The rest of my life

The rest of my life

“All I have to be is what you made me”, So sings Amy Grant (singer and song writer) as I write this, remembering listening to the same when I was a young person (with thanks to Alexa!). I have been crying most of the afternoon looking out at the garden (which is amazing by the way!!) feeling total and utter desolation and frustration that I am captive in my bed or chair not being able to do any of the things I could be doing and driving Duncan crazy as I try to get him to do some of those things.  But you know what he had told me?  “you should see yourself as Lord Grantham” – he does not seem to like it when I do though!

Amy Grant – a song

When the weight of all my dreams is resting heavy on my head and the thoughtful words of help and hope have all been nicely said but I’m still hurting, wondering if I’ll ever be the one I think I am – I think I am; then you gently re remind me that you’ve made me from the first and the more I try to be the best the more I get the worst and I realise the good in me is only there because of who you are and all I ever have to be is what you’ve made me any more or less would be a step outside of your plan as you daily recreate me help me always keep in mind that I only have to do what I can find and all I ever have to be; all I have to be is what you’ve made me.”

  • Universal Music publishing Group Amy Grant

I still find it excruciatingly painful that I am dealing with a stroke. It is horrific and at times I cannot bear it and wonder if I am going to wake up from the nightmare.  Last week I had a physiotherapy appointment and when I arrived it was clear I had been upset.  The Physiotherapist then took it upon herself to tell me how I need to accept my situation adapt to the way I live and be mindful of the need for rest and how difficult this will be for me given my previous lifestyle and my personality type.  I kept telling her I understood she then kept repeating this message to me and I kept reassuring her that I understood. I could not believe she was doing this. she was telling me what the problem was but she was not providing any answers!  Furthermore, she is not a counselling therapist but a physiotherapist who was clearly not going to do much physiotherapy that day! I was not brave enough to challenge her about this. It is incredibly difficult to be honest in a situation where the health care provider has the balance of power in their favour.  Later in the car on the way home Duncan tried carefully to be calm and remind me of the messages I was been given are true. I lost it completely. “Stop it just stop it. I know it is true “I get it” I shouted “but will someone please tell me what the answer is!” “please stop going on and on about it” I shouted. “I know I know but please tell me the answer not the problem!”

Why ?

Now my lovely friend Amy is singing it’s raining in my heart – thanks for that Amy!  I have tried to think how I feel inside about my quandary No! it is my complete and intense frustration and my desperate sadness and horror that I might be like this for the rest of my life … why oh why? Why has this happened to me?   It actually feels like I am being cored out like an apple ready for cooking! The other day we passed our local train station and then the Screwfix shop (yep Screwfix!) and it set me off again gulping down the tears because I used to enjoy travelling into London riding first class (of course – you get free coffee and other treats!) and I also used to bob back and forth to Screwfix to pick up materials the builders needed to continue work in the house. (and no, the two are not connected Screwfix and trains.) I got home, lay down on my bed for my required afternoon rest which I need to do every day (post stroke fatigue is yet another consequence of stroke.). it was overwhelming again. The intense sadness, pain and disbelief that I am in this situation. 

My therapeutic friend comes to the rescue!! I am not sure what the answer is. I will explore some ideas next time… for now though time for hunkering down to avoid spreading the virus and my sadness around!

A recipient of care

Empathy is … communicating that incredibly healing message of you’re not alone (Brene Brown)

In recent years I have been a manager and leader in health care provision and in my last post as chief executive of a children’s hospice and through my senior management team I set the boundaries of care including the criteria for acceptance into the service and the quality of the provision for the benefit of the users. I had oversight of the service ensuring it was meeting the needs of the user and the standards set out by the Care Quality Commission (CQC). Whilst the service was small in comparison to any NHS Service provider nevertheless it operated in similar ways. So now I am a recipient of care and the table has been turned and it has been illuminating – from the many discussions with care assistants whilst in the shower, challenging the stroke consultant about goal setting, recognising the need for coordination of services available from community services, which I have found very difficult to navigate, insisting on physiotherapy following my hip replacement (when none was forthcoming), to the attitude of some staff towards me and other patients.  So, there is a lot to recount. It has been challenging for me as I was the one who led and provided the care service and now the balance of power has been turned and I am the one who has to receive it. 

