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Helllo, new member here, not sure where we go from here, advice welcome...

Honey08

Registered User
Nov 13, 2013
9
0
Hello all,
I have joined this forum to try and find a way forward in helping my mother in law and her care. She was officially diagnosed with alzheimers and dementia just over a year ago. She hasn't been too bad until recently. We have managed. She has just been forgetful really. About two months ago she has started to decline. She often doesn't know who people are (more recent members of the family, such as myself and grand children). She phones my husband at work to ask why she is in this house (her house) and why people have stolen her furniture and put it there. She thinks her parents and aunt and long dead husband are alive. Her house is awful. She hides used teabags, lets food go well off, but won't let us near the fridge, getting very uspet and aggressive. She has refused help for a long time, getting annoyed that we suggested it. The idea of a care home terrifies her (her mother had dementia and ended up in a not very nice home, I believe). We set up LPA last year, and have now applied to activate it. My husband and sister in law are exhausted and upset with trying to cope. I often work away, and hubby is left with child and animal care too, often not being able to get away from his mum's until 9pm, then he has to muck out stables etc. Money is really tight so we can't even pay for cover for that at the moment.

We had a family chat, and decided that she would be better in a care home really. We looked at a couple and found one that is superb. MIL would self fund, so all good. Social services came two days ago, but MIL was superbly eloquent and the most normal she'd been for ages while the lady was there (reverting to not knowing where she was the minute the lady left the house), so the social worker wants her to stay in her own home. We also took her for a meeting with the manager who runs the care home, and again she was superbly normal, insisting that she wasn't going into care, then again once home she got all upset begging us not to leave her alone in the house.

What is the way forward when the dementia sufferer is relatively ok for part of the day, not wanting help, then completely changes mid afternoon into someone who is really the equivalent of a toddler? Even her GP noticed a huge change in her last week and said it was time to think of getting her safe in a home, but the GP has no power to help, it has to be social services!

So frustrating and worrying! Sorry for the essay!
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Hi Honey08 and welcome to TP

Sorry to hear about your situation, it is so sad but so common

Have you all tried writing down EVERYTHING she does/doesn't do/the behaviour literally everything so that you can pass this on to who ever needs it. My MIL can put a really good show on in front of strangers and appears 'normal' (not the correct word so I hope no offense to anyone). I had to do that with her i.e. not washing not eating, taking a months tablets in a week, then no medications for over a month, anger literally everything. It is time consuming but worth it in the end
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Just a thought does she get attendance allowance? Do you or your husband get carer's allowance, have you contacted Alzheimer's society for advice?
 

Honey08

Registered User
Nov 13, 2013
9
0
Hi, thanks for the replies. No she/we don't get any allowances. We have just started to contact people and look into options this last week or so, previously we have been able to manage.

I was actually thinking of videoing her last night, to have a record/proof of what she is like. Do you think that is viable/allowed? But yes a list would be good.

To be honest, the social worker who came didn't seem to want to know much. I wanted to show her around the house, for her to see the state of the fridge/her bedroom etc, but she didn't take me up on it, and she also kept changing the subject "so we don't upset you anymore" when my MIL was starting to get upset/mixed up.
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
I am not sure about the videoing but is your MIL self funding? If so, you don't need Social Workers involved as your MIL will be paying. List is vital though, it is often suggested on here and it could be given to who ever like I said.

Also with the list you could write to the SW and say you are withdrawing all help and therefore they are responsible. No one HAS to do the caring of family members if they don't want to/can't
 

Honey08

Registered User
Nov 13, 2013
9
0
I am not sure about the videoing but is your MIL self funding? If so, you don't need Social Workers involved as your MIL will be paying. List is vital though, it is often suggested on here and it could be given to who ever like I said.

