Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 21

Thread: Not sure how to handle wife's crying

  1. #11
    Forum Member
    Join Date
    Jan 2018
    Posts
    17
    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.

  2. #12
    Forum Member
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
    Posts
    34
    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
    Last edited by Tim-griffiths; 13th February 2018 at 04:55.

  3. #13
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,293
    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
    Last edited by Terry; 13th February 2018 at 12:58.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #14
    Forum Member MNDConnect's Avatar
    Join Date
    Mar 2016
    Location
    Northampton
    Posts
    79
    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

  5. #15
    Forum Member
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
    Posts
    34
    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

  6. #16
    Forum Member
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
    Posts
    34
    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

  7. #17
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    Location
    Sunderland
    Posts
    171
    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.

  8. #18
    Forum Member
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
    Posts
    34
    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

  9. #19
    Forum Member
    Join Date
    Jan 2018
    Posts
    9
    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

  10. #20
    Forum Member
    Join Date
    Nov 2017
    Location
    Hartlepool
    Posts
    15
    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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •