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Thread: Hard

  1. #1
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    Hard

    Hi all

    I'm struggling a bit. I'm supporting my aunt to look after my dad. We are doing 50% of care each. We are also getting some outside support. Dad is getting ever more frustrated. He basically sits in the same chair all day and every day.It has probably become too difficult to go out any more. He has lost use of everything. He has bulbar mnd, is early 70s and progressed quite quickly. Lost use of legs arms, hand and speech within 12 months of diagnosis. Doesn't use ventilation. His co2 levels are quite ra8sed at night but we're not going ventilation route . He's 17 months since diagnosis and 21 months since first symptoms

    So my questions are ...

    1. Dad is seems so angry a lot of the time. I think he feels we could do more but I'm at his house 65 hours a week. I have read from other carers that they regret that they were so focussed on care rather than quality of life. It's just so difficult, meeting all of the very many demands my dad has and also dealing with seeing him suffering so much leaves me little space to think how could I make his life better. I've written and read some people say just being thete helps, but I don't feel dad feels that , I think he expects that(which is fine) but is looking for more. Anyone got any ideas?

    2. I know this comes up time and time again and I know thete is no answer. But if I knew a timeframe of how long he had left, it would make it easier. I don't think he wants to go and don't think he will ever be at peace with it. From my perspective I can't bare seeing all of his suffer g and him always being cross with those that have given up their lives to care for him. To imagine another 12 months of this would be so hard. How can I know how long?

    Sorry I know I've asked difficult questions. Putting him into care, getting respite etc isn't an option - knowing dad was suffering would just make things more difficult for me.

  2. #2
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    Hello Skipton, I really understand your comments as I was my Wife’s full time carer, whilst I had support from the hospice, doctors and more importantly my family, the complex nature of mnd and our previous ignorance of this destructive and cruel disease was so mentally and physically demanding. I did learn that I must seek professional help if I was able to continue be her carer.
    To take a break is so important if one is to stand back and clear your mind, you need this to see clearly through the fog of emotion & grief.
    Not only will it clear your mind but make you a better carer so have no guilt about it.
    You must give yourself “Me Time” or you will become ill and need caring for yourself, (easily said but hard to practice).
    Skipton you are a wonderful person for the care you are giving and so honest to share with us your fears on this forum, remember we are all here to support YOU as is it did & does for me.
    Keep sharing, sending you my love and understanding, Peter ( lost soul) XX

  3. #3
    Forum Member Ellie's Avatar
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    Hi Skip,

    I'm sorry you're all struggling but I can understand why.

    I'm not a carer but I can understand why your Dad is frustrated - his physical disabilities and sheer boredom for a start...

    Is your Dad linked into a hospice? They offer "Day Hospice" where he can go once a week (often for a certain number of weeks) and be well looked after, see nurses, an OT, physiotherapist and do complementary therapies. Importantly, it'd get him out of the house and he'd have different faces to look at (no disrespect to you or your aunt!) Hospices are great places and are used to MND.

    Would he go to the cinema? No chat needed and it's a nice way to spend an afternoon.

    Given that your Dad refused breathing assistance, has he also refused a feeding tube? Obviously without these and him being in his 70s with bulbar onset ALS, his "official" prognosis would be towards the lower end of the scale BUT the only certain thing to say about survival is that nothing is certain...

    You and your aunt need down time too and don't assume Dad wouldn't like respite!
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
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    Thank you both! I really appreciate you taking the time to reply.

  5. #5
    Forum Member Kayleigh's Avatar
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    Hello Skipton,

    Firstly, please stop doubting youself! You are a wonderful son for spending so much of you time and energy caring for your dad. It sounds like you and your aunt make sure that your dad has everything he needs and that he is being made as comfortable as possible.

