Ten a penny … Tena pants … Bittersweet Christmas

  1. Language alert on this one: my dad’s rather than mine.

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Just departing from my usual Saturday schedule to post this. There isn’t time for me to do a Saturday post so there won’t be one this week but I promise I’ll finish the where are we now post the week after. I just wanted to post about Christmas at Mum and Dad’s because it was so surreal, I am not 100% sure it happened! And I think this post should go out sooner rather than later, so here it is, on a Thursday. Oooo. Yeh, that’s me, right out there. Posting on a different day. Right then, on we go.

As you know, my dad has dementia; Alzheimer’s and Mum possibly has the same but it could just as likely be exhaustion from looking after a man who only sleeps a couple of hours a night, keeps proposing to the carers and thinks she’s his mum.

We bravely went for three nights this year, and the preceding weeks were spent liaising with the carers over who had ordered what, when and what with. Somehow we managed to order just the single turkey, yay we rock, and the one we did order was from a local farm where they are properly looked after and respected. We did think there was sausage meat to stuff it but on Christmas Eve we couldn’t find it. Meanwhile Mum discovered a box of stuff she’d bought including a box of bread sauce mix, which I’d completely forgotten, phew! Said box also contained chestnut stuffing mix, so in the absence of the sausage meat we thought we had, into the turkey it went. Woot.

Shortly after I’d stuffed the turkey with chestnut stuffing mix, McOther discovered the sausage meat for the sausage meat stuffing – too late for me to have to make it, which, while a little sad, was also good in that it saved me a job at a point when I didn’t really have time to do it. Instead we cut it into ice hockey puck shaped things and cooked them with the bird.

One minging balloon. You can just see the green shred of the other one in one photo.

Christmas Eve we had to wrap the stocking. Obviously, we’d seen that coming and wrapped everything we could on the day of purchase! I had found some completely vile balloons in Wilco which were hilarious but took a fearsome amount of courage to blow up. One ended up deformed, only one ear inflated fully and I couldn’t get the other one to fill. Unfortunately, before I got to take a picture it burst! Boo! The other one popped after getting too close to the tree, but I have a picture of the purple one – the only survivor of the three.

During our first night, I woke up several times to the sound of my dad bellowing orders:

‘I’m NOT wearing these.’ … ‘No.’ … ‘No you bloody stupid woman! I REFUSE to wear them!’ … ‘You’re a thoroughly unkind woman! You’re horrible! Not like … she’s a NICE person.’ Dad is incontinent and was talking about removing his tena pants. He does this every night and he also does a lot of pooh every night which makes a delightful surprise for the carer in the morning – except it’s not so much of a surprise these days.

Other gems included: ‘Will someone come and turn the fucking telly on!’ at about three a.m. and then,

‘Will someone PLEASE come and bloody well get me dressed.’ (at about four a.m.)

Meanwhile during the day, ‘Will someone turn the fucking telly off.’ and ten minutes later, ‘Will someone turn the fucking telly on.’

It’s like Father Jack combined with Granddad out of Bread. This is the reality of living with dementia. I read that the best thing to do with dementia folks is to go with the flow. A while ago he told me that he had to go for a walk NOW. I looked outside and saw that it was blowing a hooley and chucking it down with rain but I knew he’d get in a state if I told him, ‘no’ and I thought I’d give the go with the flow thing a try. So just said,

‘OK Dad, come on then.’ By the time he’d got into the hall I said, ‘Hmm, I am daft! I can’t remember what we were going to do next.’
‘I don’t know,’ he said, I’ve forgotten, too.’ so I said,
‘Maybe we came out here so you could have a wee.’
He brightened up,
‘Yes, that’s right. What am I coming to that I can’t remember?’
I said, ‘I dunno,’ and we had a bit of a chuckle about and I added, ‘I’ll just go and get your bottle.’
Wee sorted, back he went to his chair. No more chuntering about going outside.

The trouble is, that’s fine during the day. Sure, maybe overnight the carer could agree that he could get up, suggest he goes to the bathroom to dress, then by the time he’s got there he may have forgotten and then they can just so the wee thing and take him back to bed. He might remember he was getting up and call their bluff though. Some ideas are more fixed than others. That’s fine in a home, with night staff, they could just get him up and he would probably sleep quietly the rest of the night in front of the telly. But that’s not so easy at home when the same people have to be up and awake with him during the day who were up and awake with him all night. I guess this is the point in the Contented Dementia Sufferer where they recommend the person with dementia goes into a home. But Mum has promised Dad he can stay in his own home and feels that she must honour that promise, whatever happens.

