Has anyone heard a story like this before?

Glenysjoy

Registered User
Jun 19, 2005
3
0
Isle of Wight
My mother-in-law has just been diagnosed with dementia. It is a big shock for my husband and I and comes after an extremely difficult 2 years. We were finding the relationship with my mother-in-law difficult but thought she was just being nasty to us.

Just over 2 years ago we finally came to the end of our tether at the estate we lived in and decided to move but my husband has very strong emotional links to the area and his mother so we ended up going to stay with her while we decided what to do next. When we moved in we discovered a lot of maintenance work needed to be done on the house and we set about doing it. She wasn't pleased, she hadn't asked us to do it and seemed to feel we were taking away her ability to cope. We also found there were squirrels in the roof but she was in denial about them and although she said she would ask the council if they'd come and deal with them when the council said they couldn't (or wouldn't) she gave up but at the same time did not want us to do anything about them even though they were chewing through the electric wiring for the house. My husband and his mother fought a lot and one morning the first words she said to him were 'you told me you wanted me dead' - he had said this in the heat of the moment several months before!

After we were there for 3 weeks the neighbour in the other half of the semi-detached house moved and new people came in. They were upset to find we were living there as they thought it was only an old woman next door. We soon met them when the squirrels started annoying them. We had trouble with them threatening us over the squirrels and then when we complained about their noisy christmas party.

The sale of our flat fell through so we moved back for a while. We contacted my mother-in-laws doctor, day centre, social services and Age Concern to tell them that she was not coping with her big house and large garden and try to get help for her, they all told us 'she's fine, she doesn't need your help, go away and live your own life'. Our flat sold and we still didn't have anywhere else to go so we went back to my husband's mother's house. She was nice to us for all of 2 days and then we stopped talking to each other for weeks.

One morning the squirrels woke us up extremely early and we had just had enough of them keeping us awake at night and waking us in the morning so I went down to talk to her about what she could do. We had shown her where the hole was they came in but she denied knowing anything. She told me she'd talk to the council again. My husband heard her saying she wouldn't do anything and shouted at her, kicking a stool in the process. The stool broke a window and the next thing we knew she was pushing him out of the way and heading next door to call the police! Sure enough the police came and my husband was arrested for criminal damage. He was told he was not allowed back there and treated very badly, they cautioned him after 8 hours custody and left him with a police record for 5 years. When we returned to collect our belongings a month later the neighbour called the police who leaned over my mother-in-law and told her he was not allowed to come there, they had no permit or injunction or whatever it is they needed.

We moved right away and again contacted all the authorities about his mother's ability to cope and again no-one listened (the doctor actually talked to her about it and told us 'your mother will deal with you'). We tried to put things right but when she seemed to be coming round she would abruptly change and go right against us. We finally gave up trying to contact her a year ago. The trouble caused us a lot of heartache and lost us friends, family and reputation as everyone took her side that we should have left her alone and not interfered.

A month ago we had a phone call that she had been found unconcious. We raced to the hospital and she was awake but not making any sense. We have been up several times since and when she came round to herself she was SO pleased to see my husband. It was like she has had a total personality change and now this uptight, worried, extremely sad person is suddenly gentle, kind, yes aggitated and sad, but also she now has a sense of humour. We were under the impression that she had suffered a stroke and she was transferred to the stroke ward. As soon as the neighbour told her my mother-in-laws solicitor went into action and comandeered the keys of the house declaring that she had been told by my mother-in-law that she did not want Anyone in her house without her being there. After the weekly meeting of the staff with the doctor we found the nurses/sisters not very forthcoming, in fact decidely reticent about talking to us. We thought some member of the family or one of her neighbours who had a grudge against us had said something and we were being pushed away again.

We finally met her doctor last week and found out what was going on. She had not had a stroke at all. The doctor bluntly told us - 'she has dementia, probably has had it for a number of years, I will not let her go home, she has to go into a residential home, you will have to sell her house, you will not have anything to do with it all'. He also mentioned that he had heard there was an injunction against my husband (which we quickly determined there was not!).

So now we are reading up on dementia and can see for ourselves that she had this well before we went there 2 years ago and that the dementia is the root cause of all the trouble. For instance we remember when she blamed a neighbour for stealing her valuables which she had hidden and didn't find them for months, that was years before we stayed there. It makes us doubt everything she has said to us in the past 2 years or more. Now we are trying to get a solicitor to help us get an independant doctor to assess her and determine whether she can give Enduring Power of Attorney to my husband, her only next-of-kin. We also want to sue her doctor who didn't listen to us or diagnose this illness 2 years ago (it's not as if she didn't see him much - she has been hyperchondriac for decades and was there every week). We don't want to tell too many people in the family yet as we are scared they will not believe us and they are so against us we worry they will try to stop anything we do.

We have had such a tough time because of this illness without knowing why and now we have something to pin it on it is a relief of kinds but also a major shock to realise we are losing her. Does all this sound extreme to you or is it par for the course with dementia?
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi Glenysjoy

Welcome to TP. I'm sorry you have been having such a hard time.

It is not unusual, though the situation regarding the police, plus the neighbours is an added complication!

Firstly, if I were you, I'd forget about suing anyone, especially the doctor. It will be a drain on your physical and mental resources, and it is not unusual for a GP not to believe relatives - it happened to me with my wife, and we didn't get a confirmation of the diagnosis I had made [and was discounted straight away] for another 4 years. Frankly, unless there is proof of some gross misconduct, I don't think you would get anywhere.

Certainly try the Enduring Power of Attorney [EPA] route, if it is not too late for her to understand what it is about.

You have to be especially careful what you do when around someone with dementia, and most especially in the early stages when parts of their brain are still functioning more or less normally.

Clearly she remembered your husband saying he wanted her dead, but I'm sure he didn't. I'm assuming it is more likely that in her condition she may have said "you'd rather have me dead" [this is not uncommon], and your husband, in the heat of the moment may have said 'yes', while obviously not meaning it. He may not even have said it, she may have wrongly inferred it from his agitation. Considering that dementia is something that primarily affects the memory, it is amazing how some things do stick! Always the wrong things.

We all get very frustrated from time to time with the person with dementia. The thing we must never do is anything that might make them more agitated or might frighten them more than they are already. Even seemingly small things like kicking a stool can have awful consequences, as you have found.

Whatever she says or does, always remember, it is not HER speaking or doing it - it is the dementia. She can't help her behaviour and understanding of the world and you can't change either of them.

Take things step by step. You need to find out whether there is any funding available for her care, whether the EPA is possible, and so on.

Others on Talking Point will be able to recommend things to do better than I can.

Best wishes
 

Glenysjoy

Registered User
Jun 19, 2005
3
0
Isle of Wight
Thanks Bruce, we are really having a struggle here. We suspected something was wrong when all this happened 2 years ago but just thought she wasn't coping with the large house and garden and was being nasty to us. I am constantly trying to remind my husband of this now that we know. It's hard after 2 years thinking one way to readjust the thinking.

Today we have been trying to find a solicitor to help us with the EPA - unsuccessfully. They all said to us that if she has been diagnosed with dementia then she can't sign for EPA - even a solicitor reccommended by the Alzheimers Society!! We feel like everyone is fighting against us and trying to shove us out of the way.

The Alzheimers Helpline was helpful with some ideas such as PALS and some websites to find an independant doctor so we'll keep trying to get somewhere.
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
Dear Glenysjoy, you have been having a tough time of things. I am surprised that you have had no joy with the EPA. Lionel was diagnosed with Alzheimer's desease in the January. We did not start to go down the route of EPA (still in shock I guess) until the May. We had no trouble in getting said EPA drawn up.
So my advice would be to carry on trying. Hope you start getting more help with the situation soon.
Would endorse Bruce's advice on taking on the doctors, re the delay in diagnosis. Like Bruce I tried for 3 years to get someone, anyone, to listen to my fears re Lionels psyciatric state. Do let us know how you get on, and if anyone on TP can be of help. Connie
 

Jude

Registered User
Dec 11, 2003
2,287
0
70
Tully, Qld, Australia
Dear Glenysjoy,

Yes, do keep on with the EPA registration. My parents were diagnosed with AD a full six months before I arrived home from o/seas and found out about it myself. I had no trouble at all in obtaining an EPA.

When you review the events of the past couple of years in quiet moments, you will begin to see that all the nastiness, lies and odd behaviour were probably a desperate attempt by your MIL to mask her illness and fears from others and to try and soldier on alone. She would have known that something was going radically wrong and would have been fighting it every inch of the way!

As Brucie has said, that would have been the AD talking and not your MIL.

Jude