Stuck in a moment that you cant get out of

Despite my shortening attention span I was reading the following article –, which is well worth reading if you get a chance. Stay here first though. The article is about watching a loved one die, and the unspoken phases of grief associated with it. Two parts struck me in particular.

The first was the feeling of being stuck. They describe how the author felt unable to make short term plans because they didnt know if they would have to drop everything. I have been through this, and am still going through this, maybe even on a greater sense recently. The inability to commit to things, such as meeting with friends. We have had a few occasions (many mentioned here previously) where we have had to pull out of meeting people at short notice.

I struggle to commit to speaking to friends, which is an extreme example of this being stuck. I know what I need to do, however cannot do the right thing. I feel inferior in some way, stuck in the moment that we are living. This might explain my listening to alot of music from my youth, trying to regain feelings of the happier times.

On a longer term basis you start to make sure that all bookings are refundable. We have had to cancel holidays and things of greater expense in our journey over the last few years. The knowledge my wife is worse than at those times makes you very wary of doing anything. Add in the mental impact of building up to something only to have to cancel, and it is easy to see why you become a recluse.

I feel that we are stuck in a loop. I watch friends and family moving forward with their lives, while we repeat the same cycle over and over. Despite wanting to break through, I know that we will always be dragged back to the situation. We know that we will have more hospital trips, and we know that her disease will only get worse. Having that knowledge means you have to fight harder just to keep your lives the same, let alone advance to something different. The saying one step forward and two steps back fits perfectly here. We may feel we are moving on, but right now are always pulled back again.

The second part of the article that hit home talks about relief. I think this can be seen as an expected emotion to everything that goes on when dealing with a terminally ill loved one. You experience such immense mental struggles, having to operate at high levels of stress for so long, constantly worrying and being on edge, that the feeling of relief will be inevitable when the end finally comes. Relief that the suffering of your loved one has ended. Relief that the cycle of pain you are experiencing has ended. Relief tinged with immense survivors guilt.

As a caregiver you go through so much alone. Thats not for lack of support at times, but just the very nature of what is happening means that other people are not aware. I am going to share a quote from the article here, which really does ring true.

“Watching someone you love go through treatments and not have successes… to see the tubes, the setbacks, the lack of dignity in the dying process… others do not picture how painful that experience is,” says Nathan. “And often, we do not share it.”

That is true. I have friends who know and understand what we have gone through to a certain extent, but even my closest confidants do not have any idea what is is like to sit and watch a loved one struggle for breath at 3 in the morning, or observe as tubes and pads are connected to keep her alive, hearing the beeps and the sucks of the machinery that surround her bed and operate as her bodily functions.

Some experiences we dont share because the true extent is too much for us as caregivers to fully comprehend let alone for someone who wasnt there to understand. Couple that with not being able to articulate properly what has happened, and blocking out things from your mind subconsciously to avoid reliving the more harrowing details. I lived through so many experiences that I wold not want to remind myself of, and plenty of things that I wouldnt want my children to remember.

So I fully understand how relief can come. A sense that the horror wont be continuing, and that the pain from that stage has gone. I am fully aware though about what will rush in once the relief has faded, dont get me wrong.

I have again said this before, but I am in the horrible position of wanting this situation to end, but dont want to lose my wife. I am sure the children would feel the same. They want to have a normal home life, without one parent asleep on the sofa with crippling stomach pain, or without a stock pile of drugs in the high kitchen cupboard. They would love to have two loving parents doing things they see their friends parents do, going out together, or sitting down for a family meal they can all eat.

It isnt much that we need as a family, apart from a normal life. We are stuck in the routine we are in, waiting for the relief of the end.


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Sad fear of missing out as terminal cancer caregiver

The fear of missing out as a caregiver to a terminal cancer sufferer

I’m sat here typing this, while it is below freezing outside, and looking at photos come through on my whatsapp from a works night out. I’m not there, and am having some fear of missing out (fomo) vibes. Thankfully the family are all tucked up nice and warm. We are safe and reasonably healthy (no cancer appointments until the new year, so we can try to forget that)

This isnt the first Christmas drinks Ive missed this year. Not even the first works do unfortunately. However unlike my colleagues, I have other responsibilities.

My wife still has this really horrible cold on her chest, and while she is vulnerable we dont want to risk anything further. I’d hate to pick up something in a crowded bar and then have her ill over Christmas itself.

But this also got me thinking about missing out. We have had a to cancel alot over the last few year, from holidays at last minute down to meeting friends, and even just going out on date nights. The disease has caused lot of living to be missed.

In the future there will be even more. My wife is likely to lose her life, which had so much promise, and theoretically time left. My children will miss out on having her around for major and minor times in their lives. I will miss out on having my partner around me, miss out on those fun weekends away, trips to the cinema, drinks on the beach. Our friends will miss out on her jokes and organising of our social lives.

So really, post a terminal diagnosis, fear of missing out takes on a whole new meaning. It isnt just one person missing out on a fun time out. It is a whole circle of family and friends missing out on one persons presence. Not being scared of not doing something, but trying to make as much of the time we have before missing out for ever.