Friday 28 June 2013

Becoming a carer is not something you plan for.

At no point in my previous life did I ever plan, or indeed expect, to become a caregiver. I am, by profession, a Graphic Designer, and also spent 26 years as an army reservist (Territorial Army here in the UK, similar to the National Guard in the US).

As a result, I've been pretty active – mountain climbing, rock climbing, skiing, marathon running and mountain biking. I'm a trained mountain leader and a qualified mountain bike instructor, and with the army, could have become a ski instructor.

However, things began to change about three years ago. Mum, who is now 86, was by then living with me, as it was becoming clear that she was beginning to have minor problems looking after herself, nothing major, and for the most part was able to look after herself.

That was fine, as I was away at work during the day, and away with the army most weekends.

Two years ago, things began to change. Mum started to have difficulty with everyday tasks. She became confused when trying to use the stove or the washing machine. She had a fall and broke her wrist. Stairs became more difficult for her to negotiate.

Later in 2011, Mum was diagnosed with vascular dementia. She'd had a minor stroke a couple of years earlier, and this was probably the first indication of what was about to develop. She had also been diagnosed, some years earlier, with hypertension and type 2 diabetes.

Mum had started to wander when alone in our apartment, and on one occasion was found outside, cold and confused. Even though she hadn't wandered far, she couldn't work out how to get back home. I was at work at the time, and unfortunately, where I was then working, cell phones were not allowed.

The caretaker of the building in which we were living, had tried to contact me, but was unable to do so. A message was left on my phone, and I was eventually able to retrieve this at lunch time. It was becoming clear that Mum would soon need to have someone take care of her during the day.

The company I was working for would not have allowed me to work flexibly, and fit work around caring for Mum, so a decision had to be made. I'd already finished with the army reserves that year, so was no longer away at weekends. Now, I had to make a decision regarding my normal employment.

At the beginning of 2012, I left my job, and started caring for Mum. I didn't consider myself to be a caregiver at that point. Mum was still able to walk, and was still able to carry out many tasks for herself, such as washing and dressing.

It was however, becoming clear that we'd need to find somewhere else to live. We lived on the top floor of a three floor apartment building, with no lifts, and the stairs were becoming more and more difficult for Mum to use.

We were fortunate enough to find an alternative ground floor apartment in a small two floor building. The apartment had been built with disabilities in mind, with wider doors and a wet room with level access for wheelchairs. When we moved in, Mum was still able to walk, but just a couple of months later, these adaptations were to prove invaluable.

At the beginning of October 2012, Mum was admitted to hospital, having suffered a TIA. She was discharged after just three days, but her mobility was clearly affected. Over the next few weeks she began to have even greater difficulty walking, and by the time she was admitted to hospital again, in early November, this time with a UTI, she was no longer able to walk.

After spending three weeks in hospital, she was discharged. At home, we now had a profile bed with a pressure relief mattress, two hoists, a wheelchair and a commode. Things had changed dramatically.

It was at this point that my life changed completely. I now considered myself to be a carer. All of the activities I had taken part in before, were put on hold. Any social life I might have had, came to an end.

Mum was now unable to walk, and spent much of her time in bed. When the weather is good, I do take her out in the wheelchair, but she doesn't really enjoy it. She's still convinced she can walk, yet is in fact not even able to stand.

Mum's room has been rearranged to accommodate the bed, commode and hoist. She has a TV so she can watch programs or DVDs. One of her bedroom cabinets now houses essentials, such as medication, continence pads and other equipment such as her blood glucose monitor, in-ear thermometer and blood pressure monitor.

We have home visits from a care agency four times a day to help me with Mum's needs. Washing, pad changing and using the commode. For the rest of the time, it's just the two of us, apart from two budgies and a small parrot.

Visitors, both family and friends, have all but disappeared. They just don't understand Mum's condition, and are afraid because of their lack of awareness of dementia.

Mum is fine in herself, apart from UTIs, which, in the case of many older people with dementia, is quite common. She is still able to communicate, but no longer reads or writes. She does get confused with some words, and this causes some upset and frustration. Her mood really changes when she needs to use the commode. Something she really hates.

The commode has stripped her of some of the dignity she once had. It just doesn't seem right to her, that she no longer goes to the bathroom, something she has done for much of her life. Fortunately, the ordeal is soon forgotten, and her mood changes to her normal sweet and friendly manner.

Keeping Mum occupied is a challenge. She has dolls and soft toys, which she loves, and talks to. I've created an activity box with a wide variety of colorful items, from craft kits, interlocking building blocks, clothes pins, and even colorful shower puffs.

She also has memory box with old photos and items to remind her of her past. These help to jog her memory and get her talking about what she used to do. Much of what she likes to talk about, revolves around a job she had way back in the 1950s, before she was married and well before I was born.

Being in bed for the most part makes eating a little more difficult, especially as Mum now has problems using a knife and fork. Meals are prepared using foods that can be eaten by hand, without the need for utensils, and drinks are provided in sip cups, to minimize spillages.

Of an evening, I sit with Mum watching TV or listening to her favorite music, mainly from the fifties and early sixties. Going out, or eating out is no longer an option. Apart from the visiting caregivers, it's just Mum and me, as usual.

Occasionally a friend does visit, he's going through a tough time himself - his Dad has terminal lung cancer, and is not expected to see the year out. We kind of give each other moral support, and he's pretty much the only one who seems to understand Mum's condition.

My experience of caring for Mum, has taught me things I never expected to learn. It has shown me how rapidly life can change, and how the unexpected doesn't just creep up on you, sometimes it jumps up and smacks you in the face!

My life has changed, and I have changed. In a way, I have cared for people for years, by looking out for junior soldiers in the army. They'd come to me with their problems, and we'd discuss them, but I never expected to end up caring for Mum. You just don't. Mum's are just there, and you always expect that to be the case.

I now do for Mum, what Mum did for me, all those years ago when I was just a child. The selfless devotion she showed me when I was young is now being returned, unreservedly, it is my turn care for Mum. I never planned for it, nor did I expect it – it just happened. Something that happens to many across the world, everyday.

You don't prepare to care - but you can be prepared to care.

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