Page 2 of 2 FirstFirst 12
Results 11 to 20 of 20

Thread: Dilemma and unsure of the way to go.

  1. #11
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Location
    Lambourn Berkshire england
    Posts
    96
    Hi Kayleigh.
    Another sleepless night lol.
    I know exactly what you mean about feeling isolated, Mary was diagnosed with bulbar palsy onset ALS, unable to speak ( for about the past 10 months ), can't use her right hand, luckily ( if that's the correct phrase ) she is left handed so can communicate by writing things down or use easy speak on her iPad, can't walk unaided ( Zimmer frame ) ect. A lot of the time she says it's like living in a prison cell just staring at the same four walls and watching TV. I do take her out in the wheelchair when the weather permits for a walk around the village so she can get some fresh air and meet people , but if I could get a WAV I could take her for little outings for the day, she loves the wildlife park which is only an hour away, that's why I'm leaning towards the retirement option I think, the WAV.
    Also as she can't swallow and everything is pegg fed ( by myself ) so I only have to cater for myself, so it's usually oven ready stuff or a sandwich and a tin of soup, no doubt I will be told I must eat properly, but at the end of the day Mary is my main concern and I have to try to make her life the best I possibly can.
    I know there are a lot of people in a worse situation than I am on here, but even as a carer I sometimes feel alone, I think the worst part ( except for Mary's condition ) is the lack of conversation and social life.
    Sorry I went on a bit there.
    Best wishes
    Tim and Mary

  2. #12
    Forum Member
    Join Date
    Jul 2018
    Posts
    286
    It be must be so hard for you. A wav would help enormously. My late mum had alzheimers and had to go into a home when she was falling all the time (not long after stopped walking). We bought a second hand wav in 2011. She passed away Oct 13 but we kept the vehicle. It is a 2007 fiat doblo, it has room for the chair and 4 seats (often they are converted so only 3). We only paid about 5k at the time. It meant we could get Mum out to Mass , local parks , places for a coffee etc. Its probably worth nothing now! but as a family we all use . I think it would be lovely for you both to get out and about .

  3. #13
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    661
    I'm also wanting a WAV Tim and Shrew. I have a motability Ford Grand C-Max and my light weight travel wheelchair gets lifted in and out by the 100kg hoist that I had fitted. Unfortunately my powered wheelchair is too heavy for it at 124kg. I love the countryside and a WAV would enable me to go out with my husband where he wouldn't have to push me. I've been saving up for the up-front costs on a motability WAV, potentially from 3500. But two problems put that at risk. First I need to pay most of the cost of my soon to be purchased dual motor rise and recline chair. I cannot afford both the chair and a WAV. Secondly, I will have to buy a new rear passenger seat for my current car seeing as my husband spilled a tin of paint on it back in November. I don't know how much that will cost. Also, I'll need to pay Ford Motability in Bury some compensation for ending the 3year contract very early. I haven't had the car a year yet. I paid about 1424 up-front cost for that. Are there any charities about that may help with my up-front costs for a WAV? Thanks, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #14
    Forum Member
    Join Date
    May 2018
    Posts
    303
    Hi Tim and Mary,

    Firstly, Tim you are doing a wonderful job of caring for Mary. I agree that all the carers on here are so selfless and amazing. It is so hard to watch someone you love struggling and getting worse and things must seem even harder when you have had a sleepless night. You probably know you should eat properly but it's hard to motivate yourself to cook for yourself, I suppose.

    It would be really good for you and Mary to have a WAV and get out and about, even if it's just for a drive. I can get really low if I have not been out, like last week when we dare not risk the snow and ice. Theres too much time to think and daytime TV is enough to make me want to cry, anyway ! Hopefully you will be able to get out when the weather is better.

    It sounds like you are getting lots of advice about finances.My husband was lucky , if that's the right word , to take his pension early but we did see some advisors about the future and and spoke to the MNDA.

    Best Wishes to you both.
    Love Debbie x

  5. #15
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,980
    Hi Tim,

    Just a thought...

    When you say you bring Mary out for walks locally, do I take it she has a manual wheelchair?

