Dementia

Grief – What does it look like?

/ Maria Thomas / Leave a comment

It’s four weeks today since dad left us and how does the world look? Lonely, hollow, in a daze. People are talking and I’ve zoned out, or I’m exhausted or I’ve forgotten what they have said. Currently, silence is my friend. Coming home after work has been difficult as some days I would usually go straight to see dad. I realise how much I am holding in and I cry when I get home or on the way home.

It’s hard to be honest at work as to why you want to leave work, to go and speak to your therapist but there’s no way around explaining why you need the time, it isn’t a given. Equally I am grateful that work understand and have given me the time off. 

I’m starting to feel anger towards all sorts of things, little triggers. I feel irritated by the smallest things and at the same time I know they are small inconsequential moments. I am fighting the urge to allow myself to become irritated by people and moments and I know this is not me. I am justifying, reflecting within myself, having conversations over again within to make sure what I am thinking is actually from a genuine place or from somewhere else.

I told my therapist recently I understand the light and the dark can exist all at once and that’s okay. Probably the biggest take home from her since I started having therapy. The light and the dark feels deeply vast and expanse. Although the darkness is more attractive and can feel comfortable as I have been there growing up and through moments of my life.

I am getting married next year and I had two scenarios in my head, either see my dad before I got married or see him the day before.  I honestly thought he would be with me beyond 90 year which he would have been in April. How could I have been in denial for months. I weep and sigh, I thought I had more time. In reality I had the best of times I could have had under the circumstances. 

One of my closest friends spoke to me the other day, she was the one person who checked in on my mum when she was admitted to hospital on various occasions and when she had lung cancer. She said “you have all this time to adjust to, you spent years looking after your dad”. I don’t think that has completely sunk in yet.

I think of all the things my parents didn’t get a chance to see but I remember all the things they experienced with me during their lifetime. There was something about wanting to be the first person to obtain a degree, the first person to get married in a western way. I wanted to make my parents proud and I know when growing up, nothing felt like it was good enough for my dad. As an adult and a reflective person, I know my parents came from their own lack of “enoughness” from their own parents and their own belief of what they hoped to achieve in life. I was a “people pleaser” for my parents as I wanted them to be pleased and happy with my achievements. There were many rebellious moments where I couldn’t give a f@@k and my parents didn’t speak to me. Ahh those teenage years but you have to go through them in order to understand or try to.

Poem
Hold my hand and tell me that one day I will see you again
Not on the shores of the sea, in the cold and grey
Not in the darkness and seeking the light
But on a bench where we sat talking, laughing, walking together

We listened to the birds, we watch the squirrels ferrying for nuts, the sky held a calm
We smelled the rosemary and the mint together, we held the apples from the garden
We sat on the bench and enjoyed summer days
I miss the stillness, to be or not to be moments, the smiles, the pain, the loss

I hear your voice still, I hear your laughter in my heart, I see your struggles
They were not nice, they were angry, fearful, lost in a world of non-sense
A world where we know this sense, this hollowness, this part of you or me
That dissolves into nothingness

The tension in my stomach has not left, the silence of my phone disturbs me
I miss your voice calling me, I know you’re with me. 
Dad – I cannot do this again, the caring, the arguing, the understanding, the loss 
at every stage. I cannot find the patience, the empathy, the many stages, the hurt,
the grief.

I ache, I hurt.

In Search of Myself

/ Maria Thomas / Leave a comment

For a long time I’ve been trying to figure out how to stay in touch with my intuition and guidance system. I feel blessed to meet people who want to talk about their own spirituality and will share what gifts they hold. Sometimes, I feel so vulnerable and such an open book even if I don’t share much. I can feel that I am being read, or at least I feel like I am. Notice the difference between the feeling of being “read” and the feeling of being “judged”. I used to feel judged but that was/is my own trigger that has been brought to the forefront of my own fears.

I am also aware there are times when I feel in sync with the universe and other times I allow myself to be consumed by the noise and be distracted by things that should not be within my framework of goals. And what exactly is my framework of goals? I still don’t know. I asked myself the other day “when did I last feel alive and one with the universe?”. It was a looooonnng time ago. There are always moments that I feel in sync but now they feel like moments of continual momentum. Not in the motion/active way but a spiritual inertia.

