Sooo much pooping

[Shirl]

Hi to everyone. I know I haven't been posting much recently although I do pop in for a read. I've popped in to ask a question about a sensitive situation, apologies in advance for the length of my ramblings.

 

As some of you may remember my brother Tom is in a vegetative state, that is he doesn't appear to be able to communicate at all and we are unsure if he has any awareness. He spends several hours a day in a wheelchair. Our mum and other sister and I take turns in visisting. A couple of weeks ago my sister's daughter took a cuddly toy into the nursing home for Tom. Like most men Tom was never one for cuddly toys. I ignored the presence of the toy in his room but didn't like it when staff kept putting it in Tom's arms (at my niece's request) when he was in the chair. I felt this was demeaning to Tom as he would never choose to sit cuddling a toy. I'm afraid I handled it completely wrongly. Instead of speaking to our sister (which I couldn't bring myself to do) I wrote a note in our relative/staff communication book stating Tom was not to be given the toy to hold because it is not something he would choose to do. My sister called me really upset and we discussed it calmly but haven't spoken since. She took the toy home.

 

Moving forward I was speaking to a member of staff yesterday and she told me that my sister allows her daughter (aged 9) to push Tom up and down outside like a dolly in a pushchair (staff's words). Tom doesn't actually like being pushed in the wheelchair and gets very tight in his posture which is the only response we ever get and shows us when he isn't happy. In addition she sits chatting to a relative of another patient whilst the other person's children run up and down, shriek etc making Tom flinch as he does not like loud noises. I choose to sit in the lounge or in Tom's room well basically anywhere that is quiet. I am really upset by this. It seems as though my sister is using it as a social occasion rather than going to see Tom. I really want to speak to her about it but really don't want to make things worse than they already are. I struggled to get to sleep last night because it was all going through my head. Do I risk sacriicing my relationship with my sister to ensure Tom is not treated ina way that causes him stress?

 

Please give me some sensible advice. I really don't think straight anymore and can't trust my own judgement. Am I being stupid and making a mountain out of a mole hill?

[Bexibex]

Hi

I am new to this forum so know nothing of your situation but your post really made me sit up and take notice. What an awful situation for you. I think it must be hard because I am sure your sister feels that she is doing the right thing and just hasn't realised that this is upsetting your brother. I don't think you are over-reacting at all. People react differently in tough situations and I am sure that your sister feels like she is doing the right thing. I know it will be hard, but perhaps you need to sit down together in a neutral place and discuss how you both feel about the situation. Talk about how the nurses feel your brother reacts to situations and try to work out a plan going forward. Your brother is the most important person in this and you both have to put your feelings to one side and consider what is truly the best option for him based on what the medical profession tell you. I really feel for you - this is such a hard situation for you and it is so easy for me to give advice on a situation I have never been involved in. Good luck. Thinking of you and your family.

[Lesley]

Sorry to hear that things are still difficult for you Shirl - it's a very difficult situation to have to deal with.

 

Could you arrange to visit at the same time as your sister and find somewhere quiet to have a chat? - it may just be her way of dealing with such a difficult situation. Perhaps there is a member of staff whom you both trust who would give a reasoned and unbiased view of your brother and the sort of care he feels comfortable with.

[keyhole kate]

Dear Shirl

 

I dont think you are making a mountain out of a molehill .What a difficult situation to be in Have you spoken with your Mum about how you Sisters visits make you feel being Tom's Mum she must have her own opinions. Clearly you love your Brother and only want what is he would want for himself if he could make his own choices. I am sure your Mum and Sister would agree that what is important is what Tom would want if Tom had a voice. Clearly You have spent quality time with you brother in order to sense his moods through his body language therfore knowing his likes and dislikes I think it is important you talk to your Sister about how you feel, I dont know how old your brother is perhaps an alternative would be to suggest as a family your make visiting times more structured by perhaps reading to Tom, looking through family photos talking about the pictures, getting her daughter to draw Tom a picture each time she visits therby occuping her too your Sister is more likely therefore to spend the time she has with Tom constructively.

 

I really feel for you It's very easy for me to say what I would do in your situation but I am not in your situation and it is likely to be far more complex than I could ever understand. I wish you all the best however you decide to handle the situation feel free to come on and ramble any time you want Thats what friends are for Xx Hugs xX

[Shirl]

Thanks ladies. It's going to be difficult chatting face to face with the children off school so it will need to be by phone. Our mum seemed more concerned about him being tipped out of the chair because the path isn't particularly level. She's confused by my sister's actions too. My mum and sister don't get on so don't talk - families! The staff wouldn't get involved beause they don't have time to talk about how well my brother is let alone family diagreements.

