Help please

[Netty]

Firstly can I apologise for the fact that I only seem to come here when I need help. I do think of all of you that are living a life with dementia being a part of it, even if I am not here much.

Ok, today has been one of the toughest days yet. Today my mother decided that my sister had stolen from her. (This actually started yesterday, when she telephoned my sister and accused her outright of stealing from her). She was so upset and angry and it took me a few hours all together to calm her down. Cut a very long story short, the story kept changing and she eventually turned up at my sisters house, with her thinking they had had an argument over a doll(!)in a house that my sister moved from nearly 2 years back.

This isn't the first time something like this has happened. A few weeks back she again turned up at my sisters in an awful state as I had been nasty to her, we had argued, she had said some hurtful things etc, none of which had actually happened.

Once or twice something like this has happened in the past, but not to this extreme.

My mother lives on my premises, but has her own cottage. At best we just bumble along with it. But today I felt completely out of my depth again. I home educate my two small daughters, who (as usual) witnessed the full onslaught, and were upset and confused by the ranting and are asking questions such as "why did aunty H steal from Gramma?". They are only 5 years old and really don't understand why Gramma is behaving like this.

I really don't know what to do or even if there is anything I can do. The most upsetting thing was watching her being so upset that it was heart breaking, and nothing I could do could take that from her.

So if any of you have any pearls of wisdom, please share them with me.

Love to you all

Annette

 

[BeckyJan]

Hello Netty\;

I am certain there is a load of stuff you can learn here on TP.

At this time of night I just want to welcome you to TP and hope you get the support you need.

My first thoughts are: are you getting help from a CPN or Social Worker? Has your Mother been diagnosed and what support has been offered?

Please tell us more and you will get thoughts from others.

 

[Netty]

Hi, thanks for replying.

My mother was actually diagnosed a few years back. She was put onto Aricept, but after a year or two took herself off it as she decided it was the cause of all her problems.

She is under a specialist who sees her every 6/12 months or so, but tbh that is limited in its use simply because we cannot say anything to contradict her as she would just blow a fuse & the fall out would simply not be worth it. We have tried to speak with them separately, but just keep getting told there is nothing they can do to help if she is unwilling to let them help her iygwim?

While she was on Aricept, we had a nurse come in to see her every now and again and my mother hated this with avengence. It was almost a relief for us all when the nurse withdrew when Mam stopped taking the Aricept.

It seems that whenever we (almost) get used to her "ways", she moves the goal posts!

She was so distressed when it dawned on her that this didn't really happen and also that it has now happened twice (the other occasions we suspect something like this has happened, we weren't actually witness to - but we strongly suspect that her version of events were not right). She kept saying it was all so vivid and real. Its so cruel.

Annette

 

[PollyP.]

Dear Netty

I'm so sorry what you are having to cope with, it sounds awful and as you have said it's also so upsetting for your mum too. My mum was very difficult to handle last year, but she has been on Aricept since Nov 09 and the difference in her is just amazing (I'm praying it keeps this way!) It's such a pity that you can't encourage your Mum to go back on the Aricept (did you notice any difference in her when she was taking them?) I call them "Mum's crossword pills" as we do a lot of crosswords together and she is so good at them since she's been taking the pills. Could you introduce some vitamin pills each day and then include the Aricept with them ?

Thinking of you and hoping that things get better for you all.
Love
Pauline

 

[Netty]

Medication is a long standing problem. Basically she will not let us have anything to do with it at all. When the nurses were here, they (as did we) noticed that she often forgot to take her meds and suggested that I had them and gave them to her daily.....that ended with her standing outside in the pouring rain at midnight screaming at me, which woke up my (then 2 year old) children who were also out there crying and getting soaked through. After 2 nights & days of this, we had to give them back.

Again, the advice we are given is that if she wont let us help....

Thank you for replying.

Annette xx

 

[PollyP.]

It sounds a real nightmare

I don't know if the tablets could be disguised into a nice drink, cocoa, coffee or even Guinness! I'm grasping at straws here, You said your mum lives in a cottage next to you, do you cook her meals or get her breakfast, perhaps something could be slipped into a meal? You really need some help, are you getting help with the social services? Would the Alzheimers Society have a factsheet regarding your problems?

Hopefully someone else will come on to this thread, with a better suggestion.