I am finding comfort in being able to speak about my spiritual, intuitive side as more people are discussing their own. I am always in awe of the gifts that people have to hear, feel and see clearly spirit or happenings. And living in a physical world does carry baggage of that limited, trapped mindset and how everything needs to be scientifically proved or have validity in some way. Not everything has to be scientifically proved, does it? There are many that believe in a god, can we prove this existence scientifically or is this faith of something more?

I am a curious being and like to question everything within reason, not necessarily for explanations but for perspectives. My mum delved into the world of faith-healing, fortune-telling, she read cards, palms and it fascinated me but also scared me.

At present I seeking more of an understanding of how I work, my own blocks; and to allow life to unfold by deeply trusting myself and my guidance system. “Guidance system” – what does this mean? An inner voice, a sense of timing, energy and space. Also, trusting the universe has my back. Does this sound all woo woo, maybe it is but what if it isn’t. Why do people say things like “It felt like someone walked over my grave?” or “I feel like I’m having de ja vu”.
I am so grateful for many things and at this particular crunch point it is helping me with utter grief that I feel daily.

.

My dad has lived with dementia and prostate cancer for the last 7-8 years and it has been the most difficult, traumatic time of my life. I can’t imagine what he is going through, how the neural pathways are disconnecting his memories, and closing off parts of who he was as a fully cognitive man. Am I denying death or am I seeking answers that will make it more acceptable?

I am conflicted, I am overwhelmed, I am cherishing all the moments I speak with him, hold his hand, hug him, see him smile because there are too many times the anger settles in. I feel he is in pain, physically, he is also probably angry to be losing his identity, basic functions of the things he used to know and do so well, so independently. He is losing himself in the physical world. How and why does this happen?

One of the things I recently learned about me, was that I was playing the victim, well at least saying something in a way to evoke sympathy and to make myself feel better, to support the fact that “I’m doing a good job as a dutiful daughter” by caring for him. I know that I have lived with a lot of guilt, shame, even hatred toward myself for not being a better daughter or a better person, for arguing with him before and after all of his diagnoses, for feeling angry for many unanswered questions, that his past was hidden from me, for not being able to say what I wanted to say or ask.

Along this journey for the last 8 years, I have learned to love myself more, take credit for fighting for dad and making sure he has a good quality of life, to uphold his dignity when needed and know that I made a choice to be there. No sad stories anymore but acknowledge the trying times, the hard times and no capacity times.

I hold myself through this time. I love myself along this path. I shine through even though another piece of me is dying, his memories are my memories. His loss is my loss. This last part of the journey has no words to describe. I’m still here. I’m making the best of the life I have.

I wrote the above during the week of 21st October 2024, I am now at 15 December 2024.

In the middle of all of this I joined an online event called ‘Alive’ by my friend Lois Tucker. She has since run a course called ‘Clarity’ which I knew I had to join as I was in the middle of grief.

My dad passed away on 26 November 2024, my sister and I were with him to see him leave peacefully. I was glad to be present and say goodbye in-person but it hurts and is one of the most difficult experiences to go through. I am now parentless, an “orphan” as a few described. Dad was buried on 28 November in accordance with his Muslim faith.

How am I? I’m not sure? I feel in limbo, I feel like I’ve grieved a lot already and I feel that I haven’t. I feel alright, I feel at peace knowing dad is at peace. I feel irritated, angry on occasions. I’m exhausted. I’ve gone back to work and welcome the distraction but could do with time off. I wish you could take paid leave for a month or so like maternity leave. My body has begun to untie itself and I can feel the aches and pains, I hadn’t before. I feel a slow decompression.

Everything has felt so surreal, in some ways I want to close my eyes and awake seeing my parents; having the chance to hug them again and tell them I love them. The transition from physical world to spiritual world is tough. I wanna hold my dad’s hand and tell him I love him and give him a cuddle. I want to feel the cool skin of my mum’s arm and tell her I love her and hold her close.

Some of my memories torture me like a time I came straight from work to the care home to see my dad before he had got into bed. I arrive just before 6pm and he called my name, Mya. Mya has always been mum and dad’s nickname for me, dad had the biggest smile on his face, I’d open the curtains and he was so happy to see me. We were talking away for the hour I was there and normally I take a photo of dad and me when I can, when he allows, allowed me to. I keep telling myself I should have captured that moment.
When I told my partner this recently, he said “if I had then I wouldn’t have been present to enjoy the moment in the way that I did”. He’s right. I had many moments with dad and feel so blessed I was able to.

