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Distracting Nan really helped

You learn very quickly when caring for someone with Alzheimers that a positive distraction is key to changing their behaviour especially when they may be worked up by something. This was certainly true for Nan and defused a lot of tense situations immediately. When looking through old photos yesterday I was reminded of a particular time.

Easter Sunday 2018 my uncle was still living with my Nan and he called me up early in the morning because Nan was stressing out over something. I can’t remember what it was but I know that when I got to her house she was not a happy bunny!

I remember getting in my car with her Easter present, a cuddly bunny rabbit hoping that it would cheer her up. I would have got her some cchocolate but back then she was still deciding that chocolate was the worst thing on earth. Ironic for a woman that used to eat 5 large bars in the space of a couple of days and get me to get more on the shopping! Anyhow, I took the cuddly rabbit and within minutes she appeared to forget what had been causing her bad mood. I think the reason that I can’t remember is because the atmosphere in the house changed very quickly to a positive fun and happy one.

Nan sat there for ages talking to this bunny rabbit. It was lovely to see. As you can see from the picture she was in a very good mood. I just sat there and watched. We definitely named him, though I can’t remember what it was. By the time Nan died she has numerous cuddly toys that would get renamed daily so I had a lot of names to remember especially when the next day they could now be named something they were last week and she looks at you funny for calling it by the wrong name.

You learn very quickly to roll with it and if she told me I was wrong, then I was wrong. I was very likely right but if it wasn’t going to harm her in anyway then I was very happy to be wrong. This goes for everything, from locking doors and windows, to making food and naming cuddly toys. Nans health and happiness was top priority and the only time I would put my foot down was in order to maintain her safety. Otherwise she had free rein to do what she wanted when she wanted which even included eating 5 pieces of cake as the dentist arrived at her house! Que a mortified Rebecca!

I really miss Nan and I am missing the fact we no longer have the chance to make more memories like this. I have been watching all the videos that I have taken and plan to put them together into a video showing the fun we had and pop it up on the blog sometime soon.

To all my friends that read this, I know you enjoyed seeing all the memories I made with Nan over the years. I hope you are enjoying hearing my stories. To anyone else, my Nan really did bring me lots of joy in the last years of her life and I hope you enjoy learning about her too.

Until next time.

Grief and its impact on my health

Previously I have blogged about my health having Fibromyalgia, Joint hyper-mobility syndrome and anxiety. I stopped that and recently I have only been talking about Nan and how I am feeling, which undoubtedly this will still be about as it hasn’t even been four weeks yet. Grief has an impact on people physically, it really has done me and in this post I am going to talk about some of the experiences I have been having. As I have been reminded there are no right or wrong ways to grieve and I do need to be kinder to myself but here is how i have been affected.

Sleep

As anyone with Fibromyalgia knows sleep is always an issue. Its rarely refreshing and I find I can wake feeling more tired on occasion. Prior to Nans death I was getting about 6 to 7 hours a night and waking up between 7 and 8 in the morning every morning without fail. Since Nans death my sleep has been all over the place. I can’t remember the last time I was asleep before midnight and I even found myself up until 2/3 in the morning some times. I even contacted the doctor and got something to help me relax but that didn’t really help because it made me feel worse the next day. I am trying to get up earlier every morning in the hope that eventually my body goes back into a better routine but it is quite hard going.

Food

I am trying hard to lose weight. I struggle, hormones are an absolute bitch. Since Nan died I have actually lost about 5kgs. I think part of that was at the beginning I was struggling to eat and partly because I always lose a bit during the summer because I just lose my appetite. I have been a bit hit and miss in the last few weeks. Some really healthy days, some more snacky days. I always have a conflicted relationship with food anyhow, one day I can eat well next day its hard for me to stomach anything. I think I will eventually fall back into a better routine. Last year I had been seeing a health trainer to help me establish better routines and one of my goals was to always eat breakfast, something I am hit and miss with at the moment but want to get back to being better at.

