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Denial?

annesharlie

Registered User
Apr 10, 2007
80
Vancouver Island, Canada
Hi all.
I've found myself being absolutely sure, in these last days, that Ron will just more or less stay the same as he is now, I can't conceive of the notion that he's going to get worse. This, dispite a diagnosis of Fronto-Temporal dementia. I am just thinking maybe he didn't exercise his brain enough, has become lazy with it, and if he applied himself more it would improve - and there's no possible way that he's actually going to die from this.

Have any of the rest of you gone through this? It's like I can't actually face the reality of the situation just yet. He is so young and very healthy otherwise.

Anne
 

angela.robinson

Registered User
Dec 27, 2004
520
78
hi anne .
yes i think many off us here have believed that it would get no worse , and indeed ,i made the most off the the first few years , taking holidays whenever we could, taking it as early retirement , , money was not exactly plentyfull but with one daughter living abroad , we did not do too bad ,i was told by the doctors that he could go in 5 or 15 yrs , and some would live 25 yr ,!!!!!!the average being 7 ,i really believed that the 25 yrs would be the one for JIM WHO WAS AT THAT TIME 55. .however that was not the case for him , all i can say is dont think too far ahead , except financialy , that is important , as for the rest , enjoy your time now as best you can . store up good memorys for the future . i know this does not really help you but just to let you know your not alone in the what your thinking , it takes time for the reality to sink in ,TAKE CARE AND STAY STRONG ,
ANGELA.XX
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Yes I have felt that feeling of denial; it felt better then facing up to the emotion of the reality of it, make one feel safe .

It does did feel good to be in denial, I just don’t want to say anything wrong to hurt your feeling , just to let you know I also felt my mother was just being lazy also , keep trying every thing to motivate him , it is a slow progression , no its not easy for me to say enjoy your now present moments with him , for the future is unknown , as death come to us all in one way or another , horrible sad that your husband is so young .
 

Amy

Registered User
Jan 4, 2006
3,454
Hiya Anne ,
Yes I have been there too with my mum. In the early days trying to make her remember things, answer questions, knit, sew. Even now, when she is in advanced stages, I still find myself looking for glimmers of hope - that smile, was it that she recognised me? Was that "Always" that she managed to repeat?

Anne, live each day - for who knows what tomorrow holds for any of us - you will adjust, as and when you need to.
Love Helen
 

jackie711

Registered User
Apr 12, 2007
9
north east uk
Hi Anne,
I sympathise with you as my mum was diagnosed late last year at the age of 59. My husband thinks I am in denial, maybe I am. However as I see Mum most days, I see very little change in her and can't comprehend that it's possible to deteriorate so rapidly. In my attempt to stay positive and try to get mum to be more active,other's see it as denial? I, like you, don't have the answers, just hope.
much love, jackie
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
I would think denial is a common reaction to a loved one being diagnosed with a serious illness. Many people go through a process that is very similar to the grieving process - indeed you are grieving for the loss of their former health. I can't honestly say that I experienced feelings of denial over my mum's dementia. That may partly be due to the fact that there was a very gradual realisation that something was wrong. I can't even remember the first time a medic actually said she had dementia - so maybe I am in denial after all!

However, my son was diagnosed with type one diabetes three years ago and I definitely went through the whole spectrum of the grieving process then. Different circumstances, different illness but probably a very similar reaction. Denial was very much part of the early phase of that grieving process.

Brenda
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I would echo Brenda's sentiments. I think, to be honest, it would be surprising if there wasn't an element of denial. When my mother first had her strokes, I really thought that with work she would be able to regain some of her impaired faculties (hey, some people do, I wan't completely clutching at straws) but it wasn't to be. It took me sometime before I could come to terms with the fact that my mother's intellectual abilities had taken a real beating and weren't coming back. I think it's one's minds way of allowing one to cope: if you could really take it all in at once, you'd fall into a pit of depression you'd never crawl out of.

Love

Jennifer
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,762
Kent
Hi Anne,

I`m sure the feelings of denial you have just now are because you are still in shock, since diagnosis, even though your husband must have been showing signs, for him to seek advice.

When my husband was diagnosed, I felt sure, for a while, it was really depression, and when the Aricept and Reminyl trials were unsuccessful, it justified those feelings. The Alzheimer drugs didn`t work for him, because he didn`t really have Alzheimers. That`s how I rationalized it to myself.

Your husband is very young, mine is older, so it makes it even more difficult for you.

We all face trauma in our own ways, we all have our own coping strategies. Be kind to yourself, as well as your husband. This will be your illness too. You will be unable to imagine the outcome, so don`t waste precious time trying to. Make the most of the good times you will still have together and although it may be a cliche, you do need to take `one day at a time`.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Grannie G said:
We all face trauma in our own ways, we all have our own coping strategies. Be kind to yourself, as well as your husband. This will be your illness too. You will be unable to imagine the outcome, so don`t waste precious time trying to. Make the most of the good times you will still have together and although it may be a cliche, you do need to take `one day at a time`.
Hi Anne

What excellent advice from Sylvia. You really have to enjoy what you have, for as long as you can.

The bad times will come, usually when you least expect them, and you will then be in the depths of despair. But you will have the satisfaction of knowing that you enjoyed each other while you could.

John was diagnosed seven years ago, and until a year ago. I can honestly say we enjoyed life. We went on holiday as often as possible, had trips out, joined groups. Then sudddenly last year everything changed -- actually when we were on a cruise -- and now life is hard, with new problems cropping up every day, it seems.

I don't think it's denial, I think it's making the most of what you have, for as long as you can.

Chin up, stay strong, and start making plans.

And keep posting, we want to know how you are getting on.

Love,
 

allylee

Registered User
Feb 28, 2005
180
57
west mids
Hi Anne,

I think denial figures very strongly and consistently with dementia, for both the sufferers and the carers.
Like you, in mums early days, I was convinced we could turn things around. I bought crossword books, knitting needles, anthing to stimulate her brain. Mum herself until a real downward spiral in the last few months, remained steadfastly in denial , I guess thats her way of coping.
Mums NH staff sat me down only last weekend and talked to me about the fact that they still believe Im in denial.I still try to do "normal" things with mum, they were spot on when they pointed out that things will never be "normal" for mum again, and not that I should stop trying, but I should stop hoping that mum will get any pleasure from the things I do.
Words of wisdom indeed and another step nearer acceptance if I can ever get there!
LOts of love to you both
Ally xx
 

daughter

Registered User
Mar 16, 2005
824
jackie711 said:
In my attempt to stay positive and try to get mum to be more active,other's see it as denial?
Perhaps it is called denial but I saw being positive around my Dad as part of my love for him and, apart from on my darkest days, I never have accepted that he had no recognition of my attempts.
allylee said:
but I should stop hoping that mum will get any pleasure from the things I do.
Sorry, but I could never accept this or I would have been devestated, something drove me on to entertain and try to bring some small joys to Dad's last years/months; and any response was better than none.

I remember one incident clearly, we were walking round the garden of Dad's NH and I picked a dandelion that had seeded, blowing it to disperse the seeds. Unfortunately they blew back and went over Dad's jumper. His look of disdain when he said "VERY nice" just had Mum and I in fits of (silent) giggles. :) Ok, perhaps I was also doing these things to help Mum and myself too but I knew the severity of Dad's illness - just had to do SOMETHING to try to reach him!!

Enjoy these days, anne, don't think too far ahead, take lots of photographs, aim for as many laughs as you can, make lots of memories - I have no regrets and I am so glad I did this while I could. Take care, love from Hazel.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,762
Kent
Dear Ally,

I don`t know about words of wisdom, and far be it for me to criticise hospital staff, but to say the following to anyone;

but I should stop hoping that mum will get any pleasure from the things I do.
is cruel, and possibly incorrect.

Of course there`s no harm in trying to give pleasure, at whatever stage. Who knows what`s behind the blankness. Even people in a coma are thought to have senses of hearing, smell, taste, touch and even sight, and we should never give up on them.

Acceptance is one thing, giving up on them is another. You are a lovely daughter, trying your very best for a mum you love dearly. No one should tell you to give up on her.

You do what feels right for you, and for mum.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
allylee said:
Mums NH staff sat me down only last weekend and talked to me about the fact that they still believe Im in denial.I still try to do "normal" things with mum, they were spot on when they pointed out that things will never be "normal" for mum again, and not that I should stop trying, but I should stop hoping that mum will get any pleasure from the things I do.
Words of wisdom indeed and another step nearer acceptance if I can ever get there!
Hi Ally


I'm afraid I'm with Sylvia and Hazel on this one. I think it's appalling that the NH staff should say such a thing to you. Certainly not 'words of wisdom'.:(


Perhaps they think you are in denial because you are hoping that your mum will get better? I'm afraid we all know that that won't happen, at least until someone finds a cure.

But there is no reason at all to assume that your mum is not finding pleasure in your visits, or the things you do for her.

Yes, you need to accept that your mum has a cruel illness that has at present no cure. But there are still moments to treasure for you, and pleasant, loving experiences for her.

Try to be positive, and make your visits as happy as possible for both of you. If you are unhappy, your mum will feel it.

You're doing a great job, just keep on, and ignore any negative comments.

Love,
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Try to be positive, and make your visits as happy as possible for both of you. If you are unhappy, your mum will feel it.
Just like to add, your so right when you say that hazel , that’s why in the past when I have felt so sad I hide in my room, other time when I can’t help it and have cried and given her a cuddly , mum asking me what wrong, (I don’t answer back) she has responded back and hugs me back, so I smile she smile back and all is forgotten.

It took me a long time to be positive and I suppose, if you don’t mind me adding like denial we all have a chose in how we want to feel .

feeling positive in my hear and now with my mother does feel a whole lot better for me , help me more in looking after mum .
 

allylee

Registered User
Feb 28, 2005
180
57
west mids
Thanks everyone for putting another perspective on things but I didnt view the NH staffs view as offensive at all. Perhaps I should have but vulnerablity does strange things to you!
Mum hasnt known who I am for some months now, neither is she aware of her surroundings. Mostly she is fretful and anxious.I I bring her to my home every Sunday for the day , trips to the garden centre in the week etc, and generally I take her back feeling wretched and end up crying.I try so hard to see some tiny glimspe that mums getting something out of it, but she views me as a stranger and everything around as something to be afraid of.
THe NH staff are always there for us when we return, cup of tea for mum and me and I think they do have my best interests at heart.Like you lovely bunch :)

Love to you all Ally xx
 

Gromit

Registered User
Apr 3, 2006
187
Edinburgh
Empathy if possible

Anne

I can empathise with the denial you are feeling. We have just found out that Dad has got Alzheimers (one week last wednesday) and although we knew something was wrong - (I used the help from TP to get Dad to the doctors its been a long slog - over 6 months of appointments and badgering authority) - I just don't think I have still admitted it to myself and find myself trying to think of things to do to improve Dad's memory - and that's all it is at the moment - a short term memory problem. So I empathise with your denial. However, it must be so difficult for you as this isn't your Dad but your husband and I imagine that must only add to the denial for you especially at such a young age (Dad was 69 when we noticed his problems). Though that isn't to say that this disease isn't horrible at any age - of course it is.

Use the advice on TP - I certainly am going to - I want to make sure I have as many great memories with my Dad as I can possibly build. Unfortunately we cannot know what the future holds and hard as it is for me to think that Dad may not know me in the future, - I am determined to continue enjoying being with him as often as I can (unfortunately I am in Scotland and parents are in Yorkshire - so not as often as I would like, currently monthly, but I am working on it!). So chin up, chest out, deep breath - all together with TP and we can do this!!!

All the very best to you Anne.

Love
Alison
x
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
allylee said:
THe NH staff are always there for us when we return, cup of tea for mum and me and I think they do have my best interests at heart.Like you lovely bunch :)

Hi Ally

Sorry if I upset you. I obviously didn't have the full picture.

I'm glad the NH staff are so friendly and helpful. If you trust what they say, than you have to go along with it.

Do they perhaps feel that your mum is too frail to enjoy your outings? They might be too tiring for her? Perhaps she is at the stage when all she needs is for you to spend time with her, talk to her, hold her hand and let her know you love her.

I don't know, Ally, and I don't want to upset you again. You know your mum best, and I Know you're giving her excellent love and care. Just try to relax and enjoy your visits without putting more pressure on yourself.

Love,
 

daughter

Registered User
Mar 16, 2005
824
Dear allylee, I hope I didn't paint too rosy a picture with the positive thing, I also didn't mean to upset and I do understand that feeling of despair when nothing is getting through, but something just drove me on. Even though my Dad might not have known who I was, I knew him - and whenever I glimpsed one of his old characteristics, like saying "thank you" in a certain way or rubbing his hands together to warm them up, that was my reward for all the pain - that was my Dad.

I'm glad the staff are good to you, it makes such a difference when they make time for the relatives too.

Love from Hazel.
 
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nicetotalk

Registered User
Sep 22, 2006
155
stretford
Hi all

denial yes it is something which iam sure a lot go through, when my mum was first diagnozed we did not as a family know that much about the illness. And over the 8 years she had suffered there were times i use to brake my heart, but i would say i blanked it in someway its hard to explain i knew a little about the illness but i never thought she would die from it. The day she was addmited in to hospital 3 weeks befor she passed, it hit me like well i can not explain, i remeber crying my heart out in the hospital its like it had just suddenly hit me my mum is dying. I dont think you ever think someone so dear to you someone you love so much will ever leave you, its awfull a very difficult time for all loved ones.

take care all
kathyx
 

bel

Registered User
Apr 26, 2006
757
coventry
your first start of thread i thought the same as you but

my hubby has fld
i have tried to make things for him as normal as poss and deny he will get worse
me being selfish but he is getting worse and fast
i hopeit is not the same for you
sending love bel x
 

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