future is bleak...

Jane1

Registered User
Mar 3, 2007
54
Leicestershire
Dads brain scan was 3 weeks ago and my sister and i went to see his consultant today for the results. he confirmed AZ and confirmed that he's only going to get worse and that it's too late for medication to make a difference to him, ( he's keeping him on his sulpride and anti-depressent for the time being). He also said we should change his respite status to permanent as he seems, on the whole, to have settled at the home and not consider a move to elsewhere. He told us dad is probably late middle to early severe stages at present and mums death several weeks ago and all the other changes he's had to cope with has probably made his condition worse, alot faster. All this we knew, but still it's so painful to hear it and know that there is no light for dad anymore. I'm trying to stay strong and positive but when i look at him i want to cry for the dad i'm losing before my eyes. The visits get harder each time i go and i don't think i will ever get just get used to it. We are going to personalise his room more now for him and try to help him understand that there is home now. A few of the other residents frighten him sometimes and it's hard to encourage him to want to be there as it's probably the last place i'd want to be.....
Thank you once again for listening xx
 

cariad

Registered User
Sep 29, 2007
89
Hi Jane, your words echo my feelings. My dad died in Aug and my mam is living with me now. It really is so hard to see someone you love slowly fade away. My mam has dementia (going for an MRI tomorrow) and she too has declined since Dad's death. I think I will get my head around it but often feel that my world is collapsing. Every day brings a new realisation. Yesterday my mam didn't recognise her self in photos. I kid myself that she is better than she is and I cling on to the things that she still can do/ enjoy. This site is great for advice, support, friends and sometimes just to be able to 'say' how you feel to people who have been there/ are there. I wish you all the best, Berni x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,643
Kent
I`m so sorry Jane. Even when the expected diagnosis comes, it`s still a shock.

I don`t think any of us get used to it, some accept it, some fight it, some deny it and it makes some bitter, but no-one gets used to it.

In a way, I`m pleased for your father`s sake that he has settled where he is and you won`t need to uproot him again.

I hope you will allow those of us on TP to support you as much as we can.

Take care

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Dear Jane, I'm sorry you're feeling so sad. The conformation of what you already feared is still a shock.

But your dad is settled in his NH, and you are going to make his room more homely for him.

The future is not all bleak. You will be able to visit your dad and know that he is being well looked after.

I feel so sad when I visiy my husband in his NH, but I know i could not care for him as well as the staff can, and I try to make my visits happy.

There will still be good days for you, try to enjoy them, and store them in your memory.

Love,
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I'm trying to stay strong and positive but when i look at him i want to cry for the dad i'm losing before my eyes. The visits get harder each time i go and i don't think i will ever get just get used to it
Even thought my mother live with me , 5 year now with AZ 5 years after dad died , its like grief you never got over losing them always miss them , never get use to it them not being around . you just learn to live with it. for me , same with AZ you just learn how to live with it , seeing parts mum memory disappear before my very eyes , still gets me down , but now I am recognizing it , just except that know matter how prepared for what ever stage come along , I'll always cry am still learning , but I can't learn not to cry , what I have learn about crying better out then in ...TP great help also .

Just because you cry a river of tears , does not mean that your not positive , strong you just care , that what I have learn .
 
Last edited:

Taffy

Registered User
Apr 15, 2007
1,314
Dear Jane,
Your sadness is clear and I am sorry that you have to go through all of this.
I know how hard and difficult this miserable disease is to cope with, but the reality is, the time comes when most sufferers will need this level of care.
I hope that things become easier for you. Take Care Taffy.
 

Trich

Registered User
Aug 16, 2007
31
France
Hi Jane,
I read your post and it could be me writing it.
I would just say to your words "there is no light for dad anymore" that the light for your dad is your love and visits to him and the light for you is the precious moments when you see your old dad for a moment. I am not able to be with my dad as much as I would like as I am a long distance carer so cherish the time you have however hard it is.
Keep stong,
Trich
 

Jane1

Registered User
Mar 3, 2007
54
Leicestershire
Thanks for your replies, they always help. I have to say I took dad to a cafe the other day for a coffee and a scone and as i buttered it for him, talking to him all the time, he looked up at me and said 'i love you'. A moment to treasure......:)
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Jane1 said:
he looked up at me and said 'i love you'. A moment to treasure......:)
Definitely one to treasure, Jane. I'll never forget when John struggled to say that to me, jus a few weeks ago, and you'll never forget it either.

You deserve it.:)

Love,
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
!

Jane, your dad is not lost yet, he may have many years of happy life, and so may you when he turns to you and says "I love you", and I am still mopping up my tears after reading that. (pause for tissue).

My mum doesn't say things about love, but I learnt for the first time in my 56 years that she was proud of me! That came as a surprise from a nurse.

So, we have to remember our parents are still people, we can still learn from them, still get pleasure from them.

Oh, ain't it hard?

Love

Margaret
 

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