Time Off

Had a lovely day yesterday with my cousin and his wife (and their utterly squeezable granddaughter). Tiring for mum though as she was convinced that the M62 was a new motorway, we went to see her sister (who has Alzheimers), went out for a meal and she had several glasses of wine.

Today I'm heading back to Devon for a couple of days and then spending the weekend in Cheltenham. Lovely Betty who lives across the road will check on Ma tonight and give her her medication. My brother will pick her up tomorrow and take her back to Rotherham until Monday when I pick her up.

There will be tears this morning but so be it. I will leave her food in the microwave for tea and prime it so all she has to do is shut the door and wait for the ping.Will ask Betty to check that she eats it...

See you Monday!

Easter Sunday

Despite being a lifelong churchgoer, naturally this morning she'd forgotten all about it being Easter and was most confused when I gave her some chocolates with her morning cuppa. I think she thought I'd lost it (that's irony for you Alanis). St. Anne's was very very busy today of course, practically standing room only! Good sermon and some rousing hymns to sing. These days Ma tends to consider church to be a bit of a social club and will wander over to talk to people so I make sure she goes into the pew first. However this doesn't prevent her from standing up and waving... We played hymn book swap all the way through because it's easier for her if I find the relevant hymn rather than letting her struggle. She does get a bit cross about it occasionally and then obstinately sings the index, but on the whole it works fine. Fortunately like any regular churchgoer she doesn't need to read the order of service.

As chaplain to the Queen, the Vicar is off to the wedding on Friday. I do hope there will be some gossip when he gets back!

Beautiful Day

Ma would like to go for a drive somewhere. I fancy a trip to the garden centre to satisfy my new bird feeder obsession. So I think that's a win win situation. I need (need mind you) mealworms, suet cakes, nyjer seed feeder, and anything else that takes my fancy.

There's a nice little cafe there so we'll have a bite to eat no doubt.

I would also like to get a couple of small potted plants for Dad's headstone. Suggestions gratefully received. I thought something along the lines of geranium (not pelargonium), anenomes... something fairly robust but also attractive.

#just saying

Please feel free to post comments, opinions, suggestions and cheap alcohol deals.

Writing this stuff without feedback feels both ridiculously indulgent and incredibly lonely.

Pondering

I'm happy to bimble along looking after the cooking/cleaning/medication/daily routine etc. It's not particularly arduous and in and amongst things I'm able to do some writing and recipe stuff. When Ma goes off on one it can be amusing but it can also be slightly alarming, like it was on Wednesday. I really did try but couldn't make sense out of anything she was saying, not even to go along with her and make a 'conversation' - something which the book recommends as a way of keeping things unchallenging and comfortable for the dementia sufferer. So, for example, if she believes she's on holiday in Barbados, you go along with it. Not a chance of that happening on Wednesday. Oh well, I'm sure I'll get used to it.

This morning she was back to messing about with her medication again. There were tablets everywhere and as five of the seven are round and white and identical I couldn't distinguish one from another. All went in the bin and now the tablets are being kept elsewhere. I do understand that this is her attempt to keep control of something but unfortunately she isn't capable of doing this with her medication. I can live with the current insistence on wearing her slippers everywhere rather than shoes but clearly cannot allow her to poison herself.

She asks me all the time if there's anything she can do, so this morning I said 'Yes please! You could put the Dyson round the living room'. Once we'd established that it lives in the cupboard under the stairs not the pantry, we were away. It's a difficult line to walk between helping her to do something and taking over but after five minutes I thought it would be more effective if we plugged the thing in. Then after another couple suggested that she put the 'foot' down instead of pushing it around with the brushes roaring away in mid air. Ultimately it was a short-lived exercise due to aching arms and the admission that she'd never used the machine before because Dad always did it...

Wedding Blues

Phone rings.

M: Yes that will be lovely.

Me: What's that Mum?

M: It's Ladies' Club tonight. Mavis is picking me up at 7.

Me: Right ho, will make sure you've eaten before you go.

M: Oh but I can't go! I'll miss the wedding.

Things I say more than ten times a day (this week)

'They are coming to collect it on Tuesday'  (TV)

'He is a she' (dog)

'No thanks I don't like biscuits/drink coffee'

'It hasn't finished it's just the advert break'

'Don't feed the dog chocolate/custard creams/from your plate'

'It's just a cloud, the sun will be out again in a  minute'

'He isn't my husband' (neither of them!)

Sunday

Today has been both a really lovely day and a really hard one.

