Wheelchairs

[sussexsue]

Hi

After all your excellent advice on hearing aids, I am now going to test you regarding wheelchairs.

Mum is 84 with AD, living with us, and all things considered is pretty fit (she always has been). As well as AD she has epilepsy which has recently reared its head again after nearly 20 years. It seems to be triggered by a mixture of being too warm and getting stressed. Mum is not a wanderer, so previously if I went somewhere I could leave her in the car for 10 minutes or so. However now that the epilepsy has recurred I dont think this is a safe thing to do.

She also has an athritic knee which is affecting her mobility. She refuses to do the physio and whereas before AD she would just have soldiered on, now she resists walking anwhere. Her gait has changed into that of a shuffling drunk. She has had a CT scan to rule out a stroke, but she is dropped on one side and has poor spacial awareness. She has had two full mobility assessments, when on both occasions she acted as though she was the fittest in the room. She can still easily touch her toes, get in and out of beds/chairs, etc, although makes hard work of stairs. Of course when we visit any medics she forgets she has this problem and insists she loves going on long walks - hmmm.

They tried her using a stick as assistance, but should could not co-ordinate it and we agreed it would be more trouble than it was worth. They suggested a wheelchair which she was very keen on. We have now received a letter for the wheelchair people to come and do an assessment.

So you may think, what is the problem. Well I feel a total fraud. I have the feeling that once we get it she will refuse to use it. Also when they come and assess her I am sure they will think she is far too fit and mobile to warrant one. Part of me thinks they would be correct, because it is more about her refusing to walk for more than 5 minutes, rather than being incapable of doing so. However when she gets stressed about walking when we are out, it tends to lead to one of her funny turns, which in itself can lead to a full fit.

Now on a day to day basis this is not a problem, but it does mean that we cannot really go out anywhere. Even a trip around a supermarket or a garden centre has to be kept to about 10 minutes. Tomorrow we are going up to visit my son in London and will need to do a small amount of walking. It will be interesting to see how she gets on.

So what advice do I want from you lot ? I personally feel it is wrong to be using NHS resources to provide mum with a wheelchair and would be more comfortable with her just buying one. They dont actually seem that expensive. So any suggestions/advice on what to get ? It will only be needed on a casual basis and she would always be pushed. She is a small slim lady, but I would want something that could be pushed easily by peole of different heights (I am 5'4" and hubby is 6'4"). I dont want to go down the hire route.

I appreciate you probably cannot recommend actual makes/models, but some general advice would be very welcome.

Thanks

Sue

 

[gigi]

Hello Sue...

First of all don't feel like a fraud about the wheelchair. I've had one for Eric for quite a while now..and he's only used it on 2 occasions..but it's there if I need it. He too has been reluctant to accept it...but as time goes by he seems to be more accepting of the need for more help as his mobility decreases.

Ours is a standard supply NHS model for outdoor use which does collapse down to fit in the boot of a car..but it's quite heavy to lift in and out.

If you're keen to go down the route of buying one yourselves, why don't you have the wheelchair assessment...get the required measurements etc...and pick the brains of the people coming to do the assessment?

Love xx

 

[nellbelles]

You could first try using the ones for use of customers at the bigger supermarkets,

If you decided to buy be wary of the very light ones that fold very small, they are a nightmare for the person in them, my friend actually was thrown forward out of hers.

Nothing is ever simple, at least the NHS one will be sturdy, and it can always go back if necessary.

 

[suzanne]

Wheel chairs

I was in a similar dilemma, my mum has gotten increasingly weary of the short walks and going around supermarkets etc so I applied for a wheelchair stating that we would use it 3-4 times a week and [surprise surprise] was turned down for it. The lack of foresight on behalf of the wheelchair group is amazing... they have not taken into consideration the deterioration of the disease and the fact that in not having a w/chair I am a virtual prisoner in the home as my mother's carer. Anywho, after tearing the letter up in a rage I eventually contacted my mother's CPN who got in contact with the EMI occupational health worker who has provided us with a loaner w/chair for 6 weeks and has written a strong letter of appeal to the wheel chair provider's of wiltshire. I have to say that mum has enjoyed the walks down our country lanes where there is very little traffic and going at a pace that she deems slow enough, she has also enjoyed the w/chair in the supermarket as she no longer has to depend on the shelves for rest and support. It is a step further down the line of the disease but it does make it easier for us both and we are not stuck in the house all the time. Suzy

 

[larivy]

hi sue tell them at the assessment what you have told us. my mum is 84 we have a lomax Unilite model it is lighter then most it has large quick release wheels. try not to get one with small wheels they may seem better for putting in the car but as i have learnt the hard way big wheels are better. my mum is only 8stone. im 5ft 9 and my sister in law is only 4ft 10 but she manages it fine. you are entitled to one so dont fill a fraud good luck larivy

 

[zoet]

Have the wheelchair. Its actually a much better time to have one BEFORE someone goes off their feet and an OT will know this. Even if she were fine over a short distance, a wheelchair is appropriate for a lady with your mums disabilities, age and illness. You are not a fraud. Even if you only used it once or twice, that would be once or twice you NEEDED to use it and that justifies getting one.

