Anyone else hate Christmas with Dementia?

For issues specific to caring for someone with dementia.
For over 2 years now, I have cared for my elderly mother who has a diagnosis of Alzheimer's. We are fortunately in the early stages, so Mother wants to keep control of her life and make her own decisions. She resists a lot of help that's offered and tells me she's "not totally away with the fairies, you know!" And she's not, and that's a huge blessing. But she lacks the ability to be organised and plan and make decisions and/or changes her mind several times a day and doesn't remember MAKING an earlier plan or decision so we live in a constant state of fairly unplanned chaos.

Now, on a normal day I can cope ok with this. I can see gradual deterioration and the weekly shop is always a challenge, but we generally get by ok, and as a rule we get on with each other quite well. :) However, the approach of Christmas is pushing me to my limits of coping this year. As an example, we were out shopping today and she announced six times in one shop and one hour that she needed to get wrapping paper and Christmas cards. And six times I reminded her (loudly, because she'd forgotten her hearing aids!!) that she has finished writing her cards (she wrote 3 to quite a few people!) and has already bought about 50m of wrapping paper which should last us for many years to come. :S

As other carers will know, it's the repetitive "drip drip drip" effect of this, hour after hour and day after day and week after week that is the hardest thing to deal with. I feel pretty close to the edge at the moment and am conscious I'm getting ever more tired, irritatable and grumpy towards her, which I detest. It's not her fault. But neither is it my fault.

Christmas-time is stressful enough at the best of times, but does anyone have any helpful tips for surviving it with dementia?! :huh: :-???
DownEaster wrote:
Sat Dec 16, 2017 12:29 am

Christmas-time is stressful enough at the best of times, but does anyone have any helpful tips for surviving it with dementia?! :huh: :-???
Shut your eyes every hour and say out loud, " In 11 days it will all be over!"

Then 10,9,8,7,6,5,4,3,2,1, ............. "Blimey, hurray, it's all over." :D
There are many of us here who find Christmas hard. My youngest son is 38, but a mental age of about 3 because he was brain damaged at birth. He loves all the excitement of Christmas, but most his day services are closed for almost a fortnight, so he's home with me for most of the time.
I'm a 65 year old widow with dodgy health, and sometimes wish I could just cancel it all! My eldest son lives with me, separated from his wife, his lovely little boy will be staying here for a few days, but that means even less opportunity for a break.
In January, I have been known to book a cottage in Dorset for me and my sewing machine, to recharge my batteries!
How much time apart/away from your mum do you get (and can she be safely left on her own at all still?)

I note you posted at gone midnight! To my mind that's a 'bad sign' - either of insomnia or, perhaps, that 'late at night' is the only 'You time' you get....

(That was what it felt like for the few months I looked after my MIL staying with me with fairly early stage dementia, but who was still a 'guest at Hotel Jenny' as I called it! I felt that my 'own' day only started when she was tucked up in bed....usually she went up after the news at ten, but sometimes she simply said 'I'm not tired yet' I had to stay up with her watching yet more telly until she decided she WAS tired enough for me to help her to be and only THEN did I finally 'get my house back to myself'....I nearly always ended up going to bed very late myself, so as to get an hour or so in my own living room, watching the recorded programmes I wanted to watch, and generally finally 'chillaxing'...........and, of course, browsing the internet and posting here.....)

I personally think it's absolutely essential for US to get 'time off' from the company of someone with dementia or otherwise 'dependent' on us. Just as mums of young kiddies need to be able to 'get away' regularly, or else go totally nuts from having to be 'on duty' the ENTIRE time. (Rule number one of caring is 'Carer comes LAST'.....whatever WE want can only happen when our caree - whether baby/kiddie or elderly parent - has everything THEY want....' it's that endless 'jumping up and down' the whole time that gets me......)

Just being 'free' for a while, even an hour or so, is blessed, blessed respite, and MUST be scheduled in during the daylight hours. If your mum CAN still be left alone - or 'parked' at a day centre or whatever - then you can keep your sanity.

However much we may love them (different for me, as it is my MIL, and I'm widowed, so there is 'only me' for someone I don't actually 'love' like a mum, fond though I am of her), love can't keep us 'sane' when we have 24x7 care of someone with dementia.

They DO become like 'elderly toddlers' (!), but with the difference that makes all the difference - toddlers KNOW they don't know and need 'mum for everything'....but with ET they still think they DO know, and can be incredibly 'wilful' in ways that actual toddlers aren't (or, at least, are small enough for us to strap back in the buggy and wheel them off!)
I found it best to 'go with the flow' and not get worked up - wasn't easy but was doable ! It does help if you can factor in some 'me' time - even just one hour to visit a really nice coffee shop and read the paper whilst indulging in one of the Christmas 'flavoured' coffees and a piece of 'naughty but nice' cake is beneficial.

After all, at the end of the day, does it really matter how many metres of wrapping paper you end up with if it keeps Mum happy?
A very sane view from Susie! And I totally agree about the wrapping paper.

Another mantra that can help is 'Don't sweat the small stuff', worrying about excess wrapping paper (it will get used up in years to come, and you will feel poignant that this was the wrapping paper that your late mum bought.....)

I think it's useful to remind ourselves that unlike with children, we can't 'teach' the elderly with dementia, so there is no point trying, and also that it isn't 'setting a bad example' or whatever if they want things they don't need or have already got.

Also, it can distress (or 'anger') them to be 'corrected' as it only reminds them how forgetful they are, and that can be upsetting to them. Better to have more wrapping paper and a mum who hasn't got upset. (or 'angry') being told she's already got some?

You are doing all this to keep them happy, at yes great sacrifice to your own life (however much you love them), so, in a way, not 'fighting' them on such issues is you 'going that extra mile' maybe???

I do hope the both of you can get as much actual pleasure as you can out of Xmas - with every passing year we know it 'could be the last one' and it's SO important to have the best memories we can.

(I'm just agonising over whether to try and get my MIL out of her care home for Xmas dinner with my son and me this year, though she has deterioriated badly since last year - but the ordeal may be too horrible - for her and us, sigh - and maybe it's better to leave us with the 'good memory' of how lovely it was last Xmas to have her there for Xmas dinner, and how she enjoyed herself - and drank half a glass of wine as well - though she did fall asleep in the middle of our sofa Skype session with her son in the USA! :)
Sadly my husband is in a nursing home because of strokes and vascular dementia. He confabulates such a lot. Usually it's nice things he thinks he has done, or been to work etc. I go along with it all. If you heard me, you would think I really believed it! He does. If by any chance it's a very negative thought he has, I try to but it right. Something like, oh darling, I think you had a bad dream, you had your medication late, or something on those lines. Sometimes he will say oh r( Brummie!) . It is hard , but, it's us that get stressed. They forget, that's the problem. Having said that, if he forgets that something horrible has happened that's good. It rolls round my head though.
Just my thoughts on trying to cope with the blasted Dementia. Not sure it will help you.
I've just made the marzipan for the cake (eldest son and grandson have gone beating, M is at his flat). I don't hate Christmas as such, we are not religious and I always call it a Festival for the Family.
I've always been chief cook and bottle washer, and doing the marzipan has been a reminder that I enjoy making (and eating!) the traditional mincemeat, mince pies, cakes etc.
When we lived in the outback of Australia (Google Roebourne, Western Australia) I couldn't buy any suet, so to make sure we had a traditional Christmas pudding I even bought some bones from the butcher and boiled them, and made "suet" by grating the fat!!
Christmas Day was always hot. One year we rode our motorbikes down to the nearby beach, to go for a swim. The sand was too hot to sit on comfortably so we went into the water, like a warm bath.
Then we rode home, turned our airconditioning to cold, and ate our full traditional English Christmas Dinner!
Next job today is making the pastry for the 72 mince pies. I freeze them all raw and cook as required.

PS with regard to the card and wrapping paper problem, why not say "I think we've got enough, but lets buy ONE roll/card, just in case".
PS with regard to the card and wrapping paper problem, why not say "I think we've got enough, but lets buy ONE roll/card, just in case".

Perfect! :)
Oh thank you so much to every one of you, who has commented. I have skimmed through but another night will revisit and inwardly digest your suggestions as they are all very good, helpful, answers!

Yes, it is late and it is indeed because this is my "me time" - it's kind of the only time in the day when my head quietens down and I can THINK. But I am going to try and turn that around over the next few days because being overtired due to not enough sleep is definitely not helping me to cope with life.

Have also tried to adopt the non-correctional approach today - you're right it really doesn't matter how much paper we have in the house as long as she's happy! Have made a little progress (though it's hard as my natural instinct is to cut out waste!) Mother is now happily writing and posting her third lot of cards off to people who've already had them.... she wants to keep the knowledge of her dementia quiet but she can't blame me for this one as it's bound to get people wondering why they are getting three (possibly more) cards from her :lol:

She made me laugh tonight - while rummaging in a drawer looking for stamps or cards or something, she found the book the Scottish Government have kindly provided "living with dementia" and remarked to herself that maybe she should read it sometime. She got it a year ago but I don't imagine she ever has read it... or ever will.... but you just never know!!

Will be talking to my two siblings over Christmas as I need more help with this whole carer thing. They don't live nearby but they do need to do more to support me, and not just when it suits THEM. I'm just not sure what they can help with, but it kind of makes it harder that they are able to go about their normal lives - going out for the day, planning nice foreign holidays and weekends away etc - while I have done ALL the adapting and giving up of livelihood, freedom, home, community, etc. I was always closest to my parents and I always knew I would do for them what my siblings never would - and I would choose to do the same all over again if I had to - but boy is it hard at times. I guess everyone reading this knows that so I'm preaching to the converted. It does help, though, just to sound off and talk to other people who understand - REALLY understand. So thanks for your thoughts and suggestions and just for listening.... :roll: