Q&A: Christmas and dementia – sharing practical advice

Bluebell 50

Registered User
Mar 8, 2016
6
0
My parents are determined to stay in their own home and whilst that is getting increasingly difficult we have decided the easiest way is for me to do a 5 hour round trip - that I do every week. A day early and cook a roast. Whilst I will not get to spend much of a Christmas it will reduce stress and confusion all round if it is essentially just another day and I will do Christmas with hubby when it suits us.
Hoping roads will be nice and quiet for a smooth journey
 

Christy21

Registered User
Oct 9, 2016
30
0
Dads passing so close to Christmas means I will not be giving him a present this year , so I have a candle & will light it.
As for Aged mother “ the mantra” - “well I never liked Christmas anyway !” Is getting a good outing. A scarf for aged mother & some sweets.
Meanwhile I worry about the staying over of Mum! No carers in 4 times a day to help!
Mothers adversity to cleanliness & general mood plus her incontinence mean a lot more work - add to that the fact that Dads passing last week & me not rushing the funeral through before Christmas & New Year adds to the festivities!

I’m wrapping the single mattress in the safe room with plastic decorators sheets as waterproof mattresses can fail !

wish me luck
Xx

it sounds from comments that you are much further on than my wife with PCA. Two things may be useful:- nurses told me that A&E would take no notice of our Living Will or Advanced Direction. So we got the ‘Red form’ from GP. Do not resuscitate. Also join Dignity in Dying who campaign for control over end of life. It is scandalous (in my opinion) that people are kept alive in pain when the want to die.
 

crazyone

Registered User
Dec 14, 2017
53
0
My sister and I have always taken it in turns having my Dad on Christmas day, but he went in to a home a few weeks ago, and we have found that when we take him out, even for a small walk, it upsets him when we take him back. We get 'this isn't my home. I don't know where I am. What am I doing here?' etc. and he is unsettled then for We have taken the decision this year that he will be less upset if he stays at the home on Christmas Day. I will visit first thing, followed by my brother, then my sister in the afternoon, but I can't help but feel guilty. My head knows it's best for Dad - but my heart says different.
 

Skeet

New member
Oct 20, 2019
7
0
I have Dementia. I feel this holiday season has been stolen from me. The family wants to simplify and delete many of our yearly traditions. They say it's easier for them. It probably is. But I feel so left out and hijacked. This is also the time of year I lost my precious Mom 2 yrs. ago. Other than the Bible, a book called "I Can't Remember" by Jo Dorn, resonated with me the most. I recommend it for people in my position and their caregivers. It's on Amazon. When I read it, it makes me feel that I have the strength to go the distance. I got a copy for all of my family members for Christmas. Perhaps they will understand my feelings when they see they are the same feelings of others with Dementia.
 

Tilly1958

New member
Jan 28, 2019
3
0
Mum moved into residential care in October after 5 weeks in hospital. She keeps asking if she’ll be home for Christmas so I tell her I will pick her up on Christmas Day and Boxing Day. She will spend the days with us and I will take her back to the home on an evening. I am dreading taking her back each day as I fear she will get upset when she realises she is not going ‘home’! As we all know our PWD is not referring to their last home but one long ago, before dementia robbed them of their memories!
We’ve not told mum her move is permanent as it will cause her distress. We remind her she is safe and well and she sees my dad every morning and either me, my sister or brother everyday after work. Tips on managing tricky situation would be welcome. Merry Christmas to everyone.

I am in exactly the same boat as you and was going to ask the same question. I’m really worried about disrupting my mum’s routine at the home and also taking her back at the end of the day.
 

Joancz

Registered User
Oct 2, 2019
35
0
Many years ago I worked in a nursing home and a relative bought pretty China mugs and filled them with just a few chocolates for each member of staff. A bit of a different present that everyone was pleased to receive.
What a lovely idea. Will think of something along those lines x
 

crazyone

Registered User
Dec 14, 2017
53
0
I am in exactly the same boat as you and was going to ask the same question. I’m really worried about disrupting my mum’s routine at the home and also taking her back at the end of the day.
This is exactly why we are visiting rather than bringing Dad out for lunch. A hard decision.
 

