What to do now?

[Karyn]

Hello Everyone
Ive joined this forum as my mum and I need some help with my Nan (my mum's mum)
My nan has been living in Spain for the last 17yrs with my gramps. They moved out there for health reasons, my gramps had severe asthma and a warmer climate was suggested to him by his GP.
It was about 6 years ago that we first started to recognise changes in my nan, firstly her memory, she would ask you if you wanted a drink and make you one - then 5 mins later ask the same thing again. She has gotten worse over the years and has only had my gramps to look after her. He doesnt allow her to cook, clean or do anything. She gets up in the morning and puts on the same clothes shes had on for weeks. My mum last visited them in October 2004 and was surprised when she arrived there to find my nan in smelly dirty clothes and their apartment was dirty. My gramps has been in charge of daily cleaning and cooking etc but had been going out to eat twice a day because he couldnt be bothered to cook anymore. He has also been drinking heavily and been getting himself into some right states - me and mum know this is because of the stress of dealing with my nan 24/7. We have pleaded with him now for years to come back to England where we can help him with Nan - but he wouldnt come back - what could we do?
My gramps was due to come over to England with Nan for Christmas at my mums house - that took some persuation! When they didnt get off the plane at Manchester my mum rang me and asked me to ring them in Spain. I rang their home and my nan answered the phone! I told her who I was and asked to speak to gramps - there was no point askin her why she hadnt got on the plane cos she wouldnt have known she was coming anyway! She sounded really funny in her voice and didnt know who I was? I heard her call my gramps who came to the phone sounding strange aswell. I asked him why he hadnt come over to England and he just said he didnt feel too well and would see us next year. I immediately phoned my mum and told her something was wrong - my mum and uncle flew out to Spain the next morning.
When they got to my nan and gramps apartment they were met by my nan at the door who looked like a frightened child all hunchbacked and in her pj's, she didnt know who they were but was pleased to see someone as she was frantic for them to come in and have a look at her husband cos she thought he was dead!My mum found my gramps on the couch asleep and intoxicated. The apartment smelled of urine and there was no food in either. It was clear something had happened, as they were both in a state. When they got my gramps to the doctors, he confirmed what we thought - my gramps had suffered a stroke. Probably brought on by coping with nan, as his temper was short and he always shouted at her whenever she forgot things. 6 yrs of shouting would give anyone a stroke.
My mum told the doctor about how they had been living and pleaded with him to advise my gramps to come home to England - as none of us have ever been able to convince him he needed help. The doctor told my gramps he could no longer look after himself or my nan and urged him to return to England to family that can help him and give him a break from nan.
They are now at my mums house and its been 2 days since mum brought them over. We've told nan that she's on holiday - which seemed to work for a bit, but she doesnt know who we all are sometimes and the sudden change in enviroment has had an effect. Yesterday she thought that my mum was a cleaner and that shes in a hotel and I was a guest there. Today, she thinks its her house and has been shouting at my sister askin her what is she doing getting things out of a drawer without asking permission. She has shouted at me tonite saying that the things in her house will be gone and my gramps doesnt care, then she had an attack of paranoia and was looking at me and my mum saying 'You better not be talking about me, I know you know...yes you think I dont know...but I know...I know it all!' She then started shouting at gramps saying she wanted to go home....now!
She constantly fiddles in her bag, wraps things in tissue and puts them in her bag and rips up bits of tissue and hides them in places.
My mum is in despair as nans a lot worse since shes been in England....but we had to have them come back home, if we hadnt - god knows what would have happened to them both!
Even though she does all of the above, there are times when she is fine and will sit and chat happily, she doesnt always know who you are, but shes like the old nan ive always loved, singing and chatting and laughing.
Its because of this that me and mum are in turmoil, even though shes bad most of the time, the thought of putting her into a home when there is still a bit of the old nan left, is heartbreaking.
My mum is separated and there is my brother(27) and sister(16) living at home who both work full-time. My mum works part-time and needs the money she makes to keep the house, so there is no way she can give up work. I am married with 2 children in primary school - I can be there somedays, but I have a job too.

When is the time to have nan put into the hands of proffesionals who can care for her, we are scared that if we did it now she would hate us - as she sometimes knows who we are, would she go 100 times worse and totally forget us by moving her into a home? Are we being cruel, fobbing her off cos we cant all put the time in thats needed to look after her?