But I wonder what Dad would say, real Dad, before the dementia came Dad, if he could see her now? He would be horrified to see Mum going through this. He would be saying, ‘No darling, you simply can’t be expected to do this, you have to put me in a home.’

He has reached the shouty angry stage of Alzheimer’s and remained shouty and angry from our arrival through to the morning of Boxing Day. And there’s the whole thing that this shouty Father Jack clone who lives with Mum is a million miles from the person he was. He’s in there, but it’s really hard to solve the human puzzle that is demented Dad and find him. It doesn’t mean we should give up, but I wonder if we should take a different view. The trouble is, Mum has to do what she feels is right, but I’m hoping to persuade her to balance that. She can’t keep caring for Dad as if he has been given seven months to live. She’s been doing that for fourteen years. She needs to accept he will be around, let go of the fear and step away every now and again to recharge her own batteries. But persuading her is easier said than done.

As I may have mentioned, Dad was in a bit of a grump when we arrived. He is usually an unhappy chappie in the mornings but once he gets downstairs and has some food he perks up. However, I missed a trick on Christmas day. The food was too complicated, the plate too full. He needed the turkey cut up, he needed a tiny portions of each thing with plenty of white space in between. He didn’t eat. He was overwhelmed and asked to go back to his chair. I let him. He had ice cream for pudding but ate very little else. Another situation when he’s not a happy man; when he’s hungry.

He was too grumpy to come to the Christmas Day service, but that was a good thing, as he was in the kind of mood when he’d be singing Old King Cole or obscene limericks very loudly and shouting that he needed, ‘a fucking piss’ instead of the carols or something.

He has rather lost the idea of time if he says,

‘May I have a cup of coffee?’ and it doesn’t materialise by his side as he is finishing the sentence he will fly into a rage. ‘Hurry up you stupid bloody woman! I want my coffee!’ It took me a while to get the hang of laughing him out of it. It’s one of the reasons I really dread having to help him wee. Because he has a tendency to start berating you if his pants aren’t pulled up the second he’s finished. The first time he did it to me I wasn’t prepared for it at all and I got it so wrong he smacked me over the head.

On Christmas morning he asked me who I was so I explained I was his daughter.

‘Oh yes, I remember. What a pity you’ve got so ugly.’
‘Thanks Dad.’

Everyone in Dad world needs a haircut. ‘You need a haircut!’ is one of the main things he says to everyone, women and men, on a loop. He appears to want us to all have Lego mini figure hair, smooth and unruffled. Three brillo heads staying must have been a joy for him!

He’s deteriorated fast this year and even in the ten days since I’d last seen him. Dad and I have a joke about the German word for father which sounds very like ‘farter’. So I’d shout, ‘mine farter oh mine farter!’ and he’d say, ‘mine taughter, mine taughter,’ no idea how to spell these words, I’m doing it phonetically. We’ve been doing this joke since I was about fourteen and as he has become more and more demented it’s become our anchor, setting the tone, setting the scene, placing me. Do the joke and at once he knows who I am.

When things started getting a bit dicey on Christmas day I gave it a go.

‘It’s not father, it’s vater, with a v you stupid woman. Get it right for god’s sake!’

So he’s forgotten that one then.

Ho hum.

So how did it go?

It was bittersweet.

Upside: McMini – McMini all round actually because was fab and Dad didn’t swear at him once. He also got to light the Christmas Day candle on the Advent wreath. I didn’t have to change Dad’s nappy. I got to prepare a turkey dinner for only the third time in our 22 year marriage (which was awesome) – and I also got to help McOther cook it.

Downside: Dad didn’t really cheer up until the last day we were there so it was hard work and I felt I’d missed him for three days of the four.

Special commendation: to McOther who had to deal with Dad plus full tena pants after the carer had left for her day off on Christmas Day and McMini, Mum and I had gone to church.

Did we have a good time? In parts, which leads me to something important.

Important Thing.

Not everyone enjoys Christmas. Not everyone has a laugh. There are more deaths at Christmas than any other time, which, presumably, means there are more people grieving. More suicides, too. There are more folks who are sad or upset than you could ever know. There is so much pressure on us to have a fun, be joyful and happy. Everyone is going on about how wonderful it is everywhere you look, with their elves on their shelves, their acrylic festive jumpers, their relentless happiness and hall decking and Christmas cheer.

Bastards.

Fact is, for some folks, Christmas is sad, or difficult, or painful. And you know what. If you’re one of them, it’s OK.

