I have failed

[Ellayne]

Hello everyone

I am not doing well in trying to cope with my mum. I am finding it hard to see what is the dementia and what is mum just being her usual spiteful self.

She has always been very critical and for years said dreadfully hurtful things to me and my children but now with this illness the verbal cruelty is much worse and seems even more calculated.

I find myself getting more and more upset and end up thinking I never want to see her again. This doesn't last as I feel so guilty and so sorry for her but I can't seem to do the right thing.

At about 1pm on Christmas Day she insisted on going back to her own home, two hours away and could not be persuaded out of this. I ended up taking her and all the food, my children,the dogs etc to her place and had Christmas there. I can't make out whether this behaviour is more of the usual way she goes on that is making life as difficult as possible and claiming that she is a victim and how horrible her family are or whether it is because of the illness.

My siblings have not contacted mum at all and my sister texted me to tell me to sort Christmas out, they had plans. I always have mum anyway as they all don't want her. I am doing my best but I just feel so bad as I don't seem able to do the right thing by her. She doesn't seem to know what she wants and whatever I do it is the wrong thing. But this is not new.

Trouble is it is not just this year after diagnosis with Alzheimers...it is every day, every year as far back as I can remember, mum has ruined everything. I have been trying to make her happy for so long and nothing helps. Now she has this illness and it is all so much worse.

Now mum is in her own home alone again and I am two hours away. She won't accept a carer and insists to everyone she is ok but then complains to her friends and neighbours that noone is looking after her....I just don't know what to do.
Ellayne

 

[Brucie]

Hi Ellayne

I'm really sorry Christmas has been such a trial for you all.

First thing to appreciate is that there is no winning with dementia; failure is the norm. The key issue is how we manage the inevitable failure.

Don't forget that dementia is only diagnosed when it gets to a point where the doctors feel able, by observation and by advanced symptoms, to say that is what they believe it is. The dementia can be there for many years before, and can appear simply to be a person being difficult.

We lived with dementia for 8 years before the doctors finally agreed with what I had realised for at least 4 years before.

Sounds like you had a nasty appearance of sundowning on Christmas Day and you probably did the only thing that was practical, upping sticks and decamping to her home.

While there is someone who has the sense of responsibility and sheer guts to look after someone who has dementia, it is often the case that other family will just leave them to get on with it, and they eventually only crawl out of the woodwork when a Will is in prospect.

If there has been a diagnosis of dementia, there must be a group of medical/social workers who have responsibility for your Mum, and it would be a good idea to locate and contact them.

At a distance, and with a family of your own to consider, it is highly unfair you should have the lion's share of worry.

 

[Grannie G]

Hello Ellayne

It is difficult enough to care for a dementia sufferer who you have had a good relationship with, but caring for someone with whom you have not had such a close relationship with is asking a lot.

You have not failed. Please do not think that way. It sounds to me as if you are running yourself ragged trying to please your mother.

A nurse who was caring for my mother said many people with dementia never lose their basic personality, and the dementia enhances it. It sounds true of your mother as it was of mine.

All I can say to you is do what you can for your mother, but not at the expense of your children.

Seek the advice of Social Services, Help the Aged, the Alzheimer`s Society Helpline, the Princess Royal Trust for Carers. Try to find out if you have an Admiral Nurse in your area, they are there for carers and will visit and give you hands on advice.

Admiral Nursing Direct 0845 257 9406
Tuesday 10-4 6-9
Thursday 6-9
Email fordementia.org.uk


The Princess Royal Trust for Carers
Unit 14, Bourne Court
Southend Road
Woodford Green
Essex
IG8 8HD
Tel: 0844 800 4361
Fax: 0844 800 4362
Email: info@carers.org

And keep posting on Talking Point. There is support here for you.

 

[BeckyJan]

Hello. I am just here to add my support. Brucie and Sylvia have given the right advice. Please take note of them and keep posting if you have more things to discuss or rant about.

Take care. Love Jan

 

[daughter]

You haven't failed

Hello Ellayne,

This is just to let you know you're not alone in thinking this. My Mum lives with my sister so she is the one who gets most of the stress, but I do have some inkling about what this is like.

