#NationalCarersWeek – Day 3 & 4 – Strategies & Advice

Typos expected

Strategies I use as a carer

  1. Show yourself kindness – buy flowers, have a epsom salt bath, say kind things to yourself – I’m doing my best today and that is all I can do. That takes away the pressure of expectation. We are human and we feel, there is only so much you can handle day to day.
  2. Breathe – sound simple but in times of stress, we clench, we tense up and we forget to breathe. Breathe deeply.
  3. Write/Journal – don’t hold the negative in, toxicity can be overwhelming – get it out. On the flip side, write the things you do well. (make coffee, sew, clean the rooms)
  4. Go for a walk – see the details in the world when you go out – Look up at the sky, birds, colours – listen to nature, the wind, the rustle of leaves. See through the grey buildings and weather, see through the concrete and see the architecture.
  5. Music is an amazingly uplifting, it touches us on a cellular level – sing, dance, put your favourite song on.
  6. Don’t judge yourself harshly, others can do that to you. Ask yourself – Who is lifting you up and who is keeping you down.
  7. Watch your favourite film, comedian, laughter is good for the soul. It revives us and reminds us of our own sense of humour.
  8. Drink the glass of water, cup of hot beverage or something stronger. Listen to your body, it does speak to you.
  9. Surround yourself with people that are uplifting – go to that coffee shop, lean on your friends as someone recently said “that is why I am here”.
  10. Do nothing but rest if you are tired and exhausted. I never visit dad when I feel this way.
  11. Learn a new skill – set yourself a challenge – it doesn’t matter what it is, you will feel an immense sense of achievement.

Advice
There isn’t any advice because every situation is different. I try to connect with my inner voice/intuition
when something arises.
My friend said to me in the last year “he’s not your dad anymore, it’s the condition”. My friend had gone through the same experience as me, and only someone who has can say this. I felt it came from a place of compassion and it was true. It still hit me hard. I watched my mum suffer with lung cancer for three months. I now have now an even slower progressive demise to process. I have to let go of who dad was and accept who he is now. This letting go is not easy, it feels like defeat and I question how I grew up believing western medicine made me think that conditions are controllable and life-saving with treatment. It’s not!

What to look out for and what to ask yourself or the services?
1. Do your research for every appointment and medication being suggested. If you feel empowered, you can ask the questions like – what are the side effects, what are the alternatives? How does this affect the current medication he’s taking? Are there any trials he could take part in?
The system only tells you what they feel you need to know in the moment and not the whole picture.

2. Ask yourself what are the alternatives? Can western medicine work with supplementation? Is a second opinion coming from another medical doctor or are you also looking at holistic others, nutrition, naturopath.
I looked into all of the above and we did get a second opinion. The diet was a stricter one that dad is on now but still follows eliminating sugar completely out of the diet. Folic acid, Vitamin B, Vitamin D, Saw Palmetto, probiotics, Hemp oil, not all at the same time.

3. My dad has diabetes, so I do his shopping, cook his food and buy as organically as possible with little to no sugar in the items. This is tricky as not everyone can do this but could you look at ordering online for healthy ready made meals to be delivered?
Also check sensations in the hands and feet and legs, they are the first to go and older people will not feel pain, cold, hot in the same way.

4. Refined sugar has a massive affect on dad – it makes him grumpy, tired and have a sugar slump. I used to find chocolate bars/bisuits hidden around the house. I also ask myself has he slept properly? is he hungry? has he been up late? has he had enough water? Has he had too many visitors and it’s overwhelm?

5. Dad is deaf in one ear and hard of hearing in the other, accents and speed of sentances throw him and he will either pretend he heard, misinterpret what is said because he has caught some of the conversation or be irritated because he cannot be part of the conversation. Check-in – I check in with dad periodically as to what level I need to raise my voice and how slow I need to speak.

6. What treatment is causing/having the most detrimental effect? This sometimes is difficult to see or undertand. I cannot emphasise enough, read the paperwork that comes with the tablet, look online at the ingredients and side effects.
Prostate Cancer – Most men die with it rather than from it. We opted not to go for radiology – consider Quality of life over quantity of life. The side effects of that therapy with erectile dysfunction, more tablets and more side effects was unthinkable.
Dad is on bicalutamide – a prostate cancer tablet. He went through the slow release injection before this and it was causing long lasting dizzy spells, feelings of nausea, mood swings. This tablet is slightly easier and we’ve worked out a plan of three times a week with the side effects over night rather than during the day. The side effects last about 18 hours, tiredness, grumpy and he has pain in his muscles which is a side effect.