Any words of hope would be much appreciated, thank you x

 

[Karyn]

I must also add.......

My nan has never been diagnosed with Alzheimers. This is due to the fact that my gramps has always passed it of as her being forgetful and never mentioned it to their Spanish doctor on visits. Ive always thought it was Alzheimers, but, when you only see your grandparents twice a year when you can afford to take time off work etc - its very hard to know for sure. Also, my gramps hasnt been saying much - he has only just admitted to us that shes been violent towards him and thrown things at him over the past months.
Whilst mum was in Spain getting things ready and packed for their journey home to England, which took nearly 3 weeks in total - as gramps was too poorley to fly - we were on the phone to eachother every day.
My mum had some problems with my nan, on quite a few occasions my nan didnt know who my gramps was. One night when mum was walking her to her bedroom, nan looked in the room and asked who was in her bed? Mum told her it was her husband and nan shook her head and said she wasnt getting in bed with him cos she didnt know him......5 mins later after mum had disracted her from the situation, she went to bed no problem?
Her short term memory lasts for less than a minute and her long term memory is becoming hazey now. Would any medication that is offered to Alzheimer pacients be of any use to her now?

Thanks again

Karyn x

 

[Brucie]

Hello Karyn

Heavens, how awful for everybody.

Although your situations have been compounded by the issue of their living abroad, what you say of Nan since she is over here is very familiar.

Not knowing where she is, wanting to go 'home'. All classic, and probably in no way because she is now over here. She probably felt the same about their place in Spain. That is normal for someone with Alzheimer's.

Collecting tissue, hiding things away - classic things.

Not recognising family members - this is the norm, I'm afraid.

Will medications help? Maybe yes, maybe no. The only way to find out is to get a definite diagnosis and arrange for an assessment, where the obvious things will be tried out. Best to do this as soon as possible.

It won't be easy for you all, for the next - goodness know how long. Take things slowly, day by day.

First thing to understand is that you have done the right thing. Nan and Gramps are now safer, and they can start to be cared for, however that needs to be done.

Do use Talking Point to air your worries, experiences and to let off steam! If your Mum feels like it, suggest she also joins in herself; otherwise you can serve as the person to talk to us.

Oh, and Gramps sounds as if he needs just about as much diagnosis/assessment/help as Nan. Having your wife go down with Alzheimer's can completely destroy someone. I tried the alcohol [and cigarette] route when I was caring for my wife at home , but the darned things just made me sick as a dog. Caring for someone with Alzheimer's all on your own can mean you have to concentrate on them to the exclusion of personal hygiene, eating, etc. That's when you need help!!!

Best wishes for the time to come.

 

[Karyn]

Thank you so much Bruce for your reply. Ive hardley slept a wink all night - even though I was reading on here till 4am!!!

Ive just rang mum, shes had a bad night, Nan has been up and down all through the night. My mum is sleeping on the settee at the moment as Nan and Gramps have her double bed - so shes had no sleep cos Nan keeps coming downstairs in the night and wandering around.
Mum is going to work this morning, its just a part-time cleaning job that she does for a disabled couple who live nearby - she has become very friendly with them over the years. They wouldnt mind if she asked for time off, they havent seen her for the past month whilst she has been in Spain anyway. Ive persuaded Mum to go and have a few hours with them to get away from nan for a while - talking to them will help.
So, Im on duty this morning, Im going round to mums at 10am and I can stay until 3.30pm - then I'll have to get the kids from school. Ive decided to do some cooking with nan today - she always loved to cook, and when I cared for her the other day, I found that giving her a cook book to look at kept her occupied for a while. She enjoys little jobs like washing up, she may wash the same things over and over again, but I think it gives her a bit of comfort to do it - I dunno, she seems happy enough anyway?

I better get round to mums now as its 9.30am - I will probably have more questions for you after todays encounter with nan!

Thanks for listening

Karyn x

 

[Brucie]

Hi Karyn

well done! A note of caution though....

You will probably note some behavioural patterns that you won't have seen before - check on Talking Point for references to 'sundowning'. Also, you may meet aggression if Nan decides she has had enough of entertaining you and she wants to go out.

You will need to learn to lie easily, and to divert her attention [to anything at all], to hold back the urge to shout, or correct, or scream. You will need to understand that what Nan has liked to eat or drink in the past may not be what she likes now. She may like sugar where she did not take it in the past, etc.

Most of all [and you are probably there already], you have to accept that Nan is still Nan, but that Alzheimer's is sometimes hiding her as she always was. She IS in there. Do talk to her as you always did - don't shout, or treat her like an idiot [even doctors do that!]. Do stroke her hair or arm as they generally like contact.

Finally, don't let it get you down; make space for yourself. Also, make sure Mum is okay as well.

Phew. It sounds like a lot, and it is. But one can get used to it.

 

[Chesca]

Lawks Karyn, what a terrible time you're all having.

Hold fast to everything Bruce has said. Your Nan is urgently in need of a consultation with a specialist and some back up help is needed as soon as this can be arranged. Once this is in place then perhaps you as a family can get together to discuss the future. Nobody can think clearly with so much going on.

Grandad is going to need a lot of TLC; he must have been struggling and at the end of his tether. AD is so punishing to everybody involved. I've certainly hit the bottle in the past in an effort to block out the strain and pain of seeing my Mum suffering. However it served only to give me a bigger pain and too much of a fuzzy head to carry out my duty to her. It passed, although I still need a slug of scotch as soon as I get back from the nursing home where she is now at some peace.

You as a family have the love and commitment to get you through this, even if it doesn't seem so at the moment. You just need the professionals in urgently.

Look after yourselves and don't forget to come here when you need to. Nice to have your company.

Best wishes
Chesca

 

[Karyn]

Hello again
Well today went pretty well apart from 1 outburst which lasted for around and hour and a half.
I took nan to the shops this morning, then to the bakery and bought us a cake for after dinner. When we got back to my mums, we had dinner and everything was fine UNTIL....nan decided that one of my mums 2 dogs was ill. She started muttering to herself and so I asked her what was the matter, she said that 1 of the dogs was ill and it was very serious. I came over to look at the dog with her and assured her that the dog was fine and was just asleep, she told me it was more serious than that and that and then decided the dog was dying. I tried to re-assure her and lied to her, telling her that the dogs had to see the doctor tomorrow and so if anything was wrong we would be able to sort it out then. She snapped at me saying it would be too late then and that I didnt know what she knew, I decided it was best to say nothing at all, and she went upstairs. Gramps was upstairs, so after 10 mins or so, I thought it best to go and check on them. When I went upstairs nan was at the top of the stairs and told me she was looking for her husband, then rushed into the bedroom and close the door. I waited on the landing and heard her saying to gramps that there were people downstairs that were not to be trusted and she didnt like it at all.
I went back downstairs and waited for signs of movement. I heard her then talking on the stairs, so I went to the foot of the stairs and found her sat 1/2 way up the stairs with mums other dog - holding it closely to her by its collar. She told me she was taking the dog upstairs to see papa, my gramps hates dogs and so I told her that I didnt think the dog was allowed to go upstairs. She immediately turned on me and shouted at me saying, 'Who said my dog isnt allowed upstairs! Its not up to you, this is my house and I live upstairs and I can do what I like!' I was a bit taken aback and the dog was wriggling tring to get free from her clutch, so I suggested that it may want to go outside for a wee, she then told me it was her job to take it out for a wee and it couldnt be trusted to go out as it would run away. I then suggested that she let it out as it may wee upstairs and that wouldnt be nice to clean up, she snapped at me again and said, 'So What!, its my dog and I will do what I want its none of your business' I nodded and told her, okay then, I was just trying to help, she then shouted ,'I dont need help, especially not YOUR help anyway!!!' This was a little upsetting and I decided to go back into the living room and leave her for a while. About 20 mins later when the dog had wriggled free and was outside in the garden, she came back into the kitchen - I asked her if she would like a cuppa, and then she was fine again??

I found this very scary, and my heart was pounding throughout and I felt hot and sick......I know that these episodes will become more frequent now. Nan has been like this whilst in Spain when mum was there, but my mum said that they didnt last very long only 10 mins or so. The past 2 days episodes have lasted 1 and 1/2 to 2 hours in total, before she snaps out of it and acts like nan again?

Ive noticed though, that she never says my name, she is nan in her ways and pleasant and nice, but I know that she thinks Im just a young lady looking after her and she's polite to me.

How long will it be before she is having these episodes all day - if they have gotten so bad after just 3 days now???

Karyn x

 

[thompsonsom]

Hi Karyn

Welcome to TP!

