Hi all. Feeling overwhelmed and lost at the moment as I want to do the best for my mum and feel the hospital she is in just wants to discharge her.
Brief history
My mum was a healthy independent 85 year old who had a massive stroke leaving her paralysed down her left side and unable to talk.
After week 1 - she was able to talk and move her head.
Week 2 - Still had ng feeding tube in but was able to eat yogurt and other smooth food. Started being hoisted into a chair and was only able to tolerate 30 or so minutes due to pain.
Week 3 - 2 physio sessions but very tired, unable to sit straight and no core strength. Said she could feel the cold ground with her left foot and was able to wiggle toes.Was put in chair daily to help with strength. Fell out of chair and was found by nurse - not sure how long she had been on the ground for
Week 4 - First urine infection 3rd cathater put in. Start of delirium
No longer sat in chair.
Week 5 - Started on antipsychotic - side effect reduced swallow. Went from Level 5 foods to Level 1.
Week 6 - changed to different antipsychotic had lost 8kg. 4th cathater fitted due to infection. Moved to level 4 food.
Week 7 - cathater got pulled out not sure how .
Week 8 - Nil by mouth and on oxygen due to congestion and blood saturation being 86%.
Week 9 - only nutrition by ng tube and thickened water by mouth. Came down with covid
So we are at the start of week 10 in hospital. Covid has knocked mum for six. Consultant has suggested peg feeding tube and have been approached by social worker for potential discharge in 2 weeks!!!
This seems stupid to me. She needs to gain her strength and do some physio. I realise that the chances of her walking again are very small but being able to sit in a chair/ wheelchair would give her a better quality of life. She is also still suffering from delirium so gets very upset/paranoid. As far as feeding delirium can also cause lack of swallow so this needs to be resolved.
Sorry just needed to offload.
I sympathise with your mother, she really is going through it.
You are in the right place to get it all out,
please share as you feel the need.
but . . .
this isn’t something you can control, though it is dreadful to watch,
it isn’t selfish to take some time to look after yourself,
she needs you fit and well
Reading this has angered me, so I hope there is some information that is missing. It is very well known that Urinary Tract Infections, especially in older women, can cause ‘delerium’-like behavior. I am wondering why she must be catherized, as I am assuming that is the cause of UTI. Is it for her, or to make it easier for nursing? If she is confined to bed she would need to have pad or brief changed as soon as it is wet, as well as turned every couple hours so she does not get bed sores. Quite painful. I am also assuming congestion and pulse oxygen issues are due to COVID. I don’t know how the UK system works, but it does seem a bit hasty to try to send her out so soon, especially with a COVID setback that she obviously obtained in hospital. Would they be sending her to a Rehabilitation hospital? Or to home? Who is there to take care of her? Here (US) family can refuse to take a patient home. Unless they can care for themselves, they cannot be thrown out. They could be sent to a residential nursing home, though. Which is okay much of the time, but she got off to a good start, it seems. Rehab seems a much better option. If you could help her by massaging her left side, especially, and exercising her legs and arms for her as tolerated while she is too sick to do it herself that may help her. The infection would most concern me, with her not acting herself.
I am somewhat afraid to post this, as it is ONLY MY OPINION, and I am ASSUMING a lot. I might be a bit triggered by a similar situation with catheters and infection. My doctor even ordered that I should have none, but still the nurses kept insisting and inserting. I had to tattle on them and two of my doctors got on them sternly. One never wants to cause trouble with their care team,but on occasion it is warranted. I pray for the best for your mom. Be an advocate for her…ask everyone the questions you have and tell them all of your concerns.
@Star2
I think @DeAnn when talking about exercise has got something there.
In the early stages with no movement or response then how can progress happen?
I’m sure gently moving the ‘numbed’ limbs will slowly get things to start working again.
Signs of improvement won’t be immediate but patience will be rewarded.
I wish both you and your mother well as, I am sure, does everyone else here on this forum.
Welcome to the forum, and I’m sorry that you have had sad cause to join us
From what you say it does sound premature to discharge your mum but then none of us know the details nor are any of us medically trained .
What we do know from our own experience & the shared experiences of many on the forum are that you need to fight for her and you need to take support for yourself where ever you can find it.