Mental health

I have suffered with mental health issues for years. I take citalopram and next week I will have done for 5 years. Its not something that I am ashamed of, I remember when I got put on them a friend of mine remarked that it isn’t something that I would want to be on long term. That has something that has always stuck in my head and as each year has ticked by I have thought oh look, still on them, still rocking this up and down rollercoaster.

Prior to Nan passing away I was concerned what impact her death would have on my mental health. I know that I had put a lot of my energy into looking after her. There were times that she was the only reason I got out of bed. I did worry, would I want to get out of bed, carry on, what would I do? Being made redundant from my job a few months ago and struggling to find a new job means that I literally have nothing to do now. Boris hasn’t even given me back my gym yet! The pandemic means I am staying home with far too much time to think and this is having a negative impact on my mental health. I am not going to pretend that life is all top notch because it really isn’t. I am lucky to have some friends that I can turn too, rant, scream… or just be really stupid to take my mind off things.

The future……

The future for me feels a bit uncertain, I don’t know where my future job is going to be. I look everyday for jobs. I don’t know when I am going back to the gym. I am uncertain about everything, grief is a little bit of a mind field. We laid Nan to rest at grampys grave yesterday, I guess its both of their graves now but last night I felt some peace at knowing she was in her final resting place and I took a little bit of comfort from that last night. I hope this is a sign that things might take a step in the right direction but I am fully expecting more loop to loops on this funny odd roller coaster before I find out what life is really going to be like now I am not caring for Nan or have her in my life.

It wasn’t always the plan

The day Nan came out of Hospital in 2016

When Nan went into hospital in August 2016 and was diagnosed with dementia it was never the plan for me to take on such a massive role in caring for her (along with other members of the family). When she was originally discharged from hospital it was with the intention of having carers from the beginning. She was discharged from hospital with a live in carer for a couple of weeks and they had planned to get her down to 4 time a day care after that. However, Nan did so well and needed so little care that we were essentially abandoned.

Abandoned….

Maybe abandoned sounds a bit extreme, however it is how it felt at the time. We had gone from expecting lots of help to having literally none. Nan couldn’t be left in charge of her own medication so it went from thinking that carers would be coming in, to them saying no carers and medication doesn’t count as a care need so we knew that from that moment we would be having to see Nan daily.

Falling into place

Quite quickly we fell into a good routine. We would do a food shop for Nan every monday. At this point in time she could still cook her own dinners (which would be a ready meal) and could do her own food so this wasn’t a concern. She also could manage her personal hygiene needs and still knew how to make a phone call if she was stuck. So we used to go up daily and we would leave her with one days medication. She got used to this, she did occasionally ask her why she wasn’t allowed to have it all but I used to say things like it means that I can come see you everyday etc and it soon sweetened the situation.

We plodded on

For a couple of years this worked out really well. Things did get harder and Nan had more needs. It became harder to cope, my Uncle lived with Nan and between us we still managed to plod on. This, even though things got messy, we got behind on washing and a “friend” of Nans decided to judge us on this, Nan remained happy and as healthy as we could keep her and that was the main thing.

I had never planned to be Nans carer but it is something I am so glad that I did. It is incredibly hard, draining, emotional and can be frustrating but its so rewarding and even after she has left us I still feel like i reap the benefits of the rewards. I know that I did the best to care for her. Getting carers was never a plan of ours and I didn’t like it and maybe in the future depending on what happens (that sounds ominous!!) I might open up more about why we didn’t like having carers!

Until then

I hope everyone is well. I have been quiet this month. Its been a difficult month, I have struggled with Nan not being here. I am incredibly bored in this difficult situation we are all living within. I think I would be better if I had a job to go to because I spend too much of my day thinking which is dangerous! Still, we must plod on. Things will get better, just thank you to everyone that messages me still to check I am ok! It means alot 🙂

Becka.

