Excersize in the latter stages of dementia

[merlin]

Hi

My wife has been in a CH and in the latter stages of dementia (by definition) for about 7 years. She is not mobile nor able to communicate but by having a hands on approach and seeing her for about 4hrs a day I have kept her on her feet and managed to keep her walking after a fashion. As a result this has stopped her from being consigned to bed and slowly losing the use of her legs with the muscles atrophying.

During this period, the benefits were tangible in the form of better sleep, appetite, no bowel problems and easier transfers. However, H & S legislation, stories of falls and bad press about CH's have made the CH manager and carers,who up to recently were reaping the benefits of my hard work, sit up and take notice. Without the courtesy of a consultation the CH has banned me from lifting her up and either sitting her in a wheelchair or walking her even for a few steps. And told all staff to only use a lifting frame. So now the inevitable will happen The CH will leave her in bed or a recliner for longer periods with less attendance and dare I say it 'less cost'.

My question is whether anybody out there has any experience of any form of physiotherapy, or exercises that might help to keep the leg/calf muscles from withering away. I have spoken to a physio and she is still on the case but is also constrained by safety legislation and even though some transfers may need 2 persons I cannot be one of them because I have had no 'training'. Despite I may add, having been the sole carer for about 3/4 years.

Being a bit of a keep fit nut and seeing someone's (especially my wife) completely bedridden is hard to take. I've even thought of looking for a new CH more sympathetic to my ideas, so any suggestions would be gratefully received.

Merlin

 

[Rageddy Anne]

ELFANSAFETY does seem to be madness in a rational world. Sorry, I can offer no suggestions, but just want to say sorry your efforts are being hindered in such a silly way.

 

[stanleypj]

Hi Merlin,

I just wanted to say that I feel for you. It must be very galling when, as you say, your hard work has been beneficial for your wife and also for the CH staff. Looking for a CH that would be more sympathetic sounds like a very good idea to me - I just hope they don't all sing from the same hymn sheet.

My wife has been pretty stable for a couple of years following a three month period when I seriously doubted that she'd get out of the house again. I'm sure that one important factor in her improvement is that we gradually worked up to walking at least 5 miles a week. It's well-known that walking has all kinds of health benefits. I know that physical problems sometimes make walking hard if not impossible but I do wonder at times whether some care homes find their job apparently easier if residents aren't moving about too much. I'm even happy when my wife walks up and down our hallway talking to imaginary freinds as at least she's getting more exercise. Like you, we've found that improved sleep, appetite and bowel function have clearly been helped by exercise.

I hope you will get replies from members who have found care homes that understand this important issue.

Take care

 

[merlin]

Hi Stanleypj

Glad to hear from a like mind, but of course with all the hype about neglect in CH's the word 'fall' has taken on a new meaning. I take precautions obviously and I line up chairs at rt. angles to her walking and if she feels wobbly I can easily swing her around and sit her down.

In reality on the rare occasions it happens (3/4 times in about 5yrs) and she misses the chair, it is more like a slow gentle swoon to the floor. I am already taking her weight so no real damage or bruising tales place but because I need help to get her up again, it is nowadays reported as a fall and I get a black mark.

A bit of a dampener on iniative but I shall persevere (illegally if necessary) until her balance makes it impossible. Interestingly, I have discovered that with this regime it is the balance signal from the brain that goes rather than the leg power.

Merlin

 

[Padraig]

I don't post much any more as there is little point. However your post Merlin sums up all too well what I witnessed in the whole approach to care in the system.

By the time I placed my wife in a NH she was wheelchair bound, no speech and had lost the use of her limbs. Spending 8-9 hours a day at the 'Home' I witnessed what I viewed as short comings. When patiences fell in the corridor I would attempt to assist them, but was told off; I had not been 'trained'.

Training has a initial place in the system, but what's missing is the learning process that should continue through out a carers career. Time and again I was requested to leave the room while staff changed my wife's pads. There came a stage where I was no longer prepared to be told what I could and could not do, so I refused to leave and questioned why? "For your wife's dignity?" With that I blew my top: "Who do you think has been changing her pads for the past three years?" With that they left the room and returned shortly to perform the task in silence with me present.

What I witnessed shocked me. They held my wife by her upper arms, and as they lowered her pants, her left foot rested on her toes. The skin hung loose on her ribs: there was no longer buttocks, just limp hanging flesh. the left buttock had a black leathery looking texture. The right one was raw blue with a red hue. Upset I left to seek an explanation from the duty nurse. The young mail nurse explained it away, as part of the disease's progression. The reason she could not weight bare on her left foot was due to a deep pressure sore on her heel.

To this day I thank God I decided to take her home and to hell with everyone, I would look after her in my way. Though all the experts convinced me she was dying, I was intent, with that being the case I would be there all the way. As it happened I was for another four years and eight months. Even though I proved so many people wrong, why would I bother trying to sweep back the tide of accepted procedures?
I'll just keep on writing my story until it's finished, then let the chips fall where they will.

 

[stanleypj]

Hi Padraig,

I was really hoping you would contribute to this thread as I feel you have so much to offer peope like merlin who are understandably questioning practices and procedures which seem to them unhelpful to the people who the staff are supposed to be caring for.

Please don't think there is little point in you posting. Even if you were saying the same thing every time - which you're not - new people who need to hear of your experiences are coming along all the time.

Thank you so much for being, strange as it might seem to you, a beacon of hope.

 

[Sue J]

When nursing we were taught by the physios what exercises to do with stroke patients or others unable to exercise. If sitting we would gently support the patient's legs behind the knee and flex it forwards as much as they were able to. Also gently rubbing of the calves to aid and increase circulation. Also with the feet, supporting the ankle and flexing the foot up and down or in a gentle circular movement. Essentially manually doing the exercises that you would do yourself if lying on a bed but being sure not to push beyond what the person is capable of. A bit of talcum powder in your palm and rubbed over the heel of the foot is soothing and aids circulation. No doubt some may now criticize this with 'evidence based practice' my evidence was that it reduced sores.