Ma has been a bit wobbly, both mentally and physically, which can result in trips or falls or repetitive questioning and being really very arsey about it when she does any of the above. However, we were invited out for lunch and had a really good time. H got to see Z who she meets whenever she's up here and has done since she was quite tiny. Mum thoroughly enjoyed lunch with her favourite friends (and some of my favourite people) who are obviously very forgiving about bizarre turns of conversation, interesting sartorial choices and odd behaviour plus I got time off cooking duties, which is always a pleasant change even though I do love to cook. We are now back and Ma is watching The Cube. I do wish she'd watch BBC though, every ad break completely confuses her, but other than that all is well (even though I've just had to be very firm again with her about feeding the dog fecking chocolate). Grumpy face.

The hard bit is purely mine own. It's been a bad pain day for me so I've struggled a little. I think I need to investigate the world of mattress toppers because I can't keep waking up feeling broken forever. And there's only so much Tramadol and Valium in the world.

Didn't we have a lovely time the day we went to Blackpool

Simon arrived this morning and we persuaded Ma to come out for a drive to Blackpool.

She was very tired after her trip to Devon midweek so was a bit iffy about going anywhere but seemed to emjoy herself even if she couldn't remember Simon's name and referred to him as 'this young man' or 'sir'!

Insisting on going in her purple slippers was a blessing in disguise and gave me the opportunity to talk her into getting replacement white shoes in M&S, indentical to her old ones but they look so much better.

She's going to try a chicken korma for the first time from the take-away tonight. Could be interesting...

Looking for Wishy Washy

Crikey! For someone who hates ironing this is a mammoth task. However, order is being restored. Just call me Widow Twankey. And keep your filthy thoughts to yourselves!

Is it wrong of me to sling out an entire drawerful of old tights? I don't think so, she rarely wears a skirt these days - unless it is over a pair of trousers, naturally, and there's at least 8 new pairs still in packets in the drawer. Plus old tights creep me out and make me shudder. I think there may have been some pop socks in there too :@  :@

I really want to wash her 'big coat'. It says on the label dry clean only but we all know that that can be a bit of a ruse. It's an M&S mac with a padded lining and a 'fur' lined hood. Surely it would be ok on a cool wash? And yes... I'll stop calling you Surely. 

Quiz question of the day: What is a reasonable number of bras to own?

A short break

Mum happily went off to Torbay with Ray and Sandra this morning. It will be a nice break for her, she likes Paignton and will get to see her brother.

Yesterday I helped her to choose which clothes to pack. Rummaging through her wardrobe was something of an eye-opener when I realised that each hanger had at least 7 things stuffed in, on and around each other and the bottom of the wardrobe had more things bundled up and shoved in higgledy piggledy. Virtually everything was stained, dirty or in need of repair and it does explain why she appears to wear the same few things over and over. Without any fuss I just started hanging things properly, sifting and sorting, making washing piles and interestingly she let me do it.

After they'd left this morning I had a look in the chest of drawers. It is clear that there hasn't been much laundry done in a very long while - I'd say at least 12 months if not more. So more sorting, sifting and a fair amount of slinging has been going on. I can honestly say that I've never seen so many clothes! And just how many black sparkly tops does one woman need?? It has occurred to me that Ma probably doesn't even know that charity shops take unwanted clothes and even if she did she is a product of the war and therefore if she's never knowingly thrown away a tablespoon of gravy she would never throw any clothes out. Thrillingly I have three more double wardrobes, another chest of drawers, a couple of hundred pairs of shoes and all the matching handbags still to go...

I hope no one thinks that I am doing this for the wrong reasons. What she chooses to wear with what isn't terribly important in the grand scheme of things but I will do my utmost to ensure that it is clean, not damaged and doesn't make her an easy target for mockery. 

Hopefully by the time Ma gets back I will have dealt with the monster pile of ironing I seem to be creating for myself and everything will be stain-free, fragrant, folded neatly and easy to find. Yeah right.

Goodnight

Want a hand to bed Mum?

No no I'm fine.

....................

Where did my bed go?


Um well it's in your bedroom. Not the pantry.

A stroke of genius

I have to say, bringing Lily, my ten year old Cairn Terrier, has been a bit of a stroke of genius, it gives Ma a focus away from interminable ITV (kill me now).

Of course Lily gets quite a pay off from this too.... endless loafing in front of Jeremy Kyle and Midsomer and sneaky crisps when I'm not looking. Unfortunately Ma keeps forgetting that chocolate is poisonous for dogs so I do have to be quite vigilant. A Cairn isn't very big and whereas Obi could probably absorb a bit of chocolate biscuit, she very definitely can't.
.
                                                                      ~

I am also eternally grateful to my cousin Ray who is collecting Ma on Tuesday and taking her to Paignton for two days to see her brother, my Uncle Ernie, who also has vascular dementia and is in a home. In fact, Ernie, Ma and their older sister Anne all have dementia, as does their cousin Blodwyn.

