Newcomer to Talking Point

[CassElle]

Hi, I am a newcomer to the site - taken me a while to fathom out how to post onto the Forum; let's hope I get it right

I am full-time carer to my 76 year old mother who was diagnosed initially with Vascular Dementia following a brain scan (shortly after having part of one of her lungs removed through Carcinoma), and then subsequently, following a further brain scan, with Alzheimer's 12 months ago. Having successfully overcome the Carcinoma it seemed a very cruel blow to then be stricken down with AD. Since that time she has also developed Diabetes.

This site has been a much welcomed find; it's been very helpful to read postings from other carers experiencing similar difficulties to myself. No matter how helpful the Professionals may be, it's better to speak with those with first-hand experience.

The past 18 months has been a roller coaster of emotions. Throughout that time, Mum has constantly recurring Urinary infections and chest infections. Because of the AD, it's sometimes very, very difficult to get her to drink sufficient quantities to maintain her hydration and to help keep the Urinary infections at bay. Mum is incontinent and on occasions, doubly so - which again results in Urinary infections; even though I constantly ensure her personal hygiene is maintained to a very high standard. All in all, it's a constant battle of repeated Antibiotics for infections. In addition, each time the infections occur, the AD symptoms become more severe. She has many days when it is extremely difficult to rouse her, she presents in an almost coma-like state.

Prior to the onset of the AD, Mum had a long history of mental health problems, i.e. obsessional washing, which tended to rule her life. So, at times, in her brighter moments, it's difficult when she returns to her old habit of wanting to repeatedly wash - which becomes even harder when she can't remember that she's only just washed them!

For some months now, Mum seems obsessional about folding everything - from tissues, clothing, etc. Which is very difficult when you are trying to get her to use the toilet and all she appears interested in is folding the toilet tissue! When I ask if she has 'finished', she will reply 'nearly' - then on entering the toilet I find that she means she's nearly finished her 'picture', as she refers to it, with the toilet tissue. Does anyone else have this problem?

Toileting is very time consuming, I can easily tell when she needs to go, she becomes agitated etc - and to be blunt, the odour is unmistakable, however, she will still say she doesn't need to go. (This may also relate to her old obsessional problems, when she hated going to the toilet and would take a bath each time she did). Then of course, having persuaded her to 'try' several times and she fails to go, the inevitable incontinence problem happens - and she will say, 'who's done that'! And it's bath time once again! If you didn't laugh about it, you would break down and cry.

In her brighter moments it's very difficult to find things for her to do as her mobility is bad and her co-ordination and balance is very unpredictable. And of course, her concentration is zero when given a simple task.

I am very grateful for the three days Mum attends Day Care. Although, over the last few weeks, because of repeated infections, she has been unable to attend. And it becomes very tiring.

Anyway, that's all for now. I would be very interested to learn if any other carers are experiencing similar problems. And how at time you cope, without banging your head up the wall! - but I still love her!

[Norman]

HI Casselle
and welcome to TP.many things in your posting are common to many of us on this site.
I am sure you will get many answers from carers looking after Mums.
Post when you feel the need
Best Wishes
Norman

[connie]

Hello Casselle and a warm welcome to TP. Join the club, we all bang our heads against the wall sometime or another.

You may find you get more direct replies if you post on the main section of the forum: Support for people with dementia and their carers.

Don't worry though, we will find you, just carry on posting. Connie

[CassElle]

Newcomer to Talking Point

--------------------------------------------------------------------------------

Hi, I am a newcomer to the site - taken me a while to fathom out how to post onto the Forum; let's hope I get it right

I am full-time carer to my 76 year old mother who was diagnosed initially with Vascular Dementia following a brain scan (shortly after having part of one of her lungs removed through Carcinoma), and then subsequently, following a further brain scan, with Alzheimer's 12 months ago. Having successfully overcome the Carcinoma it seemed a very cruel blow to then be stricken down with AD. Since that time she has also developed Diabetes.

This site has been a much welcomed find; it's been very helpful to read postings from other carers experiencing similar difficulties to myself. No matter how helpful the Professionals may be, it's better to speak with those with first-hand experience.

The past 18 months has been a roller coaster of emotions. Throughout that time, Mum has constantly recurring Urinary infections and chest infections. Because of the AD, it's sometimes very, very difficult to get her to drink sufficient quantities to maintain her hydration and to help keep the Urinary infections at bay. Mum is incontinent and on occasions, doubly so - which again results in Urinary infections; even though I constantly ensure her personal hygiene is maintained to a very high standard. All in all, it's a constant battle of repeated Antibiotics for infections. In addition, each time the infections occur, the AD symptoms become more severe. She has many days when it is extremely difficult to rouse her, she presents in an almost coma-like state.

