1. Áine

    Áine Registered User

    It's getting towards the time when I need to get around to writing Xmas cards. I'm not a great fan of Xmas at the best of times ...... but this year it's taken on a painful sort of significance. Last year when it was so difficult to get anyone to believe that there was something not OK with dad, and he was reluctant to accept he needed any help, a social worker came out to see him about September time. The one thing he said to her that he thought he would need some help with was writing Xmas cards (it was over 3 months away for goodness sake!).

    He deteriorated so rapidly ...... and didn't get the help he needed ........ and the day I went round to help him write his Xmas cards he'd got them spread all over the floor and was paddling in them. That was a shock. The first time there was absolutely no doubt in my mind and no denying that there was something wrong. We had a nightmare trawl through his address book trying to work out who to send Xmas cards to. I'd come round to help thinking that I was just going to be helping him to chose which card to send, and addressing the envelopes because his writing wasn't great anymore. I'd come round Friday night after a long day at work thinking it would be done in half an hour or so. It turned into nightmare epic of realising he'd no idea who was still alive anymore (I wasn't very in touch with relatives in the way he was, and he'd retired from work before I left school so I'd no idea really about any of his ex work colleagues). To my horror I found he had no idea how to write his name anymore ................ or even where to try to write it ................ so several times he tried to sign the address book instead of the card.

    Three months later I'd have taken it as par for the course, but that night it was a total utter shock. He sat staring at me when I tried to get him to sign the cards. I was tired ......... it was 10pm by then and I'd left home for work about 6am. "Please dad, just write your name ........... here .............. no, ........... here" . He seemed almost in a trace, just staring at me ........... no sense of him knowing me ........... and I felt I didn't know him - never seen him like that before ......... no idea what was wrong (this is before he was diagnosed with anything) ............ no idea what to do.

    ............... then he got up, put his coat on and demanded that I take him home! (info from TP and lots of experience since have made sense of this ....... but at the time it was a bolt out the blue ........... what the hell was going on?). It was freezing cold outside, I was tired out, bothered about the cat who hadn't been given her tea and it was now 11pm. He got stroppy. My lovely gentle dad who never said boo to a goose in the 40+ years I'd known him was now reading the riot act to me. Then he got sad ........... I'm an old man ....... please take me home. It's horrid even when you know about dementia .................... but when you've no idea what's going on .................. OMG

    We had a long and confused conversation about where he thought he lived. He tried to explain that he knew he lived at X address, and knew he was there, but he needed to be taken out and brought in again, so that it was the right place. So 12 midnight ............. out into the garden, to look at the house, and back again. not enough. NHS Direct weren't brilliant at all ............. I was afraid he might have had a stroke or goodness knows what, since i knew sod all about dementia and anyway he hadn't been diagnosed with anything.

    Eventually I decided to take him a walk around his house (he'd lived there 30+ years so it shouldn't have been unfamiliar). He saw his bed and climbed into it. I stayed a while ................................. and he fell asleep.

    ................ the next day is another story .......... but I'll never write another Xmas card without thinking of that.
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    I remember posting a similar tale myself about Christmas card muddles, duplications etc. last year. This year it's simpler - but only because I'm doing it myself, with very little interest or input from Mum.

    As has been said elsewhere, this is such a bitter-sweet time of year. For those who have lost, Christmas seems to accentuate that empty chair. For those of us watching our loved ones deteriorate, we remember that in former times they were busy doing this & that, involved in entertaining & family get-togethers etc. Now those abilities have been stolen from them, so we try to make the best of what we can, but it's a hollow effort. We - the carers - are all grieving inside; we cannot know what's going on in their minds, as we see them sitting quietly (as my Mum does), perhaps looking vacantly at cards sent by friends & family.

    "Who is Juliet?"
    "She's Heather's daughter Mum" (That's her own sister's daughter)

    "Where does Heather live now?"

    "She lives on the outskirts of Bath Mum" (We visited her less than 3 months ago)

    "Have we ever been to Bath?"
    "Yes Mum, several times." (As above, plus it used to be her favourite place; even when Dad was alive - 30 yrs ago - they used to go there 3 or 4 times a year, as several of Mum's side of the family live in & around Bath)

    "Where does Bobby live now?" - her brother.

    "He lives in Derby Mum" (He has lived there for 40 years +)

    "I can't remember his wife's name. How long since we've seen them?"

    "He & John came down to see us in July Mum" (Bob's wife died about 6 years ago)


    Is it a gentle acceptance, as it may appear to be, or are they crying or screaming inside (as we do)? I fear the latter, knowing my Mum.
    For others is is worse, the Dementia sufferer may be actually shouting & screaming, unable to express what is distressing them so much.
    Or they may not be able to live in the family home any more, so their nearest & dearest worry themselves sick wondering if they are OK; is she in the best place; can the staff be relied upon to report any significant changes, and to give them a bit of love with the physical care. And of course there's our old demon the Guilt Monster, niggling away at us because our loved one is now being looked after by "strangers".

