Need someone to point me in the direction of info :)

[Hayley Thomas]

Hi everyone

I hope you don't mind me posting here (I am not a carer personally) but I am doing a project in University and part of it is to put myself in the place of a carer of someone who has been diagnosed with Alzheimer's and try to understand what it's like, how I'd feel and how my life will change to suit being a carer. I hope and pray that no-one thinks of this as insensitive in the slightest i.e. me posting but not actually going through it myself. It's just that I am only 21 and no-one in my family has yet been diagnosed with dementia so I have no experience about what things I'd have to do if, for example, my dad was diagnosed. I know I can't imagine the emotions I'd go through, and that you don't know until it happens and just hope no-one thinks I'm heartless!

I appreciate any pointers

Thank you in advance

 

[Grommit]

Hayley Thomas I am sorry but my personal opinion is that I think the questions you are posing in your post are really far too big to be answered easily.

I would find it very difficult to find the right words and expressions that would fit you into a carers role.

What most carers are going through is beyond description by mere words.

There is, however, a single word that sums it up - LOVE.

 

[jenniferpa]

Hayley - I think you'll be best served by reading some of the threads, particularly those from people who have parents or spouses that have been newly diagnosed. I would suggest searching using key words such as "newly diagnosed" and "in denial"

P.S. The fact sheets on the main AS site will give you information about practical matters that confront new and not so new carers.

 

[Grannie G]

Hayley,

I have moved your Thread into the Research Section.

Have you considered doing voluntary work in a dementia unit? I feel you would get more insight into the lives of carers if you undertook a `hands on` role instead of relying on hearing about caring second hand.

Please don`t think I`m being rude, but your request is a bit like walking with your eyes closed, pretending to be blind.

 

[Skye]

Hayley, I think you may get some insight into emotions if you read some of the longer-running threads. For example, Grannie G's thread 'A life in the day of...', Connie's 'Update on Lionel', my own 'Worried about John'.

These are all about caring for a spouse in the middle to late stages.

If you want to read about caring for a parent, try Sue38's threads, or Mameeskye, or alfjess, who is caring for two parents with AD.

If you want reactions to first diagnosis, and the problems facing a new carer, they will be shorter threads, and there are plenty to choose from on this forum. That might be a better starting point, but you should also read the others.

Good luck,

 

[ishard]

Haley there is one emotion that hasnt been discussed much on here when a person finally realises that they are a carer and it affected me badly for a good few months.

I grieved for my own life, for my lost career, my lost opportunities, my lost freedom. I cried for the workload I was taking on. I cried because as I saw it my life was over.

I tried hard to find ways to get someone else to care on a day to day basis so I would not have to give up my life.

Obviously my life isnt over and we do find ways to adjust but sometimes, just sometimes, I miss my 'old' life.

 

[ishard]

PS Maybe this affected me more because I knew from day 1 what was involved with an person with AD because I was a nurse and had seen it.

I think that most carers are lead along the road in ignorance of AD with their family member, so they take the role on in small steps as the disease progresses and dont understand/see how demanding it can get from the start.

Perhaps its a case of 'too much knowledge is a bad thing'.

 

[hendy]

Hi Hayley
Grannie G's suggestion is a really good sound idea. Can I just also add that when I visit my Dad its only about three times a week, I wished I could go more... The patients on the ward(Assessment Unit) are all poorly, but i see few visitors when I go and it is really sad. I'm almost certain that there are some patients who have no visitors at all. Or sometimes visitors who don't know what to say.. I try to chat to them too if I can. Its hard for someone to visit if you dont know what to expect (really expect anything). If you decide to go ahead.. check out the thread 'what to do when visiting' to give you some ideas.
I wish you well in your studies and keep reading the posts.
take care
hendy