Remembering

It is Thursday the 26th of June. I sit at the home of my parents.

I thought about writing this weeks ago,  not knowing if I should ‘explain my situation’, but I now do,  in the hope that anyone else who reads my ‘blog’ may be helped in some way. Anyone that they may know that might display the symptoms of BPD can then hopefully try and receive the care and attention that they need.

4 weeks ago (almost 5) my youngest daughter (27) had a ‘major meltdown’ and as a consequence, my life spiraled out of control, as did hers. She lived with me and my partner Mr. S and also her boyfriend.

Some of you have emailed and I have explained my situation, or a brief outline.

I write this now, for any parent or family member who has a child/teenager or adult still under their care, or that they may know, who may have been diagnosed with depression, or with bipolar/anxiety, that there maybe another illness that it could possibly be.

One that up to 7 months ago, I had never heard about. It is called – Borderline Personality Disorder, or more commonly BPD.

Borderline can be closely linked with also having depression, bi-polar or anxiety.

My daughter K attends the DBT (Dialectal Behaviour Therapy) Centre in Melbourne. This Clinic specialises in using a Modified Cognitive Behavioural Therapy treatment.

Many therapists won’t take on patients with BPD as it is so complex and frustrating and simply hard work.
Martha Linehan  http://linehaninstitute.org/ introduced this style of therapy and only recently was it then public knowledge, that she herself suffered from BPD.

It is a confusing and frustrating mental illness, the patient suffering from extreme sensitivity to all matters, to the point where emotional outbursts, sometimes will result in violence to others or self harm and or suicide of the patient.

This is her life, my life and that of my family. I was guilty. I did not understand, I did not read up about it, what it entailed, how severe it was. I learnt the hard way.

There are 9 indications that a person has BPD. For those that wish to read a little on what BPD is –

http://www.medicalnewstoday.com/articles/9670.php

For the past 4 weeks I have not lived in my home, spending the first week with my eldest daughter and now my parents.  My partner had to remove himself from the situation on that terrible night, moving elsewhere, but we are trying to keep our relationship together. I am now in a position where I have to sell my home, as my income is limited. I cannot live with K nor can she live with me.

This illness is described as a ‘relationship killer’. Or the ‘love/hate relationship’. Carers and or family members having to walk on eggshells, for fear of triggering their emotions.

There have been factors/incidences, that I think/feel have manifested in her, resulting in her diagnosis of BPD, which I cannot go into detail about.

She, displayed to the outside world a happy, confident young woman with a great sense of humour. Underlying, however was festering BPD.

I love my daughter with every breath that I breathe, but I cannot live with her any longer. I have so much guilt, as a mother who does not want her to self harm or god forbid even contemplate suicide, because she feels she cannot cope with the ‘normal’ world around her. Thankfully, her therapist has not seen any signs of this.

I have spoken to others on WordPress who are sufferers, I have joined a monthly support group to help me try to connect once more with the daughter that I love. I read and read all that I can, but because her ‘personality’ can jump from one extreme to the next, managing or understanding what she suffers is extremely difficult. It is not like bi-polar where there are extreme highs, then extreme lows. BDP sufferers experience this continually… the virtual see-saw.

From what I have learned or more so witnessed with my daughter, is we can compartmentalize our thoughts/actions at a given time. She/they can not. What we may ‘spread over’ a day or a week, she/they have constantly circling in their minds. Lists are written to try and help her cope daily, lists which she would always read out loud to me, of what she had to do each day, in order to get some ‘peace’ in her mind. I would be constantly contacted by text, if I was out, with K advising me what she was doing next.  Still, even though I knew this wasn’t right for a girl of 27, I did not look into it further.

Jobs were plentiful, as BPD sufferers sabotage jobs they are in, even if they are enjoying it. They have no self worth, also feeling that others should handle their distress.

The family or carers, must ‘cop the tirades’, the abuse, only when it becomes violent must we walk away from the situation, in order to protect ourselves, or them.

It is distressing, it is heartbreaking, but I have been advised and read that it is to an extent curable.  It can take many years to do so however. The patient must learn the skills required, not to be triggered by what others say or do, or events that they experience, to cope with their own instabilities. The recipient must also learn strategies not to evoke, upset and try to understand what they are experiencing.

