my dad.

[climb_mountains]

I want to start by saying thankyou for taking the time to read this thread. there are so many heartbreaking threads here and the fact that you have taken time to read this one humbles me beyond words.

this post will probably be a ramble- i appologise for the lack of structure. i really need to vent as i find it so hard to discuss these issues with my friends and other family members. when i talk with friends i always block things out with humour, yet when im on my own i cry and cry. somehow writing things down seems so much easier.

my dad, 56, was diagnosed with alzheimers two days ago. he had been gradually been declining over the past 2 years and the change in him is heartbreaking. there is one thing thats bitter sweet in the sense that my dad doesnt seem to know that anythngs wrong- he was diagnosed on friday the 19th and on the 20th he had no recollection of any diagnosis.

i'm in my first year at university and living three/four hours away from home in term time. i feel so guilty for not being home to help; needless to say my dad cant work any more, and my mum has switched to working at home and will soon have to go part time. financial situations are difficult. i cant think of any justifiable reasons to continue at university where i am an extra burden, when i could be helping at home financially, emotionally and physically.

i hope this hasnt come across selfish and self absorbed. i love my dad more than i can put across in words and i know this is about him much more than it should be myself.

thankyou for reading this. my thoughts are with all of you

-tony.

 

[Grannie G]

Hello Tony

I am so sorry you have had such dreadful news to deal with at such a young age. As the diagnosis is so new you will still be in shock however much you might have expected it, so it is very important you don`t make any life changing decisions just yet.

It would be tragic if you had to give up University to help out at home. Please consider it very carefully and discuss it with your mother and personal tutor first.

Visit Talking Point [TP] as often as you can. There is support for you here and people who understand. There are also quite a few members who are your age group and in your position.

And remember the Alzheimers Society Helpline is there for you too.

 

[seaside]

Dear Tony,

I am so sorry to hear about your dad. I hope you will permit me to write as a mum of a university student to say that if it was me in your dad's situation I would want you to go on with your studies, work hard, enjoy your time at Uni and get your degree. Obviously I cannot know what your Dad would want if he was in full health but I bet he would be proud that you have made it to University and would want you to continue.

This is such a cruel disease and it does put horrible pressures on families. This forum is such a help.

best wishes

 

[Lynne]

Hi Tony

My sympathies also, to the whole family. As you have found, Alzheimer's sufferers often seem to have a blind spot as regards being affected. Whilst this may seem a mercy so far as they are concerned, it often makes it even harder for families & carers.

Having said that, my sympathy doesn't help in many practical senses so I'll make a few suggestions (which you/Mum may already have done) with an eye to the financial situation arising from Dad's AD.

Has Mum applied for Carer's allowance for herself? There are 2 rates; when you fill in forms, don't try to minimise Dad's needs, paint a worst case scenario.
24/7 care is HARD WORK, certainly emotionally and often physically as well. Just because she is his wife, it doesn't have to be unpaid.
Even if she is still working, in or out of the family home, she is entitled to claim.

Has someone applied, on Dad's behalf, for Attendance Allowance.
Same comments about 'telling it like it really is' apply.

Have you contacted the local Alzheimer's Society support group?
They can often help with form filling (as above) and advice about what help is available locally. Age Concern, Help the Aged and the Citizen's advice bureau may also be able to assist if they are easier to access (although the first 2 may not be appropriate as your Dad is early-onset so far as age is concerned).

Please come back with any questions which may arise; there is a huge amount of practical experience here, & many problems have been encountered before. Whilst we may not necessarily have "answers", coping strategies can help defuse difficulties.

Can you introduce Mum to TP if she uses a computer? We can help reduce the feelings of isolation and give her an outlet for her feelings, distress or frustration, as well as sound practical advice based on knowledge of what it is like for a family carer (as opposed to the 'professional' advice from someone who may see Dad for only a few minutes, when he's on his best behaviour).

Best wishes

 

[Margaret W]

Hi Tony,

Well I am not very good at the emotional aspects, but I have just lost my mum to Alzheimers, and I have two daughters in their 20s, and NOBODY would have ever wanted them to give up their University Studies as a result. So please don't do that.

Keep going, my friend, it is what everyone would want you to do. Make sure your tutors know the situation, but above all keep going. That is what your Dad would want. Work hard at your degree, after all it is what your parents would have hope for, and achieve the best you can. For your mum and dad, and for yourself.

