Catching up.


After much thinking about how to talk about the things that have been going on recently, I have decided, the best way to go about this is just to do a quick round-up of where we are at, rather than dwell on it.     I have done too much thinking, and have decided, I need to get on rather than let it all get to me.     Life has to have light instead of darkness, so that where I am trying to be.

Old Person, has been in a bad emotional place since coming home from hospital, but we have tried to keep her on track, even though some days it has been really difficult not to scream at her.      We decided to buy her a wheelchair, so as to give her some freedom – OT would supply nothing until they knew what the longer term plan was, and we couldn’t leave her with no ability to leave the house.     I managed to get a second-hand chair, and luckily it arrived on the day of the school nativity play OAP afternoon.     D was over the moon that we were able to get her there, as he was a Wiseman – total typecasting, and it meant an awful lot to him to have her there.

Last week she had an appointment with her consultant.   Hubby went with her, because we felt he would be a little more detached and able to ask the relevant questions.     Basically there is nothing surgical they are willing to do for her.   They have decided because of the way the hip is, there is likely to be massive blood loss if they operated, and the risk is too great, of her dying.    This sent her into a mild depression.   It has given her a death sentence, she has said.      It has therefore been my job to try really hard to keep her spirits up.     We bought her a present, of a bath lift.     It may sound strange, but when you haven’t been able to have a soak for so long, it boosted her spirits considerably.          I have made her an appointment to go to see the GP next week, so we can discuss where we go from here.     She needs pain management reviewed, and we need to know where we can turn for help.

When she was sent home from hospital, no help or guidance was offered.     It was just, you are her daughter, look after her.   She is my Mother, so of course I will, but I need help and support to give her the care she actually needs, after all, I am not a nurse, and I don’t know if the things I do are making a positive difference.      With the boys, and their problems, I have attended various courses and gained help from different organisations, and still I look for more help, so I am hoping to find at least some fall net of information I can plug into for elderly care.

Onward and upward.

The boys have been plodding along.

M didn’t have as bad a December as he has had in many years, but that’s not to say it ran smoothly.      He is still hating school.    There just isn’t the level of support he really needs, and that is not a dig at the staff who do look after him, but the budgetary restraints that don’t allow him to be looked after in a way that would allow him to actually achieve at school.      There has been a major break through on his emotional development.   Suddenly his cuddly buddys have become people to him.      It might not sound much to most parents whose children go through this phase when they are preschool, but to a child who has been emotionally muted, it is a huge break through, and he is happy to be Daddy to his girls.      It’s beautiful to see the love he has for these creatures, and I love them dearly for allowing him to experiment with his feelings.      At Christmas the boys had an X-box, as they are both Minecraft addicts, and it was all they wanted.    This has made such a difference to his life.     Because of his addiction to Stamp – the YouTuber, he has become quite an expert at Minecraft, and is happy to impart his knowledge, so once his classmates knew he was on X-box, he was coming home with various gamer tags.     It was great to see that his peers respected his knowledge.     After an evening playing online with a couple of his classmates, the following morning he was asked to join in with their pre-school running about game.   It was really emotional to see him being included.     Unfortunately there has been no repeat, and I think it was because it was all too much for him to process.   He will comment when he notices his peers go online, but he makes no effort to join with their games, and will ignore requests from them.      Hopefully when he has thought about it, it might become easier for him to interact.

M has been suffering quite bad nightmares for quite some time.   We have tried various things, and eventually bought him a new bed – he had a midisleeper, and so we bought him down to a cabin bed.     It seems to have had a positive effect.    He is wanting in bed cuddles before settling down, something he hasn’t wanted since he was tiny, and I do wonder if this is part of his emotional awakening.      We have also started filling his head with love and happiness before he settles down.   This involves, not just talking about happy things, but filling his head with kisses – I have to blow kisses, which he pushes into his ears, so his head is full of love – his words.        As a parent, you do whatever you can to take away the monsters inside your child’s head, and you do them for as long as they work, before trying something new.

D is just D!!!!     He goes through life absorbing everything going on around him, and regurgitating it when he can.       He tells me he hates school, but I know this is a huge exaggeration on how he really feels.     He loves his teacher to the point of devotion, and admits he enjoys sums, and reading, but its writing he doesn’t enjoy, and this puts a total damper on everything else!       He has had a poorly start to the year, with already a week off school with a chest infection.     He is however over that now.

SO that’s where we are at.     I am trying to stay positive and see the bigger picture while dealing with the day-to-day goings on.



11 responses »

  1. I think you’re doing an amazing job keeping your mum’s spirits up.
    I hope M carries on with his emotional development – that’s a big breakthrough and must be heartwarming for you to see among all the trials with looking after your mum.

  2. Jane, you’re in the same place as me. I’m appalled at your OT. That’s unforgivable. You need a bed aid and a stair lift at the very least, as well as a toilet frame and home alarms if you haven’t already got. Saying they need to wait for the long term assessment is rubbish, you need it now and there are things they can give that would help instantly. If they don’t take care of the carer, they’ll spent a hundred times more having to put carers in. It’s a point that does my head in constantly. One doctor told me we’d always be at the bottom of the list as mum has a built in carer with being in our house.

    Your care management plan needs sorted asap. I feel some of the same, but at least I have names now and an idea of how to move forward with the whole thing. We got an 80% grant for a stair lift which has helped incredibly, as well as shower and stair rails. We got our wheelchair in one day, and I suspect my mum is more mobile than yours at this point. I really don’t understand why they’re being so crappy down your way.

    You need to call 08456 081206 for a care assessment which should help push the OT along. There is also the social services who can help arrange for carers or funds for you to buy help in the home. I’m just away to phone for mine, with the hope of getting some respite in summer so we can go away. We’re taking one of the boys to Badaguish with direct payments money, but it means she has to come with us in a chalet for the first time as we plan to stay to see how he gets on, and there is nobody to look after her here. She’s not best pleased, but there isn’t any other way.

  3. ps, the requirement for assistance and funds goes on what money our older people have, and not what we have as their carers. The majority of aids are not means tested.

    The red cross can also provide emergency long term loan of equipment. They have a place in Aberdeen, but not sure if there is anywhere in Shire. They’re worth a call.

  4. Thinking of you and thinking @Scottish Mum is a star and totally correct in what she says. It is a disgrace and they will leave you if you don’t demand. Went through same thing with BBC1’s 92 yr old mum. Just remember to care for you too!

  5. Pingback: When things start happening…. | ASD Mummy with issues.

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