Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be worried sick about parents future.

26 replies

audreyroberts · 04/04/2011 20:58

My mum has MS - the type you have all the time - she is totally disabled cant go the loo by herself or pour a cup of tea - nothing.
My dad has dementia. He is mums carer. Mum totally refuses to have any help from outside in. So all they do is shout, argue and hate each other. He is angry with her and often cruel to her. She is intolerant of his condition and seems to believe he forgets things to annoy her.

I have tried social workers and doctors but no one is able to help as mum refuses help.
She seems to thinki accepting outside help is loosing control but she has no control now - i think it would give her control - but she refuses to see it.

They are both getting really depressed - and i am worried sick - not sleeping etc. Dh tells me what will happen will happen and to stop worrying but how can I. It is a hopeless situation.

OP posts:
thisisyesterday · 04/04/2011 21:00

i think your dh is right,.
as distressing as it is to see there is nothing you can do if she refuses help right now.
eventually there will come a point where she HAS to accept help, and then you can step in and make sure everything is covered, but for now i think you just have to respect her wishes and just help out if you can.

sad situation tho :(

compo · 04/04/2011 21:00

It sounds like they need outside help in the form of sheltered accomodation or residential care Sad

audreyroberts · 04/04/2011 21:08

she wont even hav someone come in to help her get up or shower - never mind think of residential care.

OP posts:
toeragsnotriches · 04/04/2011 21:08

To a certain extent, I think your DH is right but you can't just switch off that anxiety about them.

You could either find out about the actual help that is on offer and slowly, little by little hint at the kind of help your mum could receive. Another possibility is that you could let things build up to a crisis and then your mum would have to concede how hard things are for the family.

I just received similar advice over on Gransnet about a situation for my mum and I know how hard it is to be so worried about a parent. You sound as though you are the only family member involved in this and that increases the pressure.

FudgeGirl · 04/04/2011 21:10

Oh no that sounds awful. Your mum isn't being fair on your dad or you either. I'm sure she feels terrible and doesn't want anyone else involved, but it's going to get to a point where your dad can't look after her or that it would be unsafe for him to look after her.

Hope you get something sorted.

thisisyesterday · 04/04/2011 21:19

have you had a very blunt heart-to-heart with her?

i imagine she is scared of what's happening to her and to him, and that she is also worried about having a stranger in the house, i know i would be

maybe you just need to say to her "OI, this has GOT to stop"?

audreyroberts · 04/04/2011 21:26

thanks thisisyesterday - i have done exactly that. She just cried and kept going on about how i had no idea what her life was like. I try and explain she needs to take some control but she just shouts at me that I have no idea. While she is all there mentally - she seems not to grasp that getting help could only improve an intolerable situation.

OP posts:
QuintessentialShadows · 04/04/2011 21:45

Your situation is quite similar to mine. I really feel for you.

My father had a stroke 10 years ago, this left him paralyzed and in a wheelchair. He has some movement in his left hand. He is of reasonably sound mind, but he is rather helples practically. He cant write, he cant wash, he cant make coffee, he can get on the toilet on his own, but not off the toilet. My mum was his carer.

4 years ago my sister and I (she lives in spain, I lived in London with my family) realized mum was developing alzheimers, and we decided I should move back home (to norway) with my family to be near my parents, and try to help them, and get them the care they needed, and hopefully sheltered housing. We estimated it would take us two years, and then we would return to London.

Well, my mum was going slowly down hill, they were both in denial. They were both digging their heals in. Mum refused to go to the doctors for assessment and to get a diagnosis, and dad supported her. I have had a 3 year long battle trying to get them to see their situation and get help. She was diagnosed with Alzheimers in June 2010. They were still adamant they were fine at home. Mum could not plan meals, she could not shop, she could not put groceries aside, she did not understand the concept of time, she changed her daily routine and started getting up at 3 am roaming the house.

Meanwhile my dad was in bed, unable to get up and go and check on her, you know, with being disabled, and paralyzed etc.

She was no longer able to care for my dad. She forgot meals, she forgot coffee, she did not care much about hygiene, did not understand sell by dates, and would think nothing of eating and serving green mouldy cake, etc.

My mum took a very sudden turn for the worse in January. Dementia is a cruel illness, it can take sudden downhill turns. It was like my mums mind had been like an elevator, going slowly down from the tenth floor, and then suddenly the wires broke at the fourth floor and she crashed to the ground.

She started hallucinating. Scary stuff. She saw devils, people shagging, people hanging laundry, my kids playing and mocking her, all in her own home at night. She suddenly did not recognize her home. She started packing to go home. she packed knives in newspapers, a fried egg, some herring, her glasses, some empty jars, etc, all in newspapers, taped together, and put together with towels in a bag. My dad then stopped covering up for her any longer. He was exhausted from listening to her going ons in the night, while he could neither sleep nor check on her.

