So as everyone knows my father has Huntington’s disease! Shocking or what!! and guess what, I care for him.
So one of the things I have to do in caring for my dad is attend a yearly review to access dad and everything going on with his care.
So this meeting was arranged for a Thursday (February 23rd), I couldn’t guarantee I would get it off work, so I told the social worker that unless I could attend that I would rather the meeting did not go ahead without me present. Thought that was pretty reasonable! So on the Monday I confirmed I could go.
Again I feel like I need to defend myself, my brother and I take time off work (and have done for many years) to attend appointments and meetings for dad at short notice or have to insist that we get that day off over other employee’s.
So back to the story and less of the defence, I made my way down to Armagh on Wednesday night.
Thursday morning I woke at 8am, I raced into town to get my car ready for MOT, a friend of the family got a part I needed for my car and sadly it was the wrong part, so if had to risk it for a chocolate biscuit and hope my car still passed. Long story short my car passed MOT, thankfully with the broken indicator.
I headed to the library and started on my coursework which was due the next day and I haddent got a chance to complete of even start yet!
Dads’ meeting was at 2.45pm so I left the library without having finished my coursework and went to get him around 2.30pm; I thought I was walking into a room with my dad, the social worker, support worker from HDANI and the physio.
In the room there were eight people, EIGHT professionals, my jaw nearly hit the floor. Especially after what happened in the summer when my brother attend the last meeting.
There was an agenda sitting on each of the chairs and I was late! The top dog social worker introduced herself straight away – she didn’t even wait for me to finish sitting down, it felt like she was making a point to introduce herself to me and state that we had spoke on the phone. I was aware as soon as I heard her name who she was but she seemed almost defensive from the minute I stepped in the room, I think she was waiting for me to come ready to have an argument. After she made herself known to me, she decided the entire room should introduce themselves, this wasn’t a bad idea, as some of the people in dads care had changed. I feel like if she had have left the introductions as a group thing, it would have made me more comfortable, I felt singled out because of the conversation we had on the phone after the antics of the summer.
I have many times went in guns blazing to these meetings, giving off and shouting, crying and showing nearly every emotion. They honestly don’t care, and never have. Dad is number 1 and I have to fall in rank. Sometimes i wish someone was there to look after me .
Would you like to know the people that I had to talk to that day, I’ll tell you.
Head of the social worker department
Dad’s social worker
A lady who speaks for dad because the social worker decided in the summer that my brother and I weren’t telling the truth or forcing dad into saying what we wanted him to say.
The head of care for the care assistants
The day centre manager
Okay so I’m not the best at remembering the professional names, but I’m sure you all understand who I’m talking about.
The meeting kicked off and after everyone introduced themselves, each person gave a review, and to my surprise I was asked after each person gave their update what my views and opinions were.
Nothing new was said it was the same shite just a different day and sitting in a circle like something out of the AA.
Dads going back into respite in March and I told them I’m going to America in the summer and could he possibly go into respite over the period I’m away to help my brother out. They shockingly agreed……….for now.
The topic of communication was brought up, I was told that their office does not like to email as it is confidential information they are dealing with, and if they send me an email it will be short and sweet and not have any personal information in it.
During the summer I asked could all contact be made to me through email, this was because at the time i was mentally unfit to deal with speaking to these people. I was a hot mess!! I asked could updates on dad be sent through email, and anything dad might need be emailed to me, and if it was urgent to call me.
I was then told at this meeting email was not something they are a fan of using, i didn’t want dads intimate details discussed over email, like many times before they had picked me up wrong and were twisting what i was saying, only worse it was in front of a room full of people.
I explained again to them what i had meant, and we agreed to continue. Someone said to me recently, that offices like this don’t like to have a paper copy encase they say the wrong things? Could this be the reason?
The meeting went extremely well, my opinion was taken on board and they seemed to really take on board anything I said.
I just felt like they were sucking up to me, not the health professionals like the OT or Phsio etc, I mean more the social workers and carers, never have they asked my opinion so much!
I guess it’s a start and it’s a move forward, but why don’t I feel happy about it.
Am I being immature that they have hurt me so much I can’t just move on and forgive and forget id never let them see how much I’m hurting, and how much they hurt me!
Of course in the meeting I spoke clearly and gave my opinion in a professional manner but there were times I wanted to tell them where to go.
At one point I was told they don’t all sit around a desk! And what, do I sit on the sofa waiting for people to call me! NO obviously not.
I remember a time when I could have told you what every Doctor, Dietician and anyone who had contact from a medical background said to Daddy or myself. I took him to every appointment and went in to the Doctor with him. I even took him to simple GP appointments, some of the appointments are not ones you would want your daughter at, discussing personal issues, but dad would get confused easily and there was no one else.
At the minute I couldn’t tell you what stage dad is at, the social worker knows everything, and tells us very little. I received a call from one of dad’s health professionals involved in his care and they were shocked the social worker wasn’t reporting back to the family. I wasn’t shocked! Does that mean I’m getting lazy, am I failing dad letting other people take over. When someone asks me a question and I don’t know the answer I feel like a failure. I should know these things, I should be taking his to his appointments, but it’s not like I’m sending him on his own, the professionals go to dads day centre and see him there. I’m not a mother, so i don’t know if people will agree with what I’m about to say, but it feels like someone has taken my child off me and is making me watch that person raise my child. I’m not trying to say dad is a child! It’s just hard going from dads number one carer, and the person he turns to for everything and trusts to the last person he thinks about when he needs something. I am truly happy he has a good relationship with his social worker, but it also makes me sad because i feel like i have been pushed out.
Some people may disagree with me for posting this, its personal information, but how am I meant to help others with what I deal with day to day and month to month.
I have been having these assessments since I can remember; I think I was 17 years old when I attended them. I couldn’t imagine a 17 year old going in blind like I used to.
Maybe I shouldn’t be saying bad things about the people helping dad, they do everything they can do for dad and many people involved with dads care go above and beyond. I am one of the lucky ones who get ALOT of care. I did thank everyone and some more than others that I have witnessed firsthand the amazing things they have done for dad and continue to do. It has gotten a little easier from the summer, there are small motions put in place, simple things like when the day centre take him away every other week they go to ASDA and they help dad get things he needs for the house or cloths, I was even asked did this help me. As I told the people in that room, it helps a lot! When dad decides he needs something he obsesses about it, and I would have to leave University, or give up plans to go and get what he needs. It wasn’t always getting what he needs; I’m never far from a shop, but it was getting it to dad for when he wanted it.
I’m beginning to ramble, but I just wanted to get the good the bad and the ugly out there, stay strong and keep communication levels clear. Keep a record of things, meetings and calls and what was said. Ask for help if you need it, and don’t try to take everything on yourself. I learnt that the hard way, my brother and I used to do everything and now we realize there are people and services to do some things which can then give us some time off.!
The one thing i can say i personally took from this meeting is,
I did not loose my shite!! I remained calm when I was questioned, i spoke in a professional and adult manner and when what I was saying was being questioned to be truth or not i dealt with it like the mature and responsible adult I am. There was a time i would have had a sarcastic comment and swore at people when they questioned me, I was defensive and in my opinion had every right to be. Not this time, and for this reason I am proud of myself! (If i do say so myself) It’s nothing new you my readers to hear that I am always defending myself, and it gets tiring!
Remember #imnotdrunk is my views and opinions, I hope you enjoyed reading!
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