The Long Good-bye

The Long Good-bye

“When are you taking me home?” she says

That question again!

“You are home Mum, safe and sound”

“What day is?”

That question again!

“It’s Saturday today”

“Is Ella at school?”

“What day is it mum?”

“I don’t know!”

“It’s Saturday today so no school”

“Ah ok, are you taking me home soon?”

Mum is home safe and sound but not always there

Dementia is slowly taking her away

It’s a journey that can take a long time

Each day, each week, each month the journey starts again

You know it, but luckily she doesn’t

You don’t say anything but inside you are

Over and over again

This is the long goodbye

Bed sores – a pain in the arse

I haven’t posted for sometime. Combination of lack of time and effort but also didn’t have the urge to rant. Well I do now.

Quick background catch up. Roughly three weeks ago mum was getting out of bed, aided by the carer, when she felt unwell. Carer called and by the time I got home from work (thankfully work is very supportive) she had also called 999 as mums breathing was shallow. Couple of minutes later fast response car turned up and the outcome was that mum had an irregular heart rhythm. Off we went to RUH. 

A day spent in A&E followed (portable battery helps keep the phone charged whilst I keep an eye on work emails) resulting in mum being kept in as they wanted to monitor her on new medication to thin the blood. Next day they released her and mum came home and all seemed well. Mum was happy and we thought back to standard routine. Within 1.5 hours, mum had slipped in the bathroom and fractured her hip! Off to RUH again and this time a longer stay whilst they operated and replaced half her hip.

Surgery went well and the surgical team discharged her. This is where the fun starts.

Having Alzheimers, diabetes and a heart condition is not a good combination (if there such a thing), especially in a strange environment. I realise that hospitals are under a lot of pressure and budgets are being cut etc but I also understand the call for better management to help ensure that the budget is spent effectively. I am not going to get into the politics of this, I have friends and family in the NHS but I can see with my own eyes things that are inefficient.

My biggest observation is a lack of joined up care, with poor or no information between teams and so time and effort is wasted on finding facts. Worse when facts are wrong and assumptions made about a patients needs.

Mum was eventually transferred to a nursing home in Chippenham and again lack of quality information between the various teams involved. When visiting mum was lethargic and unresponsive. The response from the care team was she had hyperdelerium (had to look it up). However when we asked what her sugar levels were we found they hadn’t taken them and when they did the level was 2.8. This is very low and previously has resulted in a trip to RUH for hypoglycemia. So as they ran around trying to find a chocolate biscuit etc we went and bought some lucazade and managed to get her sugar levels back up.

Over the next week we continued to deal with care issues. The team mentioned that mum needed help eating, well when shes lying horizontally in bed, she wont be able to feed herself. “Shes not very mobile” and yet we managed to get her up and walking with a frame on her own with not that much effort.

The most recent issue is she now has a bed sore, again when you leave her in bed for hours on end through the day, or she goes to bed at 7pm and stays there for 14+ hours what do they expect. Again this care cycle could easily result in mums health regressing and ending back at the RUH where she occupies a bed, needs to be seen by Drs, Registrars, Consultants etc. She will now need regular district nurse visits to come out and dress the wound, again unnecessary care costs resulting from poor care management (in my view).

So, Sonia and I have agreed that we need to get her home as we can provide a better level of care as we understand her requirements. Luckily my boss/company is supportive and has allowed me to work from home for a bit so I can be with mum during the day and continue her rehab with regular walks around the house and leg exercises, better diet and therefore get her diabetes back under control and most importantly for mum, back in her home in surroundings that she is used to.

Its a new challenge for Sonia, Ella and me but its got to be better than leaving the care to the professionals!

Daily Conversation

I have not posted for some time. Mainly because I have not felt the need to. We continue the roller-coaster that is caring for someone with dementia and I guess we are getting better at absorbing the low points.

