Mish Mash of information and most likely not in chronological order. Please bare with me while I try to remember the sequence of events that came once we had diagnosis.
Bloody this diary malarkey (great word) is rather hard I can now see why I never had one, you really have to keep up with it or you end up like me wanting to tell you the journey but getting lost in the events. I have deleted this post a few times.
Recap: doctors visit with mum, first lot of tests completed, referred to ‘Memory team’ (quite apt) went to memory team and had more tests and the wait for the diagnosis commenced.
During this year waiting I was planning my wedding, dad was ill so many times, major infections, mini strokes, terribly bout of D&V which meant he collapsed in a hotel room only with mum to raise the alarm. Each time he had a hospital stay we would explain that he was waiting for a diagnosis. He had some stays in hospital that caused massive distress and upset to all (sometimes due to poor care). He would beg to go home, he would blame mum it was very distressing. There were calls that he may not recover and he just rallied round. We did not know if he would be able to walk me down the aisle (well walk is not the ideal term as dad is in a wheelchair). Levels of confusion fluctuated as the infections had an impact but as always, family and mainly mum just carried on and got on with what had to be done. Just before the wedding Grumpy was diagnosed with Alzheimer’s the memory team nurse came out and gave them both the news and commenced Grumpy on medication (not a cure). Grumpy made it to the wedding and managed to stay for a little but he was not well.
On the journey home mum said she was so scared has he kept on slumping and all she wanted to do was get him home. He had many more stays in hospital (in and out every few weeks) and it was exhausting for mum. I have to say I am in awe of my mother she is incredible.
Dad was assessed for 3 months by the memory team who came out with the medication each month after the first month they changed the medication and on the third month stopped all medication. They felt the medication side effects outweighed the benefits. By this time dad had really taken to his bed he had stopped really watching TV. He used to love all sport and watch films with mum but he no longer watched (there will be logs of moments of watching TV). He had become obsessed with hankies and a towel that he needed with him at all times, he slept a lot and if he got up he would never stay up long.
After a particular visit to hospital after a major bleed the decision mum came to was to ask for some help from carers just in the morning. We had to make our voices heard each time he stayed in we had compiled a medication list we had written ‘this is me’ we had explained fully all about grumpy and at times some wards were not good in fact there was only one stay which was when he had the bleed that we felt all his need were cared for and mum could have a break.
Its a bit late that I am writing this after 4 days away training. The journey has a long way to go but we know it’s going to have sadness and loss at the end. We have a group that helps and that group that my mum set up is called Grumpy’s groupies which is not for people of a sensitive nature. It is all women who love grumpy and who have a warped sense of humour but it keeps ups going.
So I will continue and tell you some of our joys that we have had and triumphs but also some difficulties and issues along the way that should not have happened.
Oh an a snippet from Grumpy’s Groupies as you can see it’s really helpful stuff but it keeps us smiling even when things are overbearingly awful.
Lets look back:
2017 Journey begins and diagnosis……….Mum had seen a number of changes within grumpy which made her concerned regarding his memory. The issue we have is that grumpy has multiple conditions and as many people know some can mirror Dementia Symptoms and also the medication he takes could have had an impact. However, mum had to make an appointment for dad at his local GP to talk about some of his conditions and at that appointment she raised her concern. She wasn’t sure she would raise it as she was worried about Grumpy’s reaction. However, Grumpy also said he had noticed things that he was worried about.
The doctor on this visit was one of the ‘good ones’ (sadly the surgery isn’t that good). So there and then the GP commenced the initial testing. Which went similar to this:
- name and address was given to him at the start.
- asked him to count backwards from 20
- asked him to say the months of the years backwards
- showed him a selection of pictures and one of the was a crown and he asked which picture related to the royal family.
- He then asked him to tell him the name and the address that he had given to him at the start.
On speaking to mum after she said for some he did well, he did remember some of the address and name, he was able to get half way counting and for the months. However, he struggled with the picture question and could not explain the crown being part of the royal family.
