11 months later

..

So much work, so much heartache but rewards too.

Mum is happy .. more happy and more secure than she has been for many years. She is warm, cosy, well fed, and no longer distressed. Her memory has stabilised and honestly, she's so much better.

I've had a wonderful year ... I've been to festivals, I've been camping, I've had time with my daughter, my son, and the kids. DH has stabilised, his granddaughter is charming and things are ticking over.

Of course the mean sister is still out there - her latest complaint revolves around the amount of money spent at Christmas ... she is jealous of the fact that other "families" get more. Mum has always gifted the person ... not the family. Who the hell says "this family has 1 child so each gets £60" "this family has 3 children so each gets £20" .. she is a mean hard woman. No happier for having

(a) got a wonderful husband

(b) got enough money

(c) is healthy ...

Her perception is, and always has been, coloured by what others may have that is more than she has.

I do feel for St Peter if she should die before her full 70 years are up .. his afterlife won't be worth living.

Anyway, she will moan and make discord, and it, in turn, will make others unhappy ... but it is almost Christmas, my mother is content ... and so (for now) am I.

Visit from the angry sister

Here in pleasant valley life has been sort of moving in the right direction.

Hubby's meds are strengthening his heart.

Our little granddaughter is flourishing and is now 14 months. Her mum seems more in control of herself.

But

Mum's decline was increasing at speed. She wandered and had to be brought back. She forgot how to turn a key and got stuck between her porch and the front door, in freezing temperatures, and was only rescued because the neighbour was putting his rubbish out. She set fire to things on the hob, and dismantled her smoke alarms. She became increasingly incontinent. Her heating froze during the bad weather and she didn't realise, so she became hypothermic. She let "charity" collectors in at 7pm at night and gave them the contents of her purse ...

After being declared by the Consultant Psychiatrist for Later Life Mental Health as lacking capacity, I had to place her fast. She would be placed "for her safety" in a dementia or EMI unit the next time there was a crisis.

The issue was, she was being turned down by mixed units -the minute dementia was mentioned they wanted her in a dementia unit. Mum, despite her memory issues, is bright, intelligent, funny and feisty. She just cant remember a few minutes previously and she can't recognise danger.

So I battled hard and got her accepted into an award winning sheltered housing complex. She moved on Monday 31st January and has thrived. She loves it. She loves the company (she was on her own all evening most evenings), she loves having friends (carers) pop in on her to check on her. She loves having her own flat, with her own accommodation, and her own things and she is truly happy.

But, this is my life, so things are never straight forward.

The sister who lives in Australia, who never came to visit for over 5 years, who didn't come when mum was mugged, nor when mum broke her hip, suddenly decided that I had pressured Mum into a "home"

Exning Court ( http://www.housingcare.org/downloads/facilities/generated-brochures/116671-exning-court-exning-england.pdf ) is bright, airy, spacious, caring, loving and independence supporting. The staff are amazing, the grounds are stunning and Mum's flat is beautiful.

But, despite giving all the links, all the information I could, on Weds I got my sister's first email:

Hi all,

I am flying back to the UK to see mum next week. As long as all is well with her, I will only be in England for about a week. I would be obliged if you would all allow me to spend as much time with her as possible and rearrange anything you may have planned for the week of 14 - 20 February with her. Mum tells me she has an appointment with the doctor on Wednesday 16. I understand how difficult it is to rearrange those appointments so perhaps that one is best kept. I have spoken to Jacqueline separately about her weekend of 19/20 February.

Thank you all for your cooperation.

Now, this email wasn't even directly addressed to me. I was copied in. Somewhat hurt I still replied with a bright hopeful email

Hi Karen

I spent about five hours with Mum today and she was very excited that you would be flying over from “ooorstrayleearrr” to see her. She asked if I could get a small bed put in her room, so I suggested that you might want to use the guest suite along the hall (it’s only £5 per night).

She does have a couple of regular events that she wants to continue to do, but certainly you would be able do them with her. On Tuesdays she has her hair done in the hairdressing salon on site, and she would like to do that still if you are ok with it. I have asked the staff there and they would fit in an appointment to work around you if that is agreeable to you. On Fridays she has a day trip out to Newmarket Day Centre; the bus comes to pick her up and drops her back. She has another circle of friends there (including a Joan who comes from London and was born in 1928) She was keen to go to that again, and certainly the Day Centre would welcome you (lol, although it is for over 50’s I’m sure the average age is nearer 70!) if you wanted to go along.

As she said to you, she has a full health screening on the afternoon of Weds 16^th, and that would be difficult to rearrange; particularly as I need to get her repeat medications set up. Wednesday mornings typically I go and give the flat a thorough clean, but certainly can either leave that to you or do it when you have gone back.

Obviously I have to book her meals and carers, so for now I shall wait to hear from you as to how you want me to play that. At the moment she has a full cooked lunch Mon-Thurs and a tea “picnic party” in the evenings. Friday she goes to NDC, where she has her lunch and the weekends there are no meal arrangements as typically she will have visits\outings with the family.

Please do let me know how I can help, and whether you want me to book the guest suite (or get a small bed!!) so that you can maximise the time you can spend with her. Obviously it would have been lovely to have spent some time with you, but I truly understand your first priority must be spending time with Mum.

Travel safely

Chris x

Bit too desperate, perhaps, but I still don't understand why she was so angry. But .. this was the response

Hi Chris,

Nice of you to try and organise the details of my visit to mum, but I've got it covered. Thanks.

I'm delighted that mum is still as excited about my trip as she was when we spoke about it on Sunday evening. I suppose that's the nice thing about being forgetful, you get to experience all the good news over again. I should have had her write my sleeping arrangements in her calendar along with the dates of my visit so she won't be upset at me turning down the bed in her room again when I speak to her on Thursday again. She had already suggested both the bed in her room and the suite, and I'd turned down both.

I think for arrangements about what we will do during the week (apart from her medical visit), it will be best if mum and I work out what she wants to do when I arrive. She obviously isn't into a routine yet since she has been there less than two weeks and her previous routine was interrupted when she went into the care home. Let mum and I play it by ear, ok? If you email me the details of the Friday visit to NDC, then if mum tells me she wants to go next week I'll call and make whatever arrangements are needed. If mum wants her hair done then perhaps it can be their first appointment on Tuesday morning?

Since you are operating with mum's Power of Attorney, I know you are concerned about what money of mummy's to spend. However, as I don't really know what we will do until I have seen mum's state of health and mind I suggest that carer arrangements should stay as they are. I'll notify the home if there are any changes. Perhaps you could ask them to be flexible about meal arrangements? I am sure that they can manage to rustle up a meal if she requires it or throw one away if she doesn't.

What time is the medical appointment on Wednesday?

I'm not looking forward to the UK in February. I'm going to be brave in a minute and look at the temperatures.

Cheers
Karen

So, here I am, trying to ensure Mum is going to be ok for the next week, whilst I try to avoid my sister, who is angry at me ... and honestly guys I'm not sure why I feel guilty - I've been here, caring for my Mum, loving my Mum and supporting my Mum, all the while my sister has been enjoying her freedom in Australia. My Power of Attorney was first and foremost one for Health and Welfare. The Finance one came later, and Mum now is much better off since I have helped her out. The money comment is just plain mean and nasty: I've paid for most of Mum's care, hospital visits, food and clothing for the past 2 years.

Just send soothing thoughts to me, because I could cope with some virtual calming, for my Mum's benefit.

Hugs and hope life better with you

Train wreck

When I was a kid and I went to the pictures (ok, movies or the cinema to those from a different culture or era) you knew something bad was gonna happen when the train was just chugging along smoothly ... before the bridge; before a crash, before a person strapped to the rails!

