Hello - getting things off my chest

[TomN235]

Hi all,

Just registered yesterday and thought I should introduce myself as there seem to be many amazingly helpful people on this forum.

My Mum - whose only child I am - was diagnosed with Alzheimer's just over two years ago when she was (only) 61 and I was 21. For the last six to nine months she has been gradually getting worse. She can be completely fine (especially for people who don't know her well) for days, but will also sometimes try to go shopping in the middle of the night or complain that it has been dark for days. Also, she has developed some sort of psychosis (at least that's what the doctor thinks it is) where she splits me up into several people - there is a 'good Tom', a 'bad Tom', a 'little Tom' and many others. Sometimes we will have a completely normal conversation but then she will ask me how 'all the other Toms' are. On certain days, when she is very confused, she also has trouble realizing her relationship to other people - looking for her mother who died almost 25 years ago. Luckily, there haven't been any problems relating to spatial orientation - she can find her way around town without any problems, although, of course, if she is in a vaguely foreign environment that goes through the window.

Currently she is living on her own in a medium-sized city. She has one ex-colleague and several neighbours keeping an eye on her, but I am living far away - she is in Germany and I am in the UK. She divorced my father about fifteen years ago, but he (and his new partner) do look after her from time to time. There are no other living relatives. I am not really in a very secure position myself - still a student and having no idea what I am going to be able to do after finishing at university (doing a PhD at the moment).

Mum is absolutely refusing any care arrangements. Various doctors and social services have been very supportive but have had to admit that they don't really know what is best for her - they are suggesting just to try various different things. For now, she has a care agency looking after her twice a week for a few minutes - that was all she would tolerate and we are hoping that it will make her get used to having someone come and see her. Obviously she doesn't need constant care quite yet, but she does need someone to look after her, making sure she eats, various practical things are sorted out, etc. Trying to get her to accept any help (even down to a cleaning lady) is a constant fight. I have been making frequent trips back home, but they are always overshadowed by me having to arrange things behind her back whilst at the same time trying to get her to gradually agree to things I am doing for her. Of course, there is the issue of me feeling guilty for not being able to see her frequently enough as well.

Anyway, that is enough for today. Thanks for listening to my ramblings if you have managed to read this far. It was nice being able to write it all down and get it off my chest.

Tom

 

[Nell]

Hi Tom,
Welcome to TP.
I'm so sorry your Mum has this dreadful disease and that you are in such a difficult position. Some TP members live a distance from their loved ones with AZ (as you do) so they can give you good suggestions.

I think it is extra hard to have to cope with a parent with AZ when you are so young yourself (please forgive my ageism!). I'm in my 50s and I find it very difficult. Your Mum is blessed with a loving and caring son. Seek support and solace here whenever you wish - that is what TP is for - and it does this job very well. Every best wish, Nell.

 

[allylee]

Hi Tom,
your post struck a chord!
My mum had very few subtle sypmtoms of early dementia(forgetting names,places etc)which I put down to age although she was only in her mid 60s. She did however experience pyschosis and paranoia similar to your mums, where she constantly accused me of trying to move house without telling her, amongst other delusional thoughts.It was this that got us involved with psychiatric services and our diagnosis of AD.
She carried on with routine daily tasks at this point , and appeared relatively "normal" to others. Im sure many of her friends regarded me very suspiciously in those days.....but maybe that was me being paranoid.
It is really tough being an only child in this situation , and I echo Nells comments about your young age, and of course the distance between you and your mum.
Tom , this is an amazing site , full of people with words of wisdom and kindness who have got me through many dark days over the last three years.
Everyone on here will be there for you too.
Ally xx

 

[Grannie G]

Hi Tom, Welcome to TP. I`m glad you found us.

If you are worried about your mother and she`s resisting having people in, could you ask one of her familiar neighbours to check on her on a regular basis, just to put your mind at rest.

If you could be sure she ate regularly, locked doors at night and had food in the cupboards, at least she would be safe for the time being.

Many neighbours would do more than they do, but hold back for fear of being intrusive. I found this when I cared for a neighbour of mine.

Once I got a foot in the door, I was able to make sure he was helped by other agencies when the time was right. But until then, I shopped for him, checked his cooker and fire were switched off and was there when he lost track of time.

