One Year Later…

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Last weekend we passed the first anniversary of the Motherships final flight. It’s hard to believe that a year has passed already. A lot has changed , but in some ways nothing has changed, because despite how it feels at the time, life does carry on.

I was going to write about it, and then I didn’t. I started a post, but the words just wouldn’t come. I knew what I wanted to say, but I was having a hard time making my thoughts legible and then a few days passed and the momentum was lost.

I’m not sure if the first anniversary of someone’s death should be a thing. To me it didn’t feel any different, because I miss her everyday. Lately though, she has been on my mind a lot.

No one tells you how you should grieve, but then again, why would they, it’s a unique and personal experience. Even now I find it hard to write about, not from the point of view that I find it difficult to talk about, but because I still don’t think I understand everything that happened.

The experience of caring for someone with dementia was so intense that when it stopped it was a shock. I used to liken my life to going home every night and being placed into a pressure cooker. It was almost like life outside didn’t exist because everything was so focused and intense. But when it stopped I felt useless, like I had no purpose any more. I had become so used to the routines and pressure I needed time to adjust.

People often say when a loved one passes that they wish they could see them again, just for one last time. Personally, I wouldn’t want that, not if she was going to be the way that she was. I do wish however that she could let me know that she is ok, hopefully at peace.

Time is a great healer and with it all the bad memories slowly become replaced. The words and memories of others become intertwined with my own and bring things long forgotten back to life, reminding me of the person my Mum was before the dementia.

I’ve healing of my own to do, those four years left me with my own scars, but I’m taking it one day at a time.

I wasn’t going to write about it, but I am glad that I did.

I always want to be able to remember.

 

Happy New Year

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Most years I try to write something as one year passes into another and this year should be no different. It’s not that I am bitter or anything, but I certainly won’t be sad to see the back end of 2016.

This won’t be a long post as sadly tonight finds me suffering from some kind of bug or other, my second dose within the last month, which leaves me unable to stay upright for long periods of time. Certainly not the fresh start I hoped for 2017, but I’d be grateful to be proved wrong.

2016 was certainly a year of many ups and downs, not only in the world in general but also in my personal life. It wasn’t all bad, I finally made steps towards getting counselling which can only be a good thing, for my mental well being anyway. It was however the year we lost the Mothership after her battle with dementia. There is no doubt things are different, in fact sometimes it still does not feel real, but we just have to adjust and get on with things as best we can in the hope that each day gets easier. She certainly wouldn’t want me moping, so I need to give myself a good kick up the arse when I do. I hope the saying about time being a great healer is true.

In terms of blogging I have pretty much been absent this year, the first half being dominated by looking after Mum and then since November grieving for her, I wasn’t in the right head space to put very many words to paper. I’m not even going to promise that I will improve next year, I’m just going to go with the flow and see what happens.

So let me wish you all a Happy New Year and here’s to 2017, let’s hope it’s better :)

The Motherships Final Flight

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I have no idea how I am supposed to tackle a post like this, but I know I have been trying to for the last 7 days or more.

Perhaps I was scared that writing about it would make me actually have to face up to what I know deep down is true.

My Mum passed away. She’s gone. Not just out of the house any more, but gone forever.

People keep asking me how I feel and I am not sure what my answer is supposed to be, because I have no idea how I feel. No one gives you a handbook.

My life for so long was looking after my Mum, watching her decline and wondering what was going on in her head. As someone pointed out, we managed to look after her for as long as we could and this resulted in her only being away from the house for just over 2 months. I hope we did right by her and that now she understands we did the best we could.

There was never going to be a vast improvement, her refusal to eat and drink was worrying for all concerned, family and Doctors alike, but I never expected she was going to die, well not so soon anyway. There were moments of uncertainty when she contracted Aspiration Pneumonia, she looked so frail and her breathing sounded painful, but she still kinda bounced from day to day.

Last week, reports had been better, people were a little happier after their visits. She was in good enough spirits, chittering away and even recognised some people. On Wednesday we got the phonecall, the one that even though I never expected it, I dreaded. We were asked to come to the hospital, things didn’t look good.

