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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The signs of anticipatory grief to look for, and I how experience it

Today has felt like a very tough day. Lots of emotions flying around my head, and worries flying around my brain.

I read about a phrase I had not seen before. Anticipatory grief. This is where we grief before death when we are aware that someone is going to die soon. Marie Curie have a great article describing it:

Normal grief can have the following stages, as developed by Elisabeth Kubler-Ross, in her 1969 book On Death and Dying:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

The process can look different for different people, and circumstances can make us cycle through the stages differently. However, this is triggered by the death of the loved one – a car accident, a heart attack.

Anticipatory grief will have a trigger – usually the diagnosis – and the feelings experienced after that can be just as intense as grief as we normally see.

There are some conflicting emotions that we deal with however, and this is where I find myself this week. Obviously we are hoping our loved one doesnt die, but on the other hand are coming to terms with the fact that they have been told they will. Almost planning for life after their death.

This does happen alot with me (I’m not sure about the children). I desperatly do not want my wife to die, and want her back as she was, but also sometimes want to be able to move on. I have a feeling that the disease we are dealing with is holding me back, and these are thoughts that make me feel very guilty and exceptionally angry with myself.

That is one reason I am relieved to find out about the thinking around anticipatory grief. So relieved I was in floods of tears in a toilet at work. The concept explains much of my mental conflict, and the ongoing battle to clear my head.

Couple that with constantly being on edge, constantly worried about is going to happen next. Is that pain in her side an organ not working properly? Is the lack of appetite a precursor to something? This is really tiring.

I find the only time I feel happy is when I am in the car on my own, listening to music. The worries go, because I dont have the visual reminders in front of me. This is like a min break from everything.

We experience similar when I am with the children on my own, again there are no visual reminders of the worry, and we can be normal is only for a minute. This is the life I want, laughing and joking around, and I feel so guilty for thinking that, knowing that my wife will most likely not be able to be involved in that.

What is recommended for these feelings? Well I seem to have stumbled across one, of looking after yourself, having some relaxation. Otherwise talk to someone, and this is where I fall down. I am terrible for bottling things up until they are too late, and not telling people. I use the phrase I’m OK in response to questions of how are you all the time. And truthfully, most of the time I’m not OK. I need to take the advice and talk to someone.

I found the articles I have read today interesting, as they did describe my feelings very accurately. I just wish though that someone had a magic bullet that would make all this go away. None of the articles contained that secret.


I wanted to do an update to this blog, explaining how I am feeling about this recently. I find my self feeling listless and unmotivated in work, not really completing tasks that should be easy to do. I know what I have to do, yet just dont do them.

I limp through the day mentally, there but not really there. Finally the walk to the car, and that time when I am on my own heading home or to the childrens school is when the waves of grief wash over me, all the thoughts and emotions that I have been holding back all day will break through the dam.

I will start by thinking about losing my wife, then snowball into the thoughts around what I will do, and what I will say to the children. Oh god, what will I say to the children – that is the worst thought. I cant bear that thought.

Slowly but surely all of these thoughts will eventually overpower my self control, and most evenings I will find myself sat in my car, driving along to school openly weeping at the wheel.

Unfortunately this cycle is going to keep repeating, and I will keep having a mini breakdown every evening I am sure. The stages of this grief dont get dealt with as we are constantly living with the anticipation of what will come. And as we all know, the only way we will move on from anticipation in this instance will be for my wife to die, the thought of which is causing all this pain.


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Hanging by a thread

We lost a family friend today, aged 48. Still waiting for the full details as he was out on his bike, and found by the road. But it hits like a hammer. Someone I have known for over 25 years, snatched away in seconds. His wife and kids left behind. His brother, one of my best friends, torn apart. You realise that life can be so cruel.

This year has been particularly tough. Mental health is at an all time low, the world seems to be closing in on us all. No respite in sight, a recession happening, and winter is coming.

Anyway, keep safe. Nothing else to say