View Full Version : End of Tether

6th December 2013, 14:25
End of tether today!!

Dad had a fall today (second one in less than a week), I dashed home when Lifeline notified me. I beat the paramedics who took 30 minutes. When the pulled up they sat in their cab for a bit sorting paperwork....until I pointed out that a sense of urgency might be appreciated!! Dad can't breathe properly when he's lying down and he spent almost half an hour like that until I got there to drag and prop him up against the sofa.

Bearing the falls in mind I phoned wheelchair services to get an update on the indoor electric chair. No call back. Just called again and started asking me questions about as if he had fallen out of a wheelchair!! Pointed out that he doesn't have one yet!! She then suggested that he should use the transit wheelchair indoors, that's the outdoors one which needs someone to push the sodding thing!!! How does she suppose someone with MND would get it to move by themselves.....even if he had the strength, which he doesn't, it doesn't have the type of wheels that you can push yourself!!!!

I have had it up to here dealing with people that know nothing about MND/ALS and having to explain the same things over and over again and seemingly never getting anywhere!! I've now been told they will contact the mobility centre for an update on the chair and timescale. I will believe that when I see it! Today has been stress city and it's depressing beyond belief to know that it's only going to get worse!

6th December 2013, 15:16
Hi CW,

Sorry to hear about another tumble for Dad, at least he wasn't badly injured, small comfort I know but it could have been much worse!!, as for the advice from the Wheelchair folk, about par for the course sadly, we are getting the same this end ,if that makes you feel a bit less honoured by your treatment, knowing that your not the only one that's being treated a bit half witted by those who really should know better, Just to give you a laugh My OT emailed me to say social services would expect the work to fit the ramps will be April 2014 ???, I emailed her back saying thank god I didn't have a more serious condition otherwise I would be in real trouble ??


6th December 2013, 15:38
Nice one Pete;

CW have you spoken to Mnda connect as they might speed things along. Our wheelchair service is similar, the chap doing the work is great but the admin is generally unhelpful, WHY.

I total understand your frustration as we all probably do. Living with Mnd is very bad let alone fighting an up him battle to get help. Oh joy.

Time for coffee brake, love Terry

6th December 2013, 16:12
Hi Terry,
You just have to smile, I thought wrongly taking it a day at a time, you would have the time to organise things well in advance of actually needing them, Have to say nothing absolutely nothing is made simple or easy ,when it comes to asking for assistance , I can only think that due to the nature of MND and it's total lack of anyone being aware of what that means to a person who is diagnosed with it ,in any form whether it's slow or fast progression ,I still think they have no idea what it does to the person involved! and if another one tells me how well I look !!!, or that I am doing really well Considering ,Considering what !!!, if you think doing well is measured by being wheeled in for appointments that achieve nothing ,and then offered another in four months ,just to see if you last that long !!, so I tend to smile at them now and leave as asking anything is futile and knowing nothing is going to change, I live day to day and no longer ask anymore .


6th December 2013, 16:24
Oh Pete....that really does sum it up. I take dad to appointments that are a total waste of time and energy and then they schedule another one a few months down the line which will be equally as useless!

I have one to take Dad to in January....now that he can't do steps at all I haven't actually worked out how I'm going to get him out of the house and to the car yet! The OT did come round last night and took measurements for ramps but working on timescales for the electric wheelchair which I've been told will probably be January.....who knows?!?!?

6th December 2013, 16:31
Hi Pete;

You just have to smile if you can. I am normally very out of order with people, you can when you have to use a talker. I am very sarcastic but get away with 99.9% of it by smiling. At the hospice I attack so many of the staff and patents, but they all love it. I get so much jollity back from all of them.

When I see my specialist I ask him if his drinking too much or that it's about time his gone on a diet as he has been putting on weight, ironically his daughters have been saying the same things.

Many a true word is spoken in jest.

I always get the same as you, "you're doing so well", or "you look so well".

Love Terry

Hi CW;

If the appointment is not important, cancel or postpone it nearer the time. I would have thought that you would be in your rights to get an ambulance to take your dad to an appointment. It might stir things up and get things moving if you ask, maybe his doctor for one, especially if it's a 50 mile trip.

Try it and see, love Terry

6th December 2013, 16:41
Absolutely every comment rings so true! We were promised a top of the range, all singing all dancing indoor/outdoor wheelchair which didn't and didn't appear, then we were told eventually there were funding problems! We waited so long we bought quite cheaply a super little scooter for indoors which I love, wouldn't be without. They have now supplied an indoor electric wheelchair which I find a horrible little beast of a thing, I use the scooter! NHS won't supply scooters, but worth looking at if your home would take a small one. Sorry life is so fraught! Joan

6th December 2013, 16:48
Funnily enough Terry the hospital trip will be around a 50 mile round trip....! They insist on us seeing the chest specialist in Hastings rather than somebody in Eastbourne (which is literally 5 minutes away).

If I can bring myself to talk to the GP I will ask about hospital transport. There's a chance they won't let me travel with him though so I still might have to drive. I will fight that though as Dad can't communicate I want to be with him!

6th December 2013, 16:59
Get on, his GP, CW;

You never know, he might see the need to help and actually do something useful, especially if he has to pay the bill. Do it soon please and let us know. You need to be with dad as if he has any problems you know what to do. When you see his GP,don't be worried about being emotional, a few tears often helps, and tell him the worst, not how things are going when all is well.