H and I will enjoy a couple of girlie days of things like not getting dressed, Harry Potter/Love Actually/Pride and Prejudice on DVD, maybe the cinema and Nandos, maybe not. We aren't really girls who shop so no marathons in Primark thank goodness. There is likely to be ice cream, hiccoughy giggling and scurrilous gossip though ;)

Self-helping Self

I have ordered this:

http://www.amazon.co.uk/exec/obidos/ASIN/0091901812/ref=ox_ya_os_product

The reviews are very positive and I think it is something I need to read. I'll let you know what I think.

Gah

Massive sense of humour failure.

Too much nonsense spoken tonight. The false memories get me the most for some reason.

Plus I am feeling guilty for feeling annoyed but Dear Lord it is so bloody hard not to at times.

Thanks Meryl

The appearance of my daughter has kicked off a lot of weeping. Not Harriet's fault I might add - she hasn't been kicking Nanny wearing DMs or anything like that. Just kicked off memories for Ma which are clearly distressing - family holidays etc. Also Ma is confusing her with me as unfortunately for H she is the spit of me at the same age. Poor lass, I hope genetics from the other side will kick in at some point and she has a decent stab at looking normal.

I honestly do not like Meryl Streep as an actress. Yes I know she's supposedly brilliant. I just get annoyed with all the accents already.

And don't get me started on Mama Mia. However... Dad loved it. And once I'd persuaded Ma that she was actually watching it, she is now happily humming and singing along because he loved it.


So thanks Meryl. I owe you one x

Dilemma

I had to travel into Manchester today and collect my daughter from the station. Because I am a bit of a sad geeky type I like to go on the train which turns into a tram. I really didn't think Mum would enjoy it, it is a bit of a haul after all. So I left her at home. To be honest, I'm glad I did, Piccadilly was absolutely heaving - so much so that it even made me a bit panicky. It would've confused and distressed her far too much.

When dad was alive he did work for the CAB right up until his death (accountant) and would do the books etc. up on the landing where his computer is. Ma hated this and would complain like heck because she wanted him to sit with her and watch soaps. Something he loathed. This rambling aside is an attempt to explain her behaviour today.

When I got back this afternoon she was in floods of tears because she'd been on her own all afternoon and no one had come round to see her. Yes it's unreasonable to expect people to do this but on planet Ma this is how things are. I feel it is fair to point out that this isn't just the dementia, this is how she's always been. So I am rather in the doghouse for not arranging alternative entertainment. Then of course the lunch I'd left out for her wasn't eaten because she was sulking. She had a bag of crisps *sigh*

Luckily she does like my cooking and her current passion is for bacon, egg, mushrooms and fried bread. Three times since Wednesday and every time she says 'I do like a bit of bacon and egg and haven't had it in ages' :) So that's tea sorted because H quite fancies it too. I wanted coq au riesling so I'll make that for me and we can eat the leftovers tomorrow.

                                                                             ~

It will come as no surprise to learn that Ma is a staunch Royalist. The trailers now running for the wedding are causing great confusion and I fear by April 29th I may boycot the entire event due to extreme  irritation with every single broadcasting company for starting the build up ridiculously early. It's worse than waiting for the new series of Dr Who! Every day she asks what time it's all going to start.

Answers on a postcard please

In the supermarket.

M: Oh we need some of that stuff. The squares. On a stick.

Anyone who guesses this gets a prize.


* She meant kitchen roll. I'm getting better at working these things out!

Do we need some prawns?

Friday am in Aldi

Have suggested inviting some friends round for afternoon tea so we are in Aldi buying biscuits. Ma is studying the breakfast cereal because that's where the biscuits were last time. 'I don't think we want these darling, the packets are awfully big'.

We select enough biscuits to feed the crew of the Ark Royal and move on.

'There's ham, cheese and prawns in the fridge mum so we're ok for sandwiches.'

'Is there? Oh lovely.'

Walk 6 feet.

'Should we get some prawns?'

'No it's ok we've got some in the fridge.'

'Oh have we?'

I go and get wine and find Ma at the freezer section.

'Ok Ma?'

'I was just thinking we need to get some prawns...'

Routines and Obsessions

We've settled into a routine surprisingly quickly.

