Records

[Padraig]

For the first time I'm reviewing the records that were maintained in our home during my wife's arrival from a NH. They make very interesting reading as they record the Medication, Client handling Risk, Messages, Home Nursing Record, Activities of Daily Living, Intervention and Catheterisations.
Total page count 29 over a period of nine months i. e. April to December.
Somehow I suspect many will be familiar with the; Client Handling Risk; it reads;
Patent's weight:
Below; 7 stone score 1. My wife weighed below 6 stone. Score 1
Mobility: 0 to 10. Totally dependent/Comatosed. Score 10
Medical additional Risks. Score 2 to7. Alzheimer's Score 5
Mental State; Confused unable to understand; ) 0 to 5 Score 3
Environment; Attachments (IVI catheter) 0 to 5. Score 1
Total= 20

Scores; 0 to 8 = Low Risk. 9 to 15= Medium Risk. 16 plus High risk. For palliative care
One of many remarks caught my eye: "Husband caring for Jean and well understands she is dying."
Nine months later Clients Handling Risks = 9 to 15 Medium Risk.
During those nine months she was rushed to hospital a number of times and on each occasion I insisted on her having her home. In addition many emergencies occurred in that time frame until finally the Rapid Response Team left, soon followed by everyone else. Four years later she passed away!
I hate to think what would have happened had I accepted all or even some of the expert's advice about her care. Many of our disagreements are recorded and I well understand that. One remark highlighted with a 'star' records that I 'stopped administrating Fentanyl every 72 hrs on the 3rd of the Sept.'
A big pity no one asked how come you managed to provide a worth while existence in the 'final stage'. There is no quick answer but many complex ones. One stands out: tackle the many underlying causes for example: pressure sores, not eating etc., etc.

 

[Coletta]

For the first time I'm reviewing the records that were maintained in our home during my wife's arrival from a NH. They make very interesting reading as they record the Medication, Client handling Risk, Messages, Home Nursing Record, Activities of Daily Living, Intervention and Catheterisations.
Total page count 29 over a period of nine months i. e. April to December.
Somehow I suspect many will be familiar with the; Client Handling Risk; it reads;
Patent's weight:
Below; 7 stone score 1. My wife weighed below 6 stone. Score 1
Mobility: 0 to 10. Totally dependent/Comatosed. Score 10
Medical additional Risks. Score 2 to7. Alzheimer's Score 5
Mental State; Confused unable to understand; ) 0 to 5 Score 3
Environment; Attachments (IVI catheter) 0 to 5. Score 1
Total= 20

Scores; 0 to 8 = Low Risk. 9 to 15= Medium Risk. 16 plus High risk. For palliative care
One of many remarks caught my eye: "Husband caring for Jean and well understands she is dying."
Nine months later Clients Handling Risks = 9 to 15 Medium Risk.
During those nine months she was rushed to hospital a number of times and on each occasion I insisted on her having her home. In addition many emergencies occurred in that time frame until finally the Rapid Response Team left, soon followed by everyone else. Four years later she passed away!
I hate to think what would have happened had I accepted all or even some of the expert's advice about her care. Many of our disagreements are recorded and I well understand that. One remark highlighted with a 'star' records that I 'stopped administrating Fentanyl every 72 hrs on the 3rd of the Sept.'
A big pity no one asked how come you managed to provide a worth while existence in the 'final stage'. There is no quick answer but many complex ones. One stands out: tackle the many underlying causes for example: pressure sores, not eating etc., etc.

Dear Padraig,

Ive always read your threads and been inspired by them. What these records show is so amazing and truly the power of love at work. To have Jean with you another 4 years is such an achievement.
I have regretted taking the advice of experts in the past when we were looking after MIL and wish we had gone with our own feelings, they're not always right.
Hope you are as well as can be and still manage to go for a run sometimes.

Coletta xx

 

[NeverGiveUp]

Interesting, isn't it. We have a little situation or 2 (or 4 or 6 or 8....) of our own.

Getting notes is a tad easier than getting blood out of a stone, but not much. What I've seen so far is a revelation, not least because it doesn't always tally with what happened or there are sections missing (a bit of persistance and those missing items somethings materialise).

What I have noticed is that there are criticisms of me eg 'we've had trouble with the daughter before' but no reason given as to what it was or why 'the daughter' was giving them 'trouble'. No mention in writing that we have got mum off most medication and all these years later she still has a quality of life where she can communicate, feed herself and, mostly, find the loo. Yet a medical professional waited until everyone left at the end of a horrible meeting and told me what a good job I was doing, why don't these people put those things down?

When mum was being drugged she didn't have much quality of life, a consulatant told me that I has 'unrealistic expectations', over a year later, we have serious problems but she isn't the cabbage they seem to think she was.

We have achieved this without any support whatsoever, yet no-one gives us any credit for keeping our family member not only alive but in a far better mental state than when she was in the hands of the 'professionals'.

It can feel very lonely and isolating as the system compartmentalises, I thank you for this post Padraig, I can go to bed tonight feeling lighter in my soul.

 

[Padraig]

Thank Coletta,

I'm doing as well as can be expected, and yes I'm running four times a week. You will be aware more than most as you read my last book, the benefits I derived from a stolen childhood. Many feel bitter after all the years of abuse, but with the experiences comes a fountain of knowledge.
To witness the sight of one child aged 6-7 yr. old dying from eating the wrong type of berries and the other child of 12-13 yrs old suffer a violent death gave me a not unusual perspective on life. There were no tears, but then had there been it would have meant I required comforting, not something I understood.
The day I walked free for the first time at age 16 dressed in my total worldly possessions, there was a whole world to explore and goals to achieve.
I was blessed in not having an adult to guide or advise me as I walked through life's orchard and took my fill of fruit. It never ceased to surprise me how others failed to even notice the fruit, and accepted without question what they were told or read. So much for a good education; it helps to function 'with in the box'.
It is often said and accepted that those without a 'good start in life and education' stand no chance of success. MY story shows that to be totally untrue as I've tackled life's challenges and learned in my own way.
The last of the four Psychologists assigned to Jean's case remarked of me: "You are like a surgeon, you solve problems using logic and do not let emotions to cloud your judgment."
It is said that God moves in mysterious ways. In a mysterious way He gifted me the power of love when I could most appreciated it, plus the ability to care all the way.

 

[Coletta]

Thank Coletta,

I'm doing as well as can be expected, and yes I'm running four times a week. You will be aware more than most as you read my last book, the benefits I derived from a stolen childhood. Many feel bitter after all the years of abuse, but with the experiences comes a fountain of knowledge.
To witness the sight of one child aged 6-7 yr. old dying from eating the wrong type of berries and the other child of 12-13 yrs old suffer a violent death gave me a not unusual perspective on life. There were no tears, but then had there been it would have meant I required comforting, not something I understood.
The day I walked free for the first time at age 16 dressed in my total worldly possessions, there was a whole world to explore and goals to achieve.
I was blessed in not having an adult to guide or advise me as I walked through life's orchard and took my fill of fruit. It never ceased to surprise me how others failed to even notice the fruit, and accepted without question what they were told or read. So much for a good education; it helps to function 'with in the box'.
It is often said and accepted that those without a 'good start in life and education' stand no chance of success. MY story shows that to be totally untrue as I've tackled life's challenges and learned in my own way.
The last of the four Psychologists assigned to Jean's case remarked of me: "You are like a surgeon, you solve problems using logic and do not let emotions to cloud your judgment."
It is said that God moves in mysterious ways. In a mysterious way He gifted me the power of love when I could most appreciated it, plus the ability to care all the way.

Padraig, you are unique! I doubt there is anybody on TP to have done what you did and to be so successful at nursing their relation back to a worthwhile life.
Im pleased to see you are as well as can be and still going running 4 times a week!

Coletta xx