Dementia

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.

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