 

My sister did used to read to Tom and my niece has drawn pictures in the past. I think that's probably what they do when my sister doean't have any other relatives to talk to. Our mum and I don't talk to other relatives much because we're more Tom focused.

 

I'm glad I'm not obviously being stupid here. I'm not looking forward to talking about it but she goes to see Tom again Friday so I need to speak to her tomorrow.

[craftyhunnypie]

Hi Shirl - I used to be an Activities co - ordinator at a care home so can sympathise. It is very difficult not to treat a disadvantaged person like a child. I had to always remember not to treat them like children & I always respected each & every one of the people in that home.

I wouldn't really consider a care home to be the right environment to take your niece, to be perfectly honest. There are a lot of people with such different needs there. It can be upsetting & frustrating to a youngster. Perhaps your niece thinks that she is helping & caring in her own sweet way, when really she is upsetting Tom. I would ask your sister to not take your niece too often & for your niece to write down on paper what she wants you to tell Tom when you see him & give you any gifts for him. That way you are in control of what you tell & give him.

As regards the teddy - there's not much you could do there. Tom shouldn't have been forced to hold it - it should have been just placed in his room maybe in a discreet corner, so as you could have monitored his reaction to it & it be removed if necessary.

In your nieces eyes, she sees him as a child. She doesn't understand that he is just a disadvantaged adult. She probably can't get her head round that & / or accept it. So it's easier for her to think of him as a young friend / brother. It might be wise to ask her what she thinks of Tom & get her opinion of how she sees him in her mind.

 

I'd have a word with the senior carer / home manager about how you don't want Tom treated like a child & maybe ask if they could arrange a quiet room for Toms visits - away from his actual room. They should be able to do this for you.

Secondly, I would say to your sister that you love Tom & you love her & your niece, but could you come to an arrangement about what is best for Tom. If she loves you & Tom as much - she will respect your wishes.

You have to do what's best for Tom.

Best of luck

Emma.x

[Willow]

Shirl,

Just wanted to say how sad I was to see your update and how upset you feel over the way your sister & niece are acting during their visits. I know you said the staff don't have time to help mediate but you do need someone outside the family who can speak with some authority about what is best for Tom. I know how very difficult it is to hold back when you are so concerned for Tom but you need to raise it in a way that their behaviour will change rather than in a way that gets how you feel off your chest.

 

I don't know how old your niece is or how close you are to her but could you time visits so you can take your niece off for a small treat (ice cream or similar if she is the age I think) after she has had a brief visit and leave your sister with Tom without her having to worry about her daughter ? Maybe talk to your sister about books To liked and ask for ideas of books he might like read to him to gently suggest she does that sometimes.

Essentially you'll looking for behaviour modification techniques rather than 'having it out'.

 

I realise slow change will be very hard for you when you want what is best for Tom and it hurts you when he isn't being treated right but work out what is best for him longer term as well and it is good for him to have both his sisters visit.

 

It is such a horrible situation and you have managed it with so much love for Tom

[Shirl]

Thanks for the suggestions. We can't really do shared visits as Tom is an hour away (2 hour round trip) so obviously only one of us visits so as to minimise the number of journeys we each have to do each week. My sister takes her daughter with her as her and her husband find the niece difficult and I don't think he likes spending much time with her. I don't really want to go into detail about this on a public forum. Having said that when I have been there the niece sits happily playing on her Ninetendo so I don't think she is too bad. I have had to take my 2 girls on occasion and I agree it isn't a pleasant place for children. I do think my niece is just being caring but obviously she is only a child and needs to be taught what is appropriate. I don't feel I could have this conversation with her without upsetting my sister.

 

We do have access to the lounge which is always empty and very quiet and also a sensory room although we only tend to go in there when the weather is bad. First choice is always to get Tom outside for some fresh air as long as it is quiet. There are often children there so I tend to go in if they go outside. My children apparently seem to be the only ones that can sit quietly and draw or play (not that they manage this at home!).

 

I think I've decided I will mention first Tom's reaction to the young noisy children and suggest we try and keep him quiet and away from them. I broached it once before and she said it was stimulating for him but I think I will have to point out that upsetting him is not the stimulation he needs. The wheelchair I might just mention in our family book about how I've noticed Tom doesn't like being moved in the wheelchair and see what response I get.

