Examples of unusual behaviour that we would love to have input on ...

[caretoshare]

I think the toilet paper and pads scenarios probably date from wartime or post-wartime fears of 'not having enough'. Separate sheets popped everywhere could be like little hoards in case they run out? Probably in wartime people used any scraps to write upon. I think it is linked with a feeling of wanting to be clean - also makes complete sense if you fear your supplies may run out. Every little scrap had to be preserved in the kitchen and recycling had a strong meaning then.
As for the chocolate and sweets - they all do that! My caree has a little squirrel hoard between her armchair and the wall with telltale flakes on the carpet. Hey - at least why not live for the moment and enjoy all the cheats you can when father time is your enemy! Bless us all - for sure! x

 

[Tatiana]

My MiL does all kinds of odd behaviours - but fortunately nothing dangerous as she did whilst living at home. For instance, she would go into the kitchen and turn the gas cooker on but not press the ignition. Or put a dry pan on the flame and walk away, or once, a tea towel. All kinds of awful stuff that FiL (also with dementia) had to watch out for. Now they are both (safely!) in a carehome, the scope for dangerous behaviour is almost nil. Stuffing the loo with paper or pads is fair game, wanting to touch everything rather than just look (doesn't bother me if she prods my chest or pats my earrings) filling her handbag with all kinds of strange things (cutlery, remote controls, food) and recently, if she sees a magazine with a celebrity face on the cover, she'll say 'I don't want her looking at me!' and puts the magazine face down, underneath her foot. To be honest, I don't even try to understand why she does what she does, just make sure she can't hurt herself or anyone else. And yes, both inlaws love cakes, chocolates and puddings, but as they need to gain some weight I can't see the harm.

 

[barryg]

The best advice I can give is to be flexible and think laterally. Don't sweat the small stuff. As with children, you spend a lot of time fretting, but if you just let them happen things often work out in the end. Trying to get your nan to act normally is futile. I don't think you will ever understand why she behaves oddly. She is in a world of her own. Your best chance of understanding her is to enter her world, spend time listening to her and being guided by her as though she were a tour guide. Being a bachelor, becoming a full time carer for my mother is the most rewarding thing I have ever done.

Toilet rolls and milk - take the half used stuff home with you and leave fresh rolls/bottles for her.

Questioning/Arguing - don't do it! You will never convince her.

Mouth wash/toilet cleaner - It may be wasteful, but putting up with it is better than arguing, and the phase will probably pass within weeks or months.

Washing/ changing clothes - be creative. I subtly change my mum's knickers when she is on the toilet. Or I say 'Oh, while we're here in the bathroom, would you like a nice warm shower?' If she doesn't, I don't try to persuade her. Does it really matter if your nan only bathes once a week? A quick body wash in between may be good enough. Get care workers to visit for washing/bathing - the best time is probably first thing in the morning. A trip to the swimming pool or to the sea would give you an opportunity for changing clothes and getting her clean.

Fluids - My mother is also reluctant to drink when prompted, but will often pick up and drink from an unattended nearby cup. Making and drinking a cup of tea together usually works. (At one stage she would make about 10 cups of 'tea' at a time for non-existent visitors. The 'tea' was often a horrible mixture of anything at hand - tomato sauce, coffee granules, orange squash, etc.) Leaving plenty of bottles at hand for your nan is a good idea.

Overeating - Don't leave so much food out for her. You will have to visit more often. Eat together as often as you can. Invite her for a family meal.

Being there - Soon you will have to make the decision whether to put your nan into a home or become her full time carer yourself. She cannot be supported at home indefinitely without a full time carer. Personally I've found caring the most rewarding thing I've ever done. But it is something only you can decide.

 

[Jshutuk]

My dad is in early stages of vascular dementia, OC and memory problems, so above behaviours really helpful. I am reading a really good fiction book 'Elizabeth Is Missing' by Emma Healey, didn't know it was about an Alzheimer sufferer,;the story is told through her eyes, from her perspective, it isn't heavy, sometimes funny, poignant and it is really giving me an insight into her world, her thoughts, feelings and responses.

 

[dede5177]

confusion and memmory loss

My lovely nan has vascular dementia and does things that my mum and I cannot fathom and we'd love some ideas as to why ....she only uses half a toilet roll and then moves on to the next, stacking them up...she does the same with milk, uses half and then puts it back and opens another. She goes through bottles of mouth wash a week and toilet fluid but hates to be washed and gets very angry if questioned about why she is still in dirty clothes and has not out on fresh ones laid out for her. She is a nightmare to try and get fluid down so is always having water infections...we have tried many things like giving jellies for extra fluid, leaving different bottles directly by her, writing cheeky notes from the grandchildren to remind her to drink....she also loves sweet things so much more than she did and is really putting on weight by sneaking huge spoonfuls of jam etc, and will eat all the food left out for her in quick succession. Mum and I are struggling a bit as we cannot be there all the time as we have jobs and families and neither of us have siblings to help carry the burden. We'd just like to try and understand a few things to try and help her ...we desperately don't want her to go into a home, she would hate it so we are determined to go this alone and have had assessments for aids etc done, and have specialist mental health support but want to fathom these things out if possible ....

