My father had a stroke several years ago after suffering several TIAs . Unfortunately at the back end of last year the TIAs started again , and he had to have surgery on the carotid artery urgently as it was only functioning 30% . The ultrasound showed that the other side is 70% and the one at the back is 30% but they unfortunately cannot operate on the back artery. He had the surgery and all seemed well with medication etc. unfortunately he had another TIA last week and has been having a sorehead since (around the temple area) . He had been in touch with his stroke nurse the day of his TIA(beforehand) said he was not feeling right and he had been suffering from pain at the back of his neck but she said none of this is related . My Father is disagreeing with this as the surgeon said he would have pain at the back of the neck. He also did not feel well before his TIA and again all this has been dismissed . They have also really said there is nothing else they can do for him (he is 87 shortly) I am concerned that the TIAs will again will become more regular like previous due to the artery at the back not fully functioning , and he was told without the surgery the last time he would have had a major stroke. He feels like he is ticking time bomb . Just feel a bit lost with it all and helpless . He is extremely tired and I am worrying for him
@Gem933 Hi & welcome to the community. Sorry to hear that your father is suffering so many TIAs. They must be very debilitating for him & a great worry for you.
Sometimes there are no answers to a stroke/TIA. But if I was in your position I would push back and maybe ask for a 2nd opinion. Sadly it seems someone’s age does play a part in drs decisions and it shouldn’t in my opinion. They do have to weigh up risks vs benefits though when ut comes to treatments & surgery.
You could try ringing the Stroke Association helpline 0303 3033 100 for some advice.
I hope you find some answers soon.
Best wishes
Ann
Hi @Gem933
Welcome to the community, I’m sorry to hear about your fathers TIAs and stroke, this must have been an extremely difficult time for you all.
I would echo what @Mrs5K has said about a second opinion and also about giving our helpline a call, they have a wealth of knowledge and may be able to help point you in the right direction as to what to do next and who you can speak to.
I hope you’ll find this community helpful, and I’m sure there will be more people along to offer their support soon. 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
Hello @Gem933 - welcome to the community.
I am so sorry you join us at a difficult time. I can empathise with you on this having been through a similar situation with my Mum - she was in her late 80s when she had her stroke and faced similar obstacles your father is facing.
Unfortunately, as Ann @Mrs5K mentions in her response, this is (ageist discrimination) does happen in the NHS. When this happens it is very difficult for us as the recipients as either patient or family to accept and naturally our first instinct is to challenge. However, sadly the NHS and the healthcare professionals have been hardened based on their experiences of dealing with cases like ours on a regular basis and they will “spout” or toe the company (NHS) line.
Sorry to go on in a long winded way but I am just trying to say please try to check your emotions which is not easy when you are seeing your loved one suffering or being denied what might be considered normal help which is usually made available to others in a similar situation but who do not fall into the age constrained category.
You can certainly ask for a second opinion, especially if it is the stroke nurse who is not being helpful or sympathetic. You can speak to the stroke consultant and he may be able to support your case, but if they have already said the artery at the back cannot be operated on then it is unlikely they will change their minds. I say this from experience as we have been told the same but for a different procedure - the consultant refused point blank at the prospect of operating. He explained he was not comfortable carrying out a procedure that would not benefit Mum significantly and which carried risk. He said he was the only person in that hospital who could carry out the procedure and so if he refuses we have no choice. A second opinion would be possible via a referral but this would not be “fast tracked” and so it would take as long it takes.
All this sounds horrible and it is, but we are not in a position to do anything.
I can also suggest that you speak with your father and if necessary get the consultant to speak with him and explain why the procedure is not being offered (too risky and low chance of success?). That way, you father can understand, though he may not accept the reason why he is not being operated on.
With regards to the pain he is experiencing at the back of the neck, regardless of what is causing it, something should be done about it. So even if the stroke nurse says it is nothing to do with the operation or related to it, someone needs to look at it to identify the cause.
I am assuming he is either at home or in a care home rather than in the hospital and so I suggest you get the GP or rapid response to come and have a look at him.
I will finish by saying you are in a difficult position and it is very tough to accept, but having been though this ourselves (Mum is now in her mid-90s), try and accept things as best as you can whilst pushing/asking for help.
I hope that you will get more practical help from the Stroke Association Helpline and perhaps the stroke consultant will be better able to explain the situation your father is in and what the “realistic” options are avialable.
I am sorry if my response says anything that is insensitive or upsetting as it is not my intention to cause any hurt of offense. It took us a long time to come to terms with where are and I hope you too will soon be able to accept where you are and what you can do about it.
Please feel free to contact this forum if you require any more support and I personally am happy to share any other experiences that may be of help to you.
