View Full Version : How do other carers cope....?

11th July 2013, 14:12
I've had all extremes this week. We met the dietician and he's also our 'key worker' and will be making referrals to OT, physio and the local Hospice for symptom management help. We also had a call from a respiratory nurse who's coming to do tests next week and she confirmed that she works with a MND specialist nurse. Add to that the MNDA RCDA is coming to see us at the beginning of August....finally we're starting to get some people/things in place to help. All this made me start to feel more positive about things.....

and then......

Dad has had two evenings of getting really angry and frustrated and on both days nearly thrown his brand new ipad across the room. He keeps saying he gets confused about what to write....I try to tell him to take his time etc I'm not going anywhere but he just seems to be getting crosser and crosser.....which makes me cross! I don't understand why he's getting confused, his brain is fine.....?

Last night he stormed out (at least he can still do that at the moment) and sulked in his bedroom, I didn't see him til this morning and no ipad communication just a thumbs up when I said 'see you later' as I left for work.

I'm not sure I can cope with all this on top of the MND. I think he needs to go on antidepressants and they were mentioned by the keyworker yesterday but whether Dad will agree, who knows? He's back on wanting to take his own life again which means him moving in with me to combat the depression clearly didn't work.....I'm at a loss as to what I'm supposed to do or say without sounding like I'm treating him like a child....albeit at times when ipad throwing he seems to be acting like one. I try to be understanding and know that he's frustrated, scared etc.....but I'm all those things too!

Again I'm sure it's just a bad spell but the thought of this for who knows how long ruining both our lives is quite frankly getting me down.....

11th July 2013, 15:39
Hi Cookewitch,
Mood swings come with the illness from hysteria to the anger you are seeing. Talk to the GP who should prescribe appropriate medication or talk to your Dad's neurologist for guidance. If he isn't sure ring mnda connect who will point you in the right direction. My wife went through extremes and had citalopram at the start each day to help. The brain can be affected with something called front temporal lability I think. If you search the main site here you will find some information about the condition which often accompanies mnd.
Has Dad got visitors during the days such as family and friends because long spells looking inwards and worrying about tomorrow don't help? As to how do you cope I don't know the answer . You will be surprised the range of skills and knowledge you acquire as things progress but you will find the strength. Irene and I had a friend who teaches yoga who used to come and spend time with us and it was amazing how that helped, not physically but mentally. I still go to yoga classes.


14th July 2013, 11:22
How do other carers cope...? This question caught my eye.
There is no simple answer to that. It is extremely difficult and will put your strength and personality to the test. When people used to ask me how I coped I would say well if my dad can cope, he is the person with this cruel disease after all then I can get through it. your dad's anger and frustration is only normal - we had many tantrums and ipad throwing moments but all you can do is be patient, you are not expected to be Florence nightingale but we all as carers have to find it in ourselves to stay calm, be patient, listen and reassure. Every day will bring its challenges and it is so very difficult but your unconditional love for your dad will shine through, and you will find it in yourself to be strong and carry on.

14th July 2013, 13:01
We've really learnt who our friends are and who we can trust since John was diagnosed last year. The Palliative Care Team of nurses, OT's, Physios and SALT's are nothing short of amazing. If I phone the Social Worker in tears she asks 'what do you need and I'll get it' and she does.
Our friends are now in three groups, those that can't do enough for us, including keeping our garden up together, those that show an interest in how John is doing, but nothing more, and those that won't be getting a Christmas card this year.
Family have been a revelation, from giving us money for a holiday (and coming with us to help with John), just spending time with us and supporting us, and finally to his daughters and ex-wife who have lied to him, tried to trick him out of thousands of pounds & made him think that he's losing his mind as well as everything else.
CC's tag at the bottom of his/her posts holds very true - today is the tomorrow you worried about yesterday. And you know what? today isn't as bad as I thought it would be yesterday.


14th July 2013, 13:09
Thanks....I'm glad it's not just my dad that wants to launch ipads across the room!

I guess I'm just feeling sorry for myself, it's hard when you can't talk to anybody about any of it who will actually have a first clue where you're coming from....

14th July 2013, 13:18
Hi paris,
what a lovely post - thank you.

14th July 2013, 13:50
Just feel even more of a failure now.......