My mom has dementia and for a long time like many refuses to change clothes wash etc I concluded that having lost her short term memory she thinks she has done these things when she has not, ie I have to take mom to get her changed for bed and then remove the dirty clothes and after setting the shower she will wash with the soap and dry herself then I pass each clothing item she never thinks she has worn anything for very long! Also remember in olden times the weekly bath and a top and tail daily often sufficed. Make sure mom knows where everything is towels soap hot water and has confidence to use the items. Secondly the toilet roll and the milk I would put down to anxiety both that she may run out so find the next one and the item has become old dirty and not fit for purpose! Finally drinking dementia patients fail to recognise hunger thirst so I use the prompt "I am making a drink for myself do you want one" by the time its made my mom will have thought about it and be willing to try something. I still have to show willing by slurping some myself and she plays with the liquid in her mouth this must never be commented on. My mom likes sweet drinks and always had cordial so apple and blackcurrant made ready to drink in the original bottle, and water in a jug like a brita filter jug as she forgets how to use the taps because the design has changed over the years and those easy turn off taps don't look like taps to her. if your mom is ok with the kettle ensure that is half full also. but a kettle on the stove is often more recogniseable.

 

[AnneED]

I was quite pleased to be able to read this thread with a slight smile and a feeling of familiarity. I am 'getting there' with my mum's odd behaviours.
Started off using the 'Contented Dementia' theory and now go with my own version of it.
Started off with the 'what will her friends think when she's wearing the same clothes all week' and have moved on to the 'so long as she doesn't smell and they still want to take her to her groups.'
Started off with the 'what can I do to stop her hiding crusts of bread down the side of her chair and in her knitting bag' to 'lets just check for crusts whilst she's in the loo - thank goodness she doesn't have jam on them!'
Started off with the 'Did you see the children this week?' and moved on to 'It must have been lovely seeing the children for tea on Thursday - did you enjoy it?'
Started off with 'oh no there's a mouldy bowl of food in the microwave' and moved on to 'No. 3 on list - check microwave, bread bin and oven for food debris.'
Started off with leaving healthy glasses of juice in front of her at regular intervals and then throwing them away the next day or finding them in the bread bin, and moved on to decaf teabags and sitting with her having a cup of tea and a biscuit - must include a biscuit! - at least 4 times a day in addition to the ones she is happy to drink (breakfast and with lunch)

It is good to figure out roughly why a person does a certain weird thing - yes, the war years and austerity have a lot to answer for! - but sometimes it makes no difference knowing. I did put the cat's 2nd litter tray in the conservatory so she didn't move the one out of the bedroom leaving poor blind deaf cat to poo on the bedroom floor - because the conservatory is where the cat used to have her litter tray.

Found it very hard recently as she has started asking me to take her to see a very dear aunt in the nursing home down the road. The aunt died 8 years ago and never lived there. The fact that the home is 'in the news' due to refurbishment and that Aunt's son is terminally ill are no doubt in the mix but it doesn't help me feeling very emotional as I try and nonchalantly say 'oh we'll be going this afternoon' or 'next time'. After 4 requests during a one day visit, this drove me to saying very gently to mum that Aunt wasn't there, to which the response was 'Well where is she then?' and me saying that we 'had lost my aunt' but it just caused her total confusion so (as we all agree) was not worth it. Better I work out my feelings and how to do it with less pain to myself. Sometimes easier said than done.

 

[Grace L]

That rang a bell with me. When I was a kid, my mother had been trained by her mother to keep sanitary towels and tampons out of sight - they weren't even in the toilet, but concealed in her dressing table drawer. Otherwise, men might see them and that would be a shameful thing. As I got older, from time to time I'd be called upstairs to perform the top secret mission of getting a box of Tampax from her bedroom and passing them through the loo door! Even now that she's living alone I have a struggle to persuade her to stack toilet rolls in the loo: she takes them into the bedroom, hides them there, and of course sooner or later she's caught short. It's the same with Tena pads - they live in a suitcase in the bedroom, never in the most practical place. I wonder if the Tena pads among the socks are something similar?

I remember when sanitary towels were wrapped up in parcels on the shelf (in the shops)
so they couldn't be seen.

My dad was born in the 20's and when he discovered my sister and I had 'tampax' in 'his home'
he was horrified. He asked mum to get rid of them.
They were not in the bathroom, but kept in our bedroom so no-one could see them.
Dad didn't have Alz, just very old fashioned.

MiL Alz, was upset (she happened to be here when home shopping delivered)
and discovered I was buying toilet rolls, and that people would know I've bought them.

I had a huge problem with husband hoarding tissues when he was alive.
I wish I knew why ne needed so many .... and why the folding very neatly...
then shoving them in his pocket, or throwing them in the bin.