Keep in touch, Tom. You will find lots of support and friendly advice here. It must be so difficult for you, trying to concentrate on studying whist worrying about your mother. Someone is always here.

 

[Kayla]

Dear Tom,
I am an only child myself, so I know how you must be feeling, especially as you live so far away from your Mum. Sometimes I feel quite annoyed and cross that I don't have any brothers and sisters to help me look after Mum and take decisions about her care. However, reading some of the posts on here, other relations can cause even more problems!
You are very young and it is very important that you finish your education so you can begin your career and the rest of your life. Try not to feel guilty, but do the best you can for your Mum. If she is refusing outside help, then things are hard for you. Do you think she is trying to manipulate you in some way?
I hope that you can persuade her to accept some outside help and you can find some support for yourself through this site or other agencies like the University Student Welfare Services.
Kayla

 

[lou lou]

Hi Tom,

I have a 21 one year old living at home he's called Tom. I can't imagine him now or in a couple of years time like you undertaking all the tasks you seem prepared to do in order to help your mother.I am impressed that you try so hard.

Your dad sounds like a decent man prepared to help your mum sometimes even though they divorced 15 years ago and his new partner too.

Speaking as a mum I'm sure your mum would want you to get on and make the most of your life and not be burdened by taking on a caring role so young. I'm sure she would be mortified if she thought you would not go on with your career. (What is the Phd in ?)

It sounds like you do what you can but she may need to decline further before she is prepared to accept the help she needs. Eventually she will need residential care however unthinkable that might be at the moment and it will fall to you as an only child to make those difficult decisions.

I know for many on this list especially those whose partners rather than parents have this awful illness residential care is unthinkable but eventally when you can no longer do the undoable you have to think the unthinkable and say the unsayable.

I stayed with my mum during the week for a few years but with a young family of my own and a full time job it eventally got too risky to leave her alone at all, even with carers and district nurse going in 3/4 times a day she wasn't safe. As much as I loved her I could not afford to give up my job to be a full time carer.

I don't know what the law is in germany but if you can you need to sort out power of attorney as soon as possible.

Unfortunately as many others have described on this list dementia suffers can have periods of lucidity when they are aware of their declining faculties interspersed with periods when they have little or no short term memory and can forget simple things like whether they need to eat or drink or go to bed.

In the early stages of my mums dementia she was just vague and forgetful but latterly it proceeded to hallucinations and paranoia but whenever my brothers saw her she seemed perfectly OK and they didn't seem to believe me for a long time. There's no doubting it now though and she has been in a care home for 19 months now.

Others on this list have written about caring from a distance and it must be extremely stressful and demanding. I lived 80 miles away from my mother and that was hard enough.

Do try and find out what help and support might be available but don't try and take it all on board yourself. You sound like a smashing young man please don't ever be hard on yourself.

Kind regards

Lou Lou

 

[Susan Charlton]

Tom

I too have just registered and your message immediately struck home with me. I too am an only child, dealing with a parent with dementia from a far distance. I left my parents in UK to live in the US over 20 years ago and about three years ago my mother started to develop dementia. Reading messages on this site has helped me realize that her progress was somewhat normal, but at the time it was frightening and felt unique. Similarly to your mother, she cloned people, particularly my father, into several different versions each having a different character. She would very often vehemently deny that my father was her husband, which was obviously devastating for him after over 50 years of marriage. After speaking with me about ending his own life, my father thankfully passed away relatively peacefully, though in much pain from cancer in May last year. My mother took his death stoically, as she knew that it was what he wanted. Due to the circumstances I transferred my mother to a nursing home which is probably the hardest thing I have ever done. Her dementia continued to get more and more delusional with severe anxiety until she broke her hip in autumn last year at which time her condition worsened very quickly to the state she is in now whereby she is entirely in her own world, very, very anxious and totally non functional. My intent was not to depress you about the future, as I think the progression of my mothers disease was much hastened by cicumstances and it is probable that your mother will remain functional for many years to come. However, I wanted to let you know that I am getting through this by focussing on the positive. I am so thankful for the many happy years my parents spent together, I am thankful that my father did not have to see my mother in the condition she is in now and I am thankful for the help and kindness I and my mother are rec eiving from the nursing home and my friends in the UK. I know that finding this site earlier would also have helped. Presently I get through by refusing to put a guilt trip on myself and by recognizing that my "mother" is gone; the person she is now is someone she would never have wanted to be. I apologize if this sounds cold to you.
Tom, I want to wish you good luck, you sound like a very intelligent young man who will make the best decisions to deal with what will be a difficult situation.

