why do I doubt the diagnosis so much?

[Lulu]

So much of what I read on these posts I can apply to what is happening to my Mum, but sometimes, because she often is so very normal, and appears so normal, I doubt that there is anything wrong at all -even though there most obviously IS ....and this is how I spend my days -HAS SHE, HASN'T SHE .. Is this all part of it? Is this what they call 'denial'? I don't want to feel like this anymore -I just want to settle down and look after her.

Would anyone reading this be willing to describe to me how it was for them in the early stages, and how it changed for them over time? Did everyone feel like this? Thanks.

 

[Brucie]

Hi Lulu

at a certain early stage, the symptoms do come and go, making us all - doctors and consultants included - wonder whether we have things pegged correctly.

Denial is more when you don't ask the questions you are quite rightly asking, and when you ignore the condition.

While there is any chance at all that something else may be causing the symptoms [depression, drink, etc] we have to check it out as almost anything else would be better for someone to have!

In the early stages I knew what Jan had, but had no idea how it would develop for us.....fortunately. We just lived for the day. Carpe Diem!

 

[daughter]

Yes Lulu, I felt exactly like that. My Dad was (still is) physically very fit and has always been jolly, so his 'acting a bit strange' sometimes was often put down to him playing the fool. Then my Mum thought he didn't love her any more because he was started to become distant. And surely, everyone mislays their keys / forgets words etc. sometimes? This was all about 5 years ago, but it is so difficult to look back and say when 'it' really started because of those 'very normal' moments.

Nowadays I grab hold of and cherish those moments of lucidity, for instance when Dad remembers my name or does his little laugh to himself like he used to, having understood the joke. Recently my Mum said that you get used to anything in time. Well, I guess that could be 'acceptance' but it takes time and is ongoing. I totally agree about living for the day.

All the best,

Hazel.

 

[Nutty Nan]

Dear Lulu,
I care for my husband who has AD. I had the same emotions as you over 5 years ago, and I still do now: the times when you can't believe how sociable, witty, imaginative, happy and normal the man appears - yet the day before he was unable to find his way home, couldn't remember my name, or those of his children, had no idea of how to get dressed or where the kitchen is ...... Alongside this, I feel I am betraying him each time I tell a doctor, nurse or anyone else how difficult some things are. It's often with strangers that he manages to put on a pretty convincing act, but close observation cannot hide the sad truth.
Almost each day teaches me something new - how to lend a helping hand without making him feel he has failed, how to make my voice sound chirpy when something's gone wrong and I'd actually like to scream, how to dish up his food so that he doesn't have to struggle with large pieces, how to fold his shirts, then undo all the buttons again before putting them in the drawer, so that when he takes one out he can put it on without struggling too much (on a good day), how to put his coat (or hat/shoes etc) away when he says it's not his, then bring the same one out again 5 minutes later (and again, and again) until he is happy to put it on. So much of our life together now is 'pretend', the white lies were the hardest thing to get used to, but if that's what it takes to make him feel happy and safe, then so be it.
Every now and again, his quick wit, his old chuckle, his mischievous twinkle surfaces, and then I know that he is still there, and for a moment, I feel good. Carpe Diem, as Brucie says: seize the day, the moment, the opportunity!
Best wishes, Carmen

 

[Norman]

Lulu
over 7 years I have had doubts about my wife's condition.
Like you I did wonder at times if they had got it wrong and there was nothing wrong with her,I know now this is a common feeling and one which most ou us go through.
I felt disloyal telling people how hard it was at times and the way she behaved some days,I did wonder if they thought I was a liar and dreamt up the stories I told.
To strangers she seemed normal,and unless questions were asked she seemed to be to them .I cannot tell you how your mum's illness wil progress,every one is different.
Over the 7 years with my wife's AD there has been a very slow deteriotion,strange things happen,we still have the tissue syndrome,the losing things,not recognising people.
We have learned to live day to day,we get by with the very odd bust up.
Since I have totally accepted the situation,and accepted being able to leave Peg in save hands for a few hours,thanks to Crossroads I am coping better.
Hope this helps a little
Best Wishes
Norman

 

[Sheila]

Dear Lulu, I do hope these messages of support help you a bit. Just remember you are doing the very best you can in a dreadful situation. Please post on TP when ever you can, so we can help by telling you of our own experiences. That is all we have, but a problem shared, although not halved in the case of dementia, can sometimes become easier to understand. Thinking of you, love She. XX

 

[Lulu]

Thank you for all your thoughts -it seems I really am not alone in my doubts, and it's good to know that others have felt like this in the beginning, that the symptoms can come and go in this way, and that everyone has doubts. Mum is spending the day with relatives soon -the first time she's going to be without her 'support' team. I am half hoping, and I know this sounds awful, that she has one of her more confused days so they can SEE for themselves .....! Get the impression they don't believe this is happening, that I make it all up! Thanks again. Lulu

 

[Sheila]

Dear Lulu, ha, yes, I know just what you mean. Sometimes it is exasperating the way things are so good in front of others then so awful when no one else is there to see, it does your head in. My Mum was on perfect behaviour one afternoon when my aunt and uncle visited. I took them round the garden as she was dozing. "She's not too bad at all really is she?" they said, I tried to explain, they didn't seem able to accept it. Then, some time later, when they got up to leave, Mum asked them for a lift "home" they got the sharp end of her tongue when they said they couldn't etc. After that, they began to understand a lot more!! Love She. XX

 

[Lulu]

Hello Sheila .. all these little insights really do help.

They are such subtle, tiny incidents that happen each and every day, but then it's all OK again and people don't ever see what you are seeing. I sometimes feel that I must be a weak, disorganised sort of being, not being able to cope with someone who has next to no problems as far as they can see -I get the feeling they think I am bad at manging my time, or that I should try harder! I don't feel as though I can say to anyone that my life has totally changed, that there is never any time anymore, that I am beginning to ignore the lives of my own children ....except my husband, who sees it only too well. And yet here is someone who relies upon me totally ..that is the thing that gets to me,not the disease at this stage (though I do wonder what is ahead for us) because she obviously isn't as bad as the people I read about here,. So yes, I think it's a fair description, 'doing your head in'. It is all constantly turning around.

I think Mum must be early in the disease, on some days, but other days I see her at a much more advanced stage if you understand what I mean. As long as everything is quiet and calm, nothing untoward, and she is being told what to do and when, then all is fine. The minute there is anything unexpected, it's the end of the world. Did you all find this? And I read about 'wandering', which Mum doesn't do, though she did tell me last year that she had got lost in her home town. I know for a fact she had stopped going out, that Dad was doing everything. Now she lives close to me, she walks the short distance to us every day without problem, but refuses to go anywhere else alone. I believe that she fears getting lost so much that she just sits tight.

But it's a huge relief to know that I am not the only one who has ever been through all this, especially at the beginning. Thanks again to everyone -and hope this is coherent as I am rushing off! Lulu

 

[ruthrinehart]

my mother is in this early/middle in/out phase

I just found this forum, and am so glad! I am sitting here at home, in Austin, Texas, waiting for a social worker [who is late!]. My mother came to live with us last November: she was released from the VA hospital with a recommendation for nursing home care, and I just couldn't do it, couldn't put her there.

So, here she is, and I'm fearing for my own mental health, my own ability to keep up with it all, and still continue earning an income! And last Friday, she apparently called the police, and there was a big to-do, during which she said she didn't feel safe with me here. So, Adult Protective Services was called, and that's who is supposed to be here [10 minutes ago].

about 15 minutes ago, Mom had been talking on the phone with her sister, who mentioned the social worker visit. Mom came and asked me about it, and I reminded her how it came about that she is visiting. [I've mentioned the visit several times this week ...sometimes she keeps things in memory and sometimes not]

Mom asked why I hadn't told her the social worker was coming over. When I said I had told her, but maybe she forgot, she got mad, shot me that mean look, and said sarcastically, "Well, isn't that always a good excuse, Ruth, that I forgot."

and I end up sobbing, trying to keep her from hearing, because I don't know what to say. what can I say in a situation like this, when she's accusing me of not telling her something. of course, I do tell her, and of course she forgets, but she totally denies the diagnosis, and its really not fair to her to try and get her to believe it. but it hurts me too much, more than it should, I know. I'm having a hard time letting these comments of hers go. Of course, I'm the brunt of all her anger and resentment.

