Author Archives: Jak

When Help Doesn’t Help

I am extremely competent and one of the strongest people I know emotionally so there is a tendency for the people around me to think I never need help. But we all have times in our lives where we need support, whether that’s practical, emotional or otherwise, and I am currently at one of those times. I have looked after my parents during the pandemic for 15 months without a single day off and I am on my knees in every conceivable way, but actually finding the practical help I need is proving elusive.

My sister-in-law rang me the other day to say that she would sleep at my parents house one night to give me a break. Which was really kind of her, but when you have M.E. one good night’s sleep (not that I would manage that as my hip pain is currently keeping me awake much of the night) is next to useless. In the last 7 weeks I have used up my energy reserves for the next 4 months and what I really need is 4 months in the Bahamas doing nothing but swinging in a hammock just to get back to the level of illness I had in February, but when I tried to explain to my s-i-l that one night’s kip wouldn’t make even a tiny dent in my fatigue I was met with exasperation and the insinuation was that I was a martyr and making my life harder than it needs to be.

It is familiar territory. I have been blamed for the complex, unusual symptoms of my illnesses from the get go. I don’t fit neatly into most healthy people’s image of an ill person because “I don’t look sick” and their only experience of “fatigue” is the healthy tiredness experienced after a 15 mile trek up the fells or a busy week at work. A couple of lie-ins on the weekend and they’re raring to go again. There is simply no comprehension of the complex nature of the fatigue and illness symptoms of M.E. or the unrelenting pain of hEDS.

For example, when I’ve been in an M.E. relapse a couple of my neighbours have offered to walk my dog for me but it’s been on their terms. Even though they are at home all day they’ve wanted to take him out at 5pm, smack in the middle of my worst time of the day when I am usually in bed. I would then have to get up out of bed to hand him over and get up again at 5.30pm to dry him off and accept him back, meaning I’d had less rest that day not more! To me, if you’re offering to help someone you should ask them what they need and fulfil that need. You shouldn’t ask the person what they need, then say you can’t meet that need because it interferes with your own life. Most ill people struggle to ask for or accept help at the best of times, so when they do it should be made a priority or not offered at all.

When I was severely affected and bedridden, the (very) occasional old friend would request to come and see me………….then stay for hours, when I realistically only had the energy for a 10-15 minute chat. In the end, I refused to see anyone because these visits always made me ill for days if not weeks afterwards. My needs were ignored, in favour of the wishes of the visitor.

If you want to help a friend or family member I think there are some points to bare in mind:

  • Ask what help is needed. Listen and don’t judge or super-impose your own needs or wishes on the other person. If you are helping in someone else’s home, ask them how they want a job done or how they want a meal cooking – don’t do it your way, it’s not your life it’s theirs.
  • If you’re visiting someone who is sick, ask beforehand how long the visit should last then LEAVE when the time is up, even if the sick person is enjoying the company. Offer to come back another day and keep the appointment.
  • Be realistic about what help you can offer. Is this a one off or more regular? Can you only help at certain times of day, or days of the week? Will there be times you are unavailable, eg school holidays?
  • If you offer to help, follow through. The person needing the help is relying on you.
  • Be compassionate. Put yourself in the other person’s shoes and ask how you would feel in their position. There is often much guilt about asking for or needing help, with the sick person feeling like they are a burden. Reassure them that is not the case and that you are glad to be able to assist.

I have been, and still am, on both sides of the helping coin. I have/do need help myself (not that I receive it often) but also offer help not only to my parents but to my elderly friends and neighbours particularly during the pandemic. Despite all my offloading here on my blog, my Mum has never once been shown any of my anger, frustration or exhaustion and has only ever been shown patience, kindness and loving care, alongside constant reassurance that she is not a burden. I feel we’ve become hugely selfish as a society and have lost the art of true empathy and compassion.

Helping someone doesn’t have to be some huge committent or time stealing event. It often doesn’t take much to make someone feel loved and cared for. My Mum’s cleaner made them some soup for their lunch last week, but made a point to say that she’d made enough for three and to make sure Jak had some as well. I bawled for an hour after hearing that because she was the first person in all of these months who had shown me some practical care and I was hugely grateful for that.

We are all going to need help at some stage in our lives. Treat others how you hope to be treated when it’s your turn to be vulnerable.

Weekly roundup

There is good news and bad news this week. The good news is my Mum has perked up no end and is now eating well and looking quite bright in herself. The bad news is that my Mum has perked up, death is not looking remotely likely and I am feeling even more trapped than ever because there is no end in sight. If anyone thinks that makes me a bad person they should try living my life as a Carer for the past 12 years.

Mum’s care had run really smoothly all week, so on Friday I felt I could return home and just visit each afternoon. However, the second I left everything turned to shit.

Mum hadn’t needed me in the night for 9 days, yet the very first time I wasn’t there she’d woken my Dad twice as her legs were in spasm and she wanted some painkillers. I’d been giving her them before bed every night if she’d needed them but of course my Dad hadn’t thought to ask, so yesterday I put them up in her pill box and she’ll have them every night regardless. My Dad needs his sleep.

The carer arrived at 8am on Saturday morning to get Mum out of bed. We use a ceiling hoist from the bed to the wheelchair, wheel her through to the lounge and use a portable hoist to transfer her from the wheelchair to the recliner chair. Only the portable hoist wouldn’t work. Instead of just bloody ringing me to ask if I’d had any issues with it while I’d been living there (which I hadn’t) , the Carer and my increasingly stressed Dad struggled on for half an hour before deciding to try unplugging it, when it had worked fine. It doesn’t work when plugged in as it’s designed to be battery operated, which I could have told them if they’d bothered to ask me. In fairness, though, the Carers should know this – they work with hoists all the time!

