New member saying hello/what has brought me here

[Amie]

Hi all, thanks for allowing me to join.

my story is my mom’s story. Just over 2 weeks ago our lives changed when she had a hemorrhagic stroke. The first night they were preparing us for the absolute worst but 2 weeks on my mom is still fighting this, day by day hour by hour etc. This is the scariest time of my life and as it probably goes without saying the worst Christmas I have ever experienced, well it wasn’t Christmas at all.

My mom currently cannot speak, swallow and is paralysed on her right side.

I know it’s early days, she is in a ward with others who have been in for 6 weeks or more. I’ve had to take time off work as I just feel so desperate and can’t concentrate on anything else and am spending as much time as possible with her in the hospital.

so really, just saying hello and hoping to touch base with others who may be in the same boat either as survivors of stroke or family members.

I’m sure I’ll have lots of questions as things progress but at the moment that’s about it.

Thanks for reading, Amie

[ManjiB]

Hello Amie - Welcome to the community.

Nice to meet you albeit under difficult circumstances for you as you adjust to your new situation. You are doing the right thing and hopefully things will settle and you will be able to work out a way forward for you and your Mum.

There will be plenty of advice from members who have experienced the same or similar and you can ask as many questions as you like. You will likely be offered help, advice and information from the team looking after your Mum as she recovers from her stroke. All sorts of help is available and depending on circumstances this will be tailored to suit your Mum’s care needs.

Do not be afraid to ask any questions that you feel need answering and try if possible to involve your Mum in decision making. Also, if you can get help for yourself if you are going to be involved in ongoing care for your Mum. Friends and family can help and you can get professional help which can be paid for or subsidised as per your Mum’s personal circumstances.

If I would advise anything, it would be do not try to rush things. Your Mum will recover at her own pace and this will be unique to her and her mental and physical condition. There are no hard and fast timelines (no matter what the doctors tell you) as each person recovers at a rate that is suitable for them. This can range to a short period of a few months to longer periods of many years - it all depends on many different factors.

This Christmas might have been the worst you have had, but if you believe, then I can assure you things can get better and your Christmases will be better going forward.

There is so much more I could say but you should take time to adjust and then you can either search for posts in this forum or do your research for answers you will seek.

Wishing you and your Mum all the best.

Namaste|

[Anna_Moderator]

Hi @Amie

Welcome to the community, I’m sorry to hear about your mums stroke.

It’s incredibly hard and shocking when these things happen to a family member and your first instinct is to make sure they are OK but please don’t forget to look after yourself too.

We have our Stroke Support Helpline:0303 3033 100 which you can call to get advice or just to talk things through. I hope you’ll find this community helpful too, there are many members on here who have been through similar with parents having a stroke so please use this support and reach out whenever you need to.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[Susan_Jane]

Hi @Amie sorry to hear of your mum’s stroke but welcome to our community. We are a merry band of stroke survivors and their carers and families and I hope you will find this a useful place to be.

A stroke is a traumatic experience and it affects not only the stroke survivor but everyone around them and I can completely understand how worried and emotional you are feeling.

I’m here as a stroke survivor but I know how devastated my 3 grown-up children were when my stroke happened 8 years ago. It’s early days in stroke recovery terms and I’m sure you will have lots of questions along the way. There will always be someone here who can offer advice and information, so please feel free to jump on and ask away.

Try not to look too far ahead at this point in time, just take it one day at a time. Recovery following a stroke is a long and difficult journey and you will sometimes feel as though nothing is happening but you will need patience and support to help you to help your mum through this traumatic experience. Try not to compare your mum with other patients in the stroke ward, every stroke is different and every stroke survivor’s recovery journey is unique.

Please remember to take care of yourself while you are supporting your mum, you are important too, so take up offers of help.

Sending positive thoughts and best wishes to you and your Mum.

Regards Sue

[Mrs5K]

Hi @Amie & welcome to the community. Sorry to hear of your mum’s stroke and the impact that this has had on your life too. It is definitely a life-changing event and the first few weeks can all be a bit of a blur as you try and come to terms with what has happened. Considering your mum wasn’t expected to pull through the fact that she is fighting hard two weeks on is a positive sign. As many people will tell you recovery from stroke is a long road and you really are in the very early stages right now. Take everything one day at a time and in time you should hopefully start to see improvements in your mum.

