I’m no saint, I’m a pure fud!

Tags

caring, dementia, the dark side

This is going to be my last post for dementia awareness week. I could’ve written about the bloody awful way carers are treated by the benefits system, but I reckon most folk reading this will know my views on that already and who wants to spend a Saturday night looking up statistics? So instead I thought I’d finish up by writing about why I felt the need to write.
   I didn’t write this week because I wanted to look like a sainted martyr to my Dad’s dementia. I also didnt write because I wanted sympathy. My intention really was to raise awareness of how carers feel as they plod through their daily routine. I’ve spoken to lots of carers over the years, some through work, some who are friends, some who are parents of kids with disabilities. Although the examples were specific to me, the themes of guilt, difficulties in maintaining relationships, worrying about the effect on children, not having time to look after yourself, but coping by having a sense of humour seem to be common to a lot of dementia carers that I’ve met. But although we’ve given up other parts of our life to care, we are all human, and I can still be a dick to other people if I’m having a bad day, just like anyone else.
  I wanted to be honest in what I wrote, because hopefully that will help folk going through the same thing see that how they feel is normal, even the totally horrendous bits that you never tell anyone. I have moments when I really hate my Dad. Having worked in a Social Work office, I spent years trying to get him to plan for exactly the situation we are in now. But he refused- now this could have been because of early dementia symptoms, but was mainly due to him being a lazy sod who expected me to do everything for him. He relinquished responsibility for himself long before he lost capacity, & the subsequent lack of “parental support” that I’ve received from him just gives me the rage. He is my Dad & I do love him enough not to let anything bad happen to him (like being put in one of the crappier care homes) but he hasn’t financially or legally planned for any of this. The majority of my current worries are financial. A recent survey found that the average Scottish carer owes £15,000, that’s a lot of worry when you are receiving benefits on the whim of a Tory government. I’ve heard social work staff so often bitch about carers behind their backs that they are “only interested in the money”- well damn right I’m interested in the money, what help am I to my Dad if I’m bankrupt or homeless? Why should I endlessly pay Dad’s £400 fuel bills on my credit card & never see the money back? oh aye because he’d do it for me so now I should do it for him?! 😧
   I get so angry with the way so called “carers support” projects work as well, allegedly I have a legal right to my own support plan- aye, a bit if paper listing how fucked things are for me, that’ll pay the BT bill or buy a new laptop. Maybe carers need that government/charity money to go directly to them as a grant or something? I’ve had the same advice from three different charities now, none of it is useful to my particular situation of needing support to appeal for NHS care funding, and they all seem to be trying to send me to each other. Two other charities have helplines based in England and so their advice is useless in Scotland & the advisor is left saying that they are looking things up on the internet, which lets be honest I can do myself because that’s how I got their helpline number. I cant believe that anyone gifting money to a dementia or cancer or carers’ charity expects affected families to struggle financially while the money goes on an “advice line” or leaflets. I’ve given a fair bit of money to charities over the years, does it really make me a cow to expect something back when I unexpectedly need it? I’ve been known to troll political party posts about carers if I see a lie, I’m also not feart to troll charity posts as well. Yup, being a carer hasn’t just made me feel guilty, sad, crazy, or lonely- it has mainly made me feel raging angry at the unfairness of it all.
  I’m human, I have “oh poor me” moments the same as everyone else- I’ve just chosen to post this on Facebook instead of boring folk with it face to face. I also choose to put some information about how Dad is doing on Facebook because typing it once is less painful than typing it 5 or 6 times to different people. I’m fed up with Facebook  users trolling other people who are supposed to be their friends because they openly share how they are feeling. You can always scroll past, & I’m well aware that the people who needed to read my blogs the most will have done exactly that. I like a good Facebook rant- so what? Better out than in, I’m not going to be less political just because I’m stuck at home with a sick parent & a child. It’s a wee bit of the real me that I’ve managed to retain while everything else got chipped away. It’s been over 30 years since I last cared for a parent (through cancer), & despite all the helplines and support groups, the reality hasn’t changed. Doctors still aren’t telling me anything, social work and the NHS are still playing “pass the parcel” with funding, I’m still having to do stuff for Dad that other people are being employed to do as their job. I reckon I’m allowed to feel angry. If that makes other folk uncomfortable & me a fud, fair enough.
   I’m also a lazy cow. No really! A lifetime of being a carer & having to do things for myself means I’m not bad at DIY & decorating. I can moan all I want about the state my house is in because I spend a lot of time at my Dad’s house or at the hospital but at the end of the day my redecorating hasn’t been done because I’ve sat on my arse feeling angry that I’ve got to do it myself again & jealous of folk who have partners or family to do it for them, and oh look! a new series of Game of Thrones, I’ll just watch that then & eat chocolate!
  But my worst “fuddery” is an inability to make/keep appointments- “I’m so sorry, I’m a pure fud, I forgot….” is such a standard text from me, I should have it stored as a template. Current circumstances have made me a ridiculously self-absorbed twat and I sometimes forget about friends problems and end up feeling like the worst pal ever because I forgot to ask how their granny is doing or when their kid’s next performance is. (Once again thank you my closest friends for being so tolerant and supportive over the last couple of months.) I do know that I’m not the first person with a parent with dementia, but I also know I’ll not be the last. There is nothing special about me or how I’ve dealt with things (seriously, never copy the way I’ve dealt with things, I’ve had some real fuck ups over the years!) But I’ve had the best advice from friends who have already been through it, I just hope that my wee Dementia Awareness Week diary is of some help to some other poor sod going through the same thing. 
  I’ll soon no longer be a carer. Dad will soon either be in a care home or not here at all. The worst thing about being a dementia carer is that the light at the end of your tunnel is your loved one going towards the light. The guy who came to fix Dad’s boiler (who was a bit emotional being around Dad because he had recently lost a parent to dementia) perfectly summed it up “you spend your whole life hoping that your parents will live forever, and then they get dementia, and the first few years are ok, but when it gets really bad you just want it to be over for them and you.” But how can you be a good person when you want a loved one to die? And that’s my main reason for writing the blog- I just want other carers to know that it’s alright to be angry, or frustrated, or to want to run away and just not deal with it today,  or to admit that you can’t do it on your own any more, or to just want it to be all over & for your loved one to be at peace, because that’s totally normal. There are thousands of other people waking up at 3am, unable to get back to sleep because they’re thinking the same thing.
   I will not be writing a blog tomorrow because I’m running away and just not dealing with it for a day. I can’t face listening to Dad repeat “What day is today? What’s happening tomorrow? Is it Sunday today? No I scored that out because Sunday was yesterday. What day is it today?” which he has done for 30mins to an hour every visit since Thursday. And you know what? Taking that break is perfectly fine!

