Swearing.

Not a huge amount to report today, which I suppose is a good thing.


Sarah took mum for a walk into town this morning so I had another lovely lie in. Mum came back in fine spirits, full of coffee and carrying half of Holland and Barrett. I think the fact that she slept right through and being without builders for a day has helped her mood a lot.


I took the advice of fellow blogger Bee and had a good swear today while Mum was out, marvellous. I can thoroughly recommend it as a stress relief. I think I may have invented some new swear words in the process.


It would seem my resolution to try harder on the blog is taking effect, now I just need a determined drive on dementiacarer.com . Dont want to lose the benefits I gained from the help so willingly offered by so many people.


In other matters I have  listed the garage door on ebay and got a little carried away with the listing, worth a read here, made me laugh anyway. 

Wall, Words, Time and Me

We have a wall.

I forgot to take a  picture before the building work started. Hunted high and low and found this one, with my beloved but now departed Capri in it.

The garage on the left is where all the action is taking place. It now looks like this.

The new brickwork is still a little damp, but where it is drying out the colour seems to be matched perfectly. This was a bit of a concern, we want it to blend in as much as possible.

Inside, the waste pipes are all plumbed in for the shower, sink and toilet and the door gets knocked through to the hall on Monday. Starting to take shape then. Hopefully once we can walk through from the house it will start to make sense to Mum. At the moment she is getting very frustrated with not being able to understand exactly how it will all work.

Time.

This is becoming a real struggle. Day, night, morning, evening all seem to be melding into one, but in no particular order. "I might go up" meaning to bed can be heard several times a day, and at any point in the day. Getting up in the night is becoming more regular, I think if she sleeps for half an hour then wakes she just assumes its morning so gets up. I find myself sleeping very lightly as I always have one ear open for Mum, just in case she gets up in the night.

Words.

The words seem to be leaving mum at a fair old speed at the moment. Whether this is a temporary glitch with all the work going on causing confusion remains to be seen. Hopefully some of them will come back when she can concentrate more.

Me.

One aspect of caring for a dementia sufferer that I really haven't dealt with is the psychological effect of  watching the disease eat away at the sufferer. I've never been a great one for expressing my feelings, facts and figures fine, feelings not so fine. To watch your Mum, someone who has always been a pillar of strength for you, gradually slip away is a hard thing to come to terms with. The feeling of helplessness mixed with anger that cant be shown. With most other diseases its easy to discuss needs and requirements of the sufferer, with dementia that gets harder and harder as it progresses, but, no matter how much you feel like shouting and swearing you have to suppress it for their sake. I think I need to learn to shout and swear to clear my system every now and again.

If you have a minute or two i would like you to read this blog written by someone I talk to on twitter. Be warned its a bit sweary but it says a lot of things I would like to shout about myself.

Rome Wasn't Built in a Day

A good book and a comfy chair...


Younger Sis here yesterday, took mum out for a long walk and lunch at one of our local country parks so I chose to sit in a chair and read near enough all day. Bliss. Even better, got to lie in this morning as Fabia still here to look after Mum. Its the simple things sometimes. 

Mum went to bed last night around 11 and stayed there all night! Maybe the long walk tired her out enough? As the weather is still so mild thats something we can experiment with.


Grans Designs...

The garage door is off and the front wall bricked up to window level, window should be in Friday and door knocked throught to house Monday. Starting to get an idea of the space we have to work with. To get the bathroom and bedroom to fit with the fitted cupboards and wardrobes we have to be inch perfect with the layout, so working closely with the builders at the moment. Should get a couple of photos up on here tomorrow.

We have decided on flooring and wall coverings for the bathroom, just the bedroom to go. Mum has taken to wandering in and out every half  hour or so to inspect things , and is still getting a little worked up about what goes where and how it will all fit. A little concerned today that the builders may have forgotten the bathroom but with a good pointing session she is ok now. Till tomorrow.


