Carers Direct

Equipment on Loan

Hazel2 — Sat, 30 Jan 2010 10:54:00 GMT

Recently a District Nurse came to update our inventory of equipment loaned to The Great Survivor to help him cope with daily life. No wonder the NHS has financial difficulties:

Bed lever (for helping get in and out of bed)
Propad mattress cover (for fragile skin)
Propad cushions - one for recliner chair, one for wheelchair
Walking Sticks
Walking frame (lightweight for indoors)
Walking frame with wheel, seat and brakes (for longer trips)
Transit wheelchair with power pack attached (so that I can push it) for even longer trips
Perch stool in bathroom
Commode (when he is unable to reach bathroom)
Loo frame (to help with sitting down and getting up again)
Foam boot to protect foot in bed from pressure sores (not much success with this)
Splint for his right hand (which is curled tight shut - someone's contracture)
Knee supports to help keep his old knees from buckling
Little table on castors for chair or bedside

Plus we are waiting for some gadget to help him stay safely in bed at night.

What other country could provide all this on trust at no cost? (And this on top of his huge monthly delivery of meds and disposable equipment).

We count our blessings.

Hazel

'The Old Bleeder'

Hazel2 — Thu, 28 Jan 2010 11:26:00 GMT

Sometimes I call the Great Survivor "The Old Bleeder" instead. Here's why: this morning I noticed spots of blood on my duvet cover, the side nearest to HIM. Upon investigation, I found a spot on the bedsheet and then examined him for wounds - this might be a spot on his face, a scratch on the thin skin of his forearms, some little wound. Sure enough, the sleeve of his nightshirt was quite bloody with dried blood. At some point in the night he had had a bleed. When he was showering I found the cause: a spot on the thin pale skin of his upper arm. He has these innocent looking spots all over, and at any time they might decide to bleed a little (especially as he has to take aspirin for his heart, and as he likes to scratch an itch!).

Occasionally the bleeding is more extensive and therefore - to me - alarming. (He doesn't bother). There was the morning when he called from the bathroom (where he was having a quiet wee) to say that he was bleeding. I imagined blood in the urine (we've had plenty of experience of that too). But when I went to look there was a trail of blood leading back to the bedroom up to the bed itself. With trepidation I pulled back the duvet. It looked as if someone had been murdered in the bed! (Nurses will tell you that a little blood can make quite a show!). The cause: one toenail had scratched the heel of his other foot and he had been quietly bleeding through the night.

These episodes usually occur when I have just made the bed with freshly laundered sheets!

Why is his skin so fragile? Age and diabetes I guess!

At least we can expect help to cope with the restless legs: a technician from the Social Services is coming to see what might be rigged up to keep The Old Bleeder in the bed, rather than walking out of it each night.

Hazel.

Connections between carers and cared for

Sam_S — Wed, 27 Jan 2010 14:11:00 GMT

I've been really touched in the last couple of days by the postings of Norrms on our site for adult carers, www.carers.org. Norrms is living with Alzheimers Disease and has been sharing with us his moving insights into the early days of Alzheimers, both before and after diagnosis. http://www.carers.org/messageboard/2/15716/thread.html

What has been really interesting is seeing how, despite our website being aimed solely at carers, rather than those with the illness / disability, the carers who use it have welcomed the very personal account of one person's experience with Alzheimers. It makes me think of the gap that can exist between having the illness and caring for someone with the illness. How hard it must be for any relationship to cope with the diagnosis and share, really share, what it means to both parties. Norrms has given all of us on carers.org a unique view into, as he calls it, "the fog", of Alzheimers and I can only imagine how helpful this may be to people who are themselves coming to terms with the diagnosis of a loved one.

The critical timing of meds

Hazel2 — Mon, 25 Jan 2010 16:29:00 GMT

My beloved, the Great Survivor, decided he would delegate his care to me. He just concentrates on being positive and taking each day as it comes. This is an essential part of his survival strategy. Sometimes it causes tension between us: Parkinsons medication works best if given at regular intervals (I'm talking about Co-beneldopa). Moreover, he has to take the last dose no later than 6pm, or he suffers awful night terrors. Working backwards from 6pm, this means he should be taking the morning dose, with food ideally, around 8am.

Whether it is Parkinsons or merely his age (90), he is increasingly sleepy in the mornings and not motivated to get up. I got really aggravated recently - and told him he was making it difficult for me to care for him.

He says he'll fit in with whatever I want to arrange. 'It's not what I want', I tell him, 'it's what's best for you'. He gets all upset.

