Letters to my Mama… part 4

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Dear Mama,

This morning your delusions had the best of you, when I came in to say Hi you were so sad. I sat with you and asked you what was wrong, with your beautiful eyes looking up at me, you whispered ‘I think I have to go away.’  I reassured you that you were safe with me, that I loved you, that you could stay here forever. This pleased you, but only for a moment. This disease crept back into your brain and stole the last 30 seconds from you and you were sad again. I kept telling you that you were safe with me, I kept telling you I loved you, those few moments when you knew that are heaven to me.

We started our day, you were distant from me, I missed you. I wanted to hold hands, to tell you secrets but you weren’t interested. Instead you preferred the comfort of your music. You sang with gusto and I smiled at you, you were content.

Our day was filled of ups and downs, sorting, sharing photos of times gone by, smiles, songs and lunch. By the time we started to head home it was mid-afternoon, as we stood next to the car ready to get in you looked as though you wanted to cry and scream.  I came around the side of the car to see what was wrong and you had wet yourself.  I told you it was ok, you were ok and that I loved you. This was the second time it has happened in public and I’m so sorry that it is happening to you. I kissed your forehead and told you it was ok, I got you in the car and you had tears running down your face. I wanted to cry with you, cry at how unfair it is that you have alzheimers. I wanted to reassure you that it was ok, I wanted to hold you and make it better for you.

We got home and I undressed you, showered you, you could hardly move or do anything for yourself. Mama, I want you to know that, that’s ok.

I fed you dinner, I held your water to your mouth, I put you into bed and told you I loved you.

Mama, I will always be here for you. I love you.

K x

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A few helpful tips..

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This time of year is a hard time for families caring for someone with alzheimers/dementia.  Services shut down or go to a skeleton staff, family and friends go away for the holiday season, it is hot, tiring and the days are long. Carers are often exhausted and will look that way. I know this from personal experience.

Alongside caring comes a sense of inadequacy, self doubt, self loathing.. Am I doing enough? Am I enough? Why aren’t they happy? What am I doing wrong? On a daily basis I am plagued with these questions and on a daily basis I battle a demon that says I am not enough. I work hard to fight those demons off but sometimes it all gets a bit much. With the added stress of being in Martha’s company 24/7 and seeing family and friends more frequently it becomes harder and harder to not only deal with that feeling of inadequacy from within but also the pressure that society puts on you around this time of year to be happy, cheerful and oh so merry.

My most hated question as it comes to social gatherings with families and friends is “why don’t you put her into full time care?” at least every other week I get asked this anyway but as we near the end of the year it becomes more frequent and comments are made more offhanded.

So as a carer on behalf of carers I urge you to be careful with what you say to loved ones during the holiday season. Hopefully here are a few helpful tips

  1. If you want to have an open and honest conversation about putting a loved one into full time care please let your family member know that is what you want to do, schedule a time and come prepared. Don’t ambush your loved one when they might be feeling vulnerable and unprepared, Christmas day is not the time for this kind of comment or conversation.
  2. Don’t make an offhanded comment without any follow up, it isn’t nice to be made to feel you aren’t doing a good job, imagine this when you say “why don’t you put them into care?” is actually..

    – why don’t you put your children in boarding school?
    – why don’t you get a divorce?
    – why don’t you quit your job?
    – why don’t you put your pet down?

    Imagine someone saying this to you and then walking away?

  3. Please don’t point out how exhausted someone looks, it is a tiring job that around the holidays becomes a 24/7 job. Instead maybe offer to come over for a couple of hours or have them stay with you for a few hours. Drop by with a cooked meal, mow their lawns, bring in the washing and my favorite.. bring coffee and/or wine and relax together.
  4. And lastly, let your loved one know that they are doing a great job!

    I hope that this helps in some way.. Happy Holidays! xx

Letters to my Mama.. part 3

I found this letter today I had written in January 2012 to Martha.

Hi Mum,

I miss you. I’ve been reading a book on Alzheimers and I am sad that you have to go through it. But I love you and I know when you forget me I’ll still love you and you’ll still love me. But that’s a long way away. Remember I’m always here when you need me and I might get frustrated sometimes but that’s because I’m scared. But every day I get braver. I put in this picture of the taj, I’m glad you stayed with me the night before, thats when you explained what is happening to your brain, we cried together then because we both knew one day we would lose each other but we know we will always love each other.

