etc. but had not provided her with any iv medication.
The NHS had saved my moms life 12 years ago and to think they deserted her in her time of need, is absolutely tragic. She then went on to have 2 more strokes in the next week.
In answer to your question, yes she can swallow and they are bring in SALT to understand why she is not eating or if she is in any pain.
I cannot fault the nursing home, they are the kindest and caring people in the world. So grateful for my moms care there.
@Mahoney Thank you so much for your kindness
@Tek50 my heart goes out to you. Hearing the news that your loved ones may not pull through is one of the most difficult things ever. I like you turned 50 this year & will never forget the day I found out my dad was terminally ill. Sadly he passed at the tender age of 69 - 3 yrs ago now but feels like yesterday.
I really hope you can get the answers you need. The Stroke Association, GP & Hospice should hopefully be able to help. I found the Hospice were fantastic in my dads case.
A stroke can make you very fatigued & that could explain why your mums sleeping more…all i wanted to do after my stroke was sleep. If she isnt eating well that will also make her weak & want to sleep. Hopefully the SALT can sort that bit for her.
I really hope you find the answers you’re needing.
Sending you my best wishes. Will be thinking of you.
Welcome @Tek50 … I’m SO sorry for all the trauma you’ve been going through. The Forum is an excellent resource for both stroke survivors and their careers/relatives. You said you were open minded … so I hope you don’t mind my following suggestion
Is your Mum getting any mental stimulation ie she could perhaps listen to audio books, or be supported to have some IPAD/TV time (whatever the set up is where your mum is staying) … lying in a hospital style bed/care setting can be very depressing…I was desperate to escape my hospital last year! Could a nearer relative read to your mum? There are also apps that help your mum be more interactive if she wants something or even just to say hello, for example.
And maybe even you could liaise with the care staff for you to do a video call on an IPAD/TV screen… when your mum is awake, even if your mum can’t speak she would still be able to listen to you and see you, as long as it’s all set up appropriately; she could just stay lying down initially and not be disturbed physically.
Just an idea … well, wishing you both well @Tek50 … I hope that all makes sense and it’s just a suggestion
@Tek50 so sorry to hear of all your Mom has been through. The NHS is stretched but that is no reason to fail people. So pleased she is getting the care she needs in the Nursing Home. That will be a relief for you especially being so far away. Hope SALT can get to the bottom of things.
So sorry to hear of your Mum’s and your situation.
5 hours away is really tough. I live 3 hours away from mine so can relate.
Your Mum sounds incredibly resilient so I can understand your perspective.
I really don’t know what I can offer or advice I can give - only to send you healing energy and tell you my thoughts are with you both.
Take good care.
@Juppy thank you so much for your thoughts and care xx
@ZX1 thank you for your great suggestions. My dad does read to my mom when hes there and when she happens to be alert but she falls asleep easily. The problem is we cannot access my moms passwords on any of her tablet’s. Her tablet had audible on it and she loved reading. When I am there i am going to read to her.
When i spoke to her yesterday, i sang to her and she raised her eyebrows so hopefully she understood a bit.
Thanks for taking the time to respond and for your suggestions
Oh @Tek50 that’s so lovely that your mum recognised your voice. Could the care home find volunteers to read to her maybe? Or just buy a cheap ish smartphone and sign up to audible again yourselves. Great that your dad reads to your mum… especially on a spiritual level, she’ll be hearing his words, feeling his love. Same re your singing to your mum … how lovely💖
Brilliant, yes keep up visual and audio stimulation, even use special fragrances to see if they have an effect, I’m not a professional by the way…just an idea! Rosemary essential oil I find gives clarity. You don’t even have to put the oils in a diffuser unless the care allow it just waft the bottle under her nose (which sounds silly … but when I feel nauseous I find putting the bottle of Ginger Essential Oil under my nose eases the nausea…again just my experience. Rose Essential Oil can be so comforting.
Maybe you could record messages and download onto a usb, send it the care home, and hopefully they’d be up for popping headphones on your mum, when she seems receptive and with her permission, connect to a laptop/IPad they have there and it’s like you’re doing a Virtual visit to your mum!
Again, you could set up Skype/Zoom with permission and interaction with the staff, and the tablet/laptop could be put safely by your mum on the bed. I hope you don’t mind all my suggestions @Tek50 …I just feel so sorry for you being so far away.
Lastly, maybe put photos of you within her safe reach on the bed?
You sound like a lovely, caring person and I really pray for a miracle