Despite yesterday’s shenanigans, when I rang at 9am this morning my Dad was stressed to the eyeballs, my brother had apparently just arrived as my Dad had rung him to go down and the place was in chaos. The portable hoist wasn’t working again and instead of either the Carer, my Dad or my Brother ringing me they’d struggled on for a whole hour trying to get it going. When I asked my Dad if it were plugged in he said “yes, it’s plugged in!” so I said, again, that it only works if it’s unplugged. Problem sorted in 3 seconds flat. I get so annoyed when they exclude me from these sorts of things, because 99% of the time the problem is easily fixed (the case of my Mum’s “missing” hearing aid yesterday springs to mind, which if they’d bothered to ring and ask me I could have told them was on the shelf above her bed but instead they spent an hour searching for!). They think they are doing me a favour by not ringing me, when the reality is they exhaust and stress my Mum when there is no need which makes me furious.

I go through from 3-6pm and do all the things my Dad doesn’t think to do and the Carers don’t have time to do, like bleaching the loo and sink which gets splashed with pee and poo each time the commode is emptied, giving Mum clean sippy cups, cleaning her inhaler, combing her hair, making sure her hearing aid pipe isn’t blocked, putting Dipbrobase cream on her elbows and heels, putting on some facial moisturiser and lip balm, making the bed and leaving the bedroom ready for evening, changing the towel and facecloth used to clean her bottom, checking her feet aren’t too cold and putting on socks if needed, emptying the bin I’ve placed in the bathroom for the used incontinence pads and the carer’s gloves, cutting Mum’s nails etc. etc. etc. I also feed Mum her tea so my Dad can have his in peace.

I had my first counselling appointment through Hospice at Home on Friday morning. I spent the entire hour crying and offloading and felt much better for it. I also gave my consent for my details to be passed to the Respite Care team. I realised just how exhausted and stressed I am after 15 months of taking care of my parents through the pandemic with no help and not a single day off, and if respite care at home for Mum is offered for a week or two I’m going to take advantage of that. Which doesn’t mean I can just forget about my parents, because I liaise with the District Nurses and GP, order prescriptions online and incontinence pads each week, do their shopping and open their mail, but at least the workload lessens. I’d give anything to be able to go abroad for a month in the sun and not have to think about anyone else but myself – dream on.

It’s so nice to be home. Due to having M.E., my environment and routine is carefully managed to enable me to function and having all that taken away has been incredibly hard. I imagine, though, it will be several months before my back and hips forgive me for all the physical work I’ve put them through during the past 8 weeks – they are back to torturing me each night 😕.

Right, I need to think about making some lunch though I’ve no clue what I’ll have as my freezer is virtually bare – I’ve had zero time or energy lately to make low histamine meals to restock. Take care and stay safe x

Emotions as a Carer at the end of life

I am not coping well emotionally with the situation with my Mum. When you Google “coping with the death of a parent” thousands of websites pop up explaining how you can have a lovely final few weeks/months with your Mum or Dad and how to make that meaningful. None of them tell you what to do if you’re utterly exhausted, have already been caring for years and feel anger, resentment, frustration or if you actively want your parent to hurry up and die. There, I’ve said it out loud. I’m waiting for the thunderbolt to strike me.

We need to get real about death. Not everyone has a positive relationship with their parents and that doesn’t magically change when they approach the end of their life. While I am tender, loving, patient, kind and taking care of my Mum’s every need I am actually seething inside. I have looked after my parents, and run two households, for over a decade now and I have had enough. I lost the best years of my adult life to severe M.E., and just when I managed to get my health stabilized and I was finally able to venture out into the world, in 2009 my Mum got sick. Then 4 years ago my Dad also got sick and my life almost ground to a halt. Because of my own health issues I don’t have the energy to care for my parents, their home, my dog, my home, myself and have energy spare for hobbies and a social life.

Covid has not helped. I have looked after my parents’ every need for 15 months already, and now to have to spend another Lord knows how many months doing nothing but looking after Mum as she dies. I feel utterly overwhelmed.

I’ve never wanted children because I never wanted to be in this position. As a kid I was helpless as I was dragged along in the wake of my Mum’s decision to leave my Dad, her mental health issues, our homelessness, her addictions, her rash remarrying to my Step-Dad, the ferocious arguments and all sorts of other traumatizing events. I subconsciously vowed I would never put myself in a situation ever again which I could not leave if I were miserable. Yet here I am. Trapped. And I am resentful of that. Hugely resentful.

I am getting older and my own mobility is rapidly decreasing due to hEDS. I am acutely aware that the time I have left to pursue my photography, to go on holiday, to move house and do all the other things on my checklist is hugely limited, and all of the time spent on my parents is robbing me of my opportunity to have a life of my own. The pandemic lockdown is coming to an end, yet I am still imprisoned within 4 walls. I feel that, so far, my entire adult life has been lost to sickness – either my own or my parents – and I am filled with rage at the unfairness.

I have kept a lid on my feelings for the better part of a decade, but my Mum’s approaching end of life seems to have brought everything to the surface and I can’t keep them bottled up any more. So today I rang the local Hospice at Home team who offer counselling services and asked for their help and support. I need some outlet for all the negative emotions I have suppressed for years and really hope the counsellor can help me find some kind of peace.

For anyone coming across this post, either now or in the future, who isn’t feeling what society expects them to about losing a parent or loved one, just know you are not alone. Everyone’s situation is different and you are entitled to feel any emotion under the sun. It doesn’t make you a bad person, unkind or uncaring. It makes you human.

A New Routine

Now all the equipment and care is in place for my Mum my life has developed a new routine. I arrive at my parents’ apartment 7 miles from where I live at around 5pm each day. I feed my dog then I feed my Mum her tea, sat on a tiny foot stool by her recliner chair in the lounge with my back breaking (mum can’t feed herself as her tremor is so severe she can’t get a spoon to her lips). Last week she barely ate anything, but this week her appetite has come back in spades so tonight she had half a tin of carrot & coriander soup and about 5 teaspoons of spotted dick and custard! I’ve left her in the chair with headphones on, listening to Ken Follet’s latest audiobook which I downloaded for her from the library.

