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.

 

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

 

 

 

3 strikes and you’re out

From previous posts you may recall we have spent two nights away from mum since we moved in, back in February.  Both times we came back to an issue due to Mum not fully complying with our requests to work with the carers to ensure she is safe, fed and watered. I can understand why but it doesn’t help us.

First time she refused to go to bed as she wanted to stay up. We arrived home after a long journey close to midnight and found mum on the sofa, half asleep and then had to get her into bed when a carer had been in at 9pm and basically did nothing other than let the dog out.  They can’t force mum to do anything she refuses to do. Actually no can we!

strikeSecond time the carer actually got mum into bed, let the dog out, locked the house and left mum tucked up in bed safe and secure.  We then found out that mum decided to get up from bed, navigate her way downstairs in the dark to get her handbag. “A handbag” ( I hear you cry in an Oscar Wilde stylely). The handbag that can stay in her bedroom for weeks without being needed. The handbag that doesn’t contain anything of value except her disabled parking permits. It was so important that she risked falling over in the dark etc. and remaining there until the morning carer came in. I know handbags are a girl thing but if I’m honest it was mum doing safety checks because there had been a stranger in the house at night and she probably wanted to ensure she had left and not stolen her handbag.

This Saturday will be the third attempt as we are going to a friends for a BBQ.  Whilst we are only technically down the road from Mum I wanted to ensure that there was a degree of normal behaviour for us as a family. Also for our friends which is to go to a house BBQ and stay until the end, slowly getting drunk and enjoy ourselves, rather than not drink, leave part way through, do mums tea, go back to the BBQ, drink a little bit and again leave to help Mum into bed and then come back to the BBQ.

So we have arranged, as before for the carer team to come in on Saturday at tea time and again in the evening to help mum into bed. We will run through the plan with mum on Saturday morning (any earlier and we would have had the same conversation every day or even every couple of hours). We will leave her handbag in her bedroom, we will remind her that she committed to doing as we and the carers ask to ensure she remained safe.

However the biggest test for Mum and more importantly the new living arrangements is that we can have a night away without issue so that Sonia and I know future nights away will be possible as we can’t spend the rest of the years living with Mum and never spending the night away from her.

GT

Altzeimers – does it help with the pain of loss

I’m guessing all the BBC programs on altzeimers is to do with it being (or it was) dementia week. Lots of interesting information on the science, coping strategies and health techniques to keep it at bay, lots of sleep apparently.

Mum defiantly has signs of early stage dementia with short term memory loss being the obvious sign. As Angela Rippon said, you can’t get annoyed or challenge why they don’t remember. Just keep answering the same question as if it’s the first time you’ve heard it.

This isn’t the point of this post.

I’m wondering about other effects on the human brain as we get older. 12 months ago mum was fed up. She clearly missed Dad. Not that us Smithers’s say these things but she was. We all do.

Is dementia a way that the brain protects us in our later years. Love has got to be one of the most powerful emotions for a human to process. Dealing with the loss of someone that has been your soul mate, best friend, lover (sorry can’t think of mum and dad like that) partner in crime, the person that makes you laugh etc must have a physical effect on your brain.

If I lost Sonia or Ella or a great friend or a close relative, I know I would lose part of me. People that are that important to you form a part of you. When they die you feel it. Does this result in unknown effects on the brain when you get older.

I know the scientific community would point at brain scans and show the build up of extracellular deposits of amyloid beta (brain plaque) as a cause of Altzeimers. What triggers the build up in the first place. Genetics? Diet? Chance?

Fall off your bike and grazing your leg results in blood which clots and forms a scab allowing the skin to repair beneath.

Does the pain of the death of a loved one graze the neutrons on the brain and trigger a physical response that makes the plaque that the scans are seeing.

I’m sure I’m talking rubbish (I usually do). In a way there is some comfort to think mum is not sitting at home all day long thinking about short term memories of Dad and what happened towards the end, but remembering long term memories from when they first met. Holidays together, bring us kids up, grandchildren and “the good old days”.

