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.

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”. ))))



R ‘n’ R

Sometimes tears say all there is to say
Sometimes your first scars won’t ever fade away
Tried to break my heart
Well it’s broke
Tried to hang me high
Well I’m choked
Wanted rain on me
Well I’m soaked
Soaked to the skin

Hi all, it’s only Kirsty today. Nanny Jean is missing the laptop though so I’ll be sure to get her input again very soon! Been feeling pretty run down and crappy for the last few days. I think it’s known as man flu? So spent a good few hours in bed feeling sorry for myself. Unfortunately no matter how rubbish I feel someone still has to help nan, although having the day off from cooking yesterday was very welcome.

But overall I have felt increasingly resentful, bitter and angry. And of course despite my best attempts I have taken it out on nan. Honestly she is so amazing for not only putting up with me, but also knowing that the resentment is nothing to with her. Just the situation. How she manages to still take it on the chin and not whack me round the head I do not know. Because in my opinion I have been completely and utterly foul.

And that isn’t me being hard on myself, I have been sarcastic, rude and what I would consider to be downright mean. I feel like I have belittled nan and only made myself feel worse in the process. The worst part was no matter how bitter and resentful I was acting nan was being a sweetheart and telling me I shouldn’t be doing it, I should have my own life, how grateful she is for the help. And then as soon as I felt a little bit calm and peaceful dementia nan would kick off.

Honestly, to an outsider it seems like nan is just a bit forgetful. But to us insiders it is so much more. It’s like a storm; in her head, in my head and within the atmosphere in the house. You never can tell when it will kick off, and it is unpreventable. Nan gets stroppy, mean, hurtful, sad, confused. Her mobility is suffering (or has suffered from the last house) and so she cannot wash her own feet. She forgets to brush her teeth, or change her clothes. She doesn’t know how to lock the front door. She won’t make a drink without prompting and supervision let alone take her medication. She doesn’t know what day it is, she can’t remember Headcorn (20 years of her life). She hasn’t got enough concentration to read the TV listings for 4 channels, let alone a newspaper article or a book. Her eyesight is decreasing so she can’t see dirt, dust or if things need cleaning. And I have to watch this day in day out. It’s not something I can just push to the back of my mind when I leave the house. I’m having to remember and care for nan and myself, and myself has been so neglected by me (that is terrible terrible english but please forgive it).

So there I was feeling snotty and achey just wishing for nan to go away for a few hours. But I know all these things still need doing, and that no matter what, I wouldn’t give nan up. Because ultimately I can pop a few pills, have a good cry, or have a bath, or read a book, or have a glass of wine and I can feel better.

It’s not that easy for nan.

Falling to Pieces

Nanny Jean: I am not having such a good day today so i will tell Kirsty and she will write for me.
Kirsty: Nanny Jean chose the title, as she says its her all over 😉

I get a bit frustrated to say the least that I can’t remember things as well. I do things wrong and I am sure Kirsty could say a few things about it but shes very good and never says anything. (I say I do sometimes and she says not like you could) she puts up with it very well. I didn’t feel as good as I had previously when I woke up so there is a bit of what is the matter with me when I can’t get going. And it hasn’t been a really great day today for aches and pains. I don’t know why it was worse today, I just felt it. I get up and know what I’ve got to do, wash and get dressed but it’s a gradual thing that comes on at any time, sometimes morning sometimes evening. I just cant tell. I think early in the morning is hardest when you’ve got to remember to wash and put clean things on, I find that sometimes difficult. I feel down when I am having a bad day, it’s something that just comes and eventually goes. I feel upset and why have I got it like it. It affects your thinking. What you like doing. Sometimes you want to do something and then you realise you’re not up to it, like doing things in the home. Sometimes I can get on well but today I have found it difficult to manage. I have to give up trying to do things sometimes because i tend to do it wrong or forget something, I always double check, because things worry me. Especially if I’m on my own I try not to go into the kitchen and do something. If i am having a bad I sit in my chair because I don’t feel like getting up and doing things like I usually do. If you’ve got a bad day on you seem to just sit. When i feel bad i need, mainly it’s talking, like what you do (Kirsty) to me, it shouldn’t be just you, it’d be nice if someone else relieved you, that’s what i think. It might not go down too well but oh well, its honest. I will try a day centre with Kirsty so we can make some new friends, but I am not one for mixing! I don’t mind the going out but I don’t know about the talking.

I knew it would be a bad day for us both when nan had emptied her wardrobe and got confused over which clothes were clean or not. I have been noticing this week that nan’s memory has been declining steadily, but I think it takes one event to make you realise that BOOM, things are changing again. Nan’s reality time seems to be getting shorter, and her short term memory is lasting about 10 seconds. She is really focussed on the War, and keeps talking about her shelter:

16.46, “i will start thinking about the war, we had an air raid shelter in the garden. which when you went down it was cold and damp and you used to have to take blankets with you”

16.50 “i will think about things that people might find interesting, like the wartime and going down the shelter which was damp and cold.”

I am still trying to convince nan to do things for herself, but it is hard when I remind her if she’d like a drink and by the time she has stood up she has forgotten what she was getting up to do. It’s not great to watch. On the plus side nan is now able to turn on the television with very little assistance. And my sister came over this week to take over cooking duties for an evening (something nan has probably already forgotten, as she keeps telling me I need relief) But today has left me wondering how long until I have to remind nan to go to the toilet? how long until I’m not Kirsty? how long until nan will need assistance with everything?

Dementia never lets you rest easy.