Christmas... decisions, decisions

[Redwitch]

Hi Folks, not been around much for a while, trying to take stock of everything that has happened.

Mum ws sectioned at the end of March (nearest available bed an hour away ) after best interest;s meeting it was decided that Mum should move into a CH. Found a nice one 2.5 miles away, the staff are lovely and we still try and take Mum out every weekend. After 3 really positive trips out last weekend was a nightmare. grumpy, angry need I say more. It has surfaced that Mum has started getting aggresive and argumentative with both carers and other residents, having apparently hit both over the past few weeks.

Have been thinking a lot about Christmas recently. Last year was the first one without Dad , this year will be without eldest daughter (just married and spending it with her in-laws) and without Mum , unbearable. I wanted to bring her home for Xmas day, but I have worried about what she would be like, would she be uncomfortable, would she struggle to go back, and now the aggression has surfaced again. I feel selfish for not wanting Mum to spoil the day... but to be honest it will be a rubbish day any way. What should I do?

 

[TinaT]

Cook yourselves a really lovely meal, visit mum for a few hours and then come home and drown your sorrows in sherry.

It will be the first Christmas without my lovely Ken. My mum still lives in her own home (with a lot of help and input from me) so I will at least have one other to cook for.

I can't face the prospect of trying to be jolly when inside I'm very sad
xxTinaT

 

[Witzend]

Hi, Redwitch,
Christmas can be a b*gger when you chuck dementia into the mix, can't it? Do you think your mum is capable of enjoying the day with you, or is that just what you hope?
I have posted about this elsewhere recently but we brought my fil here from his CH the first year (against the CH's advice) and it was a bad mistake. We had thought and assumed he'd enjoy it, but he was worried and fretting most of the time about where he 'ought' to be and what he 'ought' to be doing. The following year we left him where he was, in his safe routine.
Because of this experience I've never brought my mother here for Christmas day - although we go to see her in the morning with her prezzies. She never knows it's Chr. day and didn't for a couple of years even before she went into the CH.

I do hope it won't be a rubbish day for you, despite missing your dad and your daughter. Our elder won't be here either this year - off to see boyfriend in Haiti, where they both worked for a couple of years after the earthquake. Still, must confess that much as I'll miss her I'm glad I'm half looking forward to not having a massive houseful for a change. In the past we've had up to 9 humans and 3 dogs - all staying over, and no, we don't have a huge house.

Might add that one of my most upsetting Christmas/dementia experiences was with my mother, a few years before she went into the CH. She was going to come, only just before I went to pick her up she said she'd rather stay at home, it was all too much fuss and upset. So I went anyway, taking her presents and some nice food.

Next day, Christmas Eve, she phoned me in a furious rage, saying what was she doing all on her own on Christmas Eve, why hadn't I invited her, I was a dreadful, evil daughter, she was cutting me out of her will, etc. etc. Useless to explain that of course she'd been invited - she simply couldn't remember. I don't know when I've ever been so upset.
Sometimes it seems that whatever you do with this horrible illness, it's wrong.

Still, pour another glass of wine or a nice cold G&T, put your feet up and enjoy all the rubbish on the telly....

 

[Phalk67]

Hi,

My father in law was the same, aggressive towards family and staff. Although I wasn't involved in his care since they lived 3 hours from us I distinctly remember my mother in law saying that they used to give him some drugs to calm him down. They tried different drugs in different dosages until they found the right balance so he would be calm enough but not asleep. I must stress it didn't always work though. I don't know the name of the drug or if it would be suitable for your mum but I'm sure you can ask and reach a decision based on what they advise you.

Best of luck

 

[garnuft]

Oh no! I would listen to Witzend, the voice of wisdom and experience. My Mam is still at home but comes to mine for Sunday lunch (I go every day, mind you but she comes to mine for lunch on Sundays) Every sunday I ring at noon, every sunday she says in a cross voice 'Well! I thought I wasn't going to be asked. I can see to myself.' Every sunday I want to say 'OK Mam, stop there then! no skin off my nose!' instead I cajole. She is always lovely when she gets picked up, she loves my Other Half and remembers my lads, no strangers.
Lately, last every-other-sunday, my big sis has had her. Mam hates her hubby, that she hasn't forgot. She hates my middle sisters hubby too(she had her for Xmas last year and brought her home un-fed and in a huff Xmas morning, didn't tell us there had been a problem). They (sisters) are now fighting ,each wanting Mam for Xmas(last Xmas?). Me and mine are doing a jig. My conscience is free enough to not worry.
Poor Mam.
Visit your Mam but leave her 'at home'. It's what I would want too.

