Rapid Decline

[nimbus11]

My BIL was rushed to the main A & E because the little dementia hospital he was originally admitted to (with delusions) could not wake him! he did come round but had several fits and a brain scan that showed nothing, however he is now doubly incontinent, unable to walk, cant talk and has lost the ability to swallow, one eye wont open and when the other is open often there is no one home.

No one seems to think that this rapid decline needs further investigation - he has stopped fitting and has had a PEG fitted so I guess the next stage will be a nursing home.

We got a call late sat night to say they could not wake him again and that they had a "do not resusitate regime in place" (we had not been consulted on this) we were told to prepare ourselves for his death, the next morning he was saying hello to the nurses - we think he had a reaction to diazipan??

It is absolutely heartbreaking to watch a 58 year old man who lived on his own until Xmas without any carers etc now reduced to the shell that he is - the doctors at the hospital dont seem to appreciate what a catastrophic downturn there has been - they just see an "old man" with dementia, we feel so helpless, should we be making a fuss to find out why this has happened ? or are we in denial that this is "normal" for people with early onset.

Its devastating....

I always thought that Alzheimers was a long slow process but was not at all prepared for this fast worsening - has anyone else experienced this?

 

[FifiMo]

Hiya,

I don't think it can do any harm to provide the medical folks with as much background information as possible. Was your BIL put on any medication, apart from the diazepam, when he was being treated for his delusions? My grandmother, many moons ago, had a similar type of reaction when admitted to hospital for her dementia problems and it was all due to the medication and it being way too strong for her. I have to say, that once they got the medication sorted out that she recovered quite well and didn't ever experience any seizures again.

There was new legislation introduced last year to ensure that everyone irrespective of age gets the treatment that they need so don't be afraid to speak up on your BIL's behalf and insist that things need to be properly addressed irrespective of his dementia etc.

Fiona

 

[tre]

I have not experienced this personally but via the support group members I have heard of a couple of similar incidents, both with early onset dementia and both involving fitting. Sadly neither has managed to get back to their old selves.
This is such a cruel illness. I am so sorry for you and your family
love Tre

 

[seaurchin]

Hello,

I'm sorry to hear about your situation.

My husband has YOD and developed epilespsy as a result. The latter is now quite well controlled with medication but each time he has a seizure there is a decline in his abilities. Though not so dramatic as without any medication.

It is a heartbreaking condition. So sorry...

Helen x

 

[nimbus11]

MDT Meeting - any tips?

Hi All

We have been given a date for the MDT meeing as my BIL needs to be in care of some sort not in hospital, he is dpubly incontinent, bedridden, being fed by a PEG as unavble to swallow and cant communicate - although he does smile occasionally.

Any tips for the MDT would be gratefully received, we have no idea what to expect.

Thank you

Deb

 

[FifiMo]

Hiya Nimbus,

These meetings are usually fairly casual with everyone, including you having a chance to contribute. The question will be about the next steps for your BIL and how his needs will be met.

As you will have to go look for a home, the first thing I would ask is what type of home do they consider is necessary to meet all your BILs needs. Ask them whether that type of home would meet his future needs right through to end of life care, because you wouldn't want him having to be moved again. Ask for them to provide a list of such homes in the area.

Ask how they consider the home would be funded. Ask them to carry out a CHC assessment before he is discharged to see if he qualifies as he now has complex nursing needs that even you can see. If nothing else, he should qualify for FNC Funded Nursing Care, which can only be granted by having the CHC assessment carried out.

Ask them what they consider the timing of his discharge is likely to be. Don't let them rush you into having to find somewhere quickly. Tell them that if he does have to go somewhere else first, that this should be done as after care for which the NHS pay for first 6 Weeks. Let them know you know your stuff in terms of entitlement under the safe discharge procedures.

Hope this helps as a starter.

Fiona

 

[nimbus11]

Hiya Nimbus,

These meetings are usually fairly casual with everyone, including you having a chance to contribute. The question will be about the next steps for your BIL and how his needs will be met.