The other day was particularly frustrating however and we seem to be in a funny place at the moment. Could be the heat, could be the next stage of dementia, could be water infection or who knows what. The frustration stems from daily conflicts between us.  We try to keep things simple and consistent for mum with the focus on keeping her safe and healthy. However this becomes trying when she does not always co-operate or her mind is playing games.

The following is a fairly accurate word for word conversation mum and I had the other day. We have these on a daily basis, often along the same subject and often with no conclusion.

“Hi Mum how are you?”


“Hi Mum, you ok?”

“Yeah I’m ok.”

“Where’s your water?”

“Well it should be here, hold on… oh um the chap that called in, he took it.”

“What chap?”

Now I’m starting to worry. Buglers, muggers etc all happily let into the house probably.

“The one that was here this afternoon.”

“Ok, I’m pretty sure no one was here.”

“Yes they were.” “Well if there wasn’t anyone I must have put it in the kitchen when I went out”.

“Went out! Where have you been. You know you should not as you can’t walk very well unaided. Didn’t you see the signs on the front door saying don’t go out?”

“Yes, I ignored them. I went out and down the road.”

So further panic and I check the front door bell camera to see who has called and if mum went for a walk. Luckily neither event had happened.

“Mum you haven’t been out and no ones called in. Don’t worry about it, just get your water cup from the kitchen and drink some as you haven’t drunk all afternoon and it’s very hot.”

Mum gets up and makes her way into the kitchen. 2 mins later comes back, no water.

“Mum what did you go into the kitchen for?”

Silence but she continues to walk to her chair in the lounge.

“Mum what did you go to get from the kitchen?”

Silence, starts to sit down

“Mum don’t sit down, you’ll only need to get up again.”

Sits down.

Mum where’s your water?”

“In the kitchen.”

“Ok so you need to get it and drink it.”

5 mins later after getting her water cup and sitting back down, mum gets up again and goes to the loo. After a while I hear the stair lift coming down.

“Mum come into the kitchen so I can cut your nails over the sink.”

Mum walks slowly into the kitchen.

“Mum have you got a pad on?”

“Of course I have.”

“Ok I’ll check, …no you haven’t so you need to go back up and put one on.”

10 mins later she comes back down. As she walks back in to kitchen –

“The electrician that was here this week, has he finished?”

“Mum the electrician was here about 6 months ago.”

“No he wasn’t, he was here a couple of days ago.”

“Two days ago was Sunday and he was here in February, it’s now July.”

“Is it Tuesday then, not Thursday?”

“No Mum, what do the day cards say?”


“So what day is it?”

“Well I thought it was Thursday.”

Sorry that a convoluted conversation isn’t that interesting to read, or funny or entertaining but this is the reality of caring for someone with Dementia.

Dementia is not just a memory issues, it’s a brain processing issue. Logic and reason don’t exist as you and I see it. A normally functioning brain will process things automatically. We do things with out thinking necessarily about them. You do and say things with out a thought as it’s just instinct. Dementia seems to stop this automatic process.

Well that’s how I see it in Mum.

With an ageing population more and more of us will end up like this. Look around your family and friends. 1 in 10 of us by the age of 65 will get it. If we are lucky enough to get to 85, 1 in 6 of us will get it.

Be nice to your children! They will end up dealing with it one way or the other.

A home not a prison

I remember watching a BBC documentary about a family learning to cope after the 50 something year old dad was diagnosed with dementia. They used cameras around the house to document his behavior and family interactions.

Two scenes remain with me. One where the camera’s show the dad walking around the kitchen opening cupboards and eventually stashing his coat under the sink. Cut to the same camera shot several weeks later where his daughter and wife find the coat and wonder how it got there and realising he must have done it in a confused state.

The next scene I recall was the family talking about the strategy they came up with to stop him walking out the front door.  They basically hung a big curtain across the front door to make it hard for him to find his way out as the door was hidden from view. it worked as they showed a night vision clip of the dad getting out of bed in the middle of the night and looking for the front door.