I am hoping that once the internal wall is in for the bathroom and we are knocked through from the hall it will become much easier for her to understand. At least she has grasped the fact that it may take more than a day to finish the job.



 Anybody want to buy an up and over door?

 

Grans Designs.

The builders have arrived.


We now have a large hole in the ground at the entrance to the garage. Tomorrow this hole will be filled with concrete.Then a wall will be built on the concrete and a window fitted. With the addition of a door or two and some studding and plaster this area will become mums new downstairs bed room and walk in wet room.


Planning for the future.


At the moment mum is physically in good shape. Stairs are not a problem, but at some point in the future this will change. We have decided to make a bedroom and bathroom downstairs and hopefully get mum settled in and happy while she still has the capacity to help with the planning and design. Hard work though, dementia sufferers are not the easiest clients.


The bathroom will be a wet room which can be easily modified to enable a carer access to help with showering as and when the need arises. This is one job I really dont think I could feel comfortable with. Dont know if other carers feel the same?


In other matters.


Night and day seem to be blending into one at the moment. From the moment tea is over we begin. Upstairs for a few minutes to reappear in pyjamas, a little bit of telly then up stairs to get dressed again. All accompanied by "what time is it" over and over again. Mum can change half a dozen times on a "good night" Sometimes she wont settle till 2.00 - 3.00am.


Mornings are becoming a little strange lately too with a very disoriented mum knocking on the bedroom door at silly oclock asking for help. The conversation normally consists of  such things as :


"Theres nothing"
"Theres no-one"
" I tried and there was nothing"


We think she may actually be sleepwalking, something she has been known to do in the past, as she doesn't really respond, just makes the same statements over and again. All the more reason to get her settled downstairs as soon as possible.


Also Mum is taking longer and longer to "get going" in the mornings. She will eat breakfast and drink a cuppa but she isnt really in the room till probably mid afternoon. Dressing is getting a little haphazard, with inside out jumpers, back to front trousers and shoes on the wrong feet starting to make more regular appearances. Hopefully the move downstairs will be accompanied with a "simplification" of mums vast museum of outfits charting the history of fashion for the last 30 years.


On a slightly lighter note..old hoppalong the dog managed a walk unaided around East Carlton Park. If you havent met my dog have a look here and you will understand why this makes me so happy.

Christmas catch up.

Oops.


Sorry. I see it has been three weeks since I last put hand to keyboard and bored you with my tales. The website seems to have stalled temporarily too. New years resolution..rocket up my own arse I think.


The build up to the day..


The build up to Christmas was fairly uneventful this year with the extra spare time I have nowadays. Fruit and veg and most of the gift shopping done online leaving plenty of time to plan Christmas day for 10 and Boxing day for 16.


Interspersed with the Christmas planning we  also liaise with builders who start work in January converting half the garage into mums swanky new en-suite. 


Mum gradually gets more and more excited on the build up to Christmas day and the arrival of elder sis Julia with Ian and the boys. Sarahs 3 arrive at various times leading up to the day and the house starts to feel cosy and seasonal as the decorations, trees and lights go up inside. Luckily no more climbing involved for me.


The big day..


Lie in till nine then up for pressies...Mum very excited to have a stocking all to herself. In pre Dementia years it was so difficult to buy gifts for mum as by her admission she already had two of everything she needed, so this year we went to town with a stocking full of bits and bobs. She loved it. A good hour of unwrapping bath bombs, gloves, scarves etc. Tears, smiles and laughs all rolled together, brilliant.


Cooked breakfast, then start the prep for dinner to be served at 6 pm.
Mum kept out of trouble for another two hours peeling sprouts and chestnuts, just finished as Julia and Family arrive for even more pressies.


Dinner a raging success, Pheasant in a duck in a turkey with all the trimmings, followed by Christmas pud and an assortment of cakes. Then the cheese board with some vintage port.


All in all a great day was had by all. I think.


Boxing day...


