a journey

Broken

This may be indulgent, but in conjunction with my new attitude of giving very few fucks I’m ploughing ahead. Last year, when I put this site together my hope was that it would become both a record and resource for the projects I had in my todo list, maybe even inspire other older women to take on new challenges.
In January of this year (2022), everything changed. My beloved husband, henceforth known as G, suffered a stroke and our lives were violently thrown up into the air. Even though the stroke was devastating, affecting the whole left side of G’s brain, he recovered well. With the help of a rehab team, he regained approximately 80% of his faculties. He learnt to walk again, feed and wash himself. All the basics were there although he struggled and still struggles with memory; his ability to read has declined and his cognitive function has taken a hit.
If that wasn’t shocking enough, a few days into his hospital stay, a scan showed a shadow on his lung and further investigation revealed a malignancy. Stage 4. It was the cruelest Catch 22, no treatment was available for the cancer because of the stroke and no treatment for the stroke because of the cancer.
It’s been ten months since the diagnosis and of course it’s been stressful, but after the first few weeks our lives took on a a curious normality. Meals were cooked, and bins emptied. Life in its banality prevailed, interspersed with odd moments of joy and a generous helping of gallows humour.
But, recently, the reality of this situation is pushing through my barriers; I’m struggling and need an outlet to rant, cry, doodle or write terrible poetry. This is it. I imagine it will become a resource and aide-mémoire for this journey, as well as a bit of an homage to my lovely G.
The End

G died on Sunday 30th April 2023 at 6.20am

I haven’t written for a while as G’s condition rapidly deteriorated. I was so tired at the end of the day I struggled to do more than watch TV. I did take notes, however. So over the next couple of weeks I’m going to try and expand on them. It seems important to record everything at this time.
Another brick in the wall

Over the years G and I have established a routine around watching TV. As we’ve often been working or playing on computers we concentrated our joint watching around mealtimes where we would sit together and share the latest drama or blockbuster movie. Anything that wasn’t a joint interest we watched separately.

Lately G’s concentration and cognitive abilities have declined and he’s not able to follow complicated plot lines and he’s really not interested in watching anything apart from Grand Designs and maybe the odd episode of Friends. I’ve put off watching anything that we previously would have watched together but this week another line was crossed and I started watching the final series of Happy Valley. On my own. Although watching TV ultimately, is unimportant, it feels like another wedge pushing us apart.
Rollercoaster

With a nod to the profundity that is turn of the century popular music
“Life is a rollercoaster, just gotta ride it.” (Ronan Keating) This is how our days are passing now, in a stomach churning, lurching spin from hope to despair. G is, at times, lucid and engaged and then he can’t remember how to operate the stair lift. Last night I had to wriggle out of my dress and climb into the shower because he’d forgotten how to turn it off.

In the early hours I found him on the floor. He’d tried to get out of his chair with the footrest raised because he’d forgotten that he needed to lower it before he stood up. The chair had tipped up and he’d slid to the floor. He wasn’t injured or even shaken. No long lasting damage, this time, but it all adds to the anxiety I’m feeling at being able to do so little to help him.
Confused.com

It helps to keep a sense of humour when dealing with this crap. It’s not always easy, but I’m helped by G’s attitude to his changing situation. He worked so hard after he came home from hospital, relearning all the simple things and hitting all the goals he set himself. Now, in the last few days all that progress has been wiped away and we’re back on the path of relearning. I can’t imagine how confusing and frustrating it must be for him not to be able to perform simple tasks or articulate his feelings, but it’s to his credit and patience that he laughs at his failings rather than getting upset or angry. I’m aware that could change, but right now I’m grateful. I keep telling him that his clever brain rebuilt many connections before and it can do it again and so we go on…

And talking of keeping a sense of humour. We’re in the final throes of plumbers and electricians in the house finishing off the new downstairs shower room. With impeccable timing G had an unfortunate accident when the water was turned off, no washing facilities or toilet flushing…oh how we laughed! Whoever invented wet wipes deserves a medal.
Drinks

You would think that these huge issues with G’s health would be all encompassing and minor inconveniences would be pushed to one side, and to some extent that’s true. However, the changes in our lives manifest in a thousand pinpricks every day that cumulatively contribute to alter our landscape.

G always made the drinks. Teas, coffees and alternatives, he would make them all. He has never cooked but throughout our marriage he saw his role as keeping us and visitors supplied with beverages.

I didn’t drink tea for several weeks after G had his stroke. I hadn’t acquired the habit of making a hot drink and when it occurred to me it somehow didn’t feel right. On some level, like a sulky child, I didn’t want one if G wasn’t making it. I opted for water or a soft drink. Once G came home from hospital, of course I took on his role and now it’s hard to accurately remember him landing a cup of tea on my desk with a flourish. Terrifying how quickly some memories fade.
Keeping busy

Today I received my first, well-meaning, “be positive and keep busy” piece of advice.