Lost a loved one? Looking after someone critically ill? Looking after someone with dementia? Dealing with depression? Dealing with chronic pain? Full time carer? Eating disorder? You are not alone. Here are some I know, a lady lost her son three weeks before Christmas, another lost her husband six weeks before and another lost her husband the week before. Another lady spent Christmas Day in A&E with her husband and lost two sisters over the last two weeks. Two lovely ladies I knew died of cancer just after Christmas, both leaving loving husbands and children. My Grandfather’s mother had a heart attack and died in his arms on the way home from church on Christmas morning. In the news tonight, a lady in her sixties and a policeman died in a car accident on Christmas Day.

You are in good company.

Shit happens, and in that way, Christmas is like any other day. I hope with all my heart that you did enjoy Christmas; that it was wonderful, warm and loving and that it brought you everything you wanted. But it’s not obligatory if you couldn’t manage to enjoy it this year. Sometimes life is hard and sometimes doing the right thing isn’t always the easy thing. Sometimes, you just have to grit your teeth and do what has to be done, or do your utmost to make it as happy for the people you love as you are able.

Sometimes, even when it’s overflowing with love and warmth and compassion and kindness, Christmas still hurts.

It’s worth trying to look for the shiny bits. If they aren’t there you can always have a go at making some even if it’s just finding someone who is having it harder than you and giving them a hug. They’re there, believe me. But if you can’t find anyone obvious, take heart from that list there. It isn’t just you.

That’s the thing, I guess. It isn’t always easy or enjoyable. You don’t have to pretend it is. You don’t have to pretend it’s OK. Finding it difficult is far from failure. Lots of people struggle at Christmas, so if that’s you, here’s hoping it gives you the strength you need to know you are in good company.

God bless, hang in there and good luck.

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And just in case a word from the Samaritans. As soon as I have the time to do it I am going to become one.

Whatever you’re going through, call us free any time, from any phone on 116 123. We’re here round the clock, 24 hours a day, 365 days a year. If you need a response immediately, it’s best to call us on the phone. This number is FREE to call. You don’t have to be suicidal to call us.

There you have it peps:

Samaritans UK and Ireland 116 123
Samaritans Astralia 135 247
Samaritans New Zealand 0800 726 666
Samaritans RSA 0800 12 13 14/0800 21 22 23
Samaritans USA 1 (800) 273-TALK.
List of suicide and depression crisis lines round the world – careful of this one, the first on each listing is the emergency services number but if anyone outside those other areas needs one I hope this link will help: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines

 

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14 Comments

Filed under General Wittering

14 responses to “Ten a penny … Tena pants … Bittersweet Christmas

  1. We’re looking as a couple to move into a retirement community where both of us can live, and whichever needs care will move to the move advanced levels in the same place. This makes it possible for the healthier one of the pair to spend a lot of time with the other, but also have a life. I think it’s noble of your mom to want to keep your dad at home, but I’m not depending on my husband for that – he’s willing, but not very good at thinking ahead. It would drive both of us nuts to take care of each other.

    • Good move inn your part externally sensible. Mum and dad do have live in carers but only since 2016. Mum had to wear herself down to the point where she put herself in hospital before she would agree to it.

      The issue note is that she shares a bedroom with a guy who sleeps two hours, tops, a night and then sleeps all day. But who is so exhausting, awake – constantly needs attention, can’t be left alone and yells for someone to come and talk to him when he is – that we all let him sleep. She needs to be out of his room and he needs spend away inn respite care really.

      • You and any siblings have to take over the decisions. Your mum is too tired to make good ones. People don’t always know the right thing to do, but this sounds untenable. It’s probably like the frog put into cold water who can’t realize the water has been heating slowly! I hate to say it, but your mom has to be your first priority. Most people don’t refer to Christmas at their parents’ as surreal.

        The worst part? It’s probably not the best for your dad either.

        I’m so sorry. I don’t know what your options are, but you guys sound WAY too stressed. And the statistics aren’t good – for the CARERS, which includes you and your mom, not just the paid ones.

        I think some well set up dementia units are designed to allow people to wander, be up all night, and have fresh staff in the night. It’s no longer a slightly off-kilter normal situation.

        Please take care of your mom.

      • It’s getting the balance between what’s right for mums health and what she can do and still live with herself as a person. The frog I got water is a very good analogy. I will use that to her. She is still well enough to make her own decisions and for her happiness we can’t override her so we are working hard to brig her round. Making her even more unhappy – even if its for her own good – won’t help.

      • That’s so tough. I sympathize – I really do.

      • Also though mum and dad planned while he was more with it, so much has changed our come out of left field.

      • I can’t plan a single day and have it come out, so I can imagine. I’m just scared, having been disabled so long, and knowing how much basic help I need right now.