This morning I have been crying on the telephone to my daughter over my guilt. I did not take my Mum with me to a family event just before Christmas and she made me feel really bad about it on Christmas Day, pointing her finger at me and making accusing noises. It's like I'm not allowed a life of my own (what little there is of it!) Then I start to think maybe I should have taken her.. how selfish of me to want some time without her.. why on earth DIDN'T I take her.. how mean am I? Enter the guilt monster.

My Mum had a stroke this time last year and even though she finds speech difficult, she can still make herself understood. Also, unlike Dad, Mum remembers things very well, mostly the bad bits! Logically I know she is ill, probably with dementia, and can't help it but it doesn't stop me from feeling bad when she's being difficult. I just can't understand why she seems to be like this with just me and my sister, the two people in her life who are doing their best to try making her life as good as it can be!

My Mum has always been the one who has to be cheered up. Luckily, most of the time before he got Alzheimers, Dad was great at making Mum happy and I've tried to follow his example but succeed less and less nowadays. There were a few years while Dad was in the Care Home when, she put on a brave front for Dad. We became close over those years and I am very grateful to have had that with her, but that has all gone again since her stroke.

The really screwy thing about dementia, (or after the stroke, or is it just her personality?!) is that today, when I'm taking her to another family event, she could be as nice as pie and apologetic in her manner. That makes the guilt worse!

This isn't much help to you I'm afraid, but when I read your post I wanted to tell you that you haven't failed, you're doing the best you can do in extremely difficult circumstances, and that made me feel a little better about myself, so I hope in return this may do the same for you. I do hope you get some outside help. My Mum really enjoys going to her Day Centre three times a week, perhaps you can find a good one in her area.

Best wishes,

 

[citybythesea]

try not to feel guilty....yeah right!

Sylvia and Bruce have given you the best advice possible...now I want to go one step further. Take care of yourself and while I was a carer in my home til mom died, I don't recommend it to most people....I do however recommend you and your siblings taking the bull by the horns now! If your mom has already been assessed I suggest getting all the help possible...now. This is going to be an undaunting task but a the faster you get things in place the better YOU will be off mentally. I think that maybe your siblings and you should think of going ahead and finding her a home that is qualified to take care of her. If she has a power of attorney for someone inact it. That person needs to set a foot down to her. She will be bitter she will storm all over the place....but I think that deep down this may be what she wants. (from her comments to friends). I apologize if what I am saying seems harsh but you have to realize that this disease is already controlling her and you cannot control it....you have to get a handle on it for YOURSELF. Placating her will not solve the problem it will only make you feel worse...and once you know she is having the care she needs you will feel better.


NAncy

 

[Margarita]

At about 1pm on Christmas Day she insisted on going back to her own home, two hours away and could not be persuaded out of this.

Sounds like something my mother use to do. I organised a birthday meal for my mother at a restaurant , this was about 3 years into my mother dementia , when we got there the meal did take long to come , that half into our meal mum wanted to go home ,None of us could persuaded mum to stay , So I took her home & my brother stay with her. I went back to the restaurant

I find that may be its to do that some people with dementia , can’t take the stress of being in a different environment with groups of people . It’s only got better, because mum can only take being in a family environment at home with me, as long as she can sleep when she like. at day cenetre, they understand her moods, mum learn over the year that she safe there .

She doesn't seem to know what she wants and whatever I do it is the wrong thing. But this is not new.

I know what you mean , my mother was also like that and your find that the symptoms of dementia just highlight it more.

I have been trying to make her happy for so long and nothing helps. Now she has this illness and it is all so much worse.

You can't make someone Happy even without a Dementia if they don't feel happy in there present moment in time , only live in yesterdays . What I learn along this journey is that all you can do is support them .

As this disease has progressed, my mother moved into only knowing what happen in her present moment of time . yesterday tomorrow has gone, all my mother know is what happening in fount of her.

If I don't prompt a memory she won't remember anything only if she has a dream. Seem all her bitterness, frustration has gone of her yesterdays past history , because I can tell you my mother was also very critical of me.

No wonder they called a book "contentment with dementia " I have never seen my mother so contented in all her life. The only thing that rock it is respite care home

She won't accept a carer and insists to everyone she is ok

If hard when they get to that stage in not excepting help, all you can do is keep visiting, only if your mother putting herself in danger as in wondering the streets , leaving gas cooker on , is your mother at that stage ?

Don't ever feel you have failed; because this brain damage is to powerful to ever winning it. Just learn ways around it, in how to live with it

 

[Margaret W]

I feel like a useless wet lettuce, I haven't experienced any of this. Stupid remark, but do what you can and be proud of doing so.

