another bump

Firstly i'd like to appologise for this long winded contribution but please read it, there is two messages here.

Prior to my current job i worked for Social Services , supporting adults with learning diisabillities [ a P.C. term i loathe, as it puts all mind disabled individuals into one pot]

When i started, i was one of 6 staff, selected to open a new communitty house, with 4 residents.[ This was part of the UK's care in the community programme, which meant taking individuals out of large hospitals/asylums, and placing them in shared homes but as tenants and Thus part of the community] This in its self was a traumatic time for these individuals, they were taken from establishments that had cared for them for years, [ yes and sadly in the pat abused, mistreated, and ignored most of the time, but that was the past] the future was to reintergrate these adults into their birth communities and participate in community life.

The only problem with CARE IN THE COMMUNITY as a political/social concept was/is that the community as a whole dont CARE.

I digress


Going back to my first role....The house had four tenants ...Julie L..28 Celrabal Palsy.[ verbal skills/ and highly emotional] Julie H...25... Celrablal Palsay..[non verbal communication skills/ lovely squeaks and squeals that said more than words]
Jenny..44 Autism..[non verbal communication but a laugh to scare the pants off you] and finaly dear Kathleen 40. .Down syndrome.. [full communication skills, dry sense of humour and a heart big enough to choke a horse]

This story is about Kathleen.. Her mother was 82 years old, unlike the other ladies Kathleen lived at home with mum, and had done all her life. Social Services in their infinate wisdom decided that Kathleens mum needed a break and that Kathleen should be more independent and live away from home. They cohersed/cajoled this loveable lady into a romance of sharing a home with three other ladies, have round the clock support, go out and do what you want...shop..socialise..have fun ..etc... what thay did not tell her WAS MUM WAS NOT GOING WITH HER..

Externaly Social Services sold the idea to Kathleens mum ...as the right thing to do/your old you need space/rest Kathleen will be fine....and .she loves this idea....

The day kathleen left home to move into her knew home life changed.

Kathleen was Diabetic, and had insulin injections twice a day. She was given these injections previously by her mum. Kathleen knew the inbetween parts of her illness and was awre of eating regularly, and snacking at certain times.. to balance her sugar levels..


A district nurse had been enrolled to come to the house twice a day to administer the insulin.. but after one week [money raised its ugly head]
Talk between the nurse and Social service care co-ordinaters.. soon established this could be a long and expensive exercise...answer=

Teach Kathleen to inject herself....so week two started with a demonstration to kathleen on an orange how to inject insulin.

After two demonstrations Kathleens demenor changed, she was horrified of this independence being thrust on her and wanted her mum.

Sadly mum, was also suffering ...afterall her child had been removed from the family home and instead of feeling relieved with her own new independence was destroyed with guilt and saddness of Kathleens departure..

And under instructions by social workers declined Kathleens requests for home visits, or to visit her at her new home.[ apparently by avioding contact for 6-8 weeks helps an individual adjust to their new surroundings, without the reminders of home comforts.....]


Week three...after three days of declined invitations for home visits by mum... Kathleen started not to eat....[serious problem]

The nurse was being overly persistant that Kathleen partook in injected the orange twice a day to train her in self administration..and this poor womans stress took a hold of her....

Week thrre day six... Kathleen returns home unwell from her day centre..Her lips are covered in salt crystals...and she looks very pale. Kathleen is also talking in a manner that suggests confussion...a doctor is called out...

A virus is diagnosed... fluids and rest diagnosed....

Week 4 [1 day later] I arrive at work at 7am...Kathleen is running a tempreture and has alll night refused fluids.. i sppon feed her water for 2 hours.. whilst sponging her forehead down.. Kathleen becomes adgitated and restless... and very confused... i call an ambulance..........it arrives and because Kathleen although Down Syndrome with a raging fever and total cofusion... has the words to say ...'go away, i'm not going to hospital'

The ambulance refuse to take her[[ Political Correctness as its worst, as they believed she made an informed choice they could not take her against her will]

I and another collegue struggled for a further five hours to give her fluids and reduce her tempreture. At 7pm we called a doctor out who imediately called an ambulance....AND WAS TAKEN TO HOSPITAL


Kathleen died three days later of diabetic kidney failure... and although we had beeen informed on the night of her hospital addmitance that she was being reffered to another hospital for di-alasis.......This never transpired ... the reason given was .... she was not the right candidate for di-alasis or transplant....