    You mentioned in your post (point 1) that your dad seems to be angry a lot of the time. I can't tell you why he is angry because only he knows that, but he has no reason to be angry with you or your aunt who look after him so well. All I can say is that he might be angry and frustrated because of the situation that MND has put him in. He might be sad because he misses the person that he was and the life he had and he is angry with the disease for taking that away from him. He might be angry because the disease has taken away his independence and he is frustrated and upset that he now has to be looked after. He might be grieving for the life he should be having now and he might be angry that the future he should of had has been snatched away by the disease. The diagnosis of MND can stir up strong emotions and it sounds like the devastation he feels might be shown as anger. Hopefully, his anger is not being directed at you or your aunt as this would not be acceptable. If it is, maybe you or your aunt could speak to your dad to let him know that you realise that he is angry but it is not your fault or your aunt's fault that he is unwell (in fact it is no-one's fault) and that you are doing everything you can to look after him.

    As Ellie has said, he could try a day at a hospice, if that is available to him. It is probably something that he will not know if he likes until he tries it. Sometimes people with MND can feel very isolated and not part of the 'outside World' anymore and so it might help if he can go out even just for a little while.

    I really feel for your dad because a diagnosis of MND is so difficult to come to terms with and accept, as I am finding myself. Hopefully, his feelings of anger will lessen and he can have some happy times.

    Make sure you and your aunt are looking after yourselves and that you accept what help you can get so that you can have time to relax. You both have hearts of gold!

    Love and best wishes
    Kayleigh x
    Last edited by Kayleigh; 28th November 2018 at 23:43.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  6. #6
    Forum Member Terry's Avatar
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    Hi Skipton,

    How do you know that his Co 2 levels are raised during the night and what are the readings?

    No one could say how long I'm afraid but maybe you can say, a little smile would be nice.

    It's easy for us to look miserable and sometimes angry. If I laugh, I can't do anything, so when I am doing things, including communicating, I often look sad.

    I'm afraid that frustration often comes along with Mnd. Sometimes we can be aggressive to a certain extent.

    Getting him out would be great, just anywhere. If you can, just tell him what you are going to do. See what his reaction is, even if you go out for a drive.

    I am afraid that only to often partners and relatives become carers and that's not what they signed up for. We feel like we are a burden on them.

    I have had a long time at this and still find the it so hard to appear happy to my wife.

    Ask him to try, and say that you know it's hard but just occasionally would be so nice.

    I admire your loyalty.

    Love Terry

  7. #7
    Forum Member Kayleigh's Avatar
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    Hello Terry, I agree with you that the challenges of MND can make it very difficult to be cheerful.

    The relentless nature of MND and the frustration of not being able to do things can make me feel very low at times and sometimes I am very 'snappy' towards the people who are closest to me - but being gently told to 'buck my ideas up' usually reminds me that a stressed and unhappy atmosphere is no good for anyone in the house! I always try to be cheerful on the outside even when sometimes I am sad and crying on the inside.

    Terry - It makes me sad to think of you looking sad, because you often cheer me up and make me smile with your wonderful sense of humour that shines through in many of your posts. I always imagine TC with a smile on his face! Don't forget to dust off your festive avatar - not long until Christmas now!

    Kayleigh x
    Last edited by Kayleigh; 30th November 2018 at 00:08.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  8. #8
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    Hey Skipton,

    Sounds like a similar situation to what I had, although it was my best friend/housemate. She was diagnosed with fast progressing MND about 12 months after she started showing signs. At which point, we were starting to see a change every 2-3 weeks. Once she had the RIG inserted, her health started to stabilise, and the disease slowed down. At Christmas time, we didn't think she'd make it to June at the rate she was going. But, the RIG was inserted in January, and she survived until mid November. Wish she'd gotten it sooner.

    Signs started around Christmas 2015. Her first neurology appointment was in Dec 2016, and she got her diagnosis on 2 Feb 2017, and passed away on 19 Nov 2018.

