Tim Barber

Over the last few weeks I’ve been writing about what I see as the seven stages of Alzheimer's. This post is about the final stage, when someone with advanced dementia accepts that they live in a residential nursing home.

Mum refused to settle when she first moved into a residential nursing home. Weeks went by when she would plead with me saying “take me to my home”. Mum was in a mental turmoil and she didn’t know what was going on. She knew something was wrong with her, but her mind had declined so much that she didn’t understand when you tried to explain. This made her quite aggressive and it was very upsetting to see.

We tried telling her a little white lie that she was in a convalescence home where she needed to get better. But she’d have forgotten what you said 30 seconds later and would ask the same questions again. This can be one of the most frustrating things for carers and families, and something that I don’t think all doctors, nurses and healthcare professionals always understand.

At this point Mum could still hold a reasonable, but repetitive, conversation and would love being taken shopping or to the garden centre for lunch. You always had a bit of a fight to get her to go back to the home but this was a small price to pay for the enjoyment she got.

But gradually Mum’s memory has declined further. Although it’s been really sad to see, in a way it’s been for the best as she’s started to accept where she is – and, as a consequence, her behaviour has become less aggressive. The inner turmoil has gradually reduced. She still has bad days, when you visit and she refuses to talk to you, but on the whole, things have gradually become more manageable.

Recently Mum’s even started to make excuses for not wanting to go out when you offer to take her shopping, refusing to leave the home. It does mean she’s fairly inactive, but the home has activity people who try and engage Mum in drawing or looking at old pictures. But she’s often much more content sitting, snoozing, watching TV and looking at magazines.

Whilst it’s sad seeing Mum gradually fade away, at least she seems to have found some peace, which does help. We still visit regularly and the decision to move into a home was the right one for her and has taken a massive strain off all the family.

My last post covered what I saw as Stage 2 “still independent but starting to need help” and this time I’m going to summarise what behaviour changes I noticed at Stage 3  “things are starting to get noticeably worse”. 

Mum was still not really putting herself in massive danger but my brother and I found we needed more and more external help. Most of the challenges were still behavioural and more weird than dangerous, but mum’s physical health worsened, in some part down to the dementia. 

Cooking was one of the big problems and we started to notice mum was losing weight. She would forget to eat but even when she was hungry she had forgotten how to cook.

One of the strange things I remember was arriving, after a two and a half hour drive, to find mum steaming a piece of broccoli on a fork over a steaming kettle. She certainly became good at adapting to get by.

We even stocked up the fridge with ready made meals, but mum became also unable to use the microwave. 

On another visit, I found mum putting the contents of a leftover tin of tuna in her cup of tea. When I asked “why she was doing that?” I was met with the response – “Because I like it!” What could I say, it was strange but it wasn’t going to kill her. Again she was adapting, combining tea and tuna, two things she liked, into a snack. Not sure it will catch on but you never know! 

During this stage, the house started to become more untidy and cleanliness, which had always been high on mum’s agenda, started becoming less important. We noticed an odour in the house, and mum’s clothes and personal hygiene were also in decline. 

Mum could still work the washing machine, but she would wash and dry clothes then put them straight back in the washing machine, without wearing them.

Mum had been on Aricept to help with the dementia, but was regularly forgetting to take these tablets, as well as other medication for problems with eczema and cellulitis infections in her legs. We bought pill boxes with days of the week, battery powered weekly pill boxes with alarms – but these didn’t work and ended up with mum going to a neighbour thinking a fire alarm had gone off. 

We realised we needed help but when we called social services, mum put on such an act of normality, telling the social worker about all the friends she had round for dinner (even though she hadn’t entertained for years), that the social worker assessed my mum as not needing help. 

So I found a local firm of private nurses and paid them to call in for an hour a day, to prepare mum a meal, remind her to take her medication and do some basic cleaning/washing. 

This helped for a while but with mum being massively independent, she would sometimes not let the nurses in. We began to realised we needed to try again to get social services involved. 

I’ll cover this in my next post – where I’ll detail what I see as Stage 4 – where mum “started to put herself in danger” and we knew some tougher decisions were needed.

Every other week there is a headline in the newspaper about the latest way of identifying Alzheimer’s Disease earlier – but with no cure found there’s a bit of a “so what” from people I know experiencing the disease at first hand.

Since my Mum was diagnosed as being in the early stages of dementia in late 2005, I’ve spoken to many friends and friends of friends who suspect that a loved one is going the same way. The same questions seem to be asked – “Well, how did you know?” and “How did it start?”

My Mum had been a teacher and had recently retired. She’d lost my dad years earlier when I was at school, but she led an active social life 100 miles away from us in the Midlands. My brother and I used to joke that she was never in when we called as she was always off enjoying herself – as she was treasurer of various clubs and actively involved with the local church.

Mum used to visit us regularly and loved to come up and see her young grandchildren. It was great for her to be involved in their lives and would give my wife and I a bit of respite – and a well-deserved lie in or trip to the cinema.

It was on one of these trips up North to Leeds that we both noticed that Mum was asking the same question repeatedly. We were planning to go on holiday in a couple of weeks and had discussed the details of our trip to Majorca. It still seems so clear in my memory now the questioning, “So where are you going on holiday”, “we’re off to Majorca Mum” then a gap of about a minute and the same question “So Tim, where are you all off on your holidays” – “Majorca Mum, I told you a few minutes ago” then a bit more conversation about the flight times then “Where have you decided to go on holiday”…the same question being asked six or seven times.