Well we may be getting to this point. We came home this afternoon to find the front door open. Immediate panic sets in. Luckily mum was still in the house, sitting on the sofa. However she had her coat on and her walking stick in her hand. Basically she was preparing to go outside and initially could not remember why but thinks she wanted something from the shop around the corner.

Those of you with elderly parents or grandparents may not worry as hopefully they are still capable and able to walk reasonably well.Mum however has to walk with a frame around the house, claims she is nearly blind and when you then factor in the memory issues, you can hopefully understand why this is a bigger challenge for us.

I wonder if there is a app similar to “Find my Phone” for “Find my mum with dementia”.

I can see her wondering off and not knowing where she was going and not remembering where she lives.

So we now have to think about strategy to keep her safe. So again a list for others to consider in a similar situation.

  • We’ve added hooks to the cupboard where mums coat is stored to try and deter her from putting her coat on with out someone to help
  • We’ve add a hook to the larder door to deter her from helping herself to food that she cant see properly. We had another incident of mum look for sweets and finding and partially eating a chicken stock cube

stock cube

  • We have internal cameras and a front door bell/camera to hopefully see if anything happens and which way she walks if she does go outside.
  • You can buy GPS trackers which she could wear but knowing mum she would take off as it would get in the way.
  • We could get those wrist bands that you write your mobile number on that schools etc use when kids go on school trips in case she does wonder.

What I don’t want to do is make the house a prison as it is our home, but I need to keep mum safe. We can’t lock the doors as carers need to get in, and what happens if there was a fire or something that mum did need to get out of the house on her own. But then I wonder if she would react to the smoke detector.

So Google do your best and give me some suggestions. I wonder if you can fit door catches that lock but automatically release when the smoke alarm goes off and can be opened by a key from the outside.

What I find disappointing is that with NHS funding constraints and a desire to encourage people to stay in their homes as they get older, finding solutions to these common challenges in the day of connected homes isn’t easy let alone cheap.

I wish I had time, resources and skills to invent solutions to these problems as more and more of us are going to need them in the future.



Maintaining the sweet spot

I’m about to give the commentators curse.

Mum seems to be as normal as she can be at the moment. No UTI (sorry, medical info), sugar levels low (ish) and her ability to process info is relatively good.

It’s amazing how important and emotionally invigorating it is to be able to hold a lucid conversation with Mum. How a random, out of the blue sensible question from her, shows that’s she’s still with us.

Keeping her in the sweet spot is the key and something we work really hard at. If she only had dementia it might be easier. Diabetes, poor eyesight and regular urine infections make a difficult situation that much harder.

Looking after someone with dementia is very much like having a two year old. You have to have all your wits with you and constantly assess what’s going on medically to maintain that sweet spot. A two year old will throw a tantrum when you get it wrong. With Mum you spend weeks feeling frustrated, angry and confused about what is wrong until you find out what’s changed.

Then the cycle to get back to normality can start again. A two year old moves to a 3 year old and then 4 etc. Mum stays at 2 and that’s on a good day.

Evolving care techniques

I haven’t written for a while and in a way thats a positive in its self. This blog was originally a way for me to process my thoughts and a way to off load. The other part was to document our family journey and provide an insight to what’s involved for caring for someone with Alzheimer’s.

So I find myself writing not to off load but to capture recent events and my coping strategy.

Mums health continues to fluctuate. We recently found out by chance that she was experiencing chest pains, following her mini heart attack in October. So we now have to think about diabetes, poor eyesight, UTI’s, salt levels, thyroid and her heart. It feels like we could open a pharmacy with the amount of tablets we have!

Mums memory and thought processes remain the most trying however and it’s these that generate the most frustration for us.

