Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Saturday, 28 August 2010

Retail therapy, time for sprawling, and Fluffy isn't very well......

A little break of sorts...

Mum has a had a few good days QUICK! TOUCH WOOD! and in fact, on Thursday, I didn't see her till 5.30pm. We had a couple of phone calls, no more. She wasn't all panicky like she has been. They had an 'afternoon tea' in the lounge at the sheltered housing complex, so she had somewhere to go in the afternoon. She said only 4 of them turned up but they had a chat, a giggle or three, tea and biscuits...

Of course, not knowing IF the phone will ring meant I couldn't go off out and forget all. But it WAS a nice break, an afternoon footering about. I can't even remember what I did with the time(!); laundry, I think, and making a fuss of the cats, watching tv and sprawling :)


Thank you all again for your support and concern, and also for all the people who are helping in their own way, like sending good vibes, prayers, good thoughts...

Retail Therapy!

This photo is pure retail therapy.... "Animal" have a shop in Colchester and had a sale this month. This bag was half price, at £8. I loved it, so.... ahem. And the book is one from my wish list on Amazon. I use the wish list facility to save me money -LOL- as it means I can go window shopping there and plonk things onto the list rather than into the shopping basket :)

I didn't like the book quite as much as I had anticipated, as it didn't have as many different styles featured in it as the 1,000 quantity had promised. LOTS of a certain "avant garde" style, least that is what I call it- you know, VERY grungey collage with photographic heads poised on weird stuff and scruffy paint effects. I'm not saying it isn't artistic, I'm just bored of it.

I have lent the book to my Art Therapist, as some of the pages are so weird I felt it would be an Art Therapist's dream to wallow in a few hundred of them for a while. LOL!

Any advice for Fluffy???

Fluffy had a sniffly nose a month ago. Well, half a nose, as it is just her right nostril. Her right eye was watery too. The vet gave her a week of anitbiotics, and it cleared up in just a few days.
However, it came back :(

Last Monday we took her back to the vet and she gave her another 2 weeks' worth of the same. Half way through the course almost, and it isn't working. She is getting snotty. I didn't even know cats GOT snotty. I CERTAINLY didn't know cats got bogeys. I have been acting nursey-mummy and coming to her rescue with a tissue or warm, damp face cloth. She is starting to sleep under the bed, right in the middle, nose firmly out of reach.

Any advice? If you are a cat owner, have you come across this?
The vet said that if it doesn't clear up it could be something like a grass seed lodged up there somewhere, or at worst, a growth of some kind :( .........either way, at 17, I don't think I would like her sedated for an Xray..... gulp! I just hope hope hope that it clears up..... waaah!

Tuesday, 24 August 2010

Daydreams of escape

After several good days, today was a bad day. Yeah, I know, I should document more of the good ones, shouldn't I? I know, I know, I plan to. I'll try to. I promise.

This evening I nipped out to the corner shop. Well, more of a round the corner and up- shop. A ten minute walk if you stroll. A three minute walk if you run.

Standing in the queue, I knew I didn't want to go back home.
I wanted to go for a good, long walk in the darkening, breezy evening.
I thought back to last summer when Luvbug and I had got on our bikes one evening and just pedalled and pedalled, out along countryroads and round secret lanes behind the housing estates, across farm land and over fields. I remembered the cooling air, the sweat, the freedom. I wanted some of that again.

I looked down at mum's yoghurt, my not-quite-butter spread, and the two trays of cat stinky goodness, the stuff they only get when the online pet shop are late delivering the proper stuff again. I knew I couldn't stray. I had to go back, and straight back. Mum will already be looking out of the window and asking Luvbug where I am, will I be ok, and couldn't he come and pick me up.

Before I knew it, I was head of the queue, counting out the right change. (If you do little things like that, they never realise that you're on auto-pilot, or near to breaking point, I mean, who would care about the right change if they're all up-side-down inside?)

Friday, 20 August 2010

Sometimes it's the little things...

I was going to mow the front lawn yesterday. It's usually not a long job, as the grass is quite thin. Well, you know. Not dense with lots of weeds and moss (like out back!)
But I was held up again and again - BY LADYBIRDS!!!!!
I'm happy to report that these are the genuine, British, 7-spot ladybirds, none of the dreadful harlequin breed that's coming over from the continent and threatening our lot! No, no no. You'll be pleased to hear the 7-spots are alive and well and currently holding a rave on my front lawn, flower beds, shrubs,weeds, in fact any where I looked to do some trimming or pruning.
In the end I mowed a wee bit in the middle, but kept stopping to move them onto flowers in 5s and 6s.... they made me smile. They are very welcome here :) I lefty most of everything alone. Deadheaded some flowers, watered some casualites. Then left quietly. Don't want to disturb them.It was great fun, like walking in on someone else's play time.

