Confused, frustrated, frightened and I'm not the one with dementia!!

[Dave66]

Hello TP and all you wonderful people out there who are doing one of the hardest jobs in the world, caring for a loved one with dementia!

I don't know where to start really.
My Mam has Alzheimer's, we don't know how far into this horrendous disease she is, we don't even know when she was really diagnosed, as my parents did a great job of hiding this from the family.
Mam has been through the process of scans, tests etc and we are now awaiting a Cardiologist's report so we know which drug Mam can go on.

My Dad (bless him) is doing the very best he can, but he is really struggling and point blank refuses any help.
I have suggested to my Dad that they move closer to us and we will be able to help out as often as he/Mam needs us. Dad is open to this, but my Mam doesn't want to leave her home.

There is so much more to say, but I will just add the following for now.

HELP!!

How can we get everything that my Mam and Dad need organised, coordinated and put into place, when they are adamant they don't need help?

How do you get someone to move, when they don't want to?

Thank you so much for reading this, I actually feel a bit better for just typing the above. I look forward to all replies.

 

[marionq]

Slow down! They have been managing thus far without you knowing so you can wait a little longer for diagnosis, possible medication, carers assessment for your Dad from social services, assessment for your Mum to see what her needs are, help from them to fill in Attendance Allowance form ( not means tested) and council tax reduction form. If any of these don't happen then chase them up but generally once the diagnosis takes place other things start to happen. Your Dad might get a little overwhelmed with it all and you can help by listening and going over the mail with him on medical matters. Gradually what happens next will become clear depending on how your Mum progresses and how your Dad manages.

Good luck.

 

[Dave66]

Thanks marionq for your reply, I appreciate your time.
My parents have had assessments and besides telling the assessor fibs about how they are doing, they have point blank refused any help, but I do feel that Dad is becoming more receptive to it, probably as the weight becomes greater!

The council tax form has been sent in, but the AA form is another matter as neither of my parents want to discuss it!

I'm sure that once the fog of frustration starts to lift, then things will seem to fall into place a lot quicker for all of us, but the big issue of moving someone who doesn't want to move will still be there and we have no idea on how best to tackle this.

Thanks again.

 

[susy]

If people refuse help then all I can think of is to investigate all sorts of things in the local area. Things like day care, carers, respite care for starters. That way when a crisis happens then you at least will have the information and figures at hand to put something into place ASAP.

If all help is refused then really there is very little you can do except wait until a time comes that it will be accepted.

People in general do not like to be told what to do, especially when it comes to any mental health issue.

Does anyone have power of attorney for your parents? If not that should be approached too.

All the very best of luck with this. You need to be patient, it's a really harsh thing for both of them to come to terms with. People don't like asking for help until they are desperate. It's a human nature thing. Also things may go on that you don't like but.... These are adults you are dealing with so it is much harder to sort out than it is with kids!!!

X

 

[CJW]

Hello there,
I do agree that you need to take things gradually. There are no quick fixes and it is probably better to gradually evolve the help you can organise or contribute depending on needs. Maybe getting a carer in even just for a few hours a week would be a foot in the door. You could suggest this as being so that your father has time to do something alone, or the carer could perhaps take your mother out, or even do the ironing. It will be easier to step up the help once the person has been accepted. As far as moving them goes, unless they agree with enthusiasm and if they are more or less coping where they are I would tend to avoid any real disruption. I also agree that POAs for financial and health and welfare are essential.
Good luck, you will find the right way forward I'm sure.

 

[marionq]

As far as attendance allowance goes I was told this by the lady who filled it in For me - a certain well known millionaire claimed AA as it is not means tested. He got the top rate. I had said we were doing OK financially but she said eventually I was going to have to pay for help for my husband and I would need the AA. John and I have worked all of our lives and I am sure your folks have too so remind them that this not a "benefit" it is an entitlement open to all.

 

[jen54]

my mum and dad were really set against me claiming AA for dad, they said they had saved all their life for illness and weren't scroungers..I had toexplain it was part of the pension rights, held back for such an event and that dad was entitled and it was for extras he may need, mum was still disgusted about it, but she soon forgot about it

I have just been tying to find out as much as I can, in case things get worse-now dads gone and mum is worse than we thought..she hasn't a clue, just says its stress and all the fuss when dad was ill and died , we havent got diagnosis yet..its hard when ,as anyone would be, she has been independent all her life and doesn't want to admit she needs help- she is getting better at letting us help- but have to be so careful, keep it lighthearted etc..or she does get her backup and say she isn't over the hill yet and quite capable and is very stubborn - not sure there is a way you do it if someone doesn't want the help-?? not until they are past the stage of being sure they are ok ..but not being OK -I really don't know if mum would ever let carers look after her

 

[Dustycat]

Hi Dave. My parents were in the same situation as yours ie Dad caring for Mam. We had similar issues but the disease dictated the pace and help was eventually initiated and accepted. Keep a close eye on your Dad. My Dad went on to also develop dementia. The consultant reckoned looking after Mam wasn't a direct influence on him developing the disease but we believe it didn't help. Good luck. X

 

[Dave66]

Hi Suzy.
Thanks for your reply.
I am in the process of gathering as much information as I can about local Memory Cafe's, Day Care etc, etc for the "just in case" situation(s)
I have the POA forms, but due to the fact that the AA hasn't been completed, I feel like it's best to take it one form at a time.

Hi CJW
Thanks for your reply.
My better half has a very invaluable few hours with my Mam once a week, to give Dad a "break". Mam enjoys this, but wont even consider my BH doing any washing/ironing/cleaning etc for her and Dad!!!
My Dad is very keen to move closer to us, I take this as a sign that he is open to additional help from us, as I know that he is struggling with it all, (he can't leave Mam alone for more than a few minutes at a time now). It is Mam that doesn't want to move, the whole family are behind the move and we all agree on the benefits of it, obviously taking into account any adverse effect this move may have on Mam, it is the most appropriate and sensible short and long term solution to what will inevitably become a more trying, testing and emotional time for all concerned.

Hi jen54
Thanks for your reply.
I can relate so much to what you said and I wish you and your Mum all the very best.

Hi Dustycat
Thanks for the reply.
Dad is a big concern for me (us). He has his own health problems, but fortunately at the moment he has everything about him mentally, all though I do feel that at any time the weight of it all could cause him to have a breakdown! He has always been stubborn and as the years have passed this really hasn't abated, so he does tend to make somethings a little difficult for us at times, but there are some glimmers of light!

Open question. Should we have the POA completed first (ASAP) for Mam?

 

[1954]

I think the sooner the better with POA