New to TP

[Goofy]

Hello all,

We're new to TP, but I have been browsing the AZ website for a while now.

My FiL was diagnosed with pre-senile dementia (age 60) just over 3 weeks ago. The consultant said his condition was 'advanced'.

He doesn't really communicate, as he doesn't sem to hear when people speak to him, he doesn't make much sense when he speaks either. He doesn't recognise day and night, and no longer really sleeps, he spends all day pacing or standing right by you.

He recognises his immediate family (as people he knows), but doesn't always know peoples names. He believes his wife is his mother, and I am 'that lady' as he can't remember my name anymore.

My Husband & I live 3 hours away from his M & D, so my SiL and MiL have been caring on a day to day basis.

FiL has been very aggitated and has been getting more and more aggressive/verbal over the past few months.

He had been going to day care for the past week (this is privately funded as SS refused to pay for anything other than full time residential care - I think because they feel he is a danger).

Anyway we hit our crisis point on Friday.

He raised his hands to his daughter and I think this became the final straw. My MiL & SiL (who moved back home) had been hiding the knives, torches, rolling pins basically anything he could use as a weapon for a few weeks now, as they felt physically threatened by him.

It's strange to talk about the aggression he has, as FiL is a slight man, who has never raised his hands to his children, I've never heard him raise his voice or swear. This illness has changed his character completely.

Anyway on Sat morning (after another sleepless night) my MiL, Husband (we have been going over on weekends to help care whenever we can) and SiL decided they could no longer cope and asked SS for help with residential care.

He was placed on Saturday (yesterday) afternoon. This was the same home he has been in for day care.

This morning however, they rang and asked MiL to come and collect him as they couldn't cope with him. She refused and said if they couldn't how on earth were his family meant to.

I think they wanted her to take him to a hospital (I guess to a mental health unit).

She said no, as he has been aggressive enough towards his family (telling his children he has disowned them for trying to kill him etc), before they put him in care, and I can't see anyway he would willingly go to a hospital with them.

She rang SS and they interviened. They are trying to replace him tomorrow, but I suspect they will have him sectioned, so the doctors can medicate him, I suppose they may put him in a secure mental health unit too.

I'm sorry for such a long post but would like to know if anyone can answer:-

What happens if he is sectioned/ what if no care homes will accept him in future?

What are the next stages of dementia and approx how long is a patient in each stage? (he seems to be going downhill rapidly)

Any other things we should do or say to SS?

Many thanks in advance.

Helen

 

[Skye]

Hi Helen, welcome to TP. I'm sure you'll find lots of supprot here.

How awful for you that your FIL has deteriorated so quickly, but if he is so aggressive, there is no way your MIL could cope with him. Thank goodness she had the presence of mund to refuse to collect him.

Don't worry abouit him being sectioned, it's really the best thing that could happen. He'll be admitted to a secure NHS unit for assessment, and they will try to stabilise his behaviour with medication. It will then be their responsibility to find a suitable placement for him.

As for progression, I'm afraid no-one can answer that for you. Everyone is different. But it does sound as if your FIL is progressing very quickly, if it is only three weeks since diagnosis.

There are other members who have been through this situation, and hopefully will be able to give you more advice.

Take care,

 

[Lynne]

Hi Helen

Welcome to TP, although we all wish we didn't have to be here!

Getting your father-in-law properly assessed, and him getting the medication he needs, is probably the best thing for him. I'm not trying to say it will be easy, since sedation will have to make what seems to be a further change to his character, but what choice is there? None of us know what a dementia patient feels like 'inside their head', but I'm sure it's no pleasure trip. It must be awful to be confused, scared (which may well exhibit as aggression) and out of control.

My sympathies to you & all the family, but you have all done the best you can WHILE YOU COULD. It's got beyond you now, the S.S. will have to step in & help to make the necessary provisions.

(An afterthought: when he has been stabilised, please DON'T fall into the trap of thinking he can come back into the care of the family. I really think that would be too risky.)

Best wishes

 

[Cliff]

Hello Helen,

First of all, welcome to TP. It has helped me enormously and I hope it helps you too.

May I echo Lynne, this problem is so unpredictable - do not assume a good day, or seven, is for keeps - it isn't. This disease is so unpredictable.


Very best wishes,

 

[Nell]

Dear Helen,
What a nightmare for all of you, and especially your MIL and SIL, who have been doing much of the caring.

I agree with all the other posters. Much as we hate the idea of a loved one being sectioned, it can be the best thing for them (and for us). And I speak with personbal experience about this - altho' in my case it was

As a family, you need to stick together and support each other - and it certainly sounds as if you are doing just that.

As others have said, with medication can come further down turns, which is very hard to see but is virtually inevitable. Your dear FIL cannot continue as he is for his own sakke and that of others. He may well be drowsy or less responsive on drugs, but what is the alternative???

May I suggest that someone in the family keep a daily diary of his progress? That will help you determine what is happening with his treatnment. It is hard to remember exactly what happened when, or what outcomes you observed and when, if you don't have a written record. This could also help the doctors to sort out the best medication for him - over a period of time.

My best wishes to you and your family for the difficult road ahead.

 

[Goofy]

Thank you all for your replies.

One of our concerns was that if they stabilised his aggression they would say he was ok to come home, but we're concerned he'll turn again. I would think that once someone was classed a danger, they wouldn't risk reversing that diagnosis for fear of what might happen and the reprocussions.

He has been seeing the GP for just over 12 months, and they have tried various medications to calm him, none of which seemed to have helped. He than began to refuse to take it.

I know this sounds horrible, but the person we knew has gone, and the body thats left is unrecognisable. His wife at present doesn't want to visit him, as right now she doesn't even like him - but I think this is part of the guilt/grief/anger that she feels.

I think that perhaps my Husband and I can be more objective as we're not there day to day, so maybe our 'ties' arn't so strong.

It seems that he was aggressive towards the staff in the home (we're not sure if he actually hit one of them), refused to take any medication to calm him down, told them their food was 'not good' and tried to scale a fence to escape! This however is no different to how he has been at home in the past few weeks.

Fortunately SS seem to be taking control, as two 'crisis' teams have now been involved.

My MiL is going to see a solicitor soon to look at the legal aspect of things - something else to contend with!

Ideally she'd like to sell the house and downsize (the house and upkeep is too much for her on her own now), but she needs advice of the implications of this.

Thank you all for your help and advise.

And yes I'm glad that I found this site, but sad that we're all here!

 

[Goofy]

Just a quick update.

He is staying where he is for the next day or so whilst they (SS) try and place him somewhere more suitable (whatever that means).

There is a meeting tomorrow with MiL & SS, I think regarding funding (as when he was only going to day care they wouldn't pay). I imagine it'll be a short meeting as we have now moved on day care.

I can't believe how fast his deterioration is really. In someways perhaps it's a blessing as soon he may no longer be aware/frustrated/frightened/angry, but it's heartbreaking to see the change in him in a matter of days.

 

[jenniferpa]

Helen

You might want to reiterate to your MIL that she shouldn't sign anything without taking it away and have a a good read, and maybe seeking professional counsel. The whole funding thing is a potential mine-field. Theoretically, if your FIL is sectioned AND he is kept on section for a fairly long period of time, it will mean that full NHS funding will kick in. However, it may be that sectioning may not last very long, but he will remain as a willing patient (willing may not be the right word - people are often managed into this situation). In that case funding becomes an issue. Simplistically, a marital home that is still being lived in by the spouse is ignored when it comes to calculating assets and ability to pay. However, selling that home to downsize potentially frees the patients 50% share. I say potentially, because it doesn't always work like that, but it's something to bear in mind.