2023 – Where am I?

/ Maria Thomas / Leave a comment

Mid-September 2023
This past week has been a rollercoaster ride of a journey. I cannot find the words. I am lost in turmoil, trauma, realisations and a grief that sits with me every day.
I am the child who has become the parent, I am the sole child, the youngest child who has sole responsibility. I am unique in this life with a lens of how I see and view dementia effecting my Dad. I don’t know how I feel anymore or what I feel.
Sometimes, I listen to others to remind myself what it is to feel empathy, what their journey is because in so many ways I feel like I have to numb the hurt to get through what is happening right in front of me.
I am losing my Dad, and I want to cry uncontrollably, I want to scream at the world for the way his mind is being played with, manipulated in past and present. Pensive with trauma, and observing the things he can remember, those things that are his, his space, his environment, his home.
I no longer feel the duties of a daughter but the sadness of loss. I feel like I am losing another part of myself, the loss of me whilst losing him and nothing can take away that feeling.

I have had so many kind messages during this time, but I cannot speak. I cannot answer. My capacity has been reached. How do I explain this without explaining. How can I be me and not me right now? How can I be happy when I feel alone?

My therapist and I have talked about how the light and the dark exists at the same time, and it’s okay to feel the conflict of both. It is normal. I, sometimes feel like “I am a good person” but equally I want to tell some people to f**k off. Not friends or family but people who lack that empathy, who don’t understand what it’s like to have dementia. Who think they know but haven’t lived with it, never seen it up close, know it personally. Is it a generational mentality? Is it a lack of empathy? Is it a lack of care and compassion?

I have seen trauma, I have seen the darkness this week and not my own. I don’t know how I have become resilient, may be I had the armour growing up to protect myself but equally I feel exhausted by everything, everywhere, all at once. I am going to make one of the hardest choices of my life and it feels shit, selfish but necessary. My heart is on the floor and I am trying to scrap pieces of it up to make the whole again. I feel like every step is a fight, every service that I am dealing with for my Dad is broken, disconnected, refusing to take responsibility, passing it over to someone else. These are the effects of a government who have sold off and privatised our NHS.
Dementia accelerated is angry, cold, disengaged, no reasoning, childish, teenager rants, emotionless, full of expletives and confrontational. At least the strand that I have to deal with, what this week has been like.

Am I coping? I think so?

Have I done anything for me? Eat chocolate. No exercise, which helps me. No work, as it has been a wave that I have had to ride.
Am I grateful? Yes, for an understanding work place and words of support and advice from doctors I know personally? For my partner. For the friends who have reached out.
I remind myself I’m a step-mum. I remind myself I act. I am worthy, I am enough. I remind myself that I am doing my best and that is all I can do. Does it make me stronger? I don’t know.

For the first time in my life since Mum died, I have not been able to focus on anything else but Dad. For the first time I noticed the triggers from possible past traumas and they sat with me, they sit with me. I have to stop myself from feeling guilty because that part of me says “could I have done more?” and I know there’s no more I could give or do. And when you think no more could happen, more comes along to test you.

December 2023
Christmas is over and a new year is almost here. I think of the journey these past three months, almost a quarter of a year and I have finally had to make a decision I thought I wouldn’t have to make. Moving Dad into a home. His care needs are greater, my time with him has been demanded and the last hospital visit still has me reeling with anger and dismay. A different hospital encountered with a different response to dementia and trauma. I am still fighting the shock that administering an anti-psychotic to a man with dementia whatever the dosage, and not communicating with the NOK was a priority than reading the patient’s history or records.

I draw closer to another year without Mum and wonder how have I become a parent to my parent? Mixed emotions have consumed me since April, no time to breathe, to absorb, to process moment to moment. How to make time for me, where do I find the time? Having my coffee in the morning, brushing my teeth, going to the toilet??? I am grateful for counselling, I am grateful for trying to put boundaries in place and acknowledging how much energy I have for myself and others? Overwhelm, over-thinking- over wrought with 2023. I keep telling myself it’s ok, everything is okay but am I okay?