Is it possible for your mum to get her GP to see your nan as sounds like she may need prescribing something to help calm her down a bit if the aggressions getting more and lasting longer. We had this problem with my mum in law when she 1st came to live with us, the first thing the mental health consultand prescribed was some anti depressants, these helped to calm her down and reduce some of the anxiety she was suffering by not knowing who everyone was and why she couldnt go home, not to her flat where she had lived for more than 10 years, the home she was pining for was with her mum and dad in london who had been dead some 30 years. She had spent many happy times at our house and played games with her grandson every sunday but when she moved in with us, he was a stranger who was out to steal her handbag and even now some 10 months later she will still not leave anything in the near vicinity of him as she has it in her head that he will steal it. Since February she is now prescribed Quetapine which has been a godsend in reducing the violence to a more acceptable level. Whilst we do not wish her to be drugged up we will accept whatever drugs are on offer which help to maintain a reasonable standard of life for us all and keeps her out of a nursing home. Since september she has now gone onto aricept and we have seen a welcome improvement in her memory, she remembers events from a couple of days ago and is a lot more happier in herself. The wheels of the NHS move very slowly and you need to get on the ball as quickly as possible in order for you all to establish a better life.

Good luck

janice

 

[Brucie]

Hi Karyn

Phew, some day, huh?

I found it helpful when in your situation to turn things on their head, and to try and see the world through the patient's eyes - then to act accordingly. Yes, it will be bizarre, but it may help.

Imagine Nan's perceptions.

Family are coming and going in her mind, according to the day, the week or the month. Sometimes you will be there, sometimes you will be vaguely recognisable as someone she knows, sometimes you will be strangers who are causing her trouble.

Nan will feel that her life and her possessions have been stolen from her by....someone, she won't know who, but the next person she sees may be the one. They [you] will get the blame anyhow. Nan is trying to show she can still comprehend things [even if she gets them wrong], that she can still control her life [even if she has to grab the nearest dog to do that].

If you try and stop her doing something then you must be the one ruining her life, so she will want to do exactly what you feel she shouldn't. [there will be great similarities to young children's behaviours as time goes by]

Expand your lying horizons to the extent you need to. At first it won't feel good, but you will see that it may help. So next time there is a concern about the dog, say the vet has examined him/her, and has given some pills to make them sleep to get better. That may work. I'd suggest not saying something will happen in the future, because for Nan, there is only the now.

I know it is hurtful when they don't say your name, so help Nan a bit. Whenever you see her [even if this is every two minutes], tell her "Hello Nan, it's your Karyn again, would you like to.... [or whatever]". It may be that your name will one time strike a chord. Or it may not, but in any case it does no harm to prompt her.

You may find that Nan has taken against 'Karyn' but that she is fine with you [later, maybe]. Be prepared to talk about Karyn as another person. You will get used to a split personality! Sometimes I find it helpful to say to my wife "Ah that Bruce, he can't do anything, can he?". Jan tends to agree, and I rather mean it anyway!

The nature of Alzheimer's is that, in my experience, these episodes don't simply happen more frequently in time over the years, to the point there is 24 hours of it. Dementia can be like the sea, with tides of awareness sweeping in - and out - every so often. I see myself as a beachcomber, awaiting the next incoming tide to see what flotsam and jetsam of consciousness will be washed up in Jan.

Perversely, over time, you may find yourself looking back and thinking "I wish Nan was still able to have those episodes". Hopefully not.

Because Alzheimer's has taken so much from Nan, why not change the roles a bit? You say Nan thinks you are a young girl looking after her. Try giving her some [imagined] life back. When you see her, ask her if you can stay with her a while. Even if she says no, that doesn't mean she meant it. It is the Alzheimer's talking. So you can ignore the answer. Invite her to a cup of tea. Start conversations about the weather - it doesn't matter if she doesn't participate, she knows she could have.

There's no foretelling the speed of progression of this illness. But do get that diagnosis and assessment as soon as you can. The earlier you can get that, the earlier that medications may be able to help.

Lastly, don't ever think that Nan has really forgotten who you are, or that she doesn't love you anymore. Always remember that there is a thick wall of Alzheimer's standing between you both and that communications get frazzled. You just have to find cracks in the wall, or to hold a glass to your ear against that wall from time to time.

And when you make that link, it will all have been worthwhile.