There are a few carers/family members of strokes survivors on this forum and I’m sure they will be able to help with any questions you might have. It is very important that you look after yourself too as you were not being able to help your mum if you are not well yourself. Take any/all the help that you are offered and if you need to take more time out of work then my advice would be to do so.

Wishing you and your mum all the best.

Ann

[pando]

I have a few things in common with your mum ; hemorrhagic, right side, speech, swallowing, I was 44 days in hospital, is she about 60 years old ?

Good luck, ciao, Roland

Just in case it helps :
My 44 days in hospital

44 Days

[Jbob]

Hi @Amie sorry to hear bout your mom and the situation you find yourself in, I remember when my dad had his stroke - it was in Spain and I was just about to switch jobs. There is lots of initial stress and anxiety and feelings of failing too, you also need time to adjust. I was lucky 5 other siblings to share the load well 4 as I had my nephew due to my sisters poor health, but we got there.

I learned to listen to doctors then decide what worked for us as a family to care for dad and also to push him on good days and protect him on tougher ones. “0 years on and surviving stroke still look after him and managed to learn to work round everything, take both your time and treat yourself as well as rest. Your no good exhausted to anyone. speak with your employer- all of mines have been great, friends and family aand anyone else all will be kind enough to lend a hand. Ask questions on here- there’s no such thing as a stupid question.

Good luck and wishing mom a healthy recovery and you very best of good health.

[Amie]

Hi everyone, thankyou so much for your messages. I will send a more detailed response later but just wanted to acknowledge everyone who has responded and I am extremely grateful for everyone’s comments/words of support etc It really does mean a lot.
Thanks again, Amie x

[Amie]

Hi again everyone,

Sorry for not adding a response sooner, it’s crazy how fast time appears to be going at the moment when I am doing so very little but sitting at my mom’s bedside most of the time.
Since this all happened on 13th December it has been the fastest but slowest time of my life - which I know makes zero sense.

An update on mom. things have been very up and down. I’ve clung on to every slight positive, when there has been a definite recognition shown by her, or a sound that really does sound like a yes or a no. Sometimes she is more compliant than at others, I think we’ve gone through quite a rough week, at times I think she hates me being there, I understand, i imagine she feels depressed and sad at times, at times she won’t let me attempt to feed her (She can only have thickened yoghurts at the moment) but will sometimes let the nurses and csws etc

Sometimes it feels you take one step forward and 2 steps back - i know everyone here will understand this.

I have been frustrated that some times the basics are not being followed by the nurses etc for example, SALT making a recommendation that my mom should have some thickened water ‘as therapy’ a few times a day to promote swallowing a couple of weeks into her hospital admittance, but this didn’t happen other than by me, and so, perhaps inevitably, when she was next assessed by salt she hadn’t progressed and it was felt too dangerous so back to NBM. They also weren’t keeping on top of oral hygiene and so she ended up getting an infection of her salivary glands, causing one side of her face to swell and be really painful for her. I get sick of raising issues because I don’t want to be seen as one of ‘those’ relatives and for this to then have an impact on her care ( I have no reason to suggest it would but it’s just another thing I worry about) .

For what feels like weeks I have been asking them to review the type of NG feed she is having as it seems to be causing her chronic pain in her abdomen/stomach/bowels, constipation and then runny stools, I tell them she has always had gastro issues prior to any of this, and she also has IBS, plus other bowel/intestinal issues. I feel like I’m annoying people but as my mom is incapable of speaking it’s my role to speak for her.

She has struggled with the NG - she’s pulled about 5 or 6 out - although I don’t think it’s been intentional, e.g that she is demonstrating a wish to not have it in, it’s more that she is in so much discomfort/pain from the stomach area that’s she’s agitated and frustrated and it just gets in her way.

As we are now at around 5 weeks they are now considering next steps - e.g PEG - we have a Best Interests meeting with them next week to discuss this more. This is because although she may be able to understand what is being said to her, and I think at times she can and is understanding us and the staff, she has no way of giving consent or agreement.