I have had care and support offered by a myriad of health and social care professionals, the list is long and certainly tricky to navigate. This is compounded by endless appointments often in Norwich which is an hour’s drive away. It is tiring and tiresome, tedious in the extreme when all I wish for is to have my life back to enjoy retirement!  Whilst it is amazing to have all this support, mainly state provision, the reality of loss remains. The list of professionals includes:

  • Stroke consultant
  • Consultant Neurologist
  • Epilepsy nurse specialist
  • Nurses including those on the ward(s)
  • Community nurse
  • Health care assistants
  • Physiotherapists (private and NHS – including two different organisations probably outsourced by the NHS)
  • Occupational therapists
  • General practitioners (GPs)
  • Speech and language therapist (SALT)
  • Psychologist
  • Consultant Geriatricians (can you believe it!)
  • Mental health service (for cognitive behavioural therapy)

One thing I would suggest to the Clinical Commissioning Group is a designated stroke co-ordinator post (probably a nurse) to help patients certainly after discharge. An excellent person providing such coordination and who has been hugely supportive and helpful is the specialist epilepsy nurse Debbie who has been in touch with both Duncan and me since I started with my epilepsy.  She provides advice, regular visits and telephone support as well as liaison with the neurologist to manage my medications which has been crucial.

Whilst in hospital (on 3 occasions) a lot of direct care was provided by health care assistants (or similar titles).   Because of their direct contact usually of an intimate nature, this lowers the barrier toward better communication and so often this allows for a full and open discussion. On more than one occasion we had a sing (which lifted my spirits), another a discussion about my sadness and distress, sometimes we spoke about the culture of the ward as well as the training offered focusing on the needs of patients. On more than one occasion I asked the question “so who is the most important person in this building?”  Various answers would be given including the manager, doctor until they got it – the patient!  I really wanted to add if it was not for the patient there would be no money forthcoming which would mean they would not get paid!! (the wrong emphasis to make perhaps?).  I also asked what training they had received about loss and grief in anticipating the need of any stroke patient facing a significant loss and their consequent grief/grieving.   I would talk quite freely and openly about how I was feeling.

Here I am being hoisted whilst undergoing rehabilitation 

Rehabilitation whilst in Norwich Community hospital for 4 months
Nursing and care staff (real fun)

The medical care I received whilst in hospital was excellent and was provided through a stroke consultant team based at the Norfolk and Norwich university Hospital NHS Trust.  One of them has been terrific both whilst I was in hospital and in follow up as an outpatient.  The quality of his care is in his approach and warmth was very welcome indeed. He has been approachable, and answered questions positively and with reassurance.  For example, he explained what had happened when I had my stroke, including the size of it (a massive bleed as big as a fist), that a blood vessel had burst probably caused by high blood pressure over a prolonged period that the recent scans and tests indicated this was unlikely to happen again in the near future (phew!!).

The consultant neurologist has been really helpful in managing my epilepsy, helped by the specialist epilepsy nurse who liaises with him as and when my medication needs to be changed usually after a seizure. I did put him on the spot at my last outpatient appointment asking about my life expectancy following stroke and subsequent epilepsy. I think he was rather taken aback but he did respond to reassure me there should not be any consequence. 

Once home and after the early discharge team and first response team discharged me, we were most fortunate to employ a lovely carer who lives just across the road. How good is that!! Sheila (name concealed) and I often have wonderful conversations in the shower and whilst I am being dressed, and despite my initial massive embarrassment about being naked in front of someone the level of conversation has been a very therapeutic experience and Sheila and I talk a lot (not sure if I do most of the talking or she does? Those that know me perhaps know the answer to that one!!).  Sheila also does our housework once a week giving Duncan a chance to go out on his own. I of course love the fact that the dust is being dealt with!!

