Working Girl

As many of you will be aware, I have recently started working again. This was a decision that it took me a long time to make, I was so determined to be a full time carer to nan, but it was just making me poorly. And constantly so cross. So now I am working part time and we have external carers in.

I didn’t want carers in, it may not make sense, especially as we had them in Kent. But it took so long to find the carer that we both got on with and understood what we needed that I wasn’t willing to go through all that aggro again. Plus in my eyes, we may as well have stayed in Kent if we were going to get new carers in. The reason we moved was for mum and my sister to be more involved, and granted they both see nan at least once a week now, but I think I was hoping for them to take more of the burden so we could keep it as family rather than strangers.

I agreed to meet with the social worker though, to see what we could get to help. And dammit she was lovely, and arranged for the care package to start 3 days after our meeting. Met the carers, and they were lovely too, and more than willing to help. They took on board what nan said, and I felt comfortable enough to go out at the weekend. There was a mishap with the medication, but after one phone call that was all sorted. The care company here is already way above anything that I had expected. And so I’m feeling happier about having the extra support. Which is of course what they are here for.

In other news Diana is dead (does anyone remember our little plant we distilled the water for? She didn’t make it), so we grew our own tulips instead as they are much easier to care for, and they are already sprouting. Nan feeling very proud, I just hope they get a bit more care than the cut flowers where the water went mouldy. I didn’t even know water could get mouldy.

Nan is enjoying her baths, and is more than willing for me to help out. I had the less than glamorous task of wiping nans bottom yesterday, something which didn’t phase either of us. And I think the fact that it didn’t phase us made me feel a but sadder about it, not so long ago nan would not have even put her tights on in front of me.

When my sister asked what time I would be home from work my nan replied “Oh I’m not sure, she goes all over the back and the fields…” and then proceeded to ask my sister what her plans were for Christmas (ten months to go!). I think this was my sister’s first real experience of the dementia coming forward, as nan has usually remained quite lucid around her. It seems the more comfortable nan is with someone, the more the dementia shows itself.

And then there was nan’s trip out with mum, where she told mum she wouldn’t remember her soon. Mum and I joked about this after, that we could pretend to be famous. But it hurts that nan knows where she is going. We can all laugh and joke about it now, but I don’t think we will be quite so nonchalant when it happens.

I’m not sure what’s worse, the lucidity when she knows where the dementia will take her. Or the moments where the dementia is completely enveloping her and she doesn’t know what she’s doing.

Restraining Dementia

You may have seen this article (or one in  a different newspaper) recently about how many people living with dementia in care homes are being illegally restrained. I try not to read articles too often as they upset me and I get rather cross about the lack of knowledge and understanding from the so called professionals.

The horror stories we hear really do hack me off, for many different reasons. Firstly for the scum bags who clearly went into the caring profession for the wrong reasons and become neglectful and abusive. Secondly for the lack of training given to so many carers, leaving them feeling less able to cope with the difficulties that something like dementia can bring. Thirdly for the wording used, constantly so much negativity is thrown out, it is impossible not to feel irate after reading such articles. Fourthly, because I know that there are some truly great care homes out there, with truly great carers who give a damn about each and every one the individuals they assist. And that is the point. They see the people they help as individuals, not as bed fillers, or nuisances, or illnesses, or trouble makers, or old people on their way out. Individuals, with a back story, one they may well be willing to share if you take the time to listen.

The reason people with dementia can get aggressive, or harmful to themselves or others is not because they find it amusing, or because they want to make people’s lives harder. But because they are struggling inside their mind. I keep seeing a picture on twitter, they are not being difficult, they are having a difficult time.

So many cases that this article referred to could be prevented by simply taking some time to be empathetic, finding out what is causing the difficult behaviours and trying to eliminate that. Just one afternoons training for all nursing and caring staff highlighting what dementia really is, could help them with what must be a difficult stressful job anyway. Being underequipped or misinformed won’t help anyone.

Legacy and Lessons

Getting To Know You

When Nanny Jean first started up on the internet I asked you to send us some questions that would give her a basis for a few blog posts. This was good forward thinking on my part as nan seems to be struggling a lot with the dementia, especially the memory side at the moment (but more on that in my own post later). So here are Nanny Jean’s answers to a few of your questions, we will do some more in the next post, and feel free to keep sending them. A big thank-you to you all for getting involved. (I have typed for nan as she is not so co ordinated today-I have noticed today that her speech is slowing down).

What do you hope for this year?

