Hello, concerned daughter

[Vicky86]

Hello all

I've been trying to get the courage to come on here for a while.

Long story short, I am an only child who has been caring for both parents since I turned 30 (I'm now 32) - my mum sadly passed away after a battle with cancer a year ago. Then 3 months later (August 18) my dad was diagnosed with MND after having surgery for spinal stenosis following him having foot drop and falling a lot - he has had previous back injuries and nerve problems which have been varied over the years.

My father no longer has any use of his legs so cannot even stand, his arms are now also very weak and he is now just about able to answer his phone using speaker phone as he cannot lift his arms at all and is losing the use of his hands too.

I guess I'm looking for:

i) some way to remain positive for both of us

ii) Some advice from other carers as to how I can help my dad with the depression he now has now and again (he won't have medication or seek support and I no longer know how to help him )

iii) An idea as to how long my dad has left as I can't bear to lose another parent, we only have each other and are very close

iv) Advice as to how I can get my dad out and socialising with family again - he has a motorised wheelchair and as not everywhere has ramps e.g. family member's households it is impossible for him to visit people. He also has to use bottles for the loo which makes going out difficult. I've tried short trips to the shops etc but understandably my dad feels self conscious and lacks confidence now, we can't really go out for food as I have to feed him which he wouldn't like in public - I'm worried that whilst I'm working all day full time he barely sees anyone as only I and one other family member visit him - not sure the rest of the family truly understand how hard things are for him

I'm worried if I can't find the help and strength to help my dad through this I'm going to lose him too - we've been through so much already

I know MND is incurable and that the medical teams are likely correct at Salford Royal but I remain hopeful that they are wrong and it is something else

It would be nice to hear some of your thoughts as carers or others with MND on here - be good not to feel on our own in this

Wishing you all the best day to day xx

[Lynne K]

Hi Vicky. I'm sorry about you losing your mum to cancer and now your dad has MND. Perhaps ring MND Connect for some suggestions about going out. I feel for you both. I'm not at your dad's stage yet so cannot really offer any advice, but your likely to get suggestions from other forum members. I go to Salford Royal too and see Amina Chaouch. Others on the forum go to Salford too, but different neurologists.

Everybody with MND is different so it's impossible for one of us to offer a prognosis. It's hard enough for specialists to do so. Your dad could get antidepressants from his GP and maybe an MND volunteer could visit him. MND Connect can explain about that. You could do with some support yourself too. Have you considered counselling? I send you electronic hugs, love Lynne x

[Vicky86]

Thanks Lynn

I hope you are doing ok considering? My dad has limb symptoms and fortunately no other symptoms as of yet. Also with Amina - thankfully she is lovely and appears very good so I do have confidence in her and that she and her team are and will continue to do the best for my dad - just wishful thinking on my part I suppose.

I am having CBT, my problem is I don't feel there are enough hours in the day for me to support my dad as much as I can and he is reluctant to accept any help re his low mood.

How do you approach things each day?

[Lynne K]

Sounds like your dad needs carers so the burden isn't all on you Vicky. I hope that your dad will take something. People on here have anti-depressants and said that they helped. Maybe talking to an MND volunteer would make your dad more open to trying medication.

I'm still walking with a walker at home but using a wheelchair outside for the last 3 months or so because it's too much risk of falling not to. I have a powered chair too but can't go out with it yet until our ramp is made wider so I don't get stuck coming out of the front door. My right hand fingers are weak but I'm typing this with it. My index finger started being funny about 2 years ago. My left hand is starting to have symptoms now. I slur my speech a bit but I did voice banking and got my voice on my ipad for when I can no longer speak.

I'm in Radcliffe and I've heard that there aren't a lot of dropped kerbs in the Borough so it's going to be a challenge when I go out in my powered chair, but I'm looking forward to the freedom. I was a driving instructor for a few years until I had to give it up January 2017.

Take care, Lynne x

[Gillette]

Hi Vicky,

Welcome to the forum. I'm pleased for you that you managed to get the courage to come on here, but sorry about your father's diagnosis. This forum is a great place for support and understanding. There is also a lot of knowledge and experience floating about, which people are happy to share, so don't be afraid to ask anything at all.

Do you or your father have contact with the MND nurses at Salford Royal, the community palliative care team, the local hospice or any other health professionals? It would probably be wise to talk to them about the depression that your father suffers from and the effect that the MND diagnosis has had on him, and on you. They may be able to involve a counsellor/mental health worker to support either or both of you.