Kyrin xoxo

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Today I learnt..

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I sat at a table today surrounded by greatness, I felt child-like and small, surrounded by lives that have been lived for more than 60 years. I sat and listened as stories and memories were shared like currency and I was envious.  I was envious because I want this but I must be patient; my time will come when I too sit at a table of old souls and share my memories and lessons of life.

I sat and listened as your lay your life in front of me, I was silenced by your words, not because I was scared, hurt or sad but because the force in which power emanated from you was so powerful it left me speechless. Today I learnt many lessons from you, I listened, I absorbed. I wasn’t silent because I had nothing to say, I was silent because I was eager to learn.

I listened today and I learnt about truth for the first time in my 30 years. Isn’t that a funny notion to finally learn the meaning of truth at 30?  Today you taught me that there are two different truths to live by, one is the absolute unwavering truth. The actual events past/present/future that cannot and will not change no matter what you do. The other is the truth that sets you free. Today as I drove home I ruminated over the truth that sets you free. The truth that has the power to change your own world by believing in it. The truth that positivity exists, that negativity is harmful, that too much sugar is bad for you and that death is eminent, but the biggest truth I learnt; the truth that enabled me to walk away with a smile was the truth of true gratitude for life.  Today I will not take another day of my life for granted. Days will be hard but I already know that, today you gave me the gift that my life is valuable.

I listened to you and watched you today, the words and wisdom you wanted to impart on your granddaughter, I watched her and wondered if she knew the gift that she was being given in this moment, I wanted to whisper in her ear, take the lesson now, take it now and blossom with it because it won’t be until you are my age that you will know it’s true value.

I sat and listened with open heart and open mind today.  I felt honored that you shared your final journey with me, even though this was not the last time we will meet, it was with such pride that you shared with me how your body would leave this earth and whilst I was struck by a profound amount of sadness I was filled with love, that you as a woman I knew only as a child was speaking to me now as an adult and sharing with me the most intimate of details.  I watched as you described your final moments on this earth, I prayed silently that they would not be soon but as you explained everything to me, the love of your life oozed from your body.  You spoke so fondly of yourself, so kindly, so highly.  We were speaking of death and yet I was envious.  I am envious that you know how much you are loved.

I, as a woman of nearly 30 am still learning, I am still in my infancy of emotional maturity, but today as I listened, you spoke to me, I listened as a woman to another woman who is the greatest inspiration of my life.  I listened with a type of lust for life as you shared with me your lessons, maybe you shared them on purpose but I think perhaps they were always there I just wasn’t listening properly.

Today I learnt lessons from you that I was not expecting to learn.

Today I learnt the meaning of truth, pride and love.

Today I learnt to listen.

Thank you.

K x

Ramblings of thankfulness

Over the past few days I have seen or been reminded of how fortunate I am, and most New Zealander’s, Australians, English.. Well just how fortunate the western world seems to be.  Here in New Zealand we are not experiencing war, serious drought, poverty that can’t be solved, no one I know in New Zealand has experienced the true meaning of hunger, by this I mean days, weeks without food.  Currently our greatest debate is about changing the flag (my personal opinion is that this is a waste of money, but someone voted for John Key, so all is fair? Right?) and whether or not we should let Chris Brown into the country. So as I sift through facebook and see all this tragedy unfolding, war, refugees, shootings I am reminded that I, in my warm house, with a fully stocked fridge, a car full of petrol and gym memberships galore am pretty darn lucky.

Then Martha gets home and I am reminded once more that I am probably the luckiest person out (right now).  I ask how her day was, in the 60 minute drive home Martha has completely forgotten where she has been.  She does her ritual of bathroom, tea, fruit and sitting down for the afternoon. We make small chat, which by the way, if you know me, I am terrible at and we have a cuddle. Then I get a whiff, she needs a shower. When you have alzheimers you don’t only lose memories but you start to lose the connections between body and brain. The signal that goes from your bladder to your brain fades and on it goes.  In some it is quick and I know carers who completely care for their person, they toilet them, shower them, change them, I am thankful I only occasionally have to help Martha have a shower (we also get assistance from an agency).  So I shuffle Martha into the shower, stripping her, helping her in, I soap her and wash her, shampoo her hair and condition it. She stands, turns when I tell her to, covers her eyes so she doesn’t get soap in them and I turn off the water when it is done.  As I help dry her I am thankful that she is ok but also that I am able to care for myself. I don’t need constant reassurance, I don’t need help to shower, I can prepare my own food, I pay my own bills.

