Help! I need somebody!

RANT ALERT! – I apologise now but I’m in need of a good old rant about the quality of care I’ve been receiving this past year.

Due to my complex needs, I require 24 hour care. Back in 2017, I shared My Top 20 experiences of weird, stupid and shocking behaviours of people working in the care industry. 18 months later, I haven’t seen much improvement. In October 2017, my Mum had to give up her job to take care of me full time then in August 2018, my parents moved from Somerset back to Hampshire so they could be near me because the care was so difficult.

From April 2018 to June 2019 I’ve had 3 care companies with 6 carers, all of which have not worked out. Plus I’ve been in contact with an additional two carers who were clearly not suitable.

The first carer I had worked with me from April – June 2018 for a total of six weeks, doing two week shifts. She was a mature lady with good experience but came across slightly bossy and controlling like she was the adult in charge and I’m the child who has to do my care her way. Also she didn’t have much confidence driving my mobility vehicle. A week before her next shift, the care company called to say she wouldn’t be returning due to “personal reasons”. I never found out exactly why she left but if it was because of me or the job, I would’ve preferred she was honest with me.

The second carer began end of August. She was the same age as me which I thought would be good because we’d have things in common and she’d be happy going out to pubs, clubs and live music events with me. However she was the complete opposite. She had never done live-in care, she was lazy and spent most of the day smoking in the garden and on her phone, never liked going out and refused to take me to two concerts I had booked, she had no confidence driving places and extremely homesick, despite visiting family members on her breaks every day. She stuck around until October after we mutually agreed it wouldn’t work out. Why send me someone who has no interest in live-in care and doesn’t bother committing to the work? Also, I have suspicion that she may have accidentally caused the death of my pet rabbit Mickey by over-feeding him grass and carrots without my permission.

It then took another six weeks to get another new carer and I felt this one was strange from the beginning. Her hearing was awful which is no good when their client is blind. She made countless mistakes which frustrated me constantly and she kept saying driving my wheelchair was terrifying. I had her two weeks before Christmas. She was then meant to return the evening of 1st January 2019. However a few days before, the care company called to say she wouldn’t be returning until the 2nd. So basically she changed her mind and wanted New Years off.

When she did return, I then had a massive dilemma with the care company. A few hours into her shift, I received an email from the office saying this carer would be leaving this position in mid-January and they want to discuss future plans with me. I called the carer into my bedroom and asked her about it. She said she had no recollection of talking about leaving. She then went on to say she was considering leaving the company due to issues regarding the company. I emailed the office back and asked to speak to them on the phone as soon as possible but they said they were too busy and could only speak to me the following week. I was so annoyed they weren’t speaking to me and hiding information from me, that I decided to start seeking other care companies.

The next day, I received a text from my Mum saying she received a phone call from the office saying the carer was leaving due to my rudeness. I was so angry and upset at this because they phoned my Mum behind my back when they said they were too busy to phone me and was talking about me to my Mum without my permission. This was totally out of order. I then found out they were reluctant to continue to care for me because of my complex needs and were finding it too difficult to find me a suitable carer. Therefore I left that company with immediate affect.

The next company I tried lasted a week. They were recommended by social services but they were no way suitable for me. I did the usual assessment process and they reckoned they had found a possible carer. The day before she was scheduled to arrive, the office said she has had to go home for a family emergency. The office said they have a possible alternative carer and they would send me their profile. I received the profile in the evening and planned to give the office my thoughts the next day. However before I even had a chance to contact them, the carer and a member of office staff were at my front door. I had a chat with the carer to find out about her and later decided to give her a go. Unfortunately she struggled with the personal care and could not drive my car at all. Within 4 days, she decided this job wasn’t for her and would leave at the end of the shift. However she had another week with me and if it wasn’t working, she may as well leave as soon as possible. I phoned the duty manager and explained this is not working out and could the carer leave this evening or the next morning and my Mum can return. The person on the phone couldn’t understand why i wanted the carer to leave and that my Mum is available. After 30 minutes it was decided the carer would go to a half way house in town the next day. Once this carer left, my Mum discovered the carer’s boarding pass dated 5 days before, meaning she had flown from her hometown in Eastern Europe just to do my care when I didn’t even agree to have her yet. I think they got the impression I needed care urgently and sent me the next available carer when in fact I wanted them to take their time and thoroughly look for a suitable carer while Mum continues caring for me. They said they would continue looking but two weeks later, I received an email asking if I still want them to start finding me a carer. So basically they haven’t bothered trying to find me a carer. I just gave up with that company.

The next company, who I began with in February and still continue to use, are an introductory company who recruit self employed carers. My first carer worked with me from end of February to June which I think is the longest spell I’ve ever had with a carer so far. At the beginning, she was great; good care experience, good English and fun to be around. But as the weeks went by, things she did or said became irritable and stressful. She kept talking far too loud when there was no need to. If she couldn’t hear me, she kept staring at me in silence or guessing what I said rather than saying pardon. She’s left me in supermarket aisles and picked up the wrong products or extra products for herself. She also kept taking over my house by opening windows when it was cold, blaring the sound of her TV or tablet across the house and disturbing me by hoovering whenever she pleased. By June I got the feeling she didn’t really want to be here and was only sticking around until my Mum returned from her holiday. I finally had enough of her when I mentioned I wanted to shower Friday morning rather than my usual evening time because I had my friend and her daughter visiting me Friday evening. She refused to do it unless I paid her extra. I was astounded by her reaction. Having a shower is a basic human right and I should be allowed to shower whenever I please. A week later and 3 days after Mum was back from her holiday, the carer pulled a sickie and left.

Also when this carer had a weeks break in March, I tried out a second carer but she was awful. She was extremely bossy, correcting everything Mum and I did, wouldn’t listen to any of my directions and couldn’t drive my car at all.

In addition, I had two phone calls with potential carers but both had poor English and no idea what my disabilities were.

I’m now waiting for my current care company to find another suitable carer. I think they may have one option and I’ll find out more next week.

So overall, trying to find a suitable carer is becoming impossible. I’m starting to feel like my family, my close friends and I are the only sane people with any common sense on this planet. I keep having these thoughts that I hate relying on people and wish I could use robots instead. I have the mental capacity to be independent but without the physical support, I have no life.

All I’m asking is for someone to be able to understand cerebral palsy and blindness, listen to all my directions, do my personal care, cook my meals, keep my house tidy, give me space, respect my privacy, drive my car and wheelchair and accompany me to work, appointments and social activities, without any stress, worrying or moaning… is that too much to ask???

Are you a disabled person with difficulties finding suitable care? Share your stories in the comments box or on social media.

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