I’ve been interested in the grief process ever since G was diagnosed, because the grieving has begun. I thought it might be useful to research what is likely to happen before I’m fully plunged into it and get a feeling of how I might be able to help myself. Keeping busy doesn’t seem to be the answer. This article by Nick Frye has some insights:

This brings us to the myth of ‘keeping busy.’ When experiencing grief keeping busy only serves as a distraction that buries the pain underneath every activity you can pile on top of it. It only helps to make one more day go by which in itself connects to the myth that time heals all wounds.
https://whatsyourgrief.com/self-care-and-keeping-busy/

What I’m learning is that there is no way around grief, no quick fix, and it’s not healthy to bury it with distractions. It’s important to acknowledge and allow ourselves to feel our emotions, including those related to loss. It seems that Ignoring or suppressing our emotions can often make them stronger and more difficult to deal with.

I’ve read about leaning into loss, allowing ourselves to feel and process our emotions. As I understand it if we can learn to lean into it we can also learn to lean out and take a break. Of course we’re all different and there is no ‘one size fits all’ but I’m finding it useful to look at ‘grief myths’ such as those detailed in Russell Friedman’s blog The Grief Recovery Method. Knowledge is power.
Mourning for an alcove

It seems the most unexpected events can trigger a moment. This week we’ve had a downstairs shower room constructed to make like easier for G. It was made at one end of the space we call the computer room, in the alcove that for the past 25 years G has had his desk. The addition of a downstairs loo and shower will make a big difference but the loss of his desk in the alcove is heart rending. To be honest, probaby more for me than him. He’s past caring and readily agreed to downstairs facilities when in the past he’d fiercely protected his desk area from any kind of interference.

For more than twenty years we’ve sat together in that room. In 2000 when I moved in G set up the adjacent wall for my desk and computer and in the intervening years we’ve worked away at various projects, separately and together. He wrote computer programs for my enterprises, first selling second hand books and then designing in Second Life. Retiring early he took up photography with a passion. Photoshop was usually up on his screen at all hours of the day and night as he meticulously scoured his images for dust spots, chasing perfection. There was also a time when we both played World of Warcraft, talking to each other across the room, whether we were struggling with quests or grinding for XP. In more recent times when G’s deteriorating eyesight put a stop to photography he sat in that space and played stategy games such as Civilisation. In recent weeks it’s just been Solitaire.

Although I know this transition will be a better use of the space it didn’t stop me getting tearful as I sat alone at the kitchen table this morning and realised that I would never again automatically turn my head to the right as I entered that room and see him sitting in his chair. It’s another part of life that’s come to an end. A reminder of what’s to come.
Déjà vu

In the first days and weeks after G came home I concentrated on searching out services and organisations that could help. I made sure we had the phone number of the palliative care team because G had decided that he didn’t want any treatment, didn’t want to go to hospital and was ‘happy’ to fade away. I’m not sure it works like that but it is absolutely his decision and no medical person talked about any other scenario so that was how it was left. We had the two pronged attack on his body to deal with, the stroke and the cancer. The stroke was ‘easier’. There were things we could do, the rehabilitation, the exercises. I bought cutlery with fat handles so it was easier for him to eat as he was redeveloping his fine motor skills. He had a walker for getting around the house, which was ditched after a few days for a stick. At first I helped him shower and toilet but quite quickly he got got back his independence in that area.

It was a busy time. Liaising with the rehab team, researching the best way to help him and keeping friends and family up to date with how he was recuperating.

After 6 weeks the rehab team finished their visits and it all went quiet. We were largely left to our own devices. G missed the daily interaction and the challenges given to him by the rehab physios. He had achieved his goal of walking to our nearest eatery for his favourite breakfast and although we went down there often in the spring and early summer that tailed off as autumn approached.

Things now are slowly going into reverse. He asked me to put the walker that he uses when we go out for breakfast in the shed. I’m hoping that it will come out again in the spring when the weather gets better, but it’s just a hope. It will only be a matter of days before he starts using a walker in the house, he is so wobbly and just this week he’s requested some help when he has a shower.
Don’t sweat the huge stuff

The whale in the pond is, of course, the prospect of impending death, when it will happen and how it will happen. There are no answers to those questions so we have to ignore them, as best we can, and get on with the everyday life. That still means that every ache and pain that G suffers panics me and I wonder is this it, the beginning of the end? I’m sure he does too but we’ve stopped having those conversations. How often can you discuss the same thing with no resolution?

So we’re dealing with the small stuff. Low level pain relief; thankfully he’s not suffering much pain at the moment. Raising his legs when he sits to alleviate swollen ankles and going with the flow when it comes to tiredness. There has been a feeling that he should push himself to walk further, get more exercise and somehow strive to improve his situation with the implication that he’s being lazy. The stroke rehab teamed were laser focussed in this area in order to help him get back to his previous level of mobility. They didn’t know what that was and it had reduced considerably during the previous two years. In hindsight this was likely the cancer taking hold which caused tiredness and difficulty in walking but wasn’t diagnosed. We had asked his doctor if he could have Parkinsons, but that wasn’t taken seriously. In the latter months they did check his legs for diabetic neuropathy but he was given an almost clean bill of health and told to come back in 12 months. Then COVID came and all investigations were put on hold.

So there’s a struggle between what’s good for G. Should he keep up with exercise and strive to improve his quality of life? How much of his mobility problems are stroke related and could be helped with a bit of willpower and determination and how much is it the encroaching cancer?

We did have some good advice from a rehab nurse who was also living with Stage 4 cancer. She said to listen to your body and if you feel tired, rest. Simple. G sleeps a lot during the day now and that’s fine.