How hard it must be at the age of 67 to be so dependent on another being just for survival.  She follows me needing me to show her where her clothes are, I have laid them out. I learnt early that if left to her own devices she will find clothes that aren’t so suitable, we sit and chat while I dress her, underwear, pants, bra, singlet, shirt and socks. I kiss her hand and brush her hair. I dress her like she is a child but I am her child.  I find myself feeling thankful that I am able to do all these things myself.

I remind myself that this isn’t the hardest thing in the world, but also that everything is relative to each individual.  I tell Martha about my day as I make her a cup of tea and she smiles at me, I wonder if she knows how much she has lost or perhaps for her this is now her normal.

Love, K xx

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Letters to my Mama… Part 2

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Oh how I miss you Mama. The other day you gave me a big hug and said you loved me very much. My heart blossomed with love because I miss you knowing who I am. We smiled and held hands but very quickly this disappeared as your delusions took over. In those few moments I wanted to tell you so much about the world. But what I craved the most was the knowledge that I was your daughter and you were my mother.

I talk about the difficulties of being a carer, how taxing it is, how hard it is to care for you sometimes but I seldom talk about how much I truly miss you. I miss you so much at times that I feel as if my heart has turned to dust. We still have our things, you still rub my back, you say things like “I always do this for you and what do you do for me…” it darkens my day; I want to scream at you this isn’t fair! I do EVERYTHING for you. But I enjoy the tenderness and the reminiscent behavior of childhood as you stroke my hair and rub my back. I feel like I am constantly mourning for you, never knowing when Alzheimer’s will take a little more of you.

Sometimes you ask me where I’m from. I reply, Tauranga. You ask about my parents and I say my Dad passed away and my Mum is very sick. You look at me with sadness and tell me I should spend more time with my Mum, I hold your hands and whisper to myself, I am. I want to cry and weep. I want you to know I am still here.  I want you to know I exist.

I want to tell you how tired I am. I am tired of pretending that this is normal, that I am fortunate and that I am ok. I tell myself these things to get by. I write about how grateful I am that on some day in some week you remembered I was your daughter but inside, brewing inside I want to scream this isn’t fair. Why should I be grateful for something so normal? But I do, I cling to those days as if it were my last breathe, but days are no longer days but only moments. Those moments are so far and few between that I wonder when will the last moment be.

You are in respite at the moment, I want to bring you home and not leave you there. When I visited and you looked at me and said “am I coming home now..?” I smiled at you and kissed your head and said, ‘soon Mama. I will come get you soon.’ As hard as it is, sometimes it is harder to be away from you. I miss your connection to me I miss you knowing me when you are with me and that is hard, but when you aren’t with me I just miss you and I don’t know which is harder.

K xx

The stuck-ness that is life..

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There is little reward in being a caregiver of someone with a degenerative neurological illness. In fact most of the time it is draining to have to give so much. Lately I have been down, depressed with wintery blues and can’t get out of the funk of winter. I feel helpless and hopeless even when things are not. I can recognize this, seek help, take meds, make a gazillion cups of tea and still I will be stuck in the stuck-ness that is my life. I do things, I get out, I go out, I laugh and act like a normal person and then as day turns to night I slink back to my real world and am once again enveloped by the life of being a care giver. I feel sad and lonely even though I am seldom alone. Then a small tiny miracle will happen, not from friends dropping by, phone calls, meals out, flowers (although that is mostly what keeps me going) but Martha comes back. For the briefest of moments she is happy and we are happy together.

Days ago on a grim day with water pouring down, dark skies Martha wanted or perhaps needed to get out of the house. She does not often ask for much. I think as words leave her she loses the ability to ask for things, I demand answers of her and I shouldn’t but I do. But on this occasion she says “are we going out?” I don’t want to go anywhere. But to honor Martha’s diminishing capacity to ask for things I embrace what Martha wants. If she wants it, we shall do it. So I get out of my pajamas, which I have been in all day and we head out into the pouring rain, huddled under a tiny umbrella and into the car.

Where do you want to go?

She replies, jovial; I don’t know. We can just get a drink or some kai.

What do you want to eat?

