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Nettie B
28th October 2014, 14:28
I am getting desperate. I am Trevor's carer and wife and am living with this MND but on the other side. For over a month now it has been virtually impossible to work out what he is saying and he is unable to write any more. I understand that this must be incredibly frustrating for him. if I were ask what we can do about this the answer would be .... could Trevor get a speech aid on a phone or tablet? The answer is "Yes" he has both BUT although he uses it socially he only uses it about 5% of the time at home. I ask and ask him to use it at home with me but he only does so in dire circumstances.
I honestly feel as though I will go insane pretty soon as I am speaking to a brick wall all the time. I can't go on like this. It's hard enough trying to find food that is suitable. answer all the phone calls and help in all the other ways that we wives do out of love as well as necessity. I'd turn myself inside out for him but all I want him to do for me is use the expensive tools he has bought to communicate with me as well as with the rest of the world.
PLEASE would some of you back me up in this as life is becoming intolerable.
How will I help Trevor if I crack up myself .. because this will happen soon if he won't help me do tins one thing to help me cope with this lousy disease.
I do need your help folks!
Nettie

Terry
28th October 2014, 14:43
I think that you need Trevor's help, not our's. We are a bit the other way, I often ask for my talker and my wife complains.

How are we going to have any chance to understand the others needs.

You can just go on strike, don't do anything for him that's not clear. Do try to chilaxe and be more chilled, no not towards Trev but in life if you can.

Love, hugs Terry

pete
28th October 2014, 14:56
Hi Nettie ,
I cannot understand why anyone would make life more difficult than it needs to be, why dose he think you can understand him . When others can't, I know first hand after five years of no speech ,that it don't get any easier, ,the whole idea of having gadgets around is to make life a tad easier for all the family, as for the food why is that your problem ,he has to have some input to what he can eat and what's not on the menu for him, I still do all my own meals,washing, and housework, anything I can manage I do try, get the dieticians help, there is so much food that can be made edible for us, and you make certain that you continue to eat normal foods that you want and like,no point in you falling ill. No one benefits from that. I wish you a speedy solution . But it needs both to make it work.

Nettie B
28th October 2014, 15:35
Thanks so much to both of you. I was beginning to think I was going mad ... still might but less likely now!
Nettie

Trevorhb
28th October 2014, 15:37
I know you should not use a open forum to communicate with your wife, but I feel I must put my side of the argument.
I realize sadly, that some of you are in wheelchairs most of the time and living on one floor and carry your speaking device around with you all the time. Although I cannot walk any distance, I can still get around our 4 bedroom house and garden. The problem is I am always potting about, so, if my wife speaks to me upstairs, yes you've guessed it, my iPad is downstairs, if we go down, then I will have left it upstairs. An iPad is not that small or that light when you have weak hands, so I do not carry it with me all the time, I just cannot.
The other problem is they are slow, if you are trying to communicate with more than one person, the conversation will have moved on before you type a reply. At the weekend I had it on most of the time as we had family visiting, the next day it needed charging and took most of the day to do it. I am reluctant to leave anything on charge overnight as it is not unknown for chargers of internal batteries to overheat and catch fire, this has happened to a friend of mine.
I have recently bought my wife a Hudl 2, it charges in just 3 hours. It's great and affordable, you can buy 2 for less than the price of 1 iPad, but the Predictable speech app is only available for Apple products. Why is everything designed for disabled people so expensive?
Finally I am sure those of you with similar problems know how frustrating it is not to speak clearly. I keep trying, I know my voice is not clear but I just cannot go around not making any noise at all. I think that is the root of the problem.

john
28th October 2014, 15:43
Hi Nettie,
You sound like you need help. Trevor is unlikely to change and you can only ask questions and try to get answers to encourage him to talk.
Do you have a local mnda support group who might visit or someone else you could share your feelings with in Trevor's presence so he knows how you feel? Presumably there are no carers coming in or regular nurse attenders.
Do you have mutual close friends who you could share your feelings with and who could talk to Trevor? A family member or friends who go back years.
Other than that I can only suggest you ring mnda and see if they can offer a solution.
A frustrating time for all concerned and you could maybe take a leaf out of Davec 's book and see if the local hospice can offer you both respite.
Good luck in your search for a solution.
John

willsandco
28th October 2014, 15:44
Nettie, cant he even hold a pen now? That is very sad I was only thinking that if he cant do that, how can he press the keys on his IPAD and use his Predictable by Therapy? I didn't know he couldn't write any longer. I have my IPAD with me all the time and a clipboard and pad and countless pens in every room. I have given up trying to make myself understood to poor Peter, It was causing such terrible frustration. Now that I have come to the realisation that my speech has gone, I am much more positive about reaching for stuff. I think sometimes it is all in the mindset and you have to adapt and adapt and adapt - and stop looking backwards to think about what normal life was like! I use my Predictable most of the time now, especially when we have company so everyone can understand. Don't despair. Type or write out a letter to him which says you are feeling the strain and he has to use his communication tools. He will read that then and perhaps things will improve. And what Terry and Pete have written is good advice too. Keep the faith. Much love Joycie xx

