Sorry but today is just getting worse please advise.....

nerak

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Jul 4, 2013
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ireland
Feel like a right pain today but things are just happenig very fast here!

I fought tooth and nail for a year to get my mum into respite so tired!

Then finally about 6mths ago she was granted respite to a really nice private home up the road she will now get one week every six weeks her first visit is on the 7th of august her first time in respite but Ive brought her up to see the place and she liked it so is very keen to go...........

Now just an hour ago the district nurse rang she asked me how things were re doc etc.. I told her that I had no choice but to go private even though we cant afford it she asked me if i thought my mum had dementia?? I said am more and more convinced but want an expert to diagnose.

She has now hit me with a bombshell that if mum has dementia she will not be going to that nice home but a horrible place down the road???

I just dont know what to do now my mum is looking forward to it BUT she hasnt been diagnosed yet and the apt is only a consultation surely they cannot refuse her if no diagnosis has been made yet!

What can I do cancel the apt and let her enjoy the respite OR go ahead with apt he cannot say in one session she has dementia without doing tests???

Also getting mam to see this doc was hard enough and shes willing to go?

Am beyond fed up with all this red tape **** anyone advice also was important for mam to stay in this home to see if she liked it as it was my choice for long term care.

What a dilema? Please advise
 

Noorza

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Jun 8, 2012
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Feel like a right pain today but things are just happenig very fast here!

I fought tooth and nail for a year to get my mum into respite so tired!

Then finally about 6mths ago she was granted respite to a really nice private home up the road she will now get one week every six weeks her first visit is on the 7th of august her first time in respite but Ive brought her up to see the place and she liked it so is very keen to go...........

Now just an hour ago the district nurse rang she asked me how things were re doc etc.. I told her that I had no choice but to go private even though we cant afford it she asked me if i thought my mum had dementia?? I said am more and more convinced but want an expert to diagnose.

She has now hit me with a bombshell that if mum has dementia she will not be going to that nice home but a horrible place down the road???

I just dont know what to do now my mum is looking forward to it BUT she hasnt been diagnosed yet and the apt is only a consultation surely they cannot refuse her if no diagnosis has been made yet!

What can I do cancel the apt and let her enjoy the respite OR go ahead with apt he cannot say in one session she has dementia without doing tests???

Also getting mam to see this doc was hard enough and shes willing to go?

Am beyond fed up with all this red tape **** anyone advice also was important for mam to stay in this home to see if she liked it as it was my choice for long term care.

What a dilema? Please advise

I think if your mum can cope in the home and they can cope with her, then you should wait for the diagnosis and let her enjoy the respite. This will also give you a break. Nothing really happens with a diagnosis, nothing much changes apart from doors opening for more support but a whole weeks respite is a lot to turn your back on. I get two hours a fortnight.
 

Butter

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Jan 19, 2012
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I think your mum should go to the nice home - and you should not worry about any diagnosis.

Diagnosis is not always good - sometimes things are better left open and undecided - and this seems to be a case in point.
 

nerak

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Jul 4, 2013
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ireland
Just not sure? my family want a pro opinion if i dont get this ill continue to get no support from them? Do you think this doctor can diagnose without a brainscan he may ask to have one done then I could make the scan apt for after respite??

Also my mums doc is main doc in this home?? he said he would keep an eye on her when there so maybe just leave it oh help.

seems a dignosis is not the be all for some on this site but i cannot get any homehelp until i get this or my family to wake up to the problem?

My mum is fine for now acts fairly normal but then does something dangerous but she will cope in respite and shes not a huge problem YET?

So tired and just drained from all this she has now become a fulltime job if im not cleaning im cooking or on the phone or online my whole life has revolved around her and her needs and its getting harder and harder AND this is going to get worse???:eek:
 

Noorza

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Jun 8, 2012
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In all honesty if your siblings gave a stuff they'd be helping with or without a diagnosis. I am admittedly very cynical but it is so often the case that siblings leave it all to one child and have lots to say from the sidelines while doing nothing.

A diagnosis probably won't get your siblings off their butts to help your mum. I am cynical though.
 

Noorza

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Jun 8, 2012
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Are your family really going to give you more than a full week's respite that you will get from the package that's in place for her.

You could get the diagnosis and they still wont get off their butts, then you lose the weeks respite. You know how serious your family are but past behaviour is indicative of future behaviour.
 

KentJude

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Jul 2, 2012
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Maidstone
You wouldn't get a diagnosis after one appointment, mum had had memory test, ct scan and blood tests before diagnosis, it took from September to December. This was nearly 8 years ago though. Maybe it's different in Ireland too.

I can understand your uncertainty and do feel for you.

Best wishes

Jude
 

Big Effort

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Jul 8, 2012
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A diagnosis isn't worth the paper it is written on.
Mum was diagnosed with Dementia Alzheimers type. She is in total denial of any problem, and the only one who cried when told was me.
At the end of the day Dementia is highly individual, so the speed at which it progresses, the issues that arise, are all dependent on several factors including personality.
I think being given a diagnosis of Alz or FLD or whatever is just a label. About as useful as being told you are a tall person. Tall in relation to what? To whom?
All it does is scares people, narrows the scope of care and care homes, so much hot air and little to back it up.
Go for the good respite place. That's my view. Hugs BE
 

Noorza

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Jun 8, 2012
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I am with the BE here. You wouldn't get a diagnosis in one visit because they have to eliminate so many other things. Water infections, chest infections, high temperatures, maybe brain scans, hearing tests, sight tests, Mum went through a massive amount of tests to eliminate physical difficulties before they would diagnose dementia. Seriously privately it could cost you thousands upon thousands of pounds.

I always say how lucky we are to have the NHS.
 

nerak

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Jul 4, 2013
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ireland
Thanks guys I think I will leave it for now if my sister wants a diagnosis then she can pay for it!

I cannot talk to her and have ignored her for quite a while now I told her that until she speaks to her own doc about dementia then I dont want to see or hear from her.

Great that im getting a weeks break my sis thinks the break is for my mum(but mum needs a break????) from what? being waited on all day while I run around like a giddy kipper??

Huge row with my sis she is coming home just when my mum is in respite???????????? she said she has the right to stay whenever she wants so my weeks break will be me in the same house but avoiding her!!

Family who needs them??
 

Noorza

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Jun 8, 2012
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Thanks guys I think I will leave it for now if my sister wants a diagnosis then she can pay for it!

I cannot talk to her and have ignored her for quite a while now I told her that until she speaks to her own doc about dementia then I dont want to see or hear from her.

Great that im getting a weeks break my sis thinks the break is for my mum(but mum needs a break????) from what? being waited on all day while I run around like a giddy kipper??

Huge row with my sis she is coming home just when my mum is in respite???????????? she said she has the right to stay whenever she wants so my weeks break will be me in the same house but avoiding her!!

Family who needs them??


Now you are talking girl. What kind of a daughter arranges a weeks visit while their Mum is in respite, when they would be more useful when Mum is at home?

Responsibility shirking anyone?
 

Noorza

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Jun 8, 2012
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I am not sure she is allowed to stay whenever she wants, I'd put a call into the Office of the Public Guardian to see where the land lies. Please call them and let us know what the answer is, we are all on a learning curve.
 

nerak

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Jul 4, 2013
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ireland
I am not sure she is allowed to stay whenever she wants, I'd put a call into the Office of the Public Guardian to see where the land lies. Please call them and let us know what the answer is, we are all on a learning curve.

Are you serious?? The one thing ive noticed in all this is that there is no protection for us against the "invisables" Oh I would love to have something legal to fling in her face!!

Now! Now! I forgot Im supposed to forgive her (according to an angel reading i had recently she said my life will not get better until I forgive my sisters!! Bloody hardest thing ive ever had to do but that dosnt mean I ever have to be in thier company again!!) You can forgive but you can never forget. Mam told them I was stressing her out then they said why not kick her out????? I found this out in a letter mum had left lying around was very hurtful but have moved on they will be sorry that they never beleived mum has this disease Im guilt free they are going to regret this when ive moved on!!:p
 

nerak

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Jul 4, 2013
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ireland
Thanks Noorza im sorry you seem to have it very tough 2hrs every 2wks break??? how is this? I just could not do this! Have you no help at all? You must be superwoman gosh I would go and help you myself but who would mind my cat???

Im ok at the moment I have a very dear friend just across teh road who gave me her keys when I need a break from mum.

I go to another friend 2 nights a week but must stay the night as no car but am not that far away if i needed to get home quick.

BUT things are getting harder and so far nothing has happened to her on her own here those nights except last wk when she left the door open for the cat all night.

My bro lives down the road when I tell mum ill call him to stay she gets VERY angry and dosnt want him bothered BUT it will get to a stage that he will have to stay whether she likes it or not.

He hates me and is happy im having a **** time as I had to get his wife out of here as she was stealing from mum??

But he will come when asked to BUT is as much help as a chocolate teapot he sees what he wants to see then off again until the next episode!!

I cant imagine how you cope alone I know I cant do this on my own I felt so guilty for too long that it was making me ill and I have to do whats right for my own health now.

Mum was in good form today sharp and with it she even had a shower??? Ive started giving her coconut oil and think its kicking in.

Mum is fairly calm and just sits in front of tv and thankgod for this heat as she cant do anything!! Its when she starts to clutter and start jobs that really freaks me out shes become a hoarder and theres clutter all over ive cleared it then cleared it until I let it go I was wasting my time now I hate living like this but have learned to turn a blind eye OR go mad!