Love
Pauline

 

[Netty]

Thanks again Pauline. No we have no help, just the same old, same old, if she won't let us help answer. The last time she saw the consultant, he tried to suggest she came in to the day center now and again. There is no way would she even consider that.

No, again food is another long standing problem, we are not allowed to have anything to do with her food. When she first came here, she used to come over in the evenings and eat with us. I worried because as she is diabetic she should be eating throughout the day,not just in the evenings as she was. We persuaded her to have meals on wheels. She then went to eating when they turned up, but then not with us, so that was no better. And then worse still, she started stock piling them. They would be there for weeks - literally. We try to quietly throw things away when we get a chance, but she's canny and we dont often get chance. She has ended up with food poison on more than one occasion.

If I go over there too often (or at all sometimes) she gets agitated and it starts off the "I'm moving" sessions, where she disappears often without us knowing, looking for houses. I think she feels I see too much and she needs to get away in order to hide things from me/us.

She was a fiercely independent person, and I think as the condition has progressed, her reasoning ability has decreased and the independence has gone out of control. Her cottage is filthy, she is not clean and refuses to shower. I can't believe that my mother is living in conditions like this, and I am powerless to do anything about it.

I hate myself for saying this, but the only relief I can see from all this, for both her and ourselves, is when she passes away.


Annette xx

 

[sunray]

It all sounds so hard to fix. We had to move Mum and Dad in with us as she wasn't able to look after Dad who had cancer. At one stage I looked after Dad with cancer, Mum with Alzheimers and my husband who was just out of hospital after 4 1/2 months rehab from two major strokes. This was in 1999. I nearly went mad myself.

I had lined up care for them in their own home and Mum wouldn't let the carers in not even the community nurse for Dad. So having them here was the next best thing. Here I was able to say: "My house, my rules." So they had a minder for three hours a week, went to Daycare and did a lot of what I wanted. With just Dad asking her to do things this didn't happen. It was the combination of the two of us asking , coaxing and persuading that seemed to work. Mind you the nurses kissing Dad sped her onto the Daycare bus, she wasn't lettiung him go alone with those hussies!

I wonder if anyone else could talk to your Mum for you? Someone who has had a good relationship with her in the past might be able to persuade her to come in to you for dinner for instance, or to change her dress (here is a new one, would you try it on please?) to have a haircut (why don't we do this together?) etc.

Friendly persuasion might be the key. It worked with Mum.

Sue.

 

[lin1]

Hello Netty

Your in a difficult situation.

Sorry I have no real idea how you can help your mum .
I can only suggest,
You speak privately with mum's consultant, I do this over the phone.

Also if they are in your area,contact an Admiral Nurse, The Alzheimers society or age concern or mum's consultant would know.
If they are, they do come 2 you, mine was a fount of information and suggestions.

tho I found I had to be inventive and tell a few fibs as mum's disease progressed.

I disguise all mum's meds with doc's knowledge, but as I cook the meals and feed mum, it's somewhat easier for me.

 

[Netty]

Thank you one again for your replies.

Basically anything that doesn't involve leaving her to her own devices, causes her to rage. She doesn't seem to realise she is not coping, she refuses to allow us to help. She has threatened to take an overdose in the past when we have tried to intervene. It makes no difference who tries to deal with her, the result is always the same. More aggression.

When the nurses were coming here, she literally threw one of them out of the door. I think they were relieved to withdraw when she took herself off the aricept.

We have spoken at length many times with the nursing staff etc and keep getting told if she's happy it doesn't matter if she is not clean or the conditions she is living in. Leave her to it. Even as far as her medication is concerned, they know as well as we do, she doesn't take it half the time. Again, we just keep getting told that we tried to do something to address it, and it didn't work. We can't actually force her to take it.

On the whole she's normally a very mild mannered person (pre dementia, she was a lovely gentle person who barely even raised her voice) apart from when she gets a bee in her bonnet about something and will just go off on one, the best we seem to be able to manage is to keep our heads down and don't do anything that we know will rock the boat.

The trouble is, she is deteriorating and isn't by any stretch of the imagination "normal" now. But she's not bad enough for us to be able to get involved, without causing the backlash that we get.

I have no idea what the answer is.


Annette

 

[pixiemorris]

Response to Netty's "please help"

Hi Netty
First of all... please do not give your mum medication without her consent. I know it may seem like a "good" thing to do, but it is a response to the frustration of not knowing what to do and needing a solution. It will not solve the problem and is not ethical or legal! Please read up on Mental Capacity Act for more details.

