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Thread: Overwhelmed

  1. #1
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    Overwhelmed

    Hello,

    Apologies for the rambling of this post but I don't know where to start.........My mum was diagnosed with MND back in January of this year. Since that day she has cancelled every single healthcare appointment she had and has not spoken to any healthcare professional. She is now walking (just) with a walking frame but only manages 10 meters or so before she has to sit down. She refuses to even contemplate a wheelchair even though this would make her and our lives much easier and consequently, I can only visit her in her house, rather than take her out and do fun things. She lives in her own house and has a friend who is lodging with her at the moment - thank goodness as he has been a godsend. Her speech is becoming a little slurred in the evening. I have two small children of 11 months and 3.5 years and find it hard to juggle their lives with seeing my mum and at the moment only manage to see her once a week. I spend the rest of the time feeling guilty for not seeing her, worried about her being alone or having an accident. My mum not only refuses to talk about her diagnosis or see any healthcare professional, she is also starting to push her friends away as she is embarrassed by her condition. This is putting extra pressure on my sister and I I as we are the only people she will let help her, but we cant do it all. I feel so completely overwhelmed and desperately sad that my lovely mum is doing this to herself.

    I feel like I've tried every avenue but I cant spend so much energy on trying to change her now when I really need to focus on trying to put things in place to help her........even though she will initially refuse everything. Because she is not seeing anyone professionally, I am struggling to know whats going to happen, how quickly, what to expect, the best practical things she will need in her house etc.

    I'm not sure what I'm expecting anyone to say but just feel the need to share with people that may be going through the same thing. How do I help her come to terms with her condition? How do I talk to my children when their nanny keeps telling them she just has a bad leg and will get better? How do I talk to my mum when she just says its her bad back? How do I even do anything when I'm allowed to even mentioned MND?

    Ramble over, thanks in advance for.......giving me a place to ramble.

  2. #2
    Forum Member BlueEyesOhio's Avatar
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    Hello SWhite,
    Sorry you're having such a hard time. I guess I am not sure what to say except - there are some really special people here. We will be here to help you in any way we can. I was diagnosed with MND about 5 weeks ago. It's been really a hard road so far. It is such a shock at first. And at times I have thought, "I just can't believe this is happening to me" I am feeling more like I am getting used to it a little.

    I think your mum's way of dealing with it is just to ignore it or deny it. One of my daughters has dealt with it in the same way. I told her about it and she doesn't want to talk about it or ask questions or anything. My other daughter wants to know everything about it. People are SO different the way they handle things. I am hoping that with time your mum will accept help from her doctor.

    Again, I am sorry you are having such a hard time.

    Lynne
    Be Strong and Courageous!

  3. #3
    Forum Member john's Avatar
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    Hi swhite,

    Sorry you find yourself here. If you read about people in this forum you will find quite a number are carers with partners who like your Mum don't want to know about what lies ahead. Their choice but it leaves the carer as the one who has to make the decisions and deal with the forward planning. It sounds as if this role is going to fall on you and your sister but you are going to need help. You could ring mnda connect who have their contact details under the tab above. I think they only operate Monday to Friday so you may have to wait until Monday but if you have lived with the problem since January a couple of days won't make much difference. Ask for their advice because it sounds as if someone needs to talk to your Mum. It maybe her own doctor or a practice nurse or someone from the local mnda. I am sure everyone will respect your Mum's right to not know the details ahead but they can give advice on managing problems as they crop up. There is a lot of help and advice available but you need to ask. Usually a team of medical professionals made up of a neurologist, physiotherapist, occupational therapist ,dietician and speech therapist are assigned to your Mum and periodic meetings are arranged so Mum can ask questions if she wishes or they can monitor her progress and offer advice as to how to deal with particular difficulties as they arise. You should have a local wheelchair centre attached to social services and/or the local hospital and they would help with your Mum's needs if asked. Manual wheelchairs are not generally difficult to get hold of quickly but electric ones are a different matters and require persistence to come through.
    I hope this is helpful but I think you really need to sit down and try to persuade your Mum to accept some help in dealing with her situation as it develops.

    John

  4. #4
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    Welcome Swhite, and sorry to hear of the struggles and challenges you and your family are experiencing. I must say much of it sounds very familiar. My dear friend has been in denial for quite some time now. Honestly I have learned, and come to understand (with time) along with the advice and the wisdom of others on this forum the best way to handle her denial and decisions is to let her be. Itís her journey with this illness, and her choices to make, maybe not what you want for her, but itís what she wants for her and this is what is working best for her to cope, and handle her diagnosis at this time.

