The years mum suffered from dementia can roughly be split into thirds.
The first being the coming to terms with the situation (for all parties) whilst also being able to carry on with a semblance of normality. Conversations could be had, albeit better about things from the old days. These first years when I came to visit was spent talking about her youth and how she left home at an early age (15 or so) to start earning a living and later on eventually ending up in Oslo where she one day met my father through a friend of a friend. Trade school followed, learning book-keeping skills, getting a business diploma and a job working for the feared and revered and eventually lifelong friend Eva. These were the “easy”, and often good fun, visits.
The second third was a lottery. Sometimes very clear (as long as we stayed 30-50 years behind the times conversation-wise), other times she would be very muddled, confused, upset and cross. Wheeling her round the home in her wheelchair would sometimes take the edge off if she could be distracted for a time. Other times she would be adamant that I was my dad and this was NOT a good thing. I remember one visit in particular where each day for 3 days she would constantly berate me for being “this, that and the other”. Not accepting that I was me and not “him”, I would get it in the neck for various things that had happened over the years. Not knowing whether to laugh or to cry I would just gently try and get the conversation switched something else. This was only occasionally successful! I always knew that nothing said was personal as it wasn’t aimed at me, but the situation was of course both frustrating and hurtful and sad.
The final third was mostly one of “existence”. She was still exceptionally well looked after but mostly confused and it was not really possible to hold much of a conversation going. You could say pretty much anything as her responses would have nothing to do with YOUR conversation. Towards the end I never felt strongly that my MUM was present, only my biological mum. Sometimes I would wish she’d had cancer or something that she could have fought and hopefully won and we could have kept HER. Silly way to think I guess, but dementia seems just as cruel at times. Dementia took my mum years ago, you just spend a long time saying “goodbye”, and hence the “Long Goodbye” reference is aptly used to describe the disease of Alzheimer’s dementia. I always felt bad that she had ended up in a home even if she rarely actually realised that that was where she was. Once there she flourished in her own way and for several years was in better physical health than she had been for quite a while. That’s what giving up the booze and the fags does for you! (and not overdosing on insulin when you’ve forgotten you’ve already injected yourself!)
During late autumn 2013 in her 81st year, after a short illness, she finally went to sleep and didn’t wake up again.
The long goodbye was over. Good night and sleep tight.
Next came the no funeral funeral. But that’s for another time…
“…but surely it’s time to go home now?”
The day came when mum went into the local home, first for a 2 week respite stay so my sister could go on holiday, then a couple of months later as a permanent resident. Living abroad I got off lightly, whereas my sister had to deal with all the practical issues, including the ‘deception’ of getting her there. The local home (there is only one) is run by the council and funded in a typical Scandinavian fashion. Whatever your income or level of pension, 80% goes to the council. In return you get a single (although at times a double) room with an en-suite shower room. On one level the home’s standard is basic, functional and practical. The rooms certainly are plain, but residents can bring some items of furniture if they are going to be long term residents and many also donate pieces for the common rooms, corridors and entrance areas. Situated in farming country, the links to the farming community are obvious with folk art and furniture from paintings, dressers and spinning wheels. Meticulously clean in all areas and NOTHING like senior living in some homes I have seen in the UK. In all the years of visiting, I never once smelt the more common combination of Dettol and urine and worse. All that greeted you was beaming, fabulous carers and nurses and the smell of coffee and freshly baked cakes. Mum settled in on the small dementia ward as one of a “gang of six”. One of them would never speak a word and just stare at you, or through you, another would use every opportunity to try and escape and wink at you as he tried to open a door leading out onto a small garden. (Only once was he successful as far as I know and his freedom was short lived). Mum couldn’t escape as she needed her wheeled zimmer (and later a wheelchair) and she would have had to get through a locked door and operate a lift up to the floor above. In the early days she was still able/allowed to smoke. This made for a small adventure whenever I visited. The trip to the smoking room gave her something to do and a chance to see more people than just the “gang” on her locked ward. For an agoraphobic-like person she seemed to have forgotten that she had hang-ups about being around people, smiling and greeting residents and staff as we made our way to the “nicotine suite”. Whereas she hadn’t yet forgotten that she smoked, most of the time she believed she was staying in a hotel, but would often ask why she couldn’t go home, and nearly every time I went to visit, she would ask if I’d seen her parents/my grand-parents that day. At this point they had passed away roughly 20 and 30 years ago respectively. Gently reminding her that they had died years ago, she would smile wryly and say “oh yes, of course they did, I know, I know” but the smile would falter and she would look a little sad but then light up as she lit another cigarette and then we would talk “nonsense” about something completely different until it was time to take her back downstairs to her new ward-mates. The lies when I was leaving had to continue as she was not pleased to learn that she could not come with you. “It’s very nice here and the service is excellent, but surely it’s time to go home now?”