My mum was sectioned this January. Today, she believes she is a young woman who has just had a baby, and she lives in a flat share with other people. She thinks my father has found a mistress and thrown her out. She is deeply distressed.

In my experience, the combination of a person with dementia looking after a disabled person can go very wrong.
Has your dad had a diagnosis? If not, this should perhaps be your first step, securing a proper assessment and diagnosis for your dad. This will make your position so much stronger when trying to get a care package that suits their needs.

thisisyesterday · 04/04/2011 21:46

maybe it's partly about losing control? and not wanting to "give in"?

it must be hard, we have a close family friend whose MS has got really very severe over the last 5 years and it's heartbreaking seeing him like it. He also was very anti getting any help for a long time and it really took for his wife to become absolutely desperate for respite and a LOT of family members talking to him abut it before he'd consider it.

I hope you can manage to persuade her. would it help if you went at it from your father's POV? in terms of him needing help because of the dementia?

QuintessentialShadows · 04/04/2011 21:48

... and just to give you an idea how this all has affected MY life, this is my most recent thread. here

Punkatheart · 04/04/2011 21:50

Yes I also understand the frustrations and worry of this situation. My father was a paraplegic who refused help. I watched my mother care for him and at times, nearly collapse with exhaustion. Your mother's life will be improved by social services - they can adapt her home, give her advice.

Try and talk to your mother again. Be kind but very firm.

Shadows - how eloquently you tell your family's story and how deeply sad it is. I feel for you - and your mother.

reelingintheyears · 04/04/2011 22:01

Quintessential....i've read your posts on this before...

Was it about baking cakes with your Mum?

Hope you're ok.

bubblecoral · 04/04/2011 22:03

Does your Mum have an MS nurse, or go to one of the therapy centres for people with MS? Anyone at all that is a professional but whom she respects? If so, maybe someone on the outside could talk to her, someone that does have a strong understanding of what her life is like? I'm not saying you don't, but it would be harder for her to use that arguement against an MS proffessional. Maybe the MS society would offer to send her some information about what help is available so she could read and digest it in her own time. They could make out that this is something they do for all the local people suffering with MS.

What about her GP, could you write or talk to them about your worries and get them to mention it on her next routine visit? It might still take a while, but it could help her start to open up to the idea of getting help, which in turn could become more of a reality over time?

You sound like a wonderful daughter, I hope you and your parents get the support you all need.

QuintessentialShadows · 04/04/2011 22:09

Yes, reelingintheyears, that was in December, just under a month before she was sectioned. I was frustrated then, but boy do i wish we were back there, where she at least knew who we are, and could be a granny for my young boys. Back then, she was "just" a little forgetful. Little did I know that this should turn into a cherished memory. (thanks punkatheart, kind of you to say)

audreyroberts · 04/04/2011 22:09

Thanks QuintessentialShadows - I really appreciate you taking the time to reply - your situation sound amazingly similar - but you are further down the line than me - I think I have a lot of what you describe is to come. It is so scarey. You sound amazingly brave and selfless. I am not sure i am up to the caring role. I too have a job and 3 children under 5. I have a brother but he has absented himself. I have an amazingly supportive husband but he is very pragmatic.

OP posts:
audreyroberts · 04/04/2011 22:13

The GP tried to call her but she refused to speak to them. MS society - well meaning people but to be honest useless. She has no other support - i tried to get social worker involved but they said her case was closed as she no longer went day centre. (the council closed the centre and told her she was not suitable for alternative).

OP posts:
audreyroberts · 04/04/2011 22:15

Dad's Gp has said he has dementia - but he is still waiting on specialised appointment.

I worry i'll get sack from work between all the time off for parent'smedical appointments and kids illnessed - i've already been warned about time off and needless to say been ill myself with bugs as well as immunity low with all the stress.

OP posts:
Punkatheart · 04/04/2011 22:32

Oh you are having a rotten time. Please look after yourself. Your mother has to stop being so stubborn - but I think she knows this in her heart and is simply grieving for her past life.

I am sorry that I cannot help more. But I am a writer - if you need any letters shaping up or some advice in that department - please let me know. Sorry it is not more practical. But until you have a major breakthrough with your mother - it will be hard. Come back on here and keep us all informed. O rant. Or both.

sundew · 04/04/2011 22:46

Audrey I would ask to speak to your parents GP and say how concerned you are. Maybe they could go round for a home visit to see how bad things are - it may speed up any referrals that need to be made.

When my dhs dad had early alzeimers we used to do simple things like ordering his Tesco's groceries on-line. If you could do things like this at least you know they will be eating OK.

Would your mum accept having a cleaner - again it will be making sure the essential bits are done?

Birdsgottafly · 05/04/2011 07:43

What about a local support group as a start, for either your mum or your dads condition. Or a 'carers' support group. Family members can go along without their relative. Your mum would meat other people and see how having outside help as enhanced their quality of life.

