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Tim-griffiths
12th February 2018, 09:22
Sorry not been on for a while,wife, Mary was diagnosed in October 2017, her speech is now virtually incomprehensible and she writes everything down, although she does have an app on her tablet to help her.
Her speech, as I've said is very difficult to decipher, she had a peg in in January, which I clean and flush, although as yet I haven't the confidence to push the tube in and out of her stomach, District nurses are due to help with that for the time being.
She has lost strength in her hands and finds it very difficult,her fingers are now all gnarled, she cries a lot and suffers mood swings. She has trouble getting in and out of the shower, our shower is connected to the bath taps, and sometimes wobbles going up and down stairs, I worry constantly that she will hurt herself whilst I'm at work, the neighbours have my mobile number to contact me if anything happens.
all that I can handle at the present moment, but I'm not sure how to react to her crying all the time , sometimes when I hug her and tell her I love her and I'm going nowhere she just pushes me away, other times she hugs me back and the crying gets worse. I want to cry as well but I'm still suppressing the tears, I know I should let it all out but it's easier said than done
Any advice would be most welcome
Tim

Bern
12th February 2018, 09:35
Hi Tim,

It's a hard situation to be in.
Has the OT been to see you? It sounds like your wife needs a stair lift or through floor lift.
Also, I struggled with a shower over the bath and it was very scary. A wetroom might be the answer.
I know these are purely practical solutions and I know MND connect will point you in the right direction.
Take care,

Bern

Tim-griffiths
12th February 2018, 09:45
Thank you Bern
I think the CNS has spoken to west Berkshire council to come out and review the situation, we only have one hand rail going up the stairs too, so maybe they could do something there as well, all a worry though especially when she is on her own

Barry52
12th February 2018, 10:09
Hi Tim,

The crying and mood swings is part of the disease symptoms and can be safely controlled with antidepressants prescribed by a GP. The description of the condition is emotional lability and I control it with citalopram. 2 stair rails are a must have and as Bern mentioned an OT will assess the safety issues in your home.

Best wishes,
Barry

Tim-griffiths
12th February 2018, 10:26
thank you Barry
wife only diagnosed in October and everything seems to have gone at an helter skelter pace, what with hospital appointments, doctors, cns , dietician, salt,, ect
she has been given some drops to take ( citalopram ), she also takes carbocistine and patches for her phlegm and drooling, and some other stuff called riluzole
she has lately been having trouble with swallowing solids, so drinks ensure, supplied by the abbot hospital, who also supply other things like syringes ect, everyone has been really helpful.
a lot of the time i just feel helpless and although the supports there i cant stop worrying about her when at work ( been very good so far, but i wonder how long the goodwill will last )

Streetwise
12th February 2018, 11:05
my mam said she didn't want to cry she just couldn't control it ,sometimes she might laugh ,emotional lability doesn't just happen in motor neurone disease it can happen when you're extremely tired as well.
citalopram is a very mild antidepressant ,if you can ask her see if she thinks it works well enough ,the problem is it's only really made for a few months! so she may have to change onto something else.

Tim-griffiths
12th February 2018, 11:19
thanks streetwise, she laughs occasionally but its mainly tears and she was only recently given the citlopram so maybe it needs time to kick in properly

MNDConnect
12th February 2018, 12:42
Hi Tim,

Have you mentioned the crying and mood swings to your wifes GP? They would be able to explore the cause for the emotions further and look into different medications to try to help manage these emotions. They may also be able to refer her to a local counsellor. We have an information sheet which explains about how someone's emotions may be affected by a diagnosis of MND, to access this please click here (https://www.mndassociation.org/wp-content/uploads/2015/07/09c-managing-emotions.pdf)

I am glad to see that the CSN has made a referral to the local council to come out and do an assessment. It is really important that they are involved as they can look at your home and make recommendations about adaptations and equipment to ensure that it is safe for your wife. If you find that this referral takes a long time then please do let us know and we would be able to chase this for you.

Also, when your wife does see an Occupational Therapist (OT) it would be good to ask them about call alarm systems. This may help whilst you are at work as she could then make contact with you if there were any problems.

If you would like to discuss any of this in more depth then please do not hesitate to call us on 0808 802 6262. Our helpline is open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

Best Wishes,

Adele

Terry
12th February 2018, 14:59
Hi Tim

Like around a quarter of us suffer from Emotional Liability, I have problems with people being kind, sorry and loving, so your wife could well be similar. So hugging her, etc might well make her worse, but don't stop doing it. You might be able to make her laugh by being sarcastically nasty in a nice way, just blame me.

I found that that drug made a difference in a few days.

Like Mnda said, get some form of panic system, you can get some that will detect falls and raise the alarm automatically, and the company will ring you and others if you don't answer.