I then prepare Mum’s bedroom for the night. Draw the curtains, put her a drink and make sure the bedside table is pushed back enough to get the commode next to the bed.

Next I get in my pjs, make myself something for supper (usually a scone or some hummus and breadsticks, anything quick and easy!) and get into bed. Normally I’m in my pjs and in bed by 4pm each day, so to be 2½ hours behind is taking its toll.

I have an hour’s peace before the night carers arrive at 8pm to toilet Mum and put her to bed. I leave them to it until it’s time to hoist her (she can no longer stand) which is better with two so I lend a hand. After the carer leaves I feed Mum her night-time tablets and make sure she’s in the right position in bed and her heels are hanging over the edge of the pressure wedge so they’re not sore in the night. I chat to her for a while then put the telly on, with the timer set for 45 minutes so that it turns itself off. My Dad then goes in to say his good-nights.

The alarm on my phone rings at 8.30pm each day to remind me to turn on the baby monitor in my bed-room in case Mum needs me and to put the lounge hoist on to charge. I get into bed and would love to edit some photos or do something relaxing, but I’m always too tired. It was the last episode of Line of Duty last night, so I settled down to watch that………..and missed half of it because I fell asleep. Luckily my parents have broadband so I was able to watch it on Catch up on my laptop this morning!

I’m not sleeping well. Despite the new mattress I’m not used to being in a tiny, cramped bed with the dog and my back and hip pain is off the Richter Scale. I’m having to keep my TENS on all night (which you’re not supposed to do) but it’s the only chance I have of ignoring the pain enough to sleep.

I’m always up at 6am, regardless of how badly I’ve slept. Bertie has woken me every single day at the crack of dawn for the past 11 years like my own personal, annoying alarm clock. I let him outside for a pee, then feed him after checking in on Mum who thankfully is usually sound asleep. I make myself a brew, then get back into bed for an hour to catch up on my emails and Facebook, trying to stay connected to the outside world and my friends.

The carer comes at 7.30am to get Mum up, washed and into the recliner chair in the lounge. I help with the hoisting and putting Mum in fresh undies as she needs to be rolled, then while she’s being washed in the bathroom I make the bed, open the curtains, put the hoist on charge and take her cup into the kitchen.

Once Mum is settled in the lounge and the carer has gone, I do all the little personal things like combing Mum’s hair, putting in her hearing aid, putting on some face cream and lip balm, putting in eye drops, some talc under her boobs to stave off the awful sweat rash we spent months getting rid of last year, Diprobase moisturiser on her elbows and feet, and finally a spray of Chanel no.5.

I get her a drink and feed her her morning medication, followed by her 2 inhalers. I then cover her with a blanket and put the news on while I myself get dressed and grab some breakfast. My Dad takes the dog out at 8.45am every morning which is a huge help and while he’s away I clean. Bearing in mind I can’t have the Covid vaccine I’m very wary about infection from all the Carers. So I wipe down the hoist controls, door knobs, toilet handle and commode handles. I then wipe down the commode itself, make sure the toilet is clean and disinfect the sink (when the Carers empty and rinse out the commode pan, pee and poo get everywhere and I don’t want my Dad or I getting an infection 😕). We have two different coloured flannels for the carers to wash with – the black ones, and the black towel, are for Mum’s bum area so I put those in the washing basket each day and put clean ones out.

My Dad comes back at 9.45am and I gather my belongings together to return home, leaving Dad on day duty with the Carers who come at 11.45 and 4pm to toilet Mum. You can almost guarantee that on the drive someone will ring me – this morning it was the District Nurse asking how Mum’s bum is doing (it’s worse so the nurse says she will do a visit today to assess if it needs dressing).

Once home, I water all my bedding plants (some desperately need potting on, but I don’t have the energy), make myself a brew and get into bed. Today I spent 2 hours doing paperwork, including transferring loads of cash between my parents’ Paypal account and mine. I go to Sainsburys or M&S and buy things for both them and me, so then I have to transfer what they owe me via Paypal (I’m on too low an income not to be reimbursed). The nurse rings again to say Mum’s skin has now broken out and she’s going to get the Doctor to assess her. She’s also concerned Mum hasn’t peed today yet, so tells me to ring her tomorrow if she still hasn’t passed urine.

I make myself some lunch (oven chips and a fried egg – no energy to cook properly), then take Bertie out on my mobility scooter. I then have an hour in bed resting before getting back up at 4.3pm to go back to my parents’. And another day is done.

My M.E. is really playing up now and I feel like I’ve been run over by a bus. I have no clue how long I can keep this level of activity up before my body refuses to go on. It’s still not being recognized by anyone that I am ill myself and I’m just expected to do what a healthy daughter would. I try my best but I’m conscious that my health absolutely isn’t up to the task. I’m just taking each day as it comes.

Weekly roundup

I don’t really know where to start with this week’s roundup. I can’t believe it’s Sunday already because it feels like the days have passed by in the blink of an eye, while at the same time last Sunday feels like a lifetime ago.

It’s been stupidly busy as I wrote about in this post and by Friday I was on my last legs. There is so much to remember (it’s a wonder my phone hasn’t blown up with all the reminders every day!) plus new routines in place every two seconds as Mum’s needs change, that most of the time I don’t know whether I’m coming or going.

Last week, Mum wasn’t eating at all, was sleeping all the time and I would have said she only had a few weeks to live. However, this week she’s been really perky and quite chatty, and is now taking about 6 teaspoons of lunch and 6 teaspoons of dinner each day, on top of drinking well. She even ate some Jelly Babies someone brought her yesterday! I Googled “how long can an elderly person live only eating small amounts” and there was zero useful information. It was all about if someone totally stops eating or totally stops drinking, or how to encourage your elderly relative to eat, with no info on vastly reduced food intake at the end of life. I’ve never cared for a dying person before and haven’t the foggiest clue what’s going on.

So I rang the GP and asked him where we were in the process and what to expect. He came to see Mum that afternoon as no Doctor has seen her this entire time, and thinks it may be months for Mum not weeks. Which was a shock to be honest. I asked him what the cause of death would be attributed to and he said that as Mum already has so much wrong with her and we don’t know why she’s suddenly gone downhill it might just be basically put down to “old age”. Although, of course, she could develop a chest infection or similar which would then cause her to pass more quickly and be classed as the cause of death.

I’m going to do a post this week on the emotions I’ve felt in caring for my Mum, because you read about this lovely time spent looking after your relative at the end of their life but the reality is very different. I liken it to having a baby. Some people have a text book pregnancy, a loving husband, plenty of money, a safe home and a good birth, while others are alone, skint, living on a council estate, have an emergency caesarian and post natal depression. Huge life events are uniquely experienced because everyone has differing circumstances. We need to be more honest about the fact that it isn’t all hearts and roses for everyone.

Three days this week I have managed to get to my own home during the day time. It’s lovely to be in the peace and quiet, but I haven’t had any time to rest. I have 62 bedding plants I’ve lovingly grown from seed on my kitchen windowsill (yes, I know that’s not important at the moment before anyone tells me), my bed was filthy so I’ve had to strip it and get the sheets washed and dried, I still have laundry to do and mail to open and deal with. My dog still needs walking (my dog walker has chosen these 2 weeks to have a “holiday” – thanks for that!) and my car pressure gauge was telling me my tyres were flat so I’ve pumped those up. I’ve appealed the parking ticket I was given at the hospital and made 18 smoothies to go in the freezer (my MCAS and HIT aren’t going to take the next few months off and as stress always makes my mast cells more twitchy I’m trying to be super careful what I eat). I also still have to make my dinner every day then stack the dishwasher, un-stacking it the next time I go home. And in between everything I’m trying to find the energy to have a bath and wash my hair at least every 3 or 4 days. Then there’s the smell of sewer in my utility room which I was in the middle of trying to sort out before all this happened which has had to go on the back burner. When I get back to my parents’ house and my Dad says “have you had a nice rest?” I do actually want to lamp him.

I am exhausted, stressed, in agony physically, angry, resentful and a host of other emtions society tells me I shouldn’t be feeling. I’m also hungry so I’ll write about those another day! Until next week x

End of life care

As a society, we don’t ever talk about the ends of our lives. How will we cope with declining mobility? Who will our caregivers be? Can we actually afford to die (because trust me when I say it’s a surprisingly expensive event)? Yet death will come to us all.

On Saturday, it became clear that my Dad could no longer cope with my Mum on his own. He was exhausted and very weepy, and when he asked me if we could “put Mum to sleep because I can’t bare to see her suffer any more” I knew I had to do something drastic, so I made the decision to start sleeping at my parents’ house. The plan was that I would come here around 6pm each evening, sleep over and go back home around 10am the next morning to rest up, with the Carers coming at lunchtime and once in the afternoon. It hasn’t actually worked like that yet because the past few days have been absolutely manic, but I live in hope! So I am typing this from a small double bed in a cramped single bedroom at my parents’ apartment, while my Dad sleeps on a single bed in the lounge and my Mum is spark out in her hospital bed in the largest bedroom as she needs space for the Carers.

All that sounds dead simple doesn’t it? But we’ve had to be assessed by the District Nurse for the hospital bed and have that delivered and me shown how to use it. I’ve had to move the single bed from the small bedroom to the lounge and get that made up, alongside a chest of drawers for my Dad to use. But in order to put the bed in the lounge, my brother and I had to move the sofa from the lounge into the big bedroom (fucking nightmare as the hallway in the apartment is very narrow and we really struggled to get it through the bedroom door). I then also had to move the double bed from the big bedroom to the small bedroom for me to set up camp, which included bringing a bedside table from home, plus a lamp and over-the-bed table and a trip to B&Q for a 10m aerial cable so’s I could watch TV in bed. In addition, I’ve only just got on top of my year long pelvic pain by having a new mattress on my bed at home, only to then sleep on my Dad’s mattress which is like a block of sodding concrete. So after night number 1, and without even asking my Dad, I went online with his credit card and ordered an Emma mattress for the bed I’m sleeping in which thankfully came on Tuesday! I then had to get the old double mattress off, drag it down a flight of stairs and onto the front lawn to be collected by the Council, unbox the new mattress and re-make the bed.

I then had to organise care for my dog. Ordinarily, I pay a nice lady to walk him at 9am each morning but I was no longer home. So my Dad is going to walk him at 9am (as an added bonus it gets him out of the house for a break) and when I’m home during the day the nice lady will take him out in the afternoon instead. I then had to bring his dog blanket, and pet steps, medication and food to my parents’ house.

And, last but not least, all my own gear had to be brought to my new pad – changes of underwear, toiletries, medication, bedding (including my support pillows), phone charger, laptop and all the other gubbins we need every day of our lives.

All this and I hadn’t even started caring for my Mum yet 😕.

She now has a severe tremor all over her body and can no longer feed herself, so the tiny amount of food she is managing to eat has to be cut up and fed to her. She can just about manage to have a drink herself using a two handled sippy cup, but she only had one so I went to the mobility shop in town for a second one. But the first time we used it the lid dropped off and the liquid went all down my Mum, so at some stage when I have the time I’ll need to take it back. So then I went on Amazon and ordered some more like the one she already has, which arrived yesterday (along with a new pair of extra wide slippers due to the fact her feet have swollen, and two new pairs of pyjamas which were a mare to find as she gets cold easily so I wanted brushed cotton with long sleeves……..in Spring!).

The next thing I needed to organize was a baby monitor. The whole point of me sleeping at my parents’ house was to give my Dad a break from getting up in the night if my Mum needed him, so I wanted to make sure that Mum didn’t shout for my Dad and wake him. So I went on the Argos website and found what I needed……..and it was out of bloody stock. Back to Amazon (that website is a total life saver!) and next day delivery and my baby monitor arrived. I used it for the first time last night and it was great. I was woken at midnight by a loud crash, which turned out to be Mum putting her sippy cup back on the night-stand and knocking off the TV remote. It was a blessing, though, as she’d been asleep since 7pm and hadn’t taken her bed-time medication, so we did that while I was up. She then woke me at 6am asking for the loo, but my Dad wasn’t woken once so got a good night’s sleep for the first time in days. I, OTOH, am knackered 😕. She did tell me off though this morning though, saying she’d been shouting me for ages and “that monitor thingy isn’t working”, so I had to explain that actually I was sound asleep and it might take a bit to wake me!

I was bedridden for a decade myself so have some insight as to what it’s like to be incredibly weak and have limited mobility, yet I was still unprepared for my Mum’s situation. Her lack of ability to do anything is a huge shock and a massive learning curve. She can’t stand unaided, so yesterday we were assessed by the Care company manager and an Occupational Therapist, and today we have had 2 hoists delivered – one to get her in and out of bed and the second in the lounge to get her off her recliner chair and onto the commode when she needs the loo. Which is much more complex than it sounds. For a start, how do you pull someone’s pants down when they can’t stand up? We have a toilet sling for the hoist, but I used it for the first time today and still couldn’t manage to get Mum’s pants down! Mum is also scared of the hoist dropping her (even though it won’t), so is very anxious and panicky. It’s going to take us a while to get used to it.

She can’t move in bed, so last week we had an electric hospital bed delivered. But Mum still can’t sit herself up in bed as she can’t seem to grasp how to use the controls (despite them being almost identical to her recliner chair controls).

Along with the hoist today, we also had slide sheets delivered so that we can move her up and down in bed if needed. Again, I had to be shown how to use those, told how to wash them and how to make up the bed.

Next to arrive today was the District Nurse, who has arranged for a pressure cushion for my Mum’s recliner chair as she is showing signs of a sore on her bum. She’s also getting us some more barrier cream and some incontinence pads to be worn during the night. And in amongst everything, for some bizarre reason my Dad had told his sister to “pop by” for a visit, so she was parked in the lounge chatting to my Dad while I was in the lounge chatting to the OT and nurse and being shown how to use the hoist!!

In between the Care centre manager, OT, District Nurse, making tea and passing round biscuits to my Auntie, the equipment delivery and regular carers today, I also had to drive 40 miles to the Hospital and back to have an ultrasound scan on the lump inside my elbow which thankfully turned out just to be a fatty tumour. I parked in the disabled bay, put my blue time disc up with the correct time on, came back from my appointment……….and had a fucking parking ticket. Although I’d put the blue disc up, I’d forgotten in my stressed and exhausted state to put my actual blue badge up. It was all too much and I stood in the car park and burst into tears. Which I probably needed, but driving the 20 miles home with my eyes and nose streaming was tricky. I called in at Morrisons for a prescription for laxatives for my Mum and hurriedly bought a scone for myself to have for my lunch.

I’ve had to start informing relatives that Mum is “very poorly”. I never really know what to say. I have no clue if Mum’s death is imminent, or whether she might last another 6 months (despite all the chaos and comings and goings today, she’s actually been quite bright and with it!). First on the list was my brother, who lives 200 miles away. We haven’t spoken to, or seen, each other since 1989 (long story) but I’m now having to speak to him every day to update him on Mum’s condition – which is beyond weird/uncomfortable. I also had to ring her brothers in Australia.

I finally managed to get myself some dinner at 8.20pm tonight and am now so exhausted I don’t know what to do with myself. I just pray Mum doesn’t wake me too much tonight because I desperately need a proper kip. I know that, due to my M.E., I simply cannot keep up this level of activity. My hope is that now all the equipment etc. is in place things will settle down a bit and we’ll get into a routine.

It’s a huge amount of work and stress. My Dad is feeling it. I’m feeling it. My Mum is feeling it. Even my poor, elderly, totally bewildered dog is feeling it. Why don’t we talk about this stuff?! The practicalities of looking after someone at the end of their life need to be addressed, so that families are more educated and better prepared. I currently feel like I’ve been hit by a freight train with everything that’s happened in the past month – how anyone does this stuff if they have children at home and/or a full time job is mind blowing.

It’s now Thursday. It’s taken me 3 days to write this post as I either fall asleep or am interrupted and needed for some task or other. I was up at 5am, as Mum had tried to get herself out of bed and was stuck. It’s totally ingrained in our psyche to want to get up to use the bathroom and her brain simply won’t let her wee in her pad in bed – which I totally get. She’s now settled, my dog is fed, has been let out for a pee and is now back asleep on the bed, and I’ve had a brew and it’s not yet 7am. And so another day begins…………..

Weekly roundup

Quite a bit of doom and gloom in this post, so if you’re feeling emotionally fragile you might want to skip it.

My Mum is clearly in the final stage of her life. She has slowly been going off her legs the past few weeks, not helped by the fact she has almost stopped eating. She is ready to die and I have asked her brothers and sisters to come for her as soon as they can. She’s never been the same since both her best friend then her oldest sister passed away and when her beloved youngest brother died suddenly of a heart attack 2 years ago I think she emotionally died with him.

Life becomes extremely lonely when your friends and family die before you. Initially I was angry at her for moping – after all, she still has my Dad and me, not to mention my brother and her 3 grand-children. But then I realized you can’t replace people of your own age and generation. She misses talking to her two best friends and her sisters and I fully understand that. Talking to your bestie is therapy and you can discuss things with them you would never dream of talking to anyone else about.

I’ve no idea how long her death will take – weeks, months? My Dad is at the end of his tether physically.

We are lucky, though. My sister-in-law is the manager of a home care company and we can have as much support as we ask for. She went down yesterday to help my Dad so that I could have a day off, as I was feeling utterly exhausted and overwhelmed. I asked 4 of my neighbours round for lunch and it was a tonic to sit outside in the sunshine and to have a laugh and talk about things other than illness.

