Loss and what you can expect!

Loss is such a unique experience for each person.

Sometimes we hear the news and immediately scream with sadness. Sometimes we start moving at hyper speed and make all the calls to inform people. Sometimes we are at a standstill, with no actually understanding what has just been relayed to us.

It’s unique. Unique to every person.

One thing I know, is that no-one can tell you how to feel or how you should be feeling. They can’t tell you to stop feeling or feel more. It is something that must happen when and as it wants. It must be organic.

Sometimes, you might feel the need to put on a façade. Sometimes you may hold back those feelings, simply because you don’t have the capacity to deal with them. Sometimes, loss brings anger – and that anger may have to be withheld.

Loss has a way of placing you in a state of turmoil, a turmoil that flits from one emotion to another within seconds. All I know is you can’t fully control it. It doesn’t run on a timeline, it doesn’t know how to fit into your life and come at the best time – purely because, well, there is no good time for it. That’s why, some people struggle more, some struggle less and some pretend. Many people are already dealing with struggles of their own and when loss appears, it makes it hard to see the wood for the trees.

I have recently been through a loss. Grumpy (my father) who I have spoken about before died 3rd April 2019. He had Alzheimer’s and in truth, I feel we commenced grieving from the day of his diagnosis.

I did not get back home to him in time. Suffice to say, this has affected me immensely. I feel regret.

I wish I could have seen his face one more time, I wanted to hold his hand one more time, I wanted to feel his love one more time. This is a comfort I wanted to give myself. A comfort I think I deserved. It’s not selfish to want this for myself; it is normal. I wanted to say, “bye dad”, “see you later” or just plain old “love you dad”.

I will get through this and I will continue to live the best life I can, but it may be be a little tarnished for a while. Perhaps forever, but that’s okay because at least I am feeling.

What I take from the loss of Grumpy is that in death, there is life. Great good can come from intense sadness and loss and this is exactly what I feel with the loss of my father. Grumpy chose to have his body donated to medical science and my mother tirelessly worked to ensure he got his wish. He could be the bridge between life and death for future generations. He could help scientists find more information about Alzheimer’s to lead them that step close to a cure. Ultimately,I wish he was still here, but only here at his best, at his strongest and at his happiest. I wish he was here to tell us we will be okay, even though I already know we will be. His comfort and huge presence will be missed more than words can explain. This has emphasised a fact I always knew to be true – making memories is the most important thing. So, please, everyone, make them and cherish them. Don’t waste a moment. Memories remain and pain disperses.

Don’t worry about how you feel. Just feel what you feel.

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Wishing that sometimes We didn’t know what We know!!

Decided that sometimes knowledge of something can make you know too much.

I am sure this sounds like I have possibly lost the plot but I have worked in care for 30 years. Supporting people to develop skills, keep skills and to be cared for through the end of life process.

Some people would think knowing information or knowing what’s to come is a good thing. However, not always as at the moment it isn’t. Knowing the progression within Dementia and knowing the end of life process means, I know what my dad is possibly going to go through. As a trainer in social care I stand each month and teach about dementia awareness which has an impact on me as I am actually talking about what might happen to my dad, over and over (I love my job but it can be hard when going through something).

Knowledge and experience

As my dad progresses through the dementia journey I struggle to get those images out of my head of people I have met, cared for through this incredibly harsh disease. I see the people screaming as they are being cared for and shouting for mum because they have forgot the reality they are in. I see the progress of having to assist the person to eat with a puréed diet because there swallow has been effected. I also see the families broken and frightened of who they now, don’t really know. I see the daughter visiting their mother but she no longer remembers being a mother. I have also been lucky enough to be with people at their end of life and know what it can be like sometimes I wish I did know as I am sure others wish they didn’t know.

My reality at the moment is wishing I didn’t know wishing I was being told by a professional at each stage rather already knowing quite a lot all at once so I know the possible end journey.

Just a family member

We forget that people who work in care or in the caring profession whether a doctor, nurse or care worker that they will have loved ones who may be suffering from a condition. But just because they have the knowledge they are not a doctor, nurse or carer when we are talking about a family member they are just a daughter, son, husband, mother etc. They too will be on the journey and even though they can’t forget what they have learnt or seen they will wish they could for a day so they can be just like everyone else and be the daughter, son etc.

