Month: Aug 2023

Acceptance and non resistance

/ sarahlissyjenkins / Leave a comment

I’ve been thinking a lot about what acceptance and non resistance really mean and how to apply them in my life. I have had plenty of practice due to the issues with finding a suitable placement for my disabled son last year, but life keeps bringing up new challenges to face, each one requiring something different from me.

I won’t explain the ongoing difficulties with my mother’s hospital care because I’ve done that a lot lately, but suffice to say, despite everything myself and a sibling have done to try and explain to the hospital what my mother needs and what she can and can’t cope with, my mother is absolutely determined to do things her way, even though we know that she’s being unrealistic and she will not cope if she goes back home alone due to how sick she is now.

Of course my mother has the right to advocate for herself and so she should. But there’s a real problem when we know she’s stubborn and independent to a fault and isn’t being realistic about her new limitations. We (me and my sibling) can foresee a lot more problems ahead, and it’s an extremely worrying time.

But here’s where acceptance and non resistance come in. I said to my sister, look, we have done all we can do, but mum is determined to have her say, and we can’t change that. It might not the most practical way forward in our eyes, but it feels the best course of action to her right now.

It is so, so hard when someone is vulnerable and you feel you know what’s best for that person but they have the autonomy to state their own wishes and needs. You have to accept they will probably make ‘mistakes’ but respect their need to walk their path. It’s like back to front parenting when a parent gets old and vulnerable and in need of care. How far do you go to try and protect them? I think the answer is that for as long as someone is deemed capable of expressing their own wishes, you can only share your concerns and advice, step back, let go, and love them regardless of their choices.

It’s likely to be a stressful road ahead. My mum’s house is not suitable for someone in her condition even with the best will in the world and various equipment. But I am practicing non-resistance insofar as I remember to do so. I cannot fight this situation because it is out of my hands. There is peace in knowing I can do nothing more and things will unfold as they will, regardless of my input. Remaining present is essential for practising non resistance; if I spend time worrying about the possible outcomes I will be leaving peace behind and entering a state of turmoil which helps no one, including my mother.

And anyway, all the worry aside, I’m proud of my mother for being so determined no matter what. She never gives up fighting for herself, no matter how ill-advised her fight may be. She knows how to assert herself and get what she wants, even if it’s to the detriment of everyone else. She is from the generation that just ‘gets on with it’ and regardless of outcome, she may be going home to do just that.

The need for grace

/ sarahlissyjenkins / 2 Comments

It’s been a rollercoaster ride lately. My mum was sick, then made some improvements, but now she is very sick again. Yesterday I visited and noticed straight away how much she had physically deteriorated from my last visit just a week ago. She is starting to look like my dad did in his final weeks. She has also aged massively. She was sitting up in her hospital chair looking gaunt and frail. I think she’d made an effort to look ‘well’ because soon after my arrival she tried with all her strength to stand and move back onto the bed next to her. This caused her to be out of breath for several minutes. I felt utterly helpless, I couldn’t physically move her, and no amount of manoeuvering on my part would likely give her breath back. It was horrible to witness, but also incredibly surreal, as if it couldn’t possibly be happening to my independent and remarkable mother. It left me with a sadness so deep I haven’t been able to access it.

The hospital have been trying to get her sent home, with everyone seeming oblivious to how sick my mum actually is. I don’t believe she can or should be on her own for hours at a time even with carers popping in. I have no space at my flat and I live miles away anyway; my sister would have her instantly but there’s no downstairs bathroom and very little space. My mum refuses to go into a care home. She wanted to move to her own flat but that looks impossible now. The latest is the hospital social worker has suddenly realised that there is no equipment for my mum at her house, so she needs to assess the house before sending her home. This is despite the fact we (me and my sister) were trying to explain this weeks ago! My mum is desperate to get home. I think she is worried about dying in hospital.

My sister is trying to speak to a doctor to ascertain my mum’s prognosis because we believe she is going downhill and either the hospital don’t realise, don’t care or are actively ignoring it. I know I’m not painting a good picture of the NHS, but this is honestly our experience, and I’m sure it’s different in many cases, but we haven’t been met with much if any care or concern for my mum. The only communication we have received is when PALS got involved, but this has only led to the realisation that no one can send my mum home when she doesn’t have so much as a commode there. Never mind the fact she’ll be left to her own devices 22 hours a day, bedbound.

She needs another assessment from social services but that isn’t forthcoming despite contact. They are referring to an assessment they did when she was first in hospital but she has worsened considerably since then and no one is seeing it. It’s incredible how difficult it is to actually speak to a doctor within a hospital, never mind a doctor who is aware of the whole picture!

You know the feeling when you’ve reached the end of your capacity and grace is needed to carry you through? It feels like that. My mum is in very good spirits despite everything. I noticed she had a book on the afterlife on her bed. She wanted me to bring angel books last week. I’m so relieved that she is drawing comfort from her faith. I am doing the same. I’m meditating and reading spiritual books again to remind me that however much my mum is suffering, she will be ok in the end. She’s going home; she’ll be at peace. In the meantime all we can do is support her and show she is loved unconditionally by her family, and hope she finds strength in that too while she remains here.

