Weekly roundup

I’d hoped to do a proper blog post this week but I simply haven’t had time.  Inbetween visiting Mum every day in the hospital, clearing up after my birthday party, seeing to the dog, helping my Dad, shopping, cooking, washing and going to Camera Club the days have passed in a blurry, exhausted, painful, hectic haze.

However, the good news is that my Mum came home on Friday afternoon so I’m hoping that life with return to some semblance of normality.  Of course, once the adrenalin on which I’ve been running for the past several weeks has subsided I will inevitably crash, so I’m anticipating then spending a couple of weeks in bed feeling like the living dead and getting behind on my jobs all over again but that’s just the nature of the chronic illness beast.  I’m also expecting hives to appear any day and am amazed they haven’t put in an appearance before now, stress being my number one mast cell degranulating trigger.

The Hospital arranged for Mum to have a carer come in the morning to get her dressed, but they hadn’t arranged for a carer at night to get her undressed.  I did point out that if she can’t get dressed then she can’t get undressed (!) so before she was released I asked firmly that a night-time carer was put in place.  She can walk to the loo on her own with her Zimmer but then can’t pull her pants down because she’s holding on to the Zimmer so my Dad does that bit.  I asked what happens when she needs the loo on the night and my Dad is sound asleep in the next room and they apparently hadn’t thought of that!  So this morning a commode has been ordered to put next to her bed.  I honestly wonder what planet the social care team in hospital is on, because they clearly have no idea of the needs of their patients.  I think they just assume that because Mum is married my Dad will do everything, and I had to point out that he’s nearly 80, has arthritis and dementia and if they thought for two seconds that he is going to make himself ill looking after my Mum they can think again.

Before my Mum came home I made my Dad tip all the alcohol in the house down the sink.  He was reluctant and said he felt guilty doing it, which just shows the level of emotional blackmail an alcoholic has on those around them.  I, on the other hand, had no such qualms but then I’m not the one who has to live with my Mother, my poor Dad is.  I then had the unenviable task of telling my Mum that there was no vodka in the house so not to even bother asking.  I lied and said the doctors had told me that if she drinks she’ll kill herself as she’s so poorly, but then she had a go at me for discussing her drinking with the Doctors.  So I had to explain that you can’t go from drinking a lot every day to stopping suddenly because you could have a seizure, and the doctors needed to know that so that they could give her medication to help.  Due to the shame of alcoholism she wasn’t happy I’d talked about her drinking with the doctors so I just said “well if you didn’t drink I wouldn’t have to would I?”  I refuse to be made to feel guilty for her behaviour.  I’m not totally heartless, however, and realize she drinks for a reason so I’ve arranged for her own GP to come and see her on Monday and I’ll have a chat with her about the situation.  I’m hoping there may be some counselling available – my Mum definitely needs to talk to someone about her issues and should have done so years ago.

While my Mum’s been in hospital I’ve fully realized the extent of my Dad’s dementia.  He basically has to be told what to do every second of every day and you still have to check that he’s done what he was supposed to be doing.  He needs help to choose what to eat, help with phone calls and paperwork, and just general constant reassurance that he’s not alone.  He gets incredibly stressed when asked to do anything outside of his normal routine and gets himself really worked up about life in general.  And he’s only at the mild end of the dementia spectrum!  It’s a bloody awful disease and my heart goes out to him.

People around me are telling me to get more help with my parents and have no idea that the help simply isn’t available.  Yes my brothers should do more but the truth is they have no intention and would genuinely leave my parents to get on with it rather than step up to the plate.  Carers only do things like shove a meal in the microwave and help with washing and dressing.  They aren’t going to spend 2 hours re-arranging the furniture in the lounge to accommodate Mum’s zimmer frame as I did on Friday morning, or putting together the commode, perch stool and toilet frame which the hospital Occupational Therapist ordered and my Dad had to collect from a shop in town (the OT doesn’t even visit the house to do a proper assessment any more FFS).  There is no-one to do banking, open and deal with post, arrange follow-up hospital appointments, chiropody and hairdressers to come to the house, no-one to fix the intercom at the front door which has chosen this bloody week to stop working and no-one to unpack my Mum’s case from hospital and re-pack it with new stuff in case she needs to go back in.  All the things we take for granted that we do in a day until we can no longer do them.  I admit I’m so knackered I’m a bit grumpy and people’s suggestions of getting more help (like I haven’t fucking thought of that!) are getting on my frazzled nerves.