If anyone on here has experience of PEG feeding/the process as a survivor or a family member I would appreciate hearing from you - I know there are lots of risks, aspiration pneumonia being the biggest risk, but any other info would be great.

I hate her having the NG well rather going through the process of having it inserted - on a couple of occasions I have been present to hold her hand - but it’s been horrific and traumatic for us both! She now reluctant to have me hold her hand and I think this is why - she’s associating it with this horrible experience.

One thing (another thing!) I am frustrated about which I will bring up at the BI meeting is that I don’t think there have been enough attempts to try to feed her/test her swallow, either with the yoghurt or other puréed foods and drinks - yes I know I have to trust they know what they are doing, but she’s only been visited by a SALT around 4 or 5 times and it’s not consistent and as said when they have made some recommendations - such as with the thickened water these haven’t been followed by nursing staff. Is this the norm or are we just unlucky that she is at a particularly bad understaffed under resourced hospital? There was a big gap over the Xmas and new year period which was to be expected but I would’ve thought a couple times per week would be a minimum - but here it’s once a week if we’re lucky. Dunno - maybe this is the norm.

Sorry this is really long and rambling - I’m just spewing my thoughts out!

In terms of the stroke - her obs seems stable - well, they have certainly reduced the the amount of times they are taking the obs and they have taken her off oxygen - so again that is a positive, there is no change in her movement, eg still paralysed on the right side, although there are some spontaneous movements noted. And at times she seems much more alert.

Thanks to anyone who has read or made sense of anything I’ve written here!

Amie x

[ManjiB]

Hello Amie - I am a carer for my Mum and we have been through pretty much what you are going through and I can also say our experiences wrt care or lack of, attention from SaLT, nurses, doctors etc. mirror yours. In our case Mum was discriminated on grounds of age and severity of the stroke that had her pigeon-holed in the “not likely to make it” category and so they did the minimum to keep things ticking over.

This is all documented extensively on this forum and you can read it when you have time - look at posts under my name ManjIB. I have written about everything and in great detail - from one month after stroke when Mum lay in bed effectively surviving in IV drip, then when we complained about why she was not being fed she was fitted with an NG tube. This was not hugely effective as it had to be retested each day - having to go to X-ray for confirmation it was still safe as they were unable to get “safety” confirmation from PH tests. So she was effectively “fed” every other day since X-rays delayed feeds. Weekends were almost no feed or one feed as again x-rays (routine) don’t work on weekends etc. etc. Friday’s were “discharge days” so staff we busy discharging patients, so Mum lost out. Monday’s were “new patients” day as patients admitted over the weekend got priority. That meant Tuesday, Wednesday and Thursday were the only days when Mum got “decent care and attention”. Like your Mum, NG was only a stop-gap and Mum was showing no signs of giving up and so PEG was next step.

Like I said there are exact parallels and I will leave it up to you to look them up if you wish to do so.

I will simply say, Mum never gave up and she always stayed strong (she also could not talk and was right side paralysed and mobility was limited). I would say she was / is an extreme case and what she has done since the stroke in terms of how she survived is truly amazing.

She is still with us today, still very strong (I was going to say stronger than ever, but she is currently recovering from an extremely difficult period from tail end of last year - again fully documented).

In summary, your Mum can make it through.
My Mum has survived 6+ years, she has been and still is Nil-by-mouth (they can’t be bothered to help) and she is cared for at home by us (family) with help from agency carers.

If you and your Mum want inspiration or hope, look at my Mum.

I wish you and your Mum all the best.
Even as I write, Mum is having her late night snack meal and she is sitting in her riser recliner chair watching Masters Snooker

If you have specific questions I will happily answer them here or in private via the private messaging or mail system on this forum.

Namaste|

[Mrs5K]

@Amie as you are finding out stroke recovery is 1 step forwards 2 steps back. Or certainly that’s how many of us find it.

A lot of the things you describe sadly seem to be common across the NHS these days. It’s the system that’s at fault but of course none of that helps your situation. Often it is left to family & visitors to provide assistance to their loved ones as staff just don’t have time.