Days of the week – previously we thought we’d solved this challenge by making memory cards with the days of the week to help Mum know what day it is. This has worked for nearly a year but now Mum doesn’t believe the cards are correct, even though we change them every day. So the new solution is to simply agree with what ever day she thinks it is. Sounds cruel but it saves a silly argument.

We also seem to be experiencing more memories about her parents. Where are they, when’s my dad getting home from work, what’s his name again. Again strategy is basically to lie. Something suggested by the Alzheimer’s support person suggested. Rather than simply say they are dead, we deflect or tell a half truth. Where dad, he’s not here, not home right now and then move the conversation on.

We also get moments of clarity and joy. There is a TV series with Timothy West & Prunella Scales travelling along canals and rivers. The first week we watched it with Mum as they were on the Norfolk Broads and Mum recognised the places we had visited last year. At the end Prunella, who also has dementia summarised how the sound of water lapping on the bow of a boat was a joyous feeling. Mum had a massive smile on her face and just said “I know what she means and completely agree”.

The following week Tim and Prunella were in Europe travelling on a river to Salzburg.

Mum was watching for about 10 minutes and then perked up and said – “oh it’s that nice couple we met on holiday last year in the Norfolk Broads”

Moments of clarity but mostly confusion

Mums turning into Alf Garnett

I haven’t posted for a while, mainly because I don’t want to keep repeating the same “woo is me” message about the issues looking after someone with Alzheimer’s. So this post is more about the challenge of caring for someone with Alzheimer’s and an 11 year old daughter and where to draw the line about bad behavior.

Now mum is 87 and I was brought up to respect my elders. I do and having survived the war etc you could argue they have the right to say what they want. Hence the reference to Alf Garnett. The comedy in those days, actually relied on inappropriate comments about race and other social issues. Doubt if the BBC would commission the series today.alf

However where do you draw the line? Not sure if its Alzheimer’s or simply old age that allows the normal standards of behaviour to disappear.

Remembering to wash hands after the loo or covering ones mouth when coughing – we have a constant battle to remind or chastise.

Feeding the dog, left over food even though shes constipated with sweet corn. Again each time is a promise not to do it, but then the cameras showing mum do it. Even saying to the dog, “don’t say anything or you’ll get me in trouble”! So she remembers she mustn’t do it, but does it anyway. Her dog, her decision, we just have to deal with the crap – literally.

And then the comments that we really hope Ella knows are inappropriate – “Well she won’t win “Strictly Come Dancing as she’s too fat” “Shes right she looks like an Elephant and dances like one”. No feminism, stand-up for your sister in mums world.

Luckily Ella does take it in her stride and is old enough to understand the difference between what’s ok and what’s not. She’s actually better at handling it than me and finds it funny and puts it down to mum being old.

So may be thats the answer to the question. If you are old and earn the right, you can get away with a bit more than others and I need to be a bit more like Frozen – “Let it go, let it go”.

Bruce why did you have to die when we were on holiday?

You’ll understand the title eventually.

I haven’t posted for a while and that’s partly because things have been relatively good without major incident or new behavioural changes. Which is good news.

We recently had a holiday to Spain without mum and this time, rather than up root mum to a rest bite care home, we organised carers to come in 4 times a day, the extra two being in the evening to give her a meal and help her into bed.

My sister popped in each day as well so that mum had some family company as well and ultimately be available to the carers should they need her which was great as it meant we could relax on holiday. Its easier for me to relax as my personality is such that I only worry about the thing that is actually happening, rather than create a raft of scenarios that may or may not come true but still worry about everything as if it already has. This really helps because anything can happen with someone suffering with dementia.

“Expect the unexpected but don’t plan your life around trying to fix it before it happens – GT.”

Randomly mum wanted poached eggs for lunch one day rather than the Wiltshire Farm Foods ( – highly recommend for anyone else in similar situation) that the carers normally give her. With the CCTV camera we can see the poor carer, searching around all the kitchen cupboards trying to find the poacher and then mum decides to get down on all fours and look her self.  She then struggles to get back up!

So not a scenario we could have predicted and therefore provided the carers with advice with. More worrying is mums thought process, which again we can’t predict. She also was planning on leaving the house to buy some eggs and more scary would be mum deciding to cook for herself. May need to switch cooker off to ensure she doesn’t burn herself or the house down by forgetting she’s left something on the hob.

Second incident was the day before we were due back and one that we have seen before, Mum refusing to go to bed when the carer arrived at 8:30pm. This was Bruce’s fault as there was a special tribute programme on the TV that mum was watching.  Again not something we could have foreseen and therefore given advice on how to deal with the situation.

If we were at home, we could obviously have put mum to bed later or suggested recording the program but carers have 30 minutes to get things done and some are better than others at negotiating with mum.

The moral of the story or blog. Think laterally about what mum might do differently as the disease progresses in particular how to keep her safe. The camera’s in the house and the front door, certainly help as it allows us to see what really happens as mum doesn’t always remember.

However we can’t predict everything so don’t worry about it or change our behaviour in the off chance that something may or may not happen. The next British TV legend death or royal event may happen at any time and we could be on holiday again.

Father’s Day

It was father’s day recently. Ella was lovely, with hand made cards and presents.

However over the last couple of weeks I’ve questioned whether putting my daughter and wife in the firing line with mum, means I am a good father/husband.

Now this blog post isn’t a self pitying, wow is me, friends send me lots of messages saying its ok,  you are doing a good job, keep going etc but a true reflection of actually how difficult things have become and the reality of what I’m thinking.

Before I off load I have to say I know none of it is mums fault. Alzheimers changes you, mainly how you behave. Carers have to deal with it. We have to deal with it. Again, this blog is partially to help when (not if) any of our friends find themselves in a similar situation.

All of us deal with stuff. Work stuff, relationship stuff, baby/kid stuff or health stuff (yours or someone else’s). Thats life and we get on with it. We get depressed, we get upset, we get angry. We get home and off load to someone, the other half usually and if they are good, listens, reassures and tries to provide solutions.

So everyone reading this, remember that worst day. Picture getting home ready to explode at the smallest thing. Then you have to deal with someone that is has basically lost all the basic controls that an adult has, mentally and physically.

You have to get a cup of water coz its been left in the kitchen all day and its one of the hottest days of they year and dehydration makes mum even more confused. You say it again, “please remember your water”. “Are you wearing a pad, have you washed your hands, yes its Tuesday, no Ella isn’t swimming, yes I’m Tim, no the dog is not out with Derek, shes in her bed and if you opened your eyes you’d see her”!

So you are now more wound up. You then see a little smirk on her face and thats it you lose the plot. Is the smirk because she realises what shes being like. Is there still an element of being a pain that shes likes and because she can. You have to walk away but the frustration and anger is obvious to everyone around you.

Next you are having a shouting match with your ten year old daughter about nothing only to find out shes also really upset and struggling living with mum. Shes had to deal with finding mum trapped in the downstairs loo and not able to help. Shes been worrying that when shes on her school residential this week that something is going to happen and she won’t be at home after school to help mum. Thats when you really feel guilty.

How can you be a good father when you 10 year old is seeing stuff lots of adults don’t want to see or deal with.  She should be having the time of her life having fun. Last term of school before secondary, SATs done and a week away from mum and dad on a school trip and shes worrying about her Nan. Yes its lovely that a 10 year old thinks like this and shes a tribute to how we’ve raised her, still doesn’t make it right.

How can you be a good husband when your wife is being the principle carer for your mum and has to deal with a load of other crap outside of home as well. As a bloke (sorry feminists out there I’m old school) its my job to protect my family, to provide and keep them safe. I’m not saying women can’t or don’t do that, its just the way my brain is wired.I still hold the door open, I like to pay for dinner and I walk on the outside of the path to stop Sonia or Ella being splashed by a car.