    I realised that her anger was about the MND, but it often got taken out on myself, family and carers. 99% of the time it was just a case of letting the anger wash over me, and get on with the job. I realised earlier this year, that if I tried to live up to her standard of what she expected of me, I'd always fail. So, I decided to do the best I could and judge myself on my own perception of what I was doing. She always wanted a 10, but sometimes I could only give an 8, and I learned to accept that an 8 was the best I could do, and not to beat myself up for not delivering a 10. She was going to be angry and unhappy regardless. But, as long as I knew I was doing MY best, that's all I could do.

    I did my best to tell her everything I ever wanted to tell her, and to spend as much time with her as I could. But looking back, I do wish I had made more time for her. The problem with MND is that it does drag on for awhile and no one knows when that last day is going to come. So we are lulled into a routine of getting on with life, and fitting caring for our loved one in between other things. I don't feel a pang of regret about this, as I knew at the time I was doing my best. If I had to do it all over again, I might spend more time with her. But alas, that's not an option and I'm grateful for the time I did spend with her.

    The last day:

    For about 2 weeks prior to the end, Ezri was constantly tired. She had been using the respirator mask most of this year, and had gotten to a point where she couldn't have it off for more than a minute or two, and got quite panicky when it did come off. Also, her anxiety was constantly climbing, and we were often increasing her anti-anxiety meds.

    Her 47th birthday was on 10 Nov, and she was struggling to stay awake the whole day. We of course had family around and stuff, and it was quite exhausting for her, more so than having visitors normally was. That should have been our first clue. But, we just thought it was the normal progression of the disease, and didn't think much of it. Also, she wasn't sleeping well at night (largely due to the anxiety), and thus was tired a lot during the day.

    Monday the 19th started out as normal. Her main carer arrived at 8am, Ezri was awake for awhile and chatting. They put a show on and she dozed off for a bit. Then was awake before noon, but was having a problem getting her iGaze (the computer that tracked her eye movements and allowed her to speak) to work, it was just typing gibberish. It has done this a few times, but in hindsight, we suspect it was her eyes that weren't working right and she couldn't get them to spell out what she wanted to say. But, she dozed back off after this, and we didn't think a lot about it.

    We tried to wake her at noon, and she wouldn't wake up. Over the next 2 hours, we phoned for an ambulance and contacted her 2 children, telling them to get here ASAP. A paramedic arrived and hooked her up to a heart monitor, and her carer and I held her hand as she slowly passed away and we watched her heart get weaker and weaker. That was at 2:05 pm. Ten minutes later, her children arrived.

    It was very strange in that at first nothing seemed terribly wrong. But things escalated quickly, and then she was gone. From her perspective, it all seemed very peaceful, I think. We did sit by her and talked to her, reassuring her that we were there and she wasn't alone, just in case she was able to hear us.

    I don't know of course if these signs, tiredness and anxiety, are true for everyone with MND. I have been wondering a lot the last 2 - 3 months how much longer it would be, but I'm not sure anyone can predict it.

    I hope this helps in some way.
    Pen
    Hanging in there, one day at a time.

  9. #9
    Forum Member Terry's Avatar
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    Hi Kayleigh;

    I often look sad or unhappy, at least that's what the one that has got to be obeyed says.

    But I don't feel that way so often. "I'm dancing inside"

    Love Terry

  10. #10
    Forum Member Kayleigh's Avatar
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    Hello Terry,

    It is not easy to look happy all the time (although 'he who has to be obeyed' does prefer me to look cheerful) - we all need to rest our smile sometimes!

    It is good to hear that you are often "dancing inside"- I can imagine TC and his good friend Benny doing the Conga to 'Do, do, do come on and do the conga. ..' (sung by Black Lace).

    Love Kayleigh x

    P.S. Are you sure you are not drinking too much fizzy pop? -- that "dancing inside" feeling could be all the bubbles fizzing around!
    Last edited by Kayleigh; 1st December 2018 at 13:28.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

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