“I haven’t really thought about that, let’s think. I hope it’s a good year, we don’t want any problems. For myself I hope to just to be able to manage to do things and be helpful. I hope my family all keep well and have good health. I hope for the country that the floods and things don’t get any worse because that must be dreadful for the people that live out in the country where its raining and its muddy and its horrible for them. I hope my dementia doesn’t get any worse, and that somebody can do something about it at some point to help everybody that has it. I hope that the whole world stops the wars. That would be nice. And in some countries they seem to suffer the people themselves are not particularly looked after and I feel sorry for those kind of people. I would also like it to be a bit warmer, I don’t like the cold weather, although I must say I do enjoy the snow. not to go out in it but to watch it through the window.”

How would you like to be remembered?

“Well, I think that’s a hard question. I would like to think that I am liked, I try not to upset anybody. I would hope people would think of me and I hope I haven’t upset anybody because I don’t like that idea. I don’t think I have, that’s not my way of carrying on. That I was helpful and polite when I could be. I should hope that my granddaughters and daughter liked me, i know i can be a bit awkward sometimes! I was pleased that people were interested me and I hope they understood what I was trying to get at, I’m not very good at words but I hope they enjoyed my blogs. I hope people think nicely of me. I want people to remember that I live with dementia and it makes me forget things but I still try to carry on in my usual way and I tried new things like blogging. So it is never too late to start something new”.

Happiest moment of your life

When I got married 🙂

Rub A Dub Dub

Nan and I agreed this song should feature in the post, nan has been singing along. Thank God for Youtube.

hello me again, nanny jean

had a bath today and it felt very good but dont think i have not washed because iiii always  have a goodwash if i cannot get into the bath

kirsty told me it has been 20 years i cannot believe it. the demenshern seeme to have taken 20  or more years away asi cannot remember a thing about the last house i was in.ican remembe where i was achild

Nanny Jean is now eating her dinner but is finding it strange that 20 years have disappeared. She was stubbornly telling me the last time she had a bath was in a tin one in the last house. But when I asked her old she was she knew she was 80 something. We have agreed that as the dementia has taken away 20 years it is only fair that she docks 20 years off her age. So Nanny Jean is now 60! I am so relieved that nan let me help her wash her as I was becoming concerned about creases etc maybe being neglected. It was relatively simple to get her to try it out, all I had to do was show her the new equipment. Told her she could try it with her clothes on, and then we slowly took off each item of clothing. By the time the bubbles had taken over the bathroom nan was in her element.

“My bath made me feel lovely, I liked that it was nice. relax into the bath. yes”

Backwards and Forwards

So as you will all be aware nan has joined the blogging scene, and the tweeting scene. I think we can safely say she has been progressing well. And she enjoyed taking part in another diversealz chat yesterday (write up to follow). I have noticed a few things beginning to slide again this week though. It’s as if we can progress one thing, but we lose others, and it’s a shame to think of what we might have to sacrifice.

For example, today nan managed to sew on a button. I was pretty certain she wouldn’t be able to see the needle and thread, let alone be able to co ordinate the needle. But of course she proved me wrong, as she so often has a habit of doing. The button is securely back on her dress and she feels rather proud of herself. It may have taken her longer than it used to, but it is another thing she has achieved.

However, this week nan has also been poorly. I won’t go into details but it did bring to my attention more of a negligence in self care than I was aware of previously. This led to some thinking outside the box, and yet another problem temporarily solved. Sometimes I feel like we are living in a submarine, which is being poked through with holes, and we only have so much gum to block up the holes. So we are just running around plugging gaps in the hopes of not drowning.

And here’s something random to think about, if anyone has a scientific reason for this I will be grateful; Nan can find her way around the house easier in the dark, with the doors shut than if the doors are open. If a door is open then nan seems to blank it out, it’s like it doesn’t exist. So what is happening there?

And to end, a rather funny story of nan’s eagnerness to feed the cat. She was unable to locate the cat food, so she improvised. What do you think we could feed the cat? Please, take some time to think a bit creatively about this. Ok, what were you thinking? Nope, it was shortbread. Poor cat had crumbled up shortbread. Unsurprisingly he was unimpressed and stalked off.

