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.

 

 

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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. . .