Worries for the future

[Kastoff]

Hi all,

I'm Kathryn, I'm 22, I'm new to the forum, have never done this before (so genuine apologies for the lack of awareness of how to write on these things).

Basically, my dad was diagnosed with Alzheimer's in December of last year following a few years of worsening memory problems. He's 58 which is obviously not a totally rare age to get Alzheimer's disease, but still devastating as you can imagine.
To be honest, I'm not really coping with it but that's not why I'm here - it's not about me, I just really want to be there for my mum and dad.

The reason I came upon this website, and this forum, is that I'm worried about my mum and dad's future. My sister and I have always dreamed of one day buying them a property somewhere sunny where they can escape to, but since this diagnosis it has become increasingly apparent that this will never happen. My mum is doing her absolute utmost to pretend everything is fine, but when she and I sit down and chat together, the truth comes out about how many times dad asked the same questions/odd things he's done during the day/his general confusion. It really makes me so sad, and i wish there was something i could do to make their lives better.

I was just wondering if anyone had any comments on what they would like their children to act, or if there was anything they wished their children would understand about their diagnosis.

Any help/advice would be greatly appreciated. Thanks.

 

[Grannie G]

Hello Kathryn

First of all please do not worry about the rights and wrongs of posting on Talking Point. You are doing everything right.

And you are doing right by your parents too, by being there for your mother to talk to and by being so concerned about both parents.

Please let Talking Point support you. Keep posting. There will always be someone here for you.

 

[Tolkny]

I was just wondering if anyone had any comments on what they would like their children to act, or if there was anything they wished their children would understand about their diagnosis.

Any help/advice would be greatly appreciated. Thanks.

I reckon that understanding about the condition helps because then one is able to offer appropriate support.

I got a lot of help and information from my local branch of The Alzheimer Society who run awareness courses for those discovering a reli has dementia.

 

[Izzy]

Hi and welcome Kastoff. I'm so sorry to read about your dad's diagnosis, it must be devastating for you all. I think you attitude will mean that you will be a great support for both of your parents. Just being there for them will mean so much. You will get answers to questions here on TP and in turn will be able to pass on knowledge to you mum. Would she consider joining up? Take care. x

 

[BeckyJan]

Hello Kathryn:
Welcome to TP sad though it is that you need to be here.

I am full of admiration as you remind me so much of my eldest daughter who talked to me through the early stages of my husband/her Dad's illness. We have spoken since how much closer we have become with sharing our thoughts and feelings.

My own advice is to stay with them through thick and thin, still loving your Father despite what the disease may do to him. I do not expect anything of our daughters but I value their sincerity and love and the certainty that they are there to support me and their Dad whatever.

I wonder if these factsheets will be of interest to you:

http://alzheimers.org.uk/Caring_for_someone_with_dementia/

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=84

I do hope the Forum is helpful to you.
Best wishes

 

[kerrykettle]

hi

hi Kathryn, ive only just found this website to, and the people on here are so caring and understand what people are going through, im so sorry to hear about your father, dementia is a nasty illness, but hope you continue to post on here, as they are all a lovely bunch, take care xx

 

[Kastoff]

Thanks everyone

Thanks very much to all of you for your kind hello's and words of advice - very much appreciated.

My plan is to be there as much as possible for my mum and dad, and look after dad whenever possible to give mum as much "respite" (what a word, such horrible connotations, but i can't think of another) when I can.

A concern is that i have my final exams this year (with a crazy amount of studying required..eek!), graduating next June and after that I will begin a hectic job with long hours, on-call and nightshift, which may or may not be in an area close to my parents (I currently live at home). This will mean I won't get to help out as much as I'd like, and it worries me.

I'm sure other people have asked this already, but is there any kind of carer support/respite services available for people with Alzheimer's? It's not necessarily the time to use these services at present, but i'm trying to plan ahead so that I can make sure my mum and dad get all the support they can whilst i'm not there.

Thanks all, and thanks again for your warm welcomes

 

[small]

Hi Kastof

I,m no expert as I'm only finding my way myself. My husband is 62 and just diagnosed with Alzheimers. This site is full of useful info. The Alszheimers website has lots of information sheets on just about every question you are likely to have, but Local Authority Social Services also give various info on services available in your parents' area. If your mum would like to read or access this site {TP], I got loads of info from old posts and following links in posts to various information sites.

One big thing your mum will want more than anything else is that you give sufficient time to your studies and your own young life, You mum and dad love you and want the best for you at your age, just as they did when they were younger. The very best of luck in all aspects of life for you and your family.

Fond regards Jackie

 

[DeborahBlythe]

I'm sure other people have asked this already, but is there any kind of carer support/respite services available for people with Alzheimer's? It's not necessarily the time to use these services at present, but i'm trying to plan ahead so that I can make sure my mum and dad get all the support they can whilst i'm not there.

Thanks all, and thanks again for your warm welcomes

Hello Kathryn, welcome to Talking Point from me too.

You could access services in a few different ways. You could locate the nearest Alzheimer's Society Local Service to where your parents live. http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200121

Or you could ring up Social Services (or your parents' GP) and ask for their help. I strongly recommend that you think about a community care assessment for your father because this is the formal route by which your father is recognised within 'the system' and will have his needs assessed. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

Your mother will also be entitled to have a separate Carer's Assessment of her own. (see the same factsheet)

I know this sounds a bit scary but it will put your father into a process which should bring about some support when it is needed.

I hope this is helpful. Please keep posting. Everyone on TP will want to help you and your family.

 

[seaurchin]

Hello Kathryn,

I am so sorry to hear of your father's illness.

From reading your posts you sound as though you are a credit to your parents. My step-daughter is in her early twenties and is wonderful with her father. She is patient, tolerant and kind whenever she is in his company. She supports her dad in a tactful way without undermining his remaining abilities which I think is so important to her father's self-esteem.

She has just managed to graduate with a good degree and is now embarking on her career path. This is what her father would have wanted and I am sure your father would want the same for you.

For us my step-daughter's love and understanding of her father's illness are worth their weight in gold especially as so many friends and family have fallen away. I hope that you are able to provide support to your parents but also continue with building your future too.

Good luck with your studies and future career.

Kindest wishes

Helen