 

[Sheila]

Hello Karyn and welcome to TP, what an absolutely awful time your all having at the moment. As usual, the members of TP are giving you good heartfelt advice, you need the proffessionals. Has your Mum spoken to her GP yet? Will your grandparents be able to go on the list? This is very important to get sorted quickly and medications started to help with things. Then you can also ask for a diagnoses or a referal to a specialist for your Nan. It is also important your Grandad is treated with the correct medications following his stroke if they were prescribed in Spain. Any sort of change will upset your Nan, so it will be tough for a while until she settles down and feels less bewildered and frightened. This is why she is playing you up, its not her fault, its the illness, hang on to that thought, it is one we say a lot on here. Once you can get a diagnoses and some medications sorted, hopefully things will calm down a bit. Also, once you have a diagnoses, your Mum may well be able to apply for some financial help. She may be able to get attendance allowance for caring for your Nan which could help quite a bit. It may also apply to your Grandad too. I am not too sure, what and how it all works but we do have factsheets and our Nada will be able to guide you to people within the society who will know how to apply I am sure. Please keep posting we all care about what you are going through as we all have walked the walk. As Norman says, day by day. Thinking of you, love She. XX

 

[Karyn]

Hello
Well, Ive been round to mums today to look after nan again whilst she went to work, unfortunately, nan was having one of her episodes when I got there. She is adamant now that my mums house is her home.....my brother had to ask her permission to sleep at home last night as she was getting angry and wanted him to leave so she could go to bed. My mum says she feels like nan is taking over the house and mum is constantly treading on eggshells so as not to upset her.
Today nan thought I was a thief in her house and she was shouting at my gramps calling him an idiot for being in the same room as me - as I was not to be trusted and was out for all I could get. She then went upstairs and came back down with toothpaste, a toothbrush and a flannel, stuffing it into her handbag and announced she was off, she wasnt staying round here to see what happens. I got really worried then, as I knew if she did try to leave the house I would have to stop her as she doesnt know her way around where we live. I paniced and rang my mum at work, she came home straight away, but nan was still adamant that something was going on and was really nasty to mum too. We left her alone in the kitchen to calm down and then after about 10 mins when we went back in and asked her did she want a cuppa, she was ok again.
I looked at some photo albums with her later on, pics of the family parties we've had and holidays we've had when nan has been there. She enjoyed looking at them, but all the pictures of my mum she looked at and then pointed at meand said, 'there you are...dont you look young!' so all afternoon she has thought im her daughter, not grandaughter. Anyway, I didnt mind - as its an improvement from earlier in the day when I was a thief!
GOOD NEWS IS! Finally, the doctors are gonna come and see her tomorrow at mums. We had been pestering the surgury since Saturday for an appointment, but they wouldnt see her as their registration hadnt gone through on the surgurys computers yet, but after todays episode - which lasted 3 hrs this time - I rang them and demanded that they send someone out to access her and prescribe the medication she needs as she was becoming a worry being so aggressive.
The doctors are coming tomorrow morning after 10.30am, so fingers crossed, I hope they can do something for her.

Thanks for listening to me anyway and for your words of comfort and advise.....hopefully we will see some light at the end of the tunnel now.

Karyn x

 

[Sheila]

Dear Karyn, thank goodness for that, once the GP has been, things should start to come together a bit. You poor loves, you must all be at the end of your tether by now. It was a good ploy to just let your Nan be for a while then just try a cuppa as though nothing had happened. This is the key, in the world where your Nan is now, she has forgotten in that length of time you see. Seeing you as her daughter, gives you a clue to where she was in that world at that moment too. It's so difficult Karyn, but you get to know the easiest and safest ways of calming. Of course sometimes they work better than others. If you try to think "distract, don't react" and work like that it is better than trying to reason or argue as they are not rational anyway. I do hope the meeting with the GP is productive, try to find out what help is available to you in your area, or where you can find out. Your local Alz. group, and if there is a Crossroads group and Carers Association locally. Age Concern are another one. You will find some info on this in our fact sheets and if the GP can't tell you how to contact your local Alzheimers group, I am sure Nada can find out for you in the head offices. Hang on in there, we are here for you and you will get through this. Love She. XX

 

[Karyn]

Thanks so much Sheila

To be honest, coming on here and speaking to you all has been a real god send....the hours Ive spent reading through websites and information...my head has been buzzing with it all.
Speaking personally with people who have experienced what me and mum are going through now has helped me keep it together more than any page of typed out information could have provided, and you dont know how grateful I am of that.
Before nan came back to England, I knew it was Alzheimers and I tried to prepare myself by reading up on it all, the truth is, no amount of reading prepared me for the heartbreaking episodes my family and I have been faced with over the past 5 days.
Alzheimers is a terrible terrible disease and my heart goes out to all of you dealing with this now.