My life has been that serene train, before the huge issues: I've been chugging along, breezing over the weeds, avoiding leaves on the line, not killing\maiming\injuring the local wildlife - just chug, chug, chugging.

This last 18 months has been the finale, the wreck, the crash, the bridge explosion, the carriage upon carriage upon carriage concertina of destruction!

If I repeat the litany of events, it will seem Hollywood train crash - but here it goes, chug chug:

Madmother's decline; DH's daughter's alcoholism; Madmother's hip breaking accident; DH's daughter's pregnancy; chug chug; Madmother's increasing Alzheimers; DH's DD's attendance at intervention and AA meetings from her third trimester; Mum's slide into day care; DH's granddaughter born - Georgia (who seems AS free); DH's increasing indigestion problems, which weren't, metamorphosizing into Atrial Fibrillation, Mitral Valve prolapse and weak heart muscle issues; Madmother's increasing faecal incontinence (which she pretends doesn't exist); chug chug; brother-in-law's death from a heart attack at 61; his partner's stroke at the funeral; his partner's brother's death just 10 days later from an epileptic seizure; chug chug; DH's DD's partner has been identified as the father of a child by DNA testing, DH's DD and partner pay the CSA maintenance but ignore the paternity and the child, who apparently is "accident prone" and a regular visitor to the local A&E; chug chug; DH's meds give him dreadfully low blood pressure, affecting all manner of things from fatigue, to dizziness to more personal, body functional issues; chug chug; I have been diagnosed with late onset asthma and a stress related blood pressure issue; I have too much on plate after coping with housework, gardening and Madmother to go to knit night; chug chug; my DS is worried about how I will cope with his gorgeous beautiful twin daughters, he's hesitant about me having the girls to stay this summer ... bridge down, carriage after carriage collapse with me into the ravine ...

Dearest darling daughter is there to pour the water between my lips, to whisper words of encouragement, but I fear I am tied to the tracks and the next trainload of problems is just around the bend, chug chug, chug chug, chug chug

Rictus - fixed grin, or grimace!

If Schadenfreude is your idea of a good time ... step right up .. this blog is for you.

In the past couple of weeks my favourite aunt of all time ever died ... I owed her a phone call; she was my link to my father\her brother who died through his own choice nearly 26 years ago. I feel I've now lost two and I don't have Jacqueline to talk to.

My mother struggles through the fog that is Alzheimers; she has good days, and bad. She sometimes is incontinent and rarely tells the truth.

My 61 year old brother-in-law has suffered a massive coronary on Monday just gone - his prognosis is appalling. His son is travelling and, as yet un-locatable. We hope he will be found before the expected unhappy ending.

Chris, the husband, is on a million medications and appeared to be doing better, but today his blood pressure has fallen too low, so may have to come off the medication meant to repair his heart damage. His dangerously irregular heart rhythm cannot be put right unless his heart walls and prolapsed valve can be strengthened. They will not be strengthened without the medication.

DH's DD has been drinking again.

I have been diagnosed with late onset, stress activated asthma - whoop!

However, my garden looks gorgeous - I love late Spring in the UK; my knitting keeps me sane, and my twins, always, are a delight. My daughter is without equal and I would hold her up as a balance to just about all the worlds ills, so blessings I will count, sunshine and flowers I shall enjoy, and love I am sending out to you ... just pass the happiness on and stow the crap. What doesn't kill us makes us stronger - allegedly :)

xxx

Nearing the end of a decade

Well, from close of play tonight I'm just 365 days away from the turn of a decade. Decade turns have always horrified me ... no longer in your teens, no longer in your twenties, then the crap starts ... no longer in your thirties ... how do you cope? (OK I know it goes on some from the count up, but I was depressed enough there!)

I thought I would say what has happened in this past week, in this past month, in this past year, and whilst I'd love to tell you of the rest of this past decade we would then be here some time!