 

[Margaret W]

My mum showed no signs of agression (but could be bloody minded when it was justified), so we had her to our house for Christmas dinner. We worried like hell. I had earlier taken her out of the home to get a new hearing aid, and that in itself was a major problem cos she thought she wouldn't be allowed back to the care home. Her face when she arrived back to the welcome from the staff was a picture I will never forget.

So she came to us for Christmas lunch. And tea. She knew the kids (both late twenties) and she tolerated their partners (both nice young men), and it all went fine. But she got fidgety about 6 p.m. Shouldn't she be going home? Where was home? She wasn't sure if she had a home any more. Was there somewhere who would let her sleep for the night and maybe I could help her find somewhere else the following day. I told her she had a home at the Pavilion, they would be looking forward to having her back, so off we went, and in true style they welcomed her back as before.

So I would say have your mum to come to you, but not all day. It is too long. If you can organise it, have the meal virtually ready when mum arrives. Sit her at the table with a good slug of sherry, and serve up pretty quickly. Pull some crackers, enjoy your meal, have a cup of tea after, and take mum back pretty pronto. She will remember the joy of being with family, but not long enough to start being argumentative. My guess, I could be very wrong.

Love

Margaret

 

[miggie]

I too am trying to decide what to do about Christmas.

Mum has been in a Care Home for two months and, after the first couple of weeks when she did not leave her room, has now settled quite well. However, she does not think she is in a home but is still in hospital so we do not contradict or correct her but just say it is a convalescent home and that seems to satisfy her.

She no longer begs or demands to go home but just says at every visit "it won't be long before they let me come home" and we just say "yes, when the doctors say so" or "yes when you are a bit stronger".

I don't want to take the risk of unsettling her by bringing her to my house for Christmas Day but I am trying to decide what to do about visiting the Care Home on that day.

I fear that if we visit she will get upset that she is not with us on Christmas Day and if we don't visit and other residents get visitors will she get upset because no one has been to see her.

I know no one can help me make the decision but any thoughts / experiences would be welcome.

 

[sunray]

Christmas is a mixed blessing

Last year some of th family had lunch with Ray in his nursing home and the rest saw him during the course of Christmas Day. I visited Mum in her nursing home in the morning. This year Ray is no longer with us ( he died on 19th September) and chances are Mum will not still be going as she is seriously ill now too. Add to this our older son has left his family and you get the picture.

Christmas is seen here as a "family holiday" and that puts such pressure on us all to shape up for the occassion. At the moment I feel like doing nothing, running away from the whole thing but closer to the time will probably decide on lunch one place, tea back home. Who's to say what is the right thing to do? I would say whatever suits you.

Sue.

 

[KatieB]

Dementia and Christmas...nightmare. Last Christmas was a disaster. This year we will visit my folks (both have dementia, both living at home) in the morning and then my husband, son and I will head to our own house for a lovely quite (dementia free) day. We can't wait. I know that if my parents knew how things were, they tell me to leave them at home. I hope everyone manages to have a stress free christmas. Katie

 

[Witzend]

I don't want to take the risk of unsettling her by bringing her to my house for Christmas Day but I am trying to decide what to do about visiting the Care Home on that day.

I fear that if we visit she will get upset that she is not with us on Christmas Day and if we don't visit and other residents get visitors will she get upset because no one has been to see her.

I know no one can help me make the decision but any thoughts / experiences would be welcome.

I was worried about this, too, with both mother and fil, but in practice they honestly hadn't a clue it was Christmas day. Do you think your mother will be aware? Even when people were saying, 'Happy Christmas!' and giving her presents, and there were all sorts of decorations up and crackers with dinner, my mother would say vaguely, 'Oh, is it Christmas?' and forget again in 2 seconds.

Before she went into the CH and had started to refuse to leave her own house at all, siblings and I would take turns to spend Christmas with her, always staying overnight so we even did her the usual Father Christmas stocking. But she was still unaware all day, unless someone reminded her, and would wonder why someone was giving her a present. And to be honest, even this was mostly too much fuss and upset for her, only of course we couldn't bring ourselves to leave her on her own at Christmas.

Nowadays we go and see her in the CH in the morning, for maybe 45 minutes before their lunch (45 is usually as much as she can cope with), taking her presents, and although she was often asking to go home, especially the first year or two, she's never said a word about being in the CH on Christmas Day. This way I find we can have a nice, relaxed day, since we never have our Chr. dinner till around 5 anyway - so much less of a rush.

