What It Feels Like To Lose Your Husband To A Brain Injury

Sometimes it's a horror show

Trigger warning: contains brief description of an accident.

It all happened in a split second, in late June 2023.

We live in commuting distance to London and had been into town that evening to meet friends for dinner. I’ve had chronic fatigue caused by long covid and I was tired. The restaurant was noisy, which was difficult for me. Although I was chatting with another person at the table, I’d overheard my husband having a contentious conversation in which I disagreed with almost everything he said.

When we left the restaurant and walked up the road towards the station, I cried with exhaustion and exasperation. He took my hand and reassured me that we weren’t as far apart on the issue as I feared.

We chatted affably on the train and arrived at our local station at ten twenty. You have to go up one flight of stairs, over the bridge and down the steps to exit through the ticket office.

About a third of the way down, something happened with his footing. He did that little dance you do when you’re trying to correct yourself but it didn’t work. He ended up falling head first down the lower set of the steps and landed on the right-hand side of his head at the bottom, his legs still sprawled up the steps. As I ran down towards him my first thought was how angry he would be that he had fallen like that.

Except he wasn’t conscious. He was breathing heavily, like he was snoring. Thick, viscous blood started to form on the ground around his head. While another passenger phoned for an ambulance, I knelt down by him, stroking his arm, repeating the words, “Stay with me honey, I’m here.”

Four weeks later, in the ICU of a specialist London hospital where Graham was still unconscious, a doctor explained his brain scans. He pointed to the areas that were damaged and said that he would be affected in speech and language, higher reasoning, critical thinking and weakness in his right-hand side. I couldn’t imagine him coping with this. Graham was a wordsmith, a highly intelligent and witty man.

The doctor’s grim prognosis was correct. Graham is severely cognitively impaired. Even after months of speech therapy, his speech is mangled and it is very hard to understand what he is saying. He is in a wheelchair, unable to weight-bear and needs full-on personal care.

When I first tried to draft this article, I realised that I can’t possibly sum up the last twenty months in a limited number of words, so I’m going to focus on three key areas: uncertainty, bureaucracy and grief.

Uncertainty

From the moment he was loaded into an ambulance, the future was uncertain. Firstly, because of my health. As I sat next to Graham’s bleeding body, I wailed, “I have long-covid, how am I going to cope?” I repeated those words many times as I spent the night camped out on the plastic chairs of the hospital waiting room.

Then it quickly became about how Graham might, or might not recover. It is difficult even for a highly skilled neurologist to give a prediction of recovery.

After five weeks he was moved to our local hospital and spent the next eight weeks in their stroke ward. As time went on, staff started talking to me about his discharge and coming home. I have never been so terrified. I could see that his care needs were extremely high. It took two staff at least twenty minutes to change his soiled sheets and this happened every three to four hours. He couldn’t even sit up in bed let alone stand. At that point he couldn’t eat or drink as his swallow reflex had gone.

There was no way I could cope with that. They breezily talked about adaptations to our home and a care package. But a care package is carers coming in four times a day for as little time as possible. Graham’s needs were way above that.

Caring is a 24/7 relentless activity, without any days off. I knew that my fragile fatigued health could not manage. Thankfully, once he was in rehab, it became widely accepted that he would not be coming home.

The one advantage of this deeply worrying time is that I learnt to live in the present, thinking only of the next day or so ahead.

The uncertainty continues, now around funding. He was blessed to have the NHS fund his care until the beginning of January this year. He lives in a specialist care home. The fees are over £3000 a week. The local authority will inherit this burden, though they will take Graham’s money and income towards it. I’m still waiting to hear their pronouncements. I’m worried that they will move him somewhere cheaper that is not suited to him.

I describe the last few weeks as “waiting for the bombs to drop” as decisions are going to be made about his care that are out of my control. I’m appealing the funding decisions and angling for more NHS support but much of this is out of my hands.

Bureaucracy

Graham’s accident was near the end of the month. On that train journey home, I reminded him that on pay day he would need to transfer money into our joint account to cover the bills. Sitting in the emergency department, I thought about this money. His salary was paid into his personal account and I had no access to it. Right, I thought, I’ll contact his employer on Monday and get them to change the bank account to our joint account. Then I’ll be okay.