This week, DH was released (on probation, you might say) from hospital. He didn't have severe indigestion, or IBS or excess acid, he had atrial fibrillation (a wickedly erratic heartbeat which caused the mad dash to A&E not long after my last post), caused by heart congestion, a prolapsed mitral valve and pressure on the chamber of the heart that has caused the muscle to weaken and distort. Right now he is on warfarin, to thin the blood, ACE inhibitors to help the muscle consolidate and stop it weakening further, beta blockers and digitalis to try to slow the heart rate, thiamin and strong vitamin b compound tablets to help his liver, and finally a simple ant-acid dose of Gaviscon to soothe any indigestion. When his blood is thin enough (we are attending the Warfarin clinic 3 times a week for blood work testing) he will have an angiogram to analyse the state of his arteries - some plaque is suspected - and perhaps have cardioversion - electric shock treatment to the heart - to reinstate sinus (normal) rhythm to his heart. He may need angioplasty if the arteries are clogged, he may need valve replacement, the next few weeks will tell.

So the past month has seen me as nurse, medicator, chauffeur and confidante. (Won't bother to list the details of all the other roles that get offset to women - you know anyway).

MadMother has been distressed because she knows DH is ill, but I'm shielding her from the details - she will worry with or without full disclosure, less I hope for knowing less. In this past year she has broken her hip and had her alzheimers diagnosed. I have enrolled her at 3 day care sessions, and she has found new friends, to replace those who have died or moved away into more sheltered housing, and new interests. She has forgotten old skills, and has forgotten to be safety conscious. I have been to rescue her from our local hospital so often the nurses recognise me. Still, she is no longer depressed or lonely and her mental deterioration has slowed enormously.

The past year has seen my knitting stash grow like a well cultivated crop, well that's apt then, it is a well cultivated crop. I've learned new cast ons, and I've increased my ability at ultra fine lace knitting, whilst churning out socks like I have to clad the world. For the second year running I made all my friends and family a hand knitted Christmas gift. I've joined sock clubs, a lace club and a blanket club. I've joined a new knitting group and made new friends. I've met up with old friends and gone to Harrogate for knitting meet ups, I've put friends on hold whilst my life spins and I try to control the skidding. I read other people's blogs as a life saver - to take me away from my anxiety, and I'm relying on snail mail post from a friend whom I struggle to answer.

DH's daughter has been diagnosed as an alcoholic and she has successfully been off the booze for 5 months now. Her 3 month old daughter seems ok, putting on weight and thriving; time will tell if she has dodged the foetal alcohol syndrome bullet, but my fingers are crossed and holding.

My own DS's twins are divine, I went on holiday with them in August, and they were a joy. As my problems have increased I have seen them less, but oh my god how I miss them.

On Mother's Day this year, DH was in hospital in the cardiac unit, I was exhausted and tearful at the drain and pain of the previous months, when my gorgeous, wonderful daughter turned up at early o'clock. She had driven for an hour and a quarter to get to my house in time to make me a mother's day morning cup of tea; she had brought breakfast- eggs and croissants; she had brought gorgeous little knitting gifts. But the best gift of all, apart from the whole thought and deed, was home-made chicken soup. She had stayed up til almost midnight the night before making me soup, so that I would have something nourishing and comforting when I got home from the hospital after late evening visiting. I know how lucky I am and it makes me tearful. Really, seriously, distressingly happy but tearful.

This time last year I had a lump in my breast, ultrasound and a biopsy - the lump is benign. This time last year I was packing to jump on a plane and fly around the world to see a dear sister get married to a wonderful man. I spent hours on a plane and days making a house fit for a wedding, and I am pleased I was there for her. This time last year I was thinking life would slow down - HUH!

Life has been stressful and tiring, I have had the love and support of friends, family and the most wonderful daughter. If you have read this far, then thank you for hanging in there with me. I count you as friends, when you send comfort as a post, and support as a tweet.

Happy Birthday to me, for tomorrow. Virtual cake and bubbly to you all.

DH's drug issues!

Life has frantic of late but, whilst I have been knitting without stopping as my very sanity is dependent on the stress relief I get from it, there has been little photographic evidence that has made it from my phone or my camera to my computer.

As I felt the need to blog I thought I would share this photo with you. It is my most favourited project on Ravelry, and it is most beloved by my DD's cat Yoyo. Yoyo drags the fairy around with her and her once sleek blond hair is now well loved and dribbled upon. I like it that the cat appreciates my knitting!

Meanwhile today I drove the 16 mile round trip to my GP's practice 3 times: I took DH for his 9.10 appointment, sat in a cold car knitting for 20 mins, then DH appeared without having seen the doctor as he had been called away on an emergency. At home an hour later the surgery telephoned to say the GP was back and DH should scoot on down there - round trip no 2. The GP doubled the beta blocker dosage, doubled the PPI (protein pump inhibitor) dosage, doubled the renitidin (?) anti indigestion med, changed his soluble aspirin for a coated one, to try and reduce the adverse effect it was having on his stomach whilst maintaining the anti clot action and recommended regular paracetamol.

Four hours later DH in ever increasing pain and gets another appointment for 6pm this evening - the dreaded but wonderful emergency time. Journey to surgery and back - another 16 mile round trip. Extra drugs dispensed, to reduce bowel spasms.

Home, I'm self medicating with a glass of red and YH's Earl Grey socks for DD's partner's birthday in the lovely DIC Smooshy, blue lagoon. Missed my Knit and Natter evening, bugger.

On the bright side - MMother sounded chirpy again tonight - I love it when she's happy and hanging in there!

Sending love, please send chocolate, red wine and hugs by return please, seriously, please, now!

Not so easy jetting.

Life is sometimes a little too interesting. Lately, like this past couple of years, it's been too interesting and too complicated.

We flew to Spain for a quick respite break and, thanks to the wonderful people at Easyjet who cancelled our plane after technical difficulties, we spent 3 hours waiting for the flight, one our collecting our embarked then disembarked luggage, and 4 hours queuing to get a replacement flight. So, after around 10 hours at Alicante airport we had a flight for 2 days later, four cancelled appointments, a distressed madmother, who didn't know why I wasn't visiting or talking to her, an extra car hire bill of Euro 150 and aggravation from Easyjet customer service who appear not to want to abide by the terms of European legislation, particularly EU Regulation 261/2004 which says that Euro 400 should be payable to customers who have been denied flights. Automatic compensation - not claimed for; not argued about but payable. The "debate" rages on. But for now, my personal opinion, avoid any "service" that doesn't offer customer service.

Meanwhile DH's indigestion was getting worse, it became compounded by a gastric bug which gave him "traveller's diarheaa" Lovely! This was so bad that it affected his heart, and he now has atrial fibrillation which, coupled, with his slight heart murmur, has left him debilitated, breathless and weak. Once home the GP has popped him on beta blockers, asprin (totally aggravating the indigestion) and now PPIs to reduce the acid and hopefully diminish the acid levels in his stomach.

I've got a cold. Poor me. It's only a cold, but instead of being able to mope and keep warm I'm playing nurse to a sickly husband and minder to a mad mother.

All bad things have a silver lining and the knitting is yomping home. on 3rd pair of socks ... the latest for "son-in-law", ie partner of daughter, whose birthday is next monday. Also going well is the Aeolian shawl, Kingscot, DA's mystery blanket, and sock of the month club.

Meanwhile, as I have no knitting photos to show you, here's one of MM herself ... slightly puzzled as to why I am pointing a phone at her!!

I've met up with a lovely friend, whose Mother is waiting for the results of investigative tests, and my fingers are crossed for the results of that. She's a knitter too ... we agreed, like so many others, that knitting keeps us (almost) sane during stressful times.

So wherever you, and whatever you are knitting, or frogging, or sewing up, or contemplating, may the needles treat you kindly.

Love and hugs