Almost Autumn

A quick post today – Almost Autum:

I know we are moving into the Autumn season but we are still enjoying some lovely warm sunny days, with a gentle warm breeze.  If it wasn’t for the the month of October just around the corner, we could be forgiven for thinking we are still in the summer season.

I must admit, I do like the Autumn, with the beautiful colours of nature, wrapping up warm, taking long weekend walks, then home to a cosy fire, and heartwarming meals. The only thing I don’t look forward to is the nights drawing in, it’s darker earlier, and we tend to cram to much in before it goes dark don’t we?  We tend to settle down for the night earlier, and don’t enjoy as much free time in the fresh air as we do in the summer.  In the summer, time is not as important, as the days stretch into late evenings, dinner outside with a glass of wine watching the sun go down.

That leads me onto the pitfalls of Autumn and then winter, if you’re caring for an elderly relative like I am.   It’s a time that I feel my dad doesn’t benefit from, as he likes to stay cosy inside, and that means longer indoors, and not getting the benefit of the lovely sunshine and fresh air.  Although I still try and encourage him to come out with me, as long as he is wrapped up warm, but I can’t plan our times outdoors as much in the Autumn and Winter as the weather is so unpredictable. (I guess that could be said for the Summer months really, especially when you live in the UK as I do)

I’ve felt this year has gone by so quickly, maybe I’ve just had so much on lately that the days have passed by without me even noticing.

It’s lovely to see my dad still doing well, health wise!  He is still a little frail, and has his good days and bad, but he is still keeping active, trying his best to eat well to keep his weight from falling, but this is still difficult as he does not have a great appetite. I encourage him to join me & my family as often as possible, and keep him involved in everything we do.

Dad has come to a bit of a free period now, with no hospital, clinic or GP appointments pending.  He has had all of his follow up clinic appointments for the next few months from the following:

  • Cardiology
  • Neurology
  • Parkinsons Nurse
  • COPD
  • Memory Clinic
  • Pyhsiotherapy
  • Occupational Therapy

The only follow up we are still waiting to hear from is the ‘Speech & Language Therapy Group’ which was cancelled in August.  I really hope this is rearranged soon, as from all accounts this is a much needed therapy for Parkinson’s sufferers, and I tried my best to arrange this over so many months this year.

In the meantime I will make sure my dad has plenty of home grown speech therapy, by keeping him in an active role within our family, keeping him chatting about every day things, asking his advice a numerous subjects, just  making sure he feels he is still a big part of the family, and a much respected head of the family.

 

 

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!

 

 

One Day At A Time – Little Steps

Taking one day at a time:

The ups and downs of an aging relative can be heartbreaking sometimes, especially when they suffer with heart disease and Parkinson’s disease.  They have good days and bad days, but you have to take it one day at a time in order to cope with the inevitable problems that both diseases bring.

One step forward, two steps back:

Over the last few months I have reported on the positive changes I have seen in my dad, these have been little changes, but significant steps.  However, this week it seems we have taken a few steps back, which I am aware is inevitable but, it’s still upsetting to see.

The last few days, dad has been a little bit distant, not as aware or involved as he has been lately.  He has been having his quiet times, not making conversation much, having to be promoted with discussion points, he has also been suffering more from balance issues, and is experiencing a lot of dizziness and tiredness, even though he hasn’t really been doing anything that would bring on the tiredness.

I have been making sure that  he eats well, and drinks plenty of fluids, but sometimes I do wonder if he needs more intervention to help him with his food intake.  It does helps when he joins me and my family for meals as I can then keep an eye on what he eats, which is usually anything I put in front of him, as long as the portions are small.

I do try and encourage him to eat little and often, as this does help to keep his energy levels up.  I do worry that left to his own devices dad would go too long without eating, but I can’t be with him 24hrs a day.

I do make sure that dad eats with us as often as possible, and I know he enjoys this family time, Which is very precious to me. .

I was hoping that an increase in his Parkinson’s medication may have made a difference to the dizziness and the balance issues he has been suffering from, but so far there doesn’t seem to be any change after a month, and we await another appointment with the Parkinson’s specialist in the next few weeks.

One day at a time, that is the only way we can deal with this!

Look forward to the good days, cope with the bad days, but most importantly, be happy dad is still with me, and continues to be the important figurehead of my family. . 💕

 

 

Introduce Yourself – It Makes A Difference To A Patient

The importance of introductions – Staff > Patients

Hello, my name is Chris and I have been blogging about the journey my dad has been on since he suffered a heart attack back in April 2015 and, had a diagnosis of Parkinson’s disease in October 2015.