As you will have to go look for a home, the first thing I would ask is what type of home do they consider is necessary to meet all your BILs needs. Ask them whether that type of home would meet his future needs right through to end of life care, because you wouldn't want him having to be moved again. Ask for them to provide a list of such homes in the area.

Ask how they consider the home would be funded. Ask them to carry out a CHC assessment before he is discharged to see if he qualifies as he now has complex nursing needs that even you can see. If nothing else, he should qualify for FNC Funded Nursing Care, which can only be granted by having the CHC assessment carried out.

Ask them what they consider the timing of his discharge is likely to be. Don't let them rush you into having to find somewhere quickly. Tell them that if he does have to go somewhere else first, that this should be done as after care for which the NHS pay for first 6 Weeks. Let them know you know your stuff in terms of entitlement under the safe discharge procedures.

Hope this helps as a starter.

Fiona

Many many thanks Fiona - thats exactly the sort of information we need.

 

[nimbus11]

Hello,

I'm sorry to hear about your situation.

My husband has YOD and developed epilespsy as a result. The latter is now quite well controlled with medication but each time he has a seizure there is a decline in his abilities. Though not so dramatic as without any medication.

It is a heartbreaking condition. So sorry...

Helen x

Hi Helen

I was unaware that YOD could cause Epilepsy - perhaps thats what happened. Glad to hear your OH symptons are controllable, although the decline every time is awful, you are right it is an awful disease that seems to affect all areas of life.

Debbie xx

 

[nicoise]

Hi Helen

I was unaware that YOD could cause Epilepsy - perhaps thats what happened. Glad to hear your OH symptons are controllable, although the decline every time is awful, you are right it is an awful disease that seems to affect all areas of life.

Debbie xx

Perhaps it's not always t so much that YOD causes epilepsy, but that some sort of neurological event or change is the cause of both. Sadly it seems that whilst there may at some point be a diagnosis of the cause, by then irreversible changes have occurred, and thus the only option becomes how to care for a person who has suffered those changes.

So very difficult and sad for all involved though.

 

[nimbus11]

Perhaps it's not always t so much that YOD causes epilepsy, but that some sort of neurological event or change is the cause of both. Sadly it seems that whilst there may at some point be a diagnosis of the cause, by then irreversible changes have occurred, and thus the only option becomes how to care for a person who has suffered those changes.

So very difficult and sad for all involved though.

Our BIL said to us when in A&E - "something has happened in my head"

We were told by the hospital that they will only be able to say whats happened when/if they do an autopsy!! we had rather hoped that some treatment would be available and a magic wand waved, we realise now that we have to accept that all that can be done is to make him comfortable and that there will be no improvement.

We had prepared ourselves for the long haul but it seems we have skipped several stages of the disease in a few short weeks..

 

[nimbus11]

MDT meeting today

Well we had the MDT meeting today, although BIL is fed only through a PEG, bed bound, doubly incontinent, unable to communicate, he is considered borderline to g before the panel who decide whether he is elligable for CHC. I dont know how he could be worse so cant understand why he is borderline - any ideas??

 

[Jessbow]

Because they dont give it easily!

Absurd isn't it? ike you say, he couldn't be worse off really.

Sad times we live in

 

[nimbus11]

Because they dont give it easily!

Absurd isn't it? ike you say, he couldn't be worse off really.

Sad times we live in

If he was difficult or if we hadnt had the PEG fitted he would automatically qualify! we are still waiting to hear, have put his house on the market as it will have to be sold anyway, horrible clearing personal effects even if its just junk really, when they are still here its so heartbreaking.

 

[stanleypj]

Debbie,

Although clearly your BIL has suffered a major decline, it's worth bearing in mind that Diazapam is not recommended for people with dementia. I understand that this is because of the risk of serious neurological side-effects. You'll see that epilepsy is also mentioned:

http://en.wikipedia.org/wiki/Diazepam

Not a lot to be done about this at the moment but it is a little encouraging that the effects can take months to pass.