Who decided Kathleens life................

David[please forgive all spelling mistakes]

I stayed a further 2 years in the home, after Kathleens death then took up a new post.
Re-settling three individuals into the community from a long stay Hospital/asylum [the last to close down... originaly housed 2500 individuals]

Matrin...42...Autistic.[non verbal communication, but most independent person with the strongest will, ive ever met]
Bernard 66 [Blind, Autistic..and of poor physical mobility [ no verbal communication, but a character what films should be written about]
and finally Iris...58...Autistic...with Scitzophrenia...[ some vocal communication ... but limited to her needs ... 'Cup of tea now' ...'Slice of cake'......or sadly to her previous treatment years gone bye..'Dirty *****' ..'shitty Iris'...

Iris was a person sadly classed with challenging behaviour....and totaly unpredictable..

In the 6 weeks i stayed at the hospital prior to her leaving , the only thing that was apparent was at meal times Iris ate her food how ever hot it was at lightniing speed. Digestion was not her game... why... because 30 years ago you ate what you were given or someone else stronger than you ate it first....


Sadly years of this behaviour [including snatching boiling hot drinks and drinking them in one go] had paid a price.. soon into the 6 weeks stay at her hospital i was aware of Iris's bowel problem.. she had a pro-lapse of the back passage....she suffered tremendous constipation which caused this lady untold pain... When asked why the prolapse had never been addressed they said her heart could not take an opperation.

Within one year of living in her new home.. under a strict diet.. but regular/often meals... both her incontinence and eating/drinking habbits were normalised.

The prolapse was still there but we established her heart was fine, and 8 months later the prolapse was corrected.


Sadly in year 7 Iris became very manic and unstable and a stay in hospital was required to adjust her meds.. Because mental health staff dont understand learning disabillities we are require to be with clients whilst in hospital[ money issue once again.....one-one attention is required and cannot be supplied in pyschiatric wards to undiagnosed patients..]

sadly even money prevented us from staying overnight..so they had to support Iris at night..


I went in one mornining after three days off and noticed Aswelling in Iris' abdomen... when i asked the duty nurse she said she would look into this... two days later after many remonstrations a doctor ordered a ultrasound....


A plastic nurses appron was found in Iris' stomach/bowel [ i forgot to mention Iris would eat anything when stressed... though it was not forgotten on her medical notes]

Iris was given repeated ennamas then eventualy it camme away.


Two months later her abdomen swelled again...she had three mini strokes.. was confused and visible unwell. Whilst in hospital her abdomen swelled enourmously [ previously she was about 8 stone] she looked enourmous... she had not been to the toilet for 2-3 weeks dispite daily ennamas.

We were told Iris had a stangulated Bowel, and normally an opperation to remove some of the intestine and the fitting of a Collostomy bag would remedy the problem.. but they stated Iris was on too much medication and her heart could not take the opperation...

I was told there was nothing that could be done......[ but on the quiet a nurse told me that a surgeon had said that Iris would be a drain on resourses, and that was the clinical diagnossis], for not carrying out surgery]

The next 8 weeks were spent by her bedside watching her abdomen/body reduce to 4 stone of frailty.

I entered the ward on June 26th 2001... to see Iris for the first time show facial expression... whilst holding her hand... she whinced...her eyes shutting tightly....I knew she was in pain... and summoned a nurse...i explained my fears....

for the one and only time throughout all of her care i was asked to leave her bed side.....i returned upon instruction[ go for a walk] 25 mins later to be told Iris had passed away.....

I know Iris had been administered with Morphine additional to the normal daily amount because i read the notes two hours later.......


WHO DECIDED UPON iRIS'S LIFE.


David

if you read both sad and distressing stories

underneath the medical and social negligence

both Ladies....chose and decided the times of their death...

Kathleen.....gave up because she felt her mum had abbandoned her....[ sadly not the case] she most deffinately knew by not eating at regular times and drinking would be harmfull to her... she stressed this to all staff from day one in her own enigmatic way....

Iris i truly believe told me it was time ...with her expressions [ i had cared for this lady for 7..1/2 years and knew all of her looks/sounds/silence...] I believe the nurses who had seen me at hospital for many weeks [ i volunteered to work with Iris all the time she was in hospital] Knew i understood her reaction and relayed my concerns and helped her pass away peacefully.

The death of these two beautiful souls caused me untold distress and Iris' death was my reason to find alternative employment.

Life is sacred.... but ultimately god gave us all free will.... and as sad as it may sound ... occassionaly people choose to die before their designated time...

If there is a God then only he can judge those actions.......but i am sure that if God created free will........ then the choice to die peacefully and in dignity with as many faculties that are require for an in formed choice then... that rests with us all as humans...

Saying that those of impaired minds... also have a choice....


ODD you may say.... but in the throws of severe mental illness is an individual wrong or right if he/she takes their life............once again GOD will decide....

'Come un to me all that are suffering' ....springs to mind... maybe...just maybe...GOD is.. the nurse.. the practioner.. the support worker.. the family member.. who says 'This person is suffering its time to end the pain'

The elderly and the disablled need protecting from beurarcrats, that weigh up life with £/$....................LIFE /DEATH SHOULD NEVER BE MEASURED by money....................i stress to you all make a living will of your intentions caused by injury or infirmity... then at least you let your loved ones know what to do.

And yes the administration of Morphine is leagal as pain relief in hospital/home patient...... and ususaly when a person points out adverse pain/suffering then the administration is escollated... to reduce pain... yet sadly induce death....

David

Why am I not surprised that you'd be involved with Social Services for starters...so many of us start out with idealistic goals..we'll change the world or at least make a difference. ~sigh The fact that one wants to and gets involved is what we shouldn't lose sight of.

The concept of "group homes" does/can work but the placement of the residents is key to that. We had good friends with a downs syndrome son who was a joy to be with. They fretting constantly about the fear of out living him (he was their 4th child of six) and they felt it unfair to expect his siblings to have the responsibility of his care after they passed. After much researching they placed him in a group home with four other adults who had various disabilities and he thrived there for several years. He got a job sacking groceries at the supermarket...he learned how to ride the bus, he scolded his mother when she had him to dinner for making him fat..he lost weight. Everyone was so pleased until a new resident came to live there and the two of them didn't get along...AT ALL. He returned home and lived there until his parents died...now lives with a brother.

A second family put their daughter in a different placement...shared apartment type..and she is also thriving..working, going to the movies. Both seemed to achieve an independence that wasn't possible under their parents ever watchful eyes. They also had a tubal ligation done on her before letting her "go".

I wonder about them making this decision for her..if she had any awareness of the consequences. We make decisions for other people, confident that it's the right thing to do and in their best interests. But I wonder about that.

Alffe

I wonder too....................................

David

The only people I'd want to make decisions about my life are those who truly care for me.

One of my closest friends was born with cerebral palsy in the mid-1950s, and doctors told her mother to place her in an institution and forget about her. Her mother refused and raised Pat as "normally" as possible. When we were little, I used to think her mom was mean. One day we were both lying on the floor watching television, and her mother told Pat she couldn't watch TV until her room was cleaned. It took the poor girl 30 minutes just to get up off the floor, but her mother never gave her a break. She wouldn't even let me help clean the room.

My friend attended a school for disabled kids when she was young, but it wasn't enough for her because all the kids there were severely disabled. She had trouble with arm/leg mobility, but she was very intelligent. None of the public schools wanted her because they said her appearance would upset the other students. Her mother fought hard and got her placed in public schools.

My friend's mother knew what she was doing. She and her husband were older and knew they wouldn't be around long. From the beginning, she taught my friend to be independent.

Both of my friend's parents are gone now, and my friend lives alone in that house - along with her pets. She's able to drive a car with hand controls, graduated from college, and now teaches at a Catholic school that wouldn't take her as a student years ago. For recreation, she rides HORSES.

My friend learned special skills through special programs, but it was the love, strength and dedication of her mother that allowed my friend to succeed in life. I'm glad they were never separated from each other.

Have you read The Enigma of Suicide by George Howe Colt?
It's written with such compassion and humanity...there's a whole section devoted to the right to die. I highly recommend the book.

http://player.clipsyndicate.com/view...pid=&wpid=2057

Over dinner & margaritas last night our friends talked about a mutual friend of ours who had died last week...she had been battling altzheimers for two years..going in and out of it. When we read the obit. we assumed she had died of her disease...no, she had killed herself with her husbands gun. A clear choice, from a class act lady who didn't want to put her husband through that downhill slide.

When are we going to get smarter about end of life choices???