Making life more comfortable

Brucie

Registered User
Jan 31, 2004
12,413
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near London
Anyone think that it would be good to post details of things that have helped our Alzheimer's patients, and what may help others?

Often it is difficult to know where to look for things.

Example: Safe bed

From the time she had an accident on assessment at the local hospital, Jan couldn't sleep in a bed - she would simply fall or climb out and injure herself. For two years we had her room at the home padded with mattresses, and all furniture moved out. She crawled around all night long and slept only from exhaustion. She continually damaged her head by collision.

We found the supplier of children's playground equipment and came up with a bespoke solution to pad part of her room more permanently. The care standards people wouldn't permit it.

Quite by accident the manager of Jan's home found a bed, made in Germany, that is hugely sturdy and comfortable, with high sides. At first I was alarmed, because it looked like a cage [more like an oversized child's cot, actually] but I grew to see how it might help Jan.

It was ordered and has transformed Jan's life and she sleeps well now. I feel so much better about leaving her each day. The bed cost the best part of £4,500 but the home paid for it.

If anyone ever wants details of such a bed, please let me know.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
That bed

Just thought I would post a picture of the bed that has transformed Jan's sleep, and kept her safe.

At first it can be alarming as it looks a bit like a pen, but it also looks like a cot. The bed surface itself can rise electronically as a whole, or so legs are raised, or so head is raised.
 

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Brucie

Registered User
Jan 31, 2004
12,413
0
near London
And a chair

Jan could not use the standard wheelchair I bought as she would plant her feet on the floor and try and tip it backwards [not on putpose, just muscular activity]

The chair pictured below took ages to find, but Jan was immediately comfortable in it and for the first time in a year I was able to walk, wheeling her around the common lounge area of her care home today. The staff seemed as delighted as I was!
 

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Kerry

Registered User
Jan 25, 2004
6
0
Walton On Thames, Surrey
Items of use

One of the things that we find my mother does now is hide things. We know we can put a key fob finder in her bag - you keep the finder unit, press a button and the lost bag rings! However we need something that can be attached to smaller items - like glasses or watches (these get hidden in socks - under beds etc) . Any one got any bright ideas?
 

Brucie

Registered User
Jan 31, 2004
12,413
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near London
Grief! Didn't I reply to this? Sorry!

The chair: details on
http://www.careflex.co.uk/home/default.asp?a=1
- select Chairs

The one Jan has is the Hydro Tilt one.

We obtained it from Martin Coles at Hampshire Rehab, Tel: 01420 87732.

Two more are on order for fellow residents at Jan's home, so successful has hers been seen to be. Every one who has tried it has become immediately more relaxed, and safer too.

The bed came from Bock.

The web site [www.bock.co.uk] seems to be permanently under construction and unavailable.

Address is

.bock
1 Low St Agnesgate
Phoenix Business Park
Low Mills Road
Ripon
North Yorkshire
HG4 1NS
Tel: 01765 600153

Just to reiterate - the bed and chair have revolutionised Jan's life!
 

rummy

Registered User
Jul 15, 2005
700
0
Oklahoma,USA
A good hint for the AD patient is to get the adhesive backed velcro that comes in little squares or circles. You can put it on the right button for the mircrowave, phone for emergency speed dial, or anything else. All they have do is feel for the right button without having to read it or figure out which one to push.

Debbie
 

Dearth

Registered User
May 27, 2005
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Wigan
www.freewebs.com
Hope I'm not intruding here folks by adding this info... specifically for folk who have relatives who are admitted to a care environment (in my case, I'm referring to a dementia assessment unit).

Please clearly label the person's clothes... a lot of people on the ward get possessions mixed up and mislay them - it avoids many arguments for example by showing a person that the label proves the item belongs to someone else... plus the staff are not clothing experts and don't know who's clothes are whose... so if you see another person wearing your relatives clothing, please mention it to a staff member so that the matter can be resolved quickly.