Today I shall wear purple, with a red hat…

Tags

appearance, carer, caring, dementia

   Ages ago some MP got into trouble for describing carers as “the great unwashed.” A really horrible thing to say, but to be honest in my case, he’s not wrong. My appearance has slipped badly during my years of caring for my Dad. Aye, there’s a bit of menopausal weight gain involved, but I’ve been this fat before & still had polished boots, & £200 of clean, ironed clothes on. Now some days it’s midday, time to leave to go wherever, & I’ve still not washed, or combed my hair.
   My Dad’s catheter care needs had a huge impact on how I look, it’s really difficult to keep what you are wearing clean & often I’ll just wear jammies until he’s completely cleaned, dressed, & sorted for the day. Which can take from 6.30am until 10am on & off because Dad doesnt like to be rushed, but also forgets what he is doing half way through & will get really settled in his chair. Then all it takes is one catheter bypass or spilt cup of coffee & it’s back to the beginning again. I’m so embarrassed every time the carers arrive for the lunchtime visit at weekends because I’m inevitably still not washed or dressed. Then, even if I am up & dressed, I end up wearing crazy combinations of clothes because I got pish/puke/shite/blood on one half of my outfit & have to replace it with whatever’s clean. That “3 year old that was dressed by their Dad” look.
   So I’m spending the day in my jammies, but then end up wearing clothes to bed, because when Dad is really ill I constantly have to call out the district nurses during the night or need to take him to a&e. Sleep deprivation has had a huge impact on how I look, I’m simply too tired to be bothered half the time. I’ve noticed that my current outfits (baggy trousers & v-neck baggy t-shirts that are easy to sleep in) are really similar to current nurses’ uniforms/scrubs- comfy & easy to wash seems to be the way forward. I’ve given up on wearing jeans- too much kneeling & bending, take too long to wash & dry, & get stained easily.
   I’ve previously mentioned that the keech doesn’t just get on my clothes. My hair is a state & I really need a good haircut, but it isnt top of the list when our finances are so tight just now. I’ve 4″ roots since xmas, my fringe is nearly at my chin, and the only thing stopping me from clippering it all off are my son’s objections. So I’ll be rocking the yorkshire terrier look for a bit longer, although a friend pointed out the other day that if I give it a month & an extra inch of growth I can just pretend it’s the “ombre” look. 
  I actually can’t remember when I last put on full make up- possibly about 14months ago? Ach- it would only show my wrinkles anyway, but I’ve always been a stickler for wearing eyeliner & mascara no matter what, then last month even that slipped. Being a greetin’ mess isn’t a good look with mascara, and piggy eyes are probably better than panda eyes? I’ve now read the Christopher Eccleston article where he talks about his own experiences of having a parent with the same sort of dementia as my Dad. He talks about how the worst day of his mother’s life wasn’t when his father died, but the day she accepted he had to go into care. I can empathise with that because it is the reason why I’m an emotional mess just now. Having worked in care management in the same area that my Dad lives in, a little knowledge is a dangerous thing- I know how crap many care homes are, & I’ve spent years trying to make sure my Dad doesn’t go into one, but now it’s too late & I feel like I’ve failed him. A dam burst in me halfway through his current hospital stay and, after spending years keeping my chin up, I’ve been crying almost every day. That’s not an easy thing to admit if you live in the West of Scotland- I’d rather have a naked face than one that shows signs of greetin’.
  How I look has probably had more impact on my willingness to go out socially than anything else- while I quite honestly couldn’t give a fuck what I’m wearing any more as long as it’s clean, I’m still kind of embarrassed at the idea of folk that I haven’t seen for a while seeing me in this state. Which predictably means that the longer I’ve been without a bath, the shabbier my clothes, the more mental my hair looks, the more likely it is that I’ll randomly meet hunners of people in the street. Add having an absolute raging shouting match with my son & it is guaranteed that the person that I bump into will be someone that I’ve slept with when I was younger & fitter! It’s probably a good job I’m not in the singles market just now though, real life would never live up to a dating profile pic, and I do fear what sort of weirdo my current menopausal housewife look would attract? There was a daily mash spoof a while back about the crazy haircuts that middle aged women get to “stop divorced men hitting on them in supermarkets”- see to be honest that’s not just a joke- that’s #truestory #forreal, I’m well aware that part of my current crazy image is because I’m totally off the market because I’m already putting enough men’s needs before my own.