 

[Nan2seven]

Dear Sue - I have just got home from wheeling Brian round a local garden centre in our wheelchair. We bought it in March, before he really had need of it, but he was finding it harder and harder to walk for more than about ten to fifteen minutes. He is now very glad of it and has moved from "I hope I don't meet anyone I know while using this" to "Thank goodness we have it."

We did, in fact, buy one with small wheels (a Karma) and manage very well with it (Brian is 13 stone), but keep a keen eye out for dips in the pavement/promenade and small changes of level. The back handles fold down and it squeezes together, like a director's chair, but I find I do not have to remove the wheels to get it into the back of my small car, a Citroen C1.

It is SO important to us both that we get out every day and we do - somewhere every morning. Sometimes Brian walks, but if we go to the beach (which we do most fine days) then we use the chair. And if elsewhere, as this morning, I am not disappointed by not being able to browse to my heart's content because he cannot walk any further. Go for the wheelchair and I am certain that you will both be glad you did.

Love, Nan XXX

 

[sussexsue]

Hi

I am learning to really love this forum. Such good advice and suggestions from each and every one of you. Big big thank you.

So my resolve is to see how we get on tomorrow on our London trip and then phone up the Assessment people on monday and accept an appointment. The worst they can do is say no, but may get some good advice along the way.

We have moved to the beautiful West Sussex countryside and mum adores being driven around (bit of a tree obsession) and it would be so nice for us all to be able to get out a bit more. She is a happy AD sufferer and I would like to make the next few years (or months) as fulfilled for her as possible.

Once again thank you to everyone who took the time and trouble to reply. Will let you know how we get on.

Sue

 

[TinaT]

Sue, I havn't read through all the replies so I hope I'm not repeating anything already said to you.

Don't worry about whether the OT people think you need one or not. If you have asked for one then obviously you DO need it!!

I have just bought my husband a lightweight wheelchair which folds up enough to fit into the boot of my Toyota Corsair (just). I paid for it myself but have been told that had I asked, I might have got it free.

It is still on the heavy side for me but easier to get in and out of the car which is a big plus as I'm always on my own and have to man handle the chair at least twice when out with my husband Ken.

My mother also refuses to use a wheelchair but I tell her that I'm in a hurry and that I can't take her unless she sits in Ken's chair. She grumbles like mad and it takes me some force of will to persuade her, but once in it, I think she really enjoys the comfort.

xx TinaT

 

[Cate]

Hi Sue

I bought a wheelchair for my mum, she loved to go out, but her mobility had got quite poor.

I have to say the first day I turned up at the NH with it, I got the evil eye, she wasnt going in 'that'. However I told her I was taking it with us to put the shopping in!

Well half way around the park she had to stop, her knee was playing up, so I suggested she just have a sit in the wheelchair, Im still getting the evil eye, but sit in it she did.

It took a couple of trips to get her to sit in whilst I actually pushed her in it, but in the end she took to it no problem at all, I did end up using a bit of blackmail, no chair, no outing. In the end she was quite happy to direct the pushing operations.

Incidentally I bought one of the 'pushing' type with the small wheels. The back collapsed down and the wheels came off to get it in the car, and it was quite light, just shop around Im sure you will find one that is OK.

Best wishes
Cate

 

[Sandy]

Hi Sue,

We were contemplating buying a wheelchair for my MIL (84) when she entered her care home a year ago. She didn't need it for day-to-day purposes, but we have found it good for trips to the local shops or longer visits to places like garden centres.

We most recently used it during a trip to the hospital for an appointment at the eye clinic. It was invaluable there where seating options are not always comfortable and where you might be directed from one area of the hospital to another for extra tests.

When I initially visited the local mobility shop, the owner told me about the wheelchair voucher scheme which gives you a voucher for an amount equal to the cost of an NHS wheelchair, but you can use it at any approved supplier of wheelchairs and top it up, if necessary, to purchase the chair that you want. You then own the chair, but are solely responsible for it's maintenance.

