When you are a carer for someone you need to think about what is best for them. For many years it was all about keeping daddy happy, that has now changed and my first priority is to keep him safe, he is a danger to himself and others around him.
In one of my first blogs I said there was something going on at the minute that I couldn’t discuss as it was fresh and new news to the family. Now I would like to inform my readers of what is going on in my life to date.
A few months back my father’s social worker said for me to start looking for somewhere for dad to go as his condition is getting worse. I started searching and making calls and inquiries on where was appropriate to send him and where would take someone with his condition. I found an amazing nursing home in County Armagh, Armagh city to precise. Green park nursing home, but they couldn’t take him; there is also a residential home I looked at in Armagh with great reviews, sadly due to my father’s needs they could not provide the level of care he requires.
My brother and I discussed the current situation we faced and decided it was time to look for a home to put dad in. We had been caring for him at home for ten years. We couldn’t cope anymore, and times were getting to difficult and demanding.
When a bed became available in green park it was like all my Christmases came at once, I knew the nursing home and the staff that worked there, I knew them closely and new my father would be treated with the highest of standards and cared for to the best of their ability. But one person stood in my way, the person I least expected to stand in my way.
Can I just state that this decision was not made lightly and for anyone who is not a carer let me try to help you understand how I am currently feeling. My father is like my child, I am responsible for his safety, well being and hygiene. If he needs food, heating supplies, electric, cloths or needs to go anywhere I take him or I get the stuff for him, well my brother and i. If he falls or injures himself in any way I am worried and panicked that he will be OK, if he falls I am there to pick him up. Sometimes I am there as a human barrier to stop him hitting the floor. This has and does result in me being injured. If you are not a carer and are not a parent then understand this, everything you have to do on a daily basis to look after you’re self, between showing and caring for you, working and attending university I have to do that for myself and my father. Notice how a social life wasn’t mentioned, maybe that’s because I don’t have a very exciting one. I wonder why.
When the decision was made by the family that it was time for dad to go in to a nursing home, we called the social worker, and was told she would be back tomorrow, she was on annual leave. So I called the next day to be told that she was still on annual leave. I told the lady on the other side of the phone I urgently needed to talk to someone as we did not want to lose the bed in the nursing home, it isn’t a hotel you can’t just hold the room indefinitely. I had 3 missed calls from another social worker, as I was in work I returned them on my lunch break and explained the situation to this lady and asked could she do anything for me, dads social worker was going to be in the office the next day for a private function and she would discuss it with her and have her call me. As dads social worker was not there at this time nothing could be don. I find it alarming and shocking that when a social worker takes annual leave which yes everyone is entitles to, there is no one there to help discuss your case. This did not happen I did not get a call.
When I eventually got my father social worker on the phone, it did not go smoothly, she asked what had happened for this decision to be made, my answer to this was that a bed became available and that dads condition was getting worse by the month. The conversation continued to take a deep turn for the worst. She asked how often I visited my father or what I did for him on a day to day basis. I would like to know what business was it of hers! I tried to explain that it was best for my father and that Ryan and I were struggling. In my opinion I should not have to convince someone on a decision that did not come lightly. It was a disgrace if you ask me the conversation I had on the phone. This was on a Thursday and on the Friday she went out to my father and spoke to him or checked up on him as she will say as she was off. I asked her not to mention anything to him as we needed to talk to him as a family. I’m sure you can all guess what she did on Friday when she was out visiting him, you guessed correct she told him it was totally his decision and that he couldn’t be forced into going into a home. With the way she spoke to me on the phone my brother took the protective attitude and called her on Friday afternoon, we had no idea she had been out to see dad. He had a similar conversation with her and was asked the same questions, it is a complete disrespectful question to ask Ryan if you ask me, he visits dad every day, he makes sure that dads day to day needs are met. Anyone that knows me or i may have mentioned in previous posts, Ryan and i have an agreement for dads care and i think were doing a good job. At least i hope we are, but after these phone calls we were left feeling rotten. My father is clean and well dressed with and clean and tidy house, we do what we can without living with him 24/7 tending to his every need.
So over the weekend I have been working the usual 7/8 hour shifts with an hour travelling to work and home again, (not to mention a car that wont stop breaking down!) in-between all this Ryan and I decided that we needed to go tell dad sooner rather than later. So after a shift in the hotel I headed to mums and my brother and I headed into dads.
Straight away he said no and for an hour he continued to say no, we tried reasoning with him and explaining it was two weeks and that we needed a break, it was a chance for him to see what it was like, we all knew the time was coming for him to go into a home and this would ease the blow. We tried reasoning with him from every angle. It didn’t work. I ended up in tears and Ryan ended up, well I don’t know how he felt.
Back to mums for some dinner and me and her headed back in after Ryan talked to dad’s sister, lets just say the response she got off dad was not suitbale language, this the woman who visits his regulary and calls himk every week. Keeping in mind she has her own family and lives over an hour away. Mum and I headed back in and one of the ladies that help’s look after him was there, we started the discussion again and it went the same way. Every angle was tried again and nothing was working. I ended up in tears again and honestly I just walked out. I couldn’t cope anymore and he wasn’t listening to reasoning, we want what is best for him and to keep him safe. I went and sat in the car and waited for mum to come out. The next thing dad was at the door with mum and she was helping him back into the house, after this mum got into the car and said he agreed to two weeks respite, better than nothing, and what we needed and wanted. Something clicked in his head and he went to the window and looked out at me while mum was still talking to him, this was when he went to the door to come out to me.
I don’t know what made this decision in his head weather he actually felt something for me, some form of pity or understanding it is hard to tell really with his mindset due tothe Huntington’s, or realized we were doing what was right for him. All I can understand is that something clicked and I am very glad it did.
This situation has been going on for around two weeks know. It should have been made easier by health professionals. I understand that they have a duty of care to my father and am glad they do, sometimes they can be useful. I do not understand why this situation was made 100 times more difficult on my family, we have rights as careers and are deserving of respite care. The social worker had no interest in hearing our side of the story, and she more than likely will tell this story a different way, but when you start picking holes in someone’s life and in an extremely sensitive area of their life they will get defensive, I did get defensive.
This is my experience with this situation and everyone has different situations. I can say that we are not out of the woods yet, on Thursday of this week I will be taking dad to see the home, and on Monday I will be calling the social worker again to inform her of the new developments and honestly I will be delighted to put her into her box! That he agrees to go for two weeks.
So readers don’t judge me and think we are passing dad off and the responsibilities off, can I just inform you all that during the two weeks that dad will be away, I will be in cleaning his house and re decorating the entire house, every single room. When I say cleaning I mean all rooms will be emptied and the fridge freezer will even be pulled out to be hovered behind. While I write this post I am looking up new suits of furniture.
I love my father very much and I now feel like I need to defend this fact! I have devoted the past ten years of my life and missed out on certain aspects and put others on hold to care for him. Would I like an easy care free life, yes but I wouldn’t change a thing for the world. He is my father and I love him, we have had our difficulties in the past and had our disagreements, we as a family have had to put up with difficult times due to his condition and also my father being his “normal” self.
I feel like I am rambling now and need to end this, I will keep you all posted and updated in the developments, and if anyone would like to ask me any questions please feel free to do so. I love meeting new people, and if I can turn a bad situation into a good by raising awareness or helping someone else then it makes all this a little easier. I continue to struggle with day to day life but we all have to stay positive.
It will be OK. It has to be.