There ARE great solutions! You are quite right that your mum throws another challenge up... and you are up for the challenge I can see that from your ability to cope well for all this time. This is the beauty (and the terror too!) of relationships.
Hang in there. I have some ideas for you...

First of all - purchase or get your library to purchase this book:
"Contented Dementia" by Oliver James. He describes in real and useful detail a method for YOU to use with your Mum. It was designed and used for many years by Penny Garner, whose Mum had dementia. It will bring positivity back into your Mum's life and all your lives too...

And for now... the best advice I can give is:
You can get tools and ideas (from people, books, Alzheimer's Society) and then you need to put them in to context for your individual and your mum's individual needs.

Go back to your Mum's past and your sister's past with your Mum to find out what was important to her and what the feelings and situation in the past might have been. The feelings are what remain, not the facts. We make the mistake of thinking a person with dementia's experience is current and based on current facts (like your sister did not steal).

The experience of a person with dementia is putting experience and coping strategies/memories of the past (which are intact) into a present situation... so think to yourself, right now your mum is feeling let down and betrayed and she is connecting that with your sister. Maybe she needs your sister to help her. She doesn't truly think your sister stole from her. She is confused about something and is trying desperately to find an answer and a solution.

And how can it be resolved? Think positive, think outside the box, assume your mum is right (not about the facts, about the feelings!), and respond to that. Forget about the accusation of stealing and work with the feelings.

One thing is for sure - the nature of dementia insists that we see the world in a different and much more feeling and "present" way... instead of in facts and socially acceptable ways! And that's a wonderful thing.

I know it is tough... be brave... especially when you are being presented with accusations and strange behaviour! Think, what is mum showing me? Not get caught up in whether her comments are true or not... it doesn't matter to a person with dementia, they just need to sort the issue out because it is true for them. You will never win if you tell her that she is not right...
Breathe deep, don't question, your mum will find a solution or you will find one all together Think how capable you all are and how well you are managing by wanting to find a solution.

Also - for your children, there are factsheets and booklets on how to explain things to your children on the Alzheimer's website. Here's a link: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=147&fileID=734
Children will get it, as soon as you get it! They are taking their cues from you and will absorb whatever you offer them. So I would explain it as I have done to you. Children are resilient, understanding, and intelligent.. and they will help you out on the detective hunt for the answers your mum is searching for.

Lots of wishes and smiles (and I hope this helps!)

 

[Netty]

Thank you once again. I'll call into the library

It took a long time for me to accept that we couldn't make her do anything let along insist that she took her medication. Even the district nurses realised trying to help her with this was fruitless. The problem is that she also doesn't take her diabetic meds as she should and of course her blood sugar levels are all over the place - which is something we know causes her to become muddled and aggressive. But there isn't anything I can do, even though I know that longer term, not managing her diabetes is causing more and more damage to her health - another shed load of guilt comes with that - but we are resigned to the fact that we keep well away from that side of things.

I know also you are right about the girls. Its getting slightly easier now that they are getting older, but we aren't the sort of family that has arguments full stop, so when they are witnessing her aggression they literally don't know what to do. I was trying to get them away from it yesterday and my mother kept following me and carrying on with her ranting. I have explained to them that she gets a confused and muddled sometimes etc, but my instincts are that I need to protect my children. I don't mean by hiding things from them, but literally to keep them from harm. The nurse wasn't the only one that has been thrown out of the door, the girls have been too. Very roughly. And then within minutes she has been shouting at me for keeping the girls away from her. I can't win.

I also hear what you are saying about her being ruled by her feelings. I understand this and agree. But (have been reading up on it and I'm sure she is having delusions now) its so real to her and it isn't a quick flash that is gone when she has had her say, it goes on and on and on (i mean literally for weeks) and there doesn't seem to be any way of stopping it other than sitting down with her (and for want of a better word) arguing it out with her. She will not be pacified.If we "agree" with her it only seems to add fuel to it, her aggression snowballs and often then involves more people. Only when something clicks in her head that maybe, just maybe, she "dreamt" it (this is her explanation of what happens) does it subside. Then it's a lot of upset and then eventually, as quick as it starts, it stops and its gone.

Thanks for having faith in me to cope with this, I don't feel I'm doing a terribly good job of that at the moment!

Annette xxx