I think I could cope with getting old (older) if my memories were just the good stuff and the bad stuff faded away.

Like father like son, or like mother!

Unfortunately I can more see more of my mothers temperament in me than my dad’s temperament. My dad was stern, quiet until he needed to be loud (very loud) but more than anything, I now realise how patient he was, (in the main).

Dad always seemed to not hear things as well as you would expect.In the end he had a hearing aid. I think he played on this to avoid confrontation with mum.  He knew he couldn’t win and he would always be wrong. I, on the other hand don’t have this poor hearing excuse and secondly have all my mums ability for arguing the why and wherefores of any situation.

I need to learn that mum will still always win and shes probably earned the right.

Tonight I was trying understand why she was unhappy about something. I tried all my best people management techniques of trying to rationalise why things happened the way they did, but to no avail. Everyone else is at fault, no acceptance that she could be wrong and the discussion ended with a  “I’m now watching the Invictus Games so the conversation is over”.

Dad probably learnt this in the early years of their marriage (57 years). Mum was always right, pick only those battles you know you can win and take the easy route for a quiet life. Mum is definitely getting back to her old self and therefore I need to be more son like father than mother!

 

 

How To Stay Young

Mum turned 86 yesterday, on the same day that the BBC’s new 2 part programme started, How To Stay Young. Episode 1 covered the obvious, diet, exercise and stress.

BBC’s How To Stay Young on iPlayer

Now I wouldn’t say mum is a young 86 year old, happily walking around the corner to the shops and planning her next Saga cruise, but she is still mobile. Even if a walking frame is required to keep her on an even keel. So what’s her secret elixir of long life. Well I would suggest it starts with genetics and what’s in the blood line first of all and then what environment you grow up in. If you are dealt bad genes in the first place then I would suggest you will still have less chance of longevity.  A healthy diet and exercise will help, but the cards your dealt are still the only ones you can play.  If your parents smoke and your brought up in difficult circumstances this will just compound the issue, again in my non scientific opinion.

Dad died in his early 80’s and Mum’s now mid 80’s so you could say they have good stock. They never drank to excess (occasional wine with a meal in later life) and only a pipe or occasional cigar when dad was younger. So what else can we consider as influencing their timelines.

Diet – mum was never a brilliant cook. She didn’t enjoy it and so did the basics to provide a hearty meal to Dad after work and the test of the family.  I remember growing up and knowing what meal I would come home to based on the day of the week. Monday = shepherds pie (using meat from Sundays roast), Tuesday = pie of some sort (using rest of meat from Sunday), Wednesday = toad in the hole or sausage and mash, Thursday = stew or casserole (potentially using meat from Sunday) with Friday always being Fish.  Saturday was probably the only hard day to predict but with only a few options left, e.g. faggots or chops. Sunday was always a roast and this then set up the meals for the next week.

This meal choice was at least home cooked, so no processed meals and with plenty of vegetables so fairly healthy and therefore probably helped.

Exercise – again mum and dad were not sport mad but enjoyed an active life and supported us when we wanted to play sport. Walking was the way of life. You walked everywhere. Around the corner to the shops, over the fields with the dog and into town to visit the library. Holidays always had walking built in, whether it was walking to see a steam train, a stately home or simply to get to the top of a mountain or the other side of a lake.

Stress – Growing up during WWII could never be labelled as fun and must have been stressful. Never knowing what the next day or even hours would bring. You then have the post war period, dealing with food rationing, national service and financial recession as the country tried to rebuild itself. Dad worked for the MOD and eventually through promotion was fairly high graded and again, managed people and equipment etc. so would have had stress at work. Mum stayed at home until we (the children) started university. Financially we were never well off but they worked hard to support all 4 of us and still have money for a summer holiday and presents for birthday and Christmas.