    If, and when the illness progresses she will have no choice but to deal with the symptoms. If she is still managing independently for the most part now, then good for her, let her! Continue to give her your love and support, Iím sure she knows her daughters are there for her no matter what. As far as pushing her friends aside, it's understandable her reasons why, and the ones that go when she pushes are not worth much anyway so no real loss there.

    Agree with John and you should consider his advice. Much of the planning ahead will fall on her family and carers. Do hope you take his advice and call upon the mnd experts they will lead you down the right path that you will need take your Mom on when she is ready.

    The very best to you all in the days ahead.

    CCxxx
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  5. #5
    Forum Member gerald's Avatar
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    Hi s white and welcome so sad at reading this post and how difficult it is for you dealing with this dreadful disease is hard enough but if a loved one dose not accept things it's really hard and you also need help to adjust. I do not know where you are branch wise but there may be help there and of course mind connect. Would reading some of the posts etc from this wonderful site give her hope that she and you are not alone we can all still do things and of course children need to see nan doing ok. Do hope you can win through rant here anytime w e are all routing for you and the family. Sending hugs as well. Gerald

  6. #6
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    Your Mum is in denial which is very common in people with serious illnesses, in fact we all go through this phrase at some point. My advice would be to get someone to talk to her, maybe a person from the MNDA locally. Explain how much support and help there is, not only from the medical profession, but especially from the MND Association. Your Mum probably feels ashamed and embarrassed about her illness, this is understandable. She needs to turn this around to positive thinking and living with the disease.

  7. #7
    Forum Member Terry's Avatar
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    Hi S White;

    I would be honest with your children as they will probably accept life for what it is.

    Cc, managed to make it a bit of a game with her friend by having two mobility scooters and having a race. Also she down loaded "speak it" on her I Pad and used it to talk to her.

    I don't know what sort of age group you all are but maybe you and your sister could do a similar thing, both down load it and go around your mum's and use it to talk leaving your mum struggling to talk. Similarly get a wheel chair and push one another around in it.

    It would be nice to get things in-place for your mum but I can see it won't be easy. She would have a quality of life if things get organized but without it you will all suffer.

    Best wishes and welcome to the forum, Terry

  8. #8
    Forum Member Lycanthrope's Avatar
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    Hi S White x welcome to the forum. Sorry to hear things are so difficult. All you can do is be there for your mum which is what you're doing. Maybe with time she'll be more accepting of help from professionals, but in the meantime this is a great place for help and support. Best wishes to you. Becky x

  9. #9
    Forum Member Jock's Avatar
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    My heart goes out to you SWhite as your Mother could be more helpful. I sincerely hope you and your sister have a strong relationship and can work together to help ease the strain. John gives some excellent advice. I would get talking to qualified counselors at MND-Connect.

    Ramble, rant, whatever........anytime you want. Open door(s) here.

    Kind regards

    Jock

  10. #10
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    Thank you so much everyone. I had no idea how cathartic it would be to put my feelings in black and white but then to have so many of you reply in such detail was so helpful in getting my thoughts together. I felt like crying just because you had taken the time to write! I'm slowly trying to get Mum to talk to someone but she wont even let me mention MND so I think its a long way off. Mum had a fall last week when she was using her walker and banged her head; she was fine but its understandably made her extremely anxious about going out. I've approached the issue of a wheelchair but she wont have it......perhaps as deep down she knows that it may be the end of her walking? She said it was too depressing to use a wheelchair which I understand but the alternative is sitting in the house often on her own which I think must be even more depressing. I think you are right Trevorhb that she is ashamed and embarrassed.

    I had a couple of questions.......

    Ramps - I have started looking into getting mum a ramp outside her house (without her knowing of course!). I've seen the temporary ones that look like plastic sections that mesh together depending on the height you need (if that makes sense). Any advice on if these or any others are better than others??

    Secondly, my mum seems to be suffering from her index finger locking in a bent/downwards position. I've seen her trying to hide the fact that she has to force it back into a straight position. Is this something that a lot of people with MND get and will it start to happen to her other fingers??

    Finally, I've been in touch with the MNDA connect and am amazed at how fantastic they are. They've given me advice on talking to my 3.5 year old and put me in touch with the local AV worker. Thanks all for advice on this.

    S

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