I struggle with expression and can't express what I feel about the madness that purports to H&S in our care homes and just sorry you and your wife are in this position, they should welcome and encourage your input of love & care and work with you to ease your wife's suffering. Well done on what you have so far achieved, I would look for another home as you say.
Best wishes to you both
Sue

 

[Padraig]

Stanley,
Below is an extract from my story as to how I set about tackling just one of the many physical underlying causes of avoidable illnesses, that were ignored in the late stages. One advantage I had, was that as an ex International athletic (self coached) I understand the importance of flexibility and mobility.

Sue, as you can see it's not unlike your suggestion.


"For her rigidity, an hour each day was set aside to exercise her limbs. The exercises began with her feet, with gentle flexion, extension and the rotary movements of the joints. These were conducted using ten repetitive movements for each joint. Over time, the exercises were increased to twenty repetitions. As I worked up the body the same procedure was applied to the hinge, plus the ball and socket joints of the hips, legs, arms and shoulder joints, using flexion, extension and rotary actions as applicable."


Pictures I've already posted on the site show the improvement that was achieved.

 

[Witzend]

My mother's CH has chair-based exercise sessions for those who are able to participate.

 

[stanleypj]

Stanley,
Below is an extract from my story as to how I set about tackling just one of the many physical underlying causes of avoidable illnesses, that were ignored in the late stages. One advantage I had, was that as an ex International athletic (self coached) I understand the importance of flexibility and mobility.

Sue, as you can see it's not unlike your suggestion.


"For her rigidity, an hour each day was set aside to exercise her limbs. The exercises began with her feet, with gentle flexion, extension and the rotary movements of the joints. These were conducted using ten repetitive movements for each joint. Over time, the exercises were increased to twenty repetitions. As I worked up the body the same procedure was applied to the hinge, plus the ball and socket joints of the hips, legs, arms and shoulder joints, using flexion, extension and rotary actions as applicable."


Pictures I've already posted on the site show the improvement that was achieved.

It's just this kind of thing that is invaluable Padraig. You were working on a form of rehabilitation, it seems to me (though clearly, with these conditions, there will always be a limit to what can be achieved). So often, this very notion is dismissed as almost laughable yet I remember your pictures - they were striking. I'll try to find them and post a link.

 

[stanleypj]

Here's the link to a thread where Padraig posted some pictures which show something of what he achieved:

http://forum.alzheimers.org.uk/showthread.php?59179-Book-with-pictures

 

[Padraig]

Stanley,
That is so kind of you. I can only hope they can give hope to some people. I've just looked up those posts and note that I mentioned I'd finished my story. Unfortunately I've had to rewrite much of it and it is proving a lot harder to commit to paper an interesting and readable story. There are days I'm in so much pain that I can't concentrate but still write. I'm hoping to finish rewriting the final 20 or so pages by the end of next week.
I'm still pushing boundaries by running at five o'clock in the morning. It's mind over matter and anyway I want to be fit when I die. There's a plaque on my wall with an Irish prayer: "May I be in haven a half hour before the devil knows I'm dead."
You take care and best wishes to you all.

 

[Sue J]

Bless you Padraig, keep pushing those boundaries.
xxx

 

[stanleypj]

You're an inspiration Padraig.

 

[merlin]

Hi All

Sorry there was a gap in any response to this thread but I thought I was only going to get a limited response - how wrong I was and thank you all so much.

I'm having a meeting with the CH matron and the NHS physio's next week and the extraordinary thing about it is they all predict the same thing ie. muscle atrophy and loss of mobility without excising but they seem so risk averse publicity I suppose).Tere is a sudden stop of ANY lifting except by the lifting frame and there seems no method of getting round the problem. I shall persevere I don't give up easily and if necessary as a last resort do a 'PADRIAC'

I have to qualify my statements by saying the CH and all staff up to now,have been over the years,very supportive of what I have been doing possibly for their own benefit but nevertheless I've made some firm friends among them. They are complaining as much as me and staff opinion is much divided. This appears to be a decision perhaps forced on the CH by these tonnes of new legislation and 'punishment by media' having an effect which was not predicted.

Thank you all for the exercises, I'll give them a try as well as illegally walking her a little bit at shift change when no one is about, which I might add, she is still. quite capable of. I do find this situation an insult to my own intelligence as she is my wife and would hardly expose her to any danger!

Merlin

 

[stanleypj]

You keep up the good work merlin.

There was an item on Newsnight about the fact that rehabilitation for people with brain damage is often poor or non-existent even in units that have 'rehabilitation' in there name. No surprise then that the current fatalistic approach to dementia and its progression usually dismisses any attempt at physical improvements when even people with brain damage who, it is accepted, can sometimes be improved by physical activities are often neglected.

 

[merlin]

Hi Stanleypj

Newsnight was dead right about the term rehabilitation in front of anything about mental health because I take my (our) dog as a PAT dog to a phsysatric rehab unit and asked the same question 'do these poor guys get to be rehabilitated into normal living' and the carer there said pretty emphatically 'no'.

Thanks for your encouragement I'll keep you all posted

Merlin

You keep up the good work merlin.

There was an item on Newsnight about the fact that rehabilitation for people with brain damage is often poor or non-existent even in units that have 'rehabilitation' in there name. No surprise then that the current fatalistic approach to dementia and its progression usually dismisses any attempt at physical improvements when even people with brain damage who, it is accepted, can sometimes be improved by physical activities are often neglected.