I don’t think I’ve experienced this many ranges of emotions in such a short space of time in my life. What makes it worse is, its not going to get better, its not going to get easier, only harder. The frequency of mum confusing me with my dad is slowly increasing. At some point we will have to make a decision about continuing to care for mum with everyone’s best interests at heart.

But what is the trigger point. How many more tears does it take, or shouting matches, or just the sense of depression hearing the same thing over and over again, trying to make mum do things differently. To wash her hands, remember to drink water or to stop making that shuffling noise across the floor because she cant walk very well.

I wonder if Alzheimers is one of the hardest conditions to care for (I know its not a competition). If mum was physically disabled you wouldn’t even think about trying to change her, or get frustrated coz she had an accident. Mum just looks old, still spends time at home alone, watching TV and takes herself to the loo, chats to people etc. There is nothing obviously wrong with her and maybe thats actually that hardest part for us.

Remembering she can’t remember, that her brain doesn’t work properly.

Ironic really, we have a memory problem that makes caring for someone with Alzheimers even harder. X


We’re gonna need a bigger boat

I suspect everyone comes back from holiday, goes to work and instantly forgets the previous week and feels the need for another holiday.

We’ve just come back from a weeks holiday on a motor cruiser on the Norfolk Broads with mum. We deliberately selected what we thought would be a suitable boat, where mum had her own cabin with an on-suite, Ella in her own room and Sonia and I in our cabin at the front (bow). The boat was great, however some of the practicalities of caring for mum made it difficult. Space in the cabins and toilets doesn’t help with the physical element of helping mum to the loo or washing. To be fair they probably don’t have a boat that would have been suitable.

We coped (to a degree) and mum said she enjoyed it and the holiday was really great. We enjoyed it as well but the reality is we had to provide care services through the day, whereas 5 days a week we are at work and technically get a break.

The physical elements of helping mum up and washing on there own are one thing. Normally mum walks with a frame. On a boat this is not possible so its various handles, galley work surfaces or old school holding hands had to be called on. Getting mum to walk is a challenge in its self.

Getting mum on and off the boat was interesting, and must have caused amusement or concern for any other boat watching. Standing between the water and mum, to stop her falling in, whilst she shuffles sideways along the back (stern) of the boat worked, but in hindsight could have been a nightmare if she had slipped. Not sure she would have recovered. The cold, the shock, the difficulty lifting her out etc. Stressful for me as I took on this element of care.

However, more challenging and one we hadn’t thought about, was the mental elements of coping with someone with Alzheimer’s constantly over 7 days and its worth understanding this for anyone considering it.

The new environment, triggered new questions from mum.

“Where is the other person that’s with us”?  “There is 5 of us”? We assumed that she was thinking of Dad, but had to simply reassure her that everyone was present.

“Have you let my mum and dad know I’m here and safe”? Again we’ve learnt just to tell a little white lie and reassured her that we had called them and told them.

Bizarrely we didn’t have the usual questions about the time or which day of the week it was. Mum remembered some of the locations we tied up at and how to play patients and showed Ella the game so in other ways the holiday triggered new memory recalls.

We (or rather Sonia)  also had to do the role that the carers do 7 days a week of getting mum up in the morning. With no washing machine on board, it adds a level of complexity, washing pyjamas in the sink. Again something to consider for anyone going on holiday with someone with care needs. Actually its very similar to going on holiday with a toddler with the amount of extra clothes and extra supplies you take to be prepared for any eventuality/accident.

As a family we did enjoy the location, the activity of driving (motoring) around the Broads and seeing all the wildlife and views. Seeing a wild Otter is a once in a life time moment. However we definitely need another holiday. Selfishly, without mum. Flipside of a second holidis we will no doubt still worry whilst on holiday about whats happening with mum in our absence. Again something else to consider. Once you start caring, you cant switch it off, no matter what you try, or other people say or do for you.