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 ❤️💙

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.

 

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. .

If Parkinson’s Speech Therapy is important, why is it delayed?

In recent posts I have made a lot of references to the importance of ‘Speech and Language Therapy’ especially when Parkinson’s Disease is diagnosed.  My last post on this subject explained the difficulties in accessing this much needed service, and how my dads therapy group had been cancelled.

The following link provides details of the importance of speech and language therapy for Parkinson’s patients. . 

https://www.parkinsons.org.uk/content/speech-and-language-therapy

It’s been almost a year now since dad’s diagnosis and he has yet to complete a group therapy session.  In the first one to one visit at home, he was left with an action plan, excercises for his breathing etc. . and he was following these excercises, but it’s difficult to motivate him into doing these every day, especially when nobody is following them up or assessing his progress.

I have been doing my best to help motivate my dad, but I am at a loss as to how much he needs to do every day.  Additional issues come into this, such as dads memory loss, he says he has done some excercises, but unless I sit and watch him, I am not sure if he actually remembers following the instructions, or actually doing the excercises.

Therefore, I am left to follow the services up again and find out when the therapy group will start again.  I am wondering why, when pathways of care are clearly mapped out, who is responsible for making sure patients don’t slip through the net?

Why is it, that the patient, or carer (as I am for my dad) has to follow these important services up.

Sometimes I find myself wondering, is it an age thing?

Will an 83 year old Parkinson’ patient benefit from this therapy?

I hope it’s not the issue, I would like my dad to access as much support as there is available to him, especially if it will help his condition, and give him a better quality of life.

I hope we have a better outcome in the next few weeks.

So Much For Therapy!

Speech & Language Therapy Group:

Recalling a post I wrote on the above subject on the 29th April, I was hoping to have something positive to write about it by now.  However four months have passed and I regret to say, I am very disappointed on the outcome of this much needed therapy, due to waiting times and the inevitable cancellations, due to staff shortage and staff sickness.

In April, my dad had been assessed by the Speech & Language Therapy Team, and they had initially carried out some one-to-one therapy sessions with him at home, although the sessions were three weeks apart, and he was left a programme of tasks to do in his own time (which did need prompting, due to dads little memory lapses) they at least started to do some initial work with him.

Once the one-to one work sessions had been completed, dad was told he would be attending his first Speech & Language Therapy Group in August.  This would involve an initial assessment in week one, followed by a further three weeks attending the two hour therapy sessions each Friday throughout August.  I was really happy for him to be starting on this programme, especially when I had read so many positive reports on the importance of therapy for people with Parkinson’s disease.

Week One:

I took dad for his initial assessment, we met with the therapist who would be delivering the programme, she discussed the things dad would be expected to take part in, and he was happy and looking forward to the sessions.

Week Two:

The following week I dropped dad of at his session, and returned two hours later.  It was nice to see him chatting to other people who had attended the therapy group, as I arrived to pick him up.  During our journey home, I asked my dad what he had done, how he had interacted with the group, what had been interesting, what had he got out of it etc. . However to my dismay, dad said he had not really done anything, apparently the therapist who was supposed to be delivering the session was off sick, and the person who had stood in at short notice had just discussed the programme, and spent most of the session talking to the group.

Dad didn’t seem to have much input or interaction with the group, he didn’t seem to have any information to take away with him, or any programme of excercises to do prior to his next session, which was disappointing.

Week Three:

The following week as we looked forward to the next session, dad received a phone call informing him that the therapy group had been cancelled due to staff sickness, and there was nobody to stand in and take the group through the next session.

Week Four:

Having taken my dad on holiday with my family for a week, I made sure that we would return early on the Friday, so dad could atten his therapy group.  Unfortunately when we arrived at the venue, there didn’t seem to be anybody waiting for the session, and when I asked the receptionist if the group was still going ahead I was informed that all she could tell me was the room was booked for the session, and that she had no other information.  After waiting for 10/15 minutes, the receptionist decided to make a phone call to see if there had been a cancellation (which was very helpful of her) unfortunately it was then that we were informed the group had been cancelled!

I was informed that phone calls had been made prior to the cancellation, but unfortunately with us arriving straight from holiday we hadn’t had time to call home and check any messages.  I was assured that the Speech & Language Team would be in touch with us, and apparently next group sessions would be in October?

When we returned home, I checked dads answer machine, but there were no messages, and we have yet to receive a phone call or a letter to inform us of any further appointments with the therapy group.

I can understand that staff sickness cannot be helped, I can also understand that staffing levels can be low at certain times in the year, such as peak summer holiday periods, but what I can’t understand is the lack of communication to the patient and the patients family.

Everything I have researched regarding Parkinson’s since my dad was diagnosed, points to the importance of therapy sessions, therapy groups, physiotherapy, excercise etc. . .as well as the importance of interacting with these groups as early as possible.  And yet it’s almost a year since my dad was diagnosed, and he is still waiting to complete a group therapy session.

I do hope we have some communication soon 🤔

However, looking on the bright side of life.

We did have a lovely break away together in Wales, we were lucky to have beautiful sunshine 🌞 visited some lovely coastal areas, enjoyed the fresh air, and most important – Family time.

All of which I will recall in my next post. . .

 

A Vicious Circle

Thinking as always:

It always amazes me, how your mind can just wonder off without you even taking it to the place where you’re unconscious thoughts are busy trying to make sense of things.  And I have certainly spent a lot of time recently, trying to make sense of things!

I recently addressed my thoughts on the events that have filled my life for the past 15 months, all related to caring for my dad, as you know!

I’ve been giving a lot of thought to the recovery process and how I have been encouraging my dad to eat more, eat little and often, and drink plenty of fluids. Up to now, this has been working and the additional information I always provide on a white board in my dads kitchen has given him prompts and reminders.

This strategy had potential and reasoning, but somehow it doesn’t seem to be working now due to a number of things.

Why?

  1. My dad suffers from memory loss (does he just forget to eat)
  2. My dad has little or, at times, no appetite (the reason I make sure he eats with me at every opportunity)
  3. My dad has no sense of smell (impossible to prompt interest when cooking food for him)
  4. My dad has never been a big eater (has always ate small portions, and ate when he was hungry)
  5. My dad is on multiple doses of medication (this alone can result in loss of appetite, taste changes etc. . )
  6. My dad has Parkinson’s disease (therefore swallowing can be an issue as the disease progresses)

Therefore while I am encouraging my dad to eat little and often, I am now looking at the possibility that swallowing may have become an issue, although dad isn’t telling me this.

I have noticed him reach for his glass of water at mealtimes more often, and ive noticed he has been coughing in short spells when eating, even showing a choking reflux on rare occasions.

I have had to provide foods that are easy for him to swallow, while still considering the vitamins he needs.  I’ve come to realise the many symptoms of Parkinson’s are different for each person, suffering from different episodes that may come along at anytime, and these may now be showing in my dads condition.

So, after considering all of the food options I introduced 12 months ago, while my dad recovered from his heart attack, and the addition of energy drinks (as recommended by the health professionals) I now find myself taking a few steps back and looking at this as the next option again. . Hence the term I have used for this post

The definition of ‘A Vicious Circle:

” A situation in which the apparent solution of one problem in a chain of circumstances creates a new problem and increases the difficulty of solving the original problem”

Interesting definition!

I don’t want to see my dad lose anymore weight, he has always been a slim man, but losing weight over the last year while recovering has shown on him.

I think this time it may be worth me speaking to the experts, the dietitians to get some help and advice with the next stage of this journey.

Just another small step to take, and one I am sure we can deal with!

 

 

Positive Steps – Looking Forward

Positive Steps:

I am very happy to report that my dad has definately turned a corner on his journey of recovery.

At the end of April 2015 when my dad had his heart attack, it really knocked him sideways and changed him from an independent, outgoing, confident, happy go lucky man, into a frail and dependent individual.

As a daughter I found this sudden change very worrying and I was left thinking about the possibility that my dad may not recover.   Along with the diagnosis of Parkinson’s disease 6 months later, this has been a very worrying and exhausting year.

What a difference a year makes:

One year on things are finally looking up, we are still on a continuing journey of recovery with every day that passes, but I am finally starting to see my dad slowly recovering, he is showing more of an interest in the simple things he always enjoyed, such as his garden.  It may be the lovely warm and sunny weather we have been enjoying lately which has given my dad some inspiration to get out there and start doing little bits in his garden, but whatever it is I am so happy to see my old dad in there somewhere. . .

He is taking more of an interest in his wellbeing, he is not suffering from the breathlessness that stopped him in his tracks this time last year. His appetite has increased, his weight has been maintained, he is smiling more and making conversation so much more than he has done in the last year.  His mischievous side is rearing its head again, much to the amusement of his grandchildren and great granddaughters.

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It is so nice to see his confidence and energy coming back and seeing him doing more than he was, although he still suffers with dizziness and balance issues due to the Parkinson’s, this is something that may become easier with an increase in his medication. Time will tell!

