National Carers Week

This week is National Carers Week

There has been so much Information in the media this week regarding ‘National Carers Week’ and as a carer myself I am so pleased to see this information being promoted through Twitter and Facebook via Carers UK, NHS Trusts and Care Support Agencies across the country.

Research shows many people don’t expect to take on an unpaid caring role but every day 6000 people starting caring for a loved one and I guess I am now one of them.  As I have said many times in my blog, I never expected to be in this position but I have taken on this role and I see myself as the main support for the health and wellbeing  of my lovely dad.

Therefore, I would like to give a big shoutout to all of the wonderful Carers out there, who have taken on the role of support for a loved one, family or friend.

Happy Carers Week ❤️💙

Torn between decision’s ‘Caring’ or ‘Career’

Time for a big decision – Is it time I went back to work?

Throughout the month of February and March I have been thinking a lot about the possibility of returning to work.  As you will know, if you have followed my blog, I have just spent the last year caring for my Dad, although my caring role started back in April 2015 when my dad had his heart attack, I was still employed, and was lucky to be allowed to be quite flexible with my hours, as well as working from home, allowing me the time to look after my dad.

However, when the chance of voluntary redudancy came up, I jumped at the chance, and was happy to have this agreed.

The last year has been difficult, but my dad needed me, and I was happy to be in a position to take on the role of his carer (although my dad always said, he would be ok if I went back to work, I knew this was not the case, and I needed to take responsibility for his wellbeing) Dad has had no further issues with his heart, he continues with his medication and uses his inhalers, which all help, but the diagnosis of Parkinson’s and his ongoing COPD, plus the onset of short-term memory loss has added to his overal health issues.

My dad has lots of good days when he is really well, and then other days he does not feel up to doing anything, when he feels exhausted and tired.  These are the days I find hard, as I always try and involve him in everyday life, and encourage him to come out and get some fresh air, even if is just a short car journey to the local shops, or a visit to the garden centre (which he loves) but saying that, I do know when I need to leave him be, allowing him to just stay at home reading his paper, and watching television.  Dad sleeps a lot these days, and I am aware once I leave him during the day he will have a sleep on and off throughout the day.

Looking at the possibility of a return to work has been on my mind for the last few months, I always thought that I would return, I envisaged taking at least a year off, and I have done all I can within the last year to get the help my dad required through the community services teams.  This consisted of cardiac therapy, rehabilitation programmes, physiotherapy, speech & language therapy, and most recently assessment at the memory clinic.  All of which my dad has found helpful and supportive throughout the last year.

Over the last few months I had been able to see my dad taking more of an interest in things, looking forward to the spring so he could enjoy planting in his garden, and the warm weather had certainly brought out the best in him.  I was starting to discuss my return to work with him, and he was quite supportive of that.

Dad has always said that I should do what I needed to do, and that he would be ok, but that is easier said than done when you see such a dramatic change in someone who has always led a healthy, active and independent life.

So, my decision to return to work was made, I started to look for work, applied for a few posts, nothing really exited me, but they were within my area of expertise.  I was short-listed for one post, and attended the interview, but wasn’t successful, however it was all experience for me, as it had been over 10yrs since I had an interview.  My progression in my career had come with promotions within my work area therefore, interviews were something new, but I was ready to take on the challenge.

During the early part of the year from January to the end of February  my dad was doing well, and looking well, he seemed to be taking an interest in himself again, and looking forward to the warmer weather.  I was continuing my search for a new post, and we discussed the possibility of putting a care package in place for my dad, just  a few days a week, which would give me peace of mind that dad would have professional Carers popping in to check on him, if I was to return to work.

In early March I found the perfect post for me, it was in my work area, it was something I had done for the last 12 years, and I was really excited to see a post (which doesn’t come up very often) that I knew I had all of the essential criteria, the background, the qualifications, and the experience. . .I applied for the post, and patiently waited for a response. . .

However, a few days later, after a visit to dads GP we were informed his on-going blood tests were coming back with worrying results, these had been repeated throughout February and March, the results had shown a drop in dads kidney functions and his blood count was low, he was showing signs of  aenemia and weight loss.  Dads GP went through a series of questioning on health matters with my dad, and subsequently referred him back to the hospital, continuing with checks on his bloods etc. . Another worrying time.

Dad had started to look poorly, he was getting tired easily, exhausted when walking for no more than five or ten minutes, and he was also struggling with his balance and coordination.  I had noticed his short-term memory was becoming worse over just a short space of time, forgetting his medication, taking his evening medication before his morning medication, or not taking them at all.  I was forever finding some of his medication in the bin, and on questioning, my dad couldn’t remember how they had got there.

I had to be careful just how much I pushed my dad, as I didn’t want him to feel confused, therefore I would take it one day at a time, start again, and make sure I was always there to put his medication in his hand throughout the day, and watch him take it. . I hid all of the medication, as I didn’t want him forgetting he had taken it, and looking at taking more! I was feeling very worried, and in need of some help and support myself during this time.

Throughout this time, I was wondering if I would hear anything regarding the post I had applied for, I was already having mixed feelings about my decision to go back to work, and these issues were bringing me back to the worry I had about leaving my dad.  Within the next week, I received an invitation to attend for interview for the post, I had two weeks to prepare a presentation for the interview, and I was really happy to have been invited.

My worries regarding my dad had increased, but despite this, I accepted the invite for interview and proceeded to work on designing my presentation, but my mind was in turmoil throughout this time.  I wanted to attend the interview but I had to address the possibility of not being able to accept the post if I was offered it, due to the increasing awareness of my dads health issues, and my responsibility for his welfare.  I felt torn between my need to continue with my career, and my dads need for me. . .

I made the difficult decision to inform the employer that I would have to decline their kind offer of interview and explained my reasons, thanking them for the offer, and wishing them good luck with their recruitment.

My decision was made, I needed to be available to support my dad through these on-going tests, as well as supporting him with his every day needs, especially with the worrying sign of his failing memory and frailty.  I couldn’t consider putting his welfare in the hands of other Carers, I had come this far with him, I couldn’t leave him to deal with this alone. .

Progress – Positive Reactions

Its good to see a positive reaction to the long awaited therapy group:

In a recent post in October I  wrote about my disappointment of the cancellation of a much awaited ‘Speech & Language Therapy Group’ which my dad had been assigned to in August.  After just 2 weeks on the programme my dad had been informed of the lack of available staff to continue the programme, which had to be cancelled and would be rearranged for October.

Although this did not happen in October, I am pleased to report the programme has now been rearranged and my dad has just completed his 2nd week of group therapy.

These sessions take place at a local GP surgery not far from my dads home, I usually drop him off at 2pm and pick him up at 4pm.  After his 1st session, dad seemed very positive about the group therapy and seemed to have enjoyed meeting other people who have the same problems he has been experiencing due to ‘Parkinsons’

I was really happy that my dad was back on the programme and this time the group seemed to have a lot more people in attendance.

This week when I dropped my dad off at the session I was happy to see him greet the other members of the group with plenty of humour and he seemed happy to see them, this was positive for me especially as I could see a little bit of mischief about him (something I have not seen fo a while)  however, when I was about to leave, letting dad know I would be there at 4pm to pick him up, a lovely elderly lady who was sitting quietly opposite the group spoke to me about dads singing? I approached her, as she was speaking very quietly and I didn’t quite hear what she had said. To my surprise, she told me that she hoped she could hear my dad’s singing soon, I asked her if my dad had been telling the group about his singing with the ‘Irish Guards Choir’ and to my surprise she explained he had been telling the group all about his 12 years singing with the choir, as well as his hopes to join them again one day.

This made me really happy as I had asked my dad if he had participated in the last group discussions and asked if he had spoken about anything of himself in the last session, but he didn’t seem to remember this.  I guess the little short-term memory loss can have that effect on him sometimes and it’s easy for him to forget things while trying to remember other things, such as his fact sheets and his homework (voice excercises)

On my return to pick dad up from his session I noticed how in tune he was with everything going on, it was lovely to see him chatting with other people and looking forward to seeing them the following week, dad even had a plan of action as he greeted me, he suggested we find out if the Irish guards choir would be performing any ‘Christmas Carol Concerts’ and wondering if he may be able to join them!

This was music to my ears, as dad had not showed any interest in joining the choir since his last visit to their practice session last Year.

This was a good day, a day when dad had planned something, a day that I was happy to support an idea and look into making this happen for him (that’s my plan of action for next week)

It would be so lovely to see my dad dress up in his uniform again and attend a carol concert at this special time of the year, I do hope I can make that happen.

Over the last 2 days I have seen such a positive mood in my dad, he has been chatting more, joining in with family conversations, even joking and tormenting his grandson, like he always used to do.  It’s all positive this week, what a difference a few sessions of group therapy can do to lift a persons mood.  I hope this continues, but on the other hand I really wish these sessions had gone ahead when dad was first diagnosed with ‘Parkinsons’ a year ago as everything I have read about, all points to the importance of early therapy sessions to help with the symptoms.