I really miss you

Before I know it two months will have passed since Nan left me (us all). Those two months have really flown by. In a few weeks she is being put in her final resting place which is with my grampy and I think I might feel at peace a bit when she is with him. Yes he has been gone since 1997 but hes my hero and my screensaver on my phone and when shes with him it will feel right! 🙂

Today I have felt really down in the dumps. Its the first time in a few weeks that I have sat down and felt like nothing was worthwhile. I really miss Nan, I am not going to try and beat around the bush there, I miss her alot. Grief is a bloody bitch, its so weird. Some days I can be perfectly ok, like yes I miss her but I function and feel ok as it is what it is. She isn’t suffering anymore and that is good. But today I just wanted her back with me. I wanted one more hug and kiss. I even wanted to be told I am fat again or that her trousers are smaller than mine. I’d take it all again and then a hundred times over to have her back. I can’t remember the last time I had a cry over it, though I am tearing up as I write this.

I miss this smile. I can’t get my head round the fact she is actually gone. It doesn’t feel right. I had prepared myself for a while that she would go in the near future, her dementia progressed and dementia is a bitch. I just really hate life without her. In a world where I felt so miserable, where my mental health took a battering, where I have no confidence and felt like it was all pointless Nan always managed to drag me back even when she was telling me I am fat and I should get a proper job and move out. Cheers babe.

I will be fine, I know I will but I just want my Nan back and I can’t and thats just shit.

Grief really sucks.
No matter how many times you go through it, it is never the same. You never know how you are going to react. There is no manual telling you the right or wrong way to grief, though I wish there was.

Well, its 1:15am as I write this and I probably should go to bed. I don’t have a reason to set an alarm, I won’t wake up to a missed call from a carer. Nor will I wake up to find Nan went a wandering in the night and her door sensors went off. I am crap with change and a massive change like this is just frying my brain. I don’t think the current pandemic we are in is helping! I am stuck thinking more than I wish too! I miss my gym visits!

Until next time.

The phone won’t ring now.

For quite a while there had always been that thought in the back of my head when I went to bed that I’d wake up and there would be that phone call… you know the phone call no-one wants to say that Nan had gone. The thoughts became more when Nan came out of hospital last year and had door sensors installed… not only did I think I would wake up to that call but I also felt I was always on edge;

Would Nan go wandering in the night?
Would Nan have a fall?
Is Nan ok at home alone?

I probably didn’t have a fully rested sleep (and still haven’t) for nearly a year. I was always ready to get up at any hour and go and see Nan. I had totally got used to this though luckily never had to get up in the middle of the night because Nan wasn’t a danger in her own home despite what THAT social worker I had previously talked about tried to get us to believe she was.

In the weeks leading up to Nan passing away I also had the carers ringing regularly, sometimes multiple times a day so it really did feel like my phone needed to be surgically attached to my hand “just in case”.

This is why I just can’t seem to get used to the fact the phone won’t ring now. It has been easier to get used to the not going to her house daily and seeing her than it has been the fact my phone won’t ring and I don’t need to be ready to jump in the car at a moments notice. The day she died my day started with a phone call from a carer, thankfully a phone call I am so grateful for as it meant I could be with her at the end. Lets be honest, some of the phone calls I really could have done without.

I find myself regularly thinking things like;

Is the phone going to ring?
Is she ok?
Is my phone on loud just in case?
What if……….

The what if one is the one that stumps me the most because its the one that comes from my anxiety. All the others are just me forgetting shes not here anymore and I quickly forget that I have thought them, it being more of a of course its not going to ring and no put your phone back on silent so no-one in the world needs to bother you kind of thoughts.

The what if it where I think things like what if that happens and what if this happens. I had thought up hundreds of different scenarios in my head and no usually by choice and I can’t get used to not having to think these things. Like i previously said one thing I always used to worry was about getting a phone call to say she had passed away. I dreaded that call and thankfully (I suppose) I never had to experience that.

I don’t know when these what if thoughts will stop. I don’t know if I want them too, not at the moment because the moment they stop then to me thats it. I will almost be allowed to relax and this is something that feels unusual to me.

I know that I will get used to it eventually, I can cope day to day… I am doing ok. I miss Nan so much and I know thats ok too because its coming up to 6 weeks it’s not been long and on the whole I think I am doing a good job at trying to stay busy even though I am extremely bored!

At least now if the phone does ring I can ignore it if I dont recognise the number just incase its someone asking me if I was in an accident that wasn’t my fault!!!

Love you, Love you, Love you

Nan always used to say goodbye to me (and a few others) by saying “Love you, Love you, Love you”. I loved hearing that so much. She said it once whilst she was in hospital in March and this made mum and I so happy.

It all started when I used to ring her twice a day. I saw her too, but I couldn’t stop myself from ringing in the morning and at 6pm. When I was doing my masters I commuted by train and I would get off the train just after 8am and spend my walk from the station to university on the phone to her. A lot of this time I would spend listening to her talking about how she was waving to the school kids. I remember this one occasion she actually said to me to wait whilst she put the phone on her trolley, walked to the window… waved to the kids… left me 10 minutes there about and then came back to me. I listened the whole time you could always hear Nan pottering about. I really would give just about anything right now to have those times back. Just to hear her say “Love you, Love you, Love you” down the end of the phone to me again. She can even hang up the phone on me as she did on occasion if she wanted to!

6pm became our phone call time. My Uncle told me she used to sit with her finger on the phone button from about 10 to 6 looking at the clock. Thinking about that as I write this, I must confess my eyes aren’t dry. I’d have to ring even if I had seen her just an hour previous or I was the evil one! We’d have nothing to talk about but I loved to ring her all the same. I knew it made her happy.

6pm phone calls ended over a year ago. I always missed them though. I knew that her dementia had progressed and that answering the phone was something she couldn’t do anymore but I would have given anything to let her be able to pick up the phone one more time. She used to try and answer the phone before I had even rang which meant many times I got the busy tone a number of times until she cut it off and I could get through. I would have had the busy tone 20 times till I got worried and drove up there if it just meant she could tell me “Love you , Love you, Love you ” at the end of the phone call again.

Today marks 1 month since Nan passed. I can’t believe how fast that month has gone. I never thought I would be able to function as well as I have done in the last month.

I love you, love you, love you Nan.
x

1 year ago – 3rd May 2019

For the last year I have referred to the 3rd May as our last normal day, the last day it was mainly me and Nan. The last time before a huge chunk of the responsibility was taken from my shoulders and it makes me sad because it was such a happy moment in which this photo was taken for life to change so much just a few hours later.

Nan went for her first (and only) ever walk alone outside that evening, she only went as far as her neighbours but the fact she went outside was enough to scare me half to death. I thought thats it, this is the start… shes going to be going out all the time now and I won’t know what to do or how to cope. I didn’t think I would cope. I sat with Nan for a period of time before I called 111 for advice. It was just advice, the nurse on the end of the phone was lovely and she suggested that a paramedic come out and assess Nan to check that she didn’t have any underlying infection that caused her to behave differently.

The nicest man turned up and he assessed both Nan but also myself because of the strain everything and the affect on my mental health. He was a really nice man, he prescribed me a good course of rest and to contact reach out to my doctor which I did. Nan went into hospital, partly to get checked out, partly on a social admission for her safety. I arrived at Nans at 9pm and it was 3am on the 4th may when she got taken to hospital. It was a very long evening and very tiring but I knew that Nan was safe. I was worried sick, but Nan was safe.

Nan was in hospital for a month, coming out on June 3rd 2019 and it was the hardest month ever! Worry after worry!! This post explains more about the worry that was had and whilst it stressed me out so much >>> https://beckalou.co.uk/2020/04/16/dear-social-worker/ <<<<

When Nan came out of hospital she had a care package put in place starting with a live in carer and moving to 4 times a day care. This was a big adjustment period for both Nan and I. I did feel some guilt, which was probably irrational but I promised to always look after her. I promised her it would always be me and her until the end and I was never going to leave her (how true this turned out) She was disappointed for quite a while saying that I had left her alone and this made me feel even worse even though I was still visiting her everyday without fail. To her because these strangers were making her food, washing her, changing her, all the things she saw me do I was no longer doing anything and I had abandoned her. She was so upset with me for quite a while.