What a blessing she is!

I find a lot of therapeutic care has come through our cats!! (Apologies to those non-cat lovers). They seem to know I have been ill and one in particular lies on my bed and watches me and is quite content to sit close and be stroked whilst I look out of my bedroom window to our wonderful garden. This allows me to rest and reflect. Something I have had to learn to do when I am captive like this.

Barney and Suki my therapeutic friends

Suki little madam!

Richard Rohr a catholic priest and theologian speaks beautifully about the second stage/ second half of life and how this emerges from the first half and is a very different and productive (on another level).  I feel I have been catapulted into this stage of life but I find it hard to accept and embrace what this might mean. 

Friends and previous colleagues also came to help out

As I sit waiting in the morrisons café (Morrisons? I do apologise but we do not have a Waitrose nearby!).  I notice many things one might miss and not appreciate before disability, the kindness of the check-out woman to an elderly customer, the fact the café server is wearing hearing aids within a noisy environment the elderly gentleman in his wheelchair being spoken with by two women who looked like they might be his carers but who kept pinching his chips without asking and the look on his face .The inevitable screaming child (going right through me and my hearing aids!) and mum looking fraught and maybe embarrassed? The café assistant who smiles at you somewhat benevolently perhaps. I feel very conscious about the way some people look at you in a wheelchair or am I being too sensitive? (Do I see myself as someone to be pitied?) So, despite my disability there is a depth and quality to life that can be missed when being busy working and perhaps being in a family juggling many important things, which is how I lived prior to my stroke and which having lost this it is very hard to make the adjustment. I will persevere!

Here I am now my mouth droop has nearly disappeared (but I could do with a better hair cut maybe?)

Facing death

When I was first admitted to hospital, Duncan was taken aside on two occasions to warn him that I was not looking good and to prepare him for me not surviving. I was completely unaware this was happening and completely oblivious that I might die. This experience has probably left me with a fear it might happen again and certainly there have been times subsequently where this fear has been quite acute and I have had a few panic attacks. This fear leads to feeling incredibly sad that I have not achieved everything I want to do or have potential for, should I die.

Whilst I have been used to thinking about death in my professional career, to face the reality for myself is quite shocking.  I am only 59, by the way, so it feels very early, but the possibility of having another stroke which might kill me is a reality. 

Val a very dear friend and therapist provided some very reassuring support. She suggested that my near-death experiences would be buried within my psyche and this is likely to emerge in the conscious mind with the feeling of dread that another near-death episode might occur. That made sense to me (a logical male response) and I found this to be very reassuring bringing great comfort and a lessening of the dread I felt.

Whilst perhaps not fearing the dying experience (any symptoms or pain should be controlled – if good palliative care is followed) I feel immensely sad that I have not achieved everything I have planned to do with the rest of my life.  I also feel very sad about leaving Duncan other members of the family and some very dear friends behind. I was also looking forward to many projects and other work. I feel deep sadness about all of this, however, the corollary is that I will enter a new place in eternity. My faith has always been a tremendously important part of my life and now I am going to see it come to fruition.  Many might have doubts and be skeptical about this but I live in hope that this is not the case for me, rather I will begin again with new freedom and life, or so I hope!  This morning I got up out of bed had my shower and dressed all with the help of my carers, Simone and Duncan. I was able to choose what I could wear but I was not able to do much towards getting washed and dressed   The thought of not being able to do much of this independently (because of my left hand paralysis), and many other activities for the rest of my life is distressing so maybe I am better off in eternity?  

As I continue to reflect on these things, there is more to explore …. watch this space!