I notice the tiredness much more, I notice the weight gain much more, I have stopped regular gym going. I understand that one doesn’t let oneself go, you prioritise where the energy has to go, where the focus needs to be. Sometimes it is a waiting game, sometimes you pause and it feels like weeks and months. I tell myself it’s okay, but is it? I have high standards but when you are on the edge of being an empty vessel that cannot refill or refuel what do you do? You keep going because there is no choice.
I cannot bear to listen to the words of unwanted advice or comfort. I am fed up. I am at my limit. I don’t want to hear anything that anyone has to say unless I ask. I just want a hug, I want to feel, I am numb with pain with hurt with anger. I am numbing myself, my soul into the unfeeling just to cope. I have the barriers of my childhood youth raised high protecting me from my emotions, protecting me from the fuckwits. I feel the negativity of youth which I attempting to embrace rather than despise and coax the inner child into warms words and arms of embrace. “Everything will be okay”. I wonder which side of the family the air of “control” came from. I know where and unpicking and unpacking is effin hard.

I want to lay on the cold grass and sink into the earth. I want to drink the loveliest of red wines and not feel woozy or slightly drunk. I want, I want, I want. Where is the gratitude, I hear myself ask? Where is the positive, upbeat Maria who I use to know? Lost in a lonely shell especially this time of year. I am reminded how lonely I feel, and do we choose this loneliness or is it just so? Am I depressed or am I mourning the loss in its everyday form reminding me I will have to empty another home because this is life. I end 2023 exhausted, internally broken and full of anxiety and self-doubt but I enter 2024 with hope. Hope, that life will be different and I will find who I am, once again in the world without the guilt of remorse.

One of my affirmations is “I intend to have fun”…sigh…one day, right.

Blessings for an amazing 2024 for all of us. Thank you if you made it thus far.

#NationalCarersWeek – Day 3 & 4 – Strategies & Advice

/ Maria Thomas / Leave a comment

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

Dementia

/ Maria Thomas / 4 Comments
Me & Dad

Writing is cathartic, writing is creative, writing is liberating. Writing is also a vehicle to express one’s most inner thoughts when sometimes vocally it can be challenging to express.

I feel like there ought to be a group I go to and stand up and say “Hello, my name is Maria and I am a carer for someone with dementia”, and then tell my story. This year I figured I would focus on my mental and physical well-being by not taking on a million projects and try and give myself some love, rejuvenation, rest and strength in training.

I’ve been a carer for my dad since 2014 and in short, it’s tough. I’m grateful for many things before you say anything, I have written in my journal, and yes I meditate, do regular breathing, write the things I am grateful for everyday, exercise regularly and spend time with people who lift me up. Nothing can describe or be prescribed or prepare you for the constant pressure, the resentment, the stress, the anxiety, the triggers, the memories, the forgetting, the patience, the impatience, the anger and more.
I love my dad, and that is not in question here but there are a number of people like me who get left behind, who get left holding the weight of responsibility and again I know it is a choice but also an expectation from the institutions that you “are doing incredibly well”. That confirmation suddenly begins to sound very patronising.

I cry a lot, sometimes silently inside, when I walk home from my dad’s house, I cry on my own at home. I am tired and exhausted and my physical health is beginning to be affected by the stress factors of worry and dare I say loss. Am I grieving?
Last weekend was the second time in two weeks where my IBS was triggered by foods/drinks, on Monday I fainted hit my head on the wall and passed out. I awoke on the floor of my tiny toilet, wondering if I would be able to get up or if I had broken a bone. I got up bruised, embarrassed and called my partner for help. Luckily, this isn’t a long term injury or condition but it could have been. I’ve been ignoring the signs to look after me for a while. I’m no martyr, I get on with it.

I’ve spoken to the various services for help, and you get passed from pillar to post because none of them speak to each other. I’ve consistently asked for help from my doctor/from my dad’s doctor, the responses came back;

  • Would you like a sick note for some time off work? (no)
  • How would you feel about giving up your job? (the one thing that I love and keeps me going)
  • Would you like anti-depressants? (I don’t need to numb the pain, I need to talk about it)
  • Could you give up your job to care for you dad full-time? (that is not an option, I have a mortgage and bills)
  • What can I do? I’m not sure those services would listen to me. (call them, write to them)

And then the questions from the various services;

  • Have you tried the START programme (yes, but it’s only a six week programme that helps you understand dementia, offers tools and I do most of them. It doesn’t prepare you for the changes and how to deal with them.)
  • Have you applied for carer’s allowance (it doesn’t apply to me I work full-time)
  • Have you signed up to the activities for carer’s online (are there any activities after 5pm? Weekends?) No
  • Can your dad do activities online? (I work full-time, there’s no internet access) Can you not be there? (no, I work full-time)

I look at the Alzheimer’s Society website, the data from 2018 suggests carers save the NHS 132 billion a year. Wow, I am astounded and yet I feel like there is very little care for me.

