Diagnosis

kim51

Registered User
Apr 23, 2013
4
0
Hertfordshire
:( Well after 18 months we finnally got the results of my dads brain scan and they have confirmed Alzhimers with LBD... Although my mum and I knew it had to be something like this I cant tell u how much of a shock hearing those words from th Consultant was for us both... My mum cares for him 24/7 and they are both in thier 70's up till now I have not been able to get any help from anyone... I live 90 miles away and have managed to get careline put in and I pay for this, I have bought a walking frame for dad, taken doors off and put slidding doors on so he cant get locked in bathroom, I have tried endlessly to get information for some help for my mum I even had to buy a wheelchair for her to take my dad out. I can't believe there is no financail help or support that they can get to make life a little easier for them. The Consutant has reffered my dad to the dementia team and I'm not sure if this is something they will do or if people have to find out for themselves? I am worn out lol... Im sure if I can get them a little help finaically it would lift my mums spirit. We were told yesterday that dad is medium stage but goodnees knows what that means, all I know he is getting worse daily he doesnt eat cant hold a conversation falls often, and I just want to enable my mum to care for him at home with some assistance but i'm struggling to get my head round all this can anyone give me some advice please?? :confused: I simply feel lost and unable to make things better for mum and dad. I guess I have spent too much time and effort into the practical things I didnt think just how much my dads condition would tear me up... I dont let mum see as she is happy tocare for dad when I stay positive and tell her she doing well when inside I'm falling apartas I'm losing my da( gosh this sounds so selfish!) i need topull myself together lol xx thanks for listening P.S i'm really not a selfish person I just feel so alone s this normal
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,802
0
Kent
Hello Kim

On the practical side it might help you to read a couple of the AS Factsheets.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=113

On the emotional side, welcome to talking point you are in good company.

I`m sure we have all experienced emotions similar to the ones you`ve expressed and I do hope you will get the support and information you need.

Caring from a distance is another complication and I think you`re marvellous, already putting things in place and trying to get as much practical help and support as possible for your parents.

There is nothing selfish is asking how this diagnosis affects you but you do not need to be too strong for your mother. I`m sure she would appreciate it to know you are as upset about this as she is.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
You don't sound selfish: it sounds as if your parents are very fortunate to have your support and concern.

Our son makes all the difference to my husband and my situation. And only the other day he got openly upset about how he misses his dad, how his dad may be alive but he is no longer there and , although I was sad for him, I was also glad that he was able to say those things and be upset and we were sad together.

You make things better just by being there, you know.
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Gosh, Kim, your post does not come across as selfish at all, not one little bit. I am also devastated at losing the strong, feisty, loving and totally reliable parent that my mam used to be. It has hit me very hard, and also watching my dad making himself ill with his determination to care for her himself at home with as little help as possible has given me many emotional problems. You are not alone.

On a practical level, there may be financial help available, depending on your dad's personal circumstances, in the form of attendance allowance, carer's allowence, council tax reduction, etc. You need to get both your dad and your mum assessed, separately, to see what is available to them. Your dad is entitled to an assessment of his own needs, and your mum is, too, as a carer. You do this, I believe, by contacting Social Services and getting them on board.

Good luck, and do please let us know how you get on. I am sure people with more experience than me will be along shortly with other ideas to add to those already given by the other posters.

Remember to take care of yourself, too.

Xx
 
Last edited:

kim51

Registered User
Apr 23, 2013
4
0
Hertfordshire
How can things progress so fast???

:confused:Its only been a couple of weeks since we got my dads diagnosis, yet he seems to be getting worse daily, my mum struggles to get dad up and back into bed he falls regularly, I knew things would get bad but really thought it wou;d be over years not weeks... sometimes I think dad will get over this like its some kind of illness that you will get better from after a few months... I miss my dad, I feel so vulenerable and scared for my mum and dad and really feel helpless.. I am trying to get cares to go in to help mum get dad in and out of bed as he falls and he cant get up and mum cant lift him and no family around to help. I hate this illness it is stealing my dads past... present and future and I feel for my mum they have always worked hard and these should be the best years they have together after retiring last year from fostering.. I suppose I'm lucky dad still knows who I am and mum I really dont want to think he will forget me or mum... thanks for listerning Rant over! :eek:
 

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