Today, dad stepped onto another path after being referred to the eye clinic at his local hospital, this was the result of a visit to his opticians for a routine eye test.  The optician suspected he could have the beginning of a cataract and a possible risk of early onset of glaucoma.  Another worry, but something that was suspected and had to be investigated.

My dad is one of the most friendly, respectful and accommodating people you could meet, never complains, and always sees the best in people.  The reason I am highlighting this fact, is due to the way my dad was treated today, which left me quite surprised and a little upset.

We arrived at the clinic reception, dads appointment letter was taken from him and he was told to take a seat, no details were checked, no explanation was given as to what would happen next.  We took a seat and waited to be called into clinic.

When dad was called into the clinic about half an hour later, he was given a routine eye test and asked to take a seat back in the waiting room again, no introductions or an explanation as to what would happen next was given.

We followed the health care assistant into the next waiting room and took a seat, not knowing what we were waiting for, but guessing it was to see the specialist.

After about an hour of waiting, one of the nursing assistants turned on a TV screen showing the waiting times/delays for each specialist, having identified my dads specialists name, I asked if the hour wait was from the time we arrived, or, the time the screen was activated for all patients in the waiting room to see (which was then 11am) I was told it was from the time of dads appointment, which was 10am. . .

The reason I was asking, I was aware that dad had been sitting for an hour therefore, he would be a little off-balanced when he stood up, and I was worried if I left him to get a coffee, as was suggested, he may get called into clinic without me being there to assist him.  After speaking to a member of staff, I was informed that if he got called into clinic the nursing assistant would make sure he was ok if I hadn’t returned by this time.

After this discussion and a chat with my dad I decided to go and get him a coffee from the coffee shop on the next floor (reluctant to leave him, but aware he needed some refreshments) Thankfully I returned just in time, as I passed the coffe to my dad, his name was called and we had to go into see the specialist.

Dad had no time to have his drink, but at least he was not waiting any longer to see the specialist.  I was trying to explain to the nursing assistant that dad needed this drink, but we were ushered into the consulting room without any further discussion and dad was directed to the examination chair.

The reason I was a little upset and I must say surprised, was at no point did anyone introduce themselves, not one member of staff said “Hello George, my name is . . .” something as simple as a name, how difficult is that?  I thought it was really disrespectful to the patient, but also showed lack continuity on behalf of the NHS.

If you have been reading my blog, you will know that I have 28yrs NHS experience, having worked in a number of non-clinical roles in two NHS Trusts, in front-line services and most recently corporate services.  I am aware of the importance of introducing yourself and being respectful of the patient, especially when they are feeling vulnerable.

I have been following a very important campaign for the last year, that has been widespread across the NHS, promoted across the social network platform which is called:

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This was started by Dr Kate Granger (Twitter – @GrangerKate) and has NHS Trusts across the country joining in and taking up this challenge.

More details can be found on the following link:

http://nhsemployers.org/campaigns/hello-my-name-is

Introducing yourself to a patient is a personal and respectful act of acknowledgement, putting the patient at ease, it is so easy to say, hello my name is. . and should be the first thing any member of staff interacting with a patient should say!

The test itself involved putting drops into dads eyes, and as anyone knows, the first thing you do when anything goes into your eyes, you blink continuously! While this was happening my dad was being told to keep his eyes open so the specialist could look into his eyes, but this was impossible for dad to do as the drops were irritating his eyes therefore, making him blink.

With the disappearance of the nursing assistant, I was ‘told’ to help, which I found very disturbing as I could see my dad struggling.  I asked if he could have a minute to relax, but was told he had to continue while the drops were in and the test was done.  It was at this point the nursing assistant came back into the room and I was directed out of the way as she took over, I watched as she tried to hold dads head against the eye machine to get the test done.

I found the whole experience a little traumatic to watch as I could see dad was struggling, and I didn’t feel that either of them were being considerate to his condition, or putting him at ease.  I was so relieved once it was over for my dad.

Once the test was over, the specialist discussed the results, but directed them to me and not my dad.  I then tried to bring my dad into the discussion asking him if he understood what was being said, and if there was anything he wanted explaining again.