Today heralds the arrival of younger sis Fabia with Mark. Also we have a visit from my Godfather Lloyd with his wife Kay visiting from France. We hope to negotiate a stay in the summer so mum is instructed to be on her best behaviour. Lloyd and Kay bring along daughter Polly and her antipodean partner Matt.


Huge buffet out on the table, left over three bird, home cooked ham etc. another great day. A few tears again from mum, joy not sadness which is always good.


Far too much food, far too much wine, all in all a great family Christmas. Mum enjoyed all of it and seems to remember a lot of it too.








In other matters, I was approached by Elinor O'Neill the reporter who wrote about my blog in the local paper to make a guest appearance on her blog where she describes her struggle with bipolar. You can have a read here.

Words

Words


Never take them for granted. We spend a lot of our time in conversations. Spoken, written, typed even signed. They are all words.


Dementia takes the conversations  away. Sometimes it leaves all the words but no ability to string them together. Sometimes, as is the case with Mum, the words disappear first, leaving the conversations locked inside with no means of expression. This quite often results in bouts of frustration, maybe even anger when she wants to tell or ask something.


Today has been one of those days. Mum was out in the morning with  the respite carer,  visited a garden centre looking at decorations. She is always in a good mood after a morning with Donna, as am I after a morning "off"


Quick visit to see the lovely gentleman for coffee then home. Mum disappeared upstairs for a while, probably to top up the nut mountain while I started to prepare tea. 


We then had a good two or three hours of  Mum trying to tell or ask me something. We just cannot get to the bottom of it. We tried all the usual methods to no avail.


It could be something as simple as her wanting to visit somewhere or something as complex as a desire to learn astro-physics, there is no way to tell. 


Sarah in from work and she can shed no light either. In the end we had to switch to the diversion tactics of food and me acting the fool. This does have a relatively good success rate and worked like a charm this time.


It seems that if Mum manages to convey her thoughts straight away there is no problem, but as soon as she stops or struggles the thread is lost, mostly never to return. I think I will try to bring this up with her tomorrow as it did seem to be something important.


An example from this week,

• "Its red I cant see it"
• What is it mum?
• "Its red, it was in the thing"
• What was it in mum?
• "Its red, you know..."
• Repeat ad infinitum

Anyway she is watching that funny man with the hat (Fred Dibnah) on the telly happy as Larry, so Sarah and I can settle down with a glass and a bit of radio

Tree climbing hippy

CHRISTMAS IS COMING




So that's why I am up a tree.
















At some point last week Mum decided we should have lights in the tree in the front garden. Being the good son and accomplished tree climbing electrician that I am I decided if I kept very quiet for a day or two the idea would go away. As luck would have it of course, although mum struggles to remember what day it is the lights just wouldn't be forgotten.


Google, "exterior led xmas lights", checkout and they are on their way. Arrive Tuesday but even an accomplished acrobat like myself shouldn't climb in gale force winds and torrential rain so another days respite.


Wednesday use the cunning "shall we go somewhere nice for lunch" ploy, followed by "shall we have a nice drive out to Medbourne" on the way back. Very enjoyable day but on our return "what about my lights"


Today, no wind, no cloud not even any sign of impending rapture so I cant put it off any longer. I'm meant to be a tree hugger not a tree climber but out come the ladders and here we go. Three hours of balancing and swearing, six sets of lights and  smelling slightly of pine sweat and fear I am done. Luckily Mum stayed very close to the ladder in case of emergencies, although not too sure what her plan was to rescue an overweight hippy plumetting to earth from a great height I felt strangely reassured.


All finished just as dusk approaches so we stand back and hit the on button. Hard to tell what shone the brightest, the lights or Mums smile as she saw them.


As I pack the ladders and bits and bobs away Mum stands on the corner pointing to the lights, waving to cars pedestrians pigeons and anything else that takes her fancy "look......look...... lights" lovely.


Sarah in from work at seven with fish and chips with curry sauce, Mum staring through the window at the lights, no mention of the weekend away and 1985 on radio 2....all in all a great day.