14th July 2013, 14:12
Now come on Cookewitch...give yourself a little shake, go into the bathroom and look at yourself in the mirror and say you can do this and you will do this, then take a deep breath and carry on. You are doing a fantastic thing just by moving your Dad in with you...it's not going to be all roses ..even if he was 'well' there would be ups and downs. You are a wonderful person.....don't beat yourself up this is negative energy and you cannot have this. ~Talk to your Dad, say how you feel, ask what does he want and then talk to the key worker and get them working quickly to help you..you have to be assertive. Then come back on here and have a rant, you have lovely people here who can give practical advice and empathise with your situation.
Everybody has ipad throwing moments.......my sisters ipads and computers had battle scars!!
There is a book with a terrrible title called 'The Selfish Pig's Guide to Caring' or close to that...anyway it does actually have some good advice in it...if you can get over the title!
The anti depressants will make a huge difference, you must try and I know that's not easy, but if he can take them then his mood and mindset would be better.
Good luck, and with loads of love and thinking of you

14th July 2013, 14:54
He just seems so bored all the time.....I don't know if it's the MND or he just doesn't want to anymore but he has no facial expressions.....whenever I say something it's just the glazed bored look.....with there being no speech the non verbal clues are even more important but I just so rarely get them.....the only time I do is when he laughs and that's not often.

Just makes it all seem so much harder, I'm scared if I tell him he'll just end up feeling even worse and I don't want that.

People helpfully suggest keeping him occupied but how....I work all day and when I come home I'm cooking etc....on weekends it's housework, shopping and just trying to carry on with life as normal as possible.....unfortunately my normal seems to bore him but when I suggest a stroll on the seafront he says no......

I think it's because it's the weekend I feel worse as it's so evident...no doubt I'll feel more positive when I go back to work tomorrow.....it's odd as I don't think he's bored when I'm not here!

14th July 2013, 16:37
Well did the keyworker say anything about a day at a hospice each week? That works for lots of people and would give another ofcus for your Dad. I also know there are people who play 'words with friends' on the ipad on this forum? I know he would probably be reluctant at first but maybe he could give the hospice idea a go for a short time andif he doesn't like it ok but you never know? We always hurt the ones we love and sometimes the best thing to do is have time out...like when your Dad went into his bedroom, there's nothing wrong with that, although it leaves unfinished business, but sometimes you just have to let things go...I bet he felt bad really. As for his brain being ok..tht's exactly where the frustration would be, think how many words you speak each day and how hard it would be to type it all down on an ipad...that's what I used to think, suddenly the mnd person has to condense all their thoughts to a few important words or sentences for us to get the gist...it's enough to make you go crazy.
I know there's no easy answer, and I am not patronising you, but you are a great carer and just follow your instincts, and there's nothing wrong with being glad to go to work, to get away for a while.
once again

14th July 2013, 17:01
You're right Debbie, I'm sure that is why he sometimes doesn't bother to communicate as he can't be bothered to do 'battle' with the ipad.

I'm sure when the doctor from the Hospice comes tomorrow she'll mention a day centre or something similar......there is no way on earth I can imagine my dad saying yes....he might prove me wrong but I'd be beyond surprised. He's a solitary man, always has been, it makes me wonder if he was this bored when he was at his house alone before the MND? At the moment he can still walk, potter in the garden etc, which he has started to do to a degree, but on the weekend it's almost as if he thinks he has to stay sat on the sofa just because I am....if I say he doesn't he'll get the hump and take it the wrong way I've no doubt.

I just shudder to think what it will be like when he deteriorates further.....like I say....I can't imagine how all you other carers out there do it....you're better people than I am that's for sure! I feel so incredibly selfish!

15th July 2013, 15:34
Hi cookie witch.. My dad has been diagnosed with mnd and dementia I never want to read about it but today I am and just have to face it and I agree with it ruins everyone's life. I'm glad my dad doesn't Know he has it due to his dementia. I cry everyday all the time I sit with him and just feel devastated.he can no longer speak like your dad and he was diagnosed in April and already gone full speed with it. My dad is 69 but is now walking like a 99 year old man its shocking. I didn't even know what mnd was it took so long for him to be diagnosed. I feel like you how are people supposed to cope its impossible. I watched my mum break her neck Xmas day after falling spent 4 months in hospital with her learning to walk and dad started slurring and we thought he had a stroke but It was mnd.I'm angry and feel down like u your not alone. I hope you gain strength . Your not alone xxx

15th July 2013, 20:59
Thanks everyone. Mary, we too thought perhaps dad had had a stroke, but between Christmas and May his speech went totally. MND is a particularly horrid disease. My dad called it 'cruel and sadistic' to the palliative care doctor today.....spot on I thought.

