Independent Living – Extra Care

Independent Living with Extra Care – What does this mean for my Dad?

It means that my dad lives in his own apartment independently but with the support from an on-site care providor, who ensure that my dads care needs are addressed as part of an agreed ‘Package of Care’

Prior to my dad moving out of his own home, he had a care package in place with a care providor but when he moved out, that care package ended and another care package was put in place with the new care providor, which started the day he moved into his new apartment.

The care manager arranged a meeting with myself and my dad on the day he moved into his apartment, and this gave me and my dad the chance to discuss his needs, and how they could be met.  I still find it hard to let go and allow the support workers to support dad, I am still there every day in between his support calls.  I do all his food shopping, washing, cleaning, taking him to hospital/clinic appointments, take dad for his pension as well as family get togethers, Sunday lunch etc. . It’s so important that dad still feels he is part of a family and can enjoy time with his grandchildren and great grandchildren.

It soon became apparent a few weeks into dads move, that he was struggling to become familiar with his new surroundings, dad seemed confused and disorientated and couldn’t remember moving into his new apartment.  Dad had days when he seemed to think he was in a hotel and was waiting to go home, or in a hospital or clinic and wondered when someone would pick him up to take him home.  I knew this was due to his dementia and it was a difficult time for my dad, but I was also feeling very anxious as dad wasn’t settling in very well.

I understood that this move would be a major change in dads normal routine, but I knew deep down the move was a positive one and that dad was in a much safer environment within this extra-care development where he had plenty of support from the care provider.

Dads care package consisted of the following:

  • Morning – one hour call to assist with personal care, shower (when required) shave and fresh clothes.  Prepare breakfast and administer medication
  • Lunchtime – half hour call to prepare lunch and administers medication
  • Dinner/Tea – half hour call to prepare tea and administer medication
  • Bedtime – Half hour call to check dad was in bed and all was ok
  • inbetween these calls, dad also has welfare calls to check he has a drink, fresh cup of tea and snacks (this is to encourage eating little and often as dads appetite is not good, although dad is still able to make a cup of tea or even a piece of toast, he still needs promoting to eat throughout the day)
  • Dad is also encouraged to join in activities which are delivered on-site, such as in-door boules or play your cards right and bingo, as well as social events such as a local choir/singers and buffet, which always goes down well due to interaction with others, which my dad always enjoys (and it’s so good to see dad enjoying social interaction, this is so important for his health and wellbeing.

My Dad has had his ups and downs but most days he now seems a lot more settled and happy.  He has lots of visits from friends and family and I am still very much involved with his care everyday.

Dads dementia can cause confusion and he has good days and bad days, but there have definitely been more good days.

Over the last year I have found myself researching more and more into dementia and the different ways it can present itself, I have found the more I know about dads condition will enable me to help my dad and understand and communicate with him on his terms.

I recently attended training to become a ‘Dementia Friends Champion’ for Alzheimer’s UK and I am now in the process of delivering dementia awareness sessions to the support staff who care for my dad.  I have been very surprised by the lack of knowledge and understanding of dementia within the care system, and I am hoping to be able to change this by getting involved in dementia awareness.

I will tell you more about my role of Dementia Friends Champion in my next post, but if you would like to find out more in the meantime, please follow the link below:

https://www.dementiafriends.org.uk/WEBArticle?page=what-is-a-champion#.XACb5ZDfWrU

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Settling In – Time to Reflect

Reflecting on Dad’s Move: 

Its been four months since my dad moved into his new apartment, an independent living/extra care development, as described in my recent post.

The settling in period has been filled with anxiety, uncertainty and confusion, which has been upsetting at times, to say the least!

Dementia. . This has been the biggest cause of anxiety as my dad has not fully come to terms with this move and I wonder if he ever will. . .

Dad has good days when he talks about how lucky he feels to have been selected for a new apartment (being 1 of over 800 people who registered their interest and only 57 properties were available) However, there have been bad days when my dad has become confused about where he is, wanting to know when he’s going home.  Sometimes he’ll look around and comment on how nice it is, but then say, “it’s not my home though” even when I point out all his familiar furniture and family pictures, I can see him trying to recognise them in his own way.