Dementia is a journey for all. Just remember to enjoy the good days and role with the punches on the not so good days. Do what you can and just love each other.

Take care all.

What gets people to read?

Still asking the question. What gets you to read?

Attention to Care

What gets people to read is my question today?

I am thinking of what makes me read something and I am struggling to know what. Here are some of what gets me to read:

• the intrigue that gets me looking further, the expectation that it’s going to be a SURPRISE!
• the title that gives me a question to be answered and only can be answered if I continue to read.
• the expectation of what something is going teach me
• the fear if I don’t read I will miss out on something that can help me
• the assumption that I know what something is going to include so I make an informed choice
• the lack of understanding of a title so it’s a MUST read to see if it’s really what it says on the tin (title)
• I also like a title that may hold a conspiracy theory
• lastly I choose…

View original post 41 more words

What gets people to read?

What gets people to read is my question today?

I am thinking of what makes me read something and I am struggling to know what. Here are some of what gets me to read:

• the intrigue that gets me looking further, the expectation that it’s going to be a SURPRISE!
• the title that gives me a question to be answered and only can be answered if I continue to read.
• the expectation of what something is going teach me
• the fear if I don’t read I will miss out on something that can help me
• the assumption that I know what something is going to include so I make an informed choice
• the lack of understanding of a title so it’s a MUST read to see if it’s really what it says on the tin (title)
• I also like a title that may hold a conspiracy theory
• lastly I choose if I think I may have an opinion of the topic, if it’s near to my passion.

These are some of the reasons I read certain things and not others. What are your reasons you read articles, posts, tweets or books?

 

Social Care and the NHS…

For the last few days I have been ‘tweeting’ I am new to this and just wanted to be more pro-active. I have had a good time just commenting and retweeting tweets until today. I know social media is known as a bit of a harsh place to be at times. However, being part of the care industry and training both nurses and carers I think it is important to be fair when posting about social care and the NHS. I made a comment that it is not only social care that has the poor care but so does the NHS and the response from a particular person was rather harsh. Telling me that NHS is superior and telling me ALL social care providers are rotten (not word for word but that the tone of the comments).

I am not disrespecting the NHS I am grateful for it but when will people understand bad care happens in the NHS to. We as a family have witness this on a number of occasions (not just once). It seems everyone is quick to speak negatively about social care both home care and care homes. Don’t get me wrong I have been honest about our experience with home care also but lets ensure we are not constantly thinking the NHS is superior to everything. It has it’s faults as does social care.

Social care is so devalued and until we value it more we will always have people saying all social care providers are bad and all NHS is superior.

There are many things wrong and one of the things wrong is providers not being held responsible or monitored properly by local authorities. Recruitment of managers, recruitment of care workers not appropriately done. However, the issues are similar within the NHS as well and we should not forget this. The lack of monitoring of how a ward is run as I just don’t get that in the same hospital wards can be so different.

We must push care/nursing/healthcare as a chosen career so we need to show that society and politicians value it . Time we pushed the best practice that is out there, time we were more constructive with our concerns, time to be a solution so if you have a concern do speak up regardless of whether it’s the NHS or not.  Local authorities and CQC time to really understand that one persons experience is important to check out. Time we had zero tolerance of poor practice and care. We have the 6 C’s lets make sure they are followed. Stop thinking all are bad there are so many good providers, hospitals, carers/nurses out there. Stop tarring all with the same brush.

I don’t expect all to agree and I don’t mind if you disagree but once I replied to comments today the person sent me a very harsh reply and placed a screen shot of may profile up. It felt like I was being bullied into shutting up. Sadly my confidence on social media is still not up there so I deleted and blocked the person. I am not about airing my laundry in public. I am about being fair. I am about voicing an opinion. I am about learning from others. I will continue of Twitter but it has left an uncomfortable taste in my mouth of how people can be. Kindness and respect cost nothing.

Mum is on her own journey as a carer.

I have been writing this for week and since I started writing this Grumpy has been in hospital for 13 days. He has just been discharged today after yet another up and down stay within Scunthorpe General Hospital. “Frustrating’ is the main word possibly to use.

Some of you will know that my mum is the main carer for Grumpy (my dad) she is a an incredible woman and has had a life that has been full of ups and downs. She has always aimed to survive and she without a doubt continues to show this.

My mum has been married to my dad (grumpy) for over 53 years (I think). She met my dad as a young woman and they eloped to get married. Times were different then and she made choices that were of the time. Mum and Dad have had a tricky at times marriage but in later life they found their peace together after tragedy.

They went away every month for 5 days and loved every moment. However, in the last 2 years this has not happened due to Dad’s decline both physically and mentally. Now mum’s life is back to having to survive and not break. Not speaking for mum but I am sharing what she has shared with me as I am sure others may be going through similar and sometimes just knowing your not the only one can help.

Mum is Grumpy’s main carer she has some support in the morning for 30 mins from a care company (the trails of that have added stress also). Mum manages all Grumpy’s medication, she ensures he eats, drinks, that he still goes out (only to supermarket now), she manages finances and she manages his appointments with so called professionals (so called as some have let mum down enormously).

So her journey is full of frustration, anger, sadness, bereavement, bewilderment,  paranoia, jealousy and noise so much more. I will explain each of the words and what it means in the journey for mum:

Frustration:

Not getting support from professionals, not been listened to and no follow up from appointments. In fact her time is taken yo chasing constant answers. She has no one to support from the professional side. Not seen a consultant and having a GP surgery that do not follow things up. This is one of the biggest frustrations.

Anger:

Poor care and lack of dignity given to grumpy which is unacceptable on every level. Mum shows her anger very clearly and has now show how empowered she has become. She has had to raise her anger very clearly and we thought the last stay was the last time we would be annoyed but actually the stay this time caused issues of people not doing their job. Placing Grumpy at risk. It’s just a waste of energy that mother can not afford to lose.

Sadness:

I think sadness would be the loss of the trips and expeditions she used to go on. She seems sad most when she has  been stuck in and not had access to the outside world.

Bereavement:

Losing the man she married. It’s bereaving a loss before it has actually happened. Knowing this is only going to get worse.

Bewilderment:

Being just shocked at the fluctuation of good days and bad days. Not knowing what the day will be until it gets here.

Paranoia/jealousy:

This is Grumpy  having delusional and paranoid thoughts that he voices and this has caused enormous upset to mum. She has been told she has someone in the back bedroom, she has been told she has left him in the house alone, she has been told she has waved to men and it goes on and on. With Grumpy and his Dementia it his hard to know if this is an old personality trait coming out or being more apparent of if its him seeing things or hearing things or interpreting things in the wrong way. Either way it broke mum for a few days she had no sleep hardly, she had to be blunt and firm. She actually changed her approach which worked for a while or is working. What it showed me that in mums journey she is in control more not controlling but able to stand up for herself and she must.

And Noise

Repetitive counting, 1, 2, 3……. then ‘Oh dear Oh dear’ then months of the year and so on and so forth. Its when ever dad is awake and mum has now had to purchase herself some cordless headphones. Just to drown it out.

 

IT is a journey for mum that is exhausting, sad and damn right SHIT.

 

 

 

Grumpy’s Dementia Journey.. No more parts just a journey!

It’s hard to keep up with blogging with work, being a mum and trying to do the bit I can to keep mums spirits up, all be it via Alexa Show .  No longer will I be saying what Part the blog is. I will just write and hope someone will read and it may help or at least it may make you feel you are not alone.

Previously I have mentioned Grumpy and his hospital visits, well we have lost count as a family on how many different visits he has had as an in-patient and sadly many of the times we have been left flabbergasted on the lack of understanding after each of the stays.

I feel he has had one ward where we felt all his needs were taken care of and meant mum could relax a little. However, on a recent visit for a routine procedure Grumpy ended up having to stay in and I know I talk about Grumpy’s journey but my mothers journey has also been incredible both positively and negatively. On this stay the ward left my father sat in his disposable pants (with a continence pad on) and a vest in a ward with 5 other people at visiting time. My mum walked into see him sat there with no dignity being met at all. Very distressing to see I can imagine. As she walked in he begged for the toilet (he had had something to clear him out for a procedure), mum went to get help as that’s what they said she had to do. She went to the desk where they were all sitting and the head nurse said press the bell then someone will come. So she had to walk back to the bedside press the bell. Eventually someone came and her word were ‘you can’t possibly need to go again I just took you” (remember he had something to make him go). Clearly he need to go.

