Incontinence

[frederickgt]

Anna has had a dramatic decline,she is now constantly incontinent,the pads I gave her dont seem to stop her from being wet or wetting her surroundings She has had a very recent assesment,the S.W agreed that I,an 80 yr old disabled husband can no longer care for her properly,and she should go into a home,unfortunately,the S.W. says she has no funding for that purpose,but suggests selling our property,I told her that my daughter still lives at home,and upon my death will inherit my half share of our property,(tenants in common)We have consulted a solicitor,who says a haly of a property has no sale value.
In the meantime we are still awaiting an outcome. My own health has suffered considerably, I cannot walk any distance without pain, I can do very little for my wife.
Anna does not recognise either of us, is unaware of her surroundings, or time of day.
Among the medication that I give her as well as
Aricept.there is a Heminverin syrup which seems to bring her swiftly to a sleepy condition, at the moment she seems to be comatose most of the day, she enjoys very little,and it breaks my heart to see my Anna so.She has been going to a day centre five days a week,at first that was very welcome for the break it gave me, but now, she is coming home sopping wet and with excrement in her knickers, I complained to the manageress of the day centre, and was told that (we do our best,but there is only so much we can do)
I am beginning to think that I will have to stop her going to the day centre, it seems that they are not able to do more than point Anna in the direction of the toilets, but cannot take her there.
Anna is totally confused and bewildered, she has very little quality of life. I am heart broken
Alzheimers is a ******.
Sorry to take up so much of your time.

 

[jenniferpa]

Gosh this makes me so angry. How dare your social worker tell you to sell your home. If they have a funding shortfall, it's their problem, not yours. If the assessment says that your wife should be placed in a care home and you are in agreement with that, then they simply can't turn round and say "but we don't have the money to do it". I assume from what you say you are aware of this. If you need the chapter and verse regarding this matter (i.e. CRAG - charging for residential accomodation guidelines) I can give it to you. The social worker knows that she can not ask you to sell a property in which you, the remaining spouse are residing. Does your local council have a complaint procedure? Well they have to have, but do you know what it is? Because this is the most outrageous thing I've heard for quite some time.

Have you had a visit from the incontinence nurse? There are a variety of different types of pads available. Also, has your wife been checked for a urinary tract infection? Because you mention a dramatic downturn, and a UTI can definitely cause that.

Appalled, absolutely appalled.

Edited to add. I think your local borough is Havering? Because this is the complaint page http://www.havering.gov.uk/index.cfm?articleid=645# our definition of a complaint

 

[frederickgt]

Thank you Jennifer,I am having a visit this coming Tuesday from another Sw. when incontinence will be discussed .I am trying to think what is best for Anna's careas I am no longer able to give her the care she needs,but can they?see my comments re the day centre.Anna looks like a zombie,is it the medication,or a further Alzheimers manifestation.

 

[Margarita]

S.W. says she has no funding for that purpose

Now don't listen to that as its against the law for them to tell you they no funding.

the day centre your wife going to sounds terrible , my mother go to Social services day center and they change her clothes if she was wet herself and have a bath room so would wash her if she mess herself .

Don't let SW get you down, tell her you no your right and they can't refuse your wife a care home , because of no funding and if she does not sort it out your going to make a complaint about her in what she told you , then if she does not get her finger out make a formal complaint

 

[Grannie G]

Dear frederickgt,

The lack of attention you and Anna are getting is disgraceful. You are being taken advantage of because perhaps you are unsure of your rights or are too polite or worn out to fight for them.

Is your daughter able to speak up for you. Sometimes there is strength in numbers.

I am so sorry you are having to suffer such an ordeal. Please take note of the wise advice you have been given by Jennifer and Margarita. The services are being negligent in the care of your wife.

Love xx

 

[Skye]

Dear Frederick

Jennifer's right, you have been treated very badly by your SS. Firstly, you should not be having to provide pads, you should have had a rferral to the continence advisor as soon as the problem started, and appropriate pads should be provided free.

Day care should be able to cope with incontinence, and they should also have suggeated teh incontinence advisor if they couldn't cope. Sending your wife home wet and soiled is not appropriate care.

And you should not have been advised to sell your house. As long as you continue to live in it, it is not included in a financial assessment. If your wife is assessed as needing full-time care, they have to provide it.