   But the worst part of looking a state all the time is the way it’s just an outward reflection of a complete loss of self esteem. I can laugh off that I’ve better things to do than my hair, that there’s no point wearing good clothes to do Dad’s laundry, that we’re too skint anyway, but there’s also the deep down feeling that everyone else needs to come first- even if that means there’s no clean towels or hot water left for me. There’s a scene in “how I live now” where the female protagonist has a daily routine of sleep, up, work, eat, sleep, while an actual war rages, unseen, in the background. How I live now is similar, a daily grind of not much sleep, awake, school run, housework, admin to arrange longterm care or grant/benefit applications, hospital visit, school run, son’s activity, eat, laundry, bed; while life carries on as normal in the background without me. It is hard to even have a sink wash when Dad has been on the toilet for 3 hours out of the last 4, but there’s not just no time or money for pampering, sometimes I feel like I’m failing to be a good enough carer for Dad and Son, so do I really deserve it? 
   “When I am an old woman, I shall wear purple” is my favourite poem. I’ve always looked forward to being a bit crazy when I’m older, when all the responsibilities are gone. But now I kind of resent the idea of waiting and being sensible for now, because I have to “adult” way too much anyway. Maybe that’s why I’m taking the chance to be a bit crazy in my appearance now, it’s not as if I have a boss or a work dress code? So I’m just going to wear purple with a red hat today, if that’s what I want to do, but I’ve realised that the reason why no-one is taking me seriously is because maybe the sort of shallow eejits who think image is everything think I’m the one with dementia? There’s always that fear if you have a close relative with dementia that any alteration in your own behaviour or appearance might be the early stages of dementia in you (not a genetic link, but because you’ve also been exposed to the same environmental factors). And that’s way more terrifying than meeting an old boyfriend when you’re wearing a stained t-shirt and no make-up. So do me a favour, & if you ever see me spit in the street- call the geriatrician! 

If you don’t laugh, you’ll greet

Tags

caring, dementia, humour in adversity

   I have just steered the good ship Carter through another month on the seas of financial insecurity, & I always have a huge sense of satisfaction in getting through without losing any hands or hitting the rocks of bank charges/bounced direct debits. I could’ve happily keel hauled my son on one occasion & appear to have stuck my Dad in the brig, but we’re all here, I’m not bankrupt yet, & I managed to have enough money for Son’s birthday & fuel bills of £550. The party seemed a success, so that’s the parental stress/guilt alleviated until October.
     It’s not all doom and gloom- I get to set my own hours, and up to January this year I rarely had more than a couple of hours a week when I had to be anywhere as a carer for a particular time. Once I get into it, cleaning the bathroom/kitchen/floors isn’t the worst job in the world and if Dad’s health is not bad I can spend a few hours during the week walking around a park or an art gallery if I want to. I was also able to indulge in a bit of gardening at Dad’s new house last year, producing a good crop of carrots, potatoes, and onions. Sitting up until 2am waiting on emergency district nurses gave me plenty of time to do Gaidhlig revision and watch TV miniseries or read books.
    There is some humour to be found in dementia caring too and you really do need a good sense of humour to get through it. Albeit not very PC humour, but if you don’t laugh you’ll greet, & I want it on official record that the day that I fail to laugh at a fart I should be put down in a humane manner. My Dad & I have honestly laughed together about his condition more than I’ve cried. In fact sometimes you can’t help but laugh even at the most inappropriate times. I have said the phrase “my Dad’s penis” more often than the socially acceptable never. That one never fails to make me giggle like a small child (fnah!- I said “penis!”)
    We’ve for some time now had a family “joke” about “how cancer do you look today?” With a rating scale of 1 – “you look like a fit 40 yr old” to 10 “you look like you just died- I’m phoning an ambulance.” Then one morning after a very rare night out, my Dad woke me up, took a look at me and said “‘Sake pet, how much did you drink last night? You look more cancer than I do!” The “cancer look” also resulted in Dad sitting very still in his chair with his eyes closed on days that he looked bad- only to suddenly shout “boo!” when I ventured close enough to check his pulse. 

   There’s also nothing quite like sitting down to watch telly with someone who cant remember if they’ve seen a TV programme before or if they even like it. First there’s the 15 minute “You told me you’ve watched that” conversation, then there’s trying to find something else that they think they havent seen before, then you give in (because you’re not supposed to challenge or correct something if it isn’t important and the dementia sufferer is getting upset) then after 15mins of “who is that? Why are they doing that? Who is he?” the inevitable- “och I’ve seen this before, so and so is the murderer” Aye- cheers for that spoiler Da, I’ve no seen it yet. Innit marvellous how someone who can’t remember what an omelette is can suddenly remember the entire plot of an episode of “Death in paradise?” Then there was the time that I got my Dad to watch “Flemming” with me- “you’ll like it, it’s about the guy who wrote James Bond” But then the s&m sex started, & yes it is still really embarrassing to watch a sex scene with your Dad in the same room when you are 45! When my Dad started to struggle with even watching TV we were advised by his dementia support worker to get some audiobooks as a distraction for Dad at times when he got distressed, like when I was leaving him to take my son to school. This seemed like a great idea until I ended up with a pure beamer because I walked in to my Dad’s room to hear what the detective was doing in the brothel… Lets just say the detective was getting his monies worth before asking any questions! And even Dad appreciates the irony of me being able to deal with his personal care needs without embarrassment, but mention anyone else’s bits when we’re in the same room and I’m beetroot. 

    My Dad’s slight loss of inhibition has made things a lot less tense though. The level of swearing in our household is, quite frankly, a relief and having a good old swear usually releases the tension for both of us after a hard day of incontinence explosions. I reckon “‘Sake!” should be the new Carter family motto. My Dad has frequently quite joyfully pointed out “‘Sake! How the fuck would I know where your glasses are? I’ve failed a memory test!” & Dad’s current favourite joke is to say “Why are you making me wear hearing aids? I can hear fucking fine….. What did you say?” at which point he grins, winks at you, & says “gotcha!”  I’ll always keep fond memories of my Dad’s “joke face” when he kind of sticks his tongue through his teeth slightly, while pushing his head forwards & then winking. 
   But there are issues with care or nursing staff thinking my Dad is joking when in fact he is desperately trying to cover up a mistake. It wouldn’t be the first time I’ve been told “oh your Dad was such a good laugh today” only to go in his room & find him in tears. The other day I asked him “what’s that on your wrist?” It was the words “GART” and “NAVE.” “Aye, I’m being fly,” says Dad. “If anyone asks me “do you know where you are?” I just look at my wrist & tell them Gartnavel!” He’s sat there all pleased with himself- I’m heartbroken, & struggle to say “but Da, you’re in the Southern” After brief confusion “och, I’m only winding you up! It’s a joke!” but Dad was trying as hard as possible to get the words cleaned off his wrist. 30mins later & totally deadpan he asks me “what hospital am I in?” I look at him obviously worried. “See, I told you I was just joking!” (Joke face). I’ve no idea at which point he actually was or wasn’t joking- but his speed to remove the words from his wrist suggests the second bit was to cover up his initial mistake. How do you explain to staff that that’s what he is doing? That it isn’t deadpan humour & all good fun- that it’s a man desperately trying to cover up his loss of memory or confusion. That his favourite “deadpan joke” two months ago was to shit in my hand when I was helping him with toileting. (Although to be fair my reaction each time would’ve been fucking hilarious to an observer- my son thought it was the most awesome thing ever, & I suspect he actively encouraged Dad to do it again?) 
   If you are a carer, the answer to the question “what’s that smell?” is almost always “you!” It is not unusual for me to be on a bus, only to discover that it isnt the jakey behind me who smells of shite. For some reason I manage to get it in my hair more than anywhere else, even when I wear gloves! This has led to my hilarious fringe in a clip or bobble hairstyle, which is cute on a wee dug but just looks strange on a fat 46yr old wumman. Although occasionally the random shite stains are useful- after discovering the source of the smell of shite was my hands I did have fun shaking the hand of a Labour party canvasser. Stinkpalm!

