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

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 ring.com 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 (www.wiltshirefarmfoods.com – 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.

Easier said than done

Facebook is full of rubbish a lot of the time. What started as a convenient way to stay in touch with friends, share pictures of whatever is important in your life. Show you proud family moments off and hope your friends agree that little Jonny is cute, that the beach looked relaxing and that there is some form of group recognition of events of a drunken night based on the photos someone took on their phone.

Increasingly its being used as a news outlet medium where opinions on whatever is the burning issue of the day is presented as fact (or fake) to friends, where discussions can take place, or arguments started. Not sure Facebook is as much fun anymore. Where are the cute cat videos?

It can also have nuggets of information like this –

These points are very true and offer good advice to anyone trying to communicate with someone with Alzheimer’s. In practise its easier said than done.

I guess human nature (or just me) finds it easier to argue, especially when the facts are staring you in the face. For example, mum and I argued over which day it was.

Mum – “Well I thought it was Sunday” “No its Monday” “Are you sure” “Yes mum. What does the card next to you say that we made to help you remember which day it is” “Monday” “So what day is it Mum?” “Monday I suppose” ” No suppose about it, it is” “Well I’m sure its Sunday”. Give me strength!

How can you agree its Sunday when its Monday.

Sonia and I go through these scenarios on a daily basis and have to remind each other about the approach we take when we slip into auto response mode and get it wrong. Even this is hard to take from each other when you know we are just as bad as each other at times.

With work stress, school stress (SATs week) and all the usual stresses that modern life brings its important to keep everything in perspective.  Politicians will come and go. They are all right and all wrong all of the time and non of the time.

What is important is to look after each other, talk through our experiences as a family unit (including Ella) and take time out for each other. This is where our friends and family come into the picture and really help. They probably don’t realise it but just having time out for one night, getting drunk, having a laugh over a curry, watching a game of rugby or some other activity is worth its weight in gold.

Demise of Ashley

My northern monkey friends will know the story line from Emmerdale and maybe some of the southern shandy drinking idiots do as well. Basically a main character in Emmerdale for over 20 years, the local vicar, Ashley has dementia. He’s about to die from pneumonia having left the care home due to his memory etc. It is very sad and yes I’m pathetic and do get upset and shed a tear at these types of story line.

ashley

Looking after mum, makes story lines like this very personal. The writers are very good and I’m sure expert advisors are used to make it as real as possible and it is. However they can’t go to into the finer details. They also can’t represent every scenario or symptom, as every person with dementia will deal/cope with it in a different way.

What is good is that a large audience gets an insight into a family dealing with someone they love, deal with this disease. Its the family around them that has the hardest task. I’m not saying this to highlight what me and Sonia are doing but to highlight to our friends and family that read this that they may have to deal with this situation. To understand it better through story lines in things like Emmerdale can actually be really helpful and I would recommend it. However what you see is probably 10% of reality.

Love to all

 

How do you tell your mum shes not 40?

That’s the reality of caring for someone with dementia.

Little things have a big impact on you.

Last night mum couldn’t remember Sonia’s name, yet this morning she was fine and almost surprised when we checked she could.

Tonight she thought she was 40 and going to work tomorrow.

The impact is you worry that the dementia is progressing. You get upset as you see someone changing in front of you and there’s nothing you can do, your own plans get put on hold (sorry 4 C’s I could be with Sonia and Ella tonight to stay with you) and you suspect that mum gets upset herself but can’t understand why

I’m hopeful it’s a water infection as I’m slowly becoming an expert on behavioural changes and the root cause. Her sugar levels are good and in single digits, she’s hydrated and fed but her appetite is lower, she’s wobbly so hence the urine infection diagnosis which then creates the confusion.

The challenge for the weekend – England to beat South Africa, Lewis Hamilton to win the Brazilian Grand Prix and to get a urine sample from someone that can’t really stand up, who doesn’t know she’s going and can’t go (nor could I to be honest) with someones in the bathroom wearing rubber gloves holding a sample bottle under ones bottom.

Scan results – we have a diagnosis, now what?

So the Dr contacted me to let me know that she had received the results of the scan. As a result of the scan and the general deterioration of mums memory of the years that the GP has known her, allows a diagnosis of “mild age-related cerebral atrophic changes”.

Google tells me – Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means a decrement in the size of the cell, which can be due to progressive loss of cytoplasmic proteins. In brain tissue, atrophy describes a loss of neurons and the connections between them.

Image result for mild age-related cerebral atrophic changes

In simple terms the diagnosis formally confirms mum has dementia.

So now what. Nothing has actually changed since we received the news. Mum is still mum, even planning ways to gain access to cakes and biscuits (apparently she intends to walk around the corner to the Co-op to buy some as we don’t have any).

We can at least register with the various support groups for Alzheimer’s and understand more about the potential future and how things may progress.

My personal dilemma is do we tell mum? What benefit would mum get from this. It may cause her lots of distress at the point of telling her, only to forget the next day. Could it cause her to give up knowing it will only mean her memory will eventually get worse and make her less independent. Or will it create more questions that cant be answered as dementia is not an easy thing to understand, especially about what will happen next.

At least she’s not just being difficult for the sake of it and for Sonia and I we can gain support and at least have something to attribute some of the less pleasant aspects of caring for mum to. It helps to deal with situations knowing its a disease you are fighting against.