I am doing what I can, but as a parent I am ashamed to say that I am limited. Selling my home/her home, in order for me to survive, plays heavily on my heart as her mother and my emotions, as BPD’s have a great fear of abandonment (even if they aren’t being abandoned) are understandably erratic right now .

I live with mum and Pop and as many of you know, mum has dementia, so I have taken on the role of full time carer for both of them for the time being. When I move I will also be an hours drive from them, which may not seem much, but I have always been within minutes of them.

But this isn’t about me and how I feel, or what I’ve been going through.  It is about an illness that not many have heard about, or are able to comprehend. To an outsider, the BPD is just acting like a ‘spoilt brat’, seeking attention, wishing to manipulate, but this is not true.

Their process of dealing with emotions of any kind is vastly different to those who don’t suffer this.

For weeks, this has consumed me, to try and do the right thing. She has no where else to live other than my home, which I cannot afford to keep any longer. This is my dilemma, being torn apart, not wanting to lose my partner of 6 years whom I love and knowing what I can do,  that won’t see my youngest baby in the streets. Public housing is pretty much non existent here. Private renting is available, but expensive. Crisis housing not an option, as she and her B/F would have to move from one place to the next every few days and I know she would not be able to take or cope with this, nor do either of them have a steady income.

I am in discussion with her father and I talk constantly with my friends and I can only hope we can reach a solution and soon.

I am now seeing a therapist, as I feel as if I have been drowning, but my daughter K is the one who is drowning the most and I will do whatever I can to ensure that she is cured of this terrible illness and able to live a happy and well adjusted life in the future. That is all any parent wishes. This is what I wish, as she feels that I do not love her or support her in this.

So, in closing, I can only suggest that you seek help from your Medical Practitioner, if you feel that you, or someone you love or know, maybe showing signs of BPD.

Help is out there, it is a long road that I travel, but an even longer road for my darling ‘baby girl’..

PS:  I thank you if you have read. I thank all of you, those that read me regularly and knew nothing of my situation and yet have shown and given support, love and encouragement along these weeks, which to me at this juncture, seem like months.

 

Morning has broken

Mum & Pop having a laugh

Mum & Pop having a laugh

Morning breaks like every other
Opening eyes, the darkness that enveloped
the night remains, winter sits
a giant umbrella covering the light

A different routine, collect the paper
with must read news unwrapping the
squeaky plastic that holds it tight
a baton without a race, thrown across the grass

Prepare breakfast, bacon, tomato, toast, fine
cut shallots, tea piping hot, table set
His walker first with him behind, the eldest but
always the first to rise, as if to squeeze
in as many waking hours

He smiles, tucks in, asks if I can stay
…permanently
I smile, shake head, no, that is not possible
my Pop and kiss his beautiful forehead
knowing part of me would

Then she awakens, the kitchen clock moves 7:20
Breakfast is ready I whisper, with morning voice
yet to gain strength
She sits, she eats and then as every morning
she transforms to the little old lady in
Mary Poppins, feeding her birds

copyright JMTacken 25.6.2014

This photo was taken over 2 years ago, mum hates it, as she says, it looks like they are catching flies.

Outside looking in

It robs her
of the woman that she was
and we can only try to
help this new world in which she lives

It clenches her
with a power unforeseen
dragging it with her, along its path
where nothing seems the same

It challenges her
to find a place where she’s content and
those who love her, can comprehend

It leaves her
with unanswered questions
those she’s asked, yet knows not if she has

It punishes her
for growing old, to deal with feeble body
now of mind

It confuses her
a need to fight or not
or is she simply unaware

It damages her
the mother that I knew, where her
imagination plays recycled tricks

As she stares into the distance
forgetting questions that she’s asked
Discontent at routine change
Scared of what once was familiar

Woman once strong
guiding, caring, nurturing, loving
She is still there …somewhere
not knowing that she hides
from the world she knew

img012

Mum

Mum

copyright JMTacken 14.6.14

 

Sharing with

http://solothefirst.wordpress.com/2014/06/12/writing-prompt-alzheimers-disease/

The Reception – concluding my chat from Saturday

as I seem to be in chat mode still.

I tried to write this in poetic form – but struggled.
After my nephews wedding yesterday this is how the day and night panned out.

