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.



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.

4 weeks later

Our 2 week holiday resulted in a 4 week recovery time but the good news is mum is pretty much back to where she was before our holiday. However it feels like we need another holiday to get over the shock of the last 4 weeks. Why did things change so much?

The reality is one small physical change can have a massive knock on effect and the treatment to fix that one thing also has a knock on effect and its seems only time can allow everything to be resolved.

To treat the return of the high sugar levels, a new tablet is prescribed. The tablet basically makes the kidneys work harder to remove the excess sugar in the blood and expel it through extra toilet trips.  However extra toilet trips means means other complications that need treatment with sore bottom, which means creams, which means painful sitting down, which means less likely to get up to go to the toilet, which means less mobile, which means, which means, which means………

The mental stress of dealing with the unknown everyday is probably the hardest thing to comprehend for people that haven’t experienced it. For those with children, remember how it felt when your baby would not stop crying for a few minutes or even an hour.The sense of helplessness whilst you checked the things you knew could be wrong. Is he/she hungry, dirty nappy, tired or teething or worse but you don’t know. However, you fix it and they stop crying and you can forget it. With mum it doesn’t stop, it just changes to a different issue to resolve, to create a coping strategy or to get medical help with.

That feeling of helplessness is similar with mum. We wake each day not knowing what the day will bring. Morning routine is helped by the carers coming in, but I worry that if mum refuses to co-operate they can’t force her to do anything. So I leave them to it each morning, I go to work and for the first hour each day wait for my phone to go and find I have to rush home from work.

At the end of the day I pick Ella up from after school club and for the 2 minutes it takes to drive home I stress about what we will walk into. Is mum OK, has she fallen, is she confused and sitting on the stairs not understanding where she is (last weeks weirdness), does the bathroom need cleaning because she can’t see very well to know whats happened. These are the daily anxious thoughts that I go through, and I suspect to some degree so does Sonia.I hope Ella doesn’t. Sonia and I work very hard to ensure she doesn’t. We have started to avoid talking about this stuff in front of Ella as shes not stupid and we don’t want her to stress about it. Its not right for a 10 year old to have to worry about adult stuff. She worries anyway as she loves her Nana and doesn’t want to see her in a home or hospital.

So this is a positive blog post as mum is back to being more herself (stubborness and all) but it just highlights to me what the new normal positive level is, still stressing about when things go wrong again.

I’m off for three nights with the guys on a Rugby Vets Tour this weekend. So Sonia is flying solo. I know she will deal with everything as brilliantly as she always does, but it doesn’t mean we both won’t stress about it.


Road Trip

Its the May Bank Holiday weekend and like many others we are hitting the road for a trip to the coast. The Dorset coast to be precise.

Dawn's Early Kiss at Old Harry

Mum is actually quite excited and more importantly keeps mentioning it and remembering that we are going. Its taken quite a few days of reminding her or challenging her to remember but again this approach seems to eventually result in a longer term memory being created and therefore she remembers.

However a simple day trip to the sea side (West Bay) with mum needs some prep work and reminds me of when Ella was a baby. Gone are the days of simply jumping in the car, wallet and phone is all you need and off we go.  I now need a mental check list of things to consider and do in advance and on the day.

  1. Remember to cancel the lunch time carer visit on Saturday  a week in advance otherwise mum will be paying for something she doesn’t need
  2. Ask the neighbour to look after Sophie (chocolate lab) because mum will worry about her and want to leave at 2pm to get back for the dog
  3. Consider supplies for the way down.  Ella would be happy with a bottle of water and some fizzy sweets. We might need a flask of hot tea for mum and a biscuit
  4. Route plan.  When my dad was still able to and driving mum around, he would need the loo fairly frequently and as a result would know all the restroom locations on all the routes he took.  I now find myself worry about where they are for mum. Luckily my bladder is still able to hold on for a couple of hours.
  5. Change of clothing. Most parents with a baby will carry around a bag containing spare nappies, wipes, dummies and clothing. Whilst mum would not appreciate the dummy we still need to take a bag of spares. Accidents happen to everyone and as you get older the chance increases. The bag will probably be bigger than the baby bag as we also need to take a range of clothing depending on the weather and include a rug.

Whatever happens it will be fine, Sonia and I have a relaxed attitude to things like this and we love visiting Dorset and seeing family. After Wiltshire its the next most beautiful countryside in the UK. The cream tea that mum is expecting/demanding is just the icing (clotted cream) on the top.

Being a good parent to a good parent

Being a parent is not always easy. Lots of things get in the way. Your child, how you’re feeling, work, money, health, stress and your own up bringing. I know my approach to being a parent to a 9 year old daughter is heavily influenced by the way I was brought up. The strongest memories of my childhood interactions with my Mum and Dad tend to relate to incidents where I have retained the lesson and often find myself applying it today with Ella.

Manners – they cost you nothing but are worth their weight in gold. These were high on Mum and Dads, (Dad’s in particular) hit list.  “Remember your P’s & Q’s” when you went to someone’s birthday party, holding the door open for ladies (or anyone for that matter) and the less well known, walking on the outside of someone along a path to protect them from being splashed! These are all second nature habits that I now do as a result of it being drummed into me when I was younger. I remember Sonia wondering what the hell I was doing the first time I circled around her to walk on the other side when we crossed a road.  Now she teases me if I don’t do it.

Ella now has my list of good manner behaviours to deliver against combined with some of Sonia’s (not calling out from one room to another for example).

However what do I do when mum breaches the protocols that she helped set. Last night was a classic. A friend of ours popped round and we chatted in the lounge whilst Mum sat at the dinning table having supper (deliberate gag for those that know). We were mid conversation when Mum piped up with “I’ve finished, can I have my pudding”. For those of you with good manners you will spot several issues with this.

  1. No “excuse me Tim” to politely interrupt the conversation
  2. No “Can I have my pudding PLEASE”.
  3. or better still “Tim, sorry to interrupt but when you have a chance, do you mind getting me something for my pudding please, don’t rush though I can see you are chatting”.

But here’s the real dilemma, what do you do with your 86 year old mum to get her to mind her manners. You can’t. You laugh a bit, you take it and know that your friends around you understand and don’t think any less of your Mum, you might tease her a bit to make her laugh and just hope that your Daughter distinguishes between, what we teach her and what her Nan does can often be at the polar opposite end of the good manner scale.

Being a good parent to a good parent is knowing what is needed and when and letting lots of things go and to focus on the good stuff and relish the time you have with them.

GT x

Doing something right

queenWell we must be doing something right. Physically mum has put a bit of weight on, which being only about 7 stone, this is a good thing.  Secondly we no longer need to inject her with insulin as the daily sugar levels have remained in the single digits, through a combination of better diet and tablet medication.  Given that she was on 24 units of insulin in January it shows what a good diet can do for diabetics.

She also appears to be a bit happier, or to put it another way, less fed up (see previous blog). A strong royalist she has enjoyed watching all the programs involving the queen, staying up late and remaining awake to watch them. Mum has always talked about getting her telegram from the Queen on her 100th birthday so I took the opportunity to see if this was the plan. “Oh yes, you need to contact her and when it comes I want the picture (it comes with a picture of the Queen apparently) and the telegram framed and put on the wall above the fire place”!

So I have my instructions that I need to remember for 14 years and hope that her majesty keeps going until she’s 104. Mum doesn’t want a telegram from Prince Charles. So if your Majesty is reading this, please keep going past your 100th birthday as I’m not sure I could cope with mums disappointment.