Karyn xxx

 

[Sheila]

Dear Karyn, sending you and your Mum a big hug, I seem to be sending several today, so lets have a group one, hhhhhhhuuuuuuuuggggggg, - mmm thats better! Keep your pecker up, remember what Norman says, day by day, night night, love She. XX

 

[Brucie]

Hi Karyn

well done and best of luck!

The problem with reading about Alzheimer's, as you have found out, is that when you have read, you can put the page down and move on.

Life is different, and Alzheimer's is inexorable. Also, each case manifests in a different way because the person has experienced different things in their life and will see their changed circumstances, however degraded, through a kaleidoscope of their past.

Fear on the part of the carer is a major problem. How will I cope? What if they do this - or that? How can I prevent ...? What if they...? What is coming next...? etc. Slowly over time you will experience the various things and start to become adept at handling them.

Methinks it should be mandatory for all members of government and opposition who are involved with healthcare [and the rest!] to spend a couple of days looking after someone with dementia at the stage your Nan is at. They might just start to talk some sense afterwards.

 

[gemini]

Hi Karyn

I've just read your post and the replies. My heart goes out to you and your family. You are obviously all having a terrible time at the moment. There's not a lot I can add that hasn't already been said. If it's any consolation, try and remember that your current situation is only short term. Once a correct diagnosis has been made, you and your mum (who sounds like a saint by the way) will be able to make more long term plans for your grandparents future. Hopefully then you will be able to have some sort of normality back in your lives. Hang on in there.

I wish you all the best of luck.... As you say..it is a terrible disease.

Best wishes
Gemini

 

[Karyn]

Hello All
Well, its been an eventfull few days since my last post - to say the least!
Nan is getting worse by the day it seems. Over the past 4 days Ive had to deal with her barracading herself in the bedroom with the dogs, she wouldnt come out and so I had to ring mum as I was worried what she may be doing, as she now thinks we're all trying to kill her!
Another day she blasted off at mum as she wanted to know why there were clothes in the wardrobe that didnt belong to her, so she threw them all out.
She has snapped a photo frame in half that contained a picture of her and gramps - she put the 1/2 a picture with gramps on in the drawer.
The other morning she was hanging out of the bedroom window shouting that peoplewith guns were trying to shoot her and that they were hiding behind the bushes in the garden.
We had the doctor out on Wednesday - finally!. She prescribed nan some drugs to control her aggression - but they were having no effect so we upped the dosage. Even whilst on this medication she did all of the above Ive just mentioned. So on Friday afternoon(after the hanging out of the bedroom window incident) we called in the local mental health team, who came out to see her that day. My nan has no idea who any of us are, she is totally paranoid and thinks that my mum and gramps are a young man and his girlfriend who are holding her against her will(she told me this over the phone one day and asked me to ring the police for her)
The 2 people from the mental health were really good, theyve given us telephone numbers to use in emergencies, but sadly it is their opinion that she needs to be admitted to a mental health ward in our borough immediately. There are no beds available at the moment, as if there were, they said they would have taken her with them there and then. So as soon as a bed is free, my nan has to go, we are all distraught - its so very very sad.
We are just hoping that the next few days are calm, as we have been told that if she has another episode like shes been having, we have to ring them immediately and if she wont go willingly they will have to have her sectioned and the police will take her away.
I feel quite sick at the thought of it all and mum wont face the reality of it either - shes under the impression that they will give her some tablets and send her home! Ive had to explain to mum that this just wont happen - if she is facing being sectioned, there is nothing we can do and she certainly wont be coming home being as bad as she is.
My gramps doesnt understand why shes got Alzheimers and cant come to terms with the fact that he will soon be without her, I feel so cruel to be the one teling them the cold hard facts - but I have to, as its too distressing listening to them voice their hopes that she will get better and be able to come home.
Im dreading that phone call, Ive finally had a cry - after the mental health people told us what was going to happen - but just the one, as Im trying to keep it together for the meantime for mums sake.
I know when they take her away though - I will go to pieces.
Ive tried to explain to my mum, it would be selfish of us to drug her up to the eyeballs just so we can keep her at home that little bit longer - as she has no idea who we are and is getting quite dangerous at times because she is so paranoid - this is why she needs to be in the hands of proffessionals that can cope with this. If she truely believes that we are out to kill her, she will defend herself any way she can and I dont want anything terrible like that to happen - I dread to think of the consequences.