Prior to the onset of the AD, Mum had a long history of mental health problems, i.e. obsessional washing, which tended to rule her life. So, at times, in her brighter moments, it's difficult when she returns to her old habit of wanting to repeatedly wash - which becomes even harder when she can't remember that she's only just washed them!

For some months now, Mum seems obsessional about folding everything - from tissues, clothing, etc. Which is very difficult when you are trying to get her to use the toilet and all she appears interested in is folding the toilet tissue! When I ask if she has 'finished', she will reply 'nearly' - then on entering the toilet I find that she means she's nearly finished her 'picture', as she refers to it, with the toilet tissue. Does anyone else have this problem?

Toileting is very time consuming, I can easily tell when she needs to go, she becomes agitated etc - and to be blunt, the odour is unmistakable, however, she will still say she doesn't need to go. (This may also relate to her old obsessional problems, when she hated going to the toilet and would take a bath each time she did). Then of course, having persuaded her to 'try' several times and she fails to go, the inevitable incontinence problem happens - and she will say, 'who's done that'! And it's bath time once again! If you didn't laugh about it, you would break down and cry.

In her brighter moments it's very difficult to find things for her to do as her mobility is bad and her co-ordination and balance is very unpredictable. And of course, her concentration is zero when given a simple task.

I am very grateful for the three days Mum attends Day Care. Although, over the last few weeks, because of repeated infections, she has been unable to attend. And it becomes very tiring.

Anyway, that's all for now. I would be very interested to learn if any other carers are experiencing similar problems. And how at time you cope, without banging your head up the wall! - but I still love her!

[CassElle]

Many thanks for your replies, Norman and Connie. As I said earlier, I'm a little unsure of how to post items correctly. Could you pls. explain, after clicking on Discuss on main page, what I should be doing from there to put my comments in the section you mention, pls. Connie.

My first message I just clicked on 'New Posts'. Then, after reading your response, in that section, I clicked on the RH side which had the title of the forum you mentioned. I copied my original message in there, but when I checked, I ended up with two copies of the same message, both under 'New Posts' - confused? So am I.

Sorry to be a pain - can you pls. explain what I'm doing wrong

[Sheila]

Dear Casselle, yes, I recognised my own Mum in nearly all the things you mentioned. Sadly it is often part and parcel of the illness a lot of the time. Incontinence causes infection which causes more confusion and also drowsiness. That means less fluids taken, so round you go again. Resistence is lowered by constant urine infections, so they pick up chest infections, confusion, etc, round you go again and so on. Nightmare! Mum also fiddled, folding stuff, including the washing I had just hung out to dry, all the clothes in her wardrobe every night, and yes the loo roll and tissues etc. It is a difficult illness to cope with, I do hope that posting here will help you feel you are not alone with these problems, please keep posting. Love She. XX

[Jude]

Dear Caselle,

Welcome to TP.

Having spent a significant amount of my recent life sitting in bathrooms with my mother, I understand exactly how you are feeling. I think 47 visits to the loo in one day was her record.....

I had to hide all the toilet rolls in the end, as I would find them split up into little squares all over the house - under beds, in wardrobes and even inside her slippers. This made washing tricky as every article of clothing had to be inspected before it went into the machine.

If you only leave one loo roll available at a time, you can minimise the amount of tissue buildup around the house and recycle those little mountains of squares as you find them.

Do keep posting - you aren't alone with these problems.

Best wishes,

Jude

[storm]

Dear Caselle, You could be descibing my mum in law we have tissues everywhere but at least they are all folded nice and neat! I have discovered that if i give her a box with lots of old trinkets necklaces and such like she will sit happly for ages, as for the toilet problems itake her at set times and hope for the best sometimes lucky but mostly not! welcome to T/P STORM

[Nada]

Hi everyone

As this thread was running in two sections of Talking Point, I've merged it into one. Hope that's not confused everyone further!

Best wishes
Nada

CassElle
Don't worry - as the others have said, just keep posting. If you copy posts you will end up with two versions. But it doesn't matter.

[Kriss]

Hi CassElle

welcome to TP! The tissues theme seems very common - either folded to the nth degree of neatness or shredded into tiny pieces. I was pleased that Dad went with the folding not the tearing. Aunt too has her moments of folding. On the incontinence problem Aunt uses Boots Pull-ups - they seem like pants to her and are comfy but do minimise the problems.

Kriss