I think I will be able to get some good help and feedback from these forums. thank you all for participating and sharing.

Best regards,

Ruth Rinehart

 

[Brucie]

Hi Ruth and welcome!

I hope the weather in TX is warmer than here in the UK - though it is actually quite warm [for here] at the moment. I was in Austin visiting the University some years ago.... nice place!

You already realise you are in a difficult situation, having a mother with alzheimer's and trying to cope with it, so I won't labor that point.

My first point is that with someone who has dementia, you need to tell them things [even after having done so repeatedly] each time as if it were the first. If you say to them that they have forgotten, they get on the defensive and therefore get angry. The odds are that she knows there is something wrong, and is terrified about it, but is trying to carry on as if there is nothing wrong, hoping no-one will notice. In reminding her you told her something, she knows that you know, even if only briefly.

Your Mom will almost certainly doubt the diagnosis - if she does that then I would think she is only in the early stages of the disease, probably. Later, she won't be in a position to care. Sounds awful, but for you, besides being painful, it will help.

I found when my wife was at home, in the early stages, that I had to live in a world of our own creating - and I was working full time at that time [until she could no longer be left on her own]. Logic and reality do not apply, you have to tell kind lies, agree to things that are absolutely not true [for example she said "my mother will be mad" - when she had been dead for 20 years]

The closest carer always takes the brunt of the pain. You need to tell yourself if she is being hurtful, that it is not her, but the dementia that is talking.

When you have spoken to the Adult Protective Services person, try and have them register your Mom so they don't get called repeatedly. It may be that the local police have a file someplace of similar cases, so if Mom calls them they are reassured - though they should still check.

Try not to get too upset! Impossible of course, but try anyhow.

If you have questions you think this forum can help with, then of course ask away, or just rant away if you have had a really bad time. We all know what it si like.

Best wishes

 

[gemini]

Dear Lulu

My mum in law is in the early stages of AD and my emotions have been on a roller coaster since she moved close to us in Jan 2003. I've had many days when I've wanted to scream..... Why can't she do this or that today, when yesterday she did the same chores with ease. Why has she just told her neighbour that she has no food in the house when I took her shopping 2 day's prior and she spent £98.00 on groceries.... (so I'll rush round and ask her if she needs anything from the shops and she'll say 'oh no..... I've got everything I need.... we only went shopping the other day..... ) Arrrrggggghhhh!!!!!!

At one point early on she lived with us for 10 months while she was relocating from Leicester and she just about drove me crazy. Can you imagine...... your Mum in Law living with you would be a trial..... but a mum in Law with AD.....!!!! I would come back from work to find wet washing draped over the furniture on what was a lovely sunny day as she thought it was going to rain, dirty crockery put away as if it were clean... every piece of cutlery wrapped up in toilet paper..etc etc.. but then we'd spend a very plesant evening chatting and you wouldn't even know that she had an illness of any kind.

Then there has been the incidents of 'catty' comments..... This is so out of character for her...... She really is such a very sweet natured lady and always has been. Yet every now and again she'll pass a comment which has totally knocked me for six. I've often said to my husband that if I didn't know better, I could swear that she was training to be the queen bitch of the century with a comment like that!!!! I honestly don't think she realises what she has said, and I think she would be mortified if she did.

I posted a thread last year - 'early stage confusion' - which if it's still there may help you as I was beside myself at the time and received a lot of support.

I have learnt since then that there is no point feeling angry or frustrated with myself or her. I don't mean this to sound in the least derogatory, but my own perspective is this.... she lives in a Gingerbread House on Lollipop Lane, she's absolutely fine!!!!! We live in the real world and like it or not have to deal with the reality of the situation. If she's having a 'good' day... fine...... if she's having a 'gingerbread' day...... well there are two choices..... get stressed.....or have a cuppa and a slice of pie..... Take it from me the slice of pie is the best option...... especially if like me you have a home to run including 2 kids.... 3 if you count hubbie!!!!

I particularly sympathise with you on wanting your mum to have a 'bad day' when she's away. It doesn't sound awful at all. It never ceases to amaze me how 'well behaved' mum in law is when anyone eles comes to visit her, or even phone her. Her nearest relative lives 50 miles away so no one other than me and my husband and our kids see her on a regular basis. I gave up a long time ago trying to keep all her family informed on what she did today or last week etc..... In the end it just translated to them as tittle tattle..... and I ended up feeling petty minded. I don't bother now....... In the end I came to the conclusion that they want her to be looked after...... but my god they are so glad that they don't have to do it themselves.... THEY are the ones in denial...... Don't fool yourself for one minuite...... they know exactly whats going on........ I guarantee it......

It's a very long road....... but you MUST make time for yourself and you own family.....

Good luck.

Best regards
Gemini

 

[Lulu]

Dear All, I don't know where to start. A few days ago I was so down with it all -as obviously everyone here has also been down , and up! I was even getting palpitations as we went round and round in circles, all these thoughts morning to night. Felt like screamimg. Mum quite oblivious of course. But it is, slowly but surely sinking in to this thick head. There is now no doubt that we all have an awful lot in common here.

Ruth, you are going to find the support here. Many thingsyou mention I can identify with.

Norman, it helps more than you will know to learn that even after 7 years you still have your doubts .............I shall hang on to that. Everybody, thankyou.

Gemini, I shall go back to look at your previous posts, but yours has helped a lot. Roller-coaster is exactly right. Yes, there are 'catty' comments, yet she is sweetness and light if the person in question should appear. Why is she 'au fait' enough to be able to do that? It surely must take some thought? Why can she so quickly find an answer, an excuse for mistakes and oversights? No, I am realising that there is nothing I can say or do to change how she now is. Yesterday, I started just 'accepting' whatever was going on. No questions, didn't put her right ....I'm learning!

I also try to keep family informed, but even allowing for people having their own problems and their own lives to lead, they seem only half interested. I want to tell them exactly how much support she needs from me, but I think they belive I'm blowing my own trumpet, when really all I want to do is impress upon them that she is far from herself. When they phone her, she is completely normal, as usual, full of the joy of spring -but I BET they don't ask her any questions about her day, or anything which requires short-term memory! It'll all be stuff from the past, which she can talk about til the cows come home! And of late, she'll make up what she doesn't know. She makes no phone calls (except to me), and refuses to write letters ................I do this on her behalf, but now wonder if it is worth it. She forgot even my birthday this year, and she would forget everyone's if I allowed it. What does everyone do about that sort of thing? Do you continue keeping up with cards for the family etc?
I now notice that the housework is beginning to slip, even though she was always extremely houseproud. Certain areas are immaculate, but others need attention. Also I am starting to see her clothing which needs washing -she no longer seems to notice ..............I'm going on too long.
I feel better tonight ...................Lulu

 

[Norman]

Lulu
so glad I was able too help you.
Housework and clothes?
My wife now does nothing,not even a cup of tea,she is not idle,she has just forgotten how to do these things.
Birthdays? I just send them.My birthday I get a card for myself and then she writes it.I get my own present too.
Christmas cards the same I just send them,I do tell Peg who has sent etc,I think it registers for a moment.
I may be wrong but I want to make sure that Peg is included in everything I would never want her to feel shyt out,you know the old one "does she take sugar".
Clothes and washing would be a problem but again I am on hand to wash and provide clean clothes.
Hope this is some help to you
Norman

 

[Sheila]

Dear Lulu, good, you sound much more positive now. With regard to the letters and cards etc. I started a list, the people that bothered I wrote to and explained if they wrote more than the once. Christmas cards, folk that had not replied to the one I sent on her behalf the previous year didn't get one the next and so on. That way I slowly lightened the load till I just included Mum on ours, or to the few of her own friends who kept in touch I put from Lily and family. I found it useful to type out a small enclosure slip explaining Mum's illness the first time I sent a birthday or christmas card for her. That way she wrote what she could and without embarrassing or upsetting her I just slipped it in before putting the stamp and address on. Pressies for the family, I just got on her behalf as I knew she would have done if she were able. Towards the end of the time when Mum was living alone, I would collect her washing together before we went to the shops, get it out and tumble it while we had a cuppa etc on our return. My excuse for rooting out anything that looked in need of a wash was that the machine was not full enough to warrant a load so we might as well .... etc. etc. you get better and better at making up reasons on your feet! Unless they are in close contact continually, it is all too easy for other family members not to realise the day to day horror of this disease. It is a sad fact of life I'm afraid, out of sight, out of mind. With love, She. XX

 

[Brucie]

yes, Norman's post just about sums up how things were for us latterly when Jan was at home.