Trevorhb
28th October 2014, 16:05
I am reading everything Joycie and yes, I cannot write, my hands are so weak I cannot even do up shirt buttons. My wife can let out her frustrations on this forum, which is good for her. I am now switching off and going downstairs and will pick up and use my iPad, OK?

willsandco
28th October 2014, 16:21
Trevor, I don't think anyone realises just how difficult it is when you lose your voice. I don't know who suffers most, the person whose voice has gone, or the carer! I just know it has caused tremendous difficulties for me and Peter - easier these days because I do write things down all the time or go on machines. I just cant imagine how bad it will be when my hands refuse to write as communication is my world and for the moment we are managing OK. Like I said to Nettie, keep the faith! Hugs joycie xx

Terry
28th October 2014, 17:02
Thanks Trevor and Nettie;

These are important issues and it's good to discuss them. My wife often goes and want a discussion when I am in the shower or somewhere that they talker is not. I used to type with an aggressive nature, not what I said but the way I hit the keys. Let the tension out and just type normally.

If you have not got it just sign her that you need it.

Priditable??? I think that is available on android, one on a ten inch tablet. Try down loading your free speak?? on her Hudl 2, it would be good to see if it's OK.

love Terry

Egg1
28th October 2014, 19:36
Hello Nettie,
I so know what you mean, although my other half can at least write little notes on the note pads around the house. But I do feel that we can't have the same kind of conversations/discussions that we've always had. There are lots of important issues to talk about at the moment like extension versus moving and this is difficult because he won't use the i-pad. He's also reluctant to using his wheelchair so gets extremely tired, he was also advised to have a midday session on his night time breathing machine but won't! I think a bit of stubborness helps but....!
Last week we were reduced to tears (the good kind - with laughing or was it histeria?!). For a few days he had been jotting down the occasional sentence/word on the i-pad and hadn't erased them, when he was 'saying' something with it, our son persuaded him to press 'speak' instead of getting up to show us, so he did, and up popped the voice with our week in a nutshell!! - one of those moments when your life passes before you. (Sorry, seemed hilarious at the time). Hope you are feeling better soon, Luv Egg.

Nettie B
28th October 2014, 20:30
I don't know which of you to reply to first. You are so kind and understanding. I feel ashamed that I should even need to ask you all for help. I should be able to get Trevor to understand. Sometimes he seems to but other times he just doesn't want to know. I've come to bed early ... just so exhausted with all this emotional trauma, It just shouldn't be necessary but I'm so glad you are all there. I'm not going to get into having a "domestic" on here. That 's just not right but those we care for MUST realise that we need help from them too even if it's making us feel that they are actually interested in what we are saying. I'm rambling (just so tired) so will stop now and listen to Classic FM. I can't thank you all enough for all the understanding, kind words and excellent advice. I'll read these posts over and over so I don't miss any of the advice. XX Nettie

Terry
28th October 2014, 21:11
Hi Neetie;

By asking us to help helps us understand more. Like at school, someone asks a question that most people are to embarrassed to ask, but everyone learns by it.

Sounds like you will have to carry his I pad around.

Have a good sleep, hugs Terry

pete
28th October 2014, 21:33
Hi Nettie ,
You have no reason to feel ashamed ,we all know how incredibly difficult things can be ,and that is never more true than with mnd and everything that brings along, I guess if the forum were to be honest about how this disease causes trouble within family's ,we all have to face our lives being changed because of the stresses it causes , I see it as its my condition ,and it's me that can't speak, then it's my job to do all I can to limit while I can the burden on the family. Get some rest ,things are always better in the morning.
Pete.

Nettie B
28th October 2014, 22:56
Terry.
Funny you said that. I was always the one who said when I didn't understand. I always thought it was the teacher's job to explain it better. As you say lots of others would say " I'm glad you asked that Nettie because ! didn't get it either!" Seems I'm still doing it doesn't it?
Still awake, Classic FM'x nearly over though.

Thanks Terry

Nettie B
28th October 2014, 23:20
Thanks Pete,
I've had bouts of depression over the years. The worst thing about it is knowing that you're making your loved ones unhappy and also knowing that it upsets them knowing that they can't do ANYTHING to help. In fact whatever they do seems to be wrong. This seems to a bit like MND. Your loved ones (carers) can do little to help apart from trying to maintain the staus quo and helping the sufferer retain as much dignity as possible throughout their illness. Unless you, the patient, can work hard at it, as you seem to, you hurt your loved ones and add to the stress that they already have.
It's so hard for we untrained, unqualified and inexperienced carers to get much right. I gave Trevor a beefburger the other week. He could have eaten it fine the week before but things had changed and he choked quite badly. My confidence in working out what to cook has taken a nose dive since then.
We really do need encouragement and thanks or we think we are failing!. . So many parallels with the two illnesses really!
Must get some sleep now, as you say .... and Classic FM will be closing down soon, I think.
Thank you for your support, Nettie

marieline
29th October 2014, 02:50
Don't be so anxious Nettie, it serves no purpose. Trevor is a big boy now, do not blame yourself for everything that goes wrong. I found that you guys communicate perfectly on the forum. Just take into account that it is useless to communicate with us if you are not in the same room and facing each other, even better if there is no background noise. Like Terry said "chilaxe' and breathe, some things are not worth stressing over. If you are upstairs and your hubby is in the garden, it will save both of you time if you meet each other halfway and perhaps grab your hubby's tablet while you go. Please take good care of yourself and try and go with the flow.
Best wishes
Marie

BlueEyesOhio
29th October 2014, 03:37
Hi All,
Nettie you really brought some things out for me! I SO appreciate hearing your side. I am the one with MND and my husband is the carer. I'd like to share a little about how we cope. He is SO good to me. In the beginning (4 months ago) when I was diagnosed I used to get so frustrated because I was told I had this disease and there was no cure. I would just have to learn to LIVE with it. At that time I was trying VERY hard to deal with it and I was pretty much a mess most of the time.

It seemed that some of the things my husband did annoyed me. I was frustrated one day about something that I thought he didn't do "right" and he turned to me and said, "Honey, I'm only trying to please you. I don't try to do things to make you mad or aggravate you" I looked at him and I felt SO ashamed! I was SO wrapped up in my own pain trying to deal with this disease that I failed to appreciate all that he does for me and what he is going through. He has such a patient, loving nature. At the present time he is making coffee for the morning in case I get up before him I can just turn on the coffee machine. THAT is thoughtful!

I am adjusting to this new way of life a little at a time. He is adjusting as well. I am learning patience (never used to be my strong suit) I am also learning to keep my mouth shut! Sometimes I just don't say anything rather than what I know could come out of my mouth. I'm trying to learn from him - the gentle, loving way he takes care of me.

I don't want to get in the middle of a "domestic" or take sides so I'll say, I know you and Trev will work this out. I can see both sides.

I'm trying to learn from this disease. I'm trying to learn patience, kindness, tolerance. I'm trying to use this horrible disease for some positive purpose. I have a LONG way to go!

So you can say, "All this sounds quite Pollyanna-ish" Maybe so.

There is an American Inspirational speaker named Joni Eareckson Tada (I'm not sure if you've heard of her) who was injured in a diving accident when she was young. I have heard her story on YouTube. She has been a quadriplegic for almost 50 years. She has the sweetest spirit! She is no saint and she has said so but she has turned her horrible circumstance into something that has made her a beautiful woman.

I wish you both the best!

Lynne

Night walker
29th October 2014, 06:38
Hello Nettie,
You can only do what you can and you only know what you know. If Trevor needs something he will find a way to tell you. it must be so hard for you both. This disease could crack a diamond so expect it. Big hugs to you.

Hello Trevor, I can only imagine how hard this is for you. I am dreading my hubby losing his voice, I will try to 2nd guess as much as I can when/ if the time comes. I do know he will flash his beautiful smile my way and my heart will melt and the world will be ok again for a few seconds.

Trevor this is the hardest job I have ever done. I hate it, I am tired all the time, I am scared too. I would also turn myself inside out for my hubby like Nettie and the 100's of others caring for their loved ones.