Take care

 

[nimbus11]

Debbie,

Although clearly your BIL has suffered a major decline, it's worth bearing in mind that Diazapam is not recommended for people with dementia. I understand that this is because of the risk of serious neurological side-effects. You'll see that epilepsy is also mentioned:

http://en.wikipedia.org/wiki/Diazepam

Not a lot to be done about this at the moment but it is a little encouraging that the effects can take months to pass.

Take care

thanks for that info - BIL was much brighter today - managed a few words, was shouting

 

[donkey]

hi debbie, sorry for what ure going through but thought this may help, dave was put on diazapam recently and was almost comatose for three days and that was the lowest dose. dave has chc and is doubly incontinent canot comunicate at all and has no mobility. after five years they are sure dave has cortical basal degeneration with parkinsons but wont really no untill autopsey. its devastating to watch he dosnt have fits but has continuall myoclonic jerks dave is 58 when dave was in hospital thats when he had his assesment for chc if it was me i would insist on this i think you are more likley to get it while bil is in hospital, good luck love lyn xx

 

[nimbus11]

hi debbie, sorry for what ure going through but thought this may help, dave was put on diazapam recently and was almost comatose for three days and that was the lowest dose. dave has chc and is doubly incontinent canot comunicate at all and has no mobility. after five years they are sure dave has cortical basal degeneration with parkinsons but wont really no untill autopsey. its devastating to watch he dosnt have fits but has continuall myoclonic jerks dave is 58 when dave was in hospital thats when he had his assesment for chc if it was me i would insist on this i think you are more likley to get it while bil is in hospital, good luck love lyn xx

Thank you Lyn, wow very similar situation, age etc, Bob was diagnosed about 2 years ago, so we are surprised to find ourselves so far down the line. feel for you both. xx

 

[sunray]

seizures

My husband Ray passed away last September. He had fits and seizures for the last nine months of his life. He had had some in the two year period before that but not the ones that rendered him semi-conscious for hours at a time. He was said to be "rousable but unresponsive".

Clearly the siezures cause a downturn, firstly diminished strength and then diminished comprehension until before the end, in the last few months I doubted he understood much that I said. The seizures were put down to old scarring in the brain and the amount of brain damage the seven strokes, TIAs etc had caused.

I think epilepsy in some form is quite common in the late stages of vascuar dementia, not sure about other forms. The medication for epilepsy slows the thinking down and affects decision making anyway so I guess nursing home care is the only answer where most decisions are taken away anyway.

Good luck with getting some funding to help with his care.

Sue.

 

[nimbus11]

My husband Ray passed away last September. He had fits and seizures for the last nine months of his life. He had had some in the two year period before that but not the ones that rendered him semi-conscious for hours at a time. He was said to be "rousable but unresponsive".

Clearly the siezures cause a downturn, firstly diminished strength and then diminished comprehension until before the end, in the last few months I doubted he understood much that I said. The seizures were put down to old scarring in the brain and the amount of brain damage the seven strokes, TIAs etc had caused.

I think epilepsy in some form is quite common in the late stages of vascuar dementia, not sure about other forms. The medication for epilepsy slows the thinking down and affects decision making anyway so I guess nursing home care is the only answer where most decisions are taken away anyway.

Good luck with getting some funding to help with his care.

Sue.

Hi Sue
Thanks for the post and so sorry to hear about your husband Ray, Rob never had any fits as far as we know before he went into hospital (he lived alone so it could of happened?) anyway he is unresponsive again and possibly has a chest infection, he has no ability to make any decisions and all his needs must be anticipated, we will wait to see what the panel decides and of course it is now a new panel so not sure how they will act.

x

 

[nimbus11]

Fantastic News!

I am pleased to say that my BIL has been approved for funding, we no longer have the head/heartache of selling his house and possesions.

Now to look for a suitable nursing home for him!

Thank you for tips and support.