We're trying a new routine now. Morning cup of tea around 7am followed by shower and dressing at 7.30 (the caring procedures take us over 1/2 hour) so then he's ready for breakfast around 8.10am. And he takes his first dose. Then he lies back in his recliner and nods off while listening to Radio 4 (for most of the rest of the morning!)

It is helpful for me to put this down in writing. I can see already, from the few entries I have made, that - despite his multiple health problems - it is Parkinsons that is the most challenging as far as care is concerned.

Hazel.

The Miracle of Convenes

Hazel2 — Sat, 23 Jan 2010 11:50:00 GMT

Can anything good come of falling a breaking a hip when you are 89? In the interests of balancing negative with positive, the answer to this is YES. We discovered convenes! The Great Survivor (TGS) had to cope with nocturia (lots of urination in the night) - possible due to Parkinsons, or prostate. Up to four or fives times per night he would struggle to the bathroom for a wee. After his fall - which just happened one day for no reason - he could no longer get up to go to the loo, and once he started to get his mobility back, it seemed a dangerous thing for him to attempt.

At first I was trying to help him use a urine bottle, but this was really tricky, and as TGS was anxious not to wet the bed, he would ask for the bottle up to 6 or more times in the night. We were going spare. Then a nurse or care worker mentioned convenes: continence sheaths which attach gently to the penis and have an outlet pipe which fits onto a urine bag placed beside the bed. He fills his urine bags to the brim every night and we can both sleep peacefully the meanwhile. Of course, he is now dependent on it. His bladder control in the night would no longer be assured.

Yes, there have been accidents, but they are a small price to pay for the luxury of being able to sleep undisturbed.

Hooray for convenes, we say, and thanks to the NHS!

Hazel

Restless Legs

Hazel2 — Fri, 22 Jan 2010 16:43:00 GMT

As usual, last night was a disturbed night! The Great Survivor (TGS) is an active dreamer and has restless legs particularly. Active dreaming goes with Parkinsons apparently. He is deeply asleep but he swivels sideways and his legs fall off the side the bed risking injury and a possible fall to the floor. I wake up in a panic and manhandle his legs back into bed. Recently I have been piling pillows to the side of his legs on the edge of the bed which helped. But last night he kicked them to the floor twice! I think he was playing football. He often does in his dreams.

Fortunately we are expecting a visit from an occupational therapist who will consider options for gadgets (maybe like bedside rails) that will keep the TGS in his place. We do have some laughs along with the gritting of teeth!

Enough for today!

Hazel

Starting a carer's blog

Hazel2 — Thu, 21 Jan 2010 16:29:00 GMT

Hello there.

This is new territory for me. Here goes: I care for my 90 year old husband who has such list of diagnoses that makes one wonder how he survives: heart failure (treated with a pacemaker and a pig valve in his heart); Parkinsons Disease; Benign Prostate Hypertrophy (treated with female-type hormones); Diabetes Type 2 (diet controlled: Arthritis (no chance of new knees for him); all compounded with eyesight and hearing difficulties. He is the most positive person I know. We'll call him The Great Survivor (TGS).

Having nearly been killed in WWII, he reckons each day is a bonus and this is what helped him through his most recent challenge: an op. to repair a broken hip, followed by several weeks treatment for MRSA.

I am considerably younger - though don't always feel so! When we first got together, about 15 years ago, he was a sprightly seventy-something and used to do all the cooking and shopping in our house while I went out to work and kept an eye on my parents. So now he is cashing in his chips.

Each day seems to bring new lessons and adventures. But this is probably enough to start with.

Autism Act 2009

Deborah Packenham — Thu, 22 Oct 2009 13:36:00 GMT

I'm really excited today as I have just heard that The Autism Bill has made it through its final parliamentary stage and will now become the Autism Act. The Act is the first ever disability-specific law in England.

The Autism Act will guarantee the introduction of the first ever adult autism strategy, which will set out how local services should be improved to meet the needs of adults with autism.

The strategy will cover a range of issues including health, social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation on local authorities and NHS bodies to meet certain requirements.

The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

Don't Write Me Off

Deborah Packenham — Thu, 15 Oct 2009 13:24:00 GMT

The National Autistic Society has launched a new campaign Don't Write Me Off http://www.dontwritemeoff.org.uk/.

It has left me wondering about when the time comes for my own son to start looking for employment and what support may be available to enable him to achieve this. Sadly, I hear all too often from people with autism/asperger syndrome how desperate they are to find work and want contribute to society but don't know where to start. I do hope the campaign helps raise awareness and understanding in this area and that some major improvements are made as soon as possible.