Im sorry to say this but somesimes it takes a crisis to happen before some people will accept help of any sort.

Have you informed you employer of your situation. You are your parents carer and as such can be granted unpaid leave. If they warn you about taking time off for your caring responsibilities they are breaking the law.

You need to 'switch off' to some of it. Your dad arguing and being cruel may be part of his dementia. Your dad can be assessed for his care needs seperate from your mother by the SW. He is entitled to help regardless of the fact that he lives with your mum. Are you doing all that you can to push for your dads hospital appointment to come as quickly as possible. That may be part of the solution, go along and be honest about how things are at home.

Northeastgirl · 05/04/2011 10:56

Could you sell it to them that it would be a bit of a treat / luxury to have someone come in and cook some tasty meals for them? ie make it sound like a treat to have a housekeeper for the jobs they don't enjoy, rather than compulsory help because they can't cope?

QuintessentialShadows · 05/04/2011 12:01

Audrey, it is an awful position to be in, when you have to step into a parenting role for your parents, while you still have young children to care for. It is so draining. There was actually an article in Red about this recently.

You say you are in trouble with work for taking time off for taking them to appointments. Do you have to do this? At the moment both of your parents are in denial. Each of them regards to themselves, but also their spouse. They dont want to see themselves and their situation the way it really is. It is too depressing.

It is a difficult transition. To go from being the carer, to then be cared for. And for the person who has been cared for, step out of year long habits and start looking out for the other person.

The thing with dementia, is that the sufferer has no self insight into their own illness, and cannot see it for what it is. They dont remember they forget. One of the psychiatric nurses explained to me that often "elderly" couples enter a sort of symbiosis, where the dementia sufferer and the spouse start covering up for the dementia sufferer, by downplaying, explaining away what is happening, through fear of the future.

I think you might need to tackle this situation not from your mums care needs, but your dads. Arm yourself about information about Dementia, progression, and inform your mum. Not from the perspective of worry about HER, but worry about him. She might be more willing to talk about him and his needs, than talking about her own needs.

What will happen if you dont take time off for medical appointments?
I found that with my parents, I sometimes just had to step back and watch events unfold, to let them experience what happens when they are left to deal with things themselves. Kindness through cruelty, in a way. A helpful remedy sometimes to lift the head up from the sand.

I wish I had done a lot of things different. That I had not become so involved, that I had realized earlier that they are in fact adults, and make adult choices about their lives, and I cannot pick up the pieces when they make bad decisions. I have found that if you give your finger, they take the hand. It is a fine line between helping them in the right direction and ensure they get the care they need, and becoming relied upon to fix everything. Being assertive and setting boundaries is key. I have not managed that very well.

lesley33 · 05/04/2011 12:20

I can understand why your mum doesn't want outside help. It would be scary to think that you will have to rely on a stranger to carry out intimate tasks like washing you, dressing you and taking you to the toilet. And I can understand why the prospect of relying on strangers would feel like losing control.

But they both obviously do need outside help. I know it would be very hard to do, but I wonder if you should avoid doing anything that isn't absolutely essential and wait for a crisis to hit. Certainly don't do things that will jeapordise your job.

It does sound as if it will have to come to a head before your mum accepts outside help.

toeragsnotriches · 05/04/2011 18:20

QuintissentialShadows '... if you give your finger, they take the hand.'

So true, so often. They must be so desperate.

When this happens with my mum, I do feel a certain revulsion and so, so ashamed. I'd never let her know this but I just feel so cross she can't/won't help herself. I feel so angry she never foresaw this happening, or realised that the choices she has made for herself and my grandmother would have consequences that affect me and my brother so extremely. All unreasonable, I know but still there.

OP, I've been thinking about you today and wishing you well.

audreyroberts · 05/04/2011 19:59

Thank you for all the kind replies. The idea of waiting for a crisis (i.e one of them hospitalised)- is something a friend who is a nurse has suggested to me also - i thought at the time it was quite dismissive of her. However, I see from reflecting on replies especially from quintissential and toerags that maybe it is my best (only) option.

I have a bad back since having the kids and can barely lift my 4 year old - there is no way i could get involved in personal care without putting my own health in danger - god i feel selfish writing that! But I am just not going to that - I have a husband and 3 kids to think of - I have to be fit for them.

I sometimes - particualarly when lying awake at 3 in the morning worrting hope that my parents (who I love dearly and have been fantastic parents in every way) die soon. How terrible is that - I worked in a nursing home years ago and I cant bear my dad to end up like the residents in there. My mum is also just going to get worse and that too is heartbreaking and she is sinking deeper into depression since her sister died recently. I know I am selfish and awful thinking these thoughts.

OP posts:
Swipe left for the next trending thread