My son has type 1 Diabetes since age 6 and MS at 36 and now blind

our son is 42 now and lives with us again. He was a chemist and worked all over the world until 2008 when he took MS on top of diabetes Type 1 he already had. He is now blind and his swallowing is affected.

He was never married so he sold his flat when the MS took over and built a room onto our house for himself. He is never or has never been able to even be in the part of the house he built his MS has been so fast moving.

Yesterday we took him to a respite centre 100 miles from home - it is the only help we get - this is what happened.

We were met by the carer who, the last time he was there, pricked her finger on his insulin pen. It resulted in our son having blood tests for everything which were all negative so that was resolved. He had to get concealed needles and lancets, that again was resolved, we got the needles. Next was the swallowing, he has been seen by speech and language therapist and has to have soft food all the time. The carer said 'No he doesn't the last time he was here he managed everything didn't you John' John couldn't remember. His short term memory is ok when you are speaking to him at the time but five minutes later he has forgotten. I said he has to have all his food softened because he doesn't have the power to swallow hard food. Oh well, because we said that last time and he managed she didn't see any problem this time. We left it at that because they will find out for themselves.

Next the most important part -

Another carer entered the room and we were letting them see how the new concealed needle on the pen had to be used to administer the insulin. He has to hold the pen very steady and push until a clicking sound is heard and then push the top to release the insulin. He can't push the top he hasn't enough strength in his hands and they shake too much the carers have to do that. this is what she said -

I don't know why they don't take all that away and give him tablets. My mother in law is diabetic and her sight is not very good and that 's what they did with her, took the whole lot away and gave her tablets . I said that could never happen with John, he had/has juvenile onset diabetes his body produces no insulin. I said your mother in law will have type 2 diabetes completely different from John - no she said she is diabetic and that's what they did with her and she is fine. She said you should ask about that. I ignored her because our hands are tied if we say too much they argue back we are wrong and would result in them saying they cannot meet his needs.

Today I am going to contact our diabetic health specialist nurse and ask her to 'phone them just to ask how they are getting on with the new concealed needles and she will tell them how important his insulin is and his food etc. without mentioning his father and me. We are not happy this time. It was ok when John wasn't so bad and could tell them himself but his mind won't let him. He has primary progressive MS and the deterioration has been very fast.

Result I haven't been able to sleep. Right now is time for his blood test and emptying his bag because he has suprapubic catheter. Whether we will be making the long road back again today for him remains unclear at the moment. I write everything in a book I don't think they read it.

That is my story. What do I do and are we wrong in putting him there.

9 Replies

  • My heart goes out to you and I wish you well. I think that you have to trust your judgement as a mother and reassure yourself that everything that you have done you have with his best interests. Everyone needs respite so don't be too hard on yourself if it isn't always 100% as you would want it. Sometimes you have to settle for less because taken altogether it is the best for everyone. Take the time he is there to do something for yourself and recharge your batteries and do not feel guilty about it. That it is the whole point of respite care.

    Best wishes

  • You are right I haven't 'phoned my son at all since we left him on Sunday partly because he can't use his 'phone now and have to get the carers to take the 'phone to him.

    The specialist diabetic nurse is to 'phone them today to go over everything with them so hopefully I will relax a bit better then.

    You are right though, this business of them saying he can feed himself, he can't but they will find it out for themselves . Also his food is important in knowing how much insulin he takes. He is on the four injection regime a day it is easier to control his diabetes that way. The carers can't understand the importance of counting the carbohydrate he has in each meal so we put most of his food over for them with him, all ready counted. Because his eyes are affected everyone naturally thinks the diabetes is the cause but it isn't it is all MS related. We were very aware of his control being important. He has two older sisters and no diabetes in our families, nor MS.

    Thank you very much again for replying and we do have to settle for a less than perfect eleven days just so as to get a rest. I am not caring so much for myself but do worry about his father because this time I can see how tired he is. He lifts John onto his walker from on top of his bed and onto the chairs for his food and onto the toilet so he is quite tired and we can see John getting worse all the time. we are getting roof hoist in bedroom and wet room but as you know these things take time. They are ordered though so that should make things easier for us.

    We do think it is not entirely safe for him to be at this respite now it was all right when he could tell them himself but not now so will have to see if there is anywhere else nearer home I think.

    Best wishes and thank you for your reply,

  • (((((((((Lizetta)))))))))))))). I do think you should write to the CQC. That isn't good enough and those carers' attitudes speak volumes about the attitude of management at that home.

    I don't know where you live, or if you could get funding for somewhere like this

  • I will reply to you later today. I had reply nearly finished last night when I accidentally pressed the cancel button. We live in Scotland. Today the specialist nurse is going to talk to them so I will wait until she lets me know what happened when she did. I haven't 'phoned my son because if things were not right it would worry me even more so will wait and see what specialist says. Thank you for replying to me though.

  • Just to say respite called John in Dr Gray's Hospital in Elgin I just knew they wouldn't manage

  • Hi Lizettaolive,

    I'm really sorry to hear of your son's health problems and the ongoing debarcle of getting respite care.