Oh anything

We pull out and for the first time in a few weeks Martha looks accomplished, she has made an achievement and for that brief moment she feels victorious in her ability to persuade me to go out. We make repetitive chit chat. The weather is bad, it is raining so much, it is so cold. We repeat this over and over until we get closer to somewhere with food options. I’m thirsty Martha says, ok well lets get a drink. We carry this on until we parked. She smiles and it is bright and happy and enthusiastic. I am pleased, I am unburdened by her burdens and there is no more talk of people stealing her things, hurting her people or trying to capture her. She is content and so am I.

I take a moment to be grateful, I take the moment to thank myself for being able to do this for her and for me. I am grateful that for the first time in what feels like forever we have a moment of happiness to share.  I tuck this into my memory bank as we order dinner, I watch in wonder as the world passes us by. We look like any other Mother and Daughter dining and yet we aren’t. Every 30 seconds or so I answer Martha’s questions, ‘we are in Auckland, we live here, you live with me’ I follow that with a reminder to stop talking and start eating. ‘I am eating..’ she replies grumpily, frustration is creeping back in for both of us. We finish our meal and head back to our world.   I close my eyes as we settle in for the night, was it just a dream? Sleep finally comes to steal us both away and the next day comes far too quickly and we start all over again.

Love,

K x

‘If you resist it, it will be cruel to you. If you let it in, it’ll be magic’

The kindness of caring

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Photo credit: Coco’s Cantina FB page ❤

Being a carer takes a lot of patience and kindness.  I, like many other full time carers seemingly do not have a choice.  I never volunteered for this position of full time carer, it never even entered my mind when Mum was diagnosed with early onset alzheimers.  In the early days following the death of my Father we looked at various homes and care facilities for Mum to stay in.  I selfishly (or not so) wanted to return as quickly as possible to my old life.  To my home, my job, my friends.  I did not want to be burdened with the responsibility of carer.  As the days turned to weeks, and weeks to months it became more and more obvious that I would be caring for Mum permanently.

So after about three months of backwards and forwards, ups and downs we began our journey together.  First moving to Christchurch and later relocating to Auckland.  It was tough and long and hard, like many things that I seem to do as of late but in the end we have ended up in a pretty good place (now).  As many of my readers will know we have had our fair share of struggles.  I have suffered through some deep depressions, some amazing adventures and been in limbo for the past two years.  I am constantly reminded of how cruel this world is and often reminded of the kindness of others.

This week as we had various carers come in and out of our lives I was reminded once again of how much kindness it takes to be a carer.  To step outside of your own family and care as your job. What a wonderful service you can offer to the world, yourself.  As Martha’s personal carer politely knocked on the door on Thursday I began our morning ritual.  Up, breakfast, showers, make the beds, out.  Martha’s carer gathered her things and helped her out of bed and into the shower.  She washed, dried and dressed Martha, she made her bed while Martha sat on the couch in the lounge and then as if she was caring for her own Mother, this woman, who I do not even know by name sat with Martha, she held her hand and asked if she could do anything else for her.  Martha politely declined anything else, this woman who was so gracious and polite kissed Martha on the forehead and said “goodbye dear, have a blessed day.”  In that one and simple exchange of kindness I was moved by this woman; by her love for Martha even though this was the first time she had met us.  Her kindness was palpable.  We have many lovely people in our lives but our nurses and carers are some of the kindest most wonderful human beings I have the pleasure of having in my life.  To all of those who are carers; many blessings to you.

Remember to be kind x

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A letter we received today from our carer because we weren’t at home. She is so LOVELY xx

The cost of caring…

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The reality of caring for someone is that it is not only mentally and physically draining but also financially draining.  It is a constant battle for me to go up against Doctors, the ADHB and providers to get a smidgen of support, it has taken almost a full year to get the support listed below for us, some of it is a result of me having had a breakdown.  You will see we do get support now for Martha, but as a carer I get no support to look after my mental wellbeing.  I do not attend any support groups because none are available to me and when asked by a Doctor or social worker about how I am and I choose to speak openly and honestly about how hard it is to care for Martha I am usually met with “well maybe you should look at putting her into full time care..” I pay for my own counseling to help me deal with the issues of being a carer but all complete honesty I punish myself a lot because I don’t have the emotional capacity to deal with the loss and grief I experience as a carer to my Mama.  I experience periods of being manic as well as deep depression.  I see my doctor and counselor often and take care of myself as best I can, sometimes through the help of medication and sometimes not. I have a great support network of friends, family friends, family, trainers, gym buddies etc to help me along the way. But it is a very lonely journey.

