Help with the early stages

[Sara M]

After looking at TP many times, and losing my nerve at posting something , I have taken the plunge!

I need advice. My mother was diagnosed with AZ a few months and the whole family are still reeling from the diagnosis. My father is also suffering with pre-existing anxiety and depression, and is also the mum's main carer.

Mum is now at home with dad, but I can just see the whole situation just sliding towards disaster and I feel so unable to stop it. My siblings and I have small children, work significant part time hours and don't live close to our parents and just don't know what to.

The whole situation at home is so unsatisfactory - mum can't drive and because of both her and my fathers depression they have both become very isolated from any friends. I don't even know who their friends are anymore so although I have called a couple of people who I know mum used to see, explained the situation and asked whether they could make an effort to see her - pop in/take her out etc, it is all very contrived ( and so far nothing has materialised in terms of visits etc). They stay at home most of the time and see noone, do nothing (they didn't do much together pre -diagnosis). The only time mum gets out is if my sister or I do something with her. Family wise that is it so very few to spread the burden. Suggestions to Dad (who drives) fall on deaf ears.

I have spoken to the local AZ support worker - she is lovely and has tried to talk to dad about help etc, but he politely declines and tells her that he'll ring if they need anything.

My question is what have other people found helpful in trying to get help. At the moment mum is Ok, although the last three days and nights have been bad.

Dad is not coping - he is in a bad way himself without dealing with mum's AZ, but I just feel so guilty/anxious about the situation. It is on my mind from the moment I wake up until I go to bed and it is exhausting. Dad says that he can cope with it, but he can't isn't. We need someone to come in maybe 4 or 5 mornings a week and be a companion/driver type person to at least free dad up.

The trouble is that it has to be a certain type of person.... mum and dad are very particular types of people, and of we don't get the right person, it will create more problems than it solves. Some people have suggested volunteers or even advertising in The Lady magazine. What have people found useful? Day centres etc seem aimed at people who are much older than mum and would be inappropriate - mum is also very shy and would be really unsettled by it all.

Sorry to ramble - just not coping with it all.

Any help or advice gratefully received and I promise not to whine next time.
X

 

[Margarita]

Glad you took that step to post , welcome to TP

I know how hard it is in the early stages , in parents expecting the help .

a befriended sounds like a good idea , but would your mother except the help .

Have you spoken to social services , as they can get a paid person to come in to take your mother out .

someone I am sure will come up with some more advice soon I'M sure

I promise not to whine next time

your not whining , just caring xx

 

[Grannie G]

Dear sara, don`t ever be nervous about posting on TP. That`s what it`s here for, and everyone`s a friend.

I don`t know how to help with your problem though, if your parents are so particular about allowing outside help. Believe me, this is not a criticism, as my husband is just the same, but he has me.

All I can suggest is you talk to their GP and Social Services to see what help is available for them. Once you have found that out, then perhaps you can talk to your mother, as she seems the more approachable parent.

Really, your mother is at risk, if your father is giving her alcohol and a sleeping tablet. I suggest when he next phones you in the early hours you tell him he must get some outside help.

I know it`s easier said than done, but now is the time for you forget the conditioning that has made you behave as their child, as they are no longer able to be responsible adults.

Take care xx

 

[sheena]

Hi Sara M
Sorry to hear about your situation but know exactly how you feel - when my husband was diagnosed about 14 months ago it hit home hard. He had been in hospital for 9 weeks before they with a SPECT scan (my understanding of this is that it is a very detailed MRI scan which splices the picture of the brain into very detailed segments) the consultant confirmed - as best he could- a diagnosis of AD - within 10 minutes my husband was out of the ward and we were on our way home - with absolutely no information whatsoever about AD - he was 62 then. I spent the next few weeks reading on the internet for hours, phoning up local Alzheimer's centres, just trying to find out what I could - and to be honest a lot of it wasn't to do with the disease - but just how on earth were we going to manage - was he going to have to stop work, stop driving - how were we going to manage financially - all the basic things we are now getting there with the day to day things - AD is a completely different matter.
Our G.P. was very good and gave what information he could and with regards to my husbands care he would just phone to see how he was getting on.
Anyway that's a bit of our background but not sure if I can be of any help to you however because of your parents circumstances I think Social Services would be a start and another place I was advised to contact and who were exceptionally helpful especially with regard to filling in forms for allowances etc was the Citizen's Advice Bureau - the gentleman there was very good - managing to get financial help e.g. Disability Living Allowance (DLA) or similar for your parents may then help to fund people who may need to help you out practically
Don't give up on TP - I have only been posting for about a week now - took me a while to get started - now I can't stop - it is so good to have people who know exactly what you are talking about - keep posting
Thinking about you and your family
Sheena