Dad’s New Home -Moving Day

Time for a new chapter in my Dad’s life –¬†It’s been an emotional week ūüė•

May 2018 – The end of May soon came around, and if you have read my last post, you will know that my dad is moving into a lovely new apartment (no more stairs) in a new extra-care development a short 5 minute drive away from his current home.

Its been a busy few weeks and I must admit it’s been a really¬†emotional time for me, packing and sorting all of my dad’s home. ¬†This is the last home my dad shared with my lovely mum (who passed away 13yrs ago) and even though my mum and dad had only moved into this house less than 2 years before mum died, it was still packed with so many happy memories of my mum, so you can imagine how difficult it’s been. ¬†How do you pack away a lifetime of memories while trying to stay positive and convince your dad that this is the right move for him? I still wonder if it was. ¬†

I didn’t want to pack things away to early as I knew this would confuse dad, but I also didn’t want to leave everything to the last few days as this may cause dad some upset if he was rushed. ¬†It was hard to understand just how much my dad understood, and I had to tread carefully because of his dementia.

These words are from the following website: thedawnmethod.com

The Dawn Method – Living Happily with Dementia

 

 

I made sure we had plenty of discussions with my dad about the move, I encouraged my dad to read the documents and look at the photos of his new apartment. ¬†Some days he was happy about the move, even counting himself ‘lucky’ that he had been offered the apartment. ¬†However, there were days when he didn’t seem to understand it was his new home, and that he would soon be moving out, this worried me, dad would say he wasn’t sure, he would make his mind up when he saw it, but he he had already viewed the apartment and signed the acceptance form, this was a move that was finalised.

Dad couldn’t remember his initial interest in a new property, it was over 3 years since he first looked into this and so much had happened with his health and his memory loss. ¬†I had kept following it up, keeping updated on the development, unfortunately the build hit long delays and this delay resulted in a long wait from the initial idea of move around late 2016/17 which would have been the best time for my dad, as he was still very much aware of what was planned. ¬†When the¬†actual date for moving was revealed for 2018 dad’s health deteriated and the memory loss increased. ¬†

The good news is that when I took my dad to look around the new development he was very positive about the layout,  it looked very modern but had retained a lot of the old fixtures which had been renovated to a very high standard, there was plenty of history retained within the building.

June 2018 – A few days before the move, the removal company dropped off packing boxes and I soon got to work on packing the little things, like ornaments, pictures, photos, clothes and emptying the wardrobes of a lot of clothes dad hadn’t really wore in a few years (due to weight loss) I left all his everyday clothes and personal items to the last, this kept things familiar, I didn’t want dad to feel as if he had nothing familiar around him. ¬†Dad soon started to help me a little with packing, he couldn’t do too much as he was quite frail and I didnt want to over burden him. ¬†It was hard to know how much to expect him to do without trying to exclude him from packing his own things.

I had discussed the idea of downsizing and looking at what furniture would fit comfortable in the apartment (it was hard to move a two bedroom, two floor large house contents into a one bedroom one floor small apartment and try and keep it as familiar as possible so as not to confuse dad.

Moving Dad 6th June 2018

what an emotional day for me, I was trying not to think of this being the last day my dad would be in his home, I just tried to stay positive as I knew this was the best option for my dad. ¬†The good thing was, we were not letting the house go, we hadn’t sold it, and even though I knew the idea of dad returning to his house wasn’t an option, it was still his and we discussed the idea of keeping it in the family. ¬†My Son was going to move in short-term with his family and look after the house, dad liked this idea.l

Everything was ready for the move, boxes were packed and labelled for each room in the apartment, furniture labelled and ready to be moved.  The new apartment had been prepared for dad, with the new carpets and blinds I had helped him to select. It was going to be a busy day!

The removal vans arrived – It was all systems go – Time to move on dad ūüėė

I will share more pictures and some history of the new development, known as:

The Watchfactory

 

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Moving Home – A Positive Development

The Spring brought good news РSomething Dad has been waiting on for three years РThe offer of a new apartment 

Back in 2014 my dad had been considering moving to a smaller place, maybe a ground floor apartment. He had¬†been viewing a few new developments during that time, but I didn’t think he really wanted to leave his lovely home as he just loved being in his garden, which was his pride and joy.

However, two years later when my dad had a heart attack and became very frail, we talked about the idea of a possible move, thinking this would be the time he would have to consider this as an option.  Dad was very poorly and throughout his recovery I always worried about the stairs in his home, which he now struggled with.

It wasn’t too long before I heard about a new development which had been under construction for a number of months in our local town, not far from my dads current home. ¬†It was to be an extra-care development with a number of two bedroom bungalows as well as one and two bedroom apartments. ¬†The site undergoing construction was that of an old watch factory which was being d developed by the local housing trust for the elderly in our home town. ¬†Names were being taken by residents within the borough who had an interest in applying for a property, and it wasn’t long before my dad and I were sitting in the local council office going through the details of the development, and my dad made the decision to file his application for a property.

May 2015 – Dad was on the list for a property, this was something really positive to look forward to and dad was certainly happy about it. ¬†He was looking forward to moving into a home that didn’t have stairs. ¬†However, two years later the wait went on, there was delays in the development which was disappointing. ¬†By this time dads health had ¬†become worse and, as you know from reading my blog, my dad was diagnosed with Parkinson’s related dementia. ¬†He had suffered from another fall and hospital stay, despite everything that was in place to protect him. ¬†Dads short-term memory was getting worse and I was becoming more concerned about leaving him on his own at times.

March 2018 РGood News РDad receives a letter informing him that he has been selected for an apartment in the new extra-care development, dad seemed happy about it, but the memory loss effected his ability to plan ahead or look forward to the move as he would forget what we had discussed about his new place.  I would keep reminding him about it, making sure dad had time to take it all in, I knew he would forget our discussions so I would leave little notes about it and pictures of the new development for him to read.  I would also drive dad past the site regularly and show him where he would soon be moving to.  I must admit, I was worried how the change would impact on my dad, despite his the interest he showed, I was very much aware that he may not be taking all this in.

May 2018 Dad is invited to view his new apartment in the new development – The site is known as ‘The Watchfactory’ and has a history going back to the 1800s when watches were made here in Prescot:¬†

The link below takes you on a journey back in time to see the history of the Watchfactory:

https://www.liverpoolecho.co.uk/news/prescot-watch-factory-development-100-year-old-9429628

The much awaited day arrived, I was taking my dad to view his new apartment, we were told we could take measurements at this time for carpets and blinds etc. . and discuss any concerns we had regarding the property.  This was also the day that dad would have to agree to accept his property ( a lot to take in on an initial visit)

Here is a photo of me and my dad arriving at the new development in May 2018

On the far right of this photo you can see a foundation stone which was laid at the site of the original building of the Prescot Watchfactory in 1889 by Lady Margaret Cecil, apparently this stone now sits close to the original place were it was laid all those years ago.  What a great piece of history retained here in Prescot.

In my next post I will tell you more about dads ‘moving day’ and the difficulties we, as a family have faced, moving dad from the last home he shared with my lovely mum (who passed away 13 years ago) It certainly hasn’t been an easy move, its been very traumatic and upsetting, but I know it’s been the best option for my dad.

I will also tell you a little bit more about the history of the Watchfactory and of Lady Margaret Cecil.

Chris x

Home Care – Positives & Negatives

It’s good to be back, finding time to update my blog again. ¬†I still can’t believe I’ve only found the time to write one blog post in 11 months, I guess it shows just how busy life has been with caring for my Dad. .¬†

In my last post I discussed the positive’s of my ‘Carer Assessment’ and the steps I’d taken to put a ‘Care Package’ in place for my Dad. ¬†However, it was not easy sailing, it took a long time to get the right amount of support for my dad without taking away some of his independence. ¬†It was also quite difficult for me to rely on others to help care for my Dad, I had just spent over 2yrs taking responsibility for all aspects of his care, medication, hospital appointments etc. . This was a learning curve in ‘Trust’ and ‘Sharing’ in others i.e Experienced Carers (or so I thought)

The Care Plan РInitial Meeting with Care Providor 

After an initial meeting with the ‘Care Providor’ a ‘Care Plan’ was created and signed off, this listed the care my dad would receive, which¬†including help with personal care, washing & dressing, medication & nutrition. ¬†It was noted during the meeting that Dad had almost stopped making himself anything to eat, other than tea & toast and that I had taken on all of the meal preparation over the last few months ( a requirement that would be now be met by the Carers)

Care Package:

September 2017 РThe care package was (as always) discussed with my Dad, he agreed with the plan, which was put into action the following week.  I agreed to take a step back during this time to see how the care package was progressing, I would still be there in between the carer visits to check on my Dad, and I would carry on doing all of his cleaning, washing, shopping & taking care of his garden.  I would also be making sure everything agreed was taking place, and documented in the care plan file.  The care plan file listed dads needs, and each visit was documented with the time the carer arrived, what had taken place, and the time they had left.  This provided me with the information I needed to make sure the appropriate care was being given, and I could also see what dad had been eating & drinking (or what he had refused to eat on some visits)

My decision to put the care package in place for my dad, came following a fall and a hospital stay where I witnessed a real change in my dad, he became very confused and disorientated and this caused me some concern.  I also felt it was something I had to consider after my carer assessment, due to the increased pressure I felt I was under caring for my dad on my own.

Positives:

There was a lot of positives to report, although it was difficult knowing other people were letting themselves into my dads house (a key safe was installed which contained a key for the Carers) I had to put my trust in them. ¬†I was assured that professional experienced Carers would be involved in my dads care, they would be understanding of his needs and be competent in caring for the elderly. (I had requested that dads Carers were more mature as I didn’t think young Carers would be accepted by my dad especially around his personal care, washing & dressing, the social worker and the care manager had both agreed to this request) Dad is a very proud man and he wouldn’t take kindly to a young carer helping him wash or dress, he would feel as if they had better things to do and I knew this would be a problem (dad has a granddaughter in her 30s and he certainly wouldnt allow her to help him wash/dress) I wanted to make sure dads dignity would be considered at all times.

The first few visits went well, Carers were arriving on time and following the care plan, dad was happy with the care he was getting and the help with meal preparation and medication. Dad seemed happy and I found my visits more relaxed as I could be the ‘daughter’ again. ¬†I could read the care file to check on dads food intake and the times of arrival. ¬†I found the kitchen to be tidy, dishes washed, dad looking clean and tidy, so all good to start with.

There had been a number of different Carers at first, even though we discussed continuity of care with the care services, but I let this go at first as I wanted to see how everything would become established over the next few weeks.

Eventually it seemed that continuity had been established and Dad had been assigned three lovely mature Carers, who I met in the early days of his care package, and I was very happy with them.  They soon got used to my dads needs, they gained his trust and mine and they stayed in touch with me, which was really good of them.  Dad soon began to look forward to each one of them calling, he built up a great rapport with them as they took time to sit and chat with him, getting to know him and his life experiences.  I even started to call in when they were there some days and it was lovely to see dads sense of humour returning, they brought out his cheeky side again.

The months that followed brought a little sense of relief to me, the care package was going well, dad seemed to enjoy the Carers coming in, he soon started to offer them cups of tea when they arrived, even though they insisted that’s what they were her to do for him! That was dads politeness coming through and that had to be good.

It wasn’t long before they got used to my dad, they soon realised he would have days when he would say he wasnt hungry, or that he’d already ate something, but they knew this wasn’t right and they would liaise with me, they would also start to encourage dad with a choice of breakfast, lunch or dinner, or just make him something nice and invite him to the table, where he would eat his meals, they would sit with him and have a cup of tea with him.

Some mornings dad would already be up and about before the carer arrived and although that was good for his own independence, it was worrying as dad was very vulnerable in the morning due to his balance and lack of coordination. Some days he would wash and shave, but most days he needed help or prompting with this.

It wasn’t long before dad had days when he would¬†insist that he could stay in bed, and the carer would call me to let me know, on these occasions I would go and encourage him to get up, help him wash and dress and prepare breakfast. ¬†However, due to¬†the patience of the carers, they soon started to encourage dad to get out of bed while they were there. ¬†They had a lovely way of talking to¬†him, they would also remind him that it was safer for them to help him (I could see that dads independent streak could come out still, and you had to respect that)

By the end of 2017 I noticed that Dads short-term memory had started to decline more, he couldn’t remember if anyone had been some days, and he would sometimes say that he had cooked, or washed up as nobody had been near. ¬†This, I knew was not true, but I never contradicted dad, what was the point of that? ¬†I would just read the care file to make sure. . .

Negatives:

I don’t really want to focus on the negatives of the care package because I was always able to rectify any issues by speaking with the care services. ¬†However, there were times when I did despair and wondered how anyone going into a vulnerable elderly persons home and leaving, knowing they had not given the care required, could be ignored. ¬†My dad was lucky, he had a voice in me, I was also well informed of the services and the expectations of good and bad care! I had worked in the NHS for 28yrs and was familiar with the good and sometimes poor care! My dad was vulnerable and under no circumstances would my he become a victim of bad care, not on my watch.

Although we had established a continuity of care with the two to three Carers, there were times they had days off, holidays, sick leave etc. . and other Carers had taken on dads calls. ¬†This is when numerous instances of concern crept in, most of the time it I felt it was due to the lack of experience and knowledge of the elderly and their needs as well as the general complacency of young Carers. ¬†I am, by no means making any statement that ‘young Carers’ are not carrying out their expected care duties with compassion, as I have come across a number of young Carers who do a great job under immense pressure. ¬†However, a certain person who was assigned to my dad on a few occasions left me with quite a few reasons to be¬†concerned, all of which was reported to the care agency. ¬†Here are just some of the issues addressed during this time:

  • Late morning arrivals – Dad already up, dressed, trying to make his breakfast
  • Lunch/Dinner – Meals not made as dad had said he’d already eaten
  • Meals left out – Not observed eating so left to go cold (not eaten)
  • Missed calls – Dad had been forgotten on some occasions.
  • Meds forgotten to be administered
  • Dad left in stained clothing (food spills)
  • Times not being adhered too (quick in & out calls and not the half hour as agreed)

All of the above happened over a number of months, and each time I raised concerns with the care service, they always apologised and agreed they would speak with the carer, unfortunately it still happened.

I was surprised to be told that the care service had a shortage of Carers in my dads area, and that other Carers had to cover from a different area, hence the late calls some days, but this was not good practice surely, and was not discussed in any meeting with the care services prior to the care plan and times of visits being agreed!

Having had several meetings with dad’s social worker and the care services, it was always agreed that dads care plan could be met. ¬†After all this was a paid service, it wasn’t free, the cost was coming out of my dads pocket, and we should not have had any part of his care compromised due to staff shortages.

These services are bid for, they have to show they can provide the service prior to any funding being commissioned.  Therefore, to be told by the care providor that shortages led to my dads care issues seemed very inappropriate.

I was eventually left with no option but to request this person be removed from attending my dads home.

Eventually things got better, dad gained the support and care he required, as agreed in his care plan. ¬†The two Carers he was lucky to have, provided the best care and support throughout each day, they thought so much about my dad and treated him with respect at all times. ¬†They took the time to talk with him, laugh with him and most of all became friends with him and myself. They met my son & daughter and my grandchildren, they talked about their families too, it was really nice to get to know these two lovely ladies who cared about my dad, and were generally concerned if he wasn’t his usual self.

I made sure I praised their commitment, support and respect, all of which I passed onto the care service and social worker during review meetings.

Things were going well and I started to feel less guilty about considering the care package. . . Both, Dad and I had made two lovely friends, and over the next few months everything was going well and we were soon into the spring of 2018.

A Positive Change in Circumstances (Life after a Carer’s assessment)

It’s good to be back, it’s been so long since I found the time to sit down and update my blog.

In my last post I promised to report back following my ‘Carer’s Assessment’ so apologies it has taken me so long . ¬†It’s almost 10 months since I wrote that post. ¬†So much has happened during that time with my dad’s health and wellbeing, which has been, and still is my main priority.

Carer’s Assessment¬†

Having a Carer’s assessment was the best thing for me, I found it very relaxed and centred on me and not my dad. . All of my time has been taken up with my dads health, how he was feeling, what he needed and how I could support him. ¬†I never once thought about myself, or how this change in circumstances was impacting on my general health and wellbeing.

My Carer’s assessment was carried out by an experienced social worker

The social worker wanted to know about my work and career, my family, my feelings and above all else she wanted to know how she could support me. . .I realised this was the first time I had talked to anyone about the pressure I had been under, I had kept everything to myself and had just got on with what I needed to do.

To cut a long story short, the outcome was the realisation that I needed support to look after my dad, the social worker made me realise I couldn’t carry on doing this on my own therefore, I agreed for a meeting to take place with my dad to discuss the need for a¬†‘Care Package’ to be put in place.

Discussing the Care Package with Dad:

A few weeks later, the meeting took place, and I made sure that my dad understood the options available and after much discussion regarding his needs, he agreed to the support that would come from professional Carer’s. ¬†We agreed on a 5 day package Monday – Friday consisting of 3 half hour calls a day (I would take care of the weekends as dad spent most of them at my home)

Morning – Making sure my dad was up, washed, dressed and had breakfast and prompt medication.

Lunchtime – Making sure dad had prepared or needed lunch preparing and to prompt medication

Dinner – Making sure dad had prepared or needed dinner preparing

I would still be visiting everyday in between these visits, and taking care of his medication before bed. I would still continue to take him for all his hospital appointments, pension, shopping.  I would still be doing all his washing and cleaning, and taking care of his monthly bills and finances (as dad had stopped taking care of all of this)

The Care Package:

A few weeks later the care package commenced, and although I was very apprehensive about it, I soon realised how the support of professional Carer’s was giving me some peace of mind, as well as a little bit of time to myself each day. ¬†I had just spent almost 2 years looking after dad as well as supporting my daughter with picking my granddaughters up from school, or after school clubs etc. . I was spending every day racing against time, making sure I was up early to get to my dads to support him with washing/dressing/eating/medication, it had been exhausting and I hadn’t even realised how it was impacting on me. . I am so glad I took the advice to have a carer assessment.