Sometimes it's the little things that save you!

Monday, 16 August 2010

No progress, but at least my head has stopped spinning...

I'm now a little clearer about things.....

With thanks to your emails, messages of support, & a trawl through the NHS website. Here's the situation:

There are drugs that can help Altzeimer's, but not Vascular Dementia. Mum does not have Altzeimer's. Least, no one has mentioned it. Some doctors do prescribe the drugs for Vasc. Dem. but if they do, it's against NICE guidelines. This is why, if we went private with a clinical psychologist, we wouldn't get NHS help with the cost of any drugs that were prescribed.

BUT, it is very unusual for mum to get Vasc. Dem. at 68. This is usually far too young to get it with no other underlying conditions. It is possible to have Vasc. Dem and Altzeimer's together. So maybe this is a possibility?

As to the efficacy of the drugs I have received conflicting reports, at the one end of the scale saying that they work only for 6 - 8 months (which is also what the neurologist said, actually) to other reports from people who have relatives who've been on them for years, in one case, 8 years.

For our next step, I think I need to write to the neurologist for clarification of the diagnosis, and to stress that if she thinks the drugs could be of use then we really need to get them as soon as possible. Maybe her caseload is so great she cannot keep tabs on what's happening on individual cases, and maybe she doesn't realise that there is a 10 month waiting list for this next step that she's sent mum on? I'll cc. the GP too, and if I don't hear back in 15 days, I'll write to our MP.


OK not an interesting or uplifting blog post. Sorry. But thanks all, for helping me sort my head out. If I can just get some of it down as a to-do-list, it helps me cope. It stops me feeling so absolutely helpless.

Mum had a low day today. It's harder when she is down. I just want to make her smile.....

Thursday, 12 August 2010


Last month they added mum to a waiting list for a clinical psycologist, but wouldn't give an estimate for how long the list was. Well we've managed to find out- 10 months.

10 MONTHS!!!!!

The clinical psycologist's dept. hasn't been in touch in all, oh no(!); we found out via the legal dept. at the hosptial. My brother is a solicitor, and knows someone there. Otherwise we'd still be waiting.

We've already enquired whether they would see someone privately -they won't- ok so at least we know people aren't pushing in- but so now we're not sure WHAT to do. Grab a Yellow Pages and look one up??????

Mum needs to get those pills PDQ, but can't without a clinical psycologist's say so. The neurologist wouldn't give them. In fact, we are meant to see the p.doc, THEN go BACK to the neurologist to get them, which will be after another 6 week wait on top, as appointments always are. At this rate it could be NEXT JULY before mum even STARTS on these drugs- and everything we've heard of them says that they do nothing for memory and cognition that's already lost, but they can stop more being lost. What the hell will be left by then???

I am trying to run fast and the whole system is ground to a halt! What do I do????????

I am going to write to the neurologist... or should I? Chase the GP? What would she be able to do? Oh I have been with mum all day, trying to keep smiling and up up up, but all the time I've been spitting feathers on the inside.......

....those of you who've been telling me of their own experiences, any ideas????

Saturday, 7 August 2010

Ghost stories and shadows

I am nervous about typing this in case it tempts fate, but mum has had a few good days.

Even on good days, there will be moments when I am reminded that all is not well. Just as I am relaxed around her, something will happen or be said that makes me sit up.

Today, she talked about my aunt, who had had a flat next to hers in the 1960's. It was part of an old terrace townhouse, Victorian, or earlier. They both tell a tale of how it was haunted, how they would hear footsteps in the empty flat above, and how, after they had scattered flour over the floor up there, they went back and found two sets of footprints leading out of a cupboard and into the opposite wall. Side by side, an adult's and a child's.

"Oh yes, " I said, joining in the telling, "and now it's a hotel, isn't it? I know it. Near Star Hill. In Rochester. That's right." She has told me this bit herself many times, but today she remarks,
"Is it? A hotel? Well I never!"
We sipped our tea, sitting outside a little cafe, people watching.
Then she asked -and this was the moment-
"But.... if it's a hotel now, where does Pat live?"
Neither of them have lived there since the early 1960s, but in that moment, mum lost 50 years.

I've been given a name for it now, this thing. It's vascular dementia. I've found an online forum full of people going through it either themselves, or caring for someone who is. I haven't browsed it very much, it's too upsetting for now as everyone seems to be in advanced stages. It's like looking into our future and it's so scary. She will go downhill in large steps, in sudden deteriorations. I lie awake worrying and crying about when? and how much deterioration comes next? and how long do we have? how long before she's just a ghost of my mum?