To be a bit selfish for a minute, I think everyone forgets that I am also ill and while I’m looking after my Mum and Dad there is no-one looking after me (mind you, the fact that no-one looks after me has been ignored for the last 23 years so no change there then).  I made sure yesterday that my folks had everything they needed, that their dinner was made, that Mum had a clean nightie to put on……..and came home, exhausted, at 6pm to find my bed wasn’t made, I had no dinner organized, my dishwasher was full and there were dirty dishes all over the kitchen counters from not only this morning but yesterday and the day before, my bin needed to be put out and I realized I hadn’t washed my hair since last Saturday (thank God for my wig!).  These are one of the few times that I miss having a partner.  Mind you, from the last few boyfriends I’ve had I would still have come home to an unmade bed, no dinner and a dirty kitchen because they were lazy bastards who did fuck all in the house, and the things they did do they expected a sodding medal for, so maybe I’m not missing much after all!

I’m sure things will settle down in the next week or so but just at the mo life feels a bit overwhelming.  I could do with an afternoon at the Spa or an evening out amongst normal people but don’t have the money, time or energy for either!  Maybe next month.

 

 

 

 

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8 thoughts on “Weekly roundup

  1. Sarah

    Morning 🙂 I don’t really know what to say to help because it’s not words you need help with but actual physical help. I understand your frustration with social care. I am too ill to make an appointment for them to come out and do the new yearly assessment, mainly due to being on strong Oxy I can’t think straight and sleep a lot and they don’t get rid of the pain just take the edge off. Also they wanted to come out whilst I was being reassessed from DLA to PIP. I’m waiting for my next lot of injections and I need another op. Their response was to freeze my money, so in effect leave me without care!
    I have to tell myself to try and switch off and have me time and give myself permission to do this. What people who work don’t realise is that they have a natural switch off time, a routine. When you don’t work I find my mind is always “on” and doesn’t settle.
    I think maybe you should spend some time and write a timetable of things that need to be done for your mum and dad. Allocate jobs for your brothers and give them a copy. Tell them you have given this to social services or an OT or her Dr. I find with men, they respond better if they think an outside person is monitoring them! I find they don’t like to be embarrassed to someone in authority. It’s almost the “wait until your father gets home” thing

    Thinking of you x Sarah
    (Ps it’s genetic with men. I’ve always been a single mum to a boy, and he exhibites all the lazy traits of a man and moans that I nag but doesn’t get the concept that I wouldn’t have to if he just did what I asked him to do! Men!!)

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    1. Jak Post author

      Every single man I’ve ever had a relationship with, bar none, has been lazy and selfish and expected me to look after them like it’s my job. That might be one of the many reasons I am single! x

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  2. Laetitia Lalila

    Dear Jak, you sure do seem to fight a neverending uphill battle these days! You are so toughtful and kindhearted to help your parents so much in spite of your pysical state.
    I wish I could make it all go away for you. For all of us.
    xoxo

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  3. d

    Hi Jak, so glad to hear your mom is well enough to be home. Your parents are very lucky to have you to help them and be a strong advocate for them.

    I hope you get some down time soon. You need a rest!

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  4. danieljuk

    so glad you got your Mum home!
    When my Mum was being transferred home, we hardly got anything! They sent a commode home with her on the ambulance and we had a board to move her from wheelchair to sofa or bed and medicine! We had to hire a wheelchair and buy so much stuff, including a toilet frame! We worked out we spent an awful lot of money and I guess my family can afford to pay for what we did but we thought of people with no support at home or have no money for wheelchair taxis or wheelchair hire! Just awful! The hospital in London gave us much less than in Derbyshire! and then if you try to give back NHS equipment they have given you, they refuse it!

    I found caring for my Mum so exhausting! My anxiety went a bit better but it was so tiring! We nearly hired help but we know (like you said Jak) they are pretty rubbish for the money! It’s much easier now and she is fully independent again but we need to solve the support in this country and with haste! I personally don’t think my Dad and I should have had my Mum back so soon, she was so tricky and we had no backup really. But people seemed shocked we looked after her but there wasn’t really any choice!

    Anyway I hope you don’t have to do everything, get other people to help in any little way they can! glad she is home ❤

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    1. Jak Post author

      Thanks hon. Sorry you had a similar experience with your Mum. Until you’re faced with it you have no idea how little help is actually available! We already had a wheelchair for Mum which I bought off Amazon – the NHS ones are shite and you have to wait bloody months for one :-/

      Will do a proper catch up mail soon and fill you in on what’s been happening. As you say, it’s *exhausting* taking care of someone else when you’re ill yourself and I’m not so much flagging as passed out 😉

      xoxo

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    2. danieljuk

      forgot to write in the comment, I know some friends who are an M.E couple who care for each other. I don’t know how they do it after my Caring! They live totally independently together but both have motorised wheelchairs.

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