The financial cost;

Fully funded care (weekly) = 1.5 hours with a community support worker. 1.5 hours per week of personal cares such as showering
Partially funded care (weekly) = 4 days at a Day care programme (approx 6 hours per day). Total cost to us $48 per week
Fully funded respite care (annually) = Nil
Partially funded respite care (annually) = 52 days. The total cost of respite is approx $181 per day this is how it is broken down.. $67 through carer support, $84 through ADHB. Total cost to us $30 per day.
Fully funded in home respite care (annually) = Nil
Partially funded in home respite care (annually) = Nil
Cost of in home respite care per 24 hours = $120
Cost of a single doctors visit = $35 – $40
Cost per script = $5
Funding I get towards counseling = Nil
Support groups I attend = Nil
Supported living payment I receive as a carer = $264 per week
Support from friends and family to care for Martha = PRICELESS

What I hope and what I am aiming to do is to get more supports for carers, I use this blog to be heard, to vent my frustrations, to praise myself and to give myself hope. I also think that we need to have a society that supports us in our journey to do that as well.  I want to be heard, listened to and valued by my community.  I’m not asking for praise but just the opportunity to share the heart ache as well as the joys of doing what I do.  Im sure that there are organizations out there that provide services that help, but after almost a year of being in Auckland I have not seen nor heard from them so I don’t know if they truly exist.

I write this and think that maybe a lot of people will say, “maybe it is time for full time care.”  It’s not. Trust me.

K x

The turn…

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I woke up on the wrong side of the bed, I was agitated as soon as I was awake.  Martha was forgetful, not unusual but because of my agitation more frustrating.  She stepped by my door every 1 – 2 minutes saying “good morning, are you ok?”  Each time I would repeat “morning, yes, time to get dressed now.”  I tried to say awake, alert and not annoyed.  I made my way out of bed, bathroom, dressed and tidying the house.  I had endured for the fifteenth time “morning, are you ok?” I tried to be honest with Martha. “Look, I am getting a bit frustrated Martha, can you just get dressed” This would start another trip to the bathroom and the cycle of bathroom, shuffling, “morning, are you ok?” would start again.  By the 20th time it was like fingernails on a chalk board.

“Martha” I commanded. “Either get dressed or go to group in your PJ’s” and thus the turn happened.  I wasn’t aware at first, she shut the door to her room, I assumed for privacy, she emerged semi dressed but as soon as she looked at me I saw the agitation in her.  Grinding her teeth, sullen, angry. I, in my petulant frustration had woken the beast.  I made breakfast and thought if I just hurried us along she may forget she was agitated by me.  I stood shoveling my breakfast in my mouth and then moved us into the car.  I turned on music and did my best impression of being happy.  In all honesty I was so grumpy, irritable and tired from this mornings repetitions.  On our journey my agitation only grew, the question no longer “are you ok?” now “where are we going” what felt like for the 1000th time I said “to group, you are going to group and I am going to work.” Less than a minute later the nails on blackboard were back.  As we approached Lavender Cottage I felt a sense of relief wash over me. Thank goodness, for the next six hours I have reprieve.

We parked and I knew that she had turned completely, I was now the enemy.  I coo’ed at her, trying to entice her with my love and soft voice.  “Martha, let’s go in” I anticipated her next move and watched as her fists clenched, she would either strike out at me or throw something, but whatever she did do, she would then get out of the car.  She threw a bottle of water, by the time it reached where I was, I was no longer there.  She was out of the car but I was quicker.  We danced on the driveway, a familiar dance of love and hate.  I knew the steps and Martha didn’t. We danced until she grew tired and I was able to move her with my body. Arms out-stretched on her lower back, guiding her towards the gate. I swiftly opened the gate and pushed her in, the air rushed from my body as the weight of the world lifted. Six hours I thought, six hours of freedom.  By the time we reached the staff, a mere 20 steps Martha had forgotten our dance.  I said goodbye and turned quickly, “when will you be back?” the nurse responded first “you’re going home on the van, Martha.” I smiled and left.

Six hours until I have to dance again.

K x