With the exception that, while I still sent greetings cards from us to friends and my family [and still do], I no longer sent cards from us to most of her family, who had dropped her entirely once the illness progressed.

 

[Lulu]

hello. Yes, I am learning to make up really good stories, such as I need to make up a load of coloureds in the wash -would she mind letting me do her trousers at the same time. She just accepts it. Other items are more difficult, as she watches my every move when I go round, so to get her nightie is a bit tricky. I usually go in quite slim, and leave looking 9 months pregnant! Then when I take it back, I just put it on her bed. She sometimes asks what it is and I say, 'oh, just your nightie, and she accepts that too, as if it's all quite natural.
I don't like talking about her whilst she's there or anyone else doing it either. When we went to the memory clinic last week the routine was different. Instead of her being interviewed alone, afetr which we would go in, this time we were all in together. I felt very uncomfortable because the DR was asking questions of me 'Does she ...is she..will she..? In the end I said I felt very uncomfortable talking about her right in front of her, and so Mum was returned to the wating room. But I felt such a traitor. She never mentions these things afterwrds though, so she can't remember them ..or perhaps she does and just doesn't say anything.
Have just read Brucie's mail too, about the 'delay'. That is one of the things I notice on some things -there is like a 4 day delay . You'll mention something, whatever, and days later she will bring it up having thought about it. As if it's all taking a long time to register ................Thanks everybody. Lulu

 

[Brucie]

Memory tests were just dreadful. The doctor would ask Jan to copy a circle he had drawn, and she just sat there, pen in hand. I would be willing her to do it.

I didn't mind that she had no idea of the name of the prime minister, or what day it was, just if she could draw even a flawed circle.

Circles, and her losing her ability to write her own name, they were really hard.

At first, we would sit for hours as I tried to show her how to write "Janice" - until I realised there was no way she could re-learn these things. So we shortened it to "Jan", but that only kept us going a short time.

Over the course of time, all the other things - cooking, cleaning [hah!], washing clothes, etc - these all just sort of passed from Jan to me, but it was the things that I couldn't do on her behalf.... they were the painful ones. Most especially her fantastic piano playing; I never hear piano without thinking "Jan played that".

 

[daughter]

Good to hear you're starting to use some of the coping strategies. When my Dad was saying that black was white, I watched my Mum trying to persuade him otherwise, but it only made him more agitated. Nowadays she just goes along with it, then changes the subject and (mostly) the situation is resolved. When Mum stays calm, as you say, Dad just accepts it (usually).

Mum and I also don't like talking about my Dad and his condition in front of him and I believe you have every right to ask to speak to the doctor alone. However, I think that my Dad really is in a different world (sometimes) because he genuinely doesn't seem to see/understand things going on around him (sometimes). So here is the dilemma about 'Does he take sugar?'

My Dad is an adult, albeit one with AD, who should still be spoken to with respect and asked. However, (sometimes) he really does forget, or is in his other world, and if he really does not understand what is being asked of him, I believe it is kinder for Mum to speak up for him. It is the '(sometimes)' bit that is difficult to judge!

I know the 'traitor' feeling is difficult to live with but it sounds like you are doing the very best you can to care for your Mum.

Best wishes,

 

[Sheila]

Hi all, yes I found this talking in front of them horrid too. I got round it a bit by writing a letter in advance to whomever we were seeing outlining my concerns etc. on the whole, it worked quite well and saved Mum being hurt which was my main concern. The medical staff and "I" (all Mum's family) knew there were problems, we knew we needed help, what we didn't need was to have her upset or humiliated. Love She. XX