My poor nan, such a lovely gentle and kind lady who has never shown one bit of malice towards anyone all her life!
Its so unfair, just so unfair!!!

Thanks for your support through this everyone xxxxx

 

[Chesca]

Dear Karyn

Of course it's unfair, we all think the same. Your lovely Nan is still in there but AD is just providing its own ugly angry mask. It's a torture for everybody.

'They' are 'not taking her away' . 'They' are taking Nan into care to stabilise her - a side issue being to make life a little calmer for everybody so that you can regroup and catch your collective breath. Turn it around - it's not cruel, it's a kindness. Gran is ill, if she had a phyiscal illness what would you do? Hold that thought. She's ill, bless her, and needs medical and nursing support. It's a mental illness and because of her old age there seems to be some stigma attached to giving her a place of safety? Nursing homes are not what they used to be, you know. Of course they're not perfect but the good ones strive for the best levels of care. They are not prisons, you can take Gran out for days, weekends or whenever the hell you like. Whatever, you can find some time to look at the situation as a family with some degree of rationality, rather than all running around like headless chickens. Your poor Mum and Grandad are having the most awful struggles of guilt, thinking they should be looking after Nan on their own - none of us can single handedly. Your Mum must be having her own silent struggle, too, however that manifests itself as denial. Be gentle together.

You don't have to sanction a MHA section, you can oppose it based on the fact that you don't believe everything has been done to negate the act and then prove it. In our case, the hospital wherein she was being assessed sought to Section my lovely Mum because they couldn't get her to take her drugs! I was always against the idea of sectioning Mum and could prove that we could make her take her drugs - the actual fact being that a Section under the MHA was being sought not in the best interests of Mum but in order to protect the Staff! However, that was hospital, the Care home system of my experience is a lot kinder and far more answerable to us. We have learned to share Mum's care with them, not easy to let go, but she's only 10 minutes away and we do manage.

If you need advice concerning a MHA Section contact the Alzheimer's Society Helpline, who are very helpful and sympathetic. I did, and it gave me an informed voice.

Whatever final decisions are taken, try not to make judgements - in our family we call it 'no pointing of the finger'. Collective decisions are made, however sad, and when one falters another props them up and the opposite applies - the worst swings and roundabouts but we do it together...........somehow. About loving really, as you all do.

From my experience, which you echo in your post, the situation will become more benign - never as you want, but damage limitation is not always the worst option.

Take care and stick together - you all want the best for Nan, don't forget. All of you.

I wish you so many good wishes
Chesca

 

[Brucie]

Just an echo from me - if/when they have a bed available for Nan, that does not mean you are losing her forever. They will take her and observe her, try different tests, try different medications. Then, when they have stabilised her on something, you may be able to take her home. Until all that has happened, you can't be sure of timing, or eventual outcome.

So 'day by day' applies, as ever.

When Jan was at her worst at home, throwing knives, ranting, attacking, etc. I rang the GP one day, at the end of my tether, to ask if we could section her. He strongly advised against that, except as an absolute last course of action, because it is so very upsetting, when it happens. He came talked and we changed the medication a bit. Jan had in any case subsided by the time he arrived. Absolutely shattering for me of course, and I was exhausted, physically and emotionally. But we had made it through another day.

 

[Sheila]

Dear Karyn, just wanted to say that I think Chesca and Brucie are right in what they say. If your Nan does have to go to hospital, which sadly does begin to look that way, your Nan will be taken to an assessment ward. There they will stabilise her and seek medication to control her agression. Once this is done and your Nan is more settled, then yes, there is as Brucie says, a possiblity of her coming home. On the other hand, if she is still quite a handful, it may be best for all of you if you agree to her entering a home specially catering for dementia patients. Then you could all go to see her whenever you wanted, have special quality time with her rather than the nightmares of now. I am so glad the mental health team is now involved, don't worry too much about the sectioning stuff, it may well be that they can pass themselves off to your Nan as rescuers if it comes to it and she will go happily with them. They usually try to avoid it if they can, paperwork etc. But if it comes to it, well, like Chesca says, you can contest it if you felt the need. Love to you all, She. XX