Limbo-land and having faith

/ sarahlissyjenkins / 9 Comments

Everything feels akin to drifting in limbo at the moment. It’s not a really spiritual limbo like Moses in the wilderness or Jesus in the desert, but at the same time it’s a period of waiting and having faith in better things to emerge. At least, this is how my mum feels, and I’m feeling it right along with her.

On the good side, she seems to be improving. I say ‘seems’ because it’s genuinely difficult to know. Her baseline is much lower than it was before her admission, but she has come a long way since 2-3 weeks ago. She is now getting out of bed once or twice a day to sit on the hospital chair, and she also walks a few steps across the ward, albeit with the help of oxygen. She is prone to catching infections which seems par the course in hospital, so she is being treated for yet another one in her lungs which hopefully won’t worsen her baseline any further.

However, once she has recovered from the latest infection the hospital want to discharge her and she has nowhere to suitable to go. She can’t manage stairs now and at her house the only bathroom and toilet are upstairs. No one is being very helpful in regard to this. The doctors say it’s not their problem; social services are yet to re-assess her since her needs changed. The OT hasn’t written a report that would quality her to get more suitable housing. It’s all messy and complicated and there isn’t a single person we can talk to who will understand the situation from all levels. Passing the buck, pretending it’s another person’s responsibility, seems typical of the system now. I hear this kind of thing all the time on the news but it obviously hits much harder when it’s happening to my own mum!

So she’s currently stuck there not knowing where she will live and feeling frustrated and upset that the right things aren’t being done. I’ve emailed PALS at the hospital who sent a quick response back and will ask the discharge team to advise on the basis of my email. I’ve also emailed social services. I hope this will help.

On a more personal level, I feel permanently exhausted and overwhelmed. I’ve lost sight of the fact in situations like this all anyone can do is give it to God/the Universe and have faith. But knowing this and putting it into practice is much harder, at least in my experience. Maybe when it comes to my own suffering it’s actually easier to do this, but when a loved one is hurting and I feel helpless, the temptation is to fight for them, get angry at the system. There’s nothing wrong with those things of course; we need to speak out for injustice. But I can’t do it on my own. I need to remain connected to my spirituality and speak from a stronger place. Otherwise I’m building a house on quick sand.

The world will always fail us. As much as I wish otherwise, I know this is true. It doesn’t mean there isn’t beauty to be found, or so much good taking place, but ultimately putting faith in the people and things of the world means disappointment if we rely on them, because they are fallible, fall away, die. I want to put my faith, once again, in what I can’t see, knowing in the fabric of consciousness of which I’m a part, all is well,

Seeing and being seen

/ sarahlissyjenkins / 1 Comment

On Sunday I visited my mum, who remains in hospital. She is now into her fifth week of being there and small amounts of progress are being made, but since she’s on a high (temporary) dose of steroids, no one know how sustainable the progress is. Today she took a few steps with the help of a physiotherapist and her oxygen, which is massive considering how ill she has been, but all any of us can do is rejoice in these moments without assuming they will necessarily lead to longer term improvement.

I had my own ‘moment’ with her which I want to share here due to its poignancy and power. On my arrival I went to sit on the chair beside her hospital bed as usual, but this time there was a pillow on it, with her phone and a buzzer resting on the pillow. My mum told me to get another chair from near the back of the ward. I looked but there was only one which had another patient’s items on it. When I told her this she said ‘there are more chairs, grab one.’ I looked again but had to inform her that that was the only chair I could see, but it was fine as I’d just move the buzzer and phone onto her table temporarily and sit on the pillow. My mum said ‘But I won’t be able to see you. Sit on my bed.’

I appreciate that I am the only person who will know just how poignant those words were. Because throughout my childhood I never felt seen. I was always invisible. I know she loved me very much, but she never really saw me, or even wanted to. Some of you may remember my post about having a migraine at the airport in Crete and how she couldn’t deal with it, so she ignored it. She didn’t have the emotional energy to deal with me. Things have been a lot better between us since I entered adulthood many years ago, but I’ve still never felt seen in the true sense of the word. It’s funny because all the previous occasions I have visited her in hospital I sat on the side chair and she never mentioned it then. For some reason this time she felt she needed to see me.

Sitting on her bed took me back to being a child again, even though I have done this once or twice at her house, only usually to stroke the cat while she looked past me to the TV set. This time felt different and I was suddenly socially awkward with my own mother, stumbling over a few words like I do when I feel listened to particularly closely; a habit that goes back to being bullied at home and school over my appearance and quiet introverted nature. I have grown in confidence but somehow I can’t seem to escape the discomfort of having someone’s eyes on me and the vulnerability that comes with being seen, even though I need it.

But this is about my mum and, it seems, her need for connection in that moment, perhaps in her knowing that there was no TV to watch (poor signal on her phone), nowhere to go, no pets to care for, and her unpredictable health. Ill health and dying strips away everything that isn’t important or necessary, to be replaced with the only things that are. I am grateful that however my mum’s health pans out these moments are a gift to us both; her in the seeing and me in being seen.