There’s a list of support groups here and the stroke association has a helpline and a wealth of information that you can find here
Hi DeAnn sorry to hear of your bad experience. Mum had the cathater in when we arrived in the hospital. (We live 7 hours away) only reason she doesn’t have one in now is because she kicked the nurse when they were trying to fit the fifth one.(delirium /no capacity to decide!!)not surprising as I am sure they hurt her placing one of the first ones as I was in her room for number 3 and nurse was having difficulty and mentioned to the other nurse trauma)
They are suggesting care home discharge which I believe would mean no rehab. I had thought about giving up work and moving into her house with her short term but was told her care needs would be too much as she is bedridden. Still have the hope long term she can move in with me and family once we have moved house.(we were planning this prior to stroke as need an extra bedroom for her)
Being congested and needing oxygen was prior to covid. I went down with her for an x ray as they thought she might have aspirated. Another nurse said there were colds going round.
Must admit my head is spinning trying to advocate for mum and spending so much time in the hospital.(have open hours as was initially helping with feeding and lately keeping her calm)
Glad I found this site and all the wonderful people on it. x
@Star2 welcome to the forum. What a difficult situation to be in. As @Mahoney has said if there is nothing medical the hospital can do they will look to discharge your mum. It does seem a little premature based on what you’ve said. You need to speak to the staff to find out what the plan is & state your case too.
I imagine right now she isn’t up to any physio & whilst you’d like her to have some if she is delirious they may not be able to do anything that will help until that passes. But these are all questions for the medical team.
My heart goes out to you as it is very difficult to see a loved one like that.
I know all too well the realities of post-stroke life in an older person. My mother was in her early 70s, and she just feel apart emotionally and mentally after her stroke. She recovered very well physically, though. But, as we all know, there is much more to post-stroke life than walking and talking well, as well as having good speech and memory. My mother had all everything back - but not her emotions (never did recover them).
At any rate, how bad was your mother’s stroke on the Stroke Severity Scale? My mother’s was about a 15-17 (moderate-severe).
I wish your mother the best of possible recoveries. Just hope for small gains, and that her mind recovers somewhat. Physically-speaking, I wouldn’t expect too much from her because of her old age. But you never know, she might get a bit better somehow with her leg and hand. It’s hard to say. It’s never about giving up; it’s just that we have to be realistic at some point. Never blame yourself, or think you aren’t doing enough. Sometimes, there’s nothing you can do to make someone else better. My father and I know that all too well with my mother. She just couldn’t get her normal emotional state back. We had to accept it in the end.
Hi Simon
Yes I feel discharge is premature as before she got the delirium physio was an option. From what they have said about delirium it could last weeks or months. My worry is she will just get weaker with no movement and problems eating and all the other related issues of being bedridden.
The day after she was admitted she had the discussion with the consultant about DNR and would she want to be moved into a high dependency unit if she had another stroke or got worse. She made it clear she wanted to live. Think she took exception to the doctors comments and said she felt he had already measured her for her coffin.
My mum is a fighter. (Unfortunately now her spirit seems to have been broken) With my conversation with the consultant he made it clear that 70% of patients with this severity of stroke would not be able to live independently again. We had excepted this but we want the best quality of life for her. x
Just opened my emails and had one from social worker so will be dealing with her. She wants to do a self-directed support co-produced assessment.(what a mouthful) Along with a form there was a list of care homes and asked to tick 3. (I just burst into tears). Just feel they are rushing things as no actual needs assessment has been done by the medics. So how do I know if I should choose care home or nursing home. (Think it would be nursing home but I need that confirmed)
However I still think it’s too soon to decide anything.
Still working out pros and cons of mum getting a peg feeding tube. Is it just another way to make her care easier for staff. I am sure she will start eating again but it was taking me 40 minutes per meal L5 foods on a teaspoon.(still has a ng tube in)
Read your wonderful letter of encouragement to self will definately read to my mum. x
Hi
I Offer you some reflections from things you mentioned in your posts. Maybe the little bit removed we are makes it easier to see the wood for the trees?
