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Saying Goodbye To My Parents

My father passed away in February 2012, the day after his 90th birthday. Until his latter years when his health failed, Dad lived well and never failed to be grateful for it. Mum died recently, the day after Mother’s Day on March 16th 2015. My parents’ deaths, after important and memorable dates, have and always will be milestones. I could never have imagined the intense pain I have been feeling and the tears that have flowed since my Mother’s death, often coming out of the blue with no obvious trigger. I felt orphaned, abandoned and totally bereft.

I just never anticipated how much my second parent’s death would bring extra baggage or the strength of loss I would feel for the unconditional love that I was lucky enough to be given by my parents. It feels as though I have lost my family — the family that I grew up in. Although they haven’t done so for years, they will no longer be around to share their wisdom when I have a problem and I feel propelled into a new level of adulthood.

Mum’s demise has triggered grief for other losses, reactivating my husband’s death and more recently, my fathers. There was so much to do after Dad died, including selling their property (Mum had moved into a care home) and preoccupation with Mum’s needs and at times challenging, behaviour. Her death has plummeted me into what feels like a bottomless pit of emotion as I struggle with grief that I had not previously fully acknowledged. It seems grief comes when we least expect it. FullSizeRender

Despite the fact that my parents declining health had reversed the adult parent relationship years ago, I feel a horrible emptiness, like all my back-up has gone. I feel very alone and more vulnerable than before. Gone is the shield that seemed to separate me from my own old age and death, along with any illusion that I will always matter and be able to overcome adversity. Now I am next in line and through no effort of my own, I have stepped up.

The realisation that I will never play the role of daughter again makes me instantly feel older.

Before my parents died I didn’t really feel grown-up and often speculated that this was perhaps one of the best-kept secrets of life, that nobody ever really feels grown-up. Now as the eldest of three siblings and a mother and grandparent, I have to face the reality that there is no one between myself and death. Losing the last generation forces us to re-examine our own mortality. When a grandparent dies, there’s still a whole generation between us and death. With a parent’s death, our own eventual demise feels uncomfortably closer.

The loss of our parents severs a fundamental tie. A generation disappears. A hierarchy ends. The pieces of the jigsaw are rearranged. Our parents are the keepers of our wisdom. We spend a lifetime looking to them for answers. They have been the archive of knowledge about our history, our upbringing, family traditions and the names of all those faces in old photos. With their passing, so to goes the information and insight that hasn’t already been communicated.

Because they were such wonderful people as well as parents, losing them has been especially hard. However I am aware it must be so much harder for an only child without the love and support I have experienced from my brother and sister. I am lucky to have had such wonderful role models in my parents and the support of a loving family following their demise. I am aware that not everyone is so lucky in this respect and I am truly grateful.

My parents were wonderful role models. Their strength of spirit, integrity, sense of justice and values are a fantastic legacy. They ignited my passion for holidays abroad, reinforced my strengths and overlooked my weaknesses. I only hope I can do half as well with my own children.

It is so hard sometimes to walk this life day after day, letting go one by one of the people we love… the people that provided the foundation for our being….the people who loved us unconditionally.

Now I must summon the strength my parents applauded, for its time to move on, to take the first tentative steps on my transformative journey and put my parent’s legacy into practice, just as they had to do when they lost their own parents and my own children will have to do with me.

 

“Treat your parents with loving care…

For you will only know their value

when you see their empty chair…” (unknown)

 

 

 

 

 

 

Person-Centred Care Home Search

As Ivy looked around her new room there was no way of knowing what was going on in her head. We had taken great care to make sure her new room looked the same as her old one. Photographs had been taken of her old room so it could be laid out the same and her ornaments arranged accordingly in her glass fronted cabinet. Her new room had been painted the same colour blue and a  new carpet had been laid, similar to her old one.

Ivy aged 85 had been living with dementia in a care home in West Sussex since her husband died five years ago. Her only son Paul had moved Ivy into the home before returning home to his family at the other side of the world, New Zealand.

Three years ago Ivy’s solicitor in West Sussex recommended Relative Matters to Paul and we have been monitoring his mothers health and well being ever since in addition to arranging for someone to take Ivy out for a drive and a meal out once a fortnight.

As time went on we became concerned about the quality of care Ivy was receiving and eventually, and in consultation with her family, decided that Ivy needed to move to another home. In the course of our assessment we identified that Ivy had a sister she hadn’t seen for years who still lived in Skegness where she had grown up. Thus the possibility of moving Ivy to a care home in Skegness presented itself and  our search began.iStock_000004762284Small

When a potentially suitable care home had been found we arranged to take Ivy for a weekend trial during which a tea visit was organised with her estranged sister. We made the 200-mile journey with Ivy, spent time assessing risks and most importantly, monitored her reaction to the new care environment and her sister. However, we needn’t have worried, Ivy was delighted to see  her sister and beloved ‘Skeggie’ again and it quickly became clear that we had got it right.

And so the move was arranged. We arranged for Ivy’s things to be taken to her new home the day before and her son and grandson flew over to help with the move. They arranged the room ready for Ivy’s arrival so it was ready when we arrived the following afternoon. By the time we left Ivy had reconnected with another resident she had made friends with on her trial visit.

As Ivy beamed up at us from her wheelchair we felt the warm glow of knowing we had made a difference to another person’s life.  We had reunited Ivy with her sister; in the area she held fond memories from her childhood. Job satisfaction doesn’t get much better than that!

Mum, Dad and Dementia

I was on a residential course for my social work training over 30 years ago when I first heard my mother had been diagnosed with dementia. She has had chronic mental and physical health issues all her adult life including anxiety and depression for which she had electroconvulsive therapy (ECT) Talking therapies such as counselling and CBT were not used in those days and I believe that ECT was responsible for her memory loss in the early days.

Mum has always been reserved, strong willed and used to getting her own way. She has also had a low self esteem for as long as I can remember, the reason for which I have never been able to understand.

I have seen first hand from working with people living with dementia how dementia effects everyone differently and how big a part personality, character, life experience, past occupation and lifestyle play in shaping a person’s dementia journey.

Mums dementia journeyleg-lifters

Over the years Mum’s memory deteriorated. Making choices became difficult for her and she would avoid answering the phone, asking my father to take over calls. Dad has always been a source of reassurance for my mother. Just by being around he provided her with a sense of security.

As Mum’s faculties declined my father gradually assumed responsibility for the things she could no longer manage – cooking, cleaning, laundry, finances and arranging and escorting her to the many appointments she had.

The impact of dementia on relationships

My parents had been happily married for over 60 years when my father’s eyesight and health began to fail. His previously placid manner began to change as he increasingly became frustrated with my mother, constantly correcting her when she said or did something wrong. I repeatedly asked him not to give in to the urge to ‘put Mum right’ when he knew something she said was wrong but he was unable to stop doing it.

It was sad to see two people who loved each other struggling to cope, My mother’s cognitive decline and deteriorating memory on the one hand and my father’s failing health and ability to cope on the other, both unable to understand each others’ perspective. They were both experiencing emotional reactions to debilitating, frustrating and frightening changes to their inner world and increasing dependence.

Dementia affects the whole family especially those closest to the person living with dementia. The impact on my father was made worse by his own deteriorating health. He was overcome with guilt at no longer being able to care for my mother and the anger and frustration he felt towards her was a new experience for him. This happened alongside increasing exhaustion due to his illness and it was painful to watch this proud, competent and kind man fighting dependency.

The end of an era

Eventually Dad could no longer cope. Mum’s frequent need for reassurance (the result of  anxiety and memory impairment) and her mental and physical dependency on my father got the better of him and my mother had to move into a care home, something I had always dreaded and done everything possible to avoid.

Separation anxiety

For a long time, my mother was even more anxious than usual. She refused to leave her room in the care home, refused to be compliant with staff (the only way she was able to maintain control) and talked of wanting to die. I think she was experiencing Separation Anxiety; a state of excessive anxiety when an individual is apart from a person (Dad) or place (her home) that makes them feel safe and secure. For people living with dementia, separation anxiety is one of the most common causes for wandering (or as I like to call it ‘wondering’ as there is always a reason) but as Mum was unable to walk unaided, she was unable to wander.

About a year after moving Mum  into a care home, my father’s health deteriorated. I moved in to care for him at the end of his life and he passed away soon after. Mum eventually had to leave the care home due to her poor mobility, lack of compliance with staff and challenging behaviour. However, I will save that story for next time!

The Conundrum of Dementia

The last few weeks have presented an unbelievable challenge for my family and I. My mother was diagnosed with dementia over 30 years ago at St Thomas’s hospital in London. At the time the cause of her dementia was not identified. If it was we were never told. Mum also suffered from severe depression and anxiety for many years and had several courses of ECT (Electrical Convulsive Therapy) when I was a child. She also had a number of chