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Coping with parent's Dementia/Alzheimer's - does it fit here?

(67 Posts)
silentcatastrophe Fri 18-Sep-09 18:24:11

Anyone else in the same situation? Just breaking through some of the barriers and finding out a lot of things that are not good, but from the POV of my parents' children, to be expected.

GentleOtter Fri 18-Sep-09 18:27:48

We looked after my Dad who had vascular dementia, silentcatastrophe. Are you looking after your parent at home?

mumonthenet Fri 18-Sep-09 18:38:12

There is lots of help out there - just time-consuming and stressful to find it.

How are you coping?

Anifrangapani Fri 18-Sep-09 18:40:44

The Disability Living Centres have wonderful advice about what help is availiable.

They are dotted around the country.

silentcatastrophe Sun 20-Sep-09 19:38:39

Thank you for your replies everyone! I don't live near my parents. My father is an abusive parent. Our main concern is that he may be abusing my mother (bullying, controlling etc). We have been fed all sorts of lies about my mother's health and her life generally by my father, and the memory clinic is being fantastic. They have established that my father is controlling, and that he has been refusing help for my mother then telling people that it is her decision. The whole thing blows hot and cold and it is very hard to establish what the hell is going on. My mother is far too thin and doesn't like my father's cooking (it's not good). He thinks of gin as food.

My brother who lives closer to my parents is doing the donkey work and finding out about care and other things. It's horrid and lonely being fed all these lies. So many people say what a fabulous man my father is, but I don't suppose they've been beaten up by him.

alypaly Mon 21-Sep-09 11:34:16

silentcatastrophe sorry to hear your situation. I looked after my my mum 24/7 after she had a stroke and then she developed dementia as a result. Have still got all the leaflets in a cupboard somewhere detailing all the help available.
It was a minefield, complicated with emotions and frustration. We got through it all in the end though.


silentcatastrophe Thu 24-Sep-09 08:59:03

My brother is doing very well in persuading my dad to accept help. Mum's score has dropped from 18/30 to 12/30 over 2 years. I will try to contact Mum's doctor today to find out more. I feel very confused at the moment and am smoking again, which I know is stupid, but I don't know what to think or do.

alypaly Thu 24-Sep-09 10:07:19

sounds like you have alot of issues to deal with.

The anger you feel about the lies and other peoples opinions.

being beaten up

and then having to do the right thing for an elderley sick person.

Dont try and deal with them all at the same with the most important first.

alypaly Thu 24-Sep-09 10:13:45

my friends dad had a behaviourally aggressive form of dementia and they found he had a virus called loius epstein barr virus which was making his dementia much worse.

Has your dad had strokes or is it old age that has made him like this?

silentcatastrophe Sat 26-Sep-09 10:17:25

I've spoken to Mum's psychiatrist. They are giving my dad a couple of months to get the care things in place, and if he has still taken no notice, they will bring out the guns. My father has always been a nutter, and I think he has remained in some ways stuck in the mentality of the under 5s. My parents are not old - they are both below 70.

belcantwait Sat 26-Sep-09 10:23:02

hi silent, i am in pretty much the same position as you. my dad was dx with middle stage vascular dementia and alzheimers in august. its been crap and difficult trying to find info and help. we were given the diagnisis and just sent on our way angry. i have found out local age concern has been an invaluable source of info and support.
like your dad, my dad is only 68 and my mum is 70. she has health issues of her own. BUt i am the only child of only children and they sadly dont have any friends either so feel like i am dealing with it all on my own as my mum, bless her, hasnt a clue! dont feel old enough to deal with this sad and my dad should be much older too sad

belcantwait Sat 26-Sep-09 10:24:59

oh god just quickly reread your posts. so sorry for you and your mum sad . there is alot of help and support - i would try age concern if i were you if you havent already.

silentcatastrophe Sat 26-Sep-09 18:22:01

I am sorry you are having to deal with this grim disease alone. I don't live near my parents, so one of my brothers is trying to organise care and help.

I have found the Alzheimers Society fantastic. They advised me in the first place to speak to the memory clinic. Apparently social services may be able to help. The Alzheimers Society has offices all over the place, so it's worth finding out any near you. I have been told that the gp is the gateway to all sorts of support. Since your dad already has a diagnosis he must have been to his gp already.

It's hard when people are relatively young. I think my dad is in a kind of denial about the gravity of the situation. My other brother is in total denial.

alypaly Mon 28-Sep-09 18:17:57

belcantwait ...i had to deal with my mum on my own and looked after her 24/7 til i nearly collapsed with exhaustion.I am virtually an only one,my stepbrother didnt want to know.
The help you can get is from the social worker.
Find out from her surgery who her social worker is and then they can point you in the right direction.If she has been in hospital recently she will also have A hospital social worker who can help too.
You maybe entitled to claim attendance allowance for her depending on her needs too...up to £240 a month approx.
Age concern will send you a lot of leaflets too,

Ripeberry Mon 28-Sep-09 18:34:39

My dad is looking after my mum (I live over 50 miles away)but my brother lives only 15 min walk away so visits more often than me.
Problem is that my Mum won't care for herself and gets aggressive if anyone tries to help her wash.
She gets incontinent (doubly) and basically lies on her bed letting it all out.
My dad has to constantly change the bedding and now he is giving into her as she wants wine and he has been giving it to her in a baby bottle!
I visited on Saturday and I want to report my dad to the authorities, but I just don't know where to turn.
Nurses come to the house but they never ask to see where my mum sleeps and as they know when they visit he forcibaly makes her have a wash and makes her stay downstairs until they have been.
Then its back upstairs to the filthy bedroom.
My dad, says he is doing all he can as he is trying to work full time (works from home and had strict deadlines)and he does not want to be labelled as being neglectfull.
I think he is trying to cope the best way he knows how, contain the 'problem' and keep it quiet (give wine, cigarettes).
Do you think if I contacted her GP would they take ANY notice?
My dad is too proud to admit he can't cope, sometimes I wish he would just have a breakdown in front of the nurse.
The GP almost came out for a house call a few weeks back but my mum refused at the last minute.
If he had come, they would have got her in a home straight away.
I just don't want to get my dad in trouble he is a good man, but far too proud and he does love my mum, but its getting too much for him (he is only 63yrs old).
HOW do I get help?

alypaly Mon 28-Sep-09 18:53:32

speak to social workers

silentcatastrophe Mon 28-Sep-09 20:23:35

It's so hard when there is so much denial going on. My dad is very controlling. The psychiatrist said she'd noticed as much. She also said that the gp is the gateway to all sorts of help. Can you get the gp to the house?

Mum's psychiatrist has told me to look up the Court of Protection and The Mental Capacity Act to find out what will happen if Dad refuses help and still has done nothing in a few weeks. The pressure on my brother is enormous, and my father is just up to his old tricks. It's very sad to see my brother being messed around like this.

Like you Ripeberry, I don't live on the doorstep. I have said to my brother that I will go and stay with him to help sort things out. Can you phone your mum's gp? I spoke to my mum's gp nearly 2 years ago about mum's problems, and needless to say, it was as much good as talking to a chocolate tea-pot.

Ripeberry Mon 28-Sep-09 20:58:44

That's half the problem. The GP thinks mum is 'faking it' and my dad has had some nasty words with the GP.
But because of my mum's past history (self-harming, manic depression, alcoholic), the GP has said no-one else will take them on.
Sometimes I wish that GP would retire and let someone else take over.
Also it does not help that my parents can hardly understand him as he has a very strong Indian accent and deals mainly with Asian patients....its a long story how my mum ended up with a GP who is based over 10 miles away.
Another problem is getting details of who the social worker is, as they won't give me details due to the data protection act.
It's such a vicious circle.
I think I will get in touch with Age concern and see what they say.

alypaly Mon 28-Sep-09 22:44:20

if your mum has been seen in the hospital as an inpatient she will have had a hospital social worker allocated to her well being.
I found them immmense help and she even filled in my form for attendance allowance as she new how to word it properly.

if your mum is able to answer questions with a basic yes or no, get a kind solicitor to draw up an 'enduring power of attourney 'in yours and your brothers name so that you can take control of all her finances..just incase dad gets awkward. It is much easier to do it now rather than if she deteriorates. Once they get past a certain level of underdstanding things you cannot get power of attourney without going thro massive lengthy procedures with solicitors.

alypaly Mon 28-Sep-09 22:45:51

Ripeberry the same and go for this enduring power of attourney and then everyone has to speak to you as you are acting on their behalf and in their best interests.

silentcatastrophe Wed 30-Sep-09 11:23:03

I've spoken to Help The Aged about what it means to invoke the Court of Protection and the Mental Capacity Act. I have also spoken to my parents' solicitors about power of attorney. My brother is still trying to work out a care plan for Mum but at least we now know that he can't play the money card in order to refuse her care.