Don’t ever be afraid to raise your issues & concerns with the staff. Unless you do things won’t change.

Use your best jnterests meeting to tell them how you feel and ask what they are going to do to help your mum.

It is difficult to say but your mum may hear / understand all of what is going on but just can’t express herself.

Wishing you all the best.

Ann

[Amie]

Hi again and thankyou for your replies.

Just a quickish update. My mom had a PEG fitted today. Fingers crossed it works out, I am a little worried about her pulling it out, I believe it’s near impossible but she is still so strong in her left hand yet cognitively probably does not really understand what it is and can just feel this strange contraption under her clothes.

Strangely the day we had the best interest meeting she had surprised us all by passing a further ‘swallow test’ and they agreed she could move from thickened yoghurts which she never really ate to level 4 puréed meals. So this was a little more positive and hence although me and my brother agreed in principle to the peg we all agreed we’d hold off to see how she got on with the level 4 meals. Anyway fast forward a week and sadly she has not eaten any of her meals, the best we’ve managed is a couple spoons of pudding at teatime and I’m told a few spoons of porridge in the mornings, so today she and some of her ‘room mates’ had their peg procedures.

This leads me to my latest query - does anyone have any tips on how we encourage her to eat, how can we help get her appetite back? I’m aware that she’s unlikely to be ‘hungry’ as she’s continued to have fluid and feed through the NG and as of today through the PEG. I’m most surprised that she doesn’t really go for the pudding other than a couple of spoons at most as pre all of this puddings were her absolute favourite thing, her weakness!

Obviously puréed meals don’t look the most appetising, despite efforts to make them look as such, but also they come to patients absolutely boiling and red hot and take a good 10-15 mins to cool down. I’m not surprised she doesn’t have lunch, she would never eat a main meal and pudding for lunch at home, and certainly not at 12pm.

I have tried to step back from the feeding, thinking maybe she didn’t want me or my brother feeding her but to be honest when we’re there staff seem to expect us to do it, of course I’m happy to do it but it’s all about the dynamics of our relationships and it’s complex in that respect. I would absolutely do anything and everything for my mom but I know my mom is proud and often very stubborn and I am sure hates the idea of me doing ‘care’ tasks for her. At least I try and avoid breakfast and lunch now but usually there at tea time so I do persist in trying to encourage her the - so any tips are much appreciated.

Sorry wasn’t such a quickish reply after all!

[Amie]

Thankyou for your reply Ann, yes I certainly can relate to the 1 step forward 2 steps back. It’s a rollercoaster certainly.
I notice my mom looking up at the clock in her ward at times, it has the time and the date and then I’ve noticed her look like she’s counting with her fingers, I wonder is she trying to work out how long she has been here, or is it all just one big blur she has no understanding or recognition at all. I mean she definitely recognises me, my brother and his wife but beyond that, it’s hard to know.
I cried to myself last night thinking I will never hear her voice again as she is still non verbal, I think I have some voicemails but I’ve found it too hard to listen yet. At least we still have her with us at present and I know the odds were stacked well against her in the day all this happened. She is a fighter nd is stubborn so hopefully that’s what’s getting her through!
I agree with what you say about the system being the fault rather than the staff, although I am definitely more content when certain nurses, csw’s and doctors are round than at other times. At times I don’t think she’s in a safe environment. I do feel able to share my worries most of the time but I know some staff take my concerns more seriously than others, or rather seem to.
I did not realise that nursing is so far removed from actual patient care or them having free thought and autonomy, every action seems to be dictated by what is on the computer and sticking to a Schedule, very rarely have I actually seen any nurse come and just check patients over, not sure if that is the norm and if it’s always been like it - it’s not how I imagined nursing to be. I’ve seen plenty come and ‘do stuff’ to my mom, eg check her obs, sort the meds etc but rarely do I ever see them just look at her or even attempt conversation or say what they are about to do.

[Amie]

Thankyou for your reply ManjiB I’ve read lots of your posts on other topics and your advice and comments are so informative, I’ve found them really helpful.

Your mum sounds amazing, a real fighter - your description of her watching the snooker made me smile.