You sound at the end of your tether, Frederick, and I know how you feel. I may be reading more into your post than your are saying, but it sounds as if you are ready to let your wife go into care if you can find anything suitable?

If this is the case, then fight for it, it's your right. There's no shame in that, you've done wonders caring for your wife for so long. I've just had to make the same decision, and it's not easy, but there comes a time when it's too much for one person.

Please post again, I'll be looking for your messages.

Love,

 

[frederickgt]

Thank you for your help.I feel now that I have more ammunition,thank you again!
Can anyone tell me how I can access the factsheets? I would dearly like to print some.
Thank you again for your support and information,I feel that I have not done as well as I would like,but will do better.
That phrase takes me back to my schooldays so long ago,"Could do better"!

 

[jenniferpa]

Thank you Jennifer,I am having a visit this coming Tuesday from another Sw. when incontinence will be discussed .I am trying to think what is best for Anna's careas I am no longer able to give her the care she needs,but can they?see my comments re the day centre.Anna looks like a zombie,is it the medication,or a further Alzheimers manifestation.

While care homes vary, remember they have the person all the time. The day care seems to feel they can get away with sending your wife home like that for you to deal with, but that's not an option for a care home. So, I don't think you can extrapolate from one situation to another. Which is not to say that the day care place shouldn't be doing more, because they should. This is a health issue, quite apart from anything else. I'd be complaining about this as well.

Hemineverin is a powerful sedative so I'm not surprised that she's drowzy arfter taking it. Obviously there are pros and cons with all medication. Does she have it often? What happens if she doen't take it - it's often used to calm agitation but does she have this? It is, I believe addictive which isn't an issue unless she needs to stop taking it. What does the prescribing doctor say.

Can your daughter give some support with all this, as Sylvia suggests?

Also - have you had the carer's assessment to which you are enitiled?

 

[jenniferpa]

Fact sheets are here http://www.alzheimers.org.uk/factsheets

 

[Skye]

,I feel that I have not done as well as I would like,but will do better.
That phrase takes me back to my schooldays so long ago,"Could do better"!

Frederick, we all feel that, it goes with the territory!

The fact is, we're all human, and some of us have health problems of our own. We do as much as we can, and when we can't do more we hand over to the professionals.

With your wife in a NH, you'd be able to visit as often as you liked, without having the stress of having to cope with incontinence, etc.

On the other hand, you may feel you'd like to try for longer, in which case make sure you get a proper support package.

It's your decision, but you need, and desrve, more help.

Love,

 

[frederickgt]

Thank you Jennifer,Anna has had an assesment ten days ago,at the conckusion of which the SW stated that she agreed that she needed(Ana) care in a rest/care home,but funding was a problem.
Since then things have got worse,Ihave put my back out eiyjer trying to lift Anna,or changing bed linen,now I can Hardly walk,as you can see from the time 3:40 AM.i am not getting much sleep through worrying about my and Anna's situation.
Anna has now very little speech,Sarah my daughter,has been helping me a great deal this weekend,but she has to return to work Monday,
She agrees with me that Anna has an altered facial appearance,I believe that she has suffered a mini stroke,I am hoping to get her GP to make a house call Monday (tomorrow) to confirm this,I didnt give Anna any Heminveren last night,she is now like a zombie,will discuss all of this with her GP when he comes.
There is very little of my Anna left .
Once again.thanks for all your help.TP is a lifeline.

 

[Grannie G]

Dear frederickgt,

Please let us know what the GP says.

Take care xx

 

[Skye]

Dear Frederick, you do sound at the end of your tether.

Your Anna sounds very much like my John. He has cahnged so much over the last couple of months, and I too have asked about strokes.

John's sudden decline is the result of a UTI, so when the GP calls, make sure he tests her urine. UTIs can have a devastating effect on the whole nervous system, and are very common once the person becomes incontinent.

Obviously, I can't say that this is Anna's problem, but it's worth checking.

Let us know how you get on. If the doctor confirms that Anna needs 24 hour care, the SW will not have a leg to stand on.

Love,

 

[frederickgt]

9AM today sunday,Couldnt get Anna up off of the floor,have now called an ambulance,which has now taken her to hospital,Anna always refused to give a urine sample,lets see what the hospital can do. Hoping for a miracle.

