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Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello @Cant do anything right ...I’m glad you found us! It’s so good to have someone to talk to, is t it? Lots of us know that feeling of isolation when you are in a house with someone with dementia...but feel you are alone. There’s obviously a lot going on in your parents house, but I have a few suggestions, and m sure other members will be along soon to give ideas too. When did your parents last have an assessment of needs? Because maybe Social Services could become more involved to give some support. Is there an Admiral Nurse in your area? They provide support for carers, but will be up to speed with what is available for your parents.
There is just one thought I have...which may not be helpful, so ignore if you want! I’m ust wondering if your parents life style is ‘good enough’. I used to work in childcare and we used the phrase ‘good enough parenting’. It might not be ideal, it might not be what we would do...but is it good enough? So I’m wondering, if you are looking in from the outside and seeing how it could be so much better...but there is an element of choice for your parents...and maybe they need to want the help?
An up to date assessment of needs would give an objective opinion.
Please,keep posting, keep checking, others will be along to advise too...and you can sort through and accept or reject as you please!
 
Jan 30, 2018
3
Hello @Cant do anything right ...I’m glad you found us! It’s so good to have someone to talk to, is t it? Lots of us know that feeling of isolation when you are in a house with someone with dementia...but feel you are alone. There’s obviously a lot going on in your parents house, but I have a few suggestions, and m sure other members will be along soon to give ideas too. When did your parents last have an assessment of needs? Because maybe Social Services could become more involved to give some support. Is there an Admiral Nurse in your area? They provide support for carers, but will be up to speed with what is available for your parents.
There is just one thought I have...which may not be helpful, so ignore if you want! I’m ust wondering if your parents life style is ‘good enough’. I used to work in childcare and we used the phrase ‘good enough parenting’. It might not be ideal, it might not be what we would do...but is it good enough? So I’m wondering, if you are looking in from the outside and seeing how it could be so much better...but there is an element of choice for your parents...and maybe they need to want the help?
An up to date assessment of needs would give an objective opinion.
Please,keep posting, keep checking, others will be along to advise too...and you can sort through and accept or reject as you please!
 
Jan 30, 2018
3
Thank you for this.
It's a bit daunting knowing how this works as I am rather backward on these things. So thank you I will persevere. It's a bit like the whole journey... stabbing in the dark...

I know what you mean about "good enough". And I'm the first to admit that this is all about them "letting me".
My mum will let me. She knows she has zero quality of life and how much it could be and she'd like it to be. But she won't admit she can't cope with anything. She does often admit that my dad prevents her from having the quality that she'd like.
My dad has always been looked after by her. She handled everything, finances, food, welfare the lot. When he had a sudden heart attack 6 years ago, her dementia really came into its own as did his control and need to control everything for them. Right down to not admitting there was anything wrong with her.

She now can't use the phone independently, gets lost and confused although always denies it. She never goes anywhere without my dad because he rightly stopped her driving and the few friends she had simply don't want to see the person she has become.
It's the eating which worries me most at the moment. He controls what they eat, when, if and hasn't the feintist idea about it. She tries to keep control, but each time I'm up I have to covertly decontaminate their fridge in the middle of the night. My dad sometimes gets it... but it's a treading on eggshell covert thing. I can explain calmly, as a game, repeat but it all depends on him... and much the same as mum, there is no way of telling or predicting when or if this might be.

Social services and needs assessment is a whole other nightmare. I know I need to action them into this, but there is a stigma which they attach to it. They also lie to just about everyone other than me about how bad things are... to the extent sometimes that I feel that it is me with the mental health issues. And none of this is helped by the fact that my dad simply refuses to wear his hearing aid!
The psychiatrist and CPN and OT and careers network person get it... but it is 100% dependent upon me reporting, filling in and evidencing, which I can't always do from 400 miles away and when they refuse or are unable to talk about it. And it is the abuse that I get back about it all from my dad. I know that deep down he knows that I have always been and am steering them in the right direction, but me and everyone else know too that it is possibly going to take him reaching another heart attack before he admits that he isn't coping.

I like your good enough test... and I'll spend some time putting things through that filter.
Thanks so much
 

Rachiemc

New member
Jan 30, 2018
2
Hello, a GP friend of mine recommended this group. Thank you for letting me join.

Ever since my father died 18 months ago I have watched my Mum become more confused, muddled in her communications as well as forgetting important dates like birthdays or when something happened. In all other respects she is fine but I know she is not well. My Grandma had significant memory loss before she died at 90 but my mum is only 74 and the signs I see are much different.

I thought it was grief at first given how awful my Dad’s illness was and the fact that he did everything for her but I now think it is more than that. I get frustrated and cross with her due to my own worry and fear for her which makes her worse. I don’t live with her but I try and see her every other weekend but even making simple arrangements to meet her is difficult.

I am now struggling with getting her to the doctors to talk about it. I have a brother but he isn’t much help so I feel it is left to me and I don’t know where to turn. I feel as if when I lost my Dad I lost my Mum too and it’s heartbreaking.

She is 100% aware of her confusion and is frightened. The other day we made an appointment for her to get her eyes tested and she was able to give her address, dob, name etc but when we got home she couldn’t remember the time or day the appointment has been arranged for.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,827
Kent
Hello @Rachiemo Welcome to Talking Point.

What I did and many others on TP did was keep a diary for a couple of weeks of all concerns and present it to the GP in confidence.

The GP can take it from there. Some ask patients in for a well woman / man check up or check ups related to milestone ages or prescription monitoring.

You'lll probably receive other suggestions too.

I hope this helps.
 

Molly Hook

New member
Jan 28, 2018
1
I am caring for my mum who has had Alzheimers for the last 21 months. She is also doubly incontinent. I have moved in with her as she can't function on her own in any way. My husband and two daughters don't really understand how bad it gets as they all work full time and have their own worries. I am stuck between the two homes, can't go home properly and can't leave her. I feel like I am just in limbo. I find her so frustrating, I want to scream sometimes. It can take me 3 hours just to get her into bed with her deafness as an added difficulty. I speak to her and she just looks away as if I havent spoken. My husband is also quite ill but I dont really have much time for him. Any suggestions?
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, @Molly Hook ...I’m glad you have found Talking Point. My first suggestion to you, is not going to be an easy one to hear...but it is not just your responsibility to be looking after your mum. Your family need you too, and your mum would never have wanted you to leave your own family to look after her. If she has got to the stage where she is doubly incontinent, then she needs a high level of care, that is almost impossible to provide by just one person. I would think she needs an assessment of needs, and this should trigger support in her home, or possibly a recommendation that she have 24 hour care.
As a first step, you could ring the helpline tomorrow, and they will advise you on how to go about getting the help you need to get support for your Mum...and to start getting your own life back. Sometimes the best help we can give, is to let someone else help.
https://www.alzheimers.org.uk/homepage/168/dementia_connect?postcode=#!/search
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Thank you for this.
It's a bit daunting knowing how this works as I am rather backward on these things. So thank you I will persevere. It's a bit like the whole journey... stabbing in the dark...

I know what you mean about "good enough". And I'm the first to admit that this is all about them "letting me".
My mum will let me. She knows she has zero quality of life and how much it could be and she'd like it to be. But she won't admit she can't cope with anything. She does often admit that my dad prevents her from having the quality that she'd like.
My dad has always been looked after by her. She handled everything, finances, food, welfare the lot. When he had a sudden heart attack 6 years ago, her dementia really came into its own as did his control and need to control everything for them. Right down to not admitting there was anything wrong with her.

She now can't use the phone independently, gets lost and confused although always denies it. She never goes anywhere without my dad because he rightly stopped her driving and the few friends she had simply don't want to see the person she has become.
It's the eating which worries me most at the moment. He controls what they eat, when, if and hasn't the feintist idea about it. She tries to keep control, but each time I'm up I have to covertly decontaminate their fridge in the middle of the night. My dad sometimes gets it... but it's a treading on eggshell covert thing. I can explain calmly, as a game, repeat but it all depends on him... and much the same as mum, there is no way of telling or predicting when or if this might be.

Social services and needs assessment is a whole other nightmare. I know I need to action them into this, but there is a stigma which they attach to it. They also lie to just about everyone other than me about how bad things are... to the extent sometimes that I feel that it is me with the mental health issues. And none of this is helped by the fact that my dad simply refuses to wear his hearing aid!
The psychiatrist and CPN and OT and careers network person get it... but it is 100% dependent upon me reporting, filling in and evidencing, which I can't always do from 400 miles away and when they refuse or are unable to talk about it. And it is the abuse that I get back about it all from my dad. I know that deep down he knows that I have always been and am steering them in the right direction, but me and everyone else know too that it is possibly going to take him reaching another heart attack before he admits that he isn't coping.

I like your good enough test... and I'll spend some time putting things through that filter.
Thanks so much
You might want to consider starting your own thread so that more people see your posts and have the chance to answer any questions you might have...or to sympathise with any rants! Go to the forum ‘I care for a person with dementia’ and click on the ‘new thread’ button on the right.
 

Ezzer69

New member
Jan 31, 2018
1
St helens
Hi my name is Eric I am 48 years old and I am a carer for my nan Ann . She is 89 years old and has recently been diagnosed with mixed dementia.
 

Daffodil 93

New member
Jan 31, 2018
2
Hello
Am new here so please bear with me while i find my way round. have come on here to find anwers to my questions and advice also for support.
My grandmother has vascular dementia/alzheimers has well and i do find it difficult to cope with has being family . i have no other support has its just me to deal with this no other family to help.
i was informed this morning that my grandmother is now sleeping all the time now and has no mobility which is due to both arthritis. can someone tell me if this is part of another stage of vascular dementia.

hope i have done okay with this post has unsure what to do.
many thanks.
 

karaokePete

Registered User
Jul 23, 2017
5,635
N Ireland
Hello @Daffodil 93, welcome to TP. You will find this a friendly, informative and supportive place. Don’t worry about having to take time to find your way around as that’s as it should be. I am sure others with more experience than me will be along to help you soon. However, I do know from other threads that it seems to be common that people will sleep more as their condition progresses.
 

Worried 1

New member
Jan 31, 2018
5
Ilkley West Yorkshire
Hi,
I am so glad that I have found this site, and I hope that you are able to help me with many questions.
The main reason for me joining is that someone special to me I think is being mistreated, and don't know what I can do to help.
I look forward to hearing from others in similar situations,
and also that I may be able to offer others help.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,258
Yorkshire
hello @Worried 1
welcome to TP
though I am sorry to read of the concern that has brought you here
have a mooch around as you will find threads discussing the kind of worry you have
and when you're ready, start a thread so members can offer suggestions to help
just be careful not to give any info that would identify anyone concerned
best wishes
 

Lou16

New member
Jan 24, 2018
81
Thank you for being here.

I'm an only child of a mum who I have known has had autzheimers for many years now, and dad who has been in constant denial of it. They live in Scotland and I live in England, and despite having managed to obtain joint welfare and financial poa for them both, I only finally got her diagnosed in November when my dad admitted he could no longer cope with the fact she had no idea who he was.
On good days, good hours he is still in denial.
My mum is in total denial that there is anything wrong with her and the word can't be said anywhere near her.
Despite seeing small improvements with the hallucinagenics since beginning quetiapine, I know that neither of them are coping. We have a CPN attend every two weeks, have begun with an OT visiting too, and I have finally got my dad to engage with a carers network for support.
My husband and I know that my dad is actually making things worse for my mum. He won't wear his hearing aid, gets easily frustrated and agitatated and we are all reliant upon him for all of her care and wellbeing. He won't accept any back up at all from me and my husband and has ruled out any form of move for either of them.

I spend life doing things covertly and in secret, with almost no one to talk to or flag things up to, because no one in the family wants to hear or know or have their own caring and health requirements. They have no friends or social life other than themselves, but thrive when my husband and I come up, before my dad makes it painfully clear that he requires no help and doesn't want us anywhere near.

I'm visiting them now every month and trying as far as I can to provide wrap around to the CPN, OT and the careers netork facilitation with my dad. But of course, no one, especially them, tells me anything and my ability to do anything is entirely dependent upon them allowing me to.

I'm up with them at the moment for 48hours and have never felt more lonely scared or isolated in my life with two of the most precious people in my life.
It's really good to be able to read others. Thank you for being there.
hey there

I'm sorry to hear your story. Hang in there lass, at least you have your husband for support which I'm sure will be of help. I was 14 when my grandma was diagnosed with dementia. Im now 16 and sadly she passed away 3 weeks ago. We had great support from our CPN and OT they were really good. I hope they are of some help to you, your mum and dad. Has a day centre been mentioned to you? my grandma use to go to one and she really enjoyed it. It may just give your dad a break as well as your mum so he can have a few hours to himself.

I hope things go okay, its nice to read other peoples stories although they are sad.
Lou xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,258
Yorkshire
hello @Cant do anything right
welcome from me too
I notice your parents are in Scotland, which has a different social care system from that in England - there are members who know a lot about the system in Scotland, so it might well help you get more info if you'd be happy to add 'Scotland' as the location to your profile, and start a thread of your own in the 'I care for someone ...' forum
best wishes
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,850
69
Dundee
@Cant do anything right - hello and welcome to the forum. As Shedrech says you might find it helpful to start your own thread. I also think you might find it useful to phone the Alzheimer Scotland Dementia Helpline. It’s open 24/7 and you’ll find the number here -

https://www.alzscot.org/contact
0808 808 3000

I’m sure they will have an overview of the system up here and will be able to offer advice.
 

Daffodil 93

New member
Jan 31, 2018
2
Karaoke Pete , thank you for replying to my post and everyone also.
It's been a tough 3 years has my gran has been in a care home but only DX last year with Alzheimer's/ vascular dementia but the hurt is difficult when they blame you and call you a liar , that floored me and tears flowed.dealing with this on my own is difficult and have turned to this forum for many reasons.
Wish you all a good night I will return on the forum tomorrow x
 

Catwoman3

New member
Jan 31, 2018
1
My husband is 73. He has had Parkinson/Dementia for 8 yrs. His biggest problem is urinary incontinence. His Dr. Said med won't help, that incontinence just goes with this disease. His short term memory is getting worse.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,258
Yorkshire
hello @Catwoman3
welcome to TP
sadly your GP is probably right; they have probably checked your husband out for any physical causes
ask to talk with the continence nurse at the surgery, who may have some suggestions to help
you'll find a number of threads here discussing this problem, so you can read how members cope
settle in and have a mooch around the site - there's lots of sympathy and shared experiences from members
 
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