The Doctor told us that after she had become unresponsive they had sent her for a brain scan which had revealed she had suffered another bleed, this one significant and sadly untreatable. All that was left now was to make her comfortable and wait.

We sat around her bed. We cried, we laughed while sharing stories and we waited.

Thankfully for both us and her, we did not have to wait too long. After she stopped breathing the first time, my Dad spoke to her, my Sister prayed for her and I sang to her, my Aunt and Uncle close by until a few minutes later she just slipped away in her sleep.

People tell me she is in a better place, whole again and happy. I have to believe that too, because it’s what is going to get me through each day. This ending, although sad, was better for her.

It’s hard to sum up someone’s life in words, but our Minister managed to do it perfectly, telling the 400 strong crowd how much of a character she was. There were nods of agreement, as each person no doubt remembered their own encounters with this wee woman who was so many things to so many people. A Wife, a daughter, a Mother, a friend, a nurse or even just a stranger who offered smiles and hugs without expecting anything in return.

She may have been small in stature, but she leaves a big void.

Rest in peace Mum, I love you x

Keep Breathing…

I’ll start this post tonight, but it is unlikely I will finish. It’s 23.16 and I really should be in bed, but as usual I am not. I’m tried, emotional exhaustion as opposed to physical exhaustion, although it’s there too.

I’m listening, and I can’t hear anything and it’s a blessing, it means all is peaceful, something that in this household has been severely lacking of late. There is no shouting, crying, cursing or stamping of feet. The Mothership is in respite and I can breathe.

A few weeks back a routine glucose check promoted an urgent trip to the hospital, where it was discovered that she has iron deficiency anaemia. They don’t know the reason and because of her level of understanding are not sure they can complete the necessary examinations. 9 hours we waited while she was topped up with both blood and iron. We hoped that perhaps that had been the reason for the decline in mood, but we were wrong and things steadily got worse.

The Fathership contacted her social worker and when she eventually returned his call a visit was arranged. They discussed carers, incontinence clinics, day care centres and medications. There was no discussion about what you do when you feel you’re at the end of your rope and have no strength left to tie a knot and hang on.

We persevered for another couple of weeks, but there was no improvement and neither of us could remember the last time there had actually been a good day. Her new favourite word became no, which she said a lot when we were trying to get her to eat and drink, a vital part of staying alive.

I’ve cried so much this last 2 – 3 months, because there really is nothing else to do when you feel there is no where else to turn. You look at the person before you and in your head you check off all the tactics that you have tried to stop the shouting and crying, and when you realise that you’ve actually reached the end of your list you think how, how the fuck am I going to deal with this person.

In sheer desperation the Fathership contacted her Doctor and outlined everything that had been going on, the lack of eating and drinking and the increase in the aggression and she took the decision to have her placed into respite for a couple of weeks in order that she could be assessed to see if perhaps there were any other underlying reasons for the decline.

I cannot explain the weight that has been lifted off our shoulders even if it is for a short time. How delighted I was to be able to sit down and watch the TV or sleep all through the night, something that I had not been able to do in the last 2 months.

It’s not been the stress free week that I hoped however, one set of worries just becomes replaced by new ones, like how is she getting on, will she kick off with the staff, will she fret for home and also, will she hate us for placing her in there in the first place. There are still things to be done, certainly a lot around the house and lets face it the cooking and cleaning never stops. I badly need to catch up on sleep, because the world is a scary place when you are suffering from a lack of it.

She’s been in for almost a week and I have not yet been to see her. I’m not sure people understand my reasoning, but in order for me to make the most of this time I have been given I need to try and distance myself, because if I go to visit and she is either upset or accusatory then it is going to take away any of the benefit that this period of peace should have.

Others have reported that she is doing well. albeit she will not eat and drink more than the minimum for the nurses either. She seems to like the company and to be honest that was a fear of mine for the last few weeks, that she was lacking the interaction with people other than myself and the Fathership.