Post stroke emotionalism

I write this in January 2020 whilst feeling so sad, frustrated and angry about what has happened to me recognising I face a future that has been radically altered from what I expected when I retired back in August 2017

One of the well-documented reactions following a stroke is the person becoming emotional (tearful even angry) which is in part due to the brain injury but also by the inevitable loss and grief.  I have found that I become tearful quite easily.   I will always have some limitation with my mobility and I have experienced a lot of loss; within a few minutes my life was completely changed, perhaps forever.  Whilst I am working towards recovery, whether complete or partial, is yet unknown, and it is likely that I will have a level of disability in the future.  I need to come to terms with living my life in a completely different way, having different ambitions and different ways of achieving goals and aspirations.  I am facing a future that is likely to be constrained in what I can do for myself, reliant on others for even my personal care. and because I cannot do it myself then I will be very frustrated.  This is more likely to make me feel depressed, or so it feels when I think about it.  I will have to wait for everything as I cannot do it myself I am going to find this tremendously difficult if I cannot do it how I want to do it and I will find this deeply frustrating and I will no doubt rail against it . One thing I am very grateful for is that I have retained my cognitive ability. This, of course, means I am able to think about my future – a future that could be fulfilling despite my physical disability

When I do get upset people do not know what to say. There is no immediate cure or hope of a full recovery so this is my lot. “Put up and shut up’ or so it feels!

There are some times when I think I will be back at work soon, so despite having retired in August 2017 and having a stroke 6 months later my unconscious feels it I will get to my normal state, return to work – jump on the train and go off to London. Then the reality kicks in – this is not going to happen. 

I find that I feel more keenly the loss of past friends, relationships that have been important to me, but people whom I may now not have the chance to see again. Now I am in this state of disability and those halcyon times have come and gone forever and my future is going to be very different.

As I reflect on my life, I identify three defining challenges: 

  1. Dealing with my sexuality in light of my faith (and those people around me who have very strong opinions about being gay) – which at the time included seeking the possibility of “being cured” and getting married;
  2. Coming to terms with my sexuality and reconciling it with my faith to live in relative contentment and peace after many years of profound struggling;
  3. Struggling with being struck down by serious disability which is likely to remain with me until I die.

Each of the first two phases lasted around 20 years.  Do I have another 20 years left to live constrained by disability? There is so much I want to do but my ability to do things has been compromised. 

I watch other people going about their lives with full function of their limbs and this is so hard at times – to see people who might be cycling or walking down the road, gardening or even clearing up the house after a party and when I see it from my wheelchair it is so frustrating and difficult I want to throw things around shout and scream “why oh why has this happened to me?  So often I see things that need doing around the house and I want to stand up and sort it out but I have to depend on asking others and I quite often get a response: “why are you worried about that?”  My OCD gets a real clobbering!!

So how do others react to my sadness loss and tears? Different people deal with it in different ways. Some are sympathetic and compassionate; others do not know how to respond; some tell me how I need to come to terms with it, set new priorities new aspirations and find ways to adjust to my new life. Yes this might be true, but boy I want to yell at them “how dare you?”  How can they say this when they can return to their world that does not require adjustment; when they can move onwards and not have to deal with the total devastation and immense impact caused by a stroke (and certainly a massive stroke as I have had). What I look for is purely acknowledgement and someone to listen without giving advice or offering solutions. There is not much anyone can do but there are of course practical ways of helping such as tasks around the house and garden.  At one time a group of friends from London came up to stay and spent time in the garden carrying out much needed work. For both Duncan and me this was a gesture of their friendship, love and care to both of us. Having said that it was painful to watch as I sat again in the prison of my wheelchair. Gardening was one of my real joys and my total frustration is hard to contain at times.

A very dear friend came up to stay and we were talking about the hymn “It is well with my soul” written by Stafford who reputedly lost his children and how he was able to express his grief through the hymn whilst acknowledging his faith. My friend started to cry whilst we listened to the hymn. He took my hand and said he could not believe what had happened to me and how devastated he was for me. Of course that really set me off! I so value and appreciate his honesty, care, love but mostly his acknowledgement.