There’s been a lot to deal with over the years, housing, money, diabetes, a half brother, extended family, prostate cancer, not being Egyptian (say what?) and now dementia. I often think what did I do in a previous life? Is this my Karma? In the end, it’s just the cards I’ve been dealt. I am lucky I have an understanding partner because I have not been the easiest during this time, I have been solely focussed on my dad, using all my reserves to be there for appointments, clean the house, cook the food and I’m no saint because it has triggered past emotions, memories of growing up in a house where love didn’t exist, there was no “I love you, you’re doing a fantastic job”. There was no support in my dreams, I was constantly belittled, I was blamed for everything, where my strict upbringing was due to my dad’s undisclosed faith, undisclosed truths, where punishment was still acceptable by the hand. 
I’m surprised my partner is still with me, just when I thought I was opening up to me. I’ve become withdrawn, suspicious, irritable, closed down, angry. I need an outlet and it shouldn’t be unleashed on him.

Now, I don’t say these things out of pity or hate, I say them openly because I thought I had let go and dealt with much of my past. Moment to moment has been another obstacle course to prove I can move through, patience, calm, reasoning, but also understanding as an adult, understanding of the quality of life, the ever changing condition, the knowing and accepting. The language and words I use, how much do I have to give or do in order to be there? Have I got other support networks? Let’s not go there. Am I seeing a therapist? Yes.

I’ve forgotten who I am? I’ve become labels in the system; carer, step-mom, half-sister, full-timer, partner. I used to dream about doing things in life instead I feel tired and under valued and couldn’t care less about the future. I use to be happy with my figure instead I am two dress sizes bigger and feel self conscious and fat. I use to wear dresses and do my hair and now it’s tied back, and I live in joggers and t-shirts. I used to be someone…

One of my close friends said to me once “usually the carer goes first”, how that has stayed with me. Friends have privately told me their experiences of dementia with their families and again what stands out is “accepting they are no longer the person you knew”. I cry when I hear this because I still see the same man as my dad, am I living in denial? No, I understand there will be constant changes. But I hurt, I am in pain and part of that pain is losing another parent and part of that pain is my dad losing himself. 

I lost a part of me when mum died, will I lose more of me when dad goes?

A list of things I have tried to do to help dad;

  • A diary with times of appointments
  • organic food freshly cooked, very little sugar in his bought foods
  • games: snakes and ladders, dominoes (he always wins at this) colouring books, word search, connect 4
  • walking, mosque attendance, classes when they resume
  • signs to remind him of things
  • massages (shoulder and neck)/ gentle exercises
  • encourage him to remain independent and mobile
  • call him daily
  • Cards with photos of recent times/birthdays/people

A list to help me;

  • Sleep is so important (try for 8 hrs/ but don’t be hard on yourself if you only get 6 most days)
  • Speak to him less when I am tired/grumpy
  • See what type of day he is having on the telephone
  • exercise/ meditate / take a bath
  • read a book/ write (I write a lot)
  • work / dance / listen to music / do something I love
  • Ask for support until you get it and if you’re not happy complain (include your MP/Counsillors)

Love and strength to you all out there. Every experience is different and personal. You are doing your best and please love who you are through this process. I am still trying to figure out how to love me.

Post apocalyptic times…

/ Maria Thomas / Leave a comment

Currently we are living through a pandemic, Black Lives Matter has moved prominently to the forefront of our times, global politics has been a daily conversation as much as our work talk and now we are living through a “new normal”.
When lockdown 2020 happened on 23 March, I was still floating from my month’s holiday in Thailand and dreaming of my next holiday, but everything stopped. Everything apart from my day job which got busier, anyone considered a “key worker” their life continued, adapted, and a sprinkle of added pressure and expectation.

Technology was at the top of the list, how do we expand on it, transfer communication on it and we had a Zoom boom. I had heard of Zoom before it exploded into what it is has become today 30 more million users and added online security. I have suddenly become a whizz at online meetings, muting people, trouble shooting and a video editor in the space of three months.