Eventually we got used to the carers and it meant that we got to spend lots of time together as just grandmother/ granddaughter and those were really nice months. It was precious time where we could just sit together and laugh, or sit together in silence and it was ok. The last month of her life was slightly different I did feel quite a lot of pressure again. This was because when she came out of hospital middle of march this year she had new health needs and they were difficult ,hard and we all struggled.

I miss her so much, it is only been 3 weeks. I do take some comfort in the fact I got to hold her hand at the end. I take some comfort in the fact she slipped away peacefully because the last month of her life hadn’t been the quality of life that she deserved. I miss my nan so much, I love my nan so much but I take comfort in all our memories including the struggles.

Grief started before the loss

The day Nan died I took down all the photos I have of me and her in my room. I figured I would find photos too painful to look at and it would be best to just take them away so I wasn’t constantly reminded. To start with this really helped but since I first went into Nans house I have felt that looking at photos and videos is actually a massive comfort. There is just one point about it, I can only look at the photos and videos from a couple of years ago, anything more recent not so much. It hit me, I had grieved for the Nan a few years ago already.

Even Nan with dementia was completely different to the Nan that I sat with on that Sunday morning. It is easy to miss the changes when you see her day in day out because she slowly slipped away from us. I shared a video with friends today from 3 years ago of her dancing to the song that we had play at the end of her funeral. It doesn’t make me upset, it makes me laugh and smile. I lost that Nan quite a while ago, I had accepted I was never going to see her up dancing again. Its not to say that I didn’t try and we definitely got some arm movement dances but nothing quite like she had been. Whilst it made me sad that I wouldn’t see it again I wasn’t really sad for myself, I was gutted for Nan to lose that part of her.

I find looking at the stuff from years ago a comfort because it was the best times, we had so many laughs. If I am honest in the 12 to 18 months it all became really hard. The last month was the hardest of them all. I had a lot of stress with new needs Nan had and making sure anyone else involved with Nan was meeting these needs. (I won’t get too much into this (yet!)). I was assisting Nan with a lot of her eating and drinking. This isn’t a sympathy post, if you ask my friends I only ever saw it as the thing that I needed to do. It didn’t bother me because I knew I was ensuring Nan was being most looked after but in the last week of her life it was near on impossible to get her to eat a lot or drink a lot and I must admit I would get frustrated on my drive home.

Hindsight is a wonderful thing because sat here tonight I think I should have really saw what was coming because of that last week but I could never have guessed what was going on so I think I do need to learn to be kinder in my thoughts.

I think that looking back at all the happier times helps me remember that we did good, I did good. Whether it was playing music for her 3 years ago and her dancing or helping her eat 3 weeks ago every single day was about making sure she just had the best and I think that in time to come I will be able to look at every single photo and video with a smile on my face – even the videos where Nan is shouting at me! (There is a few!)

Thank you Alzheimer’s Support

Caring for someone with dementia is hands down the most rewarding thing I have ever done. I would put it above getting my degrees when I was told I’d never make it to uni. Its my greatest achievement giving Nan all that time I did and having all the memories in the form of photographs and videos was my best idea (being modest obviously!)

Its not all sunshine and flowers though and nobody going through exactly the same thing should be ashamed to ask for help. We reached out to Alzheimer’s support who were so amazing and from the moment we reached out to them I have felt like I always had somewhere to turn if I needed to. We arranged for Nan to have a weekly visit from a home support worker who quickly felt like she became a friend of the family.

Before Nan got carers and when I was doing the majority of the caring these weekly visits were invaluable. It gave me some time each week where I could stop worrying just for a little bit and I really enjoyed this time and I know that Nan did too.