    I'm sorry this is such a down-beat response, but this is a 'down' time of year for me, I hate it. And I haven't really got a bad situation to deal with yet, my Mum is only early stage as yet. Just sorry for myself I suppose. Sorry.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I've not really thought about it before, but this is one of the advantages of growing up in a family that consisted, for most of my life, of just my mother and me. The extended family were geographical distant so Christmas was always pretty low-key. Also, my mother was a teacher, so frankly, by the time that Christmas actually rolled around, she's probably had enough what with carol singing and nativity plays. In fact, my enduring memories of Christmas tend to be making multiple sets of wings for angels! I always thought that I would like a big family Christmas, but I think I just bought into the portrayal of Christmas, rather than the actuality. At least we didn't end the day with various people not speaking to each other, as seems to be the norm in DH's family.

    I think our most memorable Christmas, was when my mother bought home a tramp for Christmas dinner and gave him a bed for the night- she'd been out walking the dogs and came across him by the side of the road. He was ex-navy, and as both she and my father had also been in the navy... Really I suppose we were fortunate that we weren't murdered in our beds, but she always had tremendous luck when it came to picking up hitchhikers. She WOULD do it, and it took me the longest time to persuade her not to.

    Excuse me while I ramble..

    Jennifer
     
  4. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Lynne
    you've got nothing to say sorry for......

    i think we all think back at this time of year.....in years gone by i put so much planning into Christmas.......getting mum and dad up to see the christmas plays at school.....busy buying presents ,wrapping and hiding them.....eagerly looking forward to the Christmas break when mum and dad could come and stay for a week so I could spoil them rotten.....Christmas Eve.....going to a carol service.... ..waiting for the kids to settle so we could play Santa....tip-toeing round...bringing all the presents downstairs while one of us was "on guard" in case the kids woke up....my dad especially loved that.....and the eating and drinking of mince pies and sherry left out for santa....he always left a few crumbs!!!!

    This is our second Christmas without Dad......it just isn't the same.......

    Mum was aware of Christmas last year.....in fact she drove me mad worrying about it all.....and I miss that this year.......This year theres nothing......she doesn't seem to know anything about it........

    She's getting a few cards through the post now.....yesterday I handed them to her(after peeking to see who they were from!!)..........she ripped them up into tiny pieces

    last year(and even up to a couple of months ago) she was constantly asking about dad.......now she doesn't mention his name.......I thought I'd be so relieved when she stopped asking about him.....but I don't......i feel as each day goes thats another piece of her life thats gone

    Its a tough time of year........
     
  5. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hiya

    It is tough, very tough............i know that i have found this last week so, so hard..........its a year this week that Ray first took ill and i can't get it out of my mind.........i know the firsts are always hard and even though my new years resolution is to 'try to be more positive about things':rolleyes: .......i've no doubt that this christmas will be a 'what if' and a 'if only' christmas rather than a merry one, but i don't want that to spoil my family's christmas...........so like many of us here, i'll paint on a smile...........and hope to get through the day!.........and once everyone is gone..............i've no doubt i'll go to pieces.

    All i can say is hang on in there Aine...........i'm not sure if this thing gets any better or not, but you've got friends here who know how your feeling.

    Love Alex x
     
  6. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    I keep humming Charlie Chaplin

    I know how you all feel. Two weeks ago, Mum was drawing up a list of people to send cards to (25 names, 18 of them the same). And yesterday she gave me 3 cards to post - she'd got 'fed up writing them all' - so I'll be sending cards on her behalf this week (and encouraging people to send cards to her to put round her little tree).

    As a longtime Christmas hater, I'm always braced this time of year. Jollity for me is something you feel because you're jolly, not because it happens to be December. (It's cold, it's wet, and I hate artificial shows of sentiment anyway!) Mum seems to remember and then forget Christmas from moment to moment - she seems more concerned at 'not letting the side down' in sending things to people (still not wanting to be seen to 'have a problem', I guess?) - along with everything else.

    I'll be spending Christmas with my partner's family, and know that it will be a nice time, for which I'm grateful (they've been so welcoming to me, it feels almost untrue - I suspect one side effect of being gay is that your concept of 'family' doesn't necessarily mean 'blood relative', it means more like 'you're a true friend, and I consider you family). All things considered, it will be ok - Mum will have as much of a Christmas as she can (with some outside help), and I will have helped her to do that (which makes me feel better). The rest will, frankly, wash past me, but then to some extent it always has.

    The fact I want to murder someone everytime I walk into a shop and get greeting with jingly carols is just one of those things I have to live with :) (If there's a new flash soon about someone going postal in Milton Keynes Shopping Centre, let it be known that I blame whoever picks the background music in Starbucks ....)
     
  7. hw00001

    hw00001 Registered User

    Oct 7, 2006
    15
    Guildford
    i know how you feel at the moment it is gettin really hard ((hug))
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I was doing OK until last night, when I had to go to the grocery store. I rarely go out at night (what I can I say - I have a teenage son who monopolises the car) and this was the first time since people had put up their outside decorations (it's a real competition over here to see how much electricty you can burn in a short time). I got a real attack of panic "OMG I haven't done anything about Christmas" and had to beat back that awful bubble you get in the pit of your stomach. I avoid the chrismas music issue by firmly listening to my ipod, but you simply can't get away from the lights.

    Jennifer
     

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