   Is it inappropriate to find humour in my Dad’s incontinence? Well if he can, I can I reckon, but I’m not sure how well this presents me as a carer to professionals. Every meeting about my Dad’s health I’m sat resisting the urge to have a Danny Dyer in Human Traffic moment (no, not the wanking bit, the “who the fuck are you people?” bit). I also have to repress the urge to say “fuck off you Tory prick!” to young hospital doctors. This ends up with me either muttering to myself or inappropriately giggling at something really important like my Dad’s need for more radiotherapy, or because someone said “wee” instead of urine. Although I actually quite revel in saying “shite” instead of faeces sometimes, cos it really makes the snobbier staff members squirm & make the same face I do when Dad is shitting in my hand. Or there’s the consultant who looks like one of the guys in the “Museum of the Imagination” sketch in “I’m sorry I’ve got no head” I cant take the man seriously, even though my Dad’s life is in his hands, I keep thinking of the words “in your imag-in-nay-tion!” at the end of every treatment suggestion.
   So humour is getting us through the worst times- maybe some folk will find it inappropriate, but it is binding us together as a family unit when everything else is tearing us apart. But as ever Dad is having the last laugh- we’ve already agreed that any memorial to my Dad will bear the words “‘Sake! I’m perfectly fine!” because according to him, he was, is & forever will be.

This. Be. The. Verse.

Tags

carer, dementia, parenting, young carers

Today is the day of my son’s birthday party. I forgot it was happening until his pal’s mum texted me about it. I was going to post a preprepared blog on dementia & humour to lighten the tone, but to be honest I can’t find much humour in my son’s situation as the grandchild of someone with dementia.
   Mixing caring & parenting isn’t as hard as it sounds. You have a good guilt free reason for not being there all the time- I’ve got a day off from hospital visiting today because it’s my son’s party (I didn’t even take a day off for myself when I was on crutches after falling off a ladder). My main breaks from caring are for my son to do activities, and I really welcome my 2 hours on a Sunday with tea & a scone while he is in drama class. We have still managed some long weekend holidays over the last 2 years- I don’t think I could have done that if I hadn’t had the excuse that my son needs a break.
   But my son’s actual birthday was a week ago, we couldn’t have a party on the day because my Dad was too ill and we had no money that week. It’s the first time that has happened since I became my Dad’s full time carer and it broke my heart. Because I spent my childhood & teenage years caring for sick relatives, I have always done my best to make sure Son’s life is as normal as possible. So that means his social needs take priority over mine, even if I have to eat only one meal a day or live on crisps & crumpets. That means going to the same activities anyone else can- and you’d be surprised how few give a discount for benefit recipients. It’s like a social cleansing of access to music and drama classes, when I was a youth worker there were loads of free classes or fee waivers for poorer kids, now you have to live in an “area of deprivation” to get anything, even if you are on less money than the families who live there. That might not look relevant to a blog on dementia caring, but Son probably needs space to be a kid more than most, it’s really hard to have to spend every weekend with someone who is constantly aggressive towards you because they don’t know who you are. I just wish more activity providers would realise that, instead of sticking kids in a “young carers’ club” ghetto. Maybe kids who are caring don’t need to be hanging around with other kids who are caring? Maybe they just need money to do the same stuff as their friends with their friends? If adult carers feel a bit isolated, why should they be too for the sake of a couple of quid? 
   Homework has taken a bit of a slip, and the school have been really good about it, but we just don’t have time for the random bullshit projects that the Curriculum for Excellence requires, those bits of homework for the sake of having set homework. No-one was thinking if families who are already in crisis have the money to pay for wifi, let alone actually have the time to complete a project when they came up with that plan, and it hasn’t been for the want of parents & teachers telling them. My son is so upset because he is the only one who hasn’t produced a healthy recipe complete with pictures of the result, but we’re living off beans & pizza this week, and have spent a big chunk of the weekend at the hospital again. I spent my childhood spending every weekend at hospitals- it sucks, especially when you have to go into school on a Monday & make something up to put in your “News” book, because you actually did nothing other than help clean the house & do the laundry, watch the wrestling & dr who, and go to the hospital. Although I got really good at writing book reports/reviews, because in the days before ipods you could always take a book to the hospital with you. 
   My own childhood experiences have meant that I avoid my son having to undertake any caring duties if I possibly can. We’re having a bit of argy bargy just now because at age 9 it’s about time he started hoovering and cleaning his own room, and he’s never had to do that before. I sometimes worry that I’ve made a rod for my own back because I’ve tried so hard to make sure that he doesn’t have to do caring/housework tasks and I don’t want him thinking that he is having to do them now just because Dad’s health is worse. The last few months have been a real shock for him- I’ve suddenly had to ask him to do things like the washing up or fetching continence pads or cleaning sprays. Then there have been the regular hospital and a&e trips, he’s started to see how very ill his Papa is.
   I’ve agonised over how much he should know about his Papa’s illness. I’ve decided to answer questions honestly, give basic reports on essential information, but shielded him as much as possible from seeing Dad when he looks terrible, and I’ve maintained his weekly routines with plenty of space to just be a kid. That’s really hard when you are all in the same house together though, so as Dad’s condition deteriorated since christmas, both Son & I have seen things I wish we hadn’t. Son has also bravely & stoically sat in waiting areas on his own while I’ve desperately tried to find a friend to collect him, while I’ve also been holding my Dad’s hand during emergency treatment. More than once Dad has had to wait until morning because I’m not taking my son to a&e to sit on his own on a Saturday night. Poor wee guy now sleeps in his clothes because that’s what we had to do during April because my Dad had so many emergency health care needs. Even though Dad is now in hospital my son thinks we might need to get up in the night if he starts to die. Nothing will convince him otherwise.
    This may be due to my not sugar coating my replies to questions about his Papa’s illness. Reason for this is after years of helping to nurse my mother through cancer, relatives decided not to tell me that she only had a few weeks to live as that would be too much of a burden for a 16 year old. (Yes really!) So I’ve always been truthful when talking to my son about the cancer and dementia. He has read “the milk is in the oven” booklet with me, he knows that the blood in Dad’s catheter bag is “normal” for him and nothing to freak out about, he now knows that the reason why his Mum is a bit rubbish just now (& we are sometimes missing activities) is because Papa only has months left. I have had such awful guilt over my mother and I’s terrible relationship because she was dying and I didn’t know, I don’t want that for my son. Even though he is still quite young, not knowing can mess you up much more than knowing. He’ll sit and tell nurses “my Papa sounds like he hates me, but it’s ok, it’s just the dementia, he doesn’t really know I’m his grandson.” I’d rather feel proud of him for understanding and being brave than have to support him working through guilt issues as a teenager or having him think that my Dad really does hate him. My Dad (in an astonishing act of everyday feminism) used to call me his “brave wee sodjur” when I was young, I don’t know how much I really am breaking the cycle of being a young carer if I am proud of my son’s bravery in adversity, but I wish Dad could see that my son is being “his brave wee sodjur” too?
   But anyway, today is Son’s big birthday celebration. Time to put on a happy face and chase the troubles and tears away. I’ve candles to find and party bags to make up. And I’m going to totally kick arse at laser tag! (I’ve actually made my son cry by beating him at it, I’m not that precious about his welfare, but now he’s quite proud of his auld Maw being “the best at laser tag ever!”) but why can’t I get Philip Larkin’s words out of my head? 

“They fuck you up, your mum and dad.  

They may not mean to, but they do.”

When did you last see your friends?

Tags

carer, dementia, maintaining relationships

I have some absolutely amazing friends that I couldn’t have got through the last couple of years without. I don’t say that enough but that’s not the West of Scotland way. This piece is more generally about maintaining friendships in adversity- I’m blessed with not having as big a problem as I could, but there’s things to do with relationships that worry me, & probably a lot of other carers too? I’m not into tragedy porn, but back in the 90s I accidentally read a book called “When did you last see your father?” by Blake Morrison, and it’s one of the best descriptions of dealing with a parent’s death from cancer that I’ve seen. He ponders on whether we ever really know our parents as people? I’ve borrowed his title because right now it seems relevant to the difficulties of trying to maintain relationships when you’ve been a carer for so long you don’t know who the fuck you are anymore, let alone who anyone else is. I have to be completely detached from the person that I used to be because if I think about it too much it makes me jealous of other people & it breaks my heart.
I think a lot of people think that caring for someone with dementia is like caring for a child- albeit a child with massive strength who can punch you onto your arse if they dont want to do something. But that is really patronising for the person with dementia (who may have long spells of clarity inbetween episodes of reduced capacity) and creates huge difficulties for carers, because services then create supports which are identical to child care, and that doesn’t match needs at all. Yes there are similarities (sleepless nights, dealing with toileting problems, having to be physically present in the same space as someone for safety reasons, issues with eating/drinking, explaining language constructs, explaining social behaviour norms). But there are huge differences- firstly this is an adult with whom your relationship has drastically changed, but they need the same degree of respect in communication and decision making that they had before, even when their capacity is long gone. Not that children deserve less respect, but how you explain something to & accept the decision/reasoning of an 8 year old is very different to an 80 yr old & (more importantly) an 8yr old will eventually accept that their lack of life experience means they might be wrong! Secondly an 8 year old will gradually understand and grow in capacity, yet pitching the right level of respect & communication for an 80 yr old with an 8 yr old’s capacity is really difficult. It is impossible to predict how that person will be by the end of the conversation- capacity can ebb and flow over a couple of minutes. The resulting constant repetition of information is mind numbing, frustrating, and one of the worst aspects of the condition for carers to deal with.
Then there’s a daily battle with professionals over “whose decision is it anyway?” during early stages of dementia- and an astonishing degree of institutional sexism. Yes my Dad desperately wants to live at home with me, his daughter, but why is it presumed that this will just happen without consulting with me? Apparently I “might want to take some unpaid leave from work” or “do you work? No? College? (eye roll) your father needs more care input just now but could you just…” And only once has someone asked “is there anyone else who can help? Are you an only child?” The general professional consensus seems to be that a woman should just drop everything & run to the side of their parent/partner/sibling- I’d genuinely like feedback from male carers of parents to see if their experiences differ. Not that I object in any way to caring for my Dad if he needs it, (I wouldn’t have stayed on the financial pittance of £62.10 for over 35hrs work a week unless I did care enough about my Dad to be his carer) but if one more person says “they did it for you, so you do it for them” I’ll suggest they give my Dad a shower so they get a nice elbow in the ribs! Seriously, it was the 1960s/70s, he’s a male relative, he wasn’t even there half the time, I’ve never heard a more inappropriate comment in my life! What if my Dad had abused me? (please note, he didn’t!) It’s not uncommon for people to end up caring for family members who have behaved badly towards them in the past, simply because there is no-one else. Yet that phrase has been said to me so often, I’m left wondering why is it so acceptable? And the only answer I can come up with is sexism. There’s actually a legal judgement on personal care that it should not include those duties that would normally be expected of a mother, wife, or daughter. So basically being female means you are expected to look after relatives because the law says so.
Another major difference between childcare & adult care is that the relationship is very different before the crisis happens. You have expectations of reciprocal love & support from an adult that you don’t have with a child. With a child there is also an end point to personal care needs. You can count the nights towards them “sleeping through” instead of lying awake in tears wondering how much worse things are going to get. I’d like parents to just for a few seconds remember what you felt like with the sleep deprivation of caring for a new born, & ask “how would I feel if I knew that was going to continue endlessly for an unspecified number of years? That it was only going to get worse & not better?” I also reckon that a lot of parents gladly chose to be in that situation, no-one chooses to have dementia or to have a loved one with dementia. It is heaped upon you- and you cant just run away because of the unbearable guilt.
The feeling of guilt when you just want one night off is horrible. It’s socially acceptable & relatively easy to get a sitter for your kids, it’s really difficult to find someone paid or otherwise who’ll sit with a dementia sufferer until 11pm on a Friday. It’s also really difficult for even close family to cope with the agitation, shouting out, misplaced aggression, & the just plain strange behaviour that can accompany the sensory difficulties of dementia, so having friends round is increasingly hard. Then there’s the times when everything has been planned months in advance only for the dementia sufferer to have another health problem (such as a cold or a virus) & you arent going anywhere. That makes keeping up relationships with friends difficult (other than via social media or phone) you can pack up a small child into a stroller/carrier, you can leave an older child at a friend’s house, but you can’t suddenly upset an older relative’s routine or just take them with you, so the worst part of dementia care is the isolation. All the day care in the world won’t let you simply sit down with a glass of booze & some pals on a Saturday night. Even if you manage out, you end up appearing to “over share” as you unburden yourself of your guilt & grief during the few contacts with friends that you do have- your friends turn into your counsellors. 
There are projects which give valuable support- and I really do urge anyone reading to donate to any local charities that provide a sitter service for dementia carers. But like most things these days, they are hopelessly oversubscribed, & probably should be paid for by the government & not charity donations. But even that doesnt take away the internal dialogue which all carers have- “Do I really need to go to this? Do I deserve this break? Is it worth it? Will I be able to live with the guilt if something happens?” That’s not just for frivolous things like going to the pictures- I’m personally suffering from “The Guilts” because my Dad deteriorated terribly during the month that I had time off to have surgery. It’s often forgotten that a lot of carers are themselves older (60 year olds caring for 80 year olds) and have their own health difficulties but how do you make yourself feel ok about going for a pint when you cant even get to a podiatrist?
Sometimes the only way to deal with it is to detach from the situation completely, with disastrous consequences for your relationships. Bottling things up generally turns folk into short tempered arseholes; I can be outstandingly rude to folk in shops or on buses. But detachment has pretty much destroyed my relationship with my Dad. Being there as a daughter is just too emotionally painful, but being there as a carer is about tasks & routines. I cant remember when I last just visited my Dad, partly because he isn’t really my Dad any more, but mainly because focussing on housework is better than being a greetin’ mess on the sofa.
When did I last see my friends? I dont really know. Yes I’ve texted, PMed, had a chat over tea & cakes, been out for dinner, but each contact is heavy with worry that I’m a boring bastard who only has bad news to bring to the conversation & I salute those of you who have stuck with me! I have a roll of honour tattooed on my heart for you. But sometimes I’m struggling to see where it is still a normal friendship, where you share a laugh & some good times & a release from the daily grind. Are people my friends or have they become my childcare provider when we’re stuck in a&e with my Dad for 8 hours, or my counsellors, or my social worker, or my welfare rights advisor, or taxi, or painter & decorator? That’s a whole other level of guilt, because I know right now that I can’t give much time or support back. I am truly sorry that I am so rubbish at keeping in touch sometimes, & I deeply regret only seeing people when I need something, so now I’ll give people space & not ask unless I’m desperate but that further strains a relationship, because then I really do only see them when I need something. I’ve lost count of the “why did you not tell/ask me?” conversations as well.