 

Thanks it does help to hear other views and ideas.

[Space Chick]

I think as Tom has been unable to express himself, your sister has taken to doing what she likes. However as you have said that he is demonstrating a negative response then your sisters behaviour has to be stopped.

 

I mean poor Tom does not have the quality of life that he deserves, therefore the family should be making every effort that their time with him is real quality time with him.

 

Still thinking of you and Tom Shirl, and be strong, stick to your guns and get things resolved. After all you have Toms wishes at heart

[Chucky Mama]

It is so sad to heard your update Shirl. Could you meet with the staff and explain your concerns. Perhaps you could ask them to host a family meeting so that your feelings can be channelled through them. Perhaps they could suggest more suitable activities for Tom. Hopefully family members will behave themselves if the meeting is chaired by his carers. There are all sorts of activities that the niece could do that would be just as much fun for her to be involved in if they just gave it a little thought. There are children's books that are very amusing to adults. Does he show any interest in DVDs or Music. Might she be able to compile music for him on an ipod? It does need to be explained to her that he is an adult. I really feel for you but also applaud you for standing up for what is in Tom's best interest. You are a good sister

[kinsk]

I'm so sorry, as if things aren't hard enough, I can completely understand why this is causing you such upset and I don't think you're overreacting either.

 

I do agree with the others that have said speak to a senior carer/manager. They will be used to dealing with situations like this all the time and should be able to act as a bit of a go between. The family consultation is a good idea if you could arrange it so you all sit down with the carers, you can bring up your concerns without directing them straight at your sister.

 

I hope you get things sorted x

[majorbloodnock]

Only you will know whether voicing an opinion your sister doesn't agree with is going to risk the relationship between the two of you. However, if that relationship is that fragile, it's not a relationship; merely a truce. For that reason, I can only tell you my views in a parallel (but nowhere near as strained) situation.

 

If the person being cared for cannot properly look after their own interests, someone else has to take up that mantle. If no-one does, the person ends up having some of their preferences ignored no matter how careful the nurses try to be. If you are in a position to influence the situation and don't do it, you will have to live with that knowledge. More importantly, your conscience will dictate whether or not you believe you have done your best for that person in the circumstances you had available.

 

The same, of course, applies to your sister, whether or not your ideas and hers about what is best for Tom coincide. However, what is certain is that you won't find any common ground if you don't talk. If your two views are irreconcilable, you may well have to compromise, but at least you'll both know you've done your best, and have acted in what each of you believes to be Tom's best interests.

 

I can't say how you should act, but if I were in your position, I'd put a bit of trust in the relationship with my sister. If there's a relationship worth preserving, it'll survive a few stresses and strains.

[Cinnamon]

Hi Shirl,

 

I too have had experience of looking after a loved one who could not express themselves,after my Mum had an accident & was left mentally impaired.

I know how hard it is,not only dealing with your loss of the person you love 9as they will nevr be that person that you knew again), & with delicate family relationships.

 

In my own experience, I was often at loggerheads with my sister & brother over my Mums care - my sister is a nurse,so tended to think that her word was final,& my brother is a bit of a doormat who will agree to anything for a quiet life

 

You need a team behind you,in my opinion. I would speak to the nursing staff,whoever is in charge of your brothers care, & ask them to asses his wellbeing. Does he have an assigned carer - I am sure they could help.

If they agree,& I am sure they will with you that what your sister is doing is not only not in your brothers interests,but may be upsetting him, ask them to arrange a meeting between the 3 of you,so all issues can be discussed.

Then,if your sister knows that an eye is being kept on her behaviour when she is visiting,she will probably stop what she is doing.

 

I know how easy it is for some people to automatically treat a mentally disabled person like a child, & its a hard habit to break. While I think your sister is wrong in her treatment of him,she probably thinks that she is doing everything right.

 

Love & luck to you xxx

[Tiggy]

I cant add anything to what has been said already, i personally do not have any experiance of having a loved one so poorly, but I wanted so say that i hope things get better for you ((HUGS))

[Shirl]

Thanks again everyone. I wanted to let you all know I have been a real coward. Thus far I have just written to my sister and mum in our family communication book that I feel we should keep Tom's movement in the wheelchair to a minimum because it makes him uptight. I knew the person with the children wasn't in yesterday so didn't speak to my sister. I do need to do it though as my sister is in Monday.

 

On the good news Tom goes off to Addenbrookes (for the research I spoke of before) in 8 weeks. It has been a long time coming so we are pleased it is now on the horizon.