Anyone else same experiences?

[jc141265]

Hi, I'm just new to the forum and the main reason I wanted to join was because my father has "Alzheimer's", he's 60 and I think he's in the last stages. HOWEVER, I'm so confused...(no, I don't think I'm getting it, yet) I'm confused because as far as I've read (and I've read a lot on the topic in the last 5 years) he doesn't appear to have the classic symptoms. I've read about every kind of dementia there is except Bi-Parietal Atrophy which Sara-Jane talked about because I can't find anything on that one...that must be so hard for Sara-Jane.

Dad can't talk, he seems to know me, or at least recognises that I'm someone who visits him each day (I get a big smile of delight from him most days). He walks non-stop until he falls over (we try to get him to sit down and rest, but can't be at the home 24 hours a day and the home is always short staffed for the job they have to do). Occasionally a word will come out and it appears to make sense but maybe thats wishful thinking...but he really does seem to understand a lot of the time, like I tell him Mum is coming to visit and he came out with "when?" Dad wears nappies/diapers, he seems to forget how to sit down sometimes, he's had seizures, and can't eat or dress wiithout someone feeding him or putting his clothes on. He never enjoyed reflecting on the past, he never forgot names until he couldn't talk anymore, he never wanders away (although he walks back and forth in the one area), he appears to see things that I can't see, or his vision is disturbed in some way because he shoos things away. He'll stare deep into my eyes and he seems to try and kiss me every now and then, he has this adorable habit of puckering up and then 'blowing' (like he's blowing a candle out instead of kissing but every now and then he does manage a kiss. He used to yell like crazy at reflections but if I explained to him that they were just reflections he seemed to understand and would settle down.
Anyway, I'm going on and on, but I just wanted to know if anyone else has had the same kinds of behaviours? This disease hasn't been the pretty sentimental 'alzheimers' you read about (and I'm sure alzheimers isn't) it has been destruction and tragedy as the amazingly intelligent man who was my father dies each day and we struggle (both him and I, I think) to keep him here. [oops that brought the tears on, I've been so good for weeks!] He doesn't seem to want to give up and I can't help him.

Hope someone can empathise...

Nat (aka: jc141265)

 

[Brucie]

G'day Nat

relax - I recognise just about all you say from experiences with my wife Jan. I empathise totally.

One of the problems we face in trying to get visibility for Alzheimer's is that organisations, magazines, etc tend to like to use 'happy' pictures of a family member with their relative who has dementia. So Alzheimer's becomes a happy but forgetful old age, for those in the population who have not experienced it in some way.

Baloney! Dementia is lives destroyed, though of course we want to make each moment count, as well.

The challenge is to be able to show Alzheimer's as it can be, without scaring the Dickens out of those who have just been diagnosed, or are close to diagnosis.

Carpe Diem. Live Day by Day.

 

[Nutty Nan]

Carpe Diem

Dear Nat and Bruce,
Carpe diem / seize the day (or the moment!), is what it's all about now, since that is all our loved ones have left - no memories, no way of looking forward to anything, as that is too abstract. And yet, in spite of this motto, I have become a complete control freak since my husband has been ill. I live in order to pre-empt problems, obstacles, difficulties, imagining that this will make our lives easier. I don't think it works terribly well, it is impossible to be one step ahead, and it makes me feel useless when the next unforeseen problem crops up.
You are right, Bruce, that the cosy pictures of smiley people do not completely reflect the reality of life with AD. But it must be psychologically better than 'the truth'. What's the point of scaring ourselves and others? We have to pretend that 'we are ok' (as we routinely reply to everyday questions) in order to keep going. If I indulged too often in pondering on the less than normal situation we are in, I fear it would make me more resentful. I have to accept what I cannot change, and 'get on with it'.
In reply to Nat, I don't think your experiences are all that different to those of most people on TP. You seem to be amazingly in tune with your Dad, and it is lovely that he occasionally responds to you and your visits. There is a bond between you that transcends speech, and although it is incredibly painful for you (and probably him) to witness the decline, you are doing all you can to bring life and colour into his days. It is a gift that enriches his life and your own!!

 

[jc141265]

Seizing the day

First of all I apologise if I'm too volatile, too emotional, too controversial and rock the boat too much when most people like calm sailing. I'm a fighter not a lover, I don't like to lay down and accept defeat so Alzheimer's is especially hard to take for by gosh its knocked me down again and again.

I just wanted to say the following first. Thanks for that last bit Nan, it eased my heart to think I might be making life easier for him in some way....

As for the lovely pictures society puts of AD that are out there,...I think that there must be 2 types of people, the ones who do better by being told the absolute truth, the cold hard facts and the ones who prefer to take each day as it comes and like to not 'scare' people, not worry people, not be a burden.

I understand why it seems that the majority is this second kind of person, and I know why we don't want to make life any harder for those who have just found out the worst news of their life so we ease their pain by saying 'might suffer urinary incontinence' instead of 'will no longer be able to control bowel and urinary functions and will have to wear adult nappies". BUT I guess I'm part of the minority who wants the cold hard facts, can live life better if I know what I am going to have to face instead of having to live through 5 years of being constantly shocked, and amazed. I also think that if society did hear the cold hard truth there would be a hell of a lot more empathy for carers, and funding for research.

Instead for the last 5 years on top of the rest of the disease I've had to suffer co-workers and acquaintances and even friends not understanding why I'm falling apart , after all my Dad's just got that quaint old forgetful disease and he doesn't know what is going on, whats my problem? And sheesh he's been sick with it so long its time to get over it.

I do understand the rose tinted glasses method but let me say this, a co-worker of mine was told a few years ago that her father who lived in another city had Alzheimers and when she mentioned it to me, she was not overly concerned because of the 'sweet gentle' picture that society paints of the disease. But when she told me, I sat her down and I told her how bad it was going to get, I told her to 'seize the day' now, make sure she has said everything to her Dad now that she wants to say, make sure she really enjoys every moment today because he will slip through your fingers before you even realise it. And yes she was shocked, I apologised for being so mean and hard but told her I thought that if someone had done the same to me I would have thanked them later and not lost so much before I realised it was too late. And you know what, 3 years down the track things have gotten quite tough for her, BUT she came up to me the other day and thanked me for preparing her, thanked me for giving her the chance to say everything she wanted to her Dad before he got to the point of not understanding or being able to respond sensibly anymore.

So, I say again I understand why the 'rosy picture' but I think it should also be understood that some of us out here, we are a minority, but that should not mean that we be ignored, are not that kind of person. No amount of telling us to calm down or telling us that we shouldn't worry ourselves so much is going to stop us from being like this and in fact that will make us even more frustrated. We never would have got so worked up in the first place, if we had of known the truth in the beginning.

PS I also thank Bruce for telling me that Dad's symptoms are classic Alzheimers, that calms me because then I don't have to worry that we missed something and could have been medically treating him differently. Doesn't anyone think its crazy that it has taken me 5 years of asking questions to doctors, nurses, internet sites and so on to be finally told that?

 

[daughter]

Hi Nat,

Wow, never mind my puny welcome to TP in the pics!!! thread - a really B I G welcome to TP. your enthusiasm and forthrightness have got me hungry for more!

As you indicate, people right at the start of this tortured journey may find the exposure to phases such as "will no longer be able to control bowel and urinary functions and will have to wear adult nappies" very difficult to contemplate (as I would have - and still do to some extent before it actually becomes something happening to my Dad). But, I do agree with your thoughts on being open and honest about the realities of TP, that the facts should be 'out there' for all to see in the general arena. If they're not , then there can be no discussion, no opportunites for understanding and less chance of help where it's most needed.

Rest assured, you can't be "volatile, too emotional, too controversial " on this site, this is the kind of stuff that makes TP what it is - great!

 

[Brucie]

Hi Nat, just another thought regarding the pictures.

Some people are worried about loss of dignity. They are concerned about dignity in their own terms. That is something we would all worry about - until we have day to day responsibility for someone with dementia.

Dementia hs no dignity - in our 'normal' terms. What is dignified is the way the people who have dementia cope, and with such bravery. To show pictures of them doing that at an advanced stage - obviously not using really bad ones - can only help to highlight the development of the condition.

...all these things are personal thoughts, but how can we bring home the extent of dementia unless we can show it is more than a loss of memory?

 

[Mjaqmac]

I wholeheartedly agree that you cannot be too emotional on this site. It is the nature of being a carer, you are not spared the ugliness of this illness on a day to day basis, it is a living nightmare being a carer and even when it's over it continues to carry it's stresses as the shadow of dementia once encountered, never leaves.

I have let my heart hang on my sleeve in it's rawest entirety and it has been tended to by those others here whom know exactly how I'm feeling and what I have been through and am still going through at the different stages of being a carer (even after your loved one dies). I could not have coped the past year without TP and the angels on it. I encourage all out there in pain to share, there is always someone here who understands the stage you're at and can sympathise if nothing else. You are truly not alone here.

I would like to thank for the millioneth time all whom have helped and continue to help me.

 

[Norman]

I think it's all been said before but---------
AD is an evil lousy disease that takes over completly,to the detriment of anyone associated to the sufferer in any way.
It ruins marriages,destroys friendships,divides families and causes great grief and unhappiness to a great many people.
It is not just a little memory loss thing where the sufferer has no other problem other than the memory loss,it brings with it many and varied horrors.
We have to go on day to day rememberig that our loved one is in there somewhere, and being grateful for the times when they come through with a smile or a touch.
The greatest bonus of all could be a kiss or a cuddle,that makes all the tears and the heart ache worth it,for a while.
At times when the tears flow and the heart is breaking we are lucky to have our TP family,to be able to share with others, who understand,and ease the pain.
Thinking of all of you
Norman