Taking the timeout from my career to look after my dad was not an easy decision, becoming his carer was never a role I would have envisaged at all, but at the time I couldn’t really see an alternative.

I am happy to have been there for my dad, I know I have helped him in so many ways and he has felt secure in the knowledge that I’m there for him always.  I’ve been pointing him in the right direction to assist in his recovery, from his cardiac therapy group to his follow up hospital appointments, advising him on the services that were available for him, and advising him of the potential benefits each of these services will provide for him.  All provided by the NHS, in particular Community Health Services.

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I would certainly advise anyone in this position to take advantage of the services provided by the community health teams.  They have been influential in the rehabilitation process my dad has been through, and is still involved in today.

Therapy Sessions – Speech & Language

Dad is now working with the speech & language therapist, and fter his initial assessment he is now following a plan of action which is assisting him in his efforts to regain his vocal range, which has been affected by the heart attack and Parkinson’s.  He looks forward to these sessions, as they have given him a goal to aim for and that is to regain his singing voice (prior to his illness he was a member of the Irish Guards Choir for over 10 years)

It would be wonderful to see my dad singing again one day, and now I can see his efforts are starting to pay off. .

Just the other day, without any prompting, my dad broke out into song, which was a lovely surprise, it’s just that we were walking into a department store at the time! Very entertaining 🙂

 

 

The Importance Of Signposting For Parkinson’s Disease

Parkinson’s – Why ‘Signposting’ is so important

In recent posts I have discussed the importance of ‘Signposting’ and here I am bringing the subject up again.

I still don’t feel enough is being done to signpost patients to the services that are available for certain health conditions.

I have experienced the frustration of being passed from one service to another while trying to identify the correct care pathway for my dad.  This has been the case after his recent diagnosis of ‘Parkinson’s’

WHAT IS PARKINSON’S?

Parkinson’s is a progressive neurological condition.

People with Parkinson’s don’t have enough of a chemical called dopamine because some nerve cells in their brain have died. Without dopamine people can find that their movements become slower so it takes longer to do things.

The main symptoms of Parkinson’s are tremor, rigidity and slowness of movement.

Similar symptoms can easily be associated with the onset of ‘old age’ and this may have been one of the reasons my dad had not known he had Parkinson’s, we certainly hadn’t considered this as an option.  It could also be the reason his GP had not discussed this as a possible cause of dads symptoms, despite my dad having regular check-ups for other health issues.

Should more be done to test for this condition when there are a number of obvious symptoms?

The diagnosis of ‘Parkinson’s was unexpected and another stepping stone on the pathway of care.  Initially after diagnosis we were directed back to the GP for medication, it was during this consultation an appointment with a ‘Parkinson’s Nurse Specialist’ was advised, but no other option was discussed at this point.

Working in the NHS I have been able to discuss my dad’s ongoing health issues with some of my colleagues, they have provided support and advice on the services that my dad should have been referred to, such as the Parkinson’s therapy group.  

I was however, quite surprised to hear that the referral would have to come from the GP! 

Why was this not mentioned by the GP?

Therefore armed with this information, I contacted the GP surgery and discussed this with the GP receptionist, who assured me they would pass on the information to the GP.

After a couple of weeks, no word had been received on this referral, so I called the surgery again, this time I was informed that my dad already had an appointment with the Parkinson’s Nurse Specialist and no other referral was required at this time.

I found this quite worrying as I had been informed of the importance of early referral for therapy, once a diagnosis of Parkinson’s had been made.

PATHWAY SO FAR:

Neurologist: Initial diagnosis

GP: Prescribed Medication – Referral to Parkinson’s Nurse Specialist.

Parkinson’s Nurse Specialist: Assessment 

This assessment was not as informative as I expected, it was more of an update on my dad’s condition with an explanation of his previous medical history. The nurse specialist did not have my details on my dad or his recent medical history, no patient notes or information.

The meeting did however, give us reassurance of the support that was available from the nurse specialist, but when I asked about the therapy group and informed her of what I had been told, they didn’t seem to know anything about it.  At this point I gave them the name and contact details of the practitioner who had provided me with this information, and after further discussion I was assured they would complete the report for the GP and send a copy to the practitioner to pursue this further.

I really do feel very frustrated by the lack of information shared throughout services within the NHS, especially when so much emphasis is put on identifying the correct care pathways.  I really feel for the patients who don’t have someone to help and advise them of the support that is available for them. . . 

My next post will report on the positive outcome from further discussions regarding the therapy services, and how things have moved on for my dad.