We also have the NHS, which I frequently knock but has been a god-send. We ask for equipment such as a commode or a hospital bed and it appears within days. The community nurses have also been great, coming at an hour’s notice and ringing me as late as 9pm at night to fill me in on what they’ve done for Mum.

Anything else we need my parents have the money to buy, which this week has included new slippers, new pyjamas and 3 new two handled sippy cups with lids. We are very fortunate to be in this position.

The situation is, nevertheless, hugely stressful. Yesterday I was rung by 4 different people/agencies despite it being my one full “day off” in over a year of taking care of my parents through the pandemic. The last call was from my sister-in-law at 9.30pm last night, which left me really wound up and unable to sleep. It’s a lot to deal with when I am sick myself. While I am ‘there’ for everyone else I am physically on my own – no cuddles for me at the end of the day or a cup of tea brought to me in bed.

So I am trying to self care as much as possible, knowing that if I don’t have some down time I will implode and be no good to anybody. But the guilt is enormous. Despite knowing my parents were in good hands yesterday with my sister-in-law, I felt sooo guilty at having a nice lunch with some friends. I know it’s irrational, but when it comes to something so primal as taking care of your dying parent rationale has nothing to do with it.

So that’s where we are. No matter how prepared you feel you are, and I do feel prepared, this is the single most important event of my life and one which will change me forever as a person.

In a weird way, I feel less alone due to the pandemic. Over 3 million people around the world have lost a loved one in the past year due to Covid and often in circumstances far more traumatic than the one I am facing. We are intending to keep Mum at home and she will die with my Dad and I at her side. At the end of the day, to die in your own bed surrounded by your family is all most of us want.

Until next week lovely friends, stay safe x

hEDS Update April 2021

I’ve been promising to do an update on my Ehlers-Danlos Syndrome for ages now, but to be honest I’m finding it difficult to know where to start! I was diagnosed with hEDS at the age of 42 by a rheumatologist who specializes in hypermobility disorders after having my pain and other issues ignored and fobbed off for decades. Eventually, Dr Google and I had a strong suspicion that faulty collagen was behind my lifelong symptoms and this was confirmed in 2010, much to my relief. You can read more about my hEDS journey in this post.

As a child I had the following red flags:

Easy bruising
  • Widespread joint hypermobility.
  • Constipation.
  • Easy bruising.
  • Thin skin which split easily and left wide scars.
  • Fatigue on walking or standing for long periods.
  • “Knock knees” (which are caused by collapsing high foot arches on standing).
  • Inability to run long distances, which affected my lungs.
  • Hand pain and fatigue when writing.

As a teenager, these were joined by:

Widened, atrophic, cigarette paper scar from spinal surgery
  • Spinal surgery for rare congenital spinal stenosis (ie narrowing of the spinal canal).
  • Lordosis (ie an exaggerated curve in my mid back).
  • Mild scoliosis (ie my whole spine curves to one side).
  • Dental overcrowding (I needed 4 molars extracted to make room for the rest of my teeth).
  • Daily headaches.
  • Chronic nausea.
  • Poor proprioception.

In my late thirties, the pain in my back became severe and my mast cell disease, which had lurked in the background all my life, began to escalate.

Then in my forties all hell seemed to break loose:

Thickened skin
  • Mast cell disease and a newly developed Histamine Intolerance threatened to kill me.
  • Subluxing joints (ie joints which partially dislocated but eventually pop back in on their own or with self-manipulation) which particularly affected my ribs, fingers and jaw.
  • Loss of hypermobility, particularly in my back. I also had severe ankle stiffness in the mornings, which made walking difficult. I am now very stiff all over.
  • Headaches went, to be replaced by horrendously painful migraines both with and without aura.
  • Severe, widespread, unrelenting pain.
  • Severe eye floaters and very dry, sore eyes.
  • Thick patches of skin over bony joints such as my knees and elbows, which can be discoloured.
  • Severe, drug resistant GERD (ie acid reflux).
  • Fatigue.
  • Muscle weakness.
  • The only way I could sleep was on my side propped up front and back with pillows, otherwise pain kept me awake.

It was the fact that my pain levels increased substantially and I started subluxing my ribs in my early forties as I entered peri-menopause which led to me seeking a diagnosis. It is still clinically “anecdotal” that hormones play a significant factor in hEDS for women, but you only have to go on any hEDS forum to know that there is nothing “anecdotal” about the fact that both puberty and menopause play havoc with collagen and many women don’t even know they have hEDS until they hit their forties and the pain and dislocations begin.

I have to be honest and say the entire decade of my forties was a hugely difficult time health-wise. My mast cell disease made itself known in no uncertain terms and my hEDS hugely impacted my daily life. Add to that all the other symptoms of peri-menopause and it was not fun. Not fun at all.

In my late forties, I volunteered to take part in the Hedge research study but apparently didn’t fit the new 2017 EDS diagnostic criteria. Instead I was given the diagnosis of historic Hypermobility Spectrum Disorder. Ignored totally was my rare congenitial spinal stenosis, heart murmur, blue sclera, pizogenic foot papules (I didn’t have enough apparently), atrophic back scar (you need 2 scars for diagnosis – WTF?!), mast cell disease, my brother’s Marfans stature and the fact that his professional football career was cut short due to collagen issues with his knees, and my Mum’s history of spontaneous pneumothorax aged 42 (ie collapsed lung for no reason), pectus carinatum (ie pigeon chest which is strongly associated with genetic connective tissue disorders), mast cell disease and obvious hypermobility. If it looks like a duck and quacks like a duck chances are it’s a god-damn duck and I strongly think that the new criteria for hEDS is flawed and excludes many EDS patients.