I have been very involved in getting my dads care package right, it hasn’t been easy and there have been days that things had not gone as expected, in fact there have been days when I was close to cancelling the whole package of care due to quite a few instances, but I will report back on this. . Hopefully it won’t take me 10 months this time.

Talk soon

Chris x

How The Changes In Dads Health Are Impacting On Mine

Memory Loss/Dementia:

It’s been a while since I posted an update on my journey of ‘Caring for Dad’ and over the last few months I haven’t really had the time to sit down and write my blog, as so much has been happening with my dads health and wellbeing.

The changes I am now witnessing in my dad are quite upsetting, not only in his general health, which is declining due to his loss of appetite again, but the realisation that his memory loss, which was diagnosed as the onset of dementia, is really starting to show itself more and more. . .

It has been a constant battle for me to keep my dad active, involved, motivated, well fed, and on top of his medication. ¬†Every day seems like a battle as dad doesn’t seem to have any motivation to look after himself, he needs constant reminding to do even the simplest of things, like making his breakfast (cereal or toast) or changing his clothes!

As a daughter I must admit, the last few months have been very difficult and I wonder some days if I am doing right for doing wrong.

My dad has no recollection of conversations from one day to the next, he can’t remember to take any of his medication, which I now have to administer 3 times a day because he wasn’t taking his meds. ¬†I was finding them in unusual places, in drawers, in glasses, in dishes in the cupboards, in his pockets and even in the bin! ¬†When I try and speak to dad about this, he has no recollection of how they got into these places, so I don’t make a big thing of it, I just smile at him and tell him not to worry. ¬†I now make sure I watch him take his meds. ¬†Sometimes I wonder if he is hiding them because he doesn’t want to take them, or if he just keeps them in his hands and drops them into these places without realising it.

The medication is just one worry of the changes I have seen in my dad.

The memory loss/dementia is starting to be more worrying, dad doesn’t seem to have any idea what day it is, even though I have a whiteboard in his kitchen which I update with the day/date/actions etc. . . Dad doesn’t remember that this is for his benefit, and it’s difficult to know if he realises what is in place for him.

I am now having to remind my dad about changing his clothes as he doesn’t seem to notice if he has spilt food down his shirt, or hasn’t changed in days. ¬†There are days when he hasn’t shaved or even washed, and this is the hardest thing for me as dad was always well dressed, immaculately presented and took pride in his appearance as well as his home. ¬†As a daughter I shouldn’t have to be telling my dad about these thing. . . It makes me very sad!

Dad has also recently been diagnosed with kidney problems and has been referred to a Urologist at the local hospital, this referral resulted in several blood/urine tests, ultrasound scans and a chest X-rays (all of which we are waiting the results of) another worrying wait to see what this means to his health.

The last few months have really taken their toll on me and my general health, I have felt so exhausted, I’ve not been sleeping well and my own appetite has been suffering. ¬†I have found myself running around trying to fit everything in with not enough hours in the day to do some of the things I need to do, like taking time with my gorgeous grandchildren, picking them up from school, just the simple things in life that should be pleasant experiences.

Everyday is taken up with caring for my dad due to his declining health, and although he still lives in his own home, and he want to continue with this as long as he can, the worry for me is enhanced now.

To add an update to the situation as of last week:

I knew I was starting to struggle and I was feeling very emotional some days and quite lonely too.  

I am not a nurse or a professionally trained Carer, I am just doing my best for my dad, making it up as I go along and to say so myself, I think I have been doing a pretty good job so far. ¬†However, over the last few months I have had no support services to help as most of my dad’s assessments of needs had been addresses and his therapy sessions, physiotherapy etc. . came to an end last year.

Therefore, I decided to take the advice of a family member, who suggested I had a ‘Carer Assessment’ they advised me that I had to consider my own health and wellbeing and seek support from the professionals. ¬†I knew this was available and it had been suggested by the care services at some of my dad’s assessments, but I didn’t feel I had needed one at the time.

I had my ‘Carer Assessment’ a few weeks ago and I must say, it was the best decision I have made for myself in a long time. ¬†The assessor was a professional Carer with a range of experience working in the NHS Community Services as well as being a Carer for her own Son. ¬†I felt relieved to be able to talk to someone who knew what I was going through!

I will report back in my next post on the outcome of my assessment.

For further details about Carer’s Assessments please click on the following link:

https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

 

 

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 ‚̧ԳŹūüíô

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. .