Preparing for the end...

In a way I’ve been preparing for this scenario for quite some years. The first alarm bells rang out over a decade ago. Mum had a really bad bout of flu. There was no sign of the later dementia at that point. As a result of the flu, she’d become weak and dehydrated, so much so, that I made the decision to take her to take her to A&E (ER).

After “booking in”, we saw a triage nurse, who suggested I should take her home, monitor her, and give her Paracetamol. I stood my ground, pointing out that her demeanour was not normal, that she was dehydrated, and very weak. She needed support walking, and negotiating stairs – at that time, this was not normal.

It worked. Within a short space of time, we saw a Doctor, who was very concerned about Mum’s condition, not serious enough to admit her, but serious enough to ask whether she could be looked after properly for the next week.

Fortunately, I lived not too far away, and was able to stay with Mum, and look after her. This would be my first taste of what was to come. She was given antibiotics, and I was told to make sure she had plenty of liquids. Within a week, she’d made an almost full recovery. The frailty and vulnerability she’d displayed during that short period, made me much more aware of how vulnerable she was becoming - to infections, and other potential problems.

That was in 2002. Since then, our journey has taken many different twists and turns.

Subsequent to this event, she had a bout of shingles - this had a minor effect on her mobility, nothing serious, she was just a little less agile, but more seriously, became more prone to falls. The falls she had, were never too serious, and apart from the shock, she recovered easily. Until one day, she fell, and broke her wrist.

Whilst she again recovered quite readily, her confidence was waning. Her short-term memory also seemed to be deteriorating. More alarm bells!

As a result of these changes, she was eventually diagnosed as having suffered a minor stroke. Quite probably a TIA. More of which were to follow.

She’d earlier been diagnosed with Type 2 diabetes, and the hypertension she’d had much of her adult life, was finally treated with medication. As a child, she had suffered from rheumatic fever, and this undoubtedly affected her heart, as indeed it does with many who have suffered the disease. Unlike others though, she is now in her eighties. Many don’t make it past their fifties.

Forgetfulness and unfamiliarity with everyday objects - stove, washing machine etc. became more pronounced. She suddenly couldn’t remember how a familiar washing machine worked, or she’d get confused with the knobs on the stove (no surprise there – I still get that wrong!). She’d start to ask the same question over again, grind her teeth, or get agitated over something quite trivial.

It was becoming clear that something wasn’t right. After discussions with her doctor, she was finally assessed, and given a CT scan. In 2011 - probably far later than should have been the case - the diagnosis given, was vascular dementia.

Apart from slightly reduced mobility issues – the dementia shuffle – she continued to be pretty active. She was now living with me, and I’d taken on the more complex tasks she would have once carried out. Cooking for herself, was no longer an option, it would have been unsafe.

Until the beginning of 2012, I was in full-time employment. Towards the end of 2011, there were a number of incidents demonstrating that it was becoming an issue to leave Mum alone for any length of time. She wandered - not far - but was not able to find her way home.

It became clear that leaving her alone, even for a short period, was no longer an option. I had to make that very hard decision - to stop working - and start caring for Mum. It’s a very difficult one to make, and there are many who choose not to. Other commitments - children, work, finance - prevent them from making such a choice.

As a result of my own circumstances - I was unmarried, with no (known) children - I was in a position to be able to dedicate my time to Mum. This decision was made easier by the fact that I didn’t enjoy the job I was in. Had this happened a couple of years earlier, such a decision would have been much harder. Then, I was working, on a freelance basis, for a company that understood, and for whom I enjoyed working. And, the flexibility I had, would have enabled me to carry on both working, and caring for Mum. Much of my work could have been done from home.

My last job didn’t have that flexibility - I was left with no choice, care for Mum or carry on working - that for me, was a no brainer! Even though my income disappeared, I chose to care.

Caring at this stage was relatively easy - making meals, cleaning, washing, and general household duties. There was a problem however, with where we lived - a second floor apartment, in a building with no elevators. Mum was finding stairs increasingly more difficult to negotiate.

Fortunately, we were able to find a ground floor apartment, in a small block, designed for people with limited mobility. We moved in August 2012. Early the following October, Mum was admitted to hospital with a TIA. She only spent three days in hospital, but, her cognitive abilities had started to diminish.

Over the next few weeks, her confidence suffered, and her mobility decreased. A month after her TIA, she was hospitalised again, this time with a severe UTI. At the time of her admission, she’d all but lost any of her earlier mobility.

After three weeks in hospital, Mum came home. She was incontinent, unable to stand, and needed a wheelchair and commode. The change was dramatic - one of those notable steps - often referred to, with the progression of vascular dementia.

Mum is now, for the most part, bed bound. I take her out from time to time in the wheelchair, this, however, she finds quite tiring. She's happiest in bed.  Fortunately, before her discharge, all the necessary equipment needed, had been put in place. Mum is now well looked after, happy at home, and content. So far, she has not developed any of the problems associated with being bed ridden. She has no bed sores, and her skin - although high risk - is healthy and intact.

This has been our journey thus far.

From a personal point of view, I now have to consider the future. I know that the inevitable will happen, but I don’t know when. Everyday, Mum becomes a little bit more dependent upon me. I have become closer to her, if that’s possible, yet slowly, I’m losing my Mum. The Mum I knew as a child, has gone. She is now frail and vulnerable. She looks to me for love, protection and reassurance - much as I did to her, when I was a child.

Mum is now my “child”, though I certainly don’t treat her that way. Her needs are similar to those of a child - she needs washing, she needs help with feeding, and she needs her pads (diapers) changing. What she did for me as a baby, I now do for her - that lovely lady - who was once, and still is, my Mum.

As a result of her age and health. our time together is limited. How long? Who knows? My Dad died in 1994 of cancer. Coping with his ending was relatively easy - we knew, after diagnosis, within months, how long he had to live. We were able to prepare for it. Even during his last week, Dad was able to do everything for himself, except during his last two days. When he died - he was my Dad - unlike Mum, he wasn’t someone who needed someone to look after him.

Mum’s situation is different. She needs me - she needs my love, affection, reassurance and security. How long this will continue, only time will tell. As I sit here typing, I don’t know whether it will be tomorrow, next week, next month or next year. All I do know, is that it will happen. How do I prepare for that? How do I prepare for the event, when an increasingly dependent person, who I love dearly, a love, that through increasing dependency, grows by the day, is suddenly taken from me?

Is there anything that can prepare any of us for that?

Will I cry? Yes. Will I grieve? Yes. Will I be upset? Yes. Will I be happy? – If Mum suffers in any way during this journey, and it relieves her suffering, the answer has to be yes. I won’t like it, at that point my caring journey will end. There will be a huge vacuum in my life, but also an enormous opportunity to resume the life I had before.

Mum would want me to do that, and that’s the most important part of her final legacy. If she hadn’t wanted me to do as much as I could in life, she wouldn’t have had me in the first place. Life will go on, and once the pain has subsided, the memories will still be there. In my heart and soul, Mum will always be with me, she is part of me, just like Dad.

I love them both, and always will.