Wrong! Despite being married, they would not make any changes to payroll without his consent. But he was in a coma!

Being married gave me no leeway whatsoever to manage any of Graham’s finances. Because I didn’t have power of attorney for him, I had to apply to the Court of Protection for something called Deputyship. It cost £380 and took over eight months to come through. When I finally got the order, it was valid for only nine months. I had to reapply again, at further cost, to have it extended.

Unlike power of attorney, deputyship is heavily supervised by the Office of Public Guardian. For the rest of his life, I will have to do accounts, that have to balance to the penny, detailing how his money is spent.

In May 2024, they told me that I was not allowed to take any of his income for myself. Yes, me, his wife, was not allowed any of his money. I have never been so stressed. As if I needed this on top of everything else.

I consulted legal experts who confirmed that this is how it works. However, with a trail of bank statements showing regular transfers to our joint account and a doctor’s certificate detailing that I couldn’t work because of long covid, I challenged the ruling. I stated that I was his dependent and should be allowed a monthly allowance.

I won, which was a huge relief. However, this could be overruled by the local authority in future funding decisions.

Throughout last Spring and Summer, I spent several hours a week sorting out his affairs. It was like a job but emotionally more stressful. Several times I almost went under with the burnout of coping with it all.

There are two social security benefits that Graham is entitled to. Even after waiting all those months to get the deputyship, it still took another five months of gross government inefficiency to get the Department of Work and Pensions to recognise me as Graham’s representative. This involved several hours on hold to their phone-lines, visits to the local office and sending the necessary papers three times before they got their act together.

Grief

This is the worst. I have lost my husband, even though he still lives. I am married but I don’t have a marriage.

In November 2023, coming up for five months since the accident, it became clear that Graham was never going to be the same person, that he was never going to be able to be my husband again. It was a very dark time. If he had died, I would have had closure. Instead, I have no choice but witness his current state and struggles.

I’ve been through two Christmases, both horrible. This last year I went to the Christmas party at his care home. Despite singing along to the music, it was one of my worst days. The outside world continues to bumble along but the emotional pain boils up in my body. There is no where for it to go. I describe this as quietly unbearable.

Graham and I were always physically affectionate with each other. He is hirsute and I used to call him my Big Ted. I loved stroking or snuggling into his fur. But now, as part of his condition, he is extremely sensitive to touch. Apart from holding my hand (which he often crushes as he can’t judge his strength) he won’t let me touch him. I have to ask his permission to give him a quick peck of a kiss and he frequently refuses. I miss that physical contact.

We have been through phases where he bites and physically lashes out and punches me. The old him would be appalled at how he treats me, but he can’t help it.

I miss my honey bunny. The relationship you have with your spouse is unlike any other. I miss our dynamic together, the in-jokes and sayings that you have just with your other half. I don’t mind living on my own but I miss his companionship.

In recent months I can see that he is pulling away from me, rejecting me. He usually shouts No when I arrive for a visit and tells me to go home. I think this is part of his survival mechanism but I don’t know what he actually thinks because I can’t understand what he says. My presence is probably a painful reminder to him of a life that is lost. He is going through his own grieving process.

I am realising that I have to do the same. I call it an emotional divorce and it breaks my heart.

Relationship-wise, I’m in a limbo state. I’m effectively single, but I have a husband. How would I represent that on a dating profile? Not that I have any desire to find another partner. I can’t imagine having what we had with someone else.

Love

The one constant throughout all of this has been love. I am surrounded by love; from my family, friends, my faith community, Graham’s carers and many of you.

I have learnt to love myself and my many inadequacies as I flail around trying to do my best for him. The advantage of having chronic fatigue was that I already knew that my self-care was non-negotiable and I already had therapists and tools in place to cope with an extreme situation.

All of this love, and my Buddhist faith, has given me the strength to get through each day, to fight one battle after another, to continue to love Graham and to start to build a new life for myself.

Photo by Eric Prouzet on Unsplash

Thank you so much for reading this. I’ve been thinking about writing an essay about my husband’s injury for some time. I’ve recently had a Substack note go viral which has given me an influx of new subscribers (hello and welcome 😘). It felt like a good time to sum up the last twenty months.

Plodding gently

Cali x

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