If you come to visit and see that your relative is wearing the same clothing as yesterday, please don't assume that this is down to neglect... maybe the relative decided that they wanted to wear a particular item and could not be distracted from this, or maybe that item has been washed in the laundry and returned to the person who decided to wear it again... staff don't make people wear the same outfits day in day out, but if a person is adamant that they don't want to wear something else, I for one would not 'make' them as it would be infantalising for them and certainly damaging to any therapeutic relationship you have!

Your relative has not had a bath? Ask why... there might be many issues including mobility problems, anxieties, disorientation, difficulties in comprehension etc. Maybe see if you can persuade them to do so rather than point it out at the end of your visit... that way they could have a bath or shower whilst you are there - it'll only be a 10/15 minute hiatus to your visit.
I'm sure the majority of people would not be party to this, but I've been asked before "Can you not make him have a bath?" I've a big issue about this one... when someone might say such as 'well... he needs one' or 'he'll have to have one'... I argue that I WILL NOT 'force' someone into having a bath... I will pester and pester and explain the need (tactfully) and keep doing so unless told 'NO' - but at that point, no means no and I'm not going to push... because I think that's where bullying replaces care delivery and I would NEVER do that!


One final thing... if you are appreciative of the care your relative is receiving, please share your thanks amongst the people working there... from experience, I can't tell you enough what a lift you get from such supporting comments - it certainly makes a whole lot of difference... but if your experience is not favourable - ensure that you voice your complaints... I tell everyone that and will continue to do so - hopefully by doing that, it means that your relative will be able to get the care and treatment they rightly deserve.


Phew... speech over... me fingers are burning now.

:)

N.
 

jc141265

Registered User
Sep 16, 2005
836
0
49
Australia
Smelly shoes

Ooh hoo! The things I could tell you! (see paragraph in bold below before you take anything I say here to heart)

We label the clothes and still he gets other people's and they get his! We have found a kind of solution to that however anyway recently, my Dad being younger at 60 and now being skinnier fits perfectly into Keith's clothes (my partner), Keith is 43 but a gym instructor and so likes young, hip clothing. Dad is now the only person walking round in the home with any kind of modern fashion sense! :p I guess the carers now remember which clothes are his because the other inmates all much older would look ridiculous in the same clothes and perhaps their families might notice too! <chuckle>

Didn't however stop my Dad from having his pyjama shirt put on back to front the other night, (a button up one). When I asked why the heck that would be done it was because 'well it is very hard to put his shirts on what with his stiff arms'. He's got dozens of t-shirts that stretch, so I'm not buying that one!

Then when I visit my Dad and he has food from lunch all stuck around his mouth at 4 o'clock in the afternoon, dry snot around his nose (not from sneezing or colds just the odd booger that men with big noses and lots of nostril hair have) and eyes full of sleep. Well how tactfully can I complain? I have asked them to please clean around his mouth at least after a meal, and it does improve for a time. But really I shouldn't have to ask, I feed him quite regularly and its not a difficult task. The boogers and sleep in his eyes (god I hate the feeling of having sleep in my eyes, imagine having it there all day!?)

As for asking staff to bullying him into doing things, I'd never do that, yet I see them yank him out of bed, I see them manhandle him into chairs, its something I have to accept because they don't have the time to gentle him into position like I do, they can't be expected to get personal with him like I am and say 'Okay Tom, how about we go sit down for a bit, this way, come on, yeah this way, oh you want to go that way? Okay if you really want to...you finished going that way, well how about we go over to that chair now, yeah thats right, you've got it, now lets turn around, yep thats it, a little bit more, okay now, lets sit down, yes hold onto me if you like, okay we're going down now, are you ready? Thats it, that it, down we go, you can trust me, just hold on to me, I won't drop you, thats it, fantastic, you did that really well!' <wince at fingernail scratches and bruises around waist and back that I got from the being held onto>

When I'm not too busy worrying about all this and focusing my attention on Dad, and then of course there is the whole thing about trying to stay sane and not fall apart in one's own life, of course then, if I manage to find a staff member, though often I give up after walking up and down the hall looking in all the rooms, I will say thank-you and that I appreciate their efforts.

As for complaining, now that is a delicate dance! You don't want to complain to the wrong person and get an accidental result of resentment. You don't want them to see you as the annoying family member that just doesn't understand the pressures of their jobs, the logistics of it all. You don't want to be the one who harps on all the time. Afterall your not there all the time, who knows what they might do if they hate you, your making their thankless job even more difficult and there's your Dad, completely defenseless and unable to tell you what's been done in your absence!

And after all this, guess what? I don't think the home my Dad is in is a bad one, and the staff in it too are all acceptably good in my eyes. They are just humans dealing with a difficult job, short-staff and a whole heap of people with a terrible disease. I'm not having a go at you dear Dearth, but if others on here are like me, all they ever think about is caring for their loved one and with that comes thinking about how to deal with their loved ones carers, why their carers behave in certain ways, how they can get better caring for their loved ones from these carers, how they can word their concerns without saying the wrong thing. Sometimes it seems like I never stop thinking, am always putting myself in the other person's shoes, trying to be understanding, in fact I think I've forgotten what my own shoes look like!!

It is all very good advice and I will take it on board, but will somebody tell me where my shoes are???? I don't think anyone else seems to have time to put my shoes on for long enough to really understand what its truly like for me. Then again I probably can't blame them for not really wanting to try them on for too long they really stink! Alzheimer's does that to carers shoes you know!

Last but not least after my rant, please, please,please don't be offended by it Dearth, I am very impressed with the amount you care, and your energy in trying to be even better. You are wonderful, a breath of fresh air.

This rant was not directed at you or your post it was just a cry of frustration, that I can do all those things you suggest but, my shoes still stink!

Thank-you too all of the posters on talking point who also have shown me that they know what it is like to have smelly shoes. ;)
 

Dearth

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May 27, 2005
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jc141265 said:
Last but not least after my rant, please, please,please don't be offended by it Dearth, I am very impressed with the amount you care, and your energy in trying to be even better. You are wonderful, a breath of fresh air.

I am not offended in the least - many thanks for sharing an honest opinion with me.

I can say that I know a lot of people personally who'd read my post and say "what a bunch of cr*p! Try living in the real world Dearth!" - and I do try... certainly time constraints affect how a person is treated... but I reckon there are ways of doing this that can still show value for a person...

Example: If someone is very slow in mobilising and you've goit minutes to get them from A to B - then this is what I would do:

Explain that you're in a hurry and say "Do you mind if we use a wheelchair? I KNOW you can walk, but it would make it easier for me too, because I've other things to do... do you mind if we do that?"

I feel this is better than the 'come on - hurry up' routine, because it shows respect for the other person... you're being honest too, in explaining that the reason is to make things easier for yourself for whatever reason.

I have to say though, the 'manhandling' that you mention - that is something I certainly don't agree with... but it's easy for me to say, I'm not the one who has to complain and then worry about the consequences, but I certainly avoid anything like that.

In the past I've been smacked, cracked, battered, spat on and sworn at... but I think that if you care enough in the job, you grow a very thick skin... I don't personalise it... and I tell myself that it's just something I have to get use to.

I don't hold grudges... maybe agains t the dementing illness, but certainly not against the person who it is affecting - I realise that it must be frustrating, confusing and frightening and therefore any kind of 'disruptive', 'innapropriate' or 'aggressive' behaviour is a result of these things.

It takes a lot to go back to someone who's REALLY cracked you one earlier in the day... but I've done it, and I could do it again and again - I think that's why I can do the job... not trying to sound corny here, but I reckon it's because I care enough.

I'll leave it at that for now - hope my reply makes sense.

N.

P.S. As to clothing... now that's one of the mysteries of the Dementia Universe... they'll always get mixed up and go missing... as to teeth and glasses though... I'm not even going to START on that one! :D
 

jc141265

Registered User
Sep 16, 2005
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49
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In the real world again

Explain that you're in a hurry and say "Do you mind if we use a wheelchair? I KNOW you can walk, but it would make it easier for me too, because I've other things to do... do you mind if we do that?"

Unfortunately Dad doesn't respond to explaining either unless you have the patience of a .....daughter? And I mean patience! It can take a good ten minutes to get that meaning across. Thus the manhandling these days.

A good strategy though with those who still are okay at interacting verbally.
 

Dearth

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May 27, 2005
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jc141265 said:
It can take a good ten minutes to get that meaning across. Thus the manhandling these days.

I see where you're coming from... a pity but a sad fact of life that time affects how care is delivered - just an observation.

If I could live in 'fantasy land' I'd love for everyone in care to receive 1-2-1 care at all times and for there to be no constraints as to how long things take...

But of course, when the 'daydream' bubble bursts, the reality is of course not the same.


It's frustrating to WANT to help and to make a difference too, especially if you can't for whatever reason.

Still, I'll keep trying my best... that's all anyone can do I reckon.

Hope this makes sense!

:)

N.
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
I was also thinking that information on assistive technology could make someone life more comfortable while livening at home independently in their own home for as long as possible , especially having things installed for cookers / gas leaks in their home in the early stages would be an advantage http://www.atdementia.org.uk/productSearch.asp?page_id=16



Always ask a social worker or your local royal prince’s carer trust, if they have any funding so your love one could get help with the cost of assistive technology under there independent living fund
 
Last edited:

karis532003

Registered User
Sep 28, 2008
3
0
London
My mother's in a home which has the best of intentions. They speak the speak of person-centred care but unfortunately the reality isn't always there. When a carer has gone to grab Mum's glasses from her face when trying to get her undressed and gets walloped for her troubles, I try to show by example by saying 'I need to take your glasses off so that we can get you undressed. I'll do it very gently so it won't hurt you', then very gently take them off. I must have done this hundreds of times but the message hasn't got through to those carers who don't think about how it must feel to have someone just grab at you. These are the same carers who just yank an arm out of a tee-shirt, blouse etc., then get screeched at. A simple 'I'm going to take your top off now, do you think you could help me' does wonders. On the other hand there are carers who are so gentle and patient and kind that I could kiss them. I have got into the habit of thanking these carers profusely in front of the others saying how kind, patient and gentle they've been hoping the others will get the message, but no luck up to now. I live in hope!!!!!!!!!!
 

rummy

Registered User
Jul 15, 2005
700
0
Oklahoma,USA
Hi Karis,
I am happy with most of my Mom's care but there is always a CNA that won't do a good job, it is a constant struggle. I have to call this morning and complain because they aren't putting bids on the residents at meal time and yesterday Mom was covered with her breakfast and just left that way. Other issue I have to call on is to hospice who does her bathing. They are doing a poor job of late.
One thing that does help is to keep premoistened disposable wipes next to her bed. The workers are more inclined to was her face since they don't have to fetch a wash clothe and wet it. It is also very easy for me when I see they have not cleaned her face. I usually get the Oil of Olay wipes because they contain a good face moisturizer but I imagine baby wipes would work well also.
Brucie, I am going to look into that chair!
Debbie
 

jeanmr

Registered User
Nov 21, 2008
4
0
Bed

Could you please let me have the details of this bed? We have bought a medical bed for an aunt but it is not attractive. It is an adjustable bed, with removable high sides.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
I will ask the home on my next visit as I can't find the supplier details immediately [original post was some years ago now but the bed is still in constant use - I was showing it to someone today.]
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Sorry for the delay.

Here are the details - while this is about a certain supplier and a certain product, there will undoubtedly be other suppliers and products of a similar nature.

We brought the bed from .bock contact details were:

.bock
1 Low St Agnesgate
Phoenix Business Park
Low Mills Road
Ripon
North Yorkshire
HG4 1NS

www.bock.co.uk

The above web address seems to redirect to http://www.carebase.net/ and it may be that Jan's bed is no longer available in its exact form.

Anyway, some information is better than none. Good luck.
 

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