It would be good if your wife stayed down stairs if there’s no one with her.

The feeding tube takes a bit of getting used to but try not to worry about pushing it in a inch or turning it. Once it has been in a couple of months you should be able to pull it etc.

Does she have a RIG feeding tube, if so the balloon water should be changed weekly and that is best done by pushing it in a bit. There should be a specialist nurse that does it a couple of times to show you.

Love Terry

Ellie
12th February 2018, 15:20
Hi Tim,

You've both got a lot going on, I'm sorry. I understand where you're both coming from.

If Mary is like I was, she is undoubtedly feeling terrified, scared, angry, guilty and hopeless at this early stage post-diagnosis. As well as a possible PBA (PseudoBulbar Affect) which exaggerates emotions - known as Emotional Lability, or (my favourite) Emotional Incontinence, Mary is trying to come to terms with her condition, prognosis and all it entails. Emotional Lability is a neurological condition, it's not due to tiredness.

Pushing you away is a self-defence mechanism -"if I alienate him, he won't love me, so he won't miss me when I die" - and most of us have done it at some stage in our post-diagnosis life. It's wrong of course, but seems rational at the time!

You're right to say the antidepressant will take time to work. I had 1-1 counselling and that, for me, was excellent.

And, don't forget to look after yourself Tim. Your physical and emotional well-being are equally important. It's good that you go out to work, albeit stressful atm worrying about what's happening at home. By Mary's stage, I had carers coming in and out during the day. I think Adele's advice is good.

And, don't worry about the feeding tube. Confidence with it will come with time and, if it doesn't, the nurses will do it. But it will - it is hard to get it wrong or to cause pain with it.

Love Ellie.

Wife of Jim
12th February 2018, 17:20
My husband has bulbar and , he can't speak at all. He has a feeding tube too. He cried uncontrollably , The Dr. give him nuedextra and it has been a blessing .What y'all are both going through is overwhelming. The first month's are brutal , this disease s brutal.The right meds should help with her emotions. Best of luck.

Tim-griffiths
13th February 2018, 03:46
Thank you all.
Yes doctor knows about Mary's crying and mood swings, the specialist gave her some drops but they haven't as yet began to kick in, the CNS ,( in fact everybody ) , who see Mary have been a tremendous help and they all ask how I'm coping, my usual reply is " I have no option, I have got to cope " unfortunately we aren't blessed with a big bank balance and live week to week, I am struggling and pretty much exhausted most of the time. I have looked at the panic alarms, I tried talking Mary into having one but she refused on the grounds that we have no land line since switching to virgin media and she won't have it reconnected, she says our mobiles are sufficient for our needs, she can be very stubborn sometimes, and I hate arguing with her as it sets her off into a crying fit and her ( virtually none existent speech, becomes very aggressive ( all this I might add is totally out of character ).
The neighbours have my mobile just in case, but I still worry all the time about her and sometimes break off from my postal delivery to check on her and make sure she is taking her meds and the peg is all clean.
I can clean, flush and rotate the tube, but I come over queasy when I even watch it being pushed into her stomach, but I guess needs must and I will eventually be able to do this .
I know there is a lot of help out there and have been told to phone if I have any questions or concerns, but I feel like I'm imposing, even at work, and asking for time off for appointments I feel awkward, although this far royal mail have been very accommodating.
Thank you again for the help
Tim

Terry
13th February 2018, 11:47
Hi Tim;

We have talked about "Emotional Liability" and under about 25% of Mnd people do get this. It is due to the Mnd affecting the frontal lob region of the brain that limits the emotions. about 1 or 2 % of Mnd people have more damage done to that area of the brain and that makes then very aggressive. So when you say "becomes very aggressive ( all this I might add is totally out of character )."

She could be just aggressive due to frustration etc but it does sound like a bit more than that and she might well need special drugs to control that before it gets out of hand.

Speak to her specialist about this as soon as practicable.

Love Terry

MNDConnect
13th February 2018, 11:59
Hi Tim

Please do not feel like you are imposing by calling us here at MND Connect. We are here to support you and you are always very welcome to give us a call or email us if you have any questions or concerns.