Love

Margaret

 

[Helen33]

Dear Tony

First of all Welcome to Talking Point. I hope you find it a source of help and support.

hope this hasnt come across selfish and self absorbed. i love my dad more than i can put across in words and i know this is about him much more than it should be myself.

You do not come across like this at all. Talking Point is just such a place to safely share our experiences and, hopefully, find support from people in similar situations - it is for you - it can be about yourself

it is very important you don`t make any life changing decisions just yet.

I too think you should not make any hasty decisions Tony.

I wish you well and send Christmas Greetings.

 

[robertjohnmills]

Your Dad

Well done Tony. You sound brave and strong with a deep attachment to your Dad and he must be so proud to have such an intelligent, caring and sensitive son. It's more than ok and quite commendable for you to give vent to all your feelings; sorrow, anger and greif, in a place where you feel you can, such as this at TP. You always have the assurance that everyone of us knows something of what you are experiencing and losing a loved one to Dementia is the longest goodbye and the hardest of all in life. As rough as it gets, your Dad needs you to make the most mature decisions ever and you will always be welcome to ask for advice from me, others here or the resources provided. Good Luck and I wish you all a Happy Christmas

 

[climb_mountains]

Sylvia, seaside, Lynne, Helen, Margaret and Robert- thank you so much for your words of advice and sympathy.

your advice is so greatly appreciated. it's so hard to be level headed right now as i'm sure you can relate to.

Margaret, my deepest sypathies to you and your family for the recent passing of your mother.

Thank you all once again. I will definately be about here often, everyone seems so loving and heartwarming. It really is humbling.

A Merry Christmas to you all.

Gratefully, Tony

 

[jacqueline100]

Hi Tony,

I have just read your post, and like the others I think you should try and finish your degree. Seeing your dad ill is very upsetting but if all was well I am sure he would not want you to give up your chance of a career. Try and talk to your university and see if they cane give you any extra help with money if that is a problem there are often grants available.

I hope you have had a good xmas and wish you and your family kind wishes for the new year

regards
Jacquie

 

[climb_mountains]

thank you everyone again-i feel the least i could do is write a little update after all your words of support.
I'm back at uni now and although it's hard to deal with, I think it's the right thing to do. I'm out on work placement for my course in a primary school in year 5. as difficult as it is being far from dad, I think I'm making a positive effect on the children I'm teaching which helps me to look at a bigger picture.
I don't know how I'd cope if it wasn't for this outlet.

My mum sent me some new pictures to celebrate the welcoming of a new family member, well, not quite; has 'adopted' a beagle-jack Russell to help keep my dad some extra company and responsibility back into his life. Realistically my dad won't really be able to take care of him too well but with my mum working from home, she is more than able- plus I think the companionship is will be great for her. My dad's in one of the photos and its so tough seeing him look like this way- in just 2 years he looks almost skeletal.
I think weight loss is a normal thing to expect but seeing him at under 9stone is awful. is this normal do you know? it's what i saw in my nan and grandad [his parents] but not until they were in their 70's- he's 56. is there any way to help with putting on weight just for general physical health? Am i hoping for too much?

Wow this has once again turned to a ramble. Best to stop here I think!

Thank you all again- I truly hope the new year brings you all new hope.
Tony

 

[Skye]

Hi Tony

Thank you for the update. I'm glad you've gone back to uni. You have your whole future to think of, and I'm sure your mum and dad would both want you to continue your studies.

The dog's a good idea. I bought a Westie pup when My husband was still fit. I thought I'd made a mistake in the early stages, John couldn't bear Skye round his ankles. But once she had got past that stage, he loved her and loved to take her for walks.

Now John's in a home, I couldn't imagine being without Skye, she's cuddled up beside me on my chair at present, as she is most evenings.

John never lost weight, and still hasn't, though he's been immobile for a year. But most people do, some of the residents are emaciated. I don't know what your mum can do about it apart from try to ensure your dad has a balanced diet. If she's seriously worried, she could ask the doctor if food supplemens are necessary. But as long as your dad's healthy, I wouldn't worry.

Good luck with the studies. I was a teacher, and I loved it!

 

[Martyn_R]

Stay strong dear friend. This forum is here if you ever need to let others know how you are feeling. I find I can be strong one day, but be so emotional the next. I felt it was so helpful to hear advise from others who are in similar situations.

Good luck in Uni.

Martyn