So reasonable diet, active lifestyle and moderate stress and they hit their 80’s. I’m sure these elements combine along with upbringing to help you to stay young but I think Dr Chris van Tulleken made the important statement about things in moderation but ensure you enjoy life.  Mum and Dad loved each other and created a loving environment for all of us to grow up in. I find myself trying to remember how they did this and wanting to replicate it with Sonia and Ella. This is the real elixir of long life, enjoying what you have around you, at the time you have it and not looking back with regret when its too late.

We all eat the wrong things at time, we can all do more exercise and life is stressful, you just learn to cope as well as you can. The trick to living longer in my view is to enjoy everything as much as you can. If something makes you unhappy, do something about it. Yes moan for a bit, but then do something or get over it and look for positives. Never be a half pint full kind of a person as you will miss out on years of your life when you could have been enjoying it!

Reverting to childhood

As we get older our bodies change. As a baby the sutures or anatomical lines where the bony plates of the skull join together can be easily felt, over time the fuse together as the infants body develops.  Emotionally and physically babies are highly dependant on their parents for everything including food, warmth, security, emotional wellbeing, love and attention.

Puberty then kicks in. Earlier for most girls than boys and with it a whole host of trouble. Body parts change, smells and hair grow and emotionally you can be all over the place and you don’t want anyone to help you with anything, “I’m fine”.

Other landmarks come and go, birthdays (18th & 21st) weddings, divorce, midlife crisis and eventually old age.  At some point along this life graph we start to revert to previous stages for our needs. These manifest themselves as emotional and physical requirements that are either mildly or strongly demanded.

Lets take some of the physically requirements for my mum.

  • Heat – the house is a permeant sauna, even with multiple layers on and the availability of blankets the central heating is always on apart from late at night. We all have dry skin as a result and the amount of hand cream being consumed is vast. Hopefully as the outside weather warms up we can reduce the radiator temperature and help reduce the UK CO2 production.
  • Food – Ella is nearly always hungry and I would suggest any healthy active child should be as they continue to grow and develop. The type of food they eat is the problem and one that leads to obesity in children.  I have no problem with Ella munching on something health, every time she says she’s hungry. Mum on the other hand craves her biscuits and cakes, which for a diabetic whose sugar level was recorded at the peak of the equipment’s limits shows how bad it was. The good news is that her appetite has improved since being on insulin, eating two hot meals a day and even trying to steal a crisp or two.  Even funnier when its a monster munch pickled onion flavour crisp which she doesn’t like but took it any way.
  • Strops & stubbornness- Probably the hardest child like behaviour to cope with is stubbornness and stroppiness. A parent can simply send a child to their room to think about their behaviour. When it’s your parent, what can you do. Nothing is the easy answer and one that I’m slowly learning. Similar to being a parent of a baby, you learn to read the signs. Body language gives a lot away and a reluctance to answer a direct simple question is a clear indicator that the conversation is over and the subject is closed.

Eventually I’m going to see if there are any support groups locally. Not that I currently feel the need to get answers from a guru or have any major concerns. More of a way to see if others are experiencing the same sort of thing with their parents, as their care needs evolve and change through the next emotional and physically stage of this rollercoaster we call life.

Stress – there’s lots to worry about

It’s amazing what things can play on one’s mind. Life is short and yet I suspect we spend a disproportional amount of time worrying about stuff that’s already happened or about stuff that may or may not happen sometime in the future.

This morning’s stress point was, when is J (initials to protect the innocent) arriving to get mum out of bed?  Now this shouldn’t be a big deal.  I have confidence in the new care provider as they have been 100% perfect and have arrived +/- 5 minutes of the scheduled time.  However this morning, I wasn’t sure what the scheduled time was as this week’s rota hasn’t arrived.

It wasn’t 07:30 as this time had been and gone so I assumed it was 08:00.  So what to do. Shower, get Ella’s breakfast or stay in bed all whilst worrying about mum deciding to get up on her own. Which is a strange thing to worry about.

Before moving in with mum, mornings were a series of pre-set movements (not the bathroom type movements) that were designed to maximise the amount of time snoozing in bed.  Now I’ve found that I don’t need to stay in bed, or rather I’m not staying in bed, probably due to the various thoughts circulating in my mind. Is mum OK? Is she awake? Has she had an accident in the night that needs sorting? This list is endless and yet somehow you have to point the thoughts to one side as they will consume you and take over.

Think about what you do know. Mum is in her room and you haven’t heard any noise that would indicate she is trying to get up, or worse has fallen out of bed.  Ella is down stairs playing with the dog and seems to be having fun, so all good.  The carer is probably coming at 08:00 so you have 15 minutes to shower and dress (carers have enough to deal with dressing mum they don’t need to see me half naked, plus this could leave to all sorts of issues).

So showered and dressed I made my way downstairs and got Ella breakfast and mums ready so that when she does come down, it’s all ready to go like a military operation.  08:05 J arrives and mums morning routine begins and I can relax. This reminds me how bad it was with the old carers. We had no faith in them arriving at all, let alone at a time pre-agreed or worse a time that worked for mum. 10:30 one morning, only to be told the next carer was coming at 11:00 and could they get the washing out of the machine – no as its still going!

If anyone is reading this and they are in a similar situation with caring for an elderly parent, I have two pieces of advice.

  1. Find and develop the best working relationship you can with a professional care provider. I suspect the vast majority of carers, like nurses do the role as they enjoy caring for people. They are not going to make a fortune I suspect on their wages. You couldn’t work the hours or handle the health issues if you weren’t dedicated.  What makes a difference to the family is a company that supports its care workers and you with all the other bits.  Good, timely communication. Reliability and a trust between you that what they say they are going to do, actually happens. If Ronseal did careering, our provider would be it. They allow you to get on with the rest of life.
  2. Focus on stuff that actually needs to be worried about. Tangible stuff that will make a difference and that you can actually control. Like Sonia’s 40th birthday.  I have 159 days to think, plan and execute something – loads of time.

Stair Lift

So mum has had a stair lift fitted. Basically leg power and general stability, remains poor so we thought a stair lift would at least mean she would be safe walking upstairs to the bathroom.

However in the words of Apollo 13, “Houston we have a problem” as mum can’t remember which button to press in which order. It’s the small things that challenge us.

So it’s a case of reassurance, repeat and reaffirm. Step 1 sit in chair, step 2 press button to move chair up, step 3 release lock to allow chair to swivel around 90 degrees.

Today we had success. Mum announced that she had made it up stairs on the chair on her own. “It’s very slow” as she shuffles along at a snails pace. “Yes mum, it needs to be safe” as it speeds her upstairs. Success. However power swivel upgrade coming next week so she only needs to remember step 1 sit in chair and step 2 press button to go up.

Day 7 in the Big Smithers Household

Well the first week of the new regime is coming to an end. Touch wood its been ok for everyone. No major drama, no major issue – medical or physical and we haven’t killed each other yet.

Mum came home on Friday 26th February 2016 and our journey together started.  I have to say my wife (and best friend) has to be the most caring and best wife any man could have.  There can’t be many women that would be happy to consider not only living with their mother-in-law but to also act as their primary carer along with their husband and all the fun this entails.

Our daughter has also shown how mature a 9 year she is. We have tried to make her feel part of the process and also to make a fuss by making her new bedroom special with new furniture (2 storey bed/desk combo, carpet and a lick of paint on the walls). She also has a new friend to play with, namely my mums dog, the dopey chocolate Labrador.

The first week also included the establishment of the new carers that have taken over from the abomination that called themselves a care company, who we used during December/January. To say they have been outstanding is an understatement. Regular communication and detailed setup by the company management/owners and hardworking individuals that come in early to help mum get up and again at lunchtime for some company and food. I hope a long and effective partnership between us all will develop as we learn what works and what doesn’t.