Also with the list you could write to the SW and say you are withdrawing all help and therefore they are responsible. No one HAS to do the caring of family members if they don't want to/can't

Yes she is self funding. We do need social workers involved to be able to have her go into care, don't we? SW has suggested ways of caring for her so that she can be at home still (which she says that she wants when "normal" but doesn't want when suffering more). When I say ways of caring, I mean that we would pay for, which is fine. We just think she would be safer and better off in a good care home..
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Do you mean MIL would pay of care at home? How would you get her to pay??? If you withdraw all help maybe the situation will be really highlighted. Hard I know but sometimes it is the only way to get help.
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
I don't think you need a SW if one is self funding but I am not 100% sure. Others will be coming on and hopefully will give you more accurate advice

We have looked at Care Homes for MIL for when the time comes and nothing has been said about SW's as MIL is self funding
 

betsie

Registered User
Jun 11, 2012
252
0
My dad is self funded and has had no social services involvement. It was a decision we made as a family and the home came to assess him. Social servies do not need to give you permission to put your mother in a home if it is self funded.
 

Honey08

Registered User
Nov 13, 2013
9
0
Our issue is that you can't just decide to put someone into a care home, even if they are diagnosed with dementia and their doctor thinks its best for them, you have to have them assessed by social services who can say they have to. Until then they can only go into a home if they agree, which MIL won't agree to, in her head she is perfectly capable at home and doesn't remember the (frequent) times when she is scared and upset about living alone... And as for how she will self fund - we have activated lasting power of attorney. Does that make more sense?
 
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1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Our issue is that you can't just decide to put someone into a care home, even if they are diagnosed with dementia and their doctor thinks its best for them, you have to have them assessed by social services who can say they have to. Until then they can only go into a home if they agree, which MIL won't agree to, in her head she is perfectly capable at home and doesn't remember the (frequent) times when she is scared and upset about living alone... And as for how she will self fund - out of her pension and savings, this can be done, we think, as we have activated lasting power of attorney. Does that make more sense?

Its good you have POA!

My MIL would never consent to go into respite/day centre but she has no choice as awful as that sounds because it is for my sanity. Once there she is fine. The social worker did explain it all to her but she could not take it in. I must say the social worker we had was fantastic and believed everything I told him
 

Honey08

Registered User
Nov 13, 2013
9
0
When my MIL saw the social worker and lady from the home that we were hoping to send her to for respite, she behaved so normally and answered all their questions pretty well, stressing that she wanted to stay in her home, so they both said she was not at the stage where they could not give her a choice.. Then when they had gone (two separate occasions) she reverted back to the frightened, confussed etc behaviour and begged us not to leave her living alone.
 

Witzend

Registered User
Aug 29, 2007
4,289
0
SW London
Yes she is self funding. We do need social workers involved to be able to have her go into care, don't we? SW has suggested ways of caring for her so that she can be at home still (which she says that she wants when "normal" but doesn't want when suffering more). When I say ways of caring, I mean that we would pay for, which is fine. We just think she would be safer and better off in a good care home..

It is over 6 years ago now, but we had never involved SS with my mother's care, and when it was time for a care home (and it was really overdue) we went ahead and arranged it ourselves - of course it did take quite. a while to find the right one, a specialist dementia home. The home did ask for an assessment or report from a SW, but it was very much a brief, tick box exercise since they understood that we had not involved SS before. Quite frankly I don't see how a mere half hour with someone they have never met before can ever be anything but a formality. I have a feeling it was arranged by her GP, who was aware of the state of her dementia.

My mother was not aware of being assessed for the care home. We had never discussed it with her - it would have been pointless, since although she was very bad by then, according to her there was absolutely nothing wrong with her. Should add that she was not 'in denial' - her memory was so bad that she honestly believed she was still managing everything herself.

The woman who came for the 'chat' was very pleasant and tactful, and certainly didn't ask her whether she wanted to go into a care home. If she had, the answer would have been a most definite 'No!'
 

Honey08

Registered User
Nov 13, 2013
9
0
Thank you all.

We have a carer coming today to work out how we can get some help with her while she is at home, and are going to take her to the lovely care home for a visit on Sat to try and get her to realise that its not a frightening place like her mother went into and see if it helps her feel better. We had another horrific night last night, sitting with her from leaving work to bedtime while she got very distressed about the thought of being left alone in a house she didn't think was hers. We did take some video footage to show the care firm what she is like later on in the evening. Cross your fingers.
 

Jany

Registered User
Nov 27, 2013
31
0
South-East England
How did you deal with mother who thinks she's OK?