Best Wishes

Rachel

Tim-griffiths
13th February 2018, 15:59
Thanks Terry
I will speak to him when I can, just busy at the moment with different appointments, just been to Newbury to see if Mary could go to the day care centre once a week, she goes for the first time next Thursday.
Not sure if it's just my imagination or I'm just noticing things differently, she was diagnosed last oct, she now writes nearly everything down or uses her Kindle app ( speak easy I think it's called ) , as her voice is difficult to decipher and her swallowing is getting worse, I hope it's my imagination, but I have my doubts .
Tim

Tim-griffiths
13th February 2018, 16:02
Hi Rachel, I know I can call and get the support or ask questions, even though I know all this I still have trouble asking ( since Mary's diagnosis ) just me unafraid
But thank you, I always have concerns but only because it's nothing I've come across before and I feel lost and helpless because I can't protect her against this cruel disease
Tim

Streetwise
13th February 2018, 16:27
just think of this motor neuron disease is much more well-known now people know what it means when you say the word ,I told people on the autism forum about my mother and I they said oh how terrible that's ALS isn't it !?it's terrible!
I didn't think people would know what it was ,I think the ice bucket challenge has changed peoples knowledge.
I didn't ask for help at the very start! but it was because I didn't know how ill she would become ! we'd met an MND Association support group leader for Sunderland !who only had fasciculations in his arm and nothing else ! for the last 20 years !so I was slightly confused .
get used to asking people for help !!!!!!I found it very strange ,I burned out because I didn't ask for help ,it's not a nice experience burning out.

Tim-griffiths
13th February 2018, 17:05
Hi streetwise,
I feel burnt out already , both physically but even more so mentally, im constantly worrying about her, especially when im at work,I'm a postman and most of the people on my delivery ( which is in the village I live in ) know the wife, I'm constantly getting ask how she is, have had offers of help ( never accepted, that I'm imposing thing again I guess ), and when I get home the first thing I do us wash , change and cleaner peg, then a cuppa ��, so even at work I can't get 5 mins of not thinking of the wife. Luckily she still has full mobility, but her hands are weak, her voice virtually inaudible and she said last night she is sticking to ensure, soup and weetabix in hot milk as she is finding solids difficult to swallow.
I will ask for help ( I did initially ) but it's as hard to get into that mind set as it is to comprehend this cruel disease.
Tim

murrjo1
14th February 2018, 01:38
Hi Tim i know exactly how you feel i care for my mum 24/7, and i am lucky if i get 2 hours sleep straight, sometimes i wonder how i do it but you just do, like you i dont like asking for help and my mum bless her dosent like bothering me but unfortunately thats life you have to get on with what it throws at you, my mum was only diagnosed just before christmas and also slurs her words badly, she has muscle weakness and is very unsteady on her feet, so wheelchair when out and my arm when in, although she cannot walk far, i dont know how you cope with working full time as being a carer is a full time job, i suspect you are probably shattered and that makes everything much worse plus the worry of leaving your wife and how she is coping, its horrible isnt it, what a nasty disease, like you said its the helplessness it feels so final, its like thats it, no ones fault, can you not have carers in, not sure who you would ask for that but it would make you feel better whilst at work, at least it may take some of the pressure off, we were offered carers but cannot remember who by, sounds silly but there has been so much going on, but at least it would take some of the stress from you whilst at work, you have come to the right place, you wont feel so alone on here we are all fighting the same battle and it helps to do it together. love jo xx

stev50
14th February 2018, 23:02
Hi Tim / murrjo 1,
I can fullly understand how you feel right now. My wife D has PBP /ALS and has recently become quadraplegic. She also suffers from restless feet syndrome. We have reached the limit on medication so keeping her comfortable is difficult . Late nights and disturbed sleeping patterns have become the norm for both of us lately.
I have always throughout D,s illness used all the support systems available to me to make my job caring for D as stressless as possible. I have asked for, and it has been agreed, that an overnight carer will come in to look after D,s nightime requirements. This will be on an alternating night basis for two weeks to give me some respite. It will be reviewed then to "see if things have improved" with D,s sleeping, i.e care cost concerns from CHC.
It has been alluded to by some astute MND sufferers who post here that they understand the effects of their illness on their decisions and how they affect their carers. Rightly pointed out too is that not all MND sufferers are able to reason through this. D has raised her objections to "strangers" in her house overnight . I have gently pointed out to D that this is something beneficial to us both.
The important thing is to shout for help if you need it, dont just ask. Also, what is good for you is highly likely going to be good for the person you care for, dont get to burn out point. Keep safe
Regards Steve

Tim-griffiths
15th February 2018, 16:02
Hi murrjo and Steve
The CNS did suggest someone coming information a while whilst I'm working but she refuses. Spoke to my boss today and he said I could just disappear if I get a phone call and return to work when I can ( so flexibility there I suppose ), she can be very stubborn sometimes, and gets frustrated very easy, but I'm luckier than most assuredly still have full mobility, although her speech has gone, and her swallowing is getting worse, the mnda volunteer came yesterday and I said I felt guilty eating a meal while Mary has soup or a weetabix in hot milk, so I tend to not eat properly, she did give me a lecture ( not nastily ), about looking after myself for Mary's sake as well as my own.
Tim

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