Wednesday 15 May 2013

A year in the life of a carer for a loved one living with dementia

My life changed at the beginning of 2012. Prior to that, although I was even then a carer, albeit part-time, I was still able to work and socialise. However, as a result of a number of incidents late in 2011, it became increasingly clear, that work and caring was no longer an option.

Mum had started to wander. Fortunately, on the few occasions she did, she did not venture very far. The worst was when she was found wandering outside the apartment block where we then lived, freezing cold, and having no idea where she was, and how to get home. She was discovered by a salesman from a nearby bathroom showroom, who knew she lived in the block, and helped her to the Caretaker's apartment, where she was given a hot drink and then taken back to our apartment.

The Caretaker rang me on my mobile. Unfortunately, the company I was working for had a strict policy on mobile phones, so, although the phone was on silent but vibrate, I was not able to answer the call. Shortly after, I received a text informing me I had a voice mail. When I was finally able to use my phone, I discovered, to my horror, what had happened.

After contacting the Caretaker, I was at least assured that Mum was now safe, and back home.

Clearly, I had to make a life-changing decision. This was all just before Christmas, 2011.

After Christmas was over, I handed in my notice, and ceased full-time employment in January 2012.

Even though I was now a full-time carer, I still didn't consider myself as such, and received no outside help or support. I still "pretended" I would be able to find some kind of work that would also allow me to continue caring. It was also becoming clear that Mum was starting to have difficulties with stairs. As we then lived on the second floor of a block with no lifts - finding alternative accommodation became imperative.

We moved to our new apartment at the beginning of August 2012. It is in a small block of four, on the ground floor, level access throughout, wheelchair friendly doors, and complete with a wet room.

I managed most of the move myself, with the help of a few friends. Everything, so far, seemed fine.

At the end of September, Mum was taken into hospital with a suspected TIA. She was kept in for a few days for tests and assessments, had some of her medication changed, and then discharged.

There was one further wandering incident, early in the morning, whilst I was still asleep. Fortunately, the local postman (who lives just across the way), was on his rounds, and brought her back. It was the first, and probably the last time, that Mum would be delivered by the Royal Mail!

Mum's condition continued to change (I suppose deteriorate would be more appropriate - but that is a little negative), and her mobility began to diminish. As the result of a number of symptoms, and complaints from Mum, I called the local surgery several times, asking for a Doctor to come and see her.

What happened next, is almost unbelievable! Yes, a Doctor did come to see Mum - and as a result of her complaining about a pain in her shoulder, probably caused by a number of near falls - she was prescribed with painkillers. Also, because of the number of calls I had made to the surgery, the Dementia Crisis Team was called in. This was not for Mum, but for me!

They arranged for a carer to come in to see Mum first thing in the morning. A few days later, when the first carer arrived, Mum's condition had worsened - to the extent that she'd now spent the last couple of days, confined to bed.

The carer was shocked by Mum's condition, and immediate arrangements were made for a Doctor to come and see her. The Admission Avoidance Team was also contacted, and they (two nurses) arrived first. They both agreed that Mum had a UTI, and was severely dehydrated - this of course, should have been diagnosed by the GP, who had visited just two days earlier!

When the Doctor arrived, he also agreed with the diagnosis of a UTI. Mum was once again admitted to hospital. She was put on a drip, and had a catheter inserted. I was now very concerned, even frightened, about what might happen next.

During her stay in hospital, she was moved between a number of wards. Some of which were excellent, some less so. She, of course, had no idea why she had been moved - nor for that matter, apart from one occasion, did I.

The worst experience, from my point of view, was when visiting one day, I went straight to the ward Mum had been in the previous day, only to find the curtains drawn around the bed she had been occupying. Panic mode set in! I took a quick look behind the curtains, in the bed was a little old lady, being attended to by a Doctor, and clearly unresponsive. This, was the stroke ward. Fortunately, I saw enough to establish that that little old lady, was not Mum.

Mum had been moved to another ward - after midnight - to free up the bed for the lady who had had the stroke. No-one took the time to call me, and let me know.

Mum's stay in hospital would last three weeks, during which time further tests and assessments would be carried out. Medication was revised once more, and arrangements put in place for her to return home.

Those arrangements involved a community bed (hospital bed) with air mattress, hoists, commode and wheelchair, along with an initial rehabilitation care package, lasting six weeks. This would then be replaced by a continuing care package from another agency. I was also given training, albeit briefly, on the use of the hoists.

Her discharge was delayed, thanks to the District Nurse team failing to order an air mattress in time. In fact, they had claimed to have placed the order, but no such order appeared on the system. A system also used by the Occupational Therapists planning Mum's discharge. An urgent instruction was issued for the order to be made for next day delivery.

Once all this was in place, Mum was returned home. I breathed a small sigh of relief.

Her stay in hospital, whilst helping to assess Mum's condition, did not help her in other ways. Only one ward provided the care and attention required by a dementia patient. In the others, she was effectively left to fend for herself when it came to eating and drinking. If she refused to eat or drink, or take her medication, this was recorded as "patient being difficult". If she got angry, or lashed out, because she was frightened and confused, this was recorded as "aggressive behaviour".