I posted a question about whether I should tell her what it is. The "D" word.
As I had suspected, they advised not to, not if it would cause more upset.
So for mum it is "memory problems", a side effect of the TIA and the resulting epilepsy.
After all, the time I saw her crying over this was the time she asked me, "I'm not losing my mind, am I? I'm not, am I?"

No mum, don't worry. You'll be fine. You'll be fine. I'm determined that she'll think she's fine.

Wednesday, 4 August 2010

Pusscats, thunder and cardboard boxes

It's finally thundering today. At last! After months of hot weather and mugginess. We've had showers lately but scarely enough to water the garden; just enough to make it humid. Then today I'm wandering about with my glasses on and taking co-codamol for the pain-behind-the-eyes classic weather-headache. And BOOOM! Big thunder roll, right over us, and the heavens open. HOORAY!!!!

Not so horray for Scooter. So much rain has released the frogs; Lord knows where they live normally, but heavy rain produces them all over our garden. Scooter likes to try to catch them (never succeeds, don't worry!) so has been sitting at the open patio doors, watching them bounce across the lawn in the downpour. He has never seen so many, never seen any in daylight, and never seen them so active. Twice he has tried to pursue them, only to retreat at half way across the grass, too soaked. I've been waiting for him at the door with his towel, and as he snuggles in he does that chortle that all cat-owners know to interpret as "Please don't tell anyone else about this, mum."

Aw, never mind. I'm sure the old-bone-warming summer will be back soon for another month, Scoot. Meanwhile, here's a pic of him from the other day. I'd taken in the cushions from the outdoor chairs, so he lay waiting on the table till I took the hint to bring them back:
meanwhile, a grocery box has become Fluffy's new favourite sleepy place:What is it about cats and cardboard boxes?? Do dogs go mad for them too????

Ahhh pusscats are such good therapy :)

Tuesday, 3 August 2010

The cost of going out

Luvbug and I had a meal in London Friday night; his parents had stopped over en route from Ireland to Switzerland for a holiday.

We left mum around 5.30. I 'phoned her at 7.45. I tried to call again at 9, during our meal, but no answer. A few more tries, no answer. When we drove home we came via Mum's, to check she was ok.

I found her in bed, with two duvets wrapped round her. Remembering that a high temperature can bring on a fever, I gently pulled one away. She woke up. She was still half dressed under there. She was talking about birdies, or baddies, I couldn't quite make it out.

I'm not going into details more than that, but there was evidence in her home of confusion, including with her pills, despite the special container for them, which is divided into days and times of day. She couldn't remember if she had gone to bed early, or what she had done in the evening, but said that she had lost track of the time and the day. We stayed for a while to check she was going to be ok, but of course we couldn't really know. We just had to hope for the best, when we left her settled down again, and sneaked out at nearly 1am.

We had a disturbed, worried night, then I headed to her place in the morning, where she was tired and vague all day. I bought a thermometer recently so I can check her temperature if ever she is out of sorts, and this was ok.

She's continued to improve as the week has gone on, but we are left reeling, half stunned, that our first evening to ourselves since October caused, or at least resulted in, confusion and panic and upset on her part. It has left us with heavy hearts, I can't deny it.

Sunday, 1 August 2010

Familiar but strange...

The depression is strange. It seems to know that I just don't have room for it right now. It sits curled up, deep down, and only reaches to the outside rarely, mostly in bursts of tears that last hours, before all returns to normal. I'm grateful, as it means mum doesn't get to see me at my worst, or anything like it.

She isn't daft. She can tell when I'm tired or when something is irritating me, when I feel annoyed about something. But I haven't been depressed around her. I'm glad it keeps to its own compartment for now.

Looking at previous patterns, I know that there is only a matter of time before the lid of the compartment blows and the beast escapes.

What I don't know is how long I have left before that happens. So I have to contact outside help this week.

I've been advised to start with Age UK*, as apparently they can advise on help with care, meals-on-wheels, etc. I also need to get a back up plan in place in case I just can't organise things like her medication and going out. A regular break would help so much. One day, or one afternoon, even, a week, or fortnightly; time on my own or with Luvbug, but time when I can relax and not think that she is worrying where I am or getting confused and scared, which is what happens if I keep my appointment with Art Therapy every Tuesday. I've had to skip it twice recently, as I just couldn't get away.

As ever, thank you all so much for your supportive comments and emails. I'm sorry I don't reply to them individually.

*age UK is the name of the newly combined charities Age Concern and Help The Aged.