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homely60

New member
Joined
Jun 16, 2013
Messages
3
Reason
Friend was DX
Diagnosis
05/2013
Country
UK
State
Wiltshire
City
Bath
Hi

I hope you can help me in some way, one of my longest and closest friends has just been diagnosed with Motor Neuron Disease (June 5th), she has only just turned 40. So as you can imagine this is a very stressful time for everyone. She lives with her fiancee and have two children, a boy who is 13 (from my Friends previous relationship) and they have a 2 year old daughter together. My friend only lost her dad 15 months ago, then her mum this February who she was extremely close too, and her son too was very close to his gran. Her partner is hoping to give up work to care for her, he is currently off work on compassionate leave. Apart from all the emotional distress we are obviously trying to sort so many other things out for them, benefits, ordering equipment etc. The council have been out a couple of times with their team of people to discuss the alterations (DFG) etc. Basically what they have proposed is that she will need a through floor lift, the main problem we have with this is space upstairs. My friend and her partner have stressed from day 1 that the whole family remain on the same level, all having their bedrooms upstairs, so everyone is in easy access of each other etc. This needs to be done as this is important to my friends mental health to continue to feel involved of the parenting of her two children, this will keep her confidence and moral up as even her consultant said that its so important to have a positive mental approach with this illness. If they are not kept all at the same level this would devastate my friend and could be detrimental to her physical health.
So in a nutshell basically this Friday June 21st we have the meeting with the DFG team, OT, financial officer etc etc to hopefully come to an agreement to how this is going to work. In the last meeting they proposed firstly that the 2 year daughter loose her bedroom and she shares with her 13 year old brother! As if that could ever work, and its just morally wrong. we made it quite clear that would never happen. So they then suggested that the 13 year old son loose his room and he moves downstairs into the dining room. Although we stressed we didn't want this for many reasons, we know on Friday they will come back with the plans with this idea. So what I'm asking for really is any help you could offer in how we can fight against this from happening. It is there own house so i know they can have more say in what goes on.
We feel that if the son is pushed downstairs this could effect him badly, its like hes being pushed out, the son is at a tender age and has just lost his grandparents and is watching this horrific illness destroy his mum, that's a lot to deal with for a 13 year old boy, surely he would feel quite alone, scared, anxious and pushed out. It would be hard to monitor how much time he plays on his xbox, which is something he has seemed to thrown himself into, like a coping strategy, hes not a great talker at the best of times and has gone very quiet. They haven't told him yet that his mum has MND they have just told him that mum is very unwell, and shes going to get worse, be in a wheelchair (which to be fair probably needs to be in one now) and that shes not going to live as long as they would like her to. This was last Sunday they told him this and he hasn't asked any questions at all about it. So we are also very concerned hes not coping that well with it. we are going to seek some professional help for him, although im not to sure how he will take to this. I think by moving him downstairs would be detrimental to his and the whole family's welfare. But its the proving it and providing enough evidence to support us. So is there any advice you could give us, do you know of any physiological effects this could have on a 13 year old boy, we are going to read through a number of acts, eg humans right act etc to see if we can find anything in these which would back us up.
Is there any legal rights as a disabled parent to keep their children on the same level as the rest of the family?

Please anything would be of help right now and we are obviously on quite a tight time scale so any help or advice would be appreciated as soon as you can.

Our plans that we have discussed is that they build out on the upper level, basically push the bathroom out (in the new build bit) then this would create more space on the landing for the lift, turning space etc for the wheelchair. We are getting a builder out to have a look and to see if this can be done, as the lower level is already pushed out if you see what i mean so was hoping they can just build straight on top. This then would give all the space needed and everyone to be kept together as a family unit.We will be showing the team our ideas this Friday, but we know they will push for their idea because end of the day that's going to be the cheaper option. SORRY THIS IS SO LONG
 
isnt the british benifits system absolutely marvellous......so generous and the envy of the rest of the world.....yet it seems some cant be given enough........johnny
 
The problem with everyone on the second floor is that ALS patients lose their core muscles and can no longer use the stair lift. She'd be stuck on the 2nd floor 24/7.
 