        We’re finding out what I predicted is true: husband had an eye operation he was supposed to be recovered from in a few days. Well, after the eye surgeon removed the flap over the macula, he went around the edge of the retina, and found it was starting to detach. So the surgery had an extra, it took FAR longer, and the recovery has made my husband, who takes care of things like grocery shopping (I rarely leave the house) into someone who is supposed to be spending all his time on his left side with the little gas bubble the surgeon inserted into his eye pressing on the retinal repair! For possibly weeks. I’m exhausted (the surgery was far away, and the post-op visit had to be with the surgeon – in another STATE, the very next day) – and he’s uncomfortable and grumpy. And we’re only a couple of days in.

        We’ll be fine – but he can’t get on an airplane to go to California (and drive there) for us to see the places we’re considering…

        It all balloons.

        Every single thing has a hundred side-things, none of them capable of being put off until ‘convenient.’

        You will make the right choice as soon as you possibly can – to a very emotional and tricky AND difficult problem.

      • I think you can try places out as respite care – and maybe not take the person back home if it works out.

      • This is my cunning plan. 😉

      • Please excuse my commenting on your situation; we have lost two grandmas and one grandfather since 2014. The grandmas had dementia (but neither could get around on her own). My dad was coherent. My FIL is 97, and is now having someone come in 6 hours a day because he didin’t move to a place early enough. I speak from observation.

      • Not at all. Dad can’t get about on his own either, that’s the trouble so he shouts for someone to come and get him.

      • I’m having trouble with much walking – I fear the moment when I can’t get around, can’t dress myself, can’t go to the you-know-where…

        But we CFS people heal very slowly, and I can’t do the back surgery they say might help (but won’t promise anything?). Life comes along.

        And we writers drag ourselves back to the keyboard as soon as we can, because we’re happy there. Maybe it’s because we have total control, whether we can sell the results or not!

  2. Diana

    I am so glad that you were able to spend time with your parents, although I am really sorry that your dad was not himself for most of the visit. I suspect that the dementia is pretty scary, and that trying to maintain some sort of control is the only thing he can do. Your response to his desire to go outside was brilliant! My one act of brilliance with my mom was to ask a granddaughter to take her into the other room and read with her, when I sensed that Mom was getting totally overwhelmed and was ready to shut down. That was nowhere near as stunning as your victory — although I was really happy that Mom had her moments of anxiety overtaken by moments of joy.

    My dad died a few days before Christmas, 10 years ago now. Someone else I knew lost her dad 4 days later. I don’t know what the stats are, but I am pretty sure that having the grief of the loss tied intricately with the holiday is much harder than having the grief tied to some random day. If all those people you listed died this year, I am stunned and so sorry for your losses (and theirs). That is hard! One loss is tough; dealing with multiples one after another is unimaginable to me.

    Dad wanted desperately to go home — and most of us siblings just said “no!” because it would have put too much strain on Mom. One sister still is angry that we didn’t try — and I sometimes wished we’d tried to work it out. We had no idea that he would die in the hospital though. That was hard. My parents’ best friends are in their 90’s now — and the wife had to be put into a home, because the husband simply could not handle her needs any more. She loves the new place. Partly because she’s very sociable, and can make friends with anyone — and does. The husband has now moved into the same care home as she’s in. He has his own room, and no requirement to care for her, and he also loves it. He gets to enjoy her company (even though her dementia means she doesn’t always recognize him), and they still share a deep love for each other. But he has no burden of care. This has been life changing for him. He hated being separated, and the guilt he felt at letting her go was huge.

    The down side is that there is NO guarantee that the two will be allowed to continue living in the same care home if needs change. That is one really horrible thing about our health care system here. A couple in their 90’s was separated just before Christmas, because the needs of the husband were greater than the home could accommodate. They now live miles from each other and will not be able to visit each other easily, if at all. The couple and their family members are devastated. It also adds to the burden of the family since they now have to accommodate visits to two separate locations.

    I was going to say that perhaps your mom and dad would thrive under similar accommodations as my parents’ friends. But once I remembered the possible shortcomings of this potentiality, I take that back. I hope your mom is freed from her promise — made to a healthy husband — and that a good solution is found that will satisfy the needs and desires of both. And that will give you a bit of break, too.

    God bless, hang in there, and good luck, to you all too!

    • Bless you, Thank you for your kind words. Doubtless we will sort something out. I will ring the doctor in the new year. The deaths aren’t all one Christmas but barring the death of my great grandmother they are all since 2012. Then there are all the folks who lost young children. If doesn’t matter what time of year they die you are always going to feel that over Christmas.

      Cheers

      MTM

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