It is over 6 years ago now, but we had never involved SS with my mother's care, and when it was time for a care home (and it was really overdue) we went ahead and arranged it ourselves - of course it did take quite. a while to find the right one, a specialist dementia home. The home did ask for an assessment or report from a SW, but it was very much a brief, tick box exercise since they understood that we had not involved SS before. Quite frankly I don't see how a mere half hour with someone they have never met before can ever be anything but a formality. I have a feeling it was arranged by her GP, who was aware of the state of her dementia.

My mother was not aware of being assessed for the care home. We had never discussed it with her - it would have been pointless, since although she was very bad by then, according to her there was absolutely nothing wrong with her. Should add that she was not 'in denial' - her memory was so bad that she honestly believed she was still managing everything herself.

The woman who came for the 'chat' was very pleasant and tactful, and certainly didn't ask her whether she wanted to go into a care home. If she had, the answer would have been a most definite 'No!'

Hello Witzend (great name by the way!)
I was interested by your post. How did you deal with a mother who, according to her, is perfectly OK and doesn't need a care home? What happened when your mother arrived in the care home?

My mother moved to a care home two weeks ago. It was largely my idea. She was willing to do this and realised she couldn't cope at home. But now, after two weeks, she claims she's perfectly OK, nothing the matter with her, and please can I take her home now, today, immediately. I am getting daily phone calls to this effect. Some calls are very distressed, some are lucid and insistent. She sounds quite logical. Anyone listening to the call would say she is logical, calm and convincing. The problem is, that she's nearly 90, has been diagnosed with Alzheimers symptoms, and was sick from eating putrid food from her fridge. She can't remember any of that though.
 

Witzend

Registered User
Aug 29, 2007
4,289
0
SW London
Hello Witzend (great name by the way!)
I was interested by your post. How did you deal with a mother who, according to her, is perfectly OK and doesn't need a care home? What happened when your mother arrived in the care home?

My mother moved to a care home two weeks ago. It was largely my idea. She was willing to do this and realised she couldn't cope at home. But now, after two weeks, she claims she's perfectly OK, nothing the matter with her, and please can I take her home now, today, immediately. I am getting daily phone calls to this effect. Some calls are very distressed, some are lucid and insistent. She sounds quite logical. Anyone listening to the call would say she is logical, calm and convincing. The problem is, that she's nearly 90, has been diagnosed with Alzheimers symptoms, and was sick from eating putrid food from her fridge. She can't remember any of that though.

Hi, very belated reply, sorry! I am afraid we had to get my mother there by deception - told her we were going for a drive and maybe out for lunch (partly true since the CH had advised arriving shortly before lunch.

It was all planned like a military operation, sister and I took her the 60 miles to a CH near me, brother and BIL followed with her things, packed on the quiet by sister the day before. We had the added problem that for ages she had refused to leave the house at all, so we enlisted the help of the GP who prescribed Valium and thank heaven it worked. I don't know what we'd have done otherwise, since by then she honestly wasn't safe to be left alone at all.

Of course she wasn't a bit happy when told she was staying there (sister was brave enough to tell her, I couldn't face it) - very angry/upset and accused us all of just wanting her money, there was absolutely nothing wrong with her, etc. etc. she asked endlessly to go home for ages, and we just had to come up with heaven knows how many little white lies - mostly me, since I live closest and thus visited by far the most often.

I can't pretend any of it was nice or easy, but by then it was the only way. She simply wasn't safe at home any more - it had been a constant serious worry. Over the years I had done masses of regular 'sleepovers' with her and I don't mind admitting I had found them a great strain, so having her to live with us was out of the question. Besides which we had been through all this before with FIL, and after having him to live with us there was absolutely no way I was going to put myself and OH through that again - it had meant giving up my entire life, plus no peace ever for very hardworking OH during evenings and weekends, not to mention hardly ever getting an undisturbed night's sleep.

Must say I don't understand when people say you can't put someone in a care home if they refuse to go. What do you do otherwise in situations like ours? I am sure we are not the only ones who have had to manage it without the consent of someone who has long lost any capacity to be able to judge anything for themselves.
Of course we all felt awful and absolutely hated putting her through all the trauma and upheaval, but by then to be honest we had already put it off for too long.
 
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