The doctor then said he has some markers that could mean he needs further testing and that he would refer to the ‘Memory team’ (what it says on the tin I suppose). He also asked for medication review, and full round of bloods to rule out any other condition that could mimic Dementia.
Grumpy went along to the memory team with mum and sister Joanna which is really important to have as many people as you can that knows them. As we also see different changes which helps the professionals to see the bigger picture. He was also sent for a CT scan.
During the months that followed dad fell unwell, had a number of TIA (mini strokes), post stroke seizures, bouts of infections which meant lots of trips to the hospital (not always a positive experience). Not having a definite diagnosis was hard as the hospital did not meet his needs at the time and a lot of this was down to not having it in black and white. I felt they dismissed us which added even more pressure.
I am going to continue to write about Dad’s journey. This is just the beginning 2017 was a hard year. I am aware it is not over and that 2018……….onwards is going to have more hard times.
A few things to note:
- keep notes if you notice changes
- during the investigations do not forget to breathe
- once diagnosis comes do not think life is over there and then
- know that dementia is a terminal illness and this can be something we need to support people understanding
- a diagnosis does not mean someone does not have capacity understand so remember how they feel about the diagnosis
- depression is a common reaction
- compassion and empathy will help you to support someone.
- plan for the future
- before diagnosis consider Lasting Power of attorney for health and wellbeing (only comes in to action when the person loses capacity).
Will be back with more experiences and progression within Grumpy’s journey.
By the way ‘Grumpy’ is a term of endearment that all his grandchildren use (because he is grumpy but it a loving way).
Me and Mental Wellbeing
Sometimes you just gets carried away and you forget to take a moment to just stop and do something as simple as sitting in the garden. At present I am working mainly doing “in house training”. On the plus side it is work (which if fantastic) on the flip side it does mean long days and quite a bit of additional travelling, which means I’ve not had time to stop, think and contemplate. Even on my trip to Brugge texts and calls were coming into my mobile and I was thinking abut work; which was not ideal
Currently, I have a number of new blog ideas and will try to get these down and posted soon. However, for now I am sat here in the garden preparing for next week, compiling a powerpoint for Mental Health Awareness training. Which has got me thinking and I decided to stop for a moment and blog.
Today while looking on information and refreshing my knowledge on Mental Health I was able to think of my own Mental Wellbeing (its not something I talk about a lot or even try to think about to much).
Like many people, I can say that periods of my life has challenged my mental wellbeing. While researching the prevalence of mental health I realised that more people develop mental health issues at a younger age. The amount of young people that suffer anxiety and depression is quite worrying. However, when I think back I realise that I suffered anxiety as a youngster, its just that the name was not used or the awareness of Mental Health was not what it is now.
Mental Health unfortunately did follow me into adulthood and its only now I admit what it is, I used to just ignore it and would never ever admit to labelling how I was feeling (not sure why but a hidden illness comes to mind). Some of how I felt was about loss of control and fear of what might happen to my family or friends and then it would build so I would feel anxious.
I am lucky I have a supportive husband who has admitted that he is still learning about Mental Health, and initially did not understand why I react to the simplest of issues in the way I did, and seemly blow them out of all proportion. Now though, he does and he helps me to structure things and take control which has helped. This has allowed me to manage my mental wellbeing to a degree .
I now recognise and am more aware of times in my life, when my Mental Well being has been challenged and I am trying to be more open and honest about my feeling and not hiding them away for fear of judgement and what might happen.(Work in progress)
Things that have helped;
- Taking control of my financial situation (thanks to my husband) as now I am not as afraid about money as I used to be.
- Autonomy within my career which has allowed me control (well some control).
- Trying to open up a little more to my husband.
- Being aware that I am not in a good place and trying to not ignore.
- Trying to organise my life a little more.
- Enjoying simple things in life.
- Sitting in the garden and just focussing on whats important.
