Rehabilitation

[Margarita]

I am trying to get a reassessment on my mum ability to walk with the physiotherapist.
My social worker said she would do a referral to the Rehabilitation physiotherapist.

So I phone my local centre to talk to the physiotherapist she was not in so left a message.

I got a letter telling in my mother is not under her, but under the Mental heath Team that had done a Rehabilitation with my mum last year.

Now last year my mind must have been in a cloud of miss, because as I see it now last year no one told me that mum was under the mental heath Team and the mental heath Team have a physiotherapist Rehabilitation section For people with Alzheimer's disease

So from last year to now mum walking has got worse, because of course the AD .so why do Rehabilitation on my mum putting me in denial that mum going to get better.

Rehabilitation what does that mean to you?

Why do Rehabilitation on someone that has AD anyway? Alzheimer's disease, is degenerative i.e. they get worse over time why did not one sit me down from the Mental heath team and tell me this last year if mum was under them.
I did have a dementia nurse who told me imagine a block of flats that has all the light on think of the brain as a block of flat with all the light on one by one the light trun of ,but the building say standing .the building is mum body .

So ok now I understand this more from what I have read on the internet and TP, but it still does not answer my question about Rehabilitation.

I am going to phone the number from the mental heath team .because I need a letter from the person that did my mum first assessment last year. To get mum re-asses, but I seem to be sent from pillar to post. Just wanted to share it before I hit my head against a wall in trying to understand the system when it comes to Alzheimer’s

If it was not for me having the internet............ I would be Clue less about Alzheimer’s

 

[Lila13]

What the NHS offers differs so much from place to place and person to person.

I hope you can get a physiotherapist, and hope the physiotherapist can help your mother to make the most of whatever is left physically.

When my mother came out of hospital last November she could only walk as far as the bathroom and others said she'd never be able to walk further, however we gradually got her walking a bit further, and in April she was going round the garden pulling up weeds, I am glad I took some "movies" of her bending down, gripping small stems, getting back upright with only a stick to help her, and she brought the washing in all by herself, people who'd only seen her in December-January lying in bed hardly able to hold a cup of tea could hardly believe that she had been so much better after that. And it was worth it even if she didn't have long to live.

I think some people when they've been told it's degenerative they just give up hope and don't even try to see what they can do.

We were told my great-aunt would never walk or talk again after her stroke, but with great determination and a lot of help from family she did regain a lot of what she had lost.

Lila

 

[Lonestray]

Hard facts

Hi Margarita, You are lucky to have TP. I had to learn the hard way as I have only recently started on the internet. The reason I came on was to tell how I came to terms with the facts relating to ALz. I discribe the illness like a tree which has been felled. You can see the age of the tree by the rings, the darker inner ones in the centre the lighter and the newer ones to the outer edge. With Alz breaks appear in the outer rings which grow wider with time. From then on the rings slowly fade altogether. The darker rings become a little lighter. My experiences with the mental health and others has been a lack of straight honest speaking. My perception is they have seen it all before, the loss of movement and ability to feed and wash themselves. They don't wish to upset the carers and will often advise putting the suffer in a NH. Before my wife stopped walking, like many people she had a fall and was injured. The force of the fall was taken on one hand which was injured. With a broken arm and dislocated shoulder they failed to pick up on her hand. When I pointed it out three weeks later the three fingers of her right hand had set in a clawed position. The surgeon told me because of her condition it made no sense to operate to straighten them. That was almost five years ago! Once I accepted and embraced this cruel Alz as part of my wife, life calmed down for both of us and like a disabled child you love them all the more. Sorry if this hurts, wish I could be of more help. God bless. Padraig

 

[Kayla]

Mum received physiotherapy in hospital after she broke her hip, and they assessed her the day after she left hospital. They said that she was unable to follow instructions and was not suitable for physiotherapy. Since then she has had no physiotherapy of any kind. Mum is just sitting in a chair all day, and I understand from the Alzheimer's website, that someone with Vascular Dementia is more likely to have a big stroke, than a similar person without it.
Mum has never smoked, only drank the occaisonal glass of wine or sherry, couldn't eat fatty foods because of gall bladder problems and always ate plenty of fresh fruit and vegetables. She also exercised and walked the dog to the limits of her abilities. As far as I can see, the lack of physiotherapy could be putting her at risk of a big stroke. If they were to do an assessment, then perhaps some suitable exercises from the chair could be organised for her.
I've spoken to the NH and they will try to get something set up, but we'll probably have to pay privately for physiotherapy, which doesn't seem fair. It should be considered part of her medical treatment, as way of preventing or reducing the risk of further strokes. I should have thought that any one who was confined to a wheelchair should automatically receive assessments, to see if physiotherapy would be useful to them.
Kayla

 

[Nebiroth]

Is it possible they are confusing different types of rehabilitation?

My Dad is OK physically, although he's a bit infirm at age 81, but we've had a "rehab nurse" visit us for the last six weeks - an hour each week - who has been doing things like talking and building a "Memory Diary" which is a record of Dad's life, with old family photos, history etc.

The original poster sounds like they need a rehabilitation nurse who specialises in physical problems, which a person can suffer whether they have AD or not. In the early stages anyway I would have thought that the physical difficulties were not caused by the AD, but something else eg arthritis?

There are many forms of "rehabilitation" - some covering ways to get on with life, for example someone coming home after leaving hospital being taught how to use a kettle safely perhaps, some addressing a physical problem which can be improved by say special exercises, some addressing mental health.

Isn't it shocking that we sometimes have to go and bang on doors etc to try and get things that people should have as a right. The help is often there but you have to know how to ask for it..

Lastly I think they are reluctant to tell people about what will happen to an AD patient because it is so variable between people - we asked the obvious questions, and we were at least told "I cannot answer that - your Dad will decline gradually but we cannot say how quickly or what might happen in what order as it varies so much from person to person"

 

[Margarita]

When I brought my mother back from Gibraltar in September 04, .she retired out there in 02 after living in England since 1960.

In 04, I had to get mum reg with a doctor then get a referral to the memory clinic in March 05 the dementia nurse came around after that.

Then physiotherapist did an assessment on mum, walking then was told that the Rehabilitation physiotherapist would came around show mum how to do gentle exercise Hold on to the back of the chair he also said that mum musical in her leg can go week. I must say at that time mum walking was not very good sleeping in bed all day not wanting to get up finding walking very hard . I put it down to AD but like Nebiroth siad

The original poster sounds like they need a rehabilitation nurse who specialises in physical problems, which a person can suffer whether they have AD or not .

Yes your right thinking about it now mum diabetes blood pursuer where both very high back then( its happening angina now).

Sleeping all day could have been due to mum diabetic and mum was getting feeling very week when walking , mum got stuck in the bath because of the weakness in her leg angina I put that down to AD

.




mum has arthritis in her knees now was told by a doctor in hosptail wonder last year she was complaining that she had a pain in her leg they put it all down to old age . I put it down to AD

Is arthritis in the knee painful?

I must say that since the Rehabilitation physiotherapist came around last year and told me about the weakness that can happen to the muscle I got mum up and moving by going to daycentre her walking has improve, but her balance is going down hill now she does need something to hold when out side walking on the pavement she thinks she going to fall over .

Kayla I would push to get the physiotherapist to do an assessment on your mum or could you not get your mum a Zimmer frame with the help of the nurse see if your mum can hold herself up with the Zimmer frame even if it’s a few steps and then she has to sit down

They don't wish to upset the carers and will often advise putting the suffer in a NH. Before my wife stopped walking, like many people she had a fall and was injured.

It is unfortunate that people with AD have to have so many falls. before given or get a wheelchair by the physiotherapist department as they say keep my mother mobile as long as I can or the weakness is her legs will get worse . but then she more likely to have a fall anyway as she can not manage the coordination of pushing one of those walking trolley in the street or walk for more then 2 min with out needing a rest it’s a catch 22 .

So I am buying a wheelchair for my mother as I am always been told from someone in government departments that there is people worse of then my mum : as in cannot walk at all.

 

[Nebiroth]

So I am buying a wheelchair for my mother as I am always been told from someone in government departments that there is people worse of then my mum : as in cannot walk at all.

One small thing, if your mother qualifies as "chronically sick or disabled" it might be possible for you to get VAT taken off the price of a wheelchair.

There is more information on the DirectGov website

http://www.direct.gov.uk/DisabledPeople/FinancialSupport/FinancialSupportArticles/fs/en?CONTENT_ID=10028495&chk=uUrKhR

The rules are a bit complicated, so it might be a good idea to call their helpline first. Also, they want forms signing, so don't forget to mention that the person has AD and may not be able to do that.

VAT is 17.5% so it could be substantial on an expensive wheelchair.

 

[Kayla]

Mum does have a zimmer frame in her room, but as far as I know she does not use it. The problem is, that because of her RA, after her hip replacement operation last year she couldn't be helped up from her chair or put any weight on her arms as her joints are so painful. She'd got really stiff being kept waiting for 48 hours for her operation and they should have given her priority over people coming in for more routine operations. Once she'd not been walking for some time, she became too weak and she also lost a lot of weight because she wasn't eating.
Now she should be reassessed because her condition has changed considerably since last year. She is far more alert mentally, has put on weight and is stronger and she is moving herself around on the chair more. If they give her some physiotherapy, it would just be making up for what she didn't receive last year because she was so confused and weak.I don't think it will be possible to get her walking again, but she should be moving her arms and legs around to help the blood circulation.
I do feel that the long wait in hospital and the impersonal nature of the wards has done Mum more harm than anything else. Before her fall she was in an ordinary care home, able to walk with a stick and she was just a bit vague at times. Her hallucinations were kept under control with low doses of drugs.
I still find it hard to believe how quickly she has gone downhill in such a short time. I didn't even know she had vascular dementia until a few months ago when she was in the NH. Things just seem to getting harder all the time, because up until recently we've been really busy sorting out her house for letting and settling her into the NH. Now nearly everything is done there's much more time to think about how bad the situation is for her and I'm finding it all really depressing.

 

[Margarita]

Oh I know that feeling of getting depress ,bloody horrible feeling .when we have to smile to then when inside of us its all so sad . so we should make a club lol think we have TP

Oh well we can't change the past Sounds like you done your best like me just that it’s the system that is F%$”* up (pardon my words )


Thanks for that Link Nebiroth