Video: Long-distance carers

Caspar — Wed, 07 Oct 2009 13:56:00 GMT

Gillian talks about being a long-distance carer for her mum, engaging with social workers and support services, and the importance of being organised

(Please visit the site to view this media)

Consultation For The Adult Autism Strategy - Last Chance to Take Part

Deborah Packenham — Fri, 11 Sep 2009 14:08:00 GMT

The Government is developing the adult autism strategy for England after the NAS I Exisit campaign found at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help.

The Closing date for the consultation is Tuesday 15th September and the strategy will be delivered at the end of the year. It aims to address the barriers which leave people with the condition feeling isolated, ignored and unable to get the help they so desparately need in five key areas: social inclusion, health, employment, training and choice and control information. Please take the time to visit www.autism.org.uk/dhstrategy. We all know one of the hardest things for carers is the dearth of support for those that they care for - 40% of adults with autism live at home with their parents and it's of great concern to parent/carers what will happen when they're no longer around to care for them. The strategy could make a huge difference to the lives of adults with autism and their carers...

Simplifying benefits claims

wendy1 — Fri, 11 Sep 2009 13:58:00 GMT

Why aren't claimants informed of benefits they might be entitled to. Sometimes being entitled to one benefit means you could possibly be entitled to another, say DLA and AA or DLA and Carers. Why do they not inform people of extra benefits available to them. Also a friend of mine has Parkinsons and because he didn't know the system (he had a good career before Parkinsons) it took him two years to get things sorted. I think health care workers should be aware of what benefits are available and let patients know to save all the hassle my friend had to go through.

A carers package delivered to a carer when they become one and the same for any claimant for any benefit? This could be done with cooperation from Doctors, societies for the various disabilities, and charities?

In other words, delivered at the sharp end when a need is identified!

Back to school

Sam_S — Wed, 09 Sep 2009 09:41:00 GMT

It's that time of year again and as someone who cried at their child's first day at school yesterday I can understand the apprehension that this time of year can bring!

On www.youngcarers.net our young people are heading back to school - for some of them it's a relief to get away from the pressures of home and to be able to see their friends, return to a routine and forget about their responsibilities for a while. For others it's less easy - they may be returning to an environment that doesn't support or understand their caring role, or may not even know about it! There is much that schools can do to make things easier for young carers by asking the right questions, in the right way and at the right time and then following up whatever support needs are identified. Our young carers tell us that having an understanding teacher and some leeway when things get hard at home really can make a huge difference to them.

And on www.carers.org we see the other side of the coin - the parents of children and young people who have disabilities and who may be helping those children adjust to new routines or new schools. It's never easy but particularly for parents of children for whom routine and familiarity is important this can be a very stressful time and a good school escort or member of support staff can ease this process for everyone concerned.

So, I'm hoping that whether you're a young carer or a parent carer that this week or two goes well for you!

Sam

Summer Holidays Over

Deborah Packenham — Tue, 08 Sep 2009 10:23:00 GMT

Most of us I know will be breathing sigh of relief that the long holidays have now come to a close. It seems like it lasted forever for me this year as my children had nine weeks off. I'm sitting here this morning having a nail biting time as my youngest son who is diagnosed with ASD started at our local mainstream secondary school and all sorts of things are going through my mind, will the support be in place and will he be happy - we will soon know if it went well or not by his behaviour when he gets home. It's been an exhausting nine weeks trying to find things to occupy him with but we were extremley lucky to be offered a weeks family holiday from the local Carers Centre after being on the waiting list for five years. This provided a little bit of respite as there were lots of activities laid on together with a number of care workers to take them off our hands for a bit. Play schemes for young people with ASD are very few and far between often with long waiting lists. Its been very hard to get my son off the X Box and motivated to get dressed and come out with us over this Summer and it's really a bit of respite to have him go back to school - at least until October when holidays and stress begin over again.

Where is the respite care for carers?

Sam_S — Mon, 10 Aug 2009 13:40:00 GMT

Recent research by The Princess Royal Trust for Carers, CarersUK and Crossroads Care is showing that a shocking 35 Primary Care Trusts are not currently spending any of the monies allocated to them by the government for breaks for carers on that purpose http://www.carers.org/news/trust-calls-for-primary-care-trusts-to-fund-respite-breaks,4930,NW.html

It got me thinking about just how vital this service is and how many carers must be missing out on the breaks they so often need. How many carers are struggling along day after day without a break in order to get rest and a few days break? Most of us take our holidays for granted, even if all we do is stay at home and catch up on jobs - to be undertaking the same caring tasks, day in day out, with no break for months on end is not what carers need or deserve.

Let's hope this campaign to get PCT's to spend their money on respite for carers has an impact!