These pathways should be in place for all ‘Parkinsons’ patients and they should not have to wait over a year for these to be put in place, as early treatment or therapy helps with the problems they face and can help them in various ways.

 

Who Am I? – The Real Me. .

who am I?

Let me introduce you to the real me, the person other than the ‘Daughter’ and the ‘Carer’. . . I have so many other things going on in my life other than caring for my dad that I would like to start introducing them into my blog.

I will still continue to write about my dad but I will incorporate life as I know it beyond the caring role, hopefully bringing in some fun and good humour into my blog, as I try to do in everyday life.

We all have responsibilities that we deal with every day and we juggle those things while life as we know it, goes on.

Some of my days can be so hectic, I meet myself coming back, other days can be filled with fun, and laughter that I feel thankful for what I have in my life, then there are days when I can feel so tired and stressed that all I want to do is sit down relax and take an hour away from everything and everyone. .

So here we go with the introductions:

I am a ‘Mother’ (Mum) and a ‘Grandmother’ (although I’m known as ‘Nan’)

I have a daughter aged 32 and she has two daughters aged 10 and 7, my beautiful granddaughters whom I adore, they fill my world full of mischief and wonder, love and affection, fun and frivolity 😍 and I cannot imagine a life without them now.

I have a son aged 29 and he and his partner are expecting a baby in the new year, another little bundle of joy to love, and we already know that the baby is a boy! So my first ‘Grandson’ is on his way. How wonderful!

Both my children and grandchildren are very close to me, and I am a mum who is always there if they need me, and that can be pretty often sometimes.  I help out picking my granddaughters up from school two or three times a week, depending on my daughters working hours.  On the days I do the school run the girls come back to my home and we all have dinner together with my partner and my dad.

Dad always enjoys the time he spends with his great granddaughters, and I must say, I love these times too, as it brings out the mischievous side of dad, which shows that he still has that sense of fun in him when they are around.

The girls adore their great granddad and always take time to provide a kiss and a cuddle when they arrive and leave.  The girls love to draw and they always include granddad in this, they love to give him instructions on what they would like him to draw or colour in for them (I think this helps with his cognitive skills) they always have lots of stories to tell him, which he loves listening too, or they just cuddle up on the couch with him and watch TV.

My son (who still lives at home, hopefully moving into his own place before the baby arrives) and his partner join us all for dinner when dad and the girls are around, and it can get quite hectic, especially as he is the favourite uncle who loves tormenting his nieces, and they in return, love chasing him around the place.

As well as the daughter, carer, mother and nan, I am the childminder, the taxi, the bank manager, the advisor, the personal shopper, the cook, the cleaner, the gardener, so basically the equivalent of: SuperWoman – Well, that’s how I feel some days. . . 🤔

Oh, I almost forgot, I am also a volunteer Lay Member on the Safeguarding Children’s Board.  I attend board meetings and audit review group meetings, all of which give me the chance to challenge and discuss the services provided to children in my local borough.  This is an interesting, sometimes daunting role, but it gives me a distraction from my caring role, and keeps me attached to a network of people.

I will be including new posts about my hectic personal, professional, and family life and how this all fits in around my dad needs.

I do hope you will enjoy the posts. . . Have a nice weekend 💫

Take Time To Admire Nature – It’s Good For Your Wellbeing!

A Walk In The Park:

I took some time for me today, some time to watch the park at play.

Nature at its very best, an array of colours had come to rest.

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I took some time to stand and stare, stunning colours everywhere.

Autumn winds had done their duty, bathing the park in all its beauty.

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I took some time to ease my mind, capturing my thoughts inside.

Nature brings out the best in me, a relaxing positivity.

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I took some time to reflect on me, realising I’m where I need to be.

Nature changes with the seasons, without asking for the reasons.

 

Daughter or Carer?

I see myself as a ‘Daughter’ first and a ‘Carer’ second, some would say I am the unpaid ‘Carer’ . . . But I don’t see it that way!

I find it difficult to identify where my responsibilities as a daughter ends and my carer responsibilities start, is there such a thing as a fine line between the two?

I am all dad has and I will be there as long as he needs me, I’m his daughter, his next of kin, the person he relies on. .

It’s been a difficult week, one where I have come to realise that dads condition is getting worse as time goes on, and the events of this week have given way to a number of new anxieties in the ongoing symptoms of dads Parkinson’s disease.

My concerns led me to arrange a checkup with dads GP, which gave me the chance to discuss a new worry, and that is the realisation that dad is having some problems swallowing.  I am aware this is a common symptom of Parkinson’s disease, but doesn’t affect everyone.  On questioning my dad, the GP asked when this had become a problem, but with dads failing short-term memory it was more a persuasion on my part to get dad to identify the timescale of this problem.