I wish your father peace and comfort and I hope he can take some inspiration and comfort from what my Mum has been through and is here to tell her tale
I offer you a comforting hug as I know how stressful and difficult things might be for you.
Peace & Love.
Namaste|
Hello Gem933 – Welcome to this community where I hope you will find some comfort and support that will help you feel less helpless and not so lost.
I don’t know what I can say to help you feel better and which you can then help to make your father feel comfortable and to come to terms with his current situation.
I have been in similar situation to your father and I am here to tell the tale as it were. That said, I should be wary of what I say as I “speak as I see” and sometimes this does not go down well in the real world even though I mean no ill will.
One thing I can say which I hope will help you is that when I was faced with this scenario, I had to learn to come to terms with the “real world”. I was led to believe I live in a fantasy world or my expectations are not realistic because I did not want to accept what the healthcare profession was telling me i.e. my stroke is too severe and I may not make it, or things will not get any better (I was bed bound for over a month) etc. There was nothing they said to me that was of a positive nature – the picture they painted was bleak. I was coping with this as I have been through worse if that is possible but my family did not cope well and sometimes were distressed especially when they met with the consultants who never gave any “hope”.
So while this was going on, I was fighting on just to survive. I was not able to speak and I was heavily immobile due to right side paralysis but what limbs I could move I waved about and kicked and I kept jabbering though it made no sense to anyone (and still doesn’t today – I am still aphasiac). My family was always with me and we drew strength from each other – they from me and me from them. I got the feeling they were not getting good feedback from the consultants and nursing care was poor due to staffing issues and my heavy dependency on two helpers.
We have always been a close-knit family and have always known what each is thinking or feeling and we know the strengths and weaknesses. So my family has always known I am no quitter and I have very much been the one to “step up to the plate” in times of crises. So once it was obvious I was not going to change my philosophy on life just because I have been hit by a stroke, it was time for action. Sounds a bit dramatic, but it is simply saying we stopped listening to what we were being told by the health experts and started explaining to them why they were wrong. So when they said “your Mum will not get any better”, my family said, “We think she will” and supported it with examples from her pre-stroke life. So they said “No” and we said “Yes”.
We were climbing a mountain and we didn’t have much of the gear that is needed, but we never gave up and slowly the penny started to drop. The healthcare team saw what we were doing and what we were talking about and it was mostly talk – I was in bed and so all we could do is use words to encourage and support. We held hands and shared “energy” in that way and as the days passed, I grew stronger and then started to get some help e.g. to sit up in bed, to move limbs and so on.
Despite all this, we were not given what might be considered normal or useful help that a normal stroke survivor rehab program might entail. This was because the healthcare team knew we were not accepting their version, but their hands were tied. They were under “pressure” to discharge me from their care to make space for a new patient.
This is not easy to describe, but in simple terms it was ageist discrimination and so I got next to nothing that would have given me a proper chance to regain some of my pre-stroke attributes and ultimately, they “forced” me out by not giving enough that would enable me to join a rehab program and get better.
Whilst all sorts of promises were made (and to an extent still are) they are never actually kept or it is extremely hard to get them kept. So we were discharged with high hopes we will get the support and rehab opportunities that we saw were made available to other patients in the ward but once out of the hospital ward, it was “out of sight, out of mind”.
From then it has been up to me and my willpower and the support my family can give with some basic support every now and then from the NHS that has kept me going.
For all intents and purposes, the NHS will not do anything for me that they feel is too risky for me due to my perceived frailty and comorbidities (which is not true – I do not have comorbidities). So they will not take me into inpatient care and they will not operate on me.
I will be “supported” at home and I will be made comfortable – this means palliative care. If I want anything else, I will have to find ways to get it and resources to fund it.
You see, they (the NHS) are constrained by what they can offer and who they can offer it to and it is nigh on impossible to fight them and believe me I / we have tried.
What can you do for your father?
- Based on my experience, you can keep fighting and asking for things and in many ways this will keep you going because it means you are not giving up even though they may have.
- Review the situation and see what you might “realistically” be able to get – I am sorry if this sounds like giving in, but sometimes you have to stop banging your head against a brick wall or you will get a headache
- Try and find a good supportive person who you can use as a link to communicate “effectively” with the care / support team
- Get your GP up to speed and see how they can help you
- Ask questions – always ask why? Why can I not have the operation?
- Think about your own views and how you can make the most of what you have got available to you.
- Just as an example, I am being looked after at home and I am much better off as I have a proper personal care plan and round the clock care and carers who understand my care needs and can deliver. But I must stress, this is not at all easy and should not be taken lightly. It is hugely draining on the resources – financial and mental and physical for those charged with the care.