    I understand that you need a break from being his primary carer but I think it's time to get some better support. Have you claimed the Personal Independence Payment and any other benefits for him? If you have not then perhaps you should because the extra money might just help to provide extra care in your home so you don't have to travel to the care home. Plus, you will be on hand to give the support worker any advice that will help with your son's care.

    I'm very wary about letting the care home find out what you son's limitations are when you left him. I can understand your logic but he might not be getting fed and cared for properly, they could just be leaving him knowing full well that he cannot complain to you. People with disabilities are the most vulnerable in our society and can be abused both physically and mentally.

    I hope I haven't alarmed you, and I apologise if I have, but, you need better help and I only wish I could be there in person to do so.

    Good luck and I hope you get the support you need.

  • You are right and we are so annoyed that we did not follow our instincts. You see he has gone to the respite centre since he developed MS in 2008 and even a year ago he could tell them what he needed but in the last year his memory has deteriorated and he can speak with us but two minutes later he has forgotten what was said. I think the respite thought he could still do things for himself as before, although they were told he needed everything done for him. I honestly think, and so does his father, they were more interested in telling us his medication should have been provided in blister packs provided by chemist and making sure no needle was exposed on his injection pens than what we were saying. I do believe his injections were never done properly after we left him there after lunch on Sunday. This is only Tuesday and it was first thing he was taken into hospital. I am absolutely convinced he had no long acting insulin last night. I don't think anyone bothered, just left it to him. We told them they had to assist him but don't think they did. Result is he has ketoasidosis (spelling) and was taken into hospital this morning by ambulance and was barely conscious and was told he was grey. He is in HDU and had insulin pump and drip. We would have gone to Elgin first thing this morning but we were told at 10am he was being assessed and was to be admitted. We managed to contact his sisters who of course, were both working, but one of them works in Foresterhill and managed to contact someone in Dr Gray's hospital and he went to the A& E to see what was happening. He kept our daughter informed so when we go up again it will be to take him home. His other sister lives in Inverness and her and husband visited him at night. We were told tonight he is slightly better but still all wired up to drips etc. no food at all yet. I spoke to a very helpful staff nurse and she said they had the book I write with step by step instructions as to his insulin amounts and times and his food and she said she was aware he needed fed and was blind. She said they would look after him. The respite male carer who is a nurse, the only nurse there and only works three days a week, has been with him all day and the manager has gone back and fore all day. I just can't believe we let him go because we were both uneasy when we left. I wanted to 'phone them last night but made myself not do it because it doesn't look good always checking up but I wish I had. We all know he will never go back to the respite now. I think john had just too many problems for ordinary carers with no medical knowledge to handle. it just so happened it was the carer who pricked her finger on John's insulin pen we saw on Sunday and the other carer there that day was the one who said her motherinlaw had her insulin stopped and was put on tablets and was much better for her and it would be better for John. It showed they had complete misunderstanding of John's conditions. I didn't say much to her on Sunday but did say it will have been a different type of diabetes, no she said, she is diabetic, so I said no more but the more zi think about it I have to tell her she should get some training on the types of diabetes because she cannot say things like that which are totally wrong. I have a feeling she was there last night on duty at the respite and would have put so little importance on John's insulin she wouldn't have gone near him.

    It's really awful though, we try to do things right, we don't bother health care professionals unless really stuck but the problems come to us through things like what had just happened. Result is I can't sleep but hope tomorrow will be better. I know he will be in good hands now but things like that will always happen when carers have no training.

    Thank you for listening to me will try to sleep now.

  • Hiya Lizettaolive

    Oh my god! It is disgusting the way your son was treated and it is obvious that they have neglected his care. You need to get onto your local health care commissioning body (they used to be called PCT's) and make a formal complaint to get that respite home inspected. Your son could have died and ketoacidosis is a very serious condition that induces coma, fits and eventually death. My dad was a T1 diabetic and people just don't understand how serious it is. I saw my dad going into diabetic comas on numerous occasions and if they were trained they would know what to do. If I a child of 10, as I was when my dad had hypos, can administer a cup of sweet tea to a diabetic going into a coma then an adult should be able to do the same.

    Fingers crossed your son is getting the care he needs now and will pull through. My thoughts and prayers are with you and please keep in touch.

    Good luck x.

  • Well got son home from hospital on Friday and are working to restore some strength in his legs so that we can lift him onto his walker. He can't walk but there is a seat on it. His blood sugar is ranging from 14.5 and just now 8. He is very tired and wants to sleep so have doctor coming in later today to check him. He has no ketones so at least it is not the diabetes. The respite tell us they are not medically trained and cannot give injections so after us demonstrating the new concealed needles we think it was left entirely up to John to do his own insulin injection. We don't think he had his proper insulin from when we left him on Sunday lunchtime until he was admitted to hospital on early Tuesday morning. Ketoascidosis Doesn't happen through not doing one injection, it builds up until it becomes critical he gets admitted to hospital. Anyway we are coping but the answer is any future respite must be where trained nurses are on hand. Tell you one thing though, we are more tired than our son and getting him from hospital was a nightmare. Never mind we are back on track and just wish something could be done to even help our son's eyesight which is entirely due to Primary progressive MS not diabetes.

    Thank you for listening to me it did help a lot.

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