Don’t get me wrong this is not a quick fix , but it has helped me greatly and given me peace of mind. I am hopeful that as time goes on things will continue to progress and I will continue to work on myself.
I sit here now and feel good and feel happy I can take moments like this (yes I am working but working outside has a different feeling). I wouldn’t want anyone to think that I am suffering I am not I am just sharing which I think is a massive step. Hiding is not the answer, feeling embarrassed is not a feeling we should feel, being scared to admit how we feel today is not allowing us to heal.
So today I am good but hey tomorrow it might be different. However, as I say make the most of the good days and feel alive as life will still be there and will still need you to breath. Just stop take a moment, look at the simple things like our cat Kobe needing attention from the most caring man I know.
Don’t forget to take pleasure in the simplest of things because that will give you joy and joy is the greatest defence against feeling low. Stay safe, speak up and do not hide away.
So you all know about my Dad AKA Grumpy, well he continues to go through the journey that is Alzheimer’s and the progress within this cruel and unforgiving disease (yes a disease not a normal part of ageing). So as a family we are now realising the importance of making memories and today was one of the days that my niece managed to make one and video the evidence for us. She captured her daughter and us all a memory that previously his grandchildren have and now great grandchildren may still have time to make. So it was great to see a video of Dad with his great granddaughter stood on his wheelchair has he drives it into the house. He actually looked like he used to be and do you know what it made me think we need to grab those memories and just store them to share with those that come after us or are to young to remember. So log it and keep it, enjoy looking back, value who your person is and don’t just see the condition. Remember they are who they were just a little buried under all the chaos that is Alzheimer’s. Its a short blog today but honestly it is so important to remember and save those moments and love them. Just take a moment and sit back and remember the person in front of you. SEE THEM!
Well what has January done for us lately? Well, business was good and looks like its taking us into February positively.
However, Grumpy saga’s still continue (reminder grumpy is my father) he has had 3 admissions to the hospital and another 3 discharge letters that are unhelpful, not clear and sadly the last one not factual. How is it someone goes into hospital for one thing and comes out with something else and really not seeming any better well in fact potentially worse? With the discharge letter leaving out vital information for the GP.
This time for my mother the experiene was distressing with a Doctor shouting at her and a Nurse (head nurse I believe) being rude, snappy and unhelful to my mother unless oddly if others were there. With the lack of understanding within Dementia and the need for my mother to be there to help so as my father does not get distressed. I don’t understand this and I clearly did not see any understanding of his needs both physically and emotionally. What fustrates me is we have completed a THIS IS ME write up to tell them about how he is, his history, his needs, his capabilities but I am not even sure they bothered reading it.
Of course on looking at the CQC report I am not surprised the hospital is inadequate and the fact that it took me to tell them to place a fluid chart in place before they did.
So why am I writing this and not naming and shaming well thats because my mother would not like that as she is very much appreciative of the NHS and of the hard work some do but also there is no point as it seems not even CQC have responded to a complaint I put in. I am therefore writing it for me. I am writing to just show that we need to try to speak up get a voice and say no to poor practice, poor empathy from people who should know better. I am writing because I want to know when Grumpy has to go back in that I know he is having the best care they can possibly give and that they consider my mother and emotional wellbeing.
What this hospital lack or at least now 2 of the 3 wards my father was on are the 6c’s which are:
These a key principles not hard, nothing you need to be taught really, things that we should expect and things I remind people of when I do in house training.
So where are we now with grumpy, well he is home. mother is managing and is doing as always and amazing job. Best put that she would do better if the council came and got a bed that has been stood in her garden for nearly 2 months.
Mother his helped by some (what should I call?) gentle jibes through the facebook group Grumpy’s groupies. It have got worse by the way with the content to bad that I can not screenshot much of it. This group continues to do its job of light relief and offloading. Its important to know when you need to be serious and when you can just show how nuts you are as that is what this group is about. ‘Its not all about Grumpy’. It has to be about our mum, our grandma it has to be to ensure she is kept up beat in times of adversity.