I started to envy those on furlough as having some paid time off sounds great, just think of all the things I could catch up on and all the things I could do. Realistically those “things” were domestic, cleaning, renovating and letter writing. However, in a way I am glad to have been working, there’s something about structure that helps me plan and oversee my days and weeks.

I’ve heard many people say it will be a time to “reflect, slow down and enjoy time with loved ones”. Yes and no. It has been an awful time of disruption for my Dad who has dementia, his routine has been completely wiped, his restriction of freedom has come at a cost, my relationship with him has been wrought with friction. He doesn’t understand that I’m not the one making the decisions on his life but I am carrying them out and therefore I get the brunt of the disgruntled anger. I am deciphering if he’s having a bad day, or he just hasn’t eaten/drank enough or if he’s genuinely having a bad day. 
I am spent, my energy is low, my mind and body are tired from working, running over to make sure he’s okay, calling to make sure he’s eating and drinking and managing life as a step-mum, a partner and all these other labels I/society put on me. I have had more internal grumbles than usual, and my outlets which has been going to the gym, Fightzone or Islington Boxing Club are closed. Pubs will open on the 4th July but gyms are closed. Sigh. This government makes me fucking angry. Is healthcare a priority or is tax on alcohol a priority?

This has also been a time of reflection in many ways, I’ll start with ’21 Days of Abundance’ by Deepak Chopra. I was invited to commit to this and I really loved the journey of self-help. It’s not an easy journey as there are aspects of my Mum I was encouraged to answer and think about the people who really inspire and lift me up; and the ultimate question “what are you doing with your life”, not in those words but I know this is why I took the time and it’s always good to reassess where when one is at during times of difficulty or ease.

I have loads of ideas I would love to execute, lots of knowledge I would love to share and there’s sometimes something inside that stops me. Procrastination, scared, tiredness, excuses that I can always start tomorrow or am I waiting for the right moment? There is no right moment, there is no time like the present and I have to believe in myself that I can do it. But I am tired and there’s the excuse. So, how do I change this? I listened to Brene Brown talk recently where she says “sobriety is your superpower”. Do I drink that much, no but I do drink, could I plan my lifestyle better as much as I plan my work or extra hobbies, yes!

What’s really important to me? When my Mum died over ten years now, I asked myself this question. The answer was live life to the full. I made mistakes and I didn’t really live life to the full. However, Deepak talks about the “space between thoughts”. There is a voice that speaks to me and to us all, it’s that intuitive one that tells us “yes, go for it” or “no, don’t do it”. It tells us many things but we either silence or ignore it. I am getting better at listening to it and much of the time to hear it, I have to “let go”.

Now “letting go” is a difficult concept for me as I am a hoarder and a hanger on. This comes from my family, I can acknowledge that. Emotions, scenarios, regrets that are passed onto you like it’s a burden for you to live with all of your life. I have to remind myself daily that I don’t need to carry it with me and I am reminded of it when i hear of other peoples childhoods. I do not possess the power to change my past, I wasn’t given the opportunities of some and it was an oppressive, restrictive childhood. But I do possess the power to forgive and move on and change the way I feel about it.

It has been so hard in “letting go” all of the childhood feelings of the past in the last five years, my Dad’s ongoing health issues year upon year, finding out I had a half-brother, finally meeting my Dad’s family members. I feel like I’ve been the guilt and shame he has hidden for so many years yet the expectation that has fallen upon me to be responsible for him and his health has no thanks. Dementia brings out the ugly side of my Dad’s personality and all the trappings I felt as a child I am choked with as an adult. Has my mental health been affected, of course, I have been seeing various counsellors. Has my relationship been affected, undoubtedly and my partner is still here for now. Has my life stopped. Yes. I am living and breathing for my Dad. Have I lost who I am? Yes.

The tears, the anger, the guilt, the shame, the resentments have all reared their ugly heads in me and it is hard to quiet the voices of the past. The voices I thought I had dealt with. This is what post apocalyptic times are like.

Acceptance

/ Maria Thomas / Leave a comment

After completing Mastin Kipp’s 40 day ‘Claim Your Power’, I wondered if I would feel enlightened with my “Creator”, ecstatic in the my “action steps” approach to following my goals and dreams; and quit my day job. Was I excited that my relationships with my partner and family were about to elevate to the next level?
I felt the anti-climax of when an acting tour finishes and you know you’re going back to reality, the next acting job hasn’t come along yet and you have to go back to those faces in your regular job which either you dislike or the job is soul crushing.