Can you still smile? You know the sort of smile I mean, the killer smile that makes the heart melt, one of those special smiles that goes all the way to your eyes and makes them twinkle? They are worth a million £ís.
If you can then do it.
A smile can be everlasting, in my minds eye when I think of people, my long dead parents, my good friends, my children, my hubby, they are smiling a big eye twinkly smile. It's the single communication gesture we remember most. If you really cannot message to Nettie then smile a true smile. Nettie will melt and smile back. No grimacing, us girls have built in grimace detection kits along with the BS detectors! Lol
hope to meet you both at Papworth one day soon. We are due there on the 24th nov at 9:30.
Big smile and hugs to you both
Sylv xx :)

Jeannie
29th October 2014, 09:03
Hi Trevor,

You can buy iPad Neck Strap/holder so the ipad is with you at all times and buy extra long charger cable so when you have visitors all day you can keep connected to the mains. ;) ;) ;)



http://www.icarryalls.com/assets/images/DSC_0102iPadNeckStrapPortfolio.JPG

Treelover
29th October 2014, 09:13
Jeannie, it's good to have you back, you have so much knowledge.

willsandco
29th October 2014, 10:06
Everyone here is so right! Family frustrations build up all the time! I have grandson (13) staying. He has mild autism and you have to sit with him and just explain things slowly. He is not unintelligent at all but he has to have information piecemeal. His Mum has taken Peter to Sheffield to return the breathing machine. I am here with him trying to help with his homework about the trenches. I am world war one mad, always have been and the bookcase is filled with books about it. I got the books down, downloaded so much off the internet. Then we went in the dining room for me to explain. Let me set the scene. I have my laptop with information on, my IPAD with predictable on, my clipboard with pad and pen! I cant talk, trying to explain via technology isn't anything like as good as old fashioned speech. We have ended up in a real frustration, fallen out completely, I am raging because he cant understand - he is raging because he is autistic and he needs things to be explained slowly and rationally. Rationally in this house? I don't think so any more! The joys of MND! So, Nettie and Trevor, you don't have to be married to reach impasses with communication, do you? Happy days! Joycie xx

Terry
29th October 2014, 21:12
When reading one of Trevor's posts, he said about his I Pad running out of charge. The lightrighter's don't last as long and days out can be a problem. I got an electrician friend to fit a twin 12 volt socket so that I can keep it charged.

The wheelchair service MIGHT do this.

Not much help for Trevor as he walks around but but I guess he could carry a 12 volt battery around for a back up supply.

Love Terry

marieline
30th October 2014, 09:46
Good one Jeannie, I do hope the I Pad is not very heavy as if he has to carry this around his neck all day long, his neck muscles are most like going to wear out and complain. Balance i believe. If it's not urgent, why stress over a conversation, why not address all the urgent matters at breakfast or something and the rest can wait for luck time or afternoon tea. "CHILAXE" :) PEOPLE, Gosh i love this word Terry, thanks
Best wishes
Marie

willsandco
30th October 2014, 10:36
Oh, Marieline, I wish life was so uncomplicated!. I am normally a noisy, unpredictable sort of gal! I am Gemini, my mind races about all day. I just could not begin to think that I couldn't contribute anything from breakfast through till lunch. This not being able to speak drives me utterly mad. I want to contribute to conversations and by the time I have composed it on Predictable or written it down on a pad, the conversation has moved along. No possibility of being able to utter the funny witticisms and asides that used to be part of my being. Darned nuisance, all of it Hugs Joycie xx

Terry
30th October 2014, 10:40
Ditto for a lot of us Joycie;

I do find that the Lightwriter is a much better in a conversation, mainly due to it's double screen and it,s louder voice. Best to have a one too one conversation and I do cope in meetings by using the bell before speaking.

Some people can know what they said a minute before and tie things together but most can't. You start to write a direct short reply and then have to explain where and what the comments about.

So you would be better to write a paragraph instead and then why bother to use all that effort so you keep quite and frustrated. Still things can only get worse or maybe technology will come up with a better mind reader, the ones at the moment are cheep but not much good.

Free speech would be nice, people think that a family gathering is nice but I would prefer one person at a time.

Terry

willsandco
30th October 2014, 11:27
I just want a machine. Terry , that shouts out what I want to say, as I think it! But I don't know that technology can ever provide it - and sometimes, It might just be best that my thoughts aren't aired without some kind of editing! I am just not a quiet sort of gal. Peter and I drive miles without me talking (although I do take IPAD, type stuff in and hold it up to his ear!) But nothing, nothing in the world can replace the spontaneity of speech, can it? We just have to amend and adapt, and learn to be patient and remain mouse like in the corner! - and hugely frustrated to boot! For example, last week, we were in the car, with the disabled blue badge on the top, The window was open and it slid sideways, flew out of the window and landed in the middle of the busiest junction in Lincoln. I was in the passenger seat, trying to explain what had happened, trying to yell, trying to get him to stop the car! He eventually stopped 500 yards up the road, so I had to hobble back and he went to retrieve it, to the loud cheers and claps of various motorists at the traffic lights. Normally, I would just have said to him that we had lost it out the window and he would have reacted earlier! On reflection, it was a funny thing to happen and we do laugh about it but it is just another example of MND robbing you of your voice. I have become accepting of it all, I suppose. There is really no alternative, is there? But this is one of the worst aspects - losing your spontaneity! Love Joycie x