The delirium, and it’s potential cause by urinary infections seems to be a prerequisite to improving her prospects on most other fronts. So a focus may be on treating the potential causes with an aim to removing it. At least identifying whether it’s neurologically permanent or infection based on treatable.
Obviously it’s presence effects feeding and all aspects of personal hygiene. Which is a constant need so uses resources wherever she is or wherever she goes. Presumably nurses,carers, doctors aren’t fully dedicated but shared amongst a number of people with needs. The practicalities of their providing care and you providing care need to be considered in both the immediate and the longer term.
The planned options for your possible courses of action at the moment based on those praticalities should recognise the impact of her capacity to co-operate and be purposeful on all around her and have options at such times as it’s improved (or reduced )
This topic will then be preparation (rehearsal?) for identifying questions that maybe you should be addressing to the medical professionals? both in terms of your own doubts and in terms of the examples of other people’s experience shared here
They are all the sources of what to enquire about. when purposefully phrased they will be questions to the medical staff on the lines of "why this conclusion? what evidence is it based on?”/ "what alternatives would be normal and why as each been rejected? What is objective fact and what subjective opinion”
You might extend that for each of the areas where you say something to the effect of “it’s too early / inappropriate / ill considered” to ask the question of the medical staff “who is accountable for this?”/ “Who makes this decision?”/ “How is review instigated?”/ " How is it changed?” How is it monitored? What time scales are every stage?
in each case you might also ask yourself "why do I think it’s too early?, what are the advantages of now vs the advantages of later? Issues or risks now vs later? When would be a better time? why would it be a better time?..
Maybe the most important thing anybody has replied to you is the sentiment that you must look after yourself (emotionally and physically) because as her advocate you have a key job.
Take any support you can get from any source, reach out to the agencies around you such as citizens of advice bureau and the myriad small charities that are familiar with these challenges. If you’re not already in contact with age UK then that would be a port of call
Yes, that’s very true. You know my mother’s story didn’t turn out well, but she was told that she would probably never walk again (older age, apathy, etc.). Well, she started walking at 4 months, and by 8 or 9 months, she was walking like a normal person (not tingling, great balance and reflexes, etc.). She could even go up a flight of stairs without holding on the railing. In fact, she was walking with the best of them in her age group. So, you’re right: doctors are often telling stroke patients things that are not true. You can’t give up; you just keep going.
When you see pictures of yourself when you were young, can you go back to those days? No. But that doesn’t stop you from going on living, right? Well, same things with stroke patients – they can’t go back to those days of pre-stroke life exactly, but that doesn’t mean that you can’t go forward with a good or decent life.
Thanks everyone for your insights they are so helpful. Spoke to the psychiatrist today who is very good. He is very much of the opinion that there are several clinical issues that need to be resolved to deal with the delirium and said she shouldn’t be discharged with this level of delirium. Hope the consultant agrees with him.
The second uti was cleared up I believe but in a blood test today they said there were infection markers which could indicate another uti or infection somewhere else. Also discovered today she has a displaced hernia. She has been having pain in her stomach for weeks and I was told it was a suspected hernia but no more than that previously. Also given a localised pain relief patch for her paralysed arm.
On a positive note she was calm for a little while today so I massaged her legs and encouraged her to move her feet. On her paralysed side previously she had only been able to wiggle her toes but today she moved her ankle. I know it’s only a small thing but it’s a positive. Have got her a colouring book which I told her about as thought it might help relax her and help coordination in right hand and had a positive response so hopefully try that tomorrow/today.
Once again everyone thanks for your support x
Yep I agree with mahoney, they’re all good positive signs .
It’s appropriate to keep reminding ourselves that some days there are negatives but there are always positives in the future to come and in the past to focus on as a reminder that it’s all in the long term progress .
Really glad that you’re getting some support both from the psych and on here and that you’ve seen some positives on which you can build
@Star2 sounds like a bit of progress is being made. Glad they agree that she shouldn’t be discharged with that level of delirium. If they can get on top of her infections it may well improve the delirium a bit.
Great news re her ankle movement. It’s all progress in the right direction.
The colouring book is a good idea too. I took up colouring after my stroke. Not very good at it but found it therapeutic & it helped me gain use of my affected arm back too.
Couldn’t agree with Simon more on this!