Mum and dad both have dementia ..Just need some advice really!

[snowygirl]

Its been a while since I posted but I need some advice. To recap quickly mum and dad both have dementia..dad Alzheimers and mum Vascular. They both live at home alone with no carers and the local Mental Health Unit sending someone in briefly every 2-3 weeks. None of us siblings live locally and I'm 1.5 hrs away. We take turns to phone every evening. Next week we have a 'catch up' meeting with the MHU and mum and dad both have a dementia apt with their consultant. At home things have been sliding gradually but its difficult to understand all that's going on with both mum and dad's memory problems. Dad has been ringing us a lot lately in the evenings saying lots of things about trying to get home and getting away from the woman he lives with(its mum but he cant recognise her always)and he has mentioned doing away with himself. Mum wont talk about it and cannot understand how to help dad because of her own situation and I guess by the time he rings us she has had problems with him all day. She refuses to come to the phone. Having said that she will not concede that she could do with help and we think the time has come once again to try to move onto the next stage.
My question is how do we do this? We tried just after Christmas to persuade mum to have a carer in but she refused. The MHU said that we couldn't do anything while she said no. WE tried to convince her to have one of those care things that you can buzz if you are in trouble but she refused. Its been another 7 months now and the decline in them both is evident. I feel like shouting 'I have two parents with this disease please help me!' but I fear it will fall on deaf ears. Surely two people living on their on with dementia warrants some attention? We need to be more forceful next week at our meeting to get help with the carer situation or whatever should come next. I'm actually jealous of two friends who have recently been able to get their one parent with dementia a carer, and feel much better for It, but in both these cases the parent has been compliant. My dad isn't getting the help and support at home that he needs as mum cant help him. We don't think that they eat properly. I'm sure even a friendly chat over a cup of tea with someone would help him greatly and us too. Can anyone suggest how to move forward? I just fear that the answer to our problems next week will just be we have to carry on as we are until something happens and I'm just tired of waiting for this 'something'. Many thanks for reading.

 

[Beate]

It's a big problem when people do not comply. Nevertheless, Social services can't just wash their hands off them. Phone them tomorrow and say there are two vulnerable adults at risk who can't look after each other and they are failing their duty of care if they don't provide support pronto. Say your Dad has mentioned suicide and they don't eat properly. If they fail to accept carers, sitters or a day care centre then quite frankly you will have to mention care homes. They deserve to be safe and looked after properly, and Social Services will have to help you with that. Be prepared of having to undergo a financial assessment of them.

 

[Feline]

Its been a while since I posted but I need some advice. To recap quickly mum and dad both have dementia..dad Alzheimers and mum Vascular. They both live at home alone with no carers and the local Mental Health Unit sending someone in briefly every 2-3 weeks. None of us siblings live locally and I'm 1.5 hrs away. We take turns to phone every evening. Next week we have a 'catch up' meeting with the MHU and mum and dad both have a dementia apt with their consultant. At home things have been sliding gradually but its difficult to understand all that's going on with both mum and dad's memory problems. Dad has been ringing us a lot lately in the evenings saying lots of things about trying to get home and getting away from the woman he lives with(its mum but he cant recognise her always)and he has mentioned doing away with himself. Mum wont talk about it and cannot understand how to help dad because of her own situation and I guess by the time he rings us she has had problems with him all day. She refuses to come to the phone. Having said that she will not concede that she could do with help and we think the time has come once again to try to move onto the next stage.
My question is how do we do this? We tried just after Christmas to persuade mum to have a carer in but she refused. The MHU said that we couldn't do anything while she said no. WE tried to convince her to have one of those care things that you can buzz if you are in trouble but she refused. Its been another 7 months now and the decline in them both is evident. I feel like shouting 'I have two parents with this disease please help me!' but I fear it will fall on deaf ears. Surely two people living on their on with dementia warrants some attention? We need to be more forceful next week at our meeting to get help with the carer situation or whatever should come next. I'm actually jealous of two friends who have recently been able to get their one parent with dementia a carer, and feel much better for It, but in both these cases the parent has been compliant. My dad isn't getting the help and support at home that he needs as mum cant help him. We don't think that they eat properly. I'm sure even a friendly chat over a cup of tea with someone would help him greatly and us too. Can anyone suggest how to move forward? I just fear that the answer to our problems next week will just be we have to carry on as we are until something happens and I'm just tired of waiting for this 'something'. Many thanks for reading.

Would you be able to arrange a visit with you to some day care, either in a home or at a council centre, to see if they might go regularly a couple of times a week, as long as they can remember when to be ready to go.
I have a similar problem, my husband has Alzheimer's and I take him to day care, but both my parents have memory problems but are feircly independent and have cancelled care I have put in place for them with their permission, having forgotten all the trouble I went to arranging it in the first place !

 

[Long-Suffering]

Hi Snowygirl,

I'm in a similar situation to you. Dad has dementia. Mum has long-term mental health problems and perhaps also dementia. Mum is dad's carer and I live abroad and am an only child.

Like Feline, I set up carers going in, but mum cancelled them and is getting more fiercely resistant to outside help and contact as time passes.

The situation now is that I am in touch with the Community Carer and she is putting me in touch with the Care Coordinator at my parents GP surgery, but nothing can be done at the minute because nothing is "happening". The Community Carer went round to see them a few weeks back, but at the moment there is nothing she can do as mum and dad still both have capacity (only just in dad's case) and they don't want carers going in. So it's a situation of waiting until something happens unfortunately. That often seems to be the way.

Also, everything takes so long to do. Emails take weeks to get answered and if I didn't keep prodding people and reminding them the whole process would stop, I'm sure. The system is just overloaded.

Best of luck.

LS

 

[snowygirl]

Thanks for your advice. It is really hard when one of the parents is not compliant I'm sure if it was just my dad we were dealing with he would be ok with carers coming in and if mum was in her right mind she would see the sense of it too. I'm going to see them on Friday and I'll try to see if mum might open up a little if I can find the right time. Dad does go to a club on a Thursday but mum wouldn't go when asked and when we took dad to a day centre once he refused to go back! I will try and be more insistent with the Mental Health team next week and with the consultant. When we saw him last(in March)he was meant to be arranging an emergency meeting but it never came about. You are right Feline everything takes so long but when you're the carer its all you can think about day and night. Thanks again for your replies.