You asked about how long your father has left but I don't think anybody would be able or willing to give an estimate. I know that's frustrating but MND really is different in everyone. No-one knows whether your father may have a period where the disease remains static so, in truth, they just don't know how long he might have.

I'm sure other members will be able to give you some ideas in answer to your points. In the meantime, I am sending you huge, snuggly electronic hugs.

[nunhead_man]

Hi Vicky

Good to hear from you and well done coming onto here - in a way I guess it might be scary because coming here in itself is some kind of confirmation?

You have my admiration for your caring.

My father no longer has any use of his legs so cannot even stand, his arms are now also very weak and he is now just about able to answer his phone using speaker phone as he cannot lift his arms at all and is losing the use of his hands too.

I wonder if a start to more socialising would be your local Motor Neurone Disease Association group who may run social events?

It can be a scary prospect seeing other people with their various difficulties, but my experience is I get lots of support as I get further into the disease.

Also, the local group may be able to put you in touch with somebody who is a local visitor who can come and see you and help you with some of the psychological and practical details?

Perhaps that will help you to remain positive?

Medication may not be a way forward - I will leave it to others to say whether this been helpful, but what works for me is talking to people.

As to how long he has none of us really know not the least because it depends, in part, what interventions we are prepared to accept to preserve our lives? For example, what kind of breathing solution might he want if indeed he has such troubles?

He also has to use bottles for the loo which makes going out difficult

There must be some way of fixing this so it is less embarrassing!

I'm worried if I can't find the help and strength to help my dad through this I'm going to lose him too

I find this difficult to respond to other than to say that in the end, your dad is in control of his own destiny and that while your help and strength will be very important to him in the end he has to accept that help and strength is what is needed for him to survive?

Warmly

[Vicky86]

I wish you all the best Lynn. I know what you mean about kernels - we go out and have problems with cars blocking pavements, tree roots and lack of dropped kerbs - it’s frustrating that people don’t think!

I hope things stabilise for you xx

[Vicky86]

Thanks Dina I will try this - the problem is my dad doesn’t want any help with things mentally - he avoids going out as he feels people will stare at him, he doesn’t feel like himself anymore, cannot dress properly as he has to wear shorts to use bottles etc - all understandable but despite my advice he won’t talk to anyone or get support for this medically and I’m feeling like I don’t know how to help him with this now

Maintain the positivity though I know it is hard! X

[Vicky86]

Thanks Andy all of this does help and make sense - my dad was always constantly cheerful so it’s hard to see the change in him. He did say today he feels more comfortable when he’s around people at hospital etc as others look the same or also have difficulties but says he can’t face going to places where people who aren’t ill will see him. We are in touch with the lovely
People from MNDA but they give us advice to speak to people and go to groups etc and my dad says it’s not for him - I respect his choices as that’s all he has control over now but I worry that both grieving for my mum and now the loss of himself in a way is too much for anyone to deal with without talking to specialists to help.

How are you finding life with ALS so far?

Wishing you well x

[Guest]

I read books whilst I still can. Watch Netflix. The more metaphysics I read about the less depressed I get.

[nunhead_man]

Good morning Vicky

Thank you for your response and sorry to be a bit slow coming back - I have been otherwise engaged for 10 days or so.

And good to see you using the forum - do keep asking if we can help

How are you finding life with ALS so far? Wishing you well x

Responding to a question like how my finding life with ALS so far this probably requires a small book - but perhaps to say the family joke is that I have good card from a bad hand, being a joke because I have slow arm onset MND and it was damage to my left dominant hand which first led me toward the diagnosis, which was confirmed 2 years later.

The short version is that I go up and down, celebrating the small victories as this morning I managed to replace a showerhead which my wife had thoughtfully taken off to defuzz and then gone to work before I had my shower.

On the other side, I have increasing difficulty in handling tools and since I am the DIY king of the household. This is leaving some things undone, which I would have previously done in 30 seconds.

I can still dress myself and feed myself although both with some difficulty - more challenges to either celebrate or mourn.

Our main preoccupation at the moment is working out where to live because the house we live in is not suitable for conversion or extension to provide for me using a wheelchair, if I need to – and I guess I will given I have fasiculations in my legs which otherwise work fine at the moment - our choice seems to be to buy smaller, locally, and keep our friends and local services, or move out to buy something larger that we can afford to do up to suit my purposes, but losing all our local connections.

I guess you will have worked out by now, that everybody's MND is different in terms of speed of progression and symptoms, although it is all themes from the same story - but the lack of certainty makes planning difficult and if I am anything, I am a planner.

Warmly