Joancz

Registered User
Oct 2, 2019
35
0
It is our first Care Home Christmas too. After much thought and knowing that the staff get umpteen tins of sweets or biscuits, we have bought a dozen individual bottles of Prosecco for the staff that work in OH's unit + the Cook and Activities Coordinator. I am going to add a couple of soft drinks for anyone who does not drink alcohol.
Someone's suggested prosecco, its very popular at Christmas, I can imagine they'll be inundated with chocolates, grest idea!x
 

White Rose

Registered User
Nov 4, 2018
679
0
I have Dementia. I feel this holiday season has been stolen from me. The family wants to simplify and delete many of our yearly traditions. They say it's easier for them. It probably is. But I feel so left out and hijacked. This is also the time of year I lost my precious Mom 2 yrs. ago. Other than the Bible, a book called "I Can't Remember" by Jo Dorn, resonated with me the most. I recommend it for people in my position and their caregivers. It's on Amazon. When I read it, it makes me feel that I have the strength to go the distance. I got a copy for all of my family members for Christmas. Perhaps they will understand my feelings when they see they are the same feelings of others with Dementia.
You write very well @Skeet, have you tried telling the family how you feel, it seems a shame to deny you your traditions and leave you out of things. I'm a carer (my partner has Alzheimer's and sadly he's not able to articulate anything much these days), I read a book called 'Before I Forget by B. Smith and Dan Gasby and found it very helpful. Good luck to you and Happy Christmas.
 

White Rose

Registered User
Nov 4, 2018
679
0
I have vascular dementia and find it very hard this time of year, I am a career for my Husband and have other health problems. My Mother died near Christmas, so did my Husbands father years ago but still hurts. I am trying to fit in lots of Christmas social engagements but it is becoming overwhelming. I do not like to disappoint people though.
Goodness, I do hope you get some help on a daily basis, it sounds like you have a lot on your plate. I'm sure people will understand if you can't fulfill all your engagements, tell them how you feel xx
 

White Rose

Registered User
Nov 4, 2018
679
0
I'm lucky as I'm still functioning quite well. My fear is not that I won't remember the grandchildren's names or the gifts we have for them. I am fearful of losing my temper as this seems to be getting worse and more frequent for the most trivial of reasons. I was warned that things may change but I did not think it would happen as quickly.
Yes my memory is getting less and less reliable, but it's this irritation for next to no reason that concerns me the most at present. I've always been known for being calm and even tempered and you can imagine how difficult it is when I feel that my emotions are out of control. It's not fair on the family or myself and I can't seem to be able to regulate my feelings of irrational anger and frustration sometimes.
Thanks for listening.
D.
If they understand anything about dementia they should know that irritation and losing your temper is part of it and not the real you. My PWD was like you before Alzheimer's, very laid back and never lost his temper, now we have regular outbursts and swearing under his breath (he never swore before), I just accept that it's not him it's the disease, very sad though.
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
My parents are determined to stay in their own home and whilst that is getting increasingly difficult we have decided the easiest way is for me to do a 5 hour round trip - that I do every week. A day early and cook a roast. Whilst I will not get to spend much of a Christmas it will reduce stress and confusion all round if it is essentially just another day and I will do Christmas with hubby when it suits us.
Hoping roads will be nice and quiet for a smooth journey

What a smashing daughter you are.
For every person enjoying the festivities on 25th December, there will be someone, somewhere working and not partaking of the Christmas food, drink and fun.

I get a bit cross sometimes because we are bombarded with "how to have the perfect Christmas", for instance the BBC trailer at the moment with people 'choosing' how to spend their Christmas Day.

What self indulgent twaddle and demeaning to everyone who has no choice other than to work - or as in your case put duty before spending time with your husband - and I know you don't think of caring for your parents as duty, any more than I do for my mum, but I wanted to illustrate the point.

I work Sundays, Bank Holidays and over Christmas/New Year, so while half the nation is out there playing and having fun, the other half are servicing their requirements. And that is the lot of a carer, putting someone else's needs before your own, and that is why I think you are a smashing daughter!

The roads will be empty because half the nation will be filling their stomachs and watching The Queen, so have a good journey @Bluebell 50 and treasure your mum and dad, the time with your husband celebrating your Christmas will be all the more special.

And I'm really sorry to have a rant, it isn't what I intended, but once I started it just erupted.
I'm a glass half full person, but sometimes it just gets your goat!
 

Jancun

New member
Jan 10, 2019
8
0
I am defeated by dementia. My husband (65) has an acquired brain injury 9yrs and was diagnosed with dementia in Dec 18. Needless to say last Christmas was stressful and anxious for all of us except my husband. He was bemused for most of it and really didn't get what was happening. He suffered a subdural hematoma craniotomy after a fall in May 19 and has declined logic and cognitively. Christmas now is about "why an I doing silly things now?" I've written cards to friends, baking, putting up decs. He isn't concerned at all about gift giving, meeting grand nieces or family. I have decided this yr not to give him a present apart from some fleecy socks that have grip soles. Does any one else feel less inclined to do presents? His mum (93) also has dementia although she gets it. I am inclined also not to meet the extended family for boxing day also as they a is bound to cause confusion. Also I BOUGHT Christmas dinner this year from "Cook" what a relief that was.
 

Bluebell 50

Registered User
Mar 8, 2016
6
0
My parents are determined to stay in their own home and whilst that is getting increasingly difficult we have decided the easiest way is for me to do a 5 hour round trip - that I do every week. A day early and cook a roast. Whilst I will not get to spend much of a Christmas it will reduce stress and confusion all round if it is essentially just another day and I will do Christmas with hubby when it suits us.
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
I am defeated by dementia. My husband (65) has an acquired brain injury 9yrs and was diagnosed with dementia in Dec 18. Needless to say last Christmas was stressful and anxious for all of us except my husband. He was bemused for most of it and really didn't get what was happening. He suffered a subdural hematoma craniotomy after a fall in May 19 and has declined logic and cognitively. Christmas now is about "why an I doing silly things now?" I've written cards to friends, baking, putting up decs. He isn't concerned at all about gift giving, meeting grand nieces or family. I have decided this yr not to give him a present apart from some fleecy socks that have grip soles. Does any one else feel less inclined to do presents? His mum (93) also has dementia although she gets it. I am inclined also not to meet the extended family for boxing day also as they a is bound to cause confusion. Also I BOUGHT Christmas dinner this year from "Cook" what a relief that was.

It's not obligatory to do the Christmas thing; mountains of food, gifts, 'mine hosting' family that generally stay away the rest of the year. Do what is right for you.

I couldn't face Christmas 2017, when mum moved in with us after all the trauma that came our way.
We only bought gifts for the children and grandchildren, none for us. OH bought a pop-up tree and - himself - cooked a frozen three bird roast and that was all we could cope with.

Christmas 2018 saw a slight improvement - turkey cooked, but bought cake/mince pies and still the pop-up tree, we were still dealing with the family dispute.

This year proper tree, cake baked yesterday and onions pickled, so I guess we have transcended the 'Bah Humbugs'. I quite miss the pop-up tree though!

Making the decision not to do Christmas is very empowering, simply because you have made a decision and like you say, it's a relief. Put your feet up, eat chocolate and watch lots of TV, best wishes from me
 

65Maisie

Registered User
Mar 14, 2019
10
0
Dads passing so close to Christmas means I will not be giving him a present this year , so I have a candle & will light it.
As for Aged mother “ the mantra” - “well I never liked Christmas anyway !” Is getting a good outing. A scarf for aged mother & some sweets.
Meanwhile I worry about the staying over of Mum! No carers in 4 times a day to help!
Mothers adversity to cleanliness & general mood plus her incontinence mean a lot more work - add to that the fact that Dads passing last week & me not rushing the funeral through before Christmas & New Year adds to the festivities!

I’m wrapping the single mattress in the safe room with plastic decorators sheets as waterproof mattresses can fail !

wish me luck
Xx
Hi I’m sorry to
Hear your Dad passed away, I lost mine to Alzheimer’s at Easter is year. Mum mum has vascular dementia and is in a care home. She used to love Christmas but as you say now it’s just another day of her staying in bed. The care home will try to get her up but can’t insist. It’s so sad because all of her past Christmas have now disappeared in the big hole in her head. I will buy her grandchildren vouchers for her but she hasn’t a clue who they are. At least last year I had dad to listen to moan on how awful the food was, didn’t like his new jumper or the world in general really. Most of which was my fault. like many people on here I hate Christmas it’s all just to sad. I will light a candle for him and my sister who died forty years ago now. Take care of yourself at this both awful and hopefully joyous time x x
 

Duncan Lyon

New member
Oct 29, 2019
4
0
If they understand anything about dementia they should know that irritation and losing your temper is part of it and not the real you. My PWD was like you before Alzheimer's, very laid back and never lost his temper, now we have regular outbursts and swearing under his breath (he never swore before), I just accept that it's not him it's the disease, very sad though.
Hi Rose, they are all being very patient but it's hard for everyone, I know. It's just hard to hear myself and realise what I'm doing to the ones I love and who love me. Not being able to find the right words or remember the names of people I've known for years, is baffling sometimes. It's early days for me, and I must admit it's frightening as well as being inevitable.
Cheers.
D
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
I'm lucky as I'm still functioning quite well. My fear is not that I won't remember the grandchildren's names or the gifts we have for them. I am fearful of losing my temper as this seems to be getting worse and more frequent for the most trivial of reasons. I was warned that things may change but I did not think it would happen as quickly.
Yes my memory is getting less and less reliable, but it's this irritation for next to no reason that concerns me the most at present. I've always been known for being calm and even tempered and you can imagine how difficult it is when I feel that my emotions are out of control. It's not fair on the family or myself and I can't seem to be able to regulate my feelings of irrational anger and frustration sometimes.
Thanks for listening.
D.
My Dads eyes always lit up at seeing me though he got confused right at the end. The joy he expressed when young children visited relatives & the cognitive boost that brought amazed me throughout his journey.
The heart it is believed has as many memory cells as the brain; with my own personal experiences I truly believe that. Love transcended all even at the end of Dads journey.
Your love for family will as well I feel confident of that
Merry Christmas my lovely, & enjoy the joy of youth at Christmas xx