Is Dementia Catching
Questions about Dementia
I have read and read again and again any information I can find about dementia and strands of what I read apply to my situation but loads does not. I was a dementia newbie up until about 12 months ago and knew nothing of the condition. I had read heard the word dementia, and thought it only applies to old people, so it won’t affect me. How wrong was I?
I have had my mother diagnosed. I knew something was odd about her behaviour and I started to search the internet for examples and information. The day the diagnosis came upset me more that I thought it would. I knew something was very wrong with her but to actually have it spelled out to me sent me into a spiral of grief. I was not prepared for it what so ever. Anyway that has passed and now we have to deal with it, or rather I have to deal with it.
One particular website was helpful by putting the symptoms into grid and then at what stage each of the symptoms became noticeable. Some of them fitted my situation and then I would see another symptom and think ‘oh no it’s not dementia she does not do that’. I lulled myself into a sense of false security and denial that my mother was suffering from dementia. I still do, because the behaviour is so random and I have trouble accepting what the future may hold for us both.
One of the things that I have noticed is the lies she tells. There is not much about my mother’s life that I do not know. I know that sounds smug, but what I mean is that I know when and where she went on holiday, what she did as a child, what she did for work, how she run her home, people she knew. Noticed I said ‘knew’, more about that later.
I could understand if there was some truthfulness in her stories but she completely makes stuff up. She may say that some old broken bit of jewellery, worthless by the way, is a precious heirloom passed on by her great grandmother. ‘WHAT’, where did that come from. In the beginning I would have challenged this made up story, I would see the embarrassment and distress it caused her so stopped doing it and asked close family not to do it either. Is this the right thing to do, should I challenge her over her ‘fibs’ or rather ‘great big woppers’? I don’t know, it’s like walking through a minefield with a blindfold on.
Another problem with my research is that there is no mention of this story telling, which is very believable. If you did not know she was lying you would believe it to be true. This is where I get to look like the liar. She also looks very good, she is slim, dressed very well, by me, may I add and she is a very attractive older lady. She is eloquent and very lady like. In my mind anyone with dementia would look like an old grey haired hag, with no teeth, walking around in rags. Oh no, it’s just not the case, and how judgemental have I been in the past. Whoops, feel bad about that one. Anyway back to the lying....it’s an art form and actually can be very funny. Sometimes I cannot help but looked shocked and then start to giggle. When did she shear a sheep on an American ranch – well never actually but in her head she has. How hard is that to keep a straight face and not say ‘Don’t be so bloody daft of course you have never done that’? It takes all my resolve to just nod my head and say ‘oh really yea, great’.
The thing is dementia does not take away feelings. She gets upset, she gets sad, she gets embarrassed and she gets angry, she grieves. This was a surprise to me because as the illness took its grip I really believed she would just be in her own world, being kept safe by me. Another ‘how wrong was I’. It’s hard to get her to understand what you are saying. I was talking about buying some blinds for the window and the blank expression on her face said it all. She had no concept or understanding of what I was talking about. She looked at me with that blank look, staring into my face looking hard to take a cue from me. I tend to shout louder to try and make her understand and then she tells me off by saying ‘Don’t shout at me how dare you shout at me’. Then I have to describe a blind, a window, what a blind does at a window, it’s exhausting and you wish you hadn’t said anything. In fact I don’t say very much to her anymore. Either she does not understand what is being said or she makes up some fantasy that has absolutely nothing to do with what you are talking about.
I do feel guilty about this one because to be honest I do not converse with her very much at all. She sits on her sofa staring at the TV. I have to trawl through the channels to find a black and white 1940’s film and its better if she has seen it before, preferably the previous day because she will be able to follow some of the story line. One of the things she keeps saying is that everyone on the TV is a soldier or airman and that all the extras are in every programme. It does not matter if it’s a live news coverage or a 1970’s episode of Columbo, the man in the background is in everything. Again I do not try and correct her, I just raise my eyes to the ceiling and think ‘oh god, not again’. Should I pander to this behaviour or should I not; I do, but should I? Who can tell me? The information available is universal it’s not about my mum and me. She also keeps telling me every programme is boring, boring, boring. It’s not and I was watching it, but I have to switch the channel, then that’s boring. Should I throw the TV out of the window and just sit in silence. I don’t know? Can you tell me? No one else has.
I keep finding bits of food in drawers, in the microwave, wrapped up bits of toast in toilet tissue, biscuits in her pockets. I only realised she was not eating what I gave her when she had slight food poisoning and she told me she has eaten some toast out of her drawer. How long had that been there? Now I have to go on food searches to find it all and chuck it before she eats it. She tells me she baths, she does not, but how can I embarrass her by telling her she doesn’t. She thinks she does. She does not remember how to put a bra on and I have to help her, she does all her buttons up wrong, wears odd shoes, loses her hearing aid, glasses and false teeth five times a day. If I put them somewhere safe she has forgotten where I have put them, or that I have even put them safe. Do you get the picture. The stuff I read on the internet didn’t tell me about all this. She wants me to buy her a book to read, I will of course, but how will she react when she knows she cannot remember the last paragraph she has just read. I am dreading that one.
I have not told her she has dementia. I cannot bring myself to tell her, she will cry, she will over act because that what she does. She models her own behaviour on a 1940’s damsel in distress and even uses the facial expressions and scripts like throwing herself onto a sofa, and beating her fists into the cushions and says things like ‘Hou coold u doi theeese to ma’ that was my attempt at a clipped British middle class accent. I cannot do it. I cannot find anything anywhere to tell me whether I should or shouldn’t tell her and if I do how do I do it?
We have had a couple of instances of incontinence that she has completely forgotten about. I heaved, choked, spluttered and could not eat for a week after having to clean her up and the bathroom that she had splattered her body waste all over. It’s my mum I know but I am going to find this one almost impossible to deal with in the future, should she stay with me. I know nurses and carers do this one without batting an eyelid so it is possible. I put my difficulties with this one down to the fact that I am not used to it. The more it happens and the more I do it the more I will get used to it. There is also no information on how you do this that I have found, it would be helpful. Do I buy a nose peg, wrap a perfumed scarf around my face, how do I stop the gagging reflex. Again she will know that I am struggling and she will get upset and will be mortified about the situation, so the pressure is on to smile whilst doing this one and to remain calm and courteous at all time.
I referred earlier to ‘people she knew’, well that exactly it she knew them once, family, friends, associates, work mates. Where are they all now, yea you got it nowhere to be seen? Not even a phone call. This one makes me so sad, she gave a good’ do’ in her day, always had an open door, and a cuppa, now nothing. She is not contagious for god’s sake, she has DEMENTIA . There is no information on the internet about ‘how to beg steal or borrow someone to help you and how to deal with loss of other family member’. No nothing, so if you come across this rambling and you are dealing with Dementia, remember there is no definitive explanation to your individual circumstances , there is some stuff but and it will help but it will leave you confused.
This really is going to be an explosive problem in the future and we are so unprepared for it. I imagine every high street with zombie like people walking around them day and night. Stressed relatives running around trying to round up their family members and usher them back to safety. Trying to cope with full time jobs whilst not sleeping at night due to caring responsibilities, never going on holiday because you cannot afford the respite care and don’t trust it anyway. There is always the chemical cosh I suppose. It that right or wrong is it acceptable, would you do it to your relative or is it a breach of human rights. You tell me because I don’t know.......
Back to the title of my piece ‘Is Dementia Catching’ I think it may rub off on you. I read a newspaper article and it stated that if you are looking after or around people suffering from dementia you will start to mimic the behaviour. I thought it was a load of old rubbish, but do you know I am mumbling, forgetting what I was talking about, forgetting my words, putting stuff down and losing it. My theory is that the situation is so abnormal, new to whoever is trying to deal with it and its just stress, that’s it, nothing less and nothing more. So whoever wrote that article may have been onto something. It’s understandable, you are with the sufferer 24 hours a day, isolations starts to kick in, you are thinking for two people most of the time, so it’s very understandable. Maybe I have it, and don’t know it yet. It will affect one in three so they say, scary isn’t it.........
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