Help for the carer

[helpless_son]

Hi all,

Just registered and don't know where to start, so I'll summarise what I'm looking for and hope you can point me in the right direct.

My mum has the dreaded A. and my dad is her 24/7 carer. The family are obviously concerned about mum but realise her situation will get worse and we can only visit as often as possible and give what support we can.

My dad is now at breaking point and we realise if this happens the situation will become worse all together.

Mum has good days and bad days. Sometimes she can hold a reasonable conversation and the memory's not too bad, but she's starting to see dad as the bad guy. On the other side she is totally dependent on him and follows him round the house, into the garden and has become a shadow. She has started to reject any visitors including friends and a most of the family apart from her 'boys' (I have 3 brothers).

The summary is really dad needs a break and depression is setting in. He descibes the situation as "Groundhog Day" not seeing anyone, doing the same routine, running the house, I'm sure you know the situation. He has managed to cope in the past by having the odd short break to get away, do something different and get the feel of a holiday. She now refuses to leave her house except for local day trips. She also refuses to have any help be it cleaning, social/health visitors, etc.

How can dad get a break when he knows this will upset her and fears the consequences. She already goes into a rage if he tries to get her to do something she doesn't like and then sulks and ignores him for hours.

I'm sure I've missed out things, but any thoughts?

Dad would love to join this sort of discussion himself, but the computer is also the enemy now, along with the phone as he's "checking up" or "conspiring" against her.

 

[BeverleyY]

Hi and welcome

I recognise so many of those behaviours, as will many.

My Dad used to follow my Mum around like a shadow, even waiting outside the toilet for her.

I can honestly say, I never realised quite how bad it was for her until she died. It was only then I realised how wearing it must have been for her - she wasn't well herself. If only I could have her back for 5 mins to say 'Mum, I know what you mean now'.

Dad never wanted to go out etc. when Mum was alive. All he wanted was just them together. Now she has gone, he is happy to go out and can't wait to escape from the house (but on his terms).

It is very difficult trying to get someone with dementia to do something they don't want. I have got dad a day care space 2 days a week. He says he doesn't like it because everyone is old, and crazy but I know when he is there he is safe, so I don't give him a choice (I know that sounds harsh, but the alternative is he would walk the streets for hours on end which is what he would rather do).

I know your Mum won't like it, but I do think trying to get her along to somewhere like that will help your Dad by 'buying' him a little peace.

Best wishes to you.

Beverley

 

[crazyjude]

Helloo!! I can only offer what Ive done myself but the first thing I think is to try not to feel guilty if you need more help. Its really important to gather a support network around you for the sake of the rest of your family as well as your Mum. If you and your Dad are feeling beaten down then you cant be much help to your Mum, so you really need to make sure you are getting the support you need to cope. This might mean someone else coming in to assist at some point in the day so your Dad can have some time to himself or even your Mum having respite care or having some nursing assistance. My Dad's Dr and Social worker were good at helping me with this and assuaging the guilt I felt at leaving Dad with someone else for a short time. I would return to him feeling stronger. Hope this helps! good luck! xx

 

[Juliet17101]

I can identify with feeling that guilt, but one the most valuable things I learned as a carer was: Don't wait until you are drowning to ask for help. Whoever is minding your mum may have to deal with tantrums and rages but its still crucial that your dad takes care of himself and gets a break whenever he can.

 

[helpless_son]

thanks for your support

Thanks for the replies.

I wouldn't wish this on anyone, but it's comforting to know there are others experiencing the same. We were starting to think that this was a unique situation.

I feel stronger becoming part of this and spending some time reading other posts. I'll try to pass this on to my Dad and summarise the advice which I believe is if he can't cope he needs to do something earlier rather than later. I will also add that it's his decision but he has the support of the family.

Just touching on one of the issues raised, he doesn't get much help from his GP or others as his shadow is always there with him. That causes 2 problems, he can't openly talk about how it's affecting him or about changes in the behaviour of my Mum. Again this will cause distress, sulking, rage .... Perhaps he also needs to bite the bullet on this?

Thanks again, much appreciated as I know you must all have your own problems to deal with.

 

[bongo62]

Hi there

I recommend you get the book Contented Dementia by Oliver James, it is the SPECAL approach to dementia, I found it provides some guide to help you understand dementia from the patients point of view and how you can help.

I also went on a course that SPECAL run in Burford, it was a 1 day course called Specal Friends and Family it was fantastic and gives you a guide for you, family and your father on how to manage everything to ensure your Mum is happy and contented and the carer is also getting some time away. It does cost to attend but you may be able to get funding from a Carers Organisation Charity.

I live away from my parents and do their shopping by the internet and delivered to them. Age Concern were fantastic and can offer lots of help and guidance. They provide a free sitting service to allow the carer to get a break. My Mum was caring for my Dad (both in their 80's) and via Age Concern we arranged a cleaner to come once a week, as there was no way my Mum was able to clean the house because she was completeley caught up with the care of my Dad. Age Concern also have a handyperson service that can come and do small jobs around the house.

Look at my post earlier today Alzheimers Help - What I have Learnt by bongo62 this may also help as the dementia gets more severe.

Hope this helps, honestly look at SPECAL I found it fantastic and so did my Mum.

Ali