Love

Magaret

 

[Sandye]

Ellayne, you have not failed...you have done what you can do at the moment, and that is all that can be asked of anyone. What you need to do now, since you are not living all that close to your Mom, is to find help within your Mom's community to take care of her.

With your Mom's dementia, you are not going to be able to make her happy...all you can wish for is to make sure she is cared for properly.

I felt that I had failed, too, a week ago when my husband had to go to a geriatric psych. assessment ward for two weeks to sort out his medication. I do feel sorry for him, because he's not a happy camper. However, the fact remains that I could not keep him at home because of his aggression and verbal abuse. The fact also remains that I will not be able to keep him at home unless they can work some kind of miracle with different medications. If they can get him calmed down a bit, I will be getting some help here at home to take care of him, or he will have to go into a nursing home.

Anyway, my point is...do not feel that you have failed. You are doing all you can do right now for your mother.

 

[hazytron]

Hello Ellayne
You have been given lots of very sound advice already and I do not feel that I can add to any that has already been said.
However do not feel alone, reading your thread and subsequent replies has helped me during troubled moments of my own.
She has always been very critical and for years said dreadfully hurtful things to me and my children but now with this illness the verbal cruelty is much worse and seems even more calculated.
How very much I can identify with your situation.
Last week my brother and his wife planned to visit my Mum, they live three hours away, Mum lives across the road from me, all week Mum tormented me to death in saying that she had no intention of letting him into her house. She hates the fact that he rarely visits. I was on pins all week wondering what would happen. When the time came she welcomed them with open arms, we all went out for a meal and had a really lovely time together.
As soon as they left she sobbed her heart out and became abusive towards me and said she could no longer live alone and be so lonely.
That night I took her to a carol service which she enjoyed and on her return home she started with her abuse towards me again with a look of absolute hatred of me in her eyes.
I left at that point as it seemed the sensible thing to do. After this incident I received frequent calls from her to say that she would not be joining myself and my partner and my younger son for Christmas Day as she did not feel wanted.
This threat was carried out and she did not come to us and instead she spent the day in bed telling everyone who phoned that she was home alone and hadn't seen a soul.
Today I had planned to have a festive lunch at a local hotel, which Mum was refusing to attend,with both my sons, my partner and his young adult children and a friend of Mums who
also was invited.
Enentually she was persuaded to join us and again had a lovely time, we all did, I had a migraine half way through the meal but it passed and I was ok later on. I am sure it was caused by the stress beforehand.
On our return Mum came back to my house for a cup of tea and then left to go back to her own house complaining of the awfulness of going back to an empty house.
I have been over to see her this evening and she was looking really poorly. This often happens but she refused to call a doctor, my partner came over to fix her television and before long she was chatting away to him and smiling happily. No sign of being poorly. We left and she began to cry again at being left.
Well tomorrow is another day and I will see what that brings but I can predict a roughish ride along the way.Putting this all down in print has soothed my troubled mind so goodnight and I hope sleep will come to us all.
Hazel

 

[Ellayne]

So much gratitude

Hello everyone

I just feel so much gratitude to you all for your replies..

Re whether there is a team in place to help her. I don't know. Mum had the diagnosis a few weeks ago as the result of a scan and memory tests etc. That was when we went to the memory clinic and they said no medication as she wasn't ill enough. Then they said maybe but we had to wait till after Christmas as no time to visit her and get it organised.

When I suggested a carer to do things for her in her house mum flatly refused and said she was fine. She is very suspicious of having anyone in the house and I can't make her do what she doesn't want. I guess I am having to wait therefore until she gets into a real state before she will accept help or can SS make a person have help? No, I suppose they will assess her and decide. That means she won't get help cos she will be ok and give a good impression cos she always does somehow to manage it before strangers. Then of course it makes me look as if I am making it up...and trying to get her into a home. That is what she says to everyone. Maybe that doesn't matter as I know I am doing my best. But I have to make myself believe that.

Trouble is for me that she makes me so unhappy that I want to stay away from her but I can't and she won't pick up the phone so I then have to go and make sure she is ok. It is a game she has played for years. I have started asking her neighbours if she is ok so that I know even if she doesn't pick up her phone to me. They don't see the nasty side of her so I am thinking they probably think I am horrible leaving my mum there on Christmas day evening. But what could I do? She has the right to do what she wants, doesn't she? Even if she is ill...

Mum has such an ugly way of being with me...she is lovely to outsiders but says horrible things about me and also to my face. She tells lies but she knows they are lies cos she will say so afterwards and say it was a joke. I shouldn't be surprised or hurt at that cos she has always done that. She doesn't recognise my love and concern it's almost like she doesn't have emotion or attachment of any kind. I think I am trying to make her into a nice mother for me, that is the problem, isn't it, as well as trying to help her with her life and this illness. She is never going to love me the way I want her to and now even less with the illness and not being able to change.

I am going to try contact the Carers group and Admiral nurse for help myself with my grief and loss. Maybe if I can do that then I am better help mum as well.
Thank you for all the help and support, it does help to read and also know I am not alone in this as so many of you have been there.

Ellayne

 

[Ellayne]

So much gratitude

Hello everyone

sorry i posted twice by accident
Ellayne

 

[Christinec]

Hi Ellanye,
Just to say you are not alone and my heart goes out to you.

Trouble is it is not just this year after diagnosis with Alzheimers...it is every day, every year as far back as I can remember, mum has ruined everything. I have been trying to make her happy for so long and nothing helps. Now she has this illness and it is all so much worse.

Same here except I have been trying to do it for both parents - make them happy that is. Sort of given up now as I think I just ran out of compassion and mental energy. Guilt horrible but i cannot do anything else. Counselling from the local Alzheimers Group has really helped me to come to terms with some of this and I have found them fantastic

Over the last 40 years my Mum has been a sad, anxious and sometimes mean woman who at times had treatment for mental health issues. 6 years ago she was official diagnosis of Alzheimers.

In my opinion carers in once or twice a day would have been useless for someone as ill as my Mum and living alone. What happens in the other 23 hours?

If you live 2 hours drive away and have other commitments long term care by you is not feasible.
Unless you want to give your Mum full time care (I knew I would never have either parent living with me) I would agree that the sooner your Mum is in a care home or has a substantial at home care package(non-existant in our area) the less mental anquish you will have to go through. Watching anyone sink in to demantia is bad enough without making it harder for yourself. Whatever you arrange it will not be perfect - good advice given to me by Mum's CPN - but you just might have a few less worries.

My situation was very complicated because of others involved but I feel now that Mum is as well cared for in the residential Home and as happy as she was at home and after many years of worry that is some relief. She is also nicer to me than she has ever been before. I think she has sort of lost the ability to be nasty.

In the end she was sectioned. Not as bad as it sounds and it meant she was able to have the help she was too ill to understand that she needed and which others were witholding from her.

I have to say that I think you need to make it clear to GP, SW, CPN and anyone else involved how much or little you can realistically do to help. Sometimes this requires quite a lot of effort because the authorities do not want to hear this.

On the psychological level I too spent many years trying to get the parents I would have liked and the time comes when you have to accept that other people have good families but not everyone has this luxury and it is impossible to change other people. I have just tried to accept that is the way it is for me. I hope this does not sound harsh it is just that I think you and I have both faced some of the same problems. Alzheimers certainly damages even the most together of families never mind the ones that are damaged before the illness strikes. I hope that I have managed to be a good parent to my children and I am sure that you are doing the same for yours.

I also have a useless brother although I can quite see why he chooses to leave it all to others. Easier again when you just accept they are useless.

Finally do not worry about what the neighbours think. Unless they have actually spent a long time caring for someone with this illness they have no right to judge and will have no idea
what you are dealing with.

Wishing you all the best and try to get on that phone and start the process.

 

[dora]

Trying to make your mum happy

Ellayne, I do admire you so much. You say you have spent your whole life trying to make your mum happy - you haven't given up. I have had to support several elderly relatives, with and without dementia, and the most helpful thing I ever read was, that whatever you do, it won't be enough. I found that when I was able to accept this, it made things a little easier and I hope this will help you too.
Congratulations on getting your mum investigated and getting a diagnosis. We haven't got any further than a couple of blood tests at the GP for thyroid levels etc. Mum was referred to the memory clinic, but refused to go, and kept sneaking the appointment letters out of the drawer and tearing them up.She also is denying there is anything wrong and this makes it so hard to give the help that one wants to. Dora