Take care:D
 

Noorza

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Jun 8, 2012
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Thanks Noorza im sorry you seem to have it very tough 2hrs every 2wks break??? how is this? I just could not do this! Have you no help at all? You must be superwoman gosh I would go and help you myself but who would mind my cat???

Im ok at the moment I have a very dear friend just across teh road who gave me her keys when I need a break from mum.

I go to another friend 2 nights a week but must stay the night as no car but am not that far away if i needed to get home quick.

BUT things are getting harder and so far nothing has happened to her on her own here those nights except last wk when she left the door open for the cat all night.

My bro lives down the road when I tell mum ill call him to stay she gets VERY angry and dosnt want him bothered BUT it will get to a stage that he will have to stay whether she likes it or not.

He hates me and is happy im having a **** time as I had to get his wife out of here as she was stealing from mum??

But he will come when asked to BUT is as much help as a chocolate teapot he sees what he wants to see then off again until the next episode!!

I cant imagine how you cope alone I know I cant do this on my own I felt so guilty for too long that it was making me ill and I have to do whats right for my own health now.

Mum was in good form today sharp and with it she even had a shower??? Ive started giving her coconut oil and think its kicking in.

Mum is fairly calm and just sits in front of tv and thankgod for this heat as she cant do anything!! Its when she starts to clutter and start jobs that really freaks me out shes become a hoarder and theres clutter all over ive cleared it then cleared it until I let it go I was wasting my time now I hate living like this but have learned to turn a blind eye OR go mad!

Take care:D

Superwoman? Me? You have to be kidding, I don't live with mum, I could not live with her. People who live with those who have dementia are superhuman, I could not do that. xx
 

nerak

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Jul 4, 2013
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ireland
Oh thats ok then at least you have a haven!! I am living with my mum and its a nightmare she HATES when I go out and hurls abuse at me then its like its all forgotten when I return the next morning?? I did move out once last year but whats the point I still had to come in everyday also my cat lives here and I couldnt bring him with me so I moved back in couldnt afford to live away as im not working.


My friend said I was more stressed when i wasnt living here as i was worried she do something to my cat???????? Hes a little pet and keeps me saine.

I am waiting for a settlement from an accident so this should happen in oct so thats why im trying to get things in order so I can leave and have some sort of a life.

I know my mums ill and I want the best for her BUT i cannot handle the abuse and nor should I!

I think you can relate I had an abusive father and ex hubby and aint never going down that road again.

Feel better now youre not living with your mum as its bloody tough and youre right anyone that can cope are superhuman!!

My sis is coming soon she will be here with mum for a week so im getting good at planning not to be here and let her have a whole week with mum and see how she feels BUT my mum is NOT the same with her and says yes you go out ill be fine ENJOY YOURSELF??:mad::mad::mad:

Anyway things are starting to get worse with mum she cant stay on her best behaviour for as long as a week my sis will be drained by the end of it BUT she can then ****** off back to her nice life and leave the **** to me again!!!:(
 

Noorza

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Jun 8, 2012
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I get the anger and the abuse, have my head down for now but am so grateful I can get away from it all. I might suggest she has a little holiday at my sister's. She hasn't even been in her house in 30 years, so my sister will enjoy that. (sarcasm emoticon needed).:D
 

Robstick

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May 4, 2013
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Reading this makes me glad I am an only child, the invisibles actually are just that, non existent.

On the flip side though it means apart from wider family, I have nobody to turn to...

I wish you all the luck and although I can sort of understand why siblings don't get it, It does annoy me that people can be so callous and shallow.

I have no advice to give, apart from do what you feel is right, for you and your mum. There is lots of literature out there you can suggest they read, if they want to know what it's like (though no substitute for experience). I normally suggest "Keeping Mum" by Marianne Talbot, which is an excellent read and covers most emotions.

All the best

Rob
 

nerak

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Jul 4, 2013
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ireland
thanks for that i may get that book Rob!! Ive told my sis and aunt to talk to their own docs or someone about dementia or I never want to see or hear from them again! Everyone needs to be concerned and know what to do and how to behave around them.

My bro snaps at mam after being here less than 15mins BUT when I lose it im a threat? Im aggressive and Im the problem:mad::mad:

Im not totally alone my bro in uk is VERY supportive and is emailing the others to tell them to expect the worse as this is looking like dementia.

As Noorza says will they be any different when shes diagnosed?? Who knows?? My neighbour told me that they may not have a choice as the psychiatrists will want to c all the family and explain things?

Would love my family in a room with the pros all these years ive been jumping up and down telling them somethings wrong as fell on deaf ears? shes depressed what can we do??

Time will tell