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.

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.

 

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

 

Post when things are good

Sonia keeps saying I need to post when things are good as well as bad as otherwise its a one sided view of our world.

Now I hope this post doesn’t tweak the noses of the dementia gods but things are generally good.

We have booked a family holiday with mum to the Norfolk Broads for a weeks cruising. Theory being mum spends must of the day in her arm chair snoozing, she can spend a week on a boat in a chair snoozing whilst the world goes by.

We  have also attended a local support group for carers, which was interesting but didn’t provide a tonne of new information. It did provide info on where to hire a wheelchair from and also highlighted the plight of a dozen or so other carers. The wife with a husband with multiple cancers and organ issues, the more mature carers who probably have their own issues but care for their elderly parents and finally how everyone is pretty much muddling along not knowing what they don’t know or should know.

In some way I hope some of the things we come across and I blog about will potentially help some of the readers/friends and family that will experience some of these challenges for themselves in the future. Whilst I don’t want anyone to, the law of averages says some will.

The other positive was a meeting with a lady from the Alzheimer’s Society. She was not only able to give technical information about what mum is experiencing, she also gave it to us in simple understandable language. The fact that mums brain has lost the ability to filter things out in a logical way so she is fighting to process everything at once must be horrendous for her. Noise and images from the television, mine and Sonia’s conversations, dog wandering around, house environment, children, questions about which meal to have all spinning around in her head at the same time and trying to process them.

Simple things such as family meal time where we talk to each other. At home this is easier for mum, but we think it would be nice to get her out somewhere, but the reality the noise and different surroundings make it a nightmare.

This is all whilst mum is “normal” i.e sugar levels where they should be, not water infection and the sodium where it should be.

So as my mum would say, touch wood we are all good at the moment.

Brazil vs Hollywood

This post is not about our 2017 holiday destination. Its about hair.  If you are squirmish (is that a word) or easily offended, say reading about pubic hair. Read no more…………

A recent conversation made me and Sonia laugh and this blog needs to have funny moments in it and not just doom and gloom.

Hair removal is a funny thing generally when you think about it. I remember growing up and practising shaving my face in the bath with my dads razor and a bar of soap. Its a sign of maturity I guess when you have to shave. Then when you get older, its a pain in the arse. Expensive too.

Ladies hair removal is even more extreme. Legs, arm pits and other areas. Hence the title.

Removing pubic hair is a very personal thing. Its a very private area and so its not really the done thing to walk into a barbers and ask for a wet shave. The technology around pubic hair removal is also varied. Waxing, shaving & immacing/veet and others help with the process.

But somehow I don’t think any of this is appropriate for an 86 year old lady. Its probably not really appropriate to talk about it in a blog but then we are encouraged to talk about death, dementia, mental health etc. so surely we can talk about pubic hair removal.

This is where Sonia and I were laughing. I won’t go into specifics only to say there are times when things get messy and having no hair in certain areas would help make cleaning up a lot easier, and probably less painful. Imaging pulling a plaster off and taking a load of hair with it.

This resulted in us talking about hair removal and the thought of taking mum to a parlour (or whatever the lady equivalent of a barber is) and asking for a Brazilian. I’d love to see the expression on their face. However its really not something that I will ever feel appropriate to ask my mum about so we’ll just manage as we do.

However when I’m 80 I wonder what I’ll go for crack, back and sack?