At first there was reluctance, the day had been very tiring for both mum and Pop as they had to do quite a bit of walking around the park. Later that afternoon, Pop phoned saying they were exhausted and didn’t want to go to the Reception. I pleaded with them to try as they had missed their other grandsons wedding (as dad had had a fall). Within an hour Pop phoned back saying they would go. Mr. S an I drove to pick them up and took Pop’s walker to make it easier for him.

I held mums hand walking up the slight inclined pavers to the building, she was unsteady on her feet. Mr. S saw to Pop. We got in the lift and went upstairs. Greeting everyone with the rest of the family so happy that they were able to make it, we took our seats.

Meals were served, I cut up Pops and got a spoon for him to eat it, as he has trouble with a knife and fork, due to his shaking.

I was sitting opposite him, with my youngest nephew’s new bride ‘Em’ (who is pregnant btw – so I’m to be a great Aunty in September..oh no wait August) as low and behold my nephew who got married yesterday, his bride ‘D’ is also pregnant.

As I watched Pop struggling to get the food into his mouth,  the tears started, so I got up and went outside, followed by ‘Em’in hot pursuit. She gave me a hug, with me blubbering how hard it is to witness them like this.

Back inside and under control, the music started playing. Mum loves dancing, has complained for the last few years how she hasn’t been able to, ‘G’ my ex was also there with his wife (we have been divorced for over 15 years and his ‘new wife’ is lovely) we get along very well and I still have quite a good relationship with my ex.

I got up to dance and went around to Pop and said “Want a slow shuffle around the floor with your daughter”? The look in his eyes, almost started me crying once more. I helped him out of his seat and we walked slowly to the floor. We didn’t waltz like we used to, we didn’t do the polka or rock and roll. We held hands and I slowly moved around with him. He said “Ginger (my nickname) what will I do without you – thank you”. He didn’t see my tears behind his shoulder.

Then I looked up and my ex had asked mum to dance and she was in 7th heaven, laughing and getting her groove on like she used to, but a bit slower pace. She actually surprised me how well she did. So ‘G’ danced with her through 4 or 5 numbers and my sister in law came up and danced with me and Pop and it was beautiful.

The night ended about 11 as they were exhausted and we drove them home. I undressed Pop and put him in his pyjamas…another big hug and a thank you from both of us, for them being able to go, for me helping him and dancing with him. Mum was still on cloud 9, as she had missed dancing so much and was so happy that I persuaded them to go. They were happy, I was happy they could go and that I could dance once more with my beloved Pop.

In case you haven’t met my ‘Penguins’ before the below are photos of them 4 years ago at my eldest daughters wedding. Now Pop has a grey Santa beard and they don’t have quite the same sparkle in their eyes now, but they adored and I need them as much as I need to breathe.

Pop

Mum

Oh and they have their 62  63 year wedding anniversary tomorrow xxx

Mums
x

Chat time – the good the bad and the ugly

Perhaps if it were a full moon last night, I would understand my mood yesterday. Alas it wasn’t, but mood swings strike at even given moment with me. I wonder if others are the same?

I wasn’t prolific in my writing, I thought I would save you all from my moaning and groaning, when there are others far worse off than I.

Last Saturday I took my penguins to a funeral – Catholic ~ one and a half hours of workout, sit,kneel,stand. I am not religious but I stood when was required as I do not mock or disregard other peoples faith.

Pop and mum sat as it was too much for them to stand each time and pop was having a particularly bad day walking and on his legs.

There was one amusing incident, when the priest rang the bells, mum tuttered loudly, I asked what was wrong, she answered someone has their mobile phone on….ok bless.

As I struggled holding mums hand and onto pops walker, so we could walk up the slight incline to see the wife of the deceased (a friend of pops for 40 years) dad started to cry and said ” I’ll be seeing my mate soon” … Yes that started me, so with held back tears I walked them slowly to the car.

During the service which was quite beautiful, the priest read a piece that George (dec) had written for his own eulogy.

He was 88 and had trouble walking, like Pop. He passed in his sleep, may he RIP.

This got me thinking and I asked Pop if he would consider writing something for his Eulogy, that I could read (if I’m able) he agreed and now has written over 1000 words about his life. He acknowledges that it needs to be ‘culled’ edited, but he wants to write it and I am so very proud of him. Who better to write about their life than the person I ask.