I have been worrying about this as its been noticeable to me for a number of weeks, but dad doesn’t seem to agree with me.  I on the other hand tried to acknowledge the GPs concerns regarding a timescale of 6 weeks or more, and explained to my dad that if this was correct, then tests would have to be done to identify the severity of this problem.

Having witnessed a near choking incident during Sunday lunch a week earlier, which was very scary at the time, I was concerned that the swallowing problem was becoming increasingly obvious, although dad masks it well by taking a drink during meals, which helps, but I have noticed his eating habits have become slower, taking in only little portions of food.

The GP has given my dad the benefit of the doubt, instructing him (and me) to consider how and when it is affecting dad, and if we identified it as persisting longer than 6 weeks, then it was important for us to inform the GP.  This would enable him to refer dad on for tests, which would look at his throat muscles, which could be becoming weaker, causing these issues.

I must admit, it’s not a nice test, and I don’t relish the idea of my dad having to go through this, but if it does help identify a problem that could become worse, I would rather know sooner than later.

In the meantime the GP is referring my dad back to the ‘Speech & Language Therapy Team’ and a new referral to the ‘Dieticians’ has been advised, and between them they will discuss this further with dad.

I have always been careful what type of food is prepared for dad, as I have noticed a number of foods that he once used to love, now being left on the plate, I did wonder at first if this was just his lack of appetite, but I am now seeing this is more to do with the issue of swallowing. . .

However, we move on to another week, and as long as I can support dad or point him in the right direction for further support I will continue to do so.

Am I doing this as a Daughter or a Carer?  I’m not sure, but either way it’s for the benefit of dads health and wellbeing. . 

Time – It Passes So Quickly

Time – Where has 18 gone?

It’s Sunday 16th October and I am just taking some time out reflecting on the events that I have been writing about on my blog.

As you all know I started writing my blog to record my story of ‘caring for my dad’. . Looking back now, I can’t believe it’s been 18 months since the day my dad suffered his heart attack, and I took on the role of carer on his discharge from hospital.  It has certainly been a roller coaster ride since that day, with so much happening concerning my dads health and my decisions regarding work/career and caring. .

18 months later my story is still unfolding, I know dad will never be the same as he was (especially with the additional Parkinson diagnosis) but life goes on and we are taking things one day at a time. I am usually quite positive about my role in my dads care, but I must admit the last few weeks have found me feeling a little down and overwhelmed by it all.

As I have stated in my blog, I am not a clinical person, all my NHS experiences have come from non-clinics roles, and most of the services I have been able to liaise with over my dads care, has been made possible through the knowledgeI have gained of the services available. That knowledge has been so useful in coordinating my dads care, but it is only my determination that has made this possible (it certainly hasn’t come easy)

I am also dealing with the change in my life and dealing with the lack of interaction with other people on an everyday basis.  I have found it difficult to adapt to not going to work each day, especially after being in a senior management position with the added responsibility of staff, projects, deadlines and delivery timescales.  I have found my role change has had a massive impact on me and it’s only now that I am starting to realise that.  When you have been working in a fast-pased diverse environment like I have in the NHS working to tight deadlines, dealing with budget and resource management, engaging with a range of people internal and external, it’s a massive change to reflect on. . .

I know that next year I will have to start thinking about going back to work to keep my head above water (redundancy money doesn’t last forever) but it will be a difficult decision to make as I will still have to make sure that I have the care and support available for my dad throughout each day, and this may mean looking into alternative options in the care services. .

However, I do have a career to think about and after years of studying I can’t see myself giving it all up long-term. I sometimes think is this selfish of me to want to go back to work, and I hope it doesn’t come across as that!

Today, I am at a loss as to what to do next to support my dad. . The reason behind this is due to ‘follow ups’ or in fact ‘the lack of follow ups’ in some areas of care.

Dad was due to go through a programme of Parkinson’s Therapy throughout August, but after attending 2 sessions the following sessions wer cancelled, and we have still had no further information as to when this programme will commence.  Reading all of the information on the importance of Parkinson’s therapy it became clear to me how important it was to commence this therapy as soon as a diagnosis had been made.  However, as I’ve reported in recent posts, my dad was only referred onto this programme 8 months after diagnosis.

We are now 12 months into his diagnosis with no further appointments, and I am left wondering if this is a failure of the clinical pathways of care for the elderly.  Either way, it looks like I will have to follow this up yet again with the services involved. .