7. Memory tools for dad – photos/cards/calendars with family members. Some days I go to see him and he doesn’t recognise me because of my hair is different, my clothes.
– A phone with big buttons / a mobile phone for emergencies
– A big clock with date, time, month and year
– Games – Connect 4, Snakes & ladders, wordsearch, colouring books, dominoes

8. Carers in place through Access Services

9. Awareness of objects and stuff – Look out for bruising – I check my dads hands, legs for any bruises. What is inhibiting the space, rugs, chairs, radiators on the walls in corridors – my dad is angry and upset with me for taking these away but two OTs, The Dementia Navigator and the doctors from the hospital said they were a risk. Buy Arnica cream, great for bruises.

10. Hydration – I cannnot emphasise this enough – older people do not drink enough, this can also affect the mind. Lots of water is needed and not tea/coffee. Water!
Jelly Drops – I found these on instagram, they curb the sweet craving, hydrating and do not cause any laxative effects.

Services

  • LPA – Lasting Power of Attorney – for health and finance – get it done asap! No one tells you how important this is to do. I was given incorrect advice, it doesn’t matter if the bills in my name or I share a joint account with my dad. This legal documentation offers peace of mind when the shit hits the fan.
  • HNG Project – counselling – I cannot emphasise how important it is to talk to someone – self-referral can be made for free or low cost counselling
  • Park Theatre, Reminiscence group – Finsbury Park – For some reason my computer will not allow me to link it.
  • Islington Carers Hub – Lots of activities at outdoor spaces
  • Dementia Navigators – Fall sensors – Necklace or wrist pendant
  • Admiral Nurses – not available in Islington support for carers of dementia loved ones
  • Age UK – a range of services and support advice
  • Mobilise Online – As above but offers a cuppa in the evenings, sharing place for carers
  • After Umbrage – After a form filled out by your GP – a place for restbite
  • Fragility Teams in hospitals (Below – jpeg flier) – I did not know these existed – but all the services under one roof did a thorough examination of my dad and one doctor got the ball rolling to look into his progress and situation at home
  • Occupational Therapy – Looking at the risk safety aspects of the home and person – do they need a walking stick? Raised chair, bannister, bathroom conversion to wetroom. Normally referred by GP.
  • Taxicards – should apply for as taxis are bloody expensive
  • Access Services not Social Services – Putting the carers in place to support. depending on income/savings of the person being cared for you may have to contribute. I keep them in the picture via email about everything, stress, changes in behaviour with dad, toxic people etc.
  • PIP – Personal Independence Payment for 67 years and under
  • Attendance Allowance – a 26 page form my friend helped me with
  • Carer’s Allowance – Only available to full-time carers at a pittance of £67.70 pw
  • Carer’s Assessment – You may get money off cottages, massages
  • START programme – a 6 week programme introducing you to dementia, offering tools and techniques but these change with time too.
  • Free bus pass
  • Free TV licence
  • Winter Fuel Payment – Contact the gas/energy supplier
  • SHINE services Offering ways to save energy in the home and protect one from cookers being left on etc.
  • Fire Brigade – free alarm check and explains the risk of putting chairs up against doors and broomsticks or mops
  • Cecelia’s Cafe (Alzheimer’s Society) – Activities and builds on community
  • GP – should give you as much info as possible, ask questions
  • Care plans – Knowing the wishes of the person you care for in the long term, health-wise, do they want to stay at home until the end. Division of property, items, money especially if they do not have a will
  • Wills – Get one done if you still can
  • CQC – Care Quality Commission – complain if the services are bad – do not feel guilty. It took me a year and half to complain to my GP and dad’s GP about their services. I sat on an email for 5 months to make sure I wasn’t reacting from an angry place. I even spoke to a friend who worked for CQC for advice and waited for 5 months before I sent it. The advice was to complain if you are not happy, not eneough people do. Remember you are not complaining, if you are entitled to a service and you are no receiving it then think of it as standing up for someone you love. Essentially you become an activist for someone who cannot speak for themselves, their health etc.
  • Befriending Services – It’s difficult when you are alone and have no one
  • Podiatry – My dad doesn’t fall under the bracket of completely unable to walk, so he cannot obtain podiatry services, I have to take him to one
  • Bladder & Bowel – This isn’t an easy one but at some point it has to be done as and when

National Carers Week – hashtag – day 1

Another telephone call in the middle of the night from the Telecare services that my dad has pressed his sensor button and they are calling to make sure he is okay. He cannot hear the call, as the telephone is not in the same room and if it was, he would only unplug it. He sees at as a monetary saving cost. I see it as life-saving. How do you explain that to someone who has dementia? How do you explain “guilt”? There’s many things I feel guilty about, not doing enough, not being there on the days I have energy, not checking in when I’m up to it with work, not answering the fifth shouty telephone call blaming me for stealing money, stealing chairs, controlling his life etc. Sound familiar?