So bravely I share some of the content.
As you can see its so wrong but for my mother it is so right its her place and she gains so much as do we. Try it. Caring is hard butcan be made easier with the right support and right dose of nuttiness.
Hey feel free to share you groups. Smiling and laughing is important. Take care of each other, speak up and be the persons voice and know your rights.
If people have read some of my blogs in recent times you will know my Mother is the carer for my father who has many health conditions including a recent diagnosis of Alzheimer’s disease. Last night at 9pm he showed signs of being unwell and needed some medical attention. My mother is 70 years old and she wakes every day at 5:30am – sometimes even after not having a good night sleep. Since the diagnosis, dad can get unsettled and have some obsessions.
After making the first call at 9am it took until 2am for medical attention to arrive at their home (not a complaint as it was a busy night for the services), so by time dad was taken in and settled they did not leave the hospital until 6am. As you’ve probably realised, this is over 24 hours since my mother woke up – over 24 hours without sleep, for a 70 year old. She never once complained once though, she just got on with it and took it all in her stride – because that’s who she is.
My mother (who at this point had my sister, Joanna with her) had been awake over 24 hours. So as I write this I am hoping she is sleeping and hope that my dad is being looked after well by any nurses or doctors. We have as usual all come together to support and make sure she has someone with her and we are thankful for the family we have.
My mother will wake and just continue.
She is a carer, but, ultimately, she is a wife who loves her husband and who wants him to be safe, well and have a meaningful life – a meaningful life with her. So she finds the strength to carry on being the best carer that she is, every single day.
So, from all us groupies and all the others in our mad, slightly odd and special family, we appreciate you and what you do mum. We love you and thank you for showing us what love is and how we should care and love through adversity.
I would personally like to thank Joanna for staying with you and making sure you drove ok (terrible back seat driver).
So today, anyone out there who is a carer of a loved one, know that we are grateful, we value your courage and strength. We know you won’t ask for help but know the help is there. Know that we see your tiredness and hear your weariness. We know its bloody hard, it’s frustrating and sometimes it’s like being in a nightmare. We know you do this because you love and you feel you must to do what is best for yur family – you need to know your loved one is safe and cared for after all.
You do what you do so well that we are all in awe of you. We all hope that we will grow in our own strength. We know you are the role model. If we could, we would bottle who you are, so we could share it around to all who are vulnerable so everyone gets equal quality care. You are who should be training our carers of today, you are the training material we need. YOU ARE THE REALITY OF CARE AND CARING.
The name of a small family group which was set up to chat and keep each other informed regarding my father (AKA GRUMPY). My mother set up the group (she has become a great user of facebook sometimes embarrassingly) she though it would be good to be able to let us know to be aware when she needs a nap in the day and so the idea was to post things like bad night so phone silence. Or grumpy not great today, etc etc. So all about gumpy.
Well interestingly its sort of turned into a group of women discussing life, issue, concerns, comfort, love and honestly. Well sort of but in reality its got gossip, good news stories, current affairs, just basic bitching and offloading of being a parent at times for some. I should say but if of the sensitive nature you maybe offended with some of the language and discussions I am going to share with you.
Oh with some of the members they have learnt how to add GIF’s and the joy of that can be that a whole evening communication is just through the art of GIPH’s its a GIPH OFF.
So as the start:
So all in all not a bad start within a group know check how Grumpy is and check how Mum/Grandma is dealing with things and if we can be of morale support.
However, here is the opposite to what the start was:
Now I know the language and content is terrible and I can only appologies, I will be sharing more and they will make your hair curl but do you know what this is my mothers life line.
We were able to respond at the weekend quickly when mum posted a video on how Grumpy was so confused and unwell it meant that she got people round to help quickly and to support her to call for assistance and get medical attention for Grumpy. So here is how it helps:
No Grumpy is home with a camera in his bedroom for mum to keep and eye on him. We managed to keep everyone informed and it worked.