The local hospice offer counselling to carers, and although I don't feel ready to take that up as yet, it's reassuring to know that it's there.

We've had some better days with less frustration so things always feel a bit more positive after some good days and a couple of laughs out of dad....I just have to learn to cope better with the bad days.

Thank you all for your support, it is good to know I'm not alonexx

16th July 2013, 22:57
just thinking Cookewitch, if you think your Dad will not want to do things because its coming from you, then how about getting the keyworker to suggest things....it is much more difficult to refuse a stranger......I'm sure if he was able to get out a bit while he can more easily it would be good for his state of mind, and do go for the counselling - you need to talk now...what are you waiting for, that's what they are there for, even if you say very little at the start just get the ball rolling you will be amazed at how it will help you.....it's talking to someone who is neutral and you sort the stuff out for yourself as you talk it through. So many things cost money but the hospice offering this for you, take it and look forward to it....please, you'll be glad you did.

17th July 2013, 00:47
Hi Cw,

I suggest you are trying too hard. Dad is content just being with you. Forget ipad and other things for now, just quality time in each other's company is good enough. xx

17th July 2013, 08:40
Hi CW,

Take Debbie's sound advice,the councillors will give you tools to help you cope,your right you re not on your own.

Take care.

Roy xxxxxxxx

17th July 2013, 09:17
Thanks again guys. I think you're right about the counselling and I will reconsider it now rather than wait.

Doing stuff with Dad in this weather is a bit of a non starter anyhoo....the added heat and humidity is really wearing him out. He said this morning he feels considerably weaker but isn't sure if it's just the heat or a further progression of the MND....I imagine it's a bit of both. I did clamber up in the loft last night and got down my fan so he has that blowing today with all the windows open.....cats are slightly traumatised by the fan however! :)

We have the respiratory nurse coming this evening to do tests overnight to see if NIV is required now or not. I suspect not as everyone else doesn't seem to think Dad's breathing is too bad. Can't say I agree but his levels when we saw the chest specialist back in June were 'not too bad', so I would imagine his overnight ones will be the same.

17th July 2013, 09:46
Hi CW, can suport advice to have counselling. I have had several blocks abd the luxury of someone being there for just you is great. The tools are useful and, after a while, you may fund yourself using them automatically.
Peter, my husband, has NIV and started it when his breathing was not causing much concern. This decision was based on the extreme fatigue that he was experiencing. Sounds as though your Dad may be in a similar position. Does your Dad enjoy listening to music or audiobooks? if he is new to audiobooks I would suggest a set of short stories. good luck

17th July 2013, 10:10
Dad listens to Radio 4 a lot during the day which he likes. He does read but mainly they are reference type books on bugs and insects etc. The audio books is an excellent idea though, I'll suggest it when I go home this evening. He has bought himself a DVD boxset of Dragnet but I don't think he's actually watched it yet!

17th July 2013, 18:42
...and don't forget go with your gut instinct, now you are the one spending most of the time with him you know better than the nurses coming in, if you are lucky and they're wonderful which so many of them are that's fine, but if you don't agree/understand with something, discuss it until you are happy...oh and take notes if you can too - it's almost impossible to remember what is said when it is so important!
keep on keeping on, and telling yourself you're great..because you are
XXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXXXXXX and a long distance hug (it's too hot !)

25th July 2013, 19:46
I too am going through this with my hubby ,he is so angry all the time (understandably) but seems to take it out on me.....he expects me to do everything says he will kill himself if I get carers in to help ....he is very dependent on me now and can hardly talk anymore but I feel he doesn't appreciate anything I do even though we have 2 teenagers I run about after and also run a , business ...he only ever tells me what I'm doing wrong and looks at me as if he hates me sometimes....he will not take anti depressants and says it's me who is the problem and I stress him out ...I don't know him anymore and the number of times I could have walked out !!! but I try and think of the happy times we had before he got this horrible disease ....he has had it 5 years now and the stress is unbearable sometimes ...just could just jump on a plane sometimes and never come back!!!!

25th July 2013, 22:35
Hi Betterch,

I cared for my wife for two years of this illness. She took anti depressants from the outset which were gradually increased over the course of her illness. Even so she had her bad days when as you say nothing went right for her. We gradually introduced carers who did little initially but their role increased as I rene became used to them and accepted how life with them became easier for all of us. The ladies we had were marvellous and became friends and very much a part of the family. A man is possibly different as adjusting to a lady showering you is tricky but a man doing it is even less appealing. Not accepting help leaves you with an impossible mountain to climb. If you cannot persuade him is there no one who he respects and will listen to. A doctor or long term care nurse or physiotherapist.
If there is no one who fits into these categories I suggest you ring mnda connect and see if they can suggest a way forward. The status quo is not really an option unless you want both of you ill.


25th July 2013, 22:38
Think you are having to put up with too much Betterch. I do not know how I would manage without carers and I have no children to look after. Can you get support from people your husband will listen to? Someone to explain that your health snd well being are critical to his future care.i live not too far from you if you need an escape!


26th July 2013, 17:27
I have spoken to him today and has agreed to look at carers to shower him and get him to bed .....our occupational therapist is coming next week and I have already pre warned her on the phone how I am struggling .....hopefully soon I will get a bit of time for me which seems very selfish when he has a terminal illness but I din t feel he is getting the best from me in the current situation we are living in ....thanks for the comments they have made me feel less guilty about my feelings x

26th July 2013, 22:18
Sounds like you have started to move things in the right direction.


27th July 2013, 00:01
When things settle down and they will, you must speak to a MNDA visitor who will advise and help you. My wife is my carer, I am 4 years into this monster disease, and I know how difficult it is to be a carer. I applied to my local authority for a carer grant and it's for my wife to use on herself, she has had a night in a spa and has money left for another spoil.:rolleyes:

Good luck


27th July 2013, 09:56
A night in a spa sounds lovely and my eldest daughter bought me a voucher for one at Xmas and its here in my drawer because I can never get out to use it .....I am going to try to get out somewhere once a week with my kids because my hubby doesn't feel well enough to go anywhere a lot of the time and sleeps slot problem is he wants me there even when he is sleeping .....I love him so much and it is awful to see this once fit footballer with a real zest for life become this sad depressed angry person who doesn't want to be here any more :-(

27th July 2013, 11:17
Hi Better

Such a sad situation, one that I hope does getter better for you. Remember, if you don't take care of yourself, how can you possibly take care of him? Sounds like his insecurities as well as this illness has gotten the best of him. Maybe bring in a therapist that you both can speak with individually and together, it might help him to understand you can't do it alone. All the best to you.


27th July 2013, 14:30
Hi all,
Its a very difficult time for everyone concerned ,living with a loved one who is suffering the never ending challenge that is MND, but as a patient and not a carer I think sometimes we need to be told in no uncertain terms when things are just not acceptable ,not only having care for someone who is no longer able to do the things we once never had a second thought about ,but this disease changes just about everything and no one is to blame and it's not anyone right to demand that everyone has to change their lives just because one has been unlucky enough to become ill, the day to day grind is tough for all and it's unreasonable and downright wrong to be miserable, aggressive and generally unpleasant to those who you rely on . We clear the air often when the wife says I need to look in the mirror ,she is right works for me ,I see a grumpy sixty year old bloke who can just stand up, can't talk, eats like a child, and dribbles for England , my thoughts are why on earth does she put up with this ,the answer is simple she is a far better person than I have the right to have looking after me ,not sure if the roles where reversed if I would be able to cope as my family does, so a few home truths would not be out of place,and you getting ill will impact on your husband ,so my advice is you get out and about as much as you can and live your life ,enjoy doing things you want too and don't ever feel guilty for something you have no control over ,we all have to make decisions and not all are popular but are needed to be made for the good of all and not one . I wish you luck and hope he sees just how lucky he is compared to some who face this on their own .

27th July 2013, 16:20
Hi Better, I agree with pete . He sums it up nicely. For us my dad did not want any carers comin in for our mum. He knew we were all there and he was ill too, caring for his blind mother also. We all had young children too. BUT when things started to become intense we knew what we had to do. For your mental and physical health you will need to put your foot down and explain things to him. When you are constantly grinded down - life on top becomes more of a challenge. I f you look after yourself you are not being selfish at all; you are just reminding yourself and others that besides a dutiful wife you are also a human being who needs to be 'tended too' as well. Good luck noor x x x

27th July 2013, 20:15
Well thought things were getting better then I come back after 4 hrs in the shop and his sister looking after him (my bit of escape) for him to tell me that he hasn't got long to live and I should be spending more time with him .....I give up I really do :-(

27th July 2013, 20:17
I am now drinking a bottle of wine wishing I wasn't here anymore !!!!