You can read more about the options here:

http://www.direct.gov.uk/en/DisabledPeople/HealthAndSupport/Equipment/DG_10038381

Take care,

 

[Izzy]

I got an NHS wheelchair for mum. She has a love/hate relationship with it!! She constantly says she doesn't want to get in it and what if someone she knows sees her in it etc etc. Another part of her knows that she wouldn't get out anywhere if we didn't have it. We now have to bring the wheelchair right to the back door of the house as the walk from the car through the garden to the door is too much for her now, even with a zimmer (she's nearly 92 though). She was measured for the wheelchair and I had to say what kind of car we had and I think it was tailor made for her. I just have to phone up if there's anything wrong with it and they come and fix it - eg very squeaky wheels recently and when the guy came he said it need 2 new small wheels and changed them on the spot. He also replaced the back bit as it was getting damaged due to constant folding up etc. I think we are getting fantastic service. Mind you she wants 'one of those with the big wheels which I can operate myself' or an electric one! In short - we couldn't do without it.

 

[Sam Iam]

Hi Sue,
I work in the NHS with Physiotherapist's who give W/Chair's out on a regular basis for reasons like your Mum's.
Life has to be made easier and a lot of professional's realise this.
Hope this helps xx

 

[Willowgill]

We got Mum a wheelchair about 2 years ago when her mobility was becoming a problem and we found she could no longer get round the supermarket pushing the trolley and it was a godsend. She was reluctant to use it at first saying she didn't need it but eventually accepted she had no choice and a few weeks ago we also got one for Dad as his mobility is now beginning to be a problem. We do plan on taking them both out in them together when we get the chance but now Mum is in the CH it will not be so easy - they do seem to get them all mixed up as well so she could end up with someone else's!!

 

[TinaT]

They have their own wheelchairs in Ken's Care Home for every day use which they maintain in good order. I keep Ken's chair permanently in the boot of the car and never take it into the home.

xxTinaT

 

[sussexsue]

Well today totally made my mind up.

We drove up to London to visit my son and his girlfriend. We walked to St Catherines Dock for lunch (5-10 mins). By the time we got there I had to support her as she was so off balance. We had lunch and went on a boat trip on the Thames. It was a lovely day and we all had a brilliant time.

However the walk back was a nightmare. By then mum was really off-balance and felt she was falling forward all the time (which she was). We kept sitting her down and had 2 of us supporting her. With just a few yards to go she completely collapsed and I had to hold her up for a few minutes whilst she recovered and came to. She then didnt know where she was or what was happening to her. She was clearly having a petit mal type seizure, although she was fully drugged up, and fortunately it didnt progress to a full seizure.

She has a strange gait whereby she is bent forward and slightly falls to the right when she is walking. She sort of shuffles, but it is more about trying to keep her balance. I no longer think that it has anything to do with her knee, more to do with what is going on in her brain. The two physios we have seen have also said the same, that it is balance and not the knee problem.

For the first time it really brought it home to me that I cannot take her out without someone else being there, unless I get her a chair. I know she is going to fight it all the way, but really there is no other option. Her comment today when I mentioned it was "oh Sue, surely it hasnt come to that". I know how she feels, but actually it has come to that.

Once again thanks for all your input. I will phone and arrange the appointment tomorrow and just hope they understand why we need one, or at least give us some good advice.

 

[sussexsue]

just got to add that I feel so sad. Being able to get about easily is just another thing this wretched disease has taken from my mum.

Also know that I want this chair so that all the family can get out more, so its mainly for our benefit, as to be honest mum would be more than happy not to go anywhere that required getting out of the car. So my sensible head says - yep thats important, but my emotional head is saying - you are doing this for your own benefit at the expense of my mum's feeling. I know sensible head is right and is what I will do, but as ever, it doesnt stop me feeling guilty.

So excuse the emotions on here, cos I know you can all empathise and handle it. Tomorrow I will be back to my normal practical self.

 

[Izzy]

I know exactly what you mean! Most of the time we use the wheelchair because it means we can all go places. Sometimes mumsays she won't come out of the car, she jsut wants to sit and wait for us. I then get annoyed and insist that she comes out. Maybe I need to think this through a bit more!! Izzy x

 

[Cate]

I do understand when you say its for your benefit, but honestly I do believe the more stimulation the better, a trip out has to be better than sitting around in the same room looking at the 4 walls. If your mum has a tendancy to fall/lean forward, most wheelchairs have a seat belt which should give you some peace of mind that mum wont fall out.

I hope you manage to get a chair, and wish you many happy outings together.

xxxxx

 

[lesmisralbles]

Get the wheelchair

It is a godsend.
Barb XX