I am now 53 and approaching menopause, and my symptoms are changing once more:

  • Stiffness is now very limiting. I struggle to put on my shoes, cut my toe nails, raise my arms above my head to wash my hair or look over my shoulder to reverse the car.
  • I stopped being able to lie on my front when I was about 43, but I now can’t lie on my back either as it’s just too painful.
  • If I sit in certain positions, particularly if my head is leaning backwards, I start to feel…….weird. Hard to explain, but like I’m going to pass out or have a seizure. I’m assuming the weak collagen in my neck is causing some kind of spinal collapse and/or compression.
  • For a year now I’ve had intractable pelvic pain and have to sleep wearing an SI belt every night. Despite that, many nights I’m woken by pain. It’s come to something when you can’t sleep on your front, back or either side and at times I’ve had to resort to sleeping sitting up.
  • Fatigue is ridiculous.

However, there have also been some positives to my hormones finally vamoosing, including:

  • Subluxations seem to have settled down. However this may be due to the fact that I simply no longer do anything, because I can’t cope with the resulting pain from activity.
  • My migraines seems to be much less frequent, although when they do appear they are fairly brutal and last for several days (I’m currently on day 4 of a stonker!).
  • Treating my mast cell disease and Histamine Intolerance through a low histamine diet has seen an end to my lifelong constipation 😮. Ditto my chronic nausea and it’s now very rare I ever feel sick, after suffering almost daily for forty years.

I think it’s a combination of declining hormones, having the aids, supports and adaptations I need for daily living, and tailoring my activity to my symptoms which have helped my hEDS to stabilize albeit I’m at a fairly low level of functioning. It’s now rare I need to wear my Oval 8 finger splits or my back brace, but that is clearly helped by the fact that I simply don’t do much physical activity any more because if I do I can’t stand the resulting pain. I also use my braces judiciously, for example when I’m editing my photos I always wear my wrist brace as I know if I don’t my right wrist will kill me from using my pen tablet, and I also use a neck brace because sitting still for long periods gazing at my monitor sends my neck into really painful spasms. Getting the right orthotic insoles for my shoes has helped my knee pain, although it did take 2 years and several types before I found ones which suited me (I even had some custom made and they were the worst by far!). Using a push button kettle helped my wrist pain and of course using my mobility scooter has helped with both fatigue and pain and enables me to get out and about without too many negative consequences. Ditto my automatic car.

I was tortured for a whole year in 2020 by dreadful back and neck pain, which I thought was menopause related but which turned out to be more down to my twenty year old mattress and soft pillow. Changing the mattress and pillow on my bed to more supportive memory foam helped enormously, so it’s always worth looking at potential other reasons for new or increased symptoms!

So, that’s where I’m at. hEDS now has a big impact on my every day life and I definitely feel old before my time. It’s bizarre to go from being hypermobile your whole life to suddenly being painfully stiff and inflexible and it’s seriously taking some getting used to. However, so far I’ve found ways of working around my limitations although I mourn being able to sleep in my usual position, or sitting crossed legged which has always been super comfortable even at the dinner table! Only time will tell what the future holds.

Weekly roundup

I’m not gonna lie, this week has been beyond stressful and exhausting but as I’ve already vented about that in this post you’ll be delighted to know I’m not going to dwell (I can hear the cheers of relief from here 😁).

Yesterday I saw my bestie in person for the first time since last summer. We are now allowed to meet up to 6 people outdoors, and as it will soon be said bestie’s birthday I drove the 35 miles to her house with her gift. The weather forecast had said it was going to be 11C and cloudy, so I’d put my thermal vest on and taken my electrically heated throw with me expecting to freeze my wotsits off, but the Met Office lied through their teeth. It was so hot I burned my chest and feet, and went to bed last night stinking of aloe vera and Germolene. To sit outdoors in the sun after 6 months of freezing winter, listening to the birds singing and having girlie chat while eating ice cream was nothing short of heavenly, though, and worth every second of looking like an over-boiled lobster 😆.

Thursday was also sunny and I met up with a photography friend for tea and cake by a local river. I was being treated because we were celebrating one of the biggest achievements of my photography journey to date! Over Christmas I tried something new and produced my first ever series of pictures, which I tentatively entered in massive global competitions, not expecting to get anywhere as I was competing against the best photographers on the planet. And for months I did just that – got absolutely no-where – so no-one was more surprised than me when this week I received an email to say I had been awarded in one of the world’s largest fine art competitions. 😮 and double 😮. It means so much for my images to be recognised in my chosen speciality and in a competition which specifically rewards innovation and creativity in photography. To say I am tickled pink is the under-statement of the year!

I’ve really missed my photography this year. I just haven’t had the time or energy to create anything new, but I’m hoping when we get the situation with my Mum more under control that things will calm down in the next couple of weeks and I can get back to doing that which I love. I also must do some laundry 😁.

Right lovely people, I need to get up and take the hound out on his jollies so I will love you and leave you. Until next week, take care and stay safe x

Just another week

I ring my parents every day at 9am and every day there is a new crisis. When I rang on Sunday morning I was told that in the middle of the night Mum had woken my Dad for him to take her to the loo, where she promptly fell while trying to get back up off the toilet. When someone can’t use their own legs as leverage you have no idea how heavy they are and I have no clue how my Dad even managed to get her back up and into the wheelchair. It was now obvious that we needed to do something about the toilet situation.

So on Monday I arranged for the Occupational Therapist to visit to help us. She turned out to be as much use as a chocolate fucking fire guard and spent the entire visit sweating like a stuck pig (loose some weight, then maybe you won’t be so goddamn hot!), coughing and asking me what equipment we needed. Isn’t that YOUR FUCKING JOB?!

The Carers (who have been brilliant) had told me to ask for a wheelie commode, which is the only thing the OT arranged for us. I picked it up yesterday and it meant that we could put it by Mum’s bed during the night in case she needed the loo.

But when I rang my parents today my Dad told me with weary sarcasm that they’d had a fun morning. Mum then came on the phone to explain that she’d needed a poop in the night, so had gotten onto the commode next to the bed. Super. Why, then, had shit ended up absolutely everywhere? That would be because my Mum hadn’t pulled her pyjamas or knickers down first ☹. So she’d pooped in them, then gotten back into bed.

At 7.30am she’d woken my Dad up who had then had to start cleaning everything, washing my Mum and putting her in clean pjs and stripping the bed. After waiting all night, why the fuck could she not wait another 20 minutes until the Carer came instead of making my 81 year old, just woken and ill himself Dad do it? I know why. She was ashamed and didn’t want the Carer to see what she’d done. Which I understand, but if she doesn’t stop making my Dad do everything he will have a nervous breakdown.

I asked her yesterday when I brought the commode home who was going to empty it.
“Oh, your Dad’ll do it” she said.
“No he bloody well will not” I tell her firmly. “The Carers come 3 times a day and you will ask them to do it”. But I know she won’t.

This incident is the end of a long list this past 10 days. Mum has now almost totally gone off her legs and can no longer walk herself to the bathroom. She has to be heaved out of the chair, put on the wheelchair, wheeled to the bathroom, heaved back up and onto the loo, her bum wiped, heaved back up into the wheelchair, wheeled back to the lounge and heaved back up and into her chair. My Dad sometimes does this 6 or 7 times a day and just recently twice during the night as well.

Carers were already coming in each lunchtime to make a meal and put Mum in clean underwear, but I’ve now arranged for them to come at 8am to get Mum up and at 10pm to put her to bed. However, Mum only has a small single bedroom and we couldn’t get the wheelchair in, so last week I simply took the bedroom door off. I asked if she wanted a curtain putting up instead but she said she wasn’t bothered. The bathroom door also opens the wrong way and you have to walk around it to get to the loo, so tomorrow I have a joiner coming to swap it round but that means it then opens onto the radiator which will also have to be moved, so the sparky is coming along with.

On Friday I arranged for the District Nurse to visit to do a skin check. Mum has really thin skin due to her hEDS and age and I was worried about some sores I’d seen. The nurse left a prescription for some barrier cream which I then had to go to Morrisons to collect, as well as arranging some pads for her to wear at night (which, to be fair, she did have on last night but they are not designed for poop).

I also sent for 2 large rails to go either side of Mum’s electric riser recliner chair, so that when we raise the seat to help her stand she can hold onto the rails and doesn’t tip forward (they’re actually bed rails but I’ve got them to work fine with the chair). Both the nurse and OT were impressed with them and asked me where I’d bought them. Er, shouldn’t they be telling me about the best equipment for my Mother?!

Mum now can’t raise herself up in bed, so is lying flat on her back for nearly 12 hours each night. She also isn’t sleeping well, so I’ve arranged to put a TV in her room (I’m giving her mine from the kitchen for now) and I’m investigating electric beds. I have asked the District Nurse for a hospital bed on the NHS but it could take months of bureaucracy and form filing to get one so it’s just easier to buy a bed myself. That way, it will look nice and we can have it custom made to Mum’s exact height requirements. It’s just another thing to add to my list of ever expanding ‘things to do’.

Mum has Raynaud’s phenomena and her hands and feet are always freezing cold. So I’ve also sent off to M&S for some new thermal socks and to Amazon for a small electric heat pad (you can knock Amazon all you like, but I have absolutely no idea what I’d do without it!), on top of nipping to Sainsburys for her some new pyjamas and more knickers now that she sometimes goes through 2 or 3 pairs in a day. I also arranged for the chiropodist to visit as neither parent has had their toe nails cut in over 4 months due to lockdown (I’ve tried my best, but even using dog nail clippers my Dad’s toe nails are so thick I couldn’t cut them and he now can barely get his shoes on).

Add to all this the ongoing paperwork for the court case against TalkTalk and all the usual running of a home (meter reading, weekly shopping, preparing menus for the carers, putting up Mum’s ever changing medications each week etc. etc. etc.) and it’s a lot too much.

My own home has been totally abandoned. I have now had the smell of sewage coming into my utility room for nearly 3 weeks and I simply do not have the energy to really tackle the problem. The lounge carpet hasn’t been hoovered in weeks, Bertie’s snot is all over the window and there is just crap everywhere (it doesn’t help that I can’t hang my newly laundered clothes up in the utility room to dry because they would end up smelling of shit so they are consequently on every radiator in the house). For someone who loves tidiness and to be clean it’s stressing me out no end. Then there’s the fact I didn’t manage a shower for 5 days last week as I didn’t have the energy, and went 11 hours yesterday with only a custard slice and a cup of tea to eat. Monday night I got in at 6.50pm. Tuesday it was 5.50pm. And yesterday it was 6pm. I usually go to bed each day at 4pm and simply can’t keep this up.

My Dad is really really tetchy and to be fair so am I. I’m starting to be snappy and am wondering where my own life has gone (I haven’t attended my camera club for nearly 3 weeks and haven’t done any photography since 2020). Everyone tells me to “look after myself, because I’m no good to anyone otherwise” but it’s a platitude to make them feel like they care. None of them have popped round with a casserole or offered to walk my dog to give me a break, so I’m not fooling myself that any of them actually give a crap. In any event, which part of the above this week should I not have done, exactly, so that I could have a rest? Which part is my Dad not supposed to do so that he can have a rest?! I am involving every agency I can think of, but they stay for half an hour then leave and it’s the family who have to just get on with daily living. Not a single professional has asked how either my Dad or I are coping or mentioned a carer’s assessment even though we are legally entitled to one – it’s a fucking disgrace when my Dad is so elderly and I am disabled and chronically ill.

My brother does his best, but he works 12 hour shifts then has to come home and have his tea and it’s not like my parents want him visiting at 8.30pm at night. His wife, who works for the care agency, has been a treasure in respect to the Carers but again works full time and also has elderly parents of her own. You have no idea what’s involved until you’re in the situation yourself and I am juggling so many balls in the air I don’t know whether I’m coming or going. There is no discussion whatsoever of the fact that I am also ill and coping with the menopause on top of everything going on with my Mum and, unlike my parents, I have zero help.

It’s just another week in the life of a Carer but I swear I had no idea it was going to be this exhausting or stressful and I’m not sure how much longer I can keep it up.