Once home, I, along with the agency carers, was able to provide the more understanding, patient centred care needed.

My life had now completely changed. Working was definitely out of the question. I now had to put in place claims for Attendance Allowance (higher rate), Carer's Allowance and Income Support.

Whilst at home, Mum began to improve significantly. Her skin was creamed everyday. The once very dry and flaking skin on her legs, as a result of her UTI, dehydration, and stay in hospital, became smooth and soft, once more. Encouraging her to eat and drink was difficult to start with, but this improved slowly over time. Initially, I had to spoon feed her, but she is now able to do this for herself - with the aid of items originally designed for children, including drip-free sip cups, spoons and feeding bowls. Medication is taken, when required, with no significant problems.

Mum suffers continence issues, and needs to wear pads at all times. These are thankfully supplied as an integral part of her care package.

She spends most days in bed, but with the summer now approaching, the plan is to get her into the wheelchair more often, and take her outside. Living close to the sea, there is an easily accessible path right next to the beach, and a beach front cafe within easy walking (and wheeling) distance.

In her room, she has plain, but brightly coloured bedding. A TV, a DVD player, an activity box, a cuddly toy box, and a memory box. There are old photos on the wall, including pictures of her Mother (whom she often wants to visit), my late Father, a much loved Golden Retriever we once had, Mum herself, when younger, and me.

I always make sure she has fresh flowers, which she loves, and there a three flower pictures on another wall. Her favourite items are two baby dolls. She loves them and talks to them as if they are real. (Doll therapy - a subject I will cover later).

All of these things help her to keep calm, and feel happy and secure.

My days now follow a pretty set routine. Up in the morning to make us both a cup of tea. Then helping the first carer of the day, wash Mum and change her clothing and pads.

On the subject of clothing, before Mum returned from hospital, I found three polyester kaftans, that she had bought a number of years earlier. These have proven to be perfect, as both a substitute for a nightdress and as day clothing. Being very loose fitting, they are easy to put on and take off.

Next, it's breakfast and medication, along with another cup of tea. Off to check emails, Twitter, Facebook, a carers' forum etc. Then the next call from the carers. This visit, is more often than not simple and speedy. Check Mum's pad - change it if needed, cream Mum's arms and legs, and face if she wants it. Commode, if needed.

Then lunch. In the winter months, this would often be soups, specifically those with a higher fibre content. Now, with warmer weather, it tends to be sandwiches, these nearly always contain salad leaves, along with other fillings, using wholemeal bread.

Any washing that needs doing, is placed in the washing machine, including her absorbent bed mats. Then, subsequently, into the tumble dryer (low heat for the bed mats).

In the afternoon, I normally get a little time to go out to the shops (only around seven minutes walking distance away), to buy any essentials, and have a short break for myself.

At around four in the afternoon, the next carer arrives. Similar routine to lunch time, unless Mum needs the commode - which rarely happens when the carers are around.

Dinner comes next, this is usually either spoon friendly food, or finger food.

At around eight in the evening, the last carer calls. Again, a similar routine to lunch and evening, check pad, change if needed, settle for the night.

On the subject of the commode, Mum still has no routine. So such a need can occur at any time. Being in bed for the most part, Mum's appetite, whilst now healthy, means she does not need to eat as much as she would if she was still mobile. So bowel movements only tend to occur every few days - until yesterday that is, when suddenly it was two days in a row.

Need for the commode can occur at any time, day or night, and invariably, as I have already mentioned, rarely occurs when the carers are around. Fortunately, Mum is quite small, and I am able to carry out all the related duties, on my own. It does however mean, that I need to be around pretty much all of the time.

Mum's demeanour is, for the most part, happy and friendly - it is my intention to try to keep it that way. Her carers very much enjoy the time they spend with her, and look forward to seeing her - which can only be good for all concerned, Mum most of all.

Socialising is now out of the question, unless people visit us. This of course, hardly ever happens. The stigma of dementia, results in many, including family, who would have visited before, now staying away. I am sure if I asked them to visit, they would come up with a multitude of excuses as to why such a visit would not be possible, "at the moment".

Without modern technology, and social networks, I would now be completely isolated. This would very much have been the case for carers, in the past. Were it not for my blogs, the likes of Twitter and Facebook, and more importantly, the carers' forum, of which I am a member, my life would be very lonely indeed.

A great big thank you, to all of you out there, who have helped me to maintain my sanity, and find at least a little virtual respite, from my demanding role as a carer.

Most important of all, thanks go to Naboo, my little Jenday Conure (small parrot), who provides endless hours of entertainment, and loads of affection.

As a footnote, I would add, as a result of an initiative started by someone who has dementia, a regular on both Twitter and the carers' forum, I contacted my local NHS Trust. In the next couple of weeks, their Dementia Nurse Specialist will be visiting us, to discuss their initiative surrounding care for dementia patients, in their hospitals. And, to discuss any suggestions I may have, and any help I can give.

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