Do I listen or read these self-development, self-empowering books because I want to find the answer to what I’m not doing right, seeking the reasons why I have not moved further along in life, to listen/read to another person tell me if I’m not “working to my goals once a week, it’s a dead dream”. Is it about my dreams?

I figured through this process it’s about my approach to everything and just like juggling human nature and the personalities of friends or the dynamics of work colleagues; it’s my approach to life.

My dad was diagnosed with dementia earlier this year, I looked at the research to prove to myself I understood the levels, the stages, the ways in which this debilitating condition can take over. It’s a slow burn of fire dying out on a summer’s day, at its height it’s beautiful, powerful and sometimes uncontainable and at it’s low it’s ash blowing in the wind returning to the motherland. What am I doing about it? I’m trying to control it, the doctor is trying to control it and for the first time in my life, I don’t feel unhappy and alone. Is that strange? The support from the NHS has been great, the support from my partner has been incredible.

I’m able to take my Dad to acting classes, memory cafes, dance and fitness classes (with the help of another reluctant family member). We have got him a diary so he can write things in to remind himself of what he’s doing daily and who he’s spending time with.
The biggest impact and stress for me is knowing which are the important parts, hospital/doctor appointments etc. Since my Dad came home from Mauritius in 2014, the last four years have been applying to the council for a home, sorting his pension out, him being diagnosed with prostate cancer and then this year dementia. I wonder if life has it in for me but it’s not me it’s happening to, it’s him. I cry and want to scream and shout at the world “why is it all on me?” and it’s because somewhere along the journey, I have become the responsible adult in all situations, and the roles have reversed.  I wonder how I can put yourself first, stay on top of my health and deal with anymore? I can’t and I have to get on and find the time when I can. It’s not about complaining, it’s allowing yourself to feel frustrated and not beating yourself up for the guilt that is totally out of your control, and out of your hands.

So, back to the book, what has it taught me in isolation to this area of my life, “Acceptance”. A really difficult area to understand in it’s full limited, restrictive layers unless you understand yourself to a degree. “Acceptance” is the most enlightening area of my life right now. I find it difficult because it brings its friends “control” and “judgement” to back itself up every time but it’s my fears of this that has been difficult to acknowledge. Accepting, what I cannot change, the future. But I can change the here and now by looking at it through a different lens. I never thought I’d be talking to my Dad about his “After Care Plan”, they are ask questions, you’ve never been prepared to ask your parents before, “How do you want to receive NHS treatment, do you want to be resuscitated, do you want the doctors to give you all the medications available” and so on. About his Will and what he wants to leave to people, about all sorts, and i am glad to say thank gawd I found out about the Death cafe, because it helps to talk about death openly.

All my Dad can hear when I ask him about his personal life and history is suspicion, and he asks “why? Why is it difficult to see loved ones suffer, it’s because the conflict starts with ourselves, our views, opinions, judgements, influences. The reality is he cannot change, he’s not a man that understands how to to talk about his emotions and never really understood others. He’s complicated and has a limited view of the world because he doesn’t really engage in conversation to know who people are or understand the world around him.  So, if anyone had to change, it was down to me, I don’t want to be the dutiful daughter anymore, I don’t want to pat myself on the back and say “I was there when he really needed me”. I want to be more than this, so I realised it was time to create new memories, however short lived they might be.

I am creating new memories of fun. I never thought of my Dad as a scared, frightened, and stressed man knowing that life is coming to a close. Maybe we never really think about the time when our bodies will start to close down, and stop working in the way we hope it always will. How do you admit, you can’t remember people, places, things? How do you talk about death when you’ve never really discussed it with family?

I am really lucky to still have my Dad, he isn’t an extreme case at the moment, he still remembers, still gets about, still cognitive. I have to find ways in which he can answer questions that are too much for him all at once. I sat with him yesterday whilst putting on a TENS machine for his achy muscles and played some music from different periods of our lives and showed him old photographs. A simple action but really worth putting the time in. I recalled that all through my life at home, two of the most prominent memories I grew up with was music and photo albums. Dad had created those memories for us and now it was time to remind him of those memories and create new ones for him. It is time to have fun with him whilst I still can and because whatever time I have left, I don’t want it to be about appointments, doctors, medication and duty.

If I only had today…

/ Maria Thomas / Leave a comment

Today I came home crying, I’ve been here before, losing one parent was difficult enough, not knowing how long it would take, the journey it would take and how Cancer would play out. This selfish all consuming, all devouring disease with no inhibitions or care in the world just an egotistical swipe left ghost of a figure.

Why did I cry? The next part of the journey is a different equally challenging one, Dementia. A debilitating, short term memory swiping not quite disease. Still a condition that is labelled with stages from mild to essentially “no hope”. Still not answering the question, “why did I cry?”.

Gratitude – that  I had this moment today? Grateful that I had a day with my Dad?
Self-congratulatory – pat myself on the back because I’ve done my duty and spent some “quality” time with my Dad?
Guilt – that I didn’t spend enough time with my Dad?
Relief – that if anything happened between now and tomorrow, “at least I had today”
Sadness – that I wish I could have seen the signs earlier and spent less time frustrated and angry and more time patient and understanding?
Fear – that I won’t have anyone who will love and care for me in the same way if anything befalls me?

Did I cry because every time I’m there for my Dad, he says “sorry” for taking up my time, “sorry to disturb you”. I never make my Dad feel guilty and boundaries have to be made clear, but it makes me sad and angry to think why he has to say “sorry” and if others have made him feel like a burden or a bother.

The real reason is, I don’t know why, maybe because of all of the above things, maybe because I hate this fucking life with all it’s unfair, injustice shit it places on us. Maybe I’ve had too much wine (two glasses), “maybe it’s because I’m a Londoner and I love London town…”

I chose today, I chose to spend “quality time” with my Dad because in recent years, “quality time” has meant council visits to get him a home and benefits, hospital visits to find out he has Prostate Cancer.  It has meant finding out accidentally that I have a half-brother but with so many questions that will be left unanswered for my entire lift-time. And more hospital/clinic visits to find out that he has dementia and this is the next step.

Did I choose this life? Did I choose to have these challenges in my life to make my soul a more experienced, wiser being in the next life?  To develop to a Nirvana level in this life? How could I have chosen the pain, the suffering, the guilt, the worry, the stress; how? Because I am sure I would have wanted to be in the ice-cream guilt free zone of wealth, wisdom and ignorance, no?

I know I have this immense capacity to love, to give, to care and energy to encourage, but when I walk away, I am sometimes inconsolable with an undeniable outcome. Why was I never prepared for death or just the pain and endurance that one has to go through with life’s incurable toxins. These are not triggers from my childhood, these are not previous experiences before a certain age, this is fucking real life adulthood and it’s shit.

Do I sound ungrateful? Maybe? I sound fucked off with the cards I have been dealt with and I want to throw my toys out of the pram and rant and rave at how unfair it all is. But as most people I know say “it is what it is”. Fuck those words, it seems cold and calculating, a slap in the face of no mercy or prisoners to be found here. Take it or leave it? And I have to accept the inevitable, fate of destiny.

But fate doesn’t have to be a waiting game, I look to do everything possible to enable, to give advice, to make sure my Dad can do everything in his power, while he is capable to slow the inevitable down. While doing this, I have missed on two years of living life with him, having fun with him, day trips out with him, drinking with him.

Have I been selfish in thinking “Well, I was doing my duty as a daughter, at least I was there when he needed me the most, all the appointments”. Have I let my ego get in the way to think, “I’ve said all I can”, given him opportunities and now I can get on my horse and ride off with the knowledge that “there was nothing more I could have done”. I’m an absolute idiot if I think that.

I love my Dad and I don’t want our last months or years of memories to be sat down explaining to him that he has to think now about his funeral arrangements, his Will and whatever “end of life” endeavours he needs to consider. I want to have fun with my Dad, I want him to have fun with me. I don’t want him to get all stressed with me because I’m always talking about the seriousness of every situation.

Today I took him to three of my favourite special places in North London, spaces that make me feel like home never did, peaceful, a space to think and feel/be creative EZ and Moss. A place that always makes me feel like I’m part of the family Mento, Coffee and Flowers and a place “where everybody knows your name” Oak N4

The roles in life have now reversed, it’s my turn to look after, take responsibility of my Dad.  I’m glad I had today and I need to make sure there are more days like today.