So I will share more insights at a later date, but on a serious note, remember to check on each other support the person who has to support their loved one 24/7. Remember they need to be able to laugh through the hard times and realise life goes on even when thing are hard. Everyone one needs to be given a laugh and at the moment the Grumpy’s groupies are full on with the messages today to the point I am struggling to get my work done.
So enjoy the snippets as I say there are more and here are the ones from today:
My family support group we look after each other. Sort of
I was in the process of writing my blogs when a question from a conversation I had had with my mother that morning crossed my mind.
That question was – Quality of life, what does it mean to people?
During the conversation with my mother we spoke about my fathers’ current health and his recovery after a recent bout of pneumonia, which then led to diagnosis of emphysema. I should add at this stage that he has also got Alzheimer’s.
Currently he is taking a medication for his Alzheimer’s, as well as steroids to help his lungs. This combination of medicine, my mother has explained to me, has made my father more awake, engaged in TV and films and less confused.
However, she is concerned that since today is the last day of his steroids, he will decline again and she will end up rushing back and forth to hospital.
So I said then maybe they should look at giving the steroids full time if he does go downhill; as quality of life is so important.
My family knows that my dad will deteriorate, and know what to expect. We will ensure that his choice are respected, and that we all love him as we always have.
Yet, whilst we must ensure that he has quality of life, we must never forget that my mother (his main carer) is entitled to her own quality of life.
Of course she is happy he seems much more aware and awake, but it has impacted on her ‘quiet time’ as she calls it. In the past she would assist dad to bed and then have time for herself to surf the net, embarrass us on Facebook and to watch ‘Hollyoaks’ but at the moment she isn’t having that. She confided in me that she was feeling Guilty about feeling Selfish for wanting her ‘quiet time’
But do you know what she isn’t selfish and she has every right to have a Quality of life also.
As a loving, and caring, carer, who looks after her Husband each and every hour, of each and everyday. She should not feel selfish, if her ‘quite time’ is disturbed.
It’s this ‘quite time’ that enables her to recharge her batteries, have a bit of ‘Me Time’, and is vital for her own well being, health and mental health.
It is critically important that she is able to communicate her thoughts and feelings and not be judged, but instead be listened to and supported.
I believe quality of life is key to my dads and mums continued happiness. My mum will ensure my dads quality of life, my family must support and listen to my mother to make sure that she has her.
That support is vital to all carers in this world.
Don’t forget to care for the carer. Don’t let them silently blend into the background.
So in conclusion I feel quality of life to me is about:
• Maintaining identity: ‘See who I am!’
• Sharing decision-making: ‘Involve me!’
• Creating community: ‘Connect with me!’
For both the person who is being cared for and the carer
Let me know what you think? Share your understanding please.
So I have done it, I have commenced my own business called Attention to Care which is a Health and Social Care training company based in Cambridgeshire area.
I have a lovely website that is still in the process of being changed and altered, a face book page and business cards on the way (second time lucky as I missed the ‘n’ off).
Well I have worked within care for 28 years in some role whether support worker, manager or trainer/assessor I still see approaches that could potentially place people at risk. So I want to educate, value and nurture the carers/managers/employers to enable them to provide the ‘best’ service they can to vulnerable people. The way I know I can do that is deliver, bespoke and best quality training I possibly can.
Its been a while since I posted and a lot has happened, my father has been unwell and recently diagnosed with Alzheimer’s and Emphysema. Which is rather a big deal and I am very aware that even though I deliver Dementia Training that I have to be just a daughter and sister when speaking to my family as I don’t want to be the one that has to inform them of everything as otherwise I believe it changes my relationship. Don’t think though that I don’t talk about it and support my family with information they need I just don’t speak like I am training.
This is a brief blog but will try to now get more completed and find resources to share on my blogs to try to support you carers out there.
Please check out my site and please share.