    If it is, given that Mary is weight bearing and can use a zimmer, I wonder if she could transfer into the passenger seat - with the aid of transfer turntables if necessary - until you sort out a WAV? (Turntables can be used tohelp Mary transfer from a wheelchair to the car seat, then to swivel her legs into the footwell once she's sitting down)

    If she has a powered chair, maybe her OT can provide a transit chair for now and you can at least get out for a drive and go further afield for your walks.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    732
    Hi Tim,

    Hopefully, you will be able to get a WAV in the very near future, because it should enable you and Mary to get out and about so much more. The weather should get warmer in the next few months (hopefully!) and so it would be great if it was easier for you and Mary to get to your local wildlife park etc regularly.

    I have been thinking about you and Mary, and I'm sorry that I can't offer you any practical help with things. All I have to offer are a few suggestions, in the hope that they might help.

    I was thinking about you and Mary not having much company during the day. The MNDA has Association Visitors and there might be one of these in the Region where you live. Understandably, it is not so easy for us to get out and about to see friends and family, and so I think its great if one of their Visitor's can visit us at home for a chat. You are probably busy with things at the moment, but sometime in the future, you might want to phone MND Connect to find out if one of their Visitor's could pop in to see you and Mary from-time-to-time.

    If Mary hasn't been referred to your local hospice, this is something you might want to consider. In my experience, the people at the hospices are very kind and they are passionate about wanting to improve the quality of life of people with terminal illnesses. I notice that you live in Berkshire, and have provided a link to the website about Sue Ryder hospices, including those in Berkshire (just in case you don't already have info about them):-

    https://www.sueryder.org/how-we-can-...f-kent-hospice

    I am sorry to hear that you don't get much sleep. It sounds like Mary doesn't have a good night's sleep either. If she is unable to sleep because she is stressed/anxious about things, her GP might be able to prescribe some medication to reduce her anxiety and hopefully this would enable her to sleep more easily. I recall that Mary is currently taking medication for 'emotional lability', but it must be quite distressing for you and her that she still gets upset and tearful in the evenings. Perhaps her GP can adjust the dose of her medication so that it is more effective?

    I do feel for you and Mary, because like many of us on this forum, we have to cope with everything with little or no help from outside carers. If the only funded care that you are provided with is 3/4 an hour a day from Monday to Friday, I hope that there is a way of getting the weekly hours of funded care increased, so that you get more time to relax.

    I understand that Marie Curie nurses can sometimes provide some night cover, so that a carer can get a good night's sleep - and this can be organised via a GP, district nurse or specialist nurse. You might want to consider looking into this option, now or in the future.

    Please look after yourself Tim, and please make sure that you are eating regularly (sorry for being a bit of a 'clucky mother hen'! - but, sometimes, I worry about the carers who spend so much time caring for others, that they have very little time to look after themselves).

    I hope you and Mary have a lovely weekend. Hopefully, you will have the opportunity to relax and enjoy watching the rugby on TV, if you want to.

    Love to you and Mary,
    Kayleigh x
    Last edited by Kayleigh; 8th February 2019 at 19:56.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #17
    Hello there, you may know this but motobility do offer grants for the upfront payments, phone and ask. Also if your present motobility car is no longer suitable they will let you return it before the contract ends with no penalty.
    My husband has a Peugeot WAV, horrible horrible vehicle, he has permission to return it but the way things are going we're sticking with it for now.

  8. #18
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    661
    I just read motability rules. They state a car can be exchanged for a WAV up to 4 months prior to the end of a contract for up to 250 admin fee. I couldn't find info of exchanging very early. But my case would be complicated by the fact that where I got my motability car they don't do WAVs. So, I'd have to end my contract with whatever penalty, maybe 250 and loss of good condition bonus (the same as if you give your car back and end participation in the scheme). I'll keep my Grand C-Max as long as I can then make enquiries. But I wish I had a WAV now so that I can go out in my powered wheelchair. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #19
    Quote Originally Posted by Lynne K View Post
    I just read motability rules. They state a car can be exchanged for a WAV up to 4 months prior to the end of a contract for up to 250 admin fee. I couldn't find info of exchanging very early. But my case would be complicated by the fact that where I got my motability car they don't do WAVs. So, I'd have to end my contract with whatever penalty, maybe 250 and loss of good condition bonus (the same as if you give your car back and end participation in the scheme). I'll keep my Grand C-Max as long as I can then make enquiries. But I wish I had a WAV now so that I can go out in my powered wheelchair. Lynne
    Phone Motability they will want you to have a vehicle to suit your needs.

  10. #20
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    661
    Thanks MM's Wife, I will phone motability after we sort out the stained passenger seat (white paint on it). Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •