To Hospitalise Or Not?

[adele78]

My mother is in the late stages of Alzheimer's and is in her 5th year of being in a nursing home. She has been on a peg feed for 3 years but for the past few months has had alot of sickness which they describe as 'coffee ground blood'. When this happens they peg feed her just water until it goes away, she has lost alot of weight the last few months because of this. Yesterday, however, the nurse from the home rang to say that mother had been sick again this time more red than 'coffee ground' and asked what she should do.

This sounds cruel to some people but as she had a spell in hospital of 8 weeks leading up to Christmas and they didn't even explore where the 'coffee ground blood' was coming from, just nursing her like they do in the home, I said I didn't want her to go back into hospital. Unfortunately, I have no siblings to consult about this and feel really alone in my decisions. Am I right to say I don't want her to go back into hospital? Your advice would be really helpful.

Adele.

 

[Brucie]

I'd be getting her at very least a doctor, at most to the hospital to check up what is wrong, and I would ensure that they check up what is the blood problem.

Why wouldn't you want her to go back to hospital?

 

[adele78]

The reason I don't want mohter to go back into hospital is because when she was in for 8 weeks leading up to Christmas, I asked a couple of times if they were going to take her for an exploratory to see where the blood was coming from. No-one seemed interested in her. They fobbed me off and said that they would take her down to theatre but it never happened. It was obvious they were just going through the motions ie. nursing her. Also, I had already been asked to see the consultant and he informed me that they 'will not resusitate' . I think because she has no quality of life left.

In the end, I thought it better if she was very ill to stay in the nursing home instead of hospital, but I am full of guilt about this decision.

Regards Adele

 

[Brucie]

Hi Adele

First off, YOU are on the spot and are the best person to make judgements and take decisions! So whatever you have decided, don't feel guilty about it. You have evaluated the situation and have made an informed judgement.

Given the service given at your hospital, I'm not surprised at your decision.

I'm appalled at the way your hospital behaved. There must be routes to make official complaints about such cavalier treatment.

I didn't think it was within the power of a consultant to decide whether or not to resuscitate - they can advise [so I thought], but not make the decision for you. Perhaps someone else on the forum would know for sure.

I have a low opinion of many consultants on the basis of the care afforded to my wife, and if they worked at my local garage, I certainly wouldn't let them touch my car. The problem is that we get stuck with them and can't just move to the next garage/hospital.

We shouldn't have to take such important decisions about a health issue, but in the absence of competence from those who are paid to provide the care, we have to. We can only do our best, in the circumstances!

 

[adele78]

Thanks very much for your replies. It is such a dilemma trying to make the right decisions.

Speaking of the 'we will not resusitate' point. The same thing was said to me 3 years ago when Dad went into hospital. They said that they would not resusitate him if he deteriorated, because if the pneumonia that he had did not kill him, the cancer he had of the bile duct would.

Anyway, mother's sickness has ceased for the time being. However, she is still on water through her peg feed. The real test will be when she is back on the liquid food.

Regards, Adele

 

[carol]

Making decisions

The Alzheimer Society is a member of www.makingdecisions.org.uk

Go to their website, click on Campaign News, scroll down the next page to News Archive, click on MDA Campaign News Feb 2003-Feb 2004. Scroll down next page to Feb 2003, click on Who has the right to decide for us if we can't decide for ourselves. I don't know if the information is still current but I am sure that the Alz. Society would be able to tell you.

Best wishes to all.

Carol

 

[jools]

Hi Adele,

I agree with Brucie that you should get a GP to look at your mum at least. If you go for the hospital option, one thing that you could do is to get any of your friends or relatives who are medics to go and visit your mum while she's there. Its amazing how quickly they can straighten up, when they realise that someone who is a medic is taking an interest! They also pay more attention to patients who have lots of get well cards and regular visitors.
This is all terribly cynical, and I'm not tarring all doctors and nurses by any means; we've got a very caring consultant for my dad; but medics are as human as the rest of us and they come in good, bad and indifferent packages. They are also under tremendous pressure to provide care that they are not given the tools or money for. One of the grudges that they have against the likes of ourselves is that local authorities , in order to avoid paying nursing home fees, which they are liable for, send people who should be in a nursing home into hospital so that central government pays instead. That's why I think its important to get a diagnosis from your GP first, so that they know that they are dealing with a particular medical problem, and that it could be followed up by a medic. They have to send a copy of the result to your GP for his medical records, so its keeping tabs on them. Always be polite and thankful even if you think someone is being a right *******, and if someone does something good for your mum make sure you say to them. People rarely get thanked for doing their job, and they always remember those who do thank them. Yours,

Jools Machiavelli

 

[Brucie]

... and I agree with Jools.

I have found that it has helped me greatly to

• increase my medical knowledge so I can talk [or at least appear to talk] intelligently about Jan's condition
• copy communications to all relevant parties [for example, when Social Services sends me a letter, I copy it to the care home so they are aware of developments]
• visit Jan very frequently and build a relationship with the care home staff [to the point they think I'm one of them!]; tell them how much better they seem than staff at similar care homes [it is true so why not!]
• support the care home when they are under threat from Social Services etc
• build a relationship with the medical staff involved - show interest, gratitude etc, keep them regularly up to date.
• note when Jan seems to have a physical problem [impetigo, abrasions, etc] and ask the care home to call the doctor
• note when Jan appears to have changed her behaviour [falls over more then usual, is more distant, is more clear, is happier, is sadder, etc] and tell someone relevant
• most of all, show that Jan's care is fundamental to my own well-being

In a world where there is far too much demand for the resources we need, we need to differentiate ourselves. It does seem to work.

Final point: at the time Jan was still at home and things were going seriously pear-shaped, my first stage of differentiation was to be clear and open about how desperate things were.

Prior to that, when I was juggling all the plates alone, I got no help because - while I had made some noises about our problems - I had neither explained their enormity, nor stressed that is something were not done, I would be on their list of people to care for as well!

 

[Charlie]

Hi Bruce,

Thanks for that last post. Over the past year I have started to realise how important it is to become involved in dads care and to gather as much information as possible regarding his condition.

My experiece (so far) is that you can't leave it to others to manage and the least I can do is try and keep on top of things for him. I know that he'd have done the same with me and in a similar situation and it really helps me deal with the situation, emotionaly and on a practical level.

Thanks to Bruce and other members of the list, I have now started to keep a record of everything I can, particulary the contacts that have helped and the changes in dad's medication, condition and care.

Those key points are great advice!

thanks
Charlie....

 

[Norman]

Jools
a good piece of advice praise where it's justified, complain like hell when it's warrented.
My experience dealing with complaints,they outnumber the praise letters

Norman