So my top tips for anyone who has a friend who is caring for someone are- it’s ok to not know what to say about their situation, they’d rather talk about what you’ve been getting up to anyway. It’s their turn to be a needy cow but you can message or call at any time if you feel like it’s your turn, dealing with someone else’s problems is a good guilt free way to take time off from their own.  And most importantly that you don’t actually have to talk about the medical condition- it’s absolutely ok that you don’t want to talk about dementia or cancer or whatever. All you need to be is you & all they need to be is them, because what carers need the most is to be reminded that it’s ok to just be a pal for a bit. Tell them your stories, drink together, dance together, laugh together- because if you don’t laugh, you’ll greet!

It’s called “driven demented” because that’s how your loved one’s dementia makes you feel….

Tags

bladder cancer, carer, dementia, vascular dementia

My Dad was diagnosed with vascular dementia in July 2014. He also has inoperable bladder cancer, so he went undiagnosed for a long time because older people with urology problems who dont drink enough display similar symptoms to dementia if they get dehydrated.
We’ve been on a long journey towards the point where we are now. My Dad has never been particularly good at “adulting” and I’ve been looking after him in one way or another since I was 15. The things I loved about my Dad when I was a child were the childlike qualities of his character, as an adult though they’re a bit of a let down & I often wonder when exactly I became his parent? Everyone goes through that role reversal as their parents get older & need more help, mine just happened a lot earlier than most. Probably around my mid 20s when it became apparent that my Dad (who was already in his 60s) wasn’t coping at all well with adulting on his own. But then in my mid-20s I was becoming aware that adulting sucks & everyone is just winging it anyway.

We probably should have seen more of each other when I was in my 30s, the signs that things weren’t quite right with my Dad were (in retrospect) already there. But I was busy, busy working, busy partying, busy drinking, busy dancing, busy doing all the things that it should be perfectly ok for adult children to do. One thing I wasn’t busy doing was building a career, or buying a home, or doing a postgraduate degree, or having a family, or moving away, or doing all of the things that people do in their 30s because of my Dad’s increasing inability to make it through a week without some sort of crisis or meltdown. Like I said the signs were already there but I was making the most of today before the inevitable tomorrow.

When I was in my 20s I had a recurring nightmare that I had to look after my Dad & a small child at the same time. Now I’m living the dream! I put off a lot of life’s milestone achievements because I feared having to nurse a sick parent at the same time as going through life’s more stressful moments (exams, job promotion, moving house, etc) because I had already watched a parent die of cancer during my teenage years. Going through the long painful death of a parent is hard enough for an adult, but my childhood & teenage experiences meant that I refused to go through that again- & I definitely did not want my own child to grow up visiting hospitals the way I did.

But here we are- a family consisting of a sick parent, a young child, & me. And for the most part, until 6 months ago, it has been ok. It is what it is, I’ve learned to be a much better adult through sheer necessity. I probably could be a better parent. I maybe could be a better carer. I feel guilty all the time because there’s only one of me. I feel guilty sometimes that I treat my Dad like a second child, but that very much seems to be how he wants it to be. I feel heartbroken when I leave my Dad alone because I wouldnt leave my son on his own & they appear to be at the same level of mental ability. I am destroyed by sorrow that my Dad doesn’t remember who my son is. I feel like no-one is listening to me or respecting my views. I am distressed that during my Dad’s moments of clarity he suddenly realises he is in pain & is writhing and screaming. I am agitated that medical staff don’t understand the difficulties that comorbidity of cancer & dementia bring for pain management. I am forgetful because I have so many things I have to organise each day, some of the less important things slip away from me, like buying bread & milk, or remembering where I left my reading glasses. I wander the house at night because I’ve been waking up at 2am & 5am to tend to my Dad’s needs for so long it’s now just part of my sleep pattern. I feel like I have dementia myself, because I cant find anything (my Dad constantly tampers with things or moves them about the house) & I constantly have to repeat sentences 3 times, because that’s how my Dad understands language. My Dad’s needs and behaviour are literally driving me demented too. But it was only last week that I finally understood what the expression really means.

I’m not special, the miracle of facebook has shown that many of the people that I went to school with have travelled this path before me. Millions more out there share my pain, burden, guilt, and sense of loss. None of us are saints, none of us are sinners for needing benefits to pay our bills while we do our 35 hours minimum caring duties. Everyone’s journey is different, because everyone’s dementia is different. What is common is the sense of guilt & helplessness, for both sufferer & carer- what is common is the sense of fear & anguish at watching a loved one disappear in front of you- what is common is a need to have hard work in adverse circumstances recognised & not denigrated by governments. So I’m spending dementia awareness week writing a daily blog because I want other carers to know that feeling like you’re “driven demented” is perfectly normal. Dementia is just a different kind of normal, because it affects a lot more people than you think.