Friends, Family & Carers Forum

[Sophia1]

Hello @Elac @Krishna 

I am so sorry that I have not responded..

I actually forgot about this thread...

This is a  common occurrence for me to write responses then either forget that I have...or be unable to locate where the thread is forgetting the title..

My own mind has been affected so very much by my son's life and lack of quality of life..

There are also birth family issues ....lack of understanding my son's situation...not attempting to understand...more not coping with...

I should not be surprised as this is how my own mind issues were dealt with by twin and mother growing up...too uncomfortable for them therefore...dismiss them altogether..This has only come to a screaming halt by my sister scheming and putting my mother in the middle...How anyone can do that to a now 95 year old...at the time at least 90 when I  became aware...is beyond me..

So I still tread very carefully on eggshells should sister ring..she controls all contact...

She has manipulated the situation at the nursing home where I am not allowed to visit or call..

I can only hear my mum's voice if sister rings me and puts mum on the phone..

I usually receive calls from sister when her world is falling apart and she needs my support... all that she has ever wanted and taken from me...

Sadly she has become very bitter..

I have not seen my mum for 21 months now..

I write cards every now and again trying to sound positive ..writing about the garden or birds..

I did get a phone call when mum turned 95 and she told me how lovely to hear my  voice..I broke down ...crying..apologising.. awful yet beautiful at the same time..

I had sent a huge arrangement of native flowers and I speak to the clinicial nursing director who took photographs of mum receiving them for me..

I have set boundaries with older son and continue with my therapy..

I have met some wonderful people through Carers which I struggled believing that I was one...I am classified as an unpaid carer who gives frequent telephone support..occasional physical support when visiting him in hospital if  in this state..

His phone calls are usually when he is in psychosis and needing someone to unload to...I listen carefully and am also told not to speak..

On occasions where I have responded...automatic reaction of love and concern...I have been sternly put back in place and reminded of how dangerous the situation is...have I not been listening to him?? the question asked...This usually takes up another 20 minutes where finally I have to say that I will not listen to any verbal abuse...that will not change..I will hang up...then realise that he probably cannot even hear my voice through the internal chaos that he  is experiencing...so I do hang up...

I work very hard at not trying to work out how he is after these calls....not thinking about his pain...his hating life...

I tell myself that I am not a professional and even they are unable to help him unless he accepts that he needs help..

Gardening, when I can get myself outside is my saving grace also...

I check the plants individually for growth and any sign of flowering...Such a wondrous feeling seeing the growth...survival...new buds..

I do not feel that I fit anywhere really on the forums..I struggle having to tread on eggshells on the forums as well as real life....a parallel world..

Currently I am pulling back and only writing to  certain people..

I wanted to respond to you both as your situations are probably the closest to mine although being different of course..

I do hope that I have not intruded on your flow between each other which is lovely to read.

I also hope that what I have written will  not upset you either..

Take care..

If you feel that you might like to keep in touch, please tag me..

I do understand if you would prefer not to..

Sophia

[Krishna]

Thank you @Sophia1 for contacting and sharing. My girl contacted me today. First time in over a year. I was so happy to read the first few lines of "Hey Mamma Bear, love you lots, miss you heaps" and then "can you send me some $$$$, promise to pay you back". End of txt. So today I'm curled up on the lounge in a very sad state. I still can't comprehend that message and the lack of any other words. I've been writing to her each week and sending packages for the past 12 months, txting and ringing to just see how she is and have had no reply whatsoever and now this. I'm glad it's raining here as a good excuse to curl up by the fire for the day. It reflects my mood. And also lovely to see my garden drinking in this lovely rain and thriving. So grateful I have the space for a garden. I hope your Sunday is gentle. 

[Sophia1]

Hello @Krishna 

I read the first part of contact after so long and thought incredible..

 I read the next few words in exactly the same way that you did .. my heart jumped for joy for you..

then that let down which would have been so much harder for you..

 I understand in so many ways..similar experiences.. overjoyed to hear him on the phone..then the delusions kick in.. My heart breaks for him .. I gingerly acknowledge.. wham abuse starts..lectures about" them" hearing.. he has told me this so often. (Some of this reminds me of how his dad used to shout at him.. not listening..)

eventually the request for money. When he was interstate I would give some for food (no way of knowing) It helped me by telling him that.. other times it was to buy something ridiculous.. I would give a flat no..then the bartering when I gave for food he would ask for higher.. continue until he knew answer no. When I would not send money.. bartering decreasing to some ridiculous amount of $5  I realised that it was a controlling thing..

He would always be nice. Then would not stop ringing ..

 I think that the illness somehow tells them that they are entitled. The more I stand up to him now he will try different angles..

He also now tells me what a horrible mother I am .. not helping my disabled son.. He does not have a physical disability.. has been on the pension for 20 years. There is a strong possibility that he had the beginnings of the illness as a child.  Very clever at slipping under the radar..

curling up by the 🔥 listening to the rain is heaven..  

thinking of your garden having 

thirst quenched by all of that lovely rainwater..

 I have been outside pulling up random weeds poking their heads up uninvited.. Deadheading many plants.. Observing more reseeding with excitement. It is the best that I can do for myself. I too love to read ..when worn out which I am now.. find it hard to read.. walking I am trying to get back into.. Just can't. 

Remind yourself that you have loved and still do love 💕 her..

The cold attitude is the illness..

She knows that you love her..

We cannot make them accept help..

We cannot take the illness away from them.. the professionals can only help if she lets them..if he lets them..

 We cannot live their lives for them..

So very hard..

Talk to me whenever you want..

Let me know if my writing about my own son is unhelpful.. uncomfortable for you to read..

I will reply when I receive your message.

Sophia

[Krishna]

Thank you @Sophia1 for your reply and grateful for your advice. It was so hard hearing from my girl just for money and it always takes me aback for a few days. My initial response is always one of disappointment and anger and then I remember her lack of empathy is her illness and not my girl but month after month the beautiful loving daughter I had  has slipped away. She has full support with NDIS and DSP. I don't expect to hear from her again for a while. I suggested I visit for an hour or so (6 hour journey) but she prefer I don't. So have spent the weekend smoking far too many cigarettes after quitting recently and paying for it today. Have to remind myself that I can't allow this situation to destroy me and am digging deep to get my self back on track. Really have to focus on my own wellbeing and leave my girls team to focus on hers. Gosh it hurts though. Please feel free to talk about your son. I'm all ears and shoulders and it would help us both. Much love and hugs xx

[Sophia1]

Hello @Krishna 

It was good to hear back from you..

 I get that being left holding the pain even though you can do no more..

You know this but those maternal feelings are there..

They can't be filed away under dealt with..

The love and loss..grief are as real today as they were from the start..

You get through the following days as best you can..

You were safe

So you smoked cigarettes if it helped to get you through that time ..it is an instrument 

You can stop smoking once the intensity of the feelings start to dissipate..

They will..

You will be back out in your beautiful garden nurturing Mother Earth..

I am over medical staff not listening and arguing.. mess ups.. ph calls.. appointment changes..

My anxiety level is flying..

Tag me when ready.. helps to write to someone with a closer situation to mine than I have found in all of these years. Thank you. Much appreciated. 

much hugs and love 💕 back..

How are you @Elac join in if it might help..

no pressure..

[Krishna]

Good morning @Sophia1  Although my mornings are never really a good start to the day. I wake with anxiety and thoughts of my girl. I've tried medication but leaves me feeling too distant and lethargic. Distraction distraction and trying to keep busy but there's periods of time, like at present, where I just can't seem to motivate myself and nothing inspires me. The heartache of grief can't be medicated away and acceptance doesn't ease the pain either. My girl is fortunate to have a good team supporting her but services for parents dealing with this is sadly lacking in our area. Psychologist always seems to focus on my girls needs and what I need to do to support her through this but not much help with my own needs. I'm in a very small rural town and spend my days on my own just going through the motions. I hope this low mood will lift soon and I find my mojo again. 

[Sophia1]

@Krishna 

Yes yes yes in response to the patient receiving the help..

the carer, parent, mother advised to take self care...time out for self..

All of this is so true ...though so hard when in full on anxiety...heartache...grief....feeling the loss of what happened to my child whom I gave birth to?

I am currently in the process of trying to find some extra support around this very stuff...including other grief..loss stuff that has added to the load...

Medication helps on occasion then ...prn I mean....I find can amplify feelings of anxiety..

We know all of the ways of distraction....mindfulness....meditation...breathe...relax...bubble bath...

exercise..

I self isolate when not going to carer lunches where I do not enjoy the food but do enjoy most of the company...in particular those with whom we feed off of each other...laughing away...

sounding more like hysteria..which it is probably close to...

Have you  ever telephoned the grief line?

It is loss and grief that we are experiencing and this has been confirmed to me and I have been reassured when phoning...

There are some beautiful souls who get it working there..

At the moment if gardening is your thing....you could try working on something where you can expel some of that nervous energy..

Digging a deep hole....no not to jump into...mind you that could be fun....as long as you can get out..

I can sound quite mad....I allow myself to now...I find that it actually helps...

