This is a really useful link. . .
— Chris (@Chris_McGowan16) May 20, 2017
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. .
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.
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.
I took some time to stand and stare, stunning colours everywhere.
Autumn winds had done their duty, bathing the park in all its beauty.
I took some time to ease my mind, capturing my thoughts inside.
Nature brings out the best in me, a relaxing positivity.
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.
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. .
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:
- Parkinsons Nurse
- Memory Clinic
- 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.
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. .
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.
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.
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.
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.
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.
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. . .
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. . 💕