I knew it was important to make sure dad’s new place was kept as familiar as possible, setting out the lounge and the bedroom as it was in his previous home.  He had the same bed, wardrobes and accessories in the same position in the bedroom, his lounge was set out as close as possible to what he was used to, with the armchairs and furniture in similar positions, hanging family pictures and placing lamps in similar places to his last home. As much as I have tried to keep dads place familiar with his belongings around him, sometimes it doesn’t seem to be enough.

It’s important for people with dementia to feel safe and secure and I wanted this to be the case with my dad. I want him to be happy here.


Image shared by The Dawn Method thedawnmethod.com 

spend a lot of time worrying about my dad, worrying about this move, worrying about the impact it has had on my dad.

  • Was it the right move?
  • Is dad happy?
  • Does dad understand where he is?

I know deep down that dad is a lot safer here, as he had started to struggle getting up and down the stairs in his previous home and he wasn’t a good candidate for a stairlift (after assessment) due to the dementia, but this is such a big change for a man who had been so independent and had never relied on anyone for anything.

He was the head of our family, he was the one we all went to for advice, he had all the answers, he was always there for us.

Now as a family we have to be there for him

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 – Initial 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 – The 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.

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 ❤️💙

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.

 

Take Time To Admire Nature – It’s Good For Your Wellbeing!

Aside

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.

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I took some time to stand and stare, stunning colours everywhere.

Autumn winds had done their duty, bathing the park in all its beauty.

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I took some time to ease my mind, capturing my thoughts inside.

Nature brings out the best in me, a relaxing positivity.

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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.

 

Time to Change/Time to Talk Day

Time To Change/Time to Talk Day

We all need to help change the stigma and discrimination experienced by people suffering from ‘Mental Health’ problems.  Any one of us could suffer from a mental health issue at any point in our life.

http://www.time-to-change.org.uk/timetotalkday-log-your-conversation

There needs to be more information, education and open conversations to change the stigma that is attached to mental health issues.   There are people who still hear the words ‘Mental Health’ and immediately think ‘Crazy’ a word that has been attached to it for so long. . I might be taking a risk saying this, but I still hear this even today!

Having worked in the NHS for 28 years (non-clinical roles) starting my career in an Acute Trust, it wasn’t until I started working in a Mental Health Trust in 2004, that I became more aware of the bigger picture of health issues, and the multidisciplinary services they provide to the community.

When I began writing my blog it was with the intention of recording the journey my dad and I had taken since he suffered a heart attack.  That was 10 months ago and now, having followed a number of paths to pursue the right care and support that my dad required, due to a number of health issues identified, I find myself liaising with a service that sits within the ‘Mental Health’ Trust.

‘Later Life and Memory Services’ (LLAMS) 

One of my earlier posts described how I was noticing small memory lapses and episodes of confusion with my dad.  These episodes did not happen every day, and some I just put down to his age (83) I even laughed with him about the things I forget, that he can easily remind me of sometimes. However, the time came to address these episodes as I am aware the earlier a health issue is identified (such as Dementia or Alzheimer’s, the earlier treatment or medication can be offered)

My last post (Referral to the Memory Clinic) described the initial referral to this service, and some of the issues regarding ‘Signposting’ (yes, as you know I have experienced a number of issues with signposting to these vital services, which is why it has become a bit of a bone of contention)

http://www.5boroughspartnership.nhs.uk/base-page.aspx?ID=4852

Memory Clinic Referral:

Dad’s referral to the ‘Memory Clinic’ a service provided by the Mental Health NHS Trust, has resulted in two home assessments, a number of questionnaires, health and wellbeing checks and a referral for a brain scan, prior to an appointment with his assigned Consultant Psychiatrist.

Dad has two pathways to follow this week:

  1. Follow up appointment with Cardiology (Acute NHS Trust – Post heart attack review)
  2. Brain Scan with Radiology (Post referral from Mental Health Services)

Time To Change/Time to Talk Day:

You never know when you will require the services of a Mental Health Trust – It’s time to see an end to the ‘Stigma’ 

My next post will report on both outcomes, and the next step on this journey.