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?

New Year

Its a new year and next month it will have been 12 months since we moved in with mum. It fells longer, and technically it is. Just looked back on WhatsApp and can see messages to the family back in Nov 2015 discussing carelines, key stores for the side of the house and I think we had our first family pow woow. We just spent most of our spare time at mums, rather than actually there. 

Looking back it also feels we have come along way as a family in our approach to caring for mum. Its reminds me a bit about the first months of having Ella as a baby. You can only read or be told so much and its not until you get your hands dirty (literally sometimes) that you really understand what needs to be done.

Lessons learnt for anyone else who may find themselves in a similar situation

  • Ensure you have the best support around you. If your partner or immediate family are not prepared for the change in circumstances do not try and provide care on your own
  • Ensure you get a good care provider to support you. Good = reliable (they contact you if things change), work with you when things aren’t perfect and react to suggestions or requests (less 07:00 wake ups for example – I need my beauty sleep)
  • Encourage your parents to get an LPA before things go down hill. You can get it registered and only invoke it when you need it. If you haven’t got one and things go down hill, its too late.
  • Try to de-stress all situations if someone has dementia. Asking “why” questions wont give you any help on what actually happened. Just accept the situation in front of you and resolve what ever the issue is
  • Try not to get frustrated. Remember (if you have kids) what it was like looking after a baby/toddler who relied on you for everything, cleaning, food, support, caring, bed time, entertainment etc.
  • Learn what the normal situation is. Trust your instincts. You probably did the same with your child. You knew when they were not 100% and the same applies to someone with dementia. They don’t necessarily know or recognise that something is wrong.
  • One medial condition can look a lot like another. With mum we have seen how her sugar levels, sodium levels or water infection can all affect the way she behaves. Her memory issues are a constant, they become more pronounced when one or more of the other conditions are affecting her.
  • Find a good supply of medical/rubber gloves and for the ladies a good supply of hand cream as you will get dry hands

I’m sure there are more but these are the main ones that I can think of right now.

Happy New Year to everyone and lets see what the next 12 months brings us all. Hopefully an easier 2017 now that 2016 is behind us.

 

 

To tell or not to tell, that is the question

Well today is the day that mum will receive the scan results from her GP. We decided that she should be told, partially as she has mentioned the scan (i.e. she remembered) and it feels like the right thing to do. Not easy however.

How will she react? Shrug of the shoulders, denial or non acceptance, will she worry and become upset. Its got to be a scary thing to be told you have a brain condition and that medical science hasn’t any solution for you. There are a few drugs available that have the potential to slow the memory loss symptoms down but they are not guaranteed and don’t work in all cases. This is one of the items to discuss today.

My biggest concern is that mum will worry that she will end up in hospital or a home and I’m sure this will play on her mind and will need a lot a reassurance from the GP, Sonia and I and the rest of the family.  The fact that we are selling the house so that we fully move in with mum for the long term will hopefully reassure her.

The cheery thought for everyone reading this is that dementia is now the leading cause of death according to the Office for National Statistics –  http://www.bbc.co.uk/news/health-37972141

Unfortunately lots of us will be dealing with these types of similar situations in the future with our friends and family!

brians

 

 

 

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.

 

MRI

To quote the Marx Brothers (I think)  “If you had a brain you’d be dangerous”.

Well today we find out, well not exactly, just the state that mum’s brain is in.  MRI scan (or CT scan) to see if there is any change from about 18 months ago and therefore hopefully receive a formal diagnosis. Does mum have dementia, if so which one.

scanner

Its a strange nervous feeling I have this morning. We have been living with mum for 9 months, and dealing with a change in her health for over a year. All the signs and behaviour seem to support some degree of dementia. Short term memory loss being the most obvious.  She can remember being strafed by a Messerschmitt during the war, but we have to leave A4 laminated cards with the days of the week out so she knows what day it is.

For mum the “D” word was something she didn’t want to discuss and probably except. I remember watching a documentary with mum that Angela Rippon had done for the BBC “The Truth About Dementia” and mum just coming out with the statement “you don’t think I have dementia do you”?  This was in June and mum was basically saying she didn’t think she had a problem.

Two months later she was agreeing that her memory wasn’t as good as it was and that she could see she had a problem.  Admitting it to herself, meant she could say it to the GP, which has led to the scan appointment today.

Whilst it cant be very nice for mum, its also a huge step for me and Sonia. For over 12 months we’ve been caring for mum, pretty much 24/7. Whilst we may not be present 24/7, we worry about the situation when we are not there. Has mum fallen over, has she had an accident in the toilet and not able to see to clean it up, etc etc.

To receive a formal diagnosis will actually be a partial load off our minds. To be told yes she has dementia (vascular, Alzheimer’s, DLB, mixed or MCI) means we have something to understand. Something to research, something to request support for. There are lots of support agencies, groups etc. but they tend to require a formal diagnosis before gaining full access to the services.

Understanding also allows us to plan as a family. Will mum’s memory get worse, what are the timelines, will other behavioural changes occur, what care needs will develop etc. Living with someone with a medical condition, but not knowing what it is, adds a degree of stress to the situation. Hopefully after today we will have some clarity.

The awful thing to say on this however is that mum may not have dementia which obviously would be good news as I would not wish it on anyone. The downside of this diagnosis means that mum is just getting old, she will always be stubborn, cantankerous and difficult at time because she can.

But then living through WWII, bringing 4 kids up, supporting us through our difficult times and providing a loving family environment means she can be all those things.  We will at least know why.

mri

 

A normal weekend

I don’t want to tweak the nose of the gods but this weekend was a good weekend with no major incidents or drama with Mum and therefore it felt like a normal weekend.

Now to blog such a thing seems weird because there is not much to say, but that’s actually the most important thing to say. We had a normal weekend and actually had a nice weekend of doing stuff we would normally do.  No cleaning up after any accidents (mum or the dog) no episodes of stubbornness between mum and the carers and most importantly mums sugar levels are getting back to where they were and physically she is better, less lethargic in the evenings and basically more with it.

This also means that we could focus on us and most importantly, Ella. This is vitally important to me, as I think the family unit would not work over time and stress and worry could lead to frustration. Ella in particular gets upset when she sees mum, Nana not being Nana. We have learnt not to talk about certain things in front of Ella to avoid her getting upset. She is only 10 and there are certain aspects of care that she doesn’t need to know about or see. Ella is also reaching the age where emotions and change will have a bigger impact on her daily life.

The weekend started well with Ella telling us on Friday about her mock SATS exam results, where she attained a high mark (5C) which is above where they should be apparently. Then being selected for a county cricket trial in November (I thought cricket was a summer sport) and finally being asked to perform a solo at pop choir. Personally I don’t think she has a voice for a solo but then I’m tone deaf, so what do I know.

The majority of Saturday and Sunday was spent in a sports centre whilst Ella competed in her club championships, where she was fantastic, shouting and supporting her fellow club members when they swam and posted several PB’s for her races, even getting a county time for the 100m backstroke.

laLos Angeles 2024 here we come (hopefully).

Even popping home during the interval to give mum her tea and check on her didn’t impact our weekend.

So a very boring post, but a very important post.

Recognising good days or just normal days is vitally important to ensure our sanity is maintained, well at least a little.