Kind regards

Sue

 

[Lucille]

Hello Tom

Welcome to TP. I hope you find as much support and help on here as I have.

You sound as if you've done as much as you can at the moment. Your softly, softly approach with your mum is probably the best way. She sounds like a very independent woman and combined with the illness, possibly perceives everyone as trying to take away that independence. (That's certainly the case with my mum) It's difficult to persuade otherwise, I'm afraid. However, as you are so far away the job is doubly difficult and made worse by the dreaded guilt monster. We are all familiar with it on TP and indeed, pass it around like a baton. Best - in the circumstances, than let it sit on your shoulder for too long!

You're doing a great job. You have your own life to lead and to finish your PhD. Are you getting any support from Uni? Your Head of Department or supervisor - or as Kayla suggested, student counselling services?

Keep your chin up and post again to let us know how things are. You're amongst friends here.

 

[Amy]

Hiya Susan, Welcome to TP.

Presently I get through by refusing to put a guilt trip on myself and by recognizing that my "mother" is gone; the person she is now is someone she would never have wanted to be. I apologize if this sounds cold to you.

We all cope in different ways - and my brother, like you thinks that my mum "is gone". But as he said one day when the pain found a crack "it doesn't mean I don't love her" - you don't sound cold - we all cope and get through this in our own ways.
Pleased that you have found TP - better late than never!!
Love Helen

 

[TomN235]

Thanks everyone for all the supportive comments.

Ally and lou lou - I feel strangely torn between those who don't know her well and are just plainly puzzled by some of the things she has told them but don't think anything is wrong with her (like me bringing home lots of visitors when that has just not been the case) and those who have more background info and believe that she needs more care. Luckily - in a way - she was working in a job where the early symptoms were noticed: she was a secondary school teacher and suddenly the school got lots of complaints from pupils and parents about her setting the same homework multiple times, confusing people, etc. But a lot of random acquaintances have no idea what is going on - although it has become more obvious over the last few months.

Sue - I know what you mean and it doesn't sound cold. In a way, they are not the same person, but also you have not remained the same person for them either. Their bodies and spirits may be different to what they used to be and so will your love (maybe not in intensity but in character), but that doesn't mean that you don't love them anymore. Sometimes I think I should really think of my mum as an amazingly deep philosopher when she 'clones' me - really we all change constantly, she just perceives these things in a different (and sadly very distressing) way.

She was - and still is - very independent and doesn't like having that taken away from her. It just sometimes seems that she is exhausting all her energies completely unnecessarily on keeping up the appearance of being independent even towards me and her closest friends. It must be terrible for her and she is very worried that people will think she has gone 'nuts'.

I am lucky in the sense that I have good friends and a lovely partner I can talk to. My supervisor doesn't know all the details but is nevertheless very understanding and doesn't put me under any pressure to finish my thesis (on the history of European travel to Tibet btw).

 

[Margarita]

She was - and still is - very independent and doesn't like having that taken away from her. It just sometimes seems that she is exhausting all her energies completely unnecessarily on keeping up the appearance of being independent even towards me and her closest friends. It must be terrible for her and she is very worried that people will think she has gone 'nuts'.

Sounds so like my mother , that fighting sprite is what is keeping her going , what may seem to us to be unnecessarily, to them its keeping they dignity for a long as they can , I don’t blame mum now for that 5 years on now and she still keeping up the appearance and I would not want to take that away from her for the world , because soon the AZ will do that for her , yes its emotional hard for us to see them like this , but I feel proud of my mother for doing that now, must be because she 76 and brought up in the war , seen so much hard time, she going to take out of life what she can now and do it her way , its amazing really to see how she fighting this AZ and not giving in to it

Your mother sounds like a strong woman, good for her , more power to our mother , they made us to be the way we our today .

Welcome to TP hope you post more , as it was lovely reading you post on hear