Skip to main content

This Dementia Business...


"There's something radically wrong...Is it this dementia business?"
 Bebe asks several times every day.

It's a year ago since Bebe moved in with us & although she now tells everyone that we forced her against her will; she chose to come - ok, we had tried to persuade her for years, but it wasn't until she was removed from her home & placed in a psychiatric unit, that she finally accepted that she could no longer cope on her own. We were asked to look into moving her into a care home, but instead - suggested she at last made the move to Cornwall.

For the most part it has been fine, but the occasional blips have increased over the last couple of months & her mood swings have become more extreme. We have had memory service involvement for a few months & the community psychiatric nurse's input has been invaluable. Bebe, as do most people with dementia - thrives on routine, so she has been struggling lately to adjust from attending day care 5 days a week to being home at weekends. The nurse suggested we get a weekend routine in place that would suit us all & to purchase whiteboards so daily information can be displayed. 

We decided that eating out wasn't a good idea (even though Bebe always talks about doing it), she only eats well at breakfast - usually 2 bowls of porridge & 2 slices of toast. The rest of the day, she picks at her meals & has a tendency to spit food out (a common dementia trait) - it's pretty gross, but it's what she does... So Saturdays, we venture out either for a walk if the weather's good or to do Bebe's shopping - she likes to buy a magazine & some biscuits. Sundays, we have a day at home - we do Bebe's laundry & she likes to sort it all out & fold it up. She spends most of her time at home emptying her wardrobe, folding her clothes & putting them all in piles. She is agitated while doing it, but feels compelled to do it & we leave her to get on with it.

Bebe's clothes sorting continues through the night - she hardly sleeps, nor does she nap during the day... Incredible! 
Although she hates her 'open' wardrobe, we are very happy we didn't replace it with one of her heavy doored ones... As we had to remove her two sets of drawers due to the constant banging of the drawers being opened & closed, so now the only piece of furniture she can move is a chair, which she uses to barricade her shower room door. She uses the main bathroom during the night & puts coat hangers under her pillow, just in case someone breaks in...

We've tried hard to find hobbies for her & have now given up - her life before dementia was just about alcohol (lots of it) & TV, so to get her interested in anything else is impossible. We did bring her CDs & put them on every evening or put on a playlist we've made with her favourite music - sometimes it moves her to tears, makes her sing & dance, but sometimes she doesn't respond at all. All she wants is to be happy, but just can't find it...

The problem we are faced with right now is: Should she be in a care home full time? If so, where? Is it the place she knows best? It's near us, but what if she lives for several years & we leave the area? Would she really be better living in Stoke? With people she has things in common with & a shared history. It's just so difficult, although the thought of going into care is terrifying for Bebe at times - would she really be happier? She would have routine, people the same age, constant warmth & hopefully staff who won't snap occasionally when things get tough...  

Any suggestions?

Kay & Sime
xx

Comments

Popular posts from this blog

Nettles

Our garden yesterday. Tall Nettles TALL nettles cover up, as they have done These many springs, the rusty harrow, the plough Long worn out, and the roller made of stone: Only the elm butt tops the nettles now. This corner of the farmyard I like most: As well as any bloom upon a flower I like the dust on the nettles, never lost Except to prove the sweetness of a shower. ~ Edward Thomas ~ Every time we venture out to pick nettles, Sime always goes on about this poem! Anyway, thought I'd share with you the article I've written for next month's Parish Magazine... Our hedgerows are coming alive with food aplenty, but hardly anyone really notices the nettles that surround us, they grow quietly while using their juices to produce a medicine that can bring health. Anaemia, arthritis, rickets, tuberculosis, respiratory diseases, colds, catarrh & lymphatic problems can all benefit from this wonderful wild & free super food. Nettles are ric

Diet And Drugs

Some of you know about my fight with Graves Disease, an auto immune system disorder, which causes an overactive thyroid. Since I was diagnosed 7 years ago, I have made it my business to know everything I possibly could about the condition & this has probably saved my life. I have blood tests on a regular basis & in November last year, I was told that my T4 levels are normal & again in January the same.  My thyroid stimulating hormone was finally starting to work too, after 7 years of lying dormant, so I suggested I came off the anti thyroid drug & my GP's response was to continue for a while longer. A month ago, I rang my GP & suggested again that I come off the drug or at least halve it, as I was feeling so well  & was concerned about the drug pushing me into being under active. Again, she said to be patient & they would send for me when it's time for a blood test. I don't normally do as I'm told, but decided to stick with it a b

Taking The Plunge

Life is set to change again for us. We have had a great time entertaining many B&B guests, but now have decided to stop & concentrate on the things that are far more important. Firstly, ourselves... Sharing our home with many strangers is quite exhausting & Sime in particular has worn himself out giving his all, something neither of us had really noticed until we stopped. Secondly, Bebe (Sime's mum) is going to be moving in with us... Her dementia is progressing, though the conditions she was continuing to live in were obviously not helping. We feel she has been let down by the social care support team, her carers seemed to be excellent on the surface, but in reality - she has been badly neglected. On our last visit, we found her flat in a terrible state. The cleaner had disappeared, her hairdresser had stopped going in & some of the carers didn't even bother to feed her! On top of all this, she has been phoning the police about her hot water &am