- Your father seems to be strong willed – sit down with him and ask / discuss what he would like to happen. Then see if it is “realistic – sorry that horrible word again” bear in mind you cannot force the NHS to do anything. You can ask, but they can (and often will) say no. I am really sorry to put it like this, but it is absolutely based on my own experience. I am still working on ways to find solutions that will help me and others in my situation. It is not easy, but I have never refused a challenge in my life and I am not going to start now.
- With his age and condition, it is understandable he will feel tired and like a “ticking time bomb” but try and ensure he gets good rest and does not get stressed (easier said than done).
That is pretty much all I would like to say for now and as I don’t know the full history or condition of your father and not being a healthcare professional, I am only able to offer my own personal views and these are not at all recommendations or advice, just things you might want to consider.
It is hard to see someone you love suffering and not getting the help they deserve (and they do deserve it) but as has been said earlier, ageism and other forms of discrimination are rife and it is often a struggle.
I really hope you and your father find the comfort and support you deserve.
In the event you feel you would like to ask anything specific, I am happy to offer my views and share my experiences but you may not always find them reassuring.
Best wishes to you and your father.
Thank you for your message . It is just sad to see my Dad as he was a very fit and active person and looked after my Mum right up until she passed away nearly 3 years ago due to cancer. My Dad also has prostrate cancer and his PSA levels have risen to 40 which is not the news we wanted this week. We know that artery at the back cannot be operated on but when discussing with the stroke nurse that he has been getting pain at the back of his neck and also now having the constant nagging pain in the temple area since his TIA it’s very frustrating. He has been on blood thinners for several years , he has AFiB also so they have to very careful what drugs he can have as he is very breathless especially in the morning . So apart from trying to tell him to take it easy we just live each day. He just wants to be here forever although we know that will never happen , but thank you for your kind message
Hello @Gem933 ,
I am sorry you have had more bad news this week
With all that is going on, I can see how sad and difficult it must be for you, not helped by the feeling of helplessness.
Having been in a similar situation to you, I would like to offer you my support and learnings from caring for my parents. It might not make easy reading for you at this moment in time and so I have used a feature of this forum that allows me to hide some text, which you then can choose to read, if you so wish when you are ready or you can ignore it altogether.
Hidden text - Click here to read when ready or if you wish to, other wise ignore
From what you are saying, it seems to me, we are looking at (and I hope you can forgive me for saying this, and for being so blunt) preparing for end of life. When you first hear this it sounds really awful and might even seem cruel and insensitive coming from someone like me, but I have been in your position and so I am sharing this to help you and your father.
We are all on this earth for some time and we all leave. We all deal with this in different ways and not all of us might get a chance to plan our exit.
I first faced this when we were told my Dad had cancer and it turned out it was terminal by the time he was diagnosed. It was horrible and we all felt bad, but we had to face the reality (as explained to us by the healthcare professionals). Now they gave Dad a few months and though we got him to take chemotherapy and he took it, deep down we knew it was not going to do much good.
We then took the view that it is time to live life each day and make the most of it. To his credit Dad remained so strong and never let on how much he was suffering. We all made extra effort to spend quality time with him. He and Mum spent time together remembering the past and how they both needed each other and how they got through many difficult times through the love they had for each other. They were even blobbing on one occasion which was a rare sight indeed. And of course Dad gave Mum some advice on how she should look after herself after he was gone.
Having accepted that he was to leave us much sooner than we had ever expected - he was only 69 and had been reasonably healthy otherwise. We just spent time with him and made sure he was a comfortable as could be. I/we used to give him massages to help ease the pain and he always remained positive and strong. He did his equivalent of the bucket list and we helped him with that. He said his good byes to those he loved and then it was take each day as it comes. I think this helped us to better cope with the loss, especially as he was taken from us way too soon. Also, in our case, it allowed some strained relationships to be mended, which was really nice because this was something that had troubled him for a long time.
Please forgive me if I am not helping, but I think now might be a good idea for you and your father and other family members to think about how he should live the rest of his days. It may give him the opportunity to do things that he has always wanted to do but not got round to doing. Also, I think by accepting that this is a normal lifecycle event does help you feel less sad and helpless and if anything it allows you to focus on doing things.
Though not quite in the same situation now with my Mum who is a stroke survivor, we are effectively in palliative care mode with her. Her stroke consultant told us she would likely not survive the stroke and even if she did, she would not have much of a life. We were even told to grieve for her - that was more than six years ago. So you never know what will happen.
I am sure you already do this, but give your father a big hug and let him know how much you love him. You will get through this 
Sending love and hugs to you and your father and I hope he is able to as comfortable as possible.
ManjiB