Take A Minute

Foreword by Kirsty: For this post please keep in mind that anything in my wording is in bold. There is a bit of a backstory to this post that I thought might interest some of you. Last night nan kicked off big time, about how I “ride her” and “pick her up on every little thing”. All I did was ask if she’d brushed her teeth, and we had such a lovely day so I had no idea where this was coming from. Then it hit me, nan and I had not been able to do our walks this week due to torrential downpours and so we seem to both be suffering from cabin fever. I wanted to get nan’s opinion on this, but she had forgotten the “argument” by the time she woke up. Today I went to archery, and nan went out for a drive with her daughter. They picked us up some coffee and cake and we had a lovely afternoon. Both feeling much chirpier and prattling on to each other about nothing – the best sort of afternoon. 

This post is once again in the form of an interview, and as nan is knackered I wrote down her answers (word for word – I think it is important that if I am going to log her thoughts they should be exactly that, not my interpretation of them) to type up. I have a new found respect for *some* journalists, asking questions without giving away what you want the answer to be is surprisingly difficult.

Did you enjoy your drive today? I did enjoy my drive today, very much. What did you see? I remember seeing all the countryside, which was the nice part. Who was with you? If I could think of her name it would help. Oh God what’s the matter with me? Ridiculous. Can’t remember her name, don’t believe it. Kirsty, Kirsty. Well, I’ve got a blank at the moment. Was I there? No, I think you went somewhere else. Was (my mum) there? She took us out in the car. And erm, I can’t remember if Emily was with me.

What did you do after the drive? I think we went to some shops. We walked around but I can’t remember the name of the place. Did you bring anything home? Must have done, we did stop at some shops but I can’t remember. Did you have anything to eat or drink? I can’t remember. What about a red paper cup? That’s what we had our tea in! I didn’t have tea, I had a coffee (It was a special coffee, what was the name?) Is it a cappuccino? (YES :)!) I haven’t had many capuccinos, it was nice. I enjoyed it.

How do you feel now you’ve been out?
I enjoyed it. It was lovely. (Good, has it changed your mood?) Oh yes. Definitely. (In what way?) Well you sort of feel happy, sounds silly I know but it’s so nice to get out and be with the family. Have you not been happy? Oh yes, it’s not that I’ve been down, but when you go out like that, it’s extra special. Have you felt trapped inside with the rain? Oh yes, we couldn’t go out. It wasn’t nice at all. (How does that feeling affect your mood?) Not too bad I suppose. I vary. I like to go out even if it’s just for a walk like you take me. Just feel sort of, if you can’t get out, you feel a bit, you look forward to going out. It’s just a break.

Do you think that not getting out can cause arguments? I can imagine people would feel fed up that they can’t get out. You must get on each others nerves at some point. I don’t know, but I don’t think so. Do you feel exercise, walking, going for a drive, is beneficial to people especially those with dementia? Yes, I would say so, coz it’s nice to get out. If you just go for a walk even, it’s fresh air. A bit of exercise, you don’t want to be indoors all the time do you? (Here I tried asking nan what she think would contribute to us arguing, but she doesn’t think it’s ever happened so she can’t imagine. So I asked her if she was looking after someone, what would they need to keep them happy and stop them becoming cross and argumentative. I think her first answer sums up why Nanny Jean needs to be president of the world) Cuddles, if they don’t get cuddles they will be miserable. They need feeding. And if they want to do something you don’t want them to it will cause arguments. (My thoughts here are influence by things I’ve noticed have triggered nan’s foul moments; cold, hungry, thirsty, tired, confused – when she tries to turn the telly on for example and can’t work it out she gets frustrated with herself, but it ends up on me, feeling a loss of independence, trapped in the house – cabin fever, the dementia can cause mood swings for no apparent reason, underlying illness e.g. UTI, feeling pressurised – when people come in and ask her thousands of questions she can end up feeling grumpy).

Do you think carers and carees need time away from each other? Yes, I suppose so. Well different people have different ways so I can’t really say people should do this or do that, because everyone is different. You know what I mean? But of course they do, it’s a natural thing that people get on your nerves (Nan started laughing quite hard here, I’m starting to think I’m getting on her nerves :O)

For me a good caring relationship needs three things for both parties: sleep. Time apart. And time outside of the usual four walls (I know due to mobility this can’t always happen but I have been thinking about those beach sounds and maybe meditation, placing thoughts of an idyll to wrap nan up with on a rainy day? Any thoughts?) Of course everyone IS different, and this should be celebrated, so please let us know what YOU think a good/healthy caring relationship needs.

Lots of love from both of us, we are so grateful that people read this.

(((I’ve noticed that if nan is giving an answer where she is unsure what my thoughts are, she won’t use the “I” pronoun, it changes to “you” or “they”. ))))