Another thing I remember vividly was going to the memory cafe that they run. We only went twice because the third time I tried to take her she wasn’t having any of it; Nan was boss after all!

The cafe was very relaxed but also my first experience of coming across other carers in the same situation as me. It did upset me a little, it was the first time I felt that Nan and I had left our dementia bubble and interacted and I felt overwhelmed. I spent a good part of the next month worrying that I would wake up the next day go to Nans and find that she had passed away. Realistically there was no new reason for me to feel this way but I think I had a panic over what dementia really was. The irony that Nan would be around nearly 3 more years and it wasn’t actually dementia that took her from me in the end.

We won a plant in a raffle, thats in the picture above. We planted it when we got home, we didn’t do very good at keeping it alive but it was still a good memory all the same and somewhere I have photos of us planting it or most so Nan stood there telling me I was doing everything wrong. I have very fond memories of all the help we got with Alzheimer’s support and some of the first people I contacted after her death was her support workers because they became more like friends and family than outsiders and its a bond that I am happy to have formed.

Its because of this relationship with the charity that we have asked for any donations at her funeral to go to them. Unfortunately due to the current situation it is only close family going to the funeral and there won’t even be a donation box for us which is why a tribute site is set up for Nan.

https://margaretelliott.muchloved.com/

We have had some donations already and this makes me happy because I have fully benefited from the work that they do and I can’t praise them enough.

I am forever thankful

Sometimes we would sit on the floor.

During the years where Nan had dementia she developed lots of different personality traits. Some made us laugh, some made us cry and some made us go why? One that made me go Why? but I soon learnt to understand and in a way I found it quite cute was her need to sit on the floor.

It would be easy to mistake her sitting on the floor for her falling, but she never did. Not once was there sign of injury or distress and I always found she looked more relaxed sat on the floor than she sometimes did in her chair. So much so, as you can see I used to join her! The last on the floor episode I was there for and the day this picture was taken was Friday the 13th March this year. Lets just say the carer stressed me out just a little bit by telling me that she had called for help rather than calling me because it was becoming common knowledge between the carers that should Nan do this I’ll come and plonk myself on the floor next to her until she was ready to get up and that was that really.

The help arrived about 10 minutes after me and was completely in agreement with me that Nan was perfectly fine and actually told me that its a common trait in people to sit on the floor. Must be a safety thing? I know that Nan did it as a safety thing because she knew that she wouldn’t fall down if she was on the floor. She was worried sick about falling down. I had got very used to her sitting on the floor and it didn’t worry me at all.

This image has an empty alt attribute; its file name is 20170328_173157.jpg — This was Nan and I after the paramedics left x

This wasn’t the case the very first time Nan sat on the floor. It was the end of March 2017 that I came across Nan on the floor the first time. She was like a dead weight on the floor, there was no getting her up and back then I couldn’t be sure that she hadn’t fallen. I just didn’t know what to do so i called for an ambulance. Did she need to go to hospital? I didn’t know. The paramedics checked her over and determined that she had a chest infection, she was fine to stay home but she wasn’t fine and I now think that is why she sat on the floor. It took both these paramedics to get Nan up and back in her chair so I stood no chance but from that day I managed to get her back up myself because I waited until she was ready to help me out by relaxing and letting me pick her up!

This is Nan and I on that very last sitting on the floor. We sat and we took selfies. She played with my hair as she is doing in this photo, I say played with it she managed to essentially make a knot out of it but I would give anything to have that time back a bit. We were so happy together. We cried together, this happened a few times on the floor.. I was the one crying with Nan looking like ???!!!????. Like Becka I am just on the floor whats the issue?

Dementia really is one of the most complex difficult conditions to understand. I coped with it by getting to know the new Nan. I loved the old Nan and the new Nan. The old Nan was still there inside but the difference between the two was that the new Nan needed me so much more than old Nan ever did and I was more than happy to be there for her whenever she needed 24/7 and no-one was going to get in my way.

Becka.