 

[Margarita]

Was going to post this

The Government is making an additional £25m available to local authorities in England to enhance the provision of short-term, home-based respite care to provide cover in the event of an emergency.

There is considerable evidence that the lack of proper planned alternative care provision, in the event of something untoward happening, is one of the most important factors in limiting a carer’s freedom to have a life of their own.

£25m will be made available to English local authorities from October 2007 for the provision of such emergency respite care. Guidelines to local authorites, developed with stakeholders, were published on 11 July 2007.

* Emergency respite care: Determination of funding additional to the Carers' Grant for 2007-08, and guidelines to local
authorities

http://www.dh.gov.uk/en/Policyandgu...tsocialcare/Carers/NewDealforCarers/DH_075476

your SW should of not the the situation get so out of hand , you needed more support , SW should of given you a carer to help you wash clean your wife .

Now in hospital I do hope you push for a good assessment to get help for you caring for your wife at home , you have to be honest open with the hospital telling them you can't cope along please don't feel guilty saying that . Hospital can ring emergency social services talk to duty social worker , to organize care to help you at home when you wife better , while you look for good care home for your wife of you liking .

wishing you both all the best xx

 

[Grannie G]

Dear frederickgt,

I`m so sorry it had to come to this.

It now seems fairly usual that disaster strikes before you get help and I just don`t know what we can do about it.

I hope Anna is given the help she needs and you, at last feel you will be listened to.

Please let us know how thing develop.

Love xx

 

[Skye]

Dear Frederick

That's exactly how it happened with John. They couldn't get a urine sample from him, either (still can't), which makes it difficult to prescribe the specific antibiotic for the infection.

I do hope all goes well with Anna. They will manage to clear up the infection, it's the residual neurological damage that's the problem.

Let us know how it goes.

Love,

 

[Grannie G]

Can anyone tell me why it is so difficult to get urine samples when testing for UTI`s?
Babies are tested by the use of a `nappy test`. Why can`t those who are incontinent be given the same type of test?

 

[jenniferpa]

I don't know how they can do it for babies. Perhaps, with a baby, you can ensure that their nether regions are absolutely clean before hand, which is considerably more difficult than with an adult. I do know that to get an accurate test what you should be doing is cleaning the appropriate area and then getting is a mid stream clear catch, which I, frankly, find hard enough to do for myself. The problem is, once the urine comes in contact with skin that hasn't been properly cleaned it can be contaminated with the same bacteria that they will test for in the lab.

I'll say this though. While I'm fully on board with the concept of not prescribing antibiotics unecessarily, I think that a confused elderly person whose incontinence has recently worsened does not come under the category of uneccessary. I don't know if one would be successful argueing this, but the inability to obtain a clear catch sample should NOT mean that no antibiotics should be prescribed when there are clinical indications of an infection. Half the time they prescribe with just a dip stick test which in itself is not particularly accurate, so they're hardly being rigorous in cutting down antibiotic use anyway. It would be a different situation if they made an effort to obtain a sample and cultured it in every case, but we know they don't do that, because that would be "too expensive", even if it did mean that you could use a targeted antibiotic.

Sorry, but this just gets my goat. I'm darn sure that if you didn't have dementia and presented with all the signs of a UTI that you could personally explain (pain, urgency, odour, colour change, past history etc) the lack of a urine sample wouldn't automatically preclude the use of an antibiotic (although you probably wouldn't have any difficulty in providing one in that situation). If you want to cut down on antibiotic use., doctors should stop prescribing them willy-nilly to younger members of the population who present with a cold. Bah Humbug.

 

[Skye]

The difficulty in John's case is that even before he was totally incontinent, he couldn't wee to order. Asking him to go to the toilet before we went out, for example, was useless, though he could still go himself when he felt the urge. If he didn't feel the urge, he didn't know what he was supposed to do.

Now, since his first infection, he's totally incontinent, and as Jennifer says, it's a problem of sterility.

In hospital, they borrowed a kit from the baby ward. This is a sterile syringe which takes up urine from the nappy. Not too difficult with a baby, but with an adult, the timing is vitally important. The skin has to be sterilised, a fresh pad put on, and the urine collected before it has time to be recontaminated!

They only did it in hospital because I kicked up a fuss. There's no hope in the NH.

That's why they usually prescribe broad-spectrum antibiotics first -- but they often don't have any effect!