This ward we knew was not good as he had been on before but this time the care was worse (don’t get me wrong as a family we value the NHS). Its was also, found out that they had not given him 2 of his medications (both controlled drugs) even though his prescription was clear etc, however, initially mum did not know this. It wasn’t until the next day she visited that he would not wake up the man opposite said he hadn’t eaten (grumpy is a diabetic) and he hasn’t moved. Sheer fear set in mum said and they tried to wake him. He didn’t wake until the doctor came and said he can go home. Mum debated this and the doctors words were to wake dad up and then say ‘well there is something wrong but not sure what so we will give him antibiotics’. Mum at this point knew she had to take him home and as they came with the discharge record that is when mum went up to the doctor and said ‘I know whats wrong with him, he is in withdrawal because you failed to give him these 2 medication’. There is more like the medication not been locked away on his bedside (bag of them) with controlled drugs in.

The journey my mother has had is that she decided enough was enough and I supported her to raise concern with CQC and then CQC said it was safeguarding so we went to the local council and logged a safeguard. Mum goes Thursday to make sure they think in future but also to understand how they initially tried to justify things.

This is a part of the journey mum could have actually done without. This shouldn’t be necessary and so even though this is rather negative post what I want to say is that it is important to speak up. You must be empowered to say NO. You must be the voice of the person you care for sometimes. It’s time people stood up and shouted that we expect more we don’t expect bells and whistles we just expect Care, Compassion, Competence, Courage, Communication and Commitment 

Dad has been well since the visit mum got him home and got him back into his routine. Don’t get me wrong his dementia is progressing and mum has had some really exhausting times which I will write about but firstly I need to check she will be happy for me to share some of the journey as it’s very personal.

Hope you enjoyed reading.

Innovation and Social care :( :)

Innovation is a great thing it really is and I am all for change and progression. On reading a few months ago about the Alexa assisting within loneliness for people who are in care homes or home care I was sceptical in the idea that is was going to relieve pressure on carers. I was sceptical as the outreaching idea had made suggestions that it was going to be doing task carer do and so less time to be with the person, this is where I then get very frustrated about as replacing human contact will never be the best thing to do ever. It may alleviate loneliness in the sense when the carers are not there that it can be set to read or play music but not instead of carers please.  It could also mean that the individual could raise the alarm if they fall if they are able to. Or to call if there is a potential intruder, also, if get a camera and an Alexa show then they can see who is at the door. So there are uses but not to replace care. I know personally that actually the Alexa has been a great thing for my mum. I got her an Alexa show and she loves it and it has really given her something to do but also, she can call me on it and she can carry on doing things as she chats and she has. I believe it great for her as a carer for her husband.

Then this morning I read an article about a robot being heard in parliament and the article stated ‘robot to care for nations elderly population’. I understand cuts and innovation but come on please again social care is been undervalued and stating in some sense (I know not fully) that a robot can replace a human to care for people. It doesn’t just talk about loneliness it talks about caring. It got me thinking about the people that are most vulnerable that require carers/support workers etc, some of the people we are talking about have, dementia, mental health problems which means sometimes they are hallucinating which can you imagine having a robot around your home when you are in a crisis with your mental health conditions. How scary. It mentions care homes, well most care homes will have people with Dementia and I am sorry but if you work in care you know how residents can react when they don’t recognise a human or when they have a piece of equipment brought to them.

I am frustrated I really am and that’s because we are looking at cheapest option (I know money is tight) and already politicians, society do not value the work social care does and here we are lets use robots. If we are doing this in social care then why not replace teachers, doctors receptionists or hospital porters with robots? Why not replace other frontline staff? Lets not just focus on care work and the social care industry. I am sure someone will say they are not but to me this is what it feels like. Innovation is great and I am still interested in reading more and seeing what more of the ideas they have but remember people first always.

Please feel free to debate.

Dad (AKA grumpy) Our families Dementia journey part 2, 3 and maybe 4

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.

 

 

 

Dad (AKA grumpy) Our families Dementia journey

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).