Hi thank you for the responses. So if she won't be able to use the lift eventually, are you saying that she would be better off with a bathroom downstairs.
 
I am not sure why the 2 yr old moving in with the 13 yr old brother is morally wrong--many children share a room with a sibling regardless of sex. This is crunch time and about your friend not a child's bedroom. never the less, construction takes time and she may not have it. I agreed with mich completely that having an ALS patient on the 2nd floor is not a good idea long term. instead of moving the son down stairs, she and her partner should move downstairs. then she can be involved in the day to day activity of the family and not isolated on the 2nd fl. they will have to have a bathroom that is handicapped accessible and that should be on the first floor with her.

No offense, but you are stressing about the wrong things. this will be very hard on the kids but she is the first priority not them. this is not a human rights violation or a legal issue. Every ALS patient and family face these issues, you just have to work them out to the best you can---remember it will not be perfect or just the way it always was. You are a good friend for caring about her and her family.
 
I too am a bit confused about the level of stress about seemingly minor things. In a two story house often bedrooms are on different floors. They aren't suggesting removing her or the children from the home. I think it seems a bit dramatic to make this out like they are wanting to "break up the family." It isn't going to be perfect, like Barbie said. And if I'm understanding correctly that these modifications are being done with no out of pocket to the family, that in and of itself is a blessing!

However. My mom (PALS) and dad live in a 2 story home. They had it built in 2004. After spending their entire life working to retire at the lake and build their dream home, my mom does have an emotional/mental stronghold on the issue of moving downstairs. When they had this home built, they intentionally put a master suite upstairs AND downstairs just in case in their golden years, there was a need for one or both of them to have a first floor bedroom. It is huge and lovely. But that upstairs bedroom is her sanctuary. It is the bedroom she always wanted, designed by her. She is clinging to it tightly, as if she refuses to let this damned disease take one more thing from her. So my dad has priced a stair lift. We were told the same thing- you don't get much bang for your buck because at some point, she will most likely be trapped up there. Depending on how things progress, you can't take a person in late stages of ALS and just set them in that lift chair and move them up and down. We also think about things like fires. If the house was on fire, how is my dad reasonably going to get her downstairs? For now, we are playing it by ear. She is still walking and getting around and her progression has been slow. We have considered a wheelchair upstairs and downstairs so she'd have one in both places. But again, it's the physical maneuvering and safely keeping them in the lift chair during transport that's the bigger concern. It seems to me that perhaps you and/or your friend and her partner have not fully grasped what the day to day physical care for a person with ALS is like.

The 13 and 2 year old sharing a room is not a big deal and in the grand scheme of things should be low on the list of worries. I'd say he is reacting normally for a 13 year old boy. And agree he should see a child counselor just to give him a safe place to share/talk if he chooses.

You are a good friend and clearly very concerned for your friend and her family. It's early yet. I don't mean to be harsh or dismissive of your feelings, or hers and her partner. But I really think y'all need some perspective.
 
We see this all to often. Mothers around the age of 40 with young children.
 
Perhaps another idea to avoid issues of the 13 yr old being too alone, shutting down, being withdrawn... is to keep the xbox, computer, tv and gadgets in an area where there is supervision or simply remove them completely?

I also really believe that kids are gonna be ok...it all depends on how the adults around them handle ALS. I think that it is good to include the kids and to get them to help out. It is also important to get the support network setup for the family. Living with ALS, is a yucky situation to be in, no doubt. Remember to keep some space for happy moments. Wishing you the best!
 
Hi All, thank you for your responses. I suppose the thing that becomes apparent by the posts, is that we all so shocked and haven't a clue as to how to relate to this illness, in respect of my friend. It is literally days since she was diagnosed. That is why i asked the opinion of people that do know what is likely to happen and the best way to proceed. They have now finished sorting this aspect out. The only way they could do it given the size of the rooms, was for my friend to stay upstairs and they will put a bathroom in downstairs. I have been watching videos on You Tube and getting more of an idea what my friend is up against. I am so terribly sorry for everyone on here if my post offended in any way. It wasn't meant to and i hope i can keep asking for your advice.
 
Hope you do stay in touch! Cheers
 
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