27th July 2013, 20:26
You have nothing to feel guilty about Better, don't allow anyone to do that to you, even a very ill husband. Maybe, seriously think about speaking to a professional even if it's just for yourself, and your own sanity.

God bless

27th July 2013, 20:29
Hi betterch,

Enjoy the wine ,wishing you a better day tomorrow .


27th July 2013, 20:59
Stick to it Betterch, do not let him bully you. I would tell him that every comment he made against you having a break will double your need for time away from him. Know it is hard but you are entitled to a break. My personal mission for this weekend is to get Peter to move himself off this estate via his Mobility scooter. I am determined we will go for 'walks' around village like we used to.know it will be hard but really need to get out without me loading the heavy scooter into the car and unloading it. report back on how I get on.


27th July 2013, 22:25
Good luck magic .....apparently I am the bully and he would have killed me if I had ever dared talk to him like I do if he was well ???
I've told him carers can have him Monday I've had it (although we know that will not happen ) x

28th July 2013, 19:03
Hi all
As a PBP 'member', I agree with Pete wholeheartedly
My illness gives me no right to be rude or selfish - if I do I deserve to be told so - and the missus is within her rights to tell me and place me on the ' naughty step' !
A little slap here and there is quite enjoyable !

Take care and use the team of professionals around you , together with family and friends to ease the burden


21st November 2013, 14:55
Reading all these posts has helped like you just wouldn't believe, thank you so much. My dad has always been a very active man, the last couple of years have been devastating, we can no longer take him out in his wheelchair, he is totally bed bound now and in a nursing home receiving palliative care. He is permanently on NIV apparatus but can talk to us a little. Only in June 2013 were we finally given a diagnosis although I'd suspected MND for a long time and the hospital fast tracked him for palliative care (after they made an unacceptable amount of errors!) The palliative care he recieves in the nursing home is just superb, the carers and nurses are so wonderful not only to dad but to us too. We are now waiting to find out if funding is to continue for him as when he was first admitted on fast track from the hospital, we were told he only had a few weeks left with us but 6 months on, that has had to be reviewed, so it's quite a worrying time on top of everything else. The thought of him having to be moved.......I just can't bare to think about it. My mom and I have thought we are the only ones going through the frustration, anger and sometimes hatred that my dad shows towards us (my poor mom in particular) - he only shows love and kindness towards his sister. It's so hard to take at times but I can only imagine how dad must feel after being so active all his life but at the same time I find his behaviour totally unacceptable but can he help it?

21st November 2013, 16:11
I don't think he can. With MND some of the frontal lobe changes effects their behaviour. With my Dad being prescribed Citalopram helped, he doesn't get so frustrated but I also think there is an element of him 'giving up' and I can't say I blame him. Being slowly paralysed at age 72, no longer able to talk at all and unable to communicate in written form either is just so unbearably cruel.

It's an awful disease!

21st November 2013, 17:07
Not sure if he can help it. Know Peter , who I care for, is the opposite. Always pleasant and polite. Unfortunately he does have intermittent delusions that he will not drop. Found him outside the other day, without rolator and not properly dressed ( he cannot dress himself). He was looking for a box full of 50,000. He was/is convinced that this will be delivered and believed the postman may have delivered it around the back. Not sure if MNd or outcome of brain tumour operation in 2013 but I raise these issues with professionals and they try to discourage his more buzz are behaviours. Can you bring it out into the open. Not as easy with a parent but it may help you all to feel less of a victim. Wishing you the strength to get through these challenging times.


21st November 2013, 19:14
OOOOOOOOO Bettch those words I've heard so many times lately,take deep breaths walk away regain sanity until the next insult lovey. We carers get such broad shoulders unfortunately, and they don't mean a word of it they are just lashing out. I have just had a whole week of it for saying I cannot do disturbed nights every night and that I needed a break, don't get me wrong it all hurts but we are through the other side again for a while and I now have a night a week where a carer now sees to him one night a week.
love and hugs honey, we are all here with you xx Ang

21st November 2013, 22:31
Hi cookewitch. Been reading your post and cant add anything that has not already been said. I have not been on the forum long but have seen and read your posts, i get inspiration from them and carry you are a strong and carer person and no doubt much loved by other members here. You are not repeat not a failure best wishes lots of hugs. Gerald xxx

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