I get up, take her a cup of tea and dole out the meds. She asks me why it's five tablets today and I tell her it's always five. She says she's sure it's three. The weather is always discussed, as far as Ma is concerned if it isn't wall to wall blue sky and sunshine it's a wasted day. I'm then asked if I've put the immersion heater on so that she can have a shower. I offer to turn the shower on and she refuses. Then comes to tell me it isn't working. I sort the shower. Then check to see that she's actually in it because I know that sometimes she forgets and just gets dressed instead. While she's in the shower I do a quick search and retrieve mission for any laundry which she has currently taken to stashing either under the bed or behind the radiator. Sometimes what she chooses to wear can be interesting. Despite three double wardrobes full of clothes she has taken to wearing the same six or seven things - sometimes all at the same time. I try to gently nudge her but she hates that so sometimes I lose the battle, the other day it was trousers and skirt and long jacket with a sparkly top.

Every morning we disagree about breakfast. I offer, she refuses. I make some anyway and she eats it. Then the TV goes on and stays on until she goes to bed. I'm getting quite au fait with daytime television but have to leave the room during Jeremy Kyle...

For my entire life my mother has been on a diet (let's not go into my own food and weight issues but hmmm...) so lunch and tea bring more skirmishes but I'm learning not to ask her what she wants and just put something in front of her. She retaliates by only ever eating half of anything I give her. However I am wise to this and somewhat sneaky so make sure she gets calorie/nutrient-rich food. No Lite shite in this house any longer.

Trips to the supermarket can be tiresome with Ma wandering off so I try and do as much of that on my own as I can. Although I find it vaguely disturbing/hysterical that we get tears in Aldi because Dad 'loved' going there. From memory he hated shopping but would do absolutely whatever he could to make Ma happy.

As I type this she has gone next door to 'tell them I'm here'. Pointing out that lights on/curtains open and closed/my car in the drive might give them a clue is a waste of time. She has become obsessed with next door and they, dear people that they are, ask her in and ply her with coffee.

Time for a cuppa methinks. And then type up some more recipes.

A hug and a question

A goodnight hug. Then... 'How many people are staying here tonight?'

'Just you and me Ma'

'Oh that's ok then, I thought we had lots of people staying'

Guilt

I am doing this because I can't bear the thought of someone else looking after my mother. I remember when my grandmother was in hospital on a geriatric ward many years ago. One of the other ladies there was an ex-headmistress who was clearly in late stage dementia. I got quite upset by the way the staff spoke to her - they weren't rude or brusque and certainly weren't unkind. It just upset me that they called her Annie. Not Miss Rose. Just Annie. I know it didn't matter to her but it felt so disrespectful to me. I would hate that to happen to Ma.

However. There's always a however isn't there?

I am adopted and my relationship with my mother has always been fraught with a range of volatile emotions. Dislike, annoyance, distress. She can be extremely cruel and unkind even without the added boost of dementia. She always says that she loves me but her actions and words have often said a different thing.

But she is my mother. And that means that I will look after her to the best of my ability.

She's just told me she's never had broccoli before... My children will find that interesting. They often mention the greige coloured cauli and broccoli which was ladelled from the hostess trolley on Christmas Day. We all suspected that it had been sprinkled liberally with fart powder for added oomph.

Birthday Card

Today's challenge was organising a birthday card for my brother. Mum had remembered that he has a birthday soon which is good, but when I came back with a card saying 'Happy Birthday Son' she looked at it for ages and read the verse before finally asking me what it was for. After I told her she got a pencil and started writing on the front of the card... when I suggested inside might be more appropriate she said that she'd never written one before! She did write something but it is evident that she cannot spell or even form proper words or letters any longer. It was quite shocking to see actually. But does explain why Dad continued to write cards, lists etc. even when he was 95% blind - and that very fact quite possibly contributed to this too.

One huge result for me today. I bought her a fleece-type jacket this morning which she has worn all day and has meant that the heating has been at a sensible level rather than at meltdown. Such a relief!

07 April 2011

My beloved Pa died on the 19th December, 2010. Very quickly after his death we realised that Ma's 'forgetfulness' was something considerably more and that Pa had been shouldering this burden for some time. In fairness to him he had asked the GP for a referral to a dementia specialist but sadly this and her diagnosis didn't happen until after his death.

For short periods of time mum comes across as perfectly ok but inevitably something will be said or done which shows quite clearly that all is not well. One symptom of dementia is the gradual increase in inappropriate comments and behaviour, sometimes it is amusing (diso dancing to the musak in Debenhams) but more often it causes a sharp intake of breath (casual racism is currently a favourite). Other symptoms include memory loss, aggression, false memory, confusion and loss of faculties.

At the present time I have taken up the role of mum's main carer and I've created this blog because sometimes you need somewhere to put your thoughts and feelings. I hope that other carers will feel able to come in here to find support and share experiences.