Time for coffee, you have one too, Terry

6th December 2013, 17:16
You could try renting a powerchair for now. I bought a cheap second hand one. It is covering the months between becoming unable to walk, and ordering the NHS powerchair, and getting it, 2 months so far. There is a company called powerchair hire which has weekly rates. Use Google. Their smaller transportable one is like mine and great indoors. You can take it to bits and put it in the car. There is a bigger one too. It has given me a massive increase in independence and falling is much less likely. There must be others but I didn't look far. Mine does not have much back support but I am ok up there, my legs are the problem. I have bought ramps too, and an amazing raised toilet seat with handles. Waiting for NHS or OT help wastes time. If you can afford it, or Dad can, there are ways to help yourselves. Luckily I can talk which helps a lot. Good luck. Xxx

6th December 2013, 22:37
Hi cw. So sorry to here about dad and what seems poor response from people with a duty of care, i have just said on another post that there is a post code lottery out there which is just unfair, we save thousands of pounds looking after loved ones yet turn up at a and e the worse for drink and they still look after you. Sorry if im ranting on but you deserve better lots love gerald

7th December 2013, 00:49
The MNDA helpline was great sending me a carer pack (for Dad, myself and the home care) they also sent an info pack to Dads GP, as it was explained many Drs have very little or no experience with MND.

Dad thought the pack was far better than the folder he was given when diagnosed.

OT suddenly action stations as the last visit was when Dad still driving.

They turned up with equipment that was redundant before it was out of the bubble wrap!

We made them take it away but got them to leave the bubble wrap (it was the big stuff) and Dad enjoyed popping it for the rest of the afternoon!

A standing aid arrived this week and OT has given a demo to the carers.

We are fortunate enough to live 10 mins from the Hospital and I can get time off work to take him for appointments as the hospital transport was a bit hit and miss (but it was available).

Stay strong – P.

7th December 2013, 10:33

Sorry to hear of your very frustrating and upsetting situation. Was wondering, do you have local medical supplies stores where you can purchase a wheelchair? I can’t understand the waiting and waiting for it? Why the wait? Are they out of stock on wheelchairs in the UK? I can ship you one if you want, might be a bit costly on the shipping because of the weight, but could have it there in less then two weeks.

Also, how the hell are your EMT folks allowed to sit in the ambulance and do paperwork first!? You should consider contacting their manager that is totally unacceptable, it could have been a life or death situation going on in your home for your poor Dad. I really can’t comprehend this… ?? SMH (shaking my head)

Stay strong
CC xoxo

Ken Woodland
7th December 2013, 22:50
I have cared for my wife for the past 2 years her condition has badly deteriorated. No movement in her body mussel's at all. Speech is very very slurred. I am now becoming very depressed, I don't want to saddle my sons and their wife's (who are very supportive) with how I feel they have young families to care for.Just need to share my thoughts with others going through the same. Suggested that carers come in for an hour or so each day so that i can do what I want, but my wife frets terribly if i am not there. Just need someone in same position to exchange my thoughts with privately..

7th December 2013, 23:01
Hi Ken, I am sorry that you are so low but it is understandable as you are trying to shoulder a massive burden on your own. You do need carers for many hours a day and you can plan a sensitive transition with you staying in the house until the carers are competent with your wife's needs. I care for my husband who is not as disabled as your wife. I have no relative living nearby but an about to start a care package of 5 hours a day. My son, who lives 200 miles away, is here for the weekend and trying to contribute as much as possible. Have you got a sensitive team of professionals supporting you? Have you spoken to MND Connect? Could you ask a bit more of your loving family? Let us all know how we can help.


8th December 2013, 00:46
Ken - as a son with a family – tell them.

My brothers are not involved with Dads care as he tells them he is managing (because they run a business and have enough to think about!)

To help my step mother I introduced a care package less than two weeks ago to such resistance that I thought it was going to fail – it is now (in such a short space of time) the best thing I have done since the wet room.

Dad is washed dressed and fed in half the time and the two of them are able to get the most out of the rest of the day.

Two weeks ago he was too tired to do anything and each day morphed into the next.

I took him out today and he is now full of the Christmas spirit after seeing all the lights on and shops ringing out festivities.

He was drained when we got home but said he had enjoyed getting out and hadn't felt like Christmas until today.

8th December 2013, 00:55
Hi Ken,

Sorry to hear about your situation. My wife died in 2012 and I was her primary carer but continued to work until after she died. Because of this we had a team of friends and carers who came all the time in her latter stages and generally I was on my own from 5 each day until 9 the following morning and all weekend. I found that and work quite a strain at times but the carers we had were absolutely brilliant and there was always laughter in the house.
I think as suggested you ought to introduce carers gradually into the situation so that your wife comes to know and have confidence in them. You need some me time for everyone's sake as you are getting to a point where you will be unable to cope and your wife will find change thrust upon her instead of gently evolving.
If you are unsure how to best implement change then ring and talk it through with mnda connect. I am sure they will be able to suggest the best way forward but do not leave it too long.


9th December 2013, 11:57
John I can't tell you what a relief it is to find someone that works full time too. I don't have carers in yet but we will have to give in at some point. I can't give up work, when Dad does go I still need to support myself etc. My job is important to me and in all honesty provides me with a break.

It's so good to hear that someone else has worked full time and cared too......I don't feel so guilty now!

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