I love it in my own little world where I live....as everyone knows me there...

take care my dear Krishna...I will carry you with me for extra support as I have to have a hearing and audiology test today...medical appointments ....

I have the worst experiences of lack of compassion..interest..being listened to from people with attitudes who work in these places...

I rang a helpline yesterday and was reassured that it is not just me...they are hearing this all of the time now..

At the same time when I have caring, professional help I provide positive feedback also..

Will think of you out  in the garden today...

I spent 3 hours out there again yesterday..

One day at a time for now dear friend...

Love and hugs Krishnaxx

Sophia

[Krishna]

Ooh I do love your way with words @Sophia1   I've just returned from the chiropractor after expelling my nervous energy on the garden and wood chopping block last week hahaha. Your suggestion if the grief line is one I will definitely take on. I had a phone call from my girls psychiatrist this morning as they are reviewing her once again tomorrow and for the hundredth time I had to tell of my daughters history. When it all started, what was she like as a child, what was she like at school, at home etc. etc. etc. Dragging the past into the present AGAIN. Psychiatrist asked how I was and told him of my utter depression and anxiety and his reply was "Oh yes, understandable". End of conversation. Thank you for holding space for me Sophia. I hope your arvo runs smoothly. We are pending lockdown again here once again but being the introvert that I am, it affects me zilch. Time for a soothing cuppa after being pummeled and realigned and I will call the grief line in the morning. Much gratitude 🙏 

[Sophia1]

love the wood chopping block as an outlet and resourceful piece of equipment providing energy source...

we have a mulching machine from the realms of bark shred from our beautiful tree...

sadly got to the stage where some of the bark was put in the green bin as running out of room storing in green bin bags...

now in need of more mulch..

hmmmmm

a lesson learnt...

spread special sand soil or soil sand or whatever it is onto what will be brick paved path from eventual arrival of garage to decking area under outdoor room..

special sand soil or soil sand was originally purchased and plonked for turf which has such tender care allotted that I think that I might be a tad jealous...laugh..

so after asking many times I found out that no that sand soil or whatever combination...version it is ....is not good enough anymore...weeds growing out of which I did remove...perhaps not fresh enough??? 

we are talking about the turf of course....therefore I weeded and spread said sand blah blah in the area of where brick path will be...stating well that will be useful for paving...answer was not quite the same...

very sensitive about turf!...so leave well enough alone..

pavers bought from gumtree advertisement a great find...are actually bricks which is what we want but I believe that they are brick pavers as are longer than house bricks and colour is perfect match...

so a win...several areas have the need..

sadly husband has a bad back again...hm,mmmm

my expertise around stretching etc and not doing it all at once....hmmm... subtlety have of course gone unheard...

schtum...

he has had soak in bath whilst I have been on forums replying to a few...

I have suggested he go and play a round of golf tomorrow as will be raining...emphasising that he does play in the winter when it rains....he has a golf cart for all seasons !..

yeah...I get some time home alone...

sound dreadful don't I..

I was very clear about needing my own space when we first met and of course he gets his with his two different sports and wood shed..

So all good there...

At the same time tonight whilst on the forums listening for two hours to my son....occasional two or three words then rant about have I not been listening..all very high tech stuff... some of which is so true...

.today I am not taking it to heart...

No disrespect..listening to yours and a couple of other's experiences has helped that I am not alone..for today's time ...

I am hoping that this in turn will help you in some way no matter how slight...

We cannot resolve or solve either or any of other's issues...

We can provide support when we are able to and also which I enjoy provide some levity..

If I lose my sense of humour..

hope that the chiropracter worked some magic and you are relaxing.

my gosh look at the time..

goodnight Krishna.. xx

[Sophia1]

Good morning @Krishna 

No need to reply to my epic essay about yesterday in my world...

I have come to the conclusion that many people within the medical field do not have enough time allocated to them to leave notes..

Following on with...those who need to have notes to read...either not finding any or also not having  enough hours in the day..

We have cloned into a world of data and statistics all required in all industries..

Who actually refers to it and reads it?

So the patient/carer/carers have to go through the same stuff over and over...

this of course triggers what we painstakingly have therapy for to get past..

All of our self care and boundary setting gets pushed to the side ...

as we once again have to start from the beginning..

I could go on and on about this as it happens far too often..

I will zip it up....

How is your garden?

Mine is calling me...

Arose late due to little sleep so only just finished breakfast..

Write when you can..

Remind yourself that you are a loving caring mother and have done the utmost for your daughter...

you are also a person and are now starting to do more for you..

Sophia 

I love this have shared this with another mum who has boy with similar struggles

It is in front of a country church about 10 minute drive from where we are...rural town in hills above city