Niecie Wed 30-Sep-09 11:42:43

Yes I am in the same situation although possibly not so far down the line.

My father has had a dx from mental health nurses but is awaiting a hospital appointment with the doctors and a brain scan. He is going to get monthyly visits from the nurses.

He is also partially sighted due to age realted macular degeneration.

He is in denial about it all too. Just says that everybody forgets things when they get older. He even denies that he has much wrong with this eyes and claims that eating spinach once a week has cured him. Never mind the operations and the visits to the consultants and the fact that he still can't see to read or do anything with detail.

He is 79 and is currently being cared for by my poor mother who is being driven batty by him and is having to deal with his control freakery and general nastiness. She is coping but mainly by going out a lot. If he gets much worse she won't be able to do that and I dread to think what will happen then. He has also taken to downing too much alcohol (a bottle of wine in about 20 minutes although thankfully contained to twice a week at the moment). He also smokes. The nurse did say that as they get worse they forget to smoke and drink so maybe that problem will sort itself out.

My father is also abusive although emotionally rather than physically. He seems to have all the traits of narcissistic personality disorder and unfortunately, it seems to be getting worse as a result of the dementia. The nurses picked up on controlling ways and his current obsession with God.hmm

I see them a couple of times a week with my boys but my father is fixated on asking my DS1, who is only 9, whether he believes in God and then goes off on God related rants at the poor boy. I wouldn't mind but it is utter garbage (I say that as a church goer too).

I am torn between wanting to help my mother out and letting her see the boys and wanting to keep the DC away from my father.

Not sure how much help my DB will be - he just says that my dad would be better off dead which is a bit harsh but probably true, although I hate to say it.

Anyway, compared some of the others on this thread we have it easy at the moment but I am now a bit scared about the horrors to come.sad

Niecie Wed 30-Sep-09 11:44:58

Oh and my mother has just sorted out the power of attorney this week.

It really early days for us.

Sorry that last post was a bit long.blush

silentcatastrophe Wed 30-Sep-09 20:46:19

It's so difficult when there is some degree of family dysfunction. Mum's psychiatrist realises that dad is an occasionally violen man, and that he is very controlling and a bully. She said that they meet couples like this on a regular basis, and that the aim is not to cause rifts in the family, more than there already are. She also said that for some people, they don't realise that they're losing their memory, and it can be better for them like that.

It's like suddenly being thrown into being the grown-up, and as my mum said, when her mum died, oh it'll be our turn next

alypaly Thu 01-Oct-09 11:09:23

Niecie dont let your DB feel guilty about wishing they were is a kind thought not a nasty the person you see now is not the person you is the illness that is making them like this. A complete personality change is not unusual and this disease is never the same in two people.

when my mum was poorly she initially knew she was loosing her memory as i found lots of pieces of paper in her(when i sorted it out after she was hospitalised)with things written on it that i now find sad...
eg. I feel funny but dont know why,
Cant remember if i have had lunch so i am going to write it down.
my phone no written on dozens of pieces everywhere in the house.
Feel strange,kind of muzzy.

it really upset me when i found these as i started to realise the confusion she was in.

Thankfully not all people with this condition end up mum was meak and mild right to the end and always remembered to say please and thankyou. What hurts me so so much even now is i always remember her saying thankyou for looking after if i wouldnt have...i loved her soo much.
Even 2 years down the line,after her death, it still makes me cry to write that down to you and i treasure the cards she sent to me when she could write,where she wrote the same thing.

You are so right silentcatastrophe,it is suddenly a role reversal and you become the parent looking after this adult that is regressing to a child like state.
It is quite frightening as i found out when my mum do start to think...christ its me next...a horrible reality check.
Sorry this post is sooo long.
I have been thro this right to the end so if i can help...

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