Where is this place?
I can still feel that tight sickening feeling in my stomach back from when I first realised that my mum was not herself. After that first confusing and very repetitive conversation I spoke to my sister demanding to know if she’d experienced the same sort of “Groundhog day” with mum and if so why she hadn’t warned me. She had, but didn’t want to say anything just to see if my reaction and gut feeling was the same as hers. It was pretty clear what was going on but you don’t know for sure and I guess don’t want to know if your worst fears are real. It became clear that she was suffering from early on-set of some sort of dementia.
After several months we finally managed to persuade her to go to the doctors which she only agree to do to “shut us up”. My sister and I met with the GP, then the three of us and finally mum on her own. He agreed with us, but mum definitely did not! Thanks to my sister’s unending and unwavering support she managed to live at home for many more months until it became clear that she would have to go into a home. Often my sister would let herself in to mums house and find that she had emptied all of her cupboards and wardrobes and packed all her belongings into plastic bags and tied them all up. You could barely move across her kitchen floor for her possessions. My sister would dutiful help her to unpack and put her things back in their place, telling her that the people she was expecting to move her to her new house weren’t coming today. In a way the constant expectation that “they are coming to get me” maybe helped when she temporarily had to go into one home for a two week needs’ assessment. I remember going home to Norway for a short visit during this fortnight to save my sister going to visit her too often as it was a 130 mile round trip. I obviously wanted to see her as well, but then again I was dreading seeing her and what state she was in. She looked lost, she looked sad even though she was happy to see me. Constantly asking why she was there and what sort of place it was. “I think its a hotel, but the service is not all that great!”. In my 3 days in Norway I visited her twice. Each time, leaving was a wrench. An exercise in subterfuge and lies. When visiting hours were over you don’t lie to be mean (“just going to get something from the shop, car, etc, I’ll be back later”) but it still feels wrong. The outcome of the assessment was not a surprise, yes, she needs help and quite soon. She already had a home help who would administer her medication and insulin as she no longer could be trusted to take the right doses and at the right time. But she needed more. Now it was just a question of waiting for a bed to come available at the local old people’s home. But with only 6 beds on the sheltered/dementia ward this could take some time. However, what was clear was that soon, my promise would be broken….
So, what have you been up to? So, what have you been up to? So, what have you been up to?
Living abroad never stopped me having good and regular contact with my mum. We may not have had FaceTime or Skype video calls, but we did have the good old landline telephone. In fact I would say that we are missing out a bit today as much as it’s nice to be able to video conference Granny and Grumps “on demand” to show off little Johnny’s latest football trophy etc, but “Oh my, how you’ve grown” doesn’t quite have the same effect when its only 22 hours since you last had to sit through a re-enactment of a dance recital or “Smile and show Nanny how grateful you are for the birthday present she sent you!”. “No, she sent the wrong doll” (storms out from view of webcam etc etc). Yes, of course it’s nice to see people you don’t have daily contact with pop up on a screen every now and then but as the TV character Nan would probably say: “Well, is some peace and quiet for the old folk too much to ask for. Grand-kids popping up on my whatsitmecalledipadtabletmathingy!?!? What a f…… liberty!!” Or maybe that’s just what I think. No wonder my grand-parental name is “Grumpy”. NO such name for my mum though, nor was she anything like “Nan”. Not that she was a typical parent either. Not one for fussing and more than once did I call her at the end of my birthday to ask how did she feel this time 33 years ago etc etc. “What?” “It’s your birthday?”, “Oops, sorry!” And we’d laugh. Again. Same procedure as last year. Both as a mother and a granny she was extremely generous. But just not fussing and certainly not one for celebrating “special” days. She was Mrs Consistent alright. However, it was on a solo trip to visit her some nine or so years ago that things started to change. “Have you brought any photos of the children?” “Yes, I gave them to you 20 minutes ago, they’re in your handbag” “Oh yes, so you did! Please can you get my handbag out of the cupboard so I can have another look at them?” “Your handbag is on the chair next to you” “Oh, yes, I’m so dumb. So, what have you been up to? Have you brought any photos of the children?” “Astrid, please (I stopped calling her “mum” when I was 12) we’ve just had this conversation. What’s the matter?” “Nothing, I don’t know what you mean. Stop being silly, you mustn’t mess your mother around like this!” (laughs) “Anyway, so what have you been up to? Have you brought any photos…..”
This was the beginning of a long, slow, downward spiral….
Never make promises you can’t keep and inevitable outcomes
Often during my teenage years I would sit with my mother and ponder life, the universe and one or two other “trivial” matters. Often the conversation would turn to growing old and to the pros and cons of nursing homes and more weighty matters such as the right to die. I can’t have been much more than 14 when my mum gave me a very serious and determined look and made me promise not to ever put her in a nursing home. At 14 what do you say? You understand why someone would make such a demand and as you are the child you will inevitably one day be faced with the demise of a parent. From the day we are born we know that if nature runs its course a child will outlive its parent and will one day in effect be “orphaned”. However, at such a young age in your early teens, the incapacity or god forbid the death of a parent seems so far away. Mum would often speculate on how she could best end her life if she was faced with a terminal illness. She would try and think of ways where she could get help (from me or others) without the assister getting into trouble. Whereas she would want to end her life under certain circumstances, she would definitely not want to get a loved one into trouble. “Well”, she’d say, “if its winter I can always go to sleep outside!” With temperatures regularly plummeting below -30°C it was clear what she had in mind. Anyway, she didn’t get ill, in fact, considering her lifestyle she was always unashamedly well. Rarely even a sniffle. Not that anything as trivial as a cough or a cold on the rare occasion they did happen would make any difference. Nor having a hip replaced. “Work is the best medicine”. Idle hands and all that. Even as I got into my 20s and 30s and I’d had a day off work due to a severe cold or man flu would I ever own up to that? No way! She’d have been horrified!
— So, promises made and decades would pass until one day something happened to test my mettle…..
Up in smoke
The miracle that is you, is down to your mum. She carries you through thin, then thick, for nine and a bit months and then has to go through hard labour and literally bring you into this world. Sorry Dads, you do run a close second, but your input at this stage has so far been very brief indeed! My mum was the best mum in the world. Perfect? YES! Flawed? Sure. Low self-esteem, insecure and increasingly agoraphobic. Smoked like a chimney and drank like a fish (sometimes). I used to tease her that I never made it to 6’ tall due to her smoking. She would close her eyes, shake her head and cringe. But I can see her now. As soon as I came home in the afternoon from school, and later college, I would sit down for my main hot (re-heated) meal of the day. (The rest of the family ate theirs at lunchtime). As soon as I was tucking in she would sit down across the kitchen table with a Marlboro permanently on the go throughout the meal, catching up with my day. I guess growing up in a smoker’s home you just get used to the smell; impervious to the dangers of the air you are breathing in day after night after day. The thought of putting your own children in that kind of chemical warzone today seems impossible to most of us, but back then it was quite normal. Even more so in the 50s where in photos she looks impossibly glamorous, all dressed up for a night on the town with a cigarette held aloft. Hers was a generation where “nearly everyone” smoked and it was almost inevitable that I would also eventually take up the habit as had my sister before me. A habit that in my case would take 30 years to break….. Anyway, back to my mum. We were very close and even when I left home at 19 we would be in very regular contact. I first went to live in France for 6 months. Mum was so worried about this that after not sleeping for what must have been 4 weeks, my dad ended up driving her the 2,000 kilometres (1,250 miles) to Rheims just to make sure all was well, which of course it was. Two days later they set out on the 2,000 kilometre return journey….