The good news was that there was no glaucoma at present, but the test would have to be repeated in another 2/3 months.  Nothing was mentioned about possible cataracts, as stated on the referral by the opticians therefore, I’m hoping this is not an issue to be identified at a later date.

I just hope that dad will be treated a little more compassionately at his next appointment, and he won’t be left bruised as he has been by this procedure.

I have always found it hard to listen to criticism about the NHS having worked in the organisation for so long, and also experiencing the other side, as a patient and a relative of a number of patients that have been treated by the NHS.  However, there are times, like today, when I can understand the criticism. . .

Embrace The Knowledge Of Our Aging Relatives

If only everyone took the time to listen:

Browsing through Twitter this evening, I came across a tweet posted by @IAmJohnSparks

I couldn’t resist sharing, as it made me think of all the times I have regarded my dad as the most influential person in my life, the one who I go to foe advice, the source of knowledge that was second to none in my eyes.

Please read the tweet, take it in, think about the words, and if possible respond to let me know who, in your eyes is that person and what is it that you have learned from them.

I can recall a conversation I had with my son’s teacher at one of his parents evenings, we were discussing the usual, work, attitude, progress etc. . Then, the teacher asked me about my dad, which I thought was a bit of a strange question, considering I hadn’t even mentioned him.  However, it was then that I found out that anything that was discussed in certain lessons such as ‘History’ Geography’ that my son had doubts about, or found hard to believe, apparently he would inform the teacher that he would go and ask his granddad!

This, I believe happened a number of times with different teachers, and my son would go back to those teachers to let them know they were right, as his granddad had verified the information.  I found this to be really funny at the time, but I also felt proud that my son had such a respect for his granddad and the knowledge he held.

He still seeks him  out now for clarification on certain things.

I would love to hear some feedback, and maybe we could build on this to promote the knowledge and learning we should be gaining from our elderly relatives and the aging population.

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 🙂

 

 

Speech and Language Therapy

Speech and Language Therapy Services:

Speech and language therapists (SLTs) are allied health professionals. They work closely with parents, carers and other professionals, such as teachers, nurses, occupational therapists and doctors. There are around 14,000 practising SLTs in the UK working in a wide variety of settings.

More details can be found on the following link:

http://www.rcslt.org/governments/docs/what_is_slt_factsheet

After successfully completing a programme of exercise provided by the Physiotherapy/Occupational Therapy Team, my dad has now been referred to the Speech and Language Therapy Team.

Since my dads heart attack and diagnosis of Parkinson’s, he noticed a marked deterioration in his voice and speech, which has been worrying.  At first I thought it was just part of his recovery from the heart attack, which left him very weak and fragile, but as his health improved with medication and therapy, his speech was still noticeably impaired.

Having found out more about Parkinson’s I now understand this is a symptom of the disease, as is the difficulties with swallowing and can be helped with therapy.

The Speech and Language Therapy Team assess, diagnose and treat communication, voice and swallowing impairments enabling patients to achieve their maximum potential.

The team provide a service to patients in hospital and in the community, visiting patients in their own homes (as in my dads case)

Further details of this service can be found on the following link:

http://www.5boroughspartnership.nhs.uk/speech-therapy-knowsley/

The Initial Assessment:

Dad’s first assessment took place in his own home with the speech and language therapist and consisted of a number of tasks for him to take part in.  First of all he was asked to do some deep breathing tasks to relax him before he was instructed to shout as loud as he could (dad found this a bit strange as it had been so long since he even had a reason to shout and, to be honest, I can’t remember the last time I heard my dad shout) but I believe this gave him some reassurance that his voice was in there somewhere 🙂

The therapist will continue to do some one to one work with him over the next few weeks before referring him to a therapy group which will continue with his rehabilitation.

My dad has been a member of the Irish Guards Choir for over 10 years and loved taking part in the fundraising events, concerts, weddings etc. . .

But after his heart attack he has only managed to attend a few practice nights, partly due to his slow recovery and trying to rebuild his confidence, but mostly due to his worry on the change in his voice and speech.

The choir has been a big part of his life since he lost my mum 10 years ago and I hope one day to see him join them once again. . .

 

Older People’s Health Needs – No Response!

Are community services meeting older people’s health needs? Live discussion As featured by Guardian Healthcare

http://www.theguardian.com/healthcare-network/2016/apr/14/are-community-services-meeting-older-peoples-health-needs-live-discussion

I would have liked to comment but didn’t get a response. . .I tried with my tweet!