I really hope we can get my mom through this, I know she is depressed now which is probably also having n impact on her not wanting to eat. The OT said to me yesterday he had tried to get my mom involved in some physio and out on the chair which I know is good for her but she just was having a bad day, he asked me if she’d ever been in anti-depressants! I was quite shocked, I’m like, well no, but I’m sure everyone would feel depressed being stuck here for over 5 weeks, having everything done to you/for you, not being able to speak, move your right side, I mean what does he expect?!

Thankyou again for your replies - they mean a lot.

Amie

[ManjiB]

Hello Amie,

It may not seem like it, but it is very early days in your Mum’s post-stroke journey. From what you have said, your Mum might be at a better starting position than my Mum was when she had her stroke and you know what has happened to her

Your Mum can recover as well as if not better than my Mum as she is able to do more than my Mum was able to do. My Mum is still nil-by-mouth and her PEG is her lifeline. That said, she has taken some water by mouth and not had any adverse reaction.

I think perhaps, your Mum might benefit from a chat with yourself and family or a close friend.

We did this but only so that Mum knew we were there for her (she was essentially bed bound for a month or so post-stroke). So we just wanted her to know that what happens next is her choice and her choice alone. She is a religious person and we told her it was up to her and God. We held her hand, comforted her when she was having “bad dreams” and kept her updated on what was going on. When she was more “with it” we asked her if she wanted to go home or if she was ready to go home and we felt we got the nod, but that is now a distant memory.

What worked for Mum was that it was evident from her actions she was not going to give up and she was not going to “go” if she was going to go whilst she was in hospital.

She never objected to the NG and never tried to pull it out, though others in the ward were doing this all the time. With the PEG she again accepted it. I think there are different types of PEGs and I believe some can be easily pulled out as they are replaced in the community by district nurses. The one Mum has is more “permanent” and in fact hers is now a “buried bumper” - this is an altogether another story and one that makes my blood boil. Perhaps I should write another post on the PEG, but Mum’s experience of the PEG is fairly unique. No one else has experienced the problems Mum has had. I am sure your Mum will be fine.

Not sure if you have had a chance to think about or if your Mum has already indicated how she would like to be cared for when she is discharged, but it is worth thinking about. It is better to have things in place so you can have a safe discharge from hospital.

Best wishes to you and your Mum.

I’ve just remembered I forgot to comment on you being tickled by my description of Mum watching snooker. This (her watching TV) is a recent development in her recovery. Up until recently, she simply was not interested in TV or other forms of entertainment, but as her recovery continues she starts doing things that she used to do pre-stroke e.g. drinking water (obvious, but given she had refused this for five years or more, it is significant). She was not a big telly addict but used to enjoy a few things such as snooker or even a game of football (she used to like watching Wayne Rooney in his pomp and she had nick named Sir Alex Ferguson “Gumdo Bapo” which loosely translates to “Grandad who chews (gum)”). So all these things are a massive step in the further rehab journey of Mum and my posts are there to hopefully encourage and inspire others what might be possible.

Remember, she is in her mid-90s and still recovering after 6+ years and each milestone/plateau/knock-back brings her back stronger and closer to her pre-stroke self. It is just quite amazing to watch and to be part of the journey with her.

[Mrs5K]

I think your mum looking at the clock and trying to work something out is a good sign. In some ways it doesn’t matter what it is she is working out. It will all help her brain with some rewiring.

Don’t give up hope on hearing upur mums voice again. It is early days and things could improve much more yet. Keep talking to her and gently get her to try making sounds or even just movjng her lips. It doesn’t matter if nothing comes out or just a grunt it all helps with moving forward. In some ways it is loke teaching a baby to talk. Repetition is key.

Your observations re the nurses sound very much like my experience. They just don’t seem to have as much of a personal touch these days. They do expect family to do things for their loved ones and if uou don’t, or someone doesn’t have any visitors, then these things often don’t happen. Whilst I was in meals were bought around and left on your table. Someone would come along a while later and take it away again. Noone ever lifted the cover to check you had eaten anything. It’s sad to see it like that.

Best wishes

Ann