We have big decisions to make, but I think we all know that the time is coming when we will have to choose where the best place for her to be is. We can’t seem to make her happy any more and if she needs that connection with others then perhaps she needs to be where that can be provided.

I’m trying to take one day at a time, but already thoughts of her return home are crowding my head, because when you have had that little bit of freedom and realise what life can be like, you realise it’s going to be very hard to return to how things were.

One day at a time eejit, one day at a time. Keep breathing.

(As predicted, this post took me 4 days to complete)

Remember Me!

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I sort of feel like I need to provide an explanation with regards to my absence, when in reality I probably don’t. Even I was caught a little off guard this time when WordPress informed me it had been 23 days since my last post. I’d love to tell you I have been having a whale of a time, but why sugar coat it, things have been pretty shit to be honest, there is just no any other way to say it.

This whole Dementia thing is proving really stressful. We’ve had the worst month ever due to tantrums, constant crying, hospital visits, in fact you name it and we’ve probably dealt with it.

It’s becoming apparent that 9 out of 10 times I am the only person on the Motherships radar meaning she will essentially ignore everyone else and come to me for assistance. It’s like having a shadow and it’s exhausting. She leaves me with virtually no free time at all until I eventually put her to bed. I wanted to write last night but I was so tired I was unable to string a sentence together.

So that’s where I have been, every night I come home from work and step into the cocoon of caring that is so intense it almost makes you forget there is a world outside. Returning to work on a Monday after a weekend spent here feels like I’ve been away for a month, not two days and I am less than rested. As much as I dread work sometimes, I am glad of the escape.

Things are happening though, there is talk of Carers coming in to assist and a mild tablet that will hopefully bring calm, but we are doubtful it will make any difference and we certainly cannot tell the Mothership for fear of a reaction of explosive proportions. We will just have to wait and see. My Sister has been down every weekend which has been great and taken the pressure off.

But still, I am living on my nerves, and they are frazzled!

Apart from that there is nothing, not a fecking thing can I tell you that will in anyway entertain or amuse you. I just wanted to update you.

I read when I can and comment when I can, but less than perfect WiFi on my train journeys is a bit of a hindrance. Just know I am still alive and well and usually around somewhere :)

SSDD but that’s life!

Yet again it’s hard to believe it’s been almost three weeks since I sat down to write. As usual, it’s not because I didn’t want to,  I think about writing all the time, it just never happens.

Last week I had this crazy idea that I was going to carry my lap top to work with me, take a half day  and spend the afternoon somewhere in the city with a cup of coffee while leeching free WiFi off the person who provided it, blogging away to my hearts content about all that was going on around me. It never happened, there are usually conflicting interests these days, something always needs done that is slightly more important than anything else.

I’ve been struggling lately, home life has been.. I dunno actually, how do I describe it, well lets just say things are not getting any better. There is just no escape from it, hence the reason behind my wish for an impromptu afternoon. Every day I lose a little bit more of my free time, I’ll only have just sat down  before the Mothership comes a knocking, which makes me want to knock my head repeatedly against a wall. The worst bit is that lately she has been more vocal, so when she’s shouting at me that I do nothing for her while sucking up my free time, well you get the drift right, there is only so much counting to ten a sane person can do. It’s exhausting.

Work has been hectic, relentless sometimes, but yesterday was the first time I’ve worked a weekend in a while and even then I only worked for half a day. I don’t want to be in the position where I have too much time again.

I need to stop getting so stressed out about simple things, I feel like such a second rate citizen sometimes, like I am lagging behind, even though everyone tells me that is not the case. Lack of sleep honestly has a lot to answer for, it makes everything seem worse than it actually is. Last night I was so tired I got into bed at 8.30pm and set my alarm for 30 mins just so I could have a nap to tide me over till the Mothership came up for the bedtime routine. At one point in the midst of all the shouting when she finally did come up, I was begging her just to go to bed because I was so tired. By the time I eventually got everything sorted I was wide awake again, go figure. Yet without fail I’ll be woken at 7am the next morning with her screaming because shock feckin horror the Fathership is trying to wash her hands.

There have however been little glimmers of the good stuff in the middle of the mire. I’ve got Spotify premium, well I have it for 3 months anyway owing to the fact that it was on offer at 99p! I know fine well that I am going to be gutted when the trial runs out, but I’m not sure I can justify spending £9.99 a month. So if you have any chilled out music you think I might like then please let me know, I am always looking for additions to my Songs for Writing playlist.

I also had to get a new mobile phone which meant going back onto a contract. Mine was working not too bad, the only problem was it had completely run out of internal memory, even with all the non essential apps removed. So far so good the new one is much better, and ladies believe me, that extra half inch makes all the difference…..screen size ya dirty buggers! I do however miss my little notification light, there is no more blinking when someone from the outside world tries to contact me, instead I have to touch the phone but hey ho, I’ll get used to it.

It’s good  to be back, I’ve missed you guys :)

~

*SSDD – same shit, different day :)

It’s going to be one of those days…

 

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No matter how tired I am this weather I can never seem to get enough sleep. Granted, part of that is my own fault, I’m a bit of a night owl, but when I have the opportunity to sleep a little longer in the mornings it never happens and it’s extremely frustrating!

So here I sit with a banging headache, the next door neighbours dog is having a noisy showdown with the cockerel, as in one is chasing the shadows of birds and the other is trying to call for them. There is housework to be done and people to be fed and I just can’t be arsed doing any of it, no point in sugar coating how I feel, lack of sleep clearly makes me a cow.

I’ve missed not writing and reading blogs, but there has just been no time. It’s something I am going to have to rectify, because honestly, sometimes in the middle of everything that goes on I think it is the only thing that keeps me sane.

This last couple of weeks have been challenging, and it’s a stark reminder that things are going to get worse instead of better. Don’t get me wrong, the Fathership and I face each situation we come across, usually successfully, but it’s mentally and physically draining sometimes. It would be nice to think that in the midst of everything life would stop and give you a break when the shit hits the fan, but it doesn’t, so you have to deal with all these things whilst dealing with life too, which can be complicated enough on its own sometimes.

I’m sick of trying to explain to people what it’s like, or make excuses for the way I live my life or do things the way I do. I appreciate that most people mean well when they say, you just have to get up and do it (when referring to going out), but real life just doesn’t work that way and perhaps if they walked a couple of weeks in my shoes they would realise that. I mean would you get up and leave a two year old child and go to dinner without putting any preparation in place, because that’s what dealing with someone with dementia is like. Any deviations from the normal routine or changes to schedules can have disastrous effects and invoke meltdowns of epic proportions. Sometimes you have to weigh up the pros and cons and ask yourself is it worth having one night of fun to endure 6 nights of torture. When you’re already at the end of your rope and trying to hang on, then answer to that is no.

I’ve wanted to write so many times over these past couple of weeks, but on the rare chances I had to sit down I had nothing to say, because all of this was rattling around in my wonky top box and I couldn’t figure out if here was the platform for it, this is after all meant to be a humour blog. Although I suppose I do try to put my usual slight comedic spin on things. Both the Fathership and I agree on one thing, if we didn’t laugh we’d cry.

I suppose in the end, the conclusion I came to was this, it’s my blog, I can write what I want, and it is definitely better writing about these things to get them off my chest rather than keeping them bottled up. I have however (if I can figure it out) turned off the comments on this post. I don’t want sympathy, that’s not why I write, there are people in the world dealing with much worse things. I just need to expel my ramblings into the ether.

Trust me, it’s good to talk – even if it is just to yourself!

Love you all :)

 

 

What’s sleep?

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I’m tired. So tired in fact that if the Mothership asks me what the trousers I have left out are for one more time, I might possibly use them to strangle her. Not her fault I know, but she is part of the reason why I am so tired.

I resolved the weekend before last that it would be the final one I worked, but somehow I still found myself in on Saturday. I’m doing 9 hour days and throwing an extra one in at the weekend too and it’s not making a dent on the mountain of things that need done. I really wish I was the kind of person who could just say ‘fuck it’ and dander off.

I’m not sleeping either and that sucks. It’s like I have this little voice in my head going ‘hey you, yes you, it’s been an hour since you last looked at the clock……WAKE UP!’ and damn it I comply. When I do finally manage to fall over to sleep one of two things happen, either the alarm goes off and it’s time to get up for work, or the Mothership wakes me with her screaming at the Fathership. She can never understand why I bark like a dog whose just been stung like a bee, but ffs I just woke up thinking someone’s being murdered, not having their bloody hands washed.

Go to work. Drink coffee. Work……really need a power nap, but there’s no time…..work.

By the time I travel home, stand on trains, stand while waiting for trains, stand while making the dinner and doing the dishes my poor knees feel like they can no longer hold my weight and I can’t wait to collapse into a chair, and then I remember I need to leave out the tablets for tomorrow, wash spuds for tomorrow nights dinner and put on a load of washing, because lets face it if the Motherships ration of knickers falls below 15 you would think the world was going to end.

Back up the stairs, clothes laid out for work, and then a quick shower and  finally I get to sit down, god bless my recliner. The feeling of my feet being lifted off the floor is almost orgasmic and as I settle back to enjoy my 15 minutes of freedom I hear the pitter patter of tiny feet up the corridor.

FUCK!! is what I think, but I don’t voice it, I surprise myself sometimes with how calm I am. There’s no privacy in this house. I’m trying to write a post, maybe read a blog.

Then proceeds a 15 minute to and fro about which nightdress she will wear. When that’s settled, there will be perhaps another 5 trips into my room to confirm the decision that we made not five minutes before.

I don’t attempt to sit down again, there is no point. I just stand and wait.

10 minutes later there is the pitter patter of feet up the corridor once again and it’s time to do the teeth. It’ll take a good five minutes to convince her to give me the gnashers in the first place. Then I have to brush the ones that still remain in place, before confirming at least 10 times that the others are safe in the cup for the night and will be there in the morning.

Finally she goes to put the nightdress on. This whole process from start to finish can take about an hour, and meanwhile time is ticking away and my dreams of an early night are shattered.

I used to hate getting into bed before 12.30 am, it felt like such a waste of a night, now I love my bed, I can’t wait to crawl into it. My legs love me when I lie down.

I was so tired…………..but now I’m wide awake.

FUCK!!

Dementia…..if you didn’t laugh you’d cry!

Things you should know

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I did’t stop for coffee this week, so having no other way to update you I am going to do it now, very quickly and most likely in the form of a listing type thing. Seriously, I have become a lady of the lists since I started my new job, it’s the only way I can cope.

Training the top box

Once upon a time, while bored and surfing the Internet I came across an App for brain training called Elevate. When you have no idea whether or not Dementia is going to come knocking at your door,  trust me, you do all you can to assist the old grey matter. I wish I hadn’t bothered, because it just proved what I have known for a long time…..I’m fecking stupid.

It’s a good App and I am enjoying the challenges, however sometimes it speaks to me in a language I do not understand. I don’t mean a foreign language, it uses words like alliteration, which to me sounds like a rave at a rubbish tip, or algorithm, a dancing plank? cos in my head when I see that I hear a – log – o – rhythm.

What however did surprise me was that I aced the estimations for the Maths test, strange considering I passed both my English ‘O’ Levels, but never my maths. Apparently since I have aged my brain has gone all arse about face (back to front, for those not in the know).

I have no doubt that as I progress the tests will get harder causing either one of two things to happen, a) my brain will explode or b) my phone will as I bounce it against the wall in frustration.

Social Media

I am, by my own admission, pretty rubbish at the whole social media thing. I know (because Google says so) that in order for Facebook pages etc to work they must be regularly updated. What I didn’t know (thanks Google), is that telling a rubbish joke once a month is not classed as a regular update. Note to self, improve networking technique.

What I was amazed about however is how far a post can go just from a few likes. A FB page will give you insights into how well a post has done. One with no ‘likes’ will perhaps only be viewed say 5 times. One with 4 ‘Likes’ can lead to views of 100 people. It’s fascinating yet scary, and shows that my friends are very popular…damn them!

On the strength of this, I decided to host a little experiment and see how far a post of mine would go. It made it to the end of the street, that’s a result right?!

Wanna like my page on Facebook? – You can HERE . I regularly update with one joke a month :)

That’s all I’ve got you’ll be glad to hear. Till next time eejits :)

No coffee thanks just water!

If I was having coffee

If we were having coffee…….actually we wouldn’t be having coffee, it would just be you., I’d have to decline and have water instead. Someone gave me a bag of midget gems today and between myself and the others in the office we didn’t stop till there were none left. Now however I am extremely thirsty and I swear the next time I go to the toilet I am going to shit rainbows.

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Never had em? You should,         they are the dogs wot nots!

This week I’d probably spend a lot of time asking how your week has been because a) I care and yours is probably much more exciting and b) it will save me having to talk about my own. You’ll laugh and fill me in but eventually you’ll press me for details.

I’d tell you that I don’t quite know where to begin, or how to sort it into things that are fit for sharing on a blog, you have to believe me when I tell you there are details that you do not need to / would not possibly want to know.

I could tell you that my life has been all sex, drugs and rock and roll, but even you know me better than that…..damn it!

So where do I start, at the beginning I guess, and with headers too. Don’t judge, I’m having a day where I need to be organsied, trust me, it’ll not last long.

Work

I’d tell you that the last couple of weeks have been a roller coaster with more lows than highs. That said it is good to note that there are still some highs, even if they are few and far between. Everyone told me when I started this job over a year ago that it would take time and to give myself 6 months to a year to settle. Let me tell you, I’ve thrown over 365 days and a whole clock at it and I still feel like packing my bags. That said, it’s not all my fault, how is anyone ever going to learn and adjust to a job when it is constantly changing. Enough already, give me 5 minutes to catch my breath.

Food

You’d be able to tell for yourself that my love affair with both Pom Bears and Peanut M&M’s is in full swing. But with a look of steely determination I would tell you that I am soon going to break this habit and wean myself off them. I like the word soon, it is open to wide interpretation, it can pretty much be any day from now until I die. You need to slap me right now!

The Ships

The Mothership and the Fathership were invited to a wedding on Saturday past. Some of my friends here who also care for people with Dementia will know how important routines are and how even slight deviations can cause catastrophic meltdowns. Oh boy we had those, and then some, the Mothership does not cope well.

I’ve probably recited the details of the wedding and the plans at least 100 times in the last two weeks, had the outfit in and out of the wardrobe at least 25 times, had many varied discussions about knickers bra’s and tights, more wedding details, given my assurance I will be there to get her dressed, promised that the hair dresser will arrive and every other day up until Friday reminded her that I was going to give her a shower.  The shower thing might not seem like a big deal to you and I, but you have to understand, she has never had one before, always preferring a bath.

Friday comes and the mention of the shower has the same effect as a lit match being thrown into a cup of petrol. There was so much much fire at one stage that the Fathership and I were almost tempted to toast a few marshmallows. I had to think on my feet and use my preferred method, reverse psychology, telling her that if she didn’t want to shower and was content to go to the wedding stinkin then that was fine with me. Eventually, but very begrudgingly she agreed to go. There were tears, thankfully for once not mine.

I’d read up on this very subject before hand and tried to make it as smooth a process as I could and after the initial meltdown thankfully she calmed down and while not a pleasant experience for either of us, we made it through. I do however have to give thanks to the big man upstairs who heard my plea for help and sent down the gift of some calm. I am very grateful.

Yes, by the way, you’re quite correct in thinking that those are the details I will spare you.

On that happy note I would leave you without mentioning next week. The true test of a friendship is to find out which of your friends return when you have admitted to shitting rainbows.

Till next time eejits :)


Many thanks as always to Diana from Part-Time Monster for her open invitation to coffee every week. You can participate yourself by clicking on the link below:

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