Reading up on dementia and the associated organisations, they talk about how the person remembers “feelings” – how they are remember this over everything? I often think what will I remember? How much processing do I have to do as a carer? How do I feel?

I’m a label in a system that sees me as nothing more than that. I am careful to navigate the various branches of the system, like I navigate my dad’s changes, looking for the changes is the key. Patience is also a facade to cover the anxiety that fills me. Any display to the system of frustration from me can be labelled as “unhealthy, unfit, of un sound mind, mental health issues, angry” and yet I feel all of these things.

“Take care of yourself” is what I hear often or “You are doing briliantly, I wish I had a daughter like you”. After a while, these words of support sound like patronising sanctimonous bullshit. It’s ilke each NHS services has been charged on offering this line of support. The GPs, the nurses, the Dementia Navigators, the OTs, Age Concern and so on. I know I sound so ungrateful for such wonderful services all free of charge! It’s a system of disconnection, a system that wears you down, it’s not simple and communicative, it’s hours out of your life that you will never get back, you never get paid for and you have to give back in hours of actual paid work.
These systems work in the same arena but not in the same area or hold the same responsibility. Now it’s someone else’s job, and if you ask for help, you have to do the calling, you have to fill out 26 pages of convoluted confusing paperwork. It’s like doing essays at school, there’s a construction to follow and if you don’t it’s F for failed – fucked up – fuck off.

I feel deeply for those who have no one to help or assist, for those who get left behind or lose out on monies that are rightfully theirs.

Where does all of this anger, strain, exhaustion go? In my body! I become ill, injured, sick. I forget things, I drink, I eat crappy food.

One person I need to shout out to is my partner, my hubby, I cry many a night that he is still here, present and just as exhausted, standing by me, holding my hand. Answering the Telecare services at 2am when they can’t get hold of me, patiently telling me to ring my dad to check he’s okay. The guilt I feel knowing he has to get up at 4am for work and he doesn’t get mad or angy. He is not my carer and I had to disentangle that label that was beginning to appear. He is my lover, my love, my friend, the one who makes me laugh, who tells me he loves me. He tells me how it is whether I like it or not. I don’t always agree but the respect is there.

It has not been easy and is not in any way one model fits all.

I feel exhausted – mentally – physically
I feel shitty – about me
I feel and am angry, at myself, at the world, at my dad – he’s never been easy
I’m passive aggressive – I hate it, it’s a skill I learned from my family
I feel alone/lonely – siblings who do not like me
I say sorry…a lot – a childhood trait
I feel unattractive – It’s uncomfortable to fathom the opposite
I feel fat – always
I feel non-sexy – Have I ever been?
I feel like a fake – How do I get up and still show up in the world, feeling the way I feel
I feel like I can do no right – a childhood trait
I’m stressed – I cannot breathe
I lack patience – especially when I am being shouted at by dad – I question – is it the condition or is it him?
I lack empathy – I feel numb from a compassionless upbringing
I lack energy
I hide behind a smile – It’s the only effort I can make at work
I hide behind work – I am a workaholic
I’ve lost my sense of humour – I’ve discovered, I can actually be funny…working progress
I don’t understand things that are said or the tone in which they are written in sometimes – am I dyslexic?
I forget stuff sometimes and – is this the beginning of memory loss?


Holes are dug by our deepest demons and some how some way you have to crawl, scratch, fight your way out. Some of those demons are not only within or from childhood they are out there in the physical world too, they are called “institutions, systems”.

A year out of all activities other than work. Re-focus. Prioritise. Look at working on building my mental and physical health. Working on me. Putting me first. What does that mean? I’m still figuring it out. I work toward being a better version of myself every day. I won’t get it right but that’s okay. And that has been my mantra for the last year. “It’s okay”.

It’s okay to stop, take time out, relax and do nothing, not train at the gym, not to see anyone, not to see dad on the days I am exhausted and have zero per cent resiliance. It’s okay not to do my passion for a year, not to be involved or be seen. It’s okay to be me, find me and live with me.

When I asked for help from my dad’s GP and my GP, all the words they could offer was “have I thought about giving up my job to become a full-time carer?”, instead of suggesting counselling. I was pretty shocked and astounded about how loaded that question was. Sexist, yes! At no point did they say I could “self-refer”. When your mind is consumed with a thousand things that are not yours, some guidance to a new path could be given.

I hope you find yours.

https://www.stressproject.org.uk

https://www.mobiliseonline.co.uk/