Of course everone is different and so much depends on what stage a person has reached, but these are our experiences.

 

[Bedelia]

I agonised over this last year, which was my mum's first in care (she'd been there since September 2011). During that autumn, I had continued to take her out for lunch on my weekend visits, as this is something we had always done when she was still at home. However, it had become increasingly difficult, as she never remembered the home when she came back, and getting her back in was very traumatic. (We don't go out at all now; she is physically capable, but psychologically it's too confusing for her - even to go downstairs in the same building to another unit - and gives her more distress than pleasure.)

Like Miggie's mum in the post above, she wasn't aware that she lived in the home, which she thought was variously a hotel, restaurant, or convalescent hospital. For that reason, and in order to help her settle, I had avoided taking her anywhere near her own home on trips out, and quite quickly she forgot that it existed. "Home", in her mind is now her childhood home in another part of the country, which she hasn't seen since 1944.

As I don't live nearby and my own home is a small top floor flat with which she is not familiar, I knew I couldn't take her there and worried that it would be deeply unsettling to take her back to her own house, which she no longer remembered, and then have to get her back to the home after the holiday. Equally, it felt awful not to have her with me for Christmas and I was having to stay in her house anyway to visit her. In the event, the decision was made for me, as her house was burgled just before Christmas and was not in a fit state for me to take her there.

The staff at the home had already advised me that it would be best to come in and spend the day with her there, and this is what I did. The meal was very nice and everything was festive in the home. However, despite the turkey lunch, decorations, carols, etc, my mum somehow remained unaware that it was Christmas at all! As others have said above, this had been the case for the last few years prior to her going into care, so to her it was no different than before. I was the one who agonised about the significance of it all.

Unfortunately, the thing that did then upset her was my giving her Christmas presents, which reminded her that she hadn't got me any; and although I had done that thing of taking one in, wrapped "from her to me", she didn't buy it and got very irate and antagonistic with me about it. So I won't pretend it will be easy, either way.

However, it was obvious to me that it would have been a mistake to take her out on that day. There are so many social expectations of Christmas, especially when we fear it may be someone's last, but in fact your mum will probably be much less aware of them than you, and if she is beginning to settle in her new routine, it's more important to support that. There's also the factor of the weather, which can be unpredictable at that time of year and any additional stress re travel arrangements will add to the tension.

My advice would be to go in and spend time with her on the day (inform the staff well in advance if possible, especially if you want to take several family members, as they may have to make special arrangements to accommodate more people for the Christmas meal); and then go home, have your own special meal, and put your feet up with a drink!

I'll be doing the same again this year. Although it is hard being on my own in her house when I'm not visiting her in the home, I've realised it's the better of the various imperfect options. And after all, it is just a day; once it's over, your mum will be none the wiser.

 

[tarababe]

I've begun to hate Christmas for the same reasons. When dad was alive my brother would alternate having them both there every other year and us the same. So they were never on their own. My dad passed away nearly four years ago and mum was diagnosed with Alzheimers at about the same time. My brother does nothing now and so mum spends every Christmas with us. The problem is she gets confused and won't stay over so living an hour away we have to pick her up then take her home again. When she is here she also forgets is Christmas day if she actually remembers it is in the first place. Plus she eats like a sparrow pushing her food round the plate and it frustrates me, but of course I have to keep this to myself.....

So we are both exhausted at the end of the day and I always drive so at least hubby can have a drink.

I don't have the option really of not bringing her as she is still in her own home But if I were you and she forgets is Christmas anyway, leave her where she is happy. That's what I would do.

 

[Redwitch]

She remembers



Went to see3 Mum at the weekend with my eldest, she spent 2 hours thinking she was with my youngest ( one blonde one almost a goth ), shame that when she is with the youngest she either doesn't talk to her or just scowls at her .

On replay " if I am still alive, can I come to the house on Christmas Day?" What should I say other than yes?"

The day itself is going to be horrible for many reasons, now I am going to be walking on eggshells. I had already invited my in-laws over for the evening (which is going to bring it's own challenges)... Oh what to do

 

[nelliewops]

DH and I are also at the stage of agonising over what to do about Christmas with both my parents having been in their dementia nursing home for only a couple of weeks so far and DH's dad also in a care home for the first time at Christmas.

DH is fortunate that he has several siblings who live much closer (same city) to his dad and they are going to take turns to have him for a few hours on both Christmas and Boxing Days. Christmas has always played a much bigger role in their family than in mine - I'm an only child who grew up with a grandma with dementia spending every Christmas with us......back then (1970/80s) people understood less about dementia and her condition was a source of many a family row at Christmas as my dad (who hated her) couldn't understand my mum's family being in denial over the whole situation

So for me Christmas memories are laced with reflections of miserable family get-togethers and whilst DH and I more than made up for this by having wonderful Christmas celebrations when DS (now just 23) was at home, this year the bad memories are flooding back at the prospect of having to make yet another *right* decision.

Every year since we were married till 2007 when we moved 150 miles away DH and I have hosted Christmas. Even after that we drove down to collect my parents and brought them back to spend a few days over Christmas with us. DS went to uni in 2007 and has spent one or two Christmases with his GF, but even when they went skiing for example they'd come to us for an early Christmas complete with turkey and presents etc. One or two years when mum had the very early stages of Alzheimer's and my dad was coping on his own he refused to come to us - he hates Christmas anyway and relished the prospect of no decorations (they haven't put any up since DS was tiny) or crackers - but out of all those years DH and I have only ever spent one Christmas Day on our own......and then I managed to have 'flu

This year DS wants (understandably) to spend Christmas with his GF in the flat they've recently bought in London and DH and I are faced with the decision of what to do regarding my parents. Last year they were still at home with a care package in place, we had been in our new house (only 70 miles from my parents) for seven months and although we were in the process of starting to gut it we cobbled together a Christmas dinner in our makeshift kitchen and managed to make the *building site* cosy and comfortable enough to keep my parents safe and warm. DS (who had driven down to Wilts from London the previous day) drove the 70 miles to collect them on Christmas morning (a three hour round trip) and DH took them back on Boxing Day afternoon complete with turkey sandwiches for tea. Christmas Day got off to a bad start when my dad - already very frail - fell up the steep Georgian stone steps and into our front door My dad had been far too pre-occupied with caring for mum to worry about purchasing presents, but even though we weren't expecting any he insisted on writing out illegible IOUs which he then hung on the Christmas tree! Mum tried to open everyone else's present under the tree before we'd got round to giving them out and my dad kept calling for his glass of red wine to be refilled - which DH and DS insisted on doing even though I'd given strict instructions not to let him get too tipsy

Despite this we were pleased we made the effort as all three of us had a feeling that it would be the last time we were together *normally* for Christmas.

So now onto this year - DH and I are totally stressed out after all that's gone over the past few months, what with his dad being sectioned then diagnosed with Vascular dementia, my dad's fall and hospitalisation, trying to find them a new home together, selling their house (exchange due for tomorrow, fingers crossed), dad now appearing to have dementia too and us having no hot water or heating for 5 months whilst building an extension in the wettest summer on record.......and now DS has announced he's going to quit his graduate law job to design furniture

Importantly though, we're not sure whether we should be driving my parents the 70 miles to our house - would it be too long a journey - and making the usual efforts to ensure they have a *good* time, or whether we drive 70 miles on Christmas morning to see them in their new home only to be faced with my dad expecting that we've come to 'take him home', only to return here too late and worn out to bother with cooking for ourselves.......or whether we let them spend Christmas in their new surroundings without us there to rock the boat and unsettle them, maybe visiting with their gifts on Christmas Eve or Boxing Day instead.......

As my dad is going through a very unsettled/confused phase, it would seem that maybe we should avoid going there on Christmas Day, but as mum always loved being with us over Christmas I feel bad at the thought of her being let down. Why does it seem so much harder when there are two ailing parent's feelings to take into consideration

 

[stressed51]

Hi awful decision as to what to do for xmas . I don't think I can have OH here for the whole of the day, will take him out from about 2pm to 6/7pm and see how it goes, very reluctant to bring him home as he is only just in the process of going from respite to permanent CH. Took him over to see my mum yesterday early evening as he wanted to go out and thought it be too upsetting for him to come home here and go back. Got very distressed and upset when I took him back again - I spent the whole night crying last night. It just seems so cruel to leave him there even tho I can't cope with him at home, CH said he was fine after I went, but didnt go to see him today as it seems to make him confused,angry, distressed and upset when I have to leave him again. This leaves me upset and feeling guilty so its a no win situation. If your loved ones are settled in their CH I would think very carefully about taking them home for the whole day, especially if they don't really have an awareness that its xmas x

 

[Witzend]

Oh, dear, nelliewops, what a headache for you. Do you think your m&d will actually be aware that it's Christmas? I found that with both FIL and my mother, although we worried like mad about what to do for the best (and brought FIL home for his first Chr. in the CH) they honestly weren't aware. And as I've said before, it was a bad mistake bringing FIL here for Christmas. (against the CH's advice)

If you think they won't really be aware then I'd do what you say, i.e. visit on Chr Eve or Boxing day, and try to have a nice, relaxed day at home.

Good luck with the completion of the house sale - hope it all goes smoothly.

 

[jon a]

Christmas - "Home or Away"

I am new here, although I have posted a threads before I don't know my way around .. but here goes..... reading members threads regarding Christmas - All I know is my Mum still (generally Knows) where Home is .. and wants to be here at home for Christmas. It would seem reading other peoples threads, that the various stages of A/D unfold over time .. most of us get to see many stages ... & manifestations of it. Truth is just when I seem to be coping and grasping with Mum's condition .. it slips gears..& freewheels to some other 'stage' - there doesn't seem to be any clear pathway.. and Mum appears to jump forwards and backwards, .. sometimes far from presenting any clear picture, at these points... everything can feel chaotic.
So Christmas yes... all those moments we want to share, but Mum's memory does not hold the recent past any more,no memory of last year... and even the distant past ... is fading. But along with other people ... Mum will be here at home with me for Christmas , despite the fact that it really does not hold 'any' meaning in any traditional sense - It is a 'period' of the year when ... the outside world seeps in and 'affects' her world... I have been my Mum's main Carer for the past 4 or 5 years .. she gradually developed Vascular Dementia, after her 1st stroke ... T.I.A.s followed, increased the damage to her brain .. which we 'eventually' were able to see quite clearly ... Once the powers that be decided it would be 'useful' to have a clear picture for diagnosis, and then finally.... treatment. I don't know how long it took .. of just ..pure struggling, to understand the various stages of physical and mental degeneration and arguing with Psychiatrists & Stroke Specialist's.. that Mum's condition was not depression, and that her behaviour was quite irrational & out of the ordinary.. I would guess it is now five years.. The affect it has had on the family Varies from person to person.. but it has greatly influenced me ... I became more and more involved, 'felt' like I was the only one who could reach my Mum and vaguely understand her needs .. when I feel she's being misunderstood I still get angry frustrated ... to the point of being 'fiercly' protective - which is not always helpful and at times I make obstacles , see problems that may not be there sometimes ... or become overcritical of Others who interact with Mum.. So yes Christmas, that time when the house is 'flooded' with advertising.. Radio jingles, and my Mum's Women Carers bring in their ideas and feelings/emotions... it's unavoidable - Yesterday I bought a small pink illuminated tree for Mum's bedroom... " but ... it's Pink.. " was the first thing Mum said .. and then, once the lights were on.. and the 3ft monster(!) was up & casting its rosy glow.. Mum's quite happy & she doesn't want it turned off!. This Saturday 'WE'.. get 14 days Respite ... Mum goes away to her C.H. and I will sleep for a week.. as I always do, recouperate & Steady myself for the next part of this long Journey, by the time Mum gets home just before Christmas ... I will miss her .. and miss her being here @ home, forget about the long sleepless nights, the Varied states.. the impossible things that I have to do be up to facing .. the monster I can be when I'm tired ? !! . So finally to wish everyone here at Talking Point .. Sufferers, Carer's Peace and Goodwill .. Jon A

 

[nelliewops]

Oh, dear, nelliewops, what a headache for you. Do you think your m&d will actually be aware that it's Christmas? I found that with both FIL and my mother, although we worried like mad about what to do for the best (and brought FIL home for his first Chr. in the CH) they honestly weren't aware. And as I've said before, it was a bad mistake bringing FIL here for Christmas. (against the CH's advice)

If you think they won't really be aware then I'd do what you say, i.e. visit on Chr Eve or Boxing day, and try to have a nice, relaxed day at home.

Good luck with the completion of the house sale - hope it all goes smoothly.

Thanks Witzend

I guess you're right - and unfortunately you have been through similar yourself - and that we should stay away on Christmas Day itself. I think last year's experience, whilst good insofar as we were all together, proves that they won't really be up to either the long journey (and twice in one day, as they couldn't be expected to stay here overnight......our old stone house is far too cold) or the excitement/rigours of the day

DH (self-confessed king of Christmas, LOL!) wants to wait till a bit nearer the time, then decide as he believes we should have them here, but if recent visits to the home are anything to go by, my parents won't realise which day is Christmas so it won't make too much difference which day they have their gifts etc.

No news yet on the house sale - just waiting for the call to say exchange has happened. It's going to be a bitter-sweet feeling though as my parents have lived their for 49 years..........

xxx