The conversation went on like this for a while, but we didn’t make much of it and put it down to tiredness.

Over the course of the weekend similar repeated conversation were held “So, how is Joe doing at school?”, “Is Joe doing well at school”, “How’s Joe’s schooling going”; “does anyone want a cup of tea” , “no thanks Mum,” a minute later “shall I make a cup of tea for everyone”, “not at the moment thanks” “Cup of tea?”….– all within the space of 5 minutes.

After Mum had gone we forgot about it pretty much even though we thought it was a bit strange. Having been used to teaching and an active social life, we just thought that perhaps living on her own and spending more retirement time during the day on her own, that she had got lazy – and just wasn’t bothering to listen properly to our answers.

Outwardly Mum was the same - smart and elegant, she had no problems helping us prepare food and took great pleasure playing with my kids –so we thought nothing of it.

But after she stayed with my brother a couple of weeks later – he’d noticed a similar pattern of repetition. I called my aunt who lived close to Mum in Aldridge and used to see her every few days – she also admitted having noticed it and again didn’t think it was much to worry about.

On my next few visits to see my Mum or her trips up North – the repetition became more noticeable – and eventually other behavioral changes became apparent which I’ll talk about in my next blog. But looking back now the repeating herself was definitely the first sign – it’s just then we didn’t have a clue what it would lead to.

You can also ready my previous post on 'work life balance challenges'.

Mum has had Alzheimer’s disease now for 8 years. She’s gone down hill a fair bit recently but whilst her mind is virtually non existent, she is still physically pretty healthy and I’m sure she’ll go on for a few years yet.

Other people who I have spoken to in the same boat have had different speeds of decline with their parents, (some who’s parents have been lost to them within 18 months of being diagnosed with the condition), so not everyone will have experienced the long slow decline, as overtime more and more time is needed to care for a loved one with dementia.

With my story, the first stages didn’t really take much extra time to deal with as we didn’t really know what was wrong. There were some strange behavioural changes – repetition and forgetfulness at first, but Mum could look after herself pretty much and it took a while till we realized it actually was the early onset of Dementia.

Then Mum started getting concerned about her money, ringing up daily saying she hadn’t got any, then closing her bank account as she was paranoid someone was trying to steal from her. We then noticed there were final reminders and unpaid bills. It wasn’t a big deal but I stepped in, opened a new bank account, set up standing orders & direct debits and sort of took control of her money.

As she became more forgetful and started losing her keys and getting locked out of the house regularly, it started to become more of a problem. With both my brother and I living in Yorkshire, whilst Mum lived in the Midlands neither of us were around all the time to help. I roped in a small local network of neighbors, friends and aunts to keep an eye out, arranging for a key safe to be fitted and this worked well for a while.

But gradually her health deteriorated, she was forgetting to eat and wash, couldn’t do her own shopping and was starting to require more help. Again, we needed to activate extra help – paying for a firm of private nurses to pop in each day, then activating social services – but it still needed someone to sort out bigger, basic things as she was still living at home.

I’ve got two young kids, as well as at the time owning a third share in a busy business. I’d try and get down every other weekend to see Mum – do a big shop, put new instruction stickers around the home as reminders, do a bit of cleaning, sort her washing and just help try to keep Mum independent. But it was a long way to travel and I was always having to miss doing things with my kids such as watch their sport or take them to the endless parties they get invited to at that age.

Eventually I decided to talk to my partners at work, who luckily were very flexible letting me drop my working to 9 days out of 10 - but in exchange for taking a 10% drop in pay. Then a couple of years later, as Mum deteriorated further, I ended up dropping a day a week – sacrificing 20% of my income.

Whilst it wasn’t ideal for my immediate family to take a hit on salary, it meant that I could see more of Mum, do my caring on a weekday and in some way ease my guilt of not being around all the time, when my aunts and neighbors were having to get more involved on a daily basis.

Gradually as Mum started to put herself in danger, living at home became too much for her and she’s now living full time at a care home in Walsall. Whilst this does give a certain amount of peace of mind for example knowing if it’s snowing Mum will be warm and getting fed – there is still such a huge amount of time needed to support her.

The guilt is still there of wanting to see as much of her as I can, but there are so many other things that have to be dealt with relating to her care from managing what money she has left by investing enough to subsidise her care. (We bought a couple of student flats which we rent out to gain the necessary income). Along with meeting Doctors, hospital visits which she would be traumatised to attend alone without a friendly face there, Memory Service assessments, psychiatrists visits & social services staff who are always trying to find ways of reducing funding in the present climate.

Back in April 2012, after a long chat with my wife I decided that I needed more flexibility to cope with not only the plates I needed to keep spinning with Mum, but also my kid’s commitments especially with my wife working full time and being away a lot. The only way to manage and balance all this was to do something radical.

I found myself resigning from the company I had helped run for 18 years and setting up by myself. I’d be lying if I said it had been easy – but I’m getting by and the work life balance thing has certainly helped in managing things. I still seem to be always busy, but having the flexibility to work on the evening or early morning to make up the time spent either visiting Mum or dealing with the huge amounts of admin stuff she generates.

Never thought 8 years ago I’d be in this position – but I know I’m lucky as some people couldn’t have afforded to make some of the life changing decisions I have…