Terry
30th October 2014, 11:42
Agreed Joycie;

I find it a little harder, I have a fair command of english but as you have probably noticed, Dislextic (can't spell and get words mixed up). I was good at talking but rubbish at writing.

Have you tried an extra speaker on the I pad, My one did not work on Trevor's I Pad but has worked on the older ones. You can get blue tooth speakers that might be easier. I use a speaker in the car on the faster roads as I am in the back.

Sometimes I struggle to write through the country roads, as my fingers bounce around hitting the wrong keys, only to have my wife say she can't understand it. Sometimes it says things wrong, with a false accent, and rests at the wrong time and sometimes it's just my spelling.

We do moan alot, Terry

ccinjersey
30th October 2014, 12:44
Communication seems to be on the agenda. Heading out soon to go with my friend to meet with speech specialists and rep. for an eyegaze system. Don’t know what this appointment is going to entail for my dear friend, but I already know how angry and upset she is with me and her partner for setting this appointment while she continues to insist her speech is improving.

She continues to perceive this situation as me and her partner against her. I will never understand why she would prefer to have no form of communicating with those that love her?? I can honestly say I’m going more for her partner’s sake (he asked me to come) then hers at this point. I’m angry with her too for not caring enough to want to communicate with her daughters, the man that loves her, and her best friend.

Hoping this day will have a positive outcome.

CCxxoo

Terry
30th October 2014, 12:53
So it's handbags at dawn then Cc;

You have no option but to support him. The eyegaze system is a complete computer system.

Good luck, Terry

PS:- I am behind you all the way, a long way behind so you can't see me.

Nettie B
30th October 2014, 18:58
Thanks again to everyone for the help with communication.
We went to the hospice today for a session mainly on relaxation. We learnt a lot about "chilling and relaxing". Terry will like that!
We started with a group session where we discussed why we get so tired, both patients and carers. We and both spoke out (Trevor with his IPad). We discussed the various reasons why both patients and carers get so tired .. a lot of it being fear, frustration , anxiety and feeling that we are failing, learning such an important role on the job with no training, feeling angry about not being able to do what we used to be able to do and have to rely on others. We discussed how tiredness and frustration can cause us to behave in ways that we are ashamed off ... losing our tempers and falling out with each other. One of the volunteers, a sweet, gentle and softly spoken lady, admitted that she used lose it sometimes when she was caring for her husband. She was so positive about Trevor's IPad. She sympathised genuinely with Trevor about it's limitations and lack of spontaneity but encouraged him to think of how much better it is than no communication.
Trevor had a hand massage and nearly fell asleep while I was in another room having a back massage. I haven't felt so "chilled" for YEARS.
What a wonderful day. Can't wait till next week when we will learn more. Must just practice what we've learnt today ... especially, for me, the breathing ... It's hard to rant and rage when you are taking deep breaths!
From a more +ve Nettie, more thanks to you all and to the folks at the hospice. XX

GrannieAnnie
2nd November 2014, 08:51
How well I know your problem as I too have similar difficulties and you are the first person who has summed it up so beautifully. The iPad is heavy to cart around and as you say by the time you have typed in what you want to say the conversation has moved on!! I too want to carry on using what bit of voice I have as I believe if things are not used then we lose them, funnily I hear what I am saying but get frustrated when others don't. There are several apps out there that are free and my husband has put one on my mobile, its is lighter to carry around but of course it is pretty small. I wonder if the Hudl2 will take the free apps - mine is called Talk for Me, but there are others, so put in a search for predictable speech apps and something might come up. I think you and I are in about the same state, if I don't open my mouth nobody would know there was anything wrong, there is of course, my swallowing is not quite the same any more and my breathing not up to what it was, but having realised we can't do anything about this MND then we just have to get on with it. Obviously I am still lucky to be getting around, no idea what the future holds but from reading what some others are having to deal with then it may not be good. Today is good, tomorrow may not be so good, so lets go for today. By the way its pouring with rain so maybe it will have to be an in day - hobbies help. GA

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