I conducted my 1st burial last Wednesday in 40c heat, it wasn’t pleasant, but the family were lovely and invited me back for refreshments and got a chair for me and drinks and sandwiches.

6 children in the family, 19 grandchildren and 29 great grandchildren, who let balloons off at the burial site. Despite the horrific conditions, it was beautiful to witness.

I received a call after I wrote my 2 pieces yesterday and I have another burial next Wednesday, this will be my 8th. A disabled man who passed at the age of 48. To get to know the family’s, their story, their lives, is what makes this calling so worthwhile to me.

So in finishing my chat today, thank you for bearing with me yesterday, for putting up with this Aussie who can be very melancholy one minute and high as a kite the next.

I will get there, I know I will, especially with the support and love of those who continue to read me and I thank each and everyone of you for your kindness, encouragement and unwavering support.

It truly means a lot to me, you are not just readers in different parts of the world, you are my neighbours, my friends, my confidants and you get me through the good the bad and the ugly.

Know that if you need me, I am here for you too, in whatever capacity I can be.

Thank you my virtual friends and those I have met in person ~ I think the world of you and love you.

xxx

remember how I love you (Prose)

when your eyes close for the last time
you know how much I love you?
will you see the family gathered
singing Czech and German songs

~ the songs you love?
will you hear my words ~ ‘love you always’
as I kiss your forehead tenderly
before closing your front door?

will you know your time has come
wanting those you love to hold your hand
to tell you please don’t go?
for we are just as frightened losing you
as you are of losing us

I want to ~ I want to not let a day or night go by
before you know
but this asks the impossible
as I cannot be there, live in your house, be by your side
as much as I wish ~ I wish

I have guilt when I can’t be ~
guilt that I am not near you
constantly
sleepless nights, dreams ~ nay nightmares
tears shed in daylight and in darkness

if I receive a call saying you passed
and I was not there by your side
holding your hand
telling you not to be afraid
how can I face myself?

do you welcome death?
have you had enough of this life
long to see the next?
are you torn with staying with those you love
and the need to escape
to stop your suffering?

how each minute of the day goes passed
when I do not think of anything else
than to be with you, when your time comes
not be out shopping or doing chores
but hugging you ~ saying it’s ok you can sleep now

we all must face this ~ to lose those whom we love
our hearts not scraped, but torn in two
will life flash before your eyes?
when you close them for the final time?
will you know how much I love you?

it’s too hard to comprehend
the time that you won’t be here
the time I can’t hug you close, help you ~ be near
the time that I no longer say ‘love you always’
and kiss you tenderly
but know this ~ remember this ~ I do and always will

©jmtacken Jan 2014

Tell those you love that you love them. Not tomorrow or the next but now. Show them that you do, hug them, kiss them, hold their hand. Tell them you will miss them. Tell them how much they mean to you and how much they are loved and why you are grateful they are who they are…for none of us know when the time may come when we unable to do any of this…

Just thinking tonight of what is to be…and though it may not be for some time (I can only hope) … we need to remember how life is so precious, how those we love aren’t always told enough. They are us, we are them… show them that you love them.

Crossing the Bridge without you (Prose)

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can I cross the bridge from life to death
when my last breath is drawn
not knowing what's on the other side
can I leave those I love and say goodbye
what thoughts in my last moments
that I have been granted on this earth
stay ~ please let me stay
as my hand is held in yours

I don't think I'm ready, there is so much
I've yet to do, the pain of leaving
~ living without you
is one that I can't fathom, there's so much
more I want to see; the walk across the bridge
is frightening, not knowing where it leads
cry not, once I am gone
as I walk away from you, be strong and
smile at memories ~ the love I have for you

Helping out of Love (Prose)

Mum

Mum

looking upon another’s life
who gives us~ their young
their offspring, the knowledge
to determine what is wrong
and what is right ~ the ethical
are we the deciders of their destiny
who see a life that could be ~ when
the person themselves does not seek
the truth or understand our love
the signs of something horrible to come

the disease that strikes upon
the aged, the memory no longer there
the feeling that they are caged
I want to help, we all do, but your
phone call tonight, your voice so
scared and angry, the thought of
locking you away
combined with other arguments
I felt your fear, it grasped my heart
~ and I…I don’t know what to say

and as you hung up on me
I can’t call you back to say
I am dealing with so much right now
I know you are confused and why
the family do what they need to do
but believe me with all my heart
it’s help we seek, to get you through
if only I could convince you…
if only I could say

I do this out of love for you
today and everyday

©jmtacken 21/11/2013

You gave me life (Prose)

ThinVeils2_04

everything once was

clear, concise, a barren path

no rocks to climb

no battering waves

cocooned perhaps

veiled against the harsh realities

sheltered within your arms

the upbringing of me

your life, beside me

mine beside yours

my love unblemished

two who showed and shared

never wavering sunrise to sunset

asking for nothing, supporting

from the cradle till the age I am

the veil lifted, the tasks at hand

now more evident

and I shall try, I shall be those rocks

those waves for you

to climb, to ride upon

let me clear your path again

give me strength to give you

the years that you gave me

for you are paramount

my existence your role reversed

I am here, for what you need

whatever it takes

 

for as long as it takes

 

©jmtacken Oct 6 2013

Photo Credit: http://www.1stdibs.com

The day has arrived..580th post and proud of my Pop!

2013-08-30 10.06.102013-08-30 10.20.25

The day has arrived, well yesterday actually.

I took Pop to buy a scooter (sorry Max – it was now or never)  – as the car was sold last week. He settled on a 2nd hand one (2 years old) and after today’s first ‘test-drive’ I am so glad he didn’t pay for a new one at $4000.00. This was just over half that price.

See in the 1st picture the smile – the look of happiness, as we set the speed to turtle (5kph) to get out of the driveway. It can ramp up to the hare which is 12kph….I know what a hoon.

Down the street we went, with me trying to keep up in my heeled boots. (Possibly not the best chosen footwear for the test run).  We arrived at the main road to cross, dad had to pull in next to the traffic light, so he could press the button.

OOOOOps – “Yes dad you take your hands off for it to stop. Ok a little bright blue nail polish – no one will even notice the chips…honestly”. We got to the other side, followed the scooter/wheel-chair friendly path that came to an end with a gutter and not a ramp..”Oh dear back it up Pop, don’t think you are quite ready for that”.

He reversed, but then decided some 4 wheel driving must be in order as off he went in another direction.  “Pop, (yelled I) no love, you can’t go onto the roads with these, you have to do a u-turn and we go back the other way”. “Hmm what’s that,  you can’t turn it around, hop off then”.

On I got flag flying proudly in the breeze and turned it around. Mission accomplished – off we went. Pop turns into the driveway to the strip shopping centre. “No Pop, you can’t drive in the middle of the road, you’re not in your car now, keep to the left like you’re a pedestrian”. (patience..breathe). Oh look a very narrow ramp that you possibly may be able to get up in order to get to the supermarket. “Up..no…up…no.. Turn dad, reverse dad, no not now a car is coming,  wait, now reverse, stop, forward, back”. STUCK.  😦 Kindly knight (without the shining armour) alighted from his car after seeing the trouble  I we were in and lifted the back wheel over the gutter. “Phew thank you so much”.

Into the small supermarket… not only small but almost every aisle was an obstacle course of wire square bins with grocery items for sale, or the blessed pyramid of coffee tins, just begging for a L plated scooter driver to run into. “You have got to be kidding me” (the wolf had nothing on my huffing and puffing). “Where’s the Manager”. Yes,  I was hot, bothered and patience – I had none.

“Excuse me, but this is the most unfriendly supermarket for wheelchair access or scooters for the elderly”.

“It’s a small store, we have to make do”.

“So you make do by filling the aisles with objects, that they need a rally car license in order to navigate?”

He shrugged.

I was getting angrier. “Come on dad, time for home”.

Off we went, dad taking the long way round to get back to the exit, with cars driving slowly behind him, as he still thought he was in a car and not a scooter. Cross the main road (luckily without any incident or need for more nail polish).

“Dad can you put it on tortoise”?

“It’s only doing 5kph”.

“Yes, but I have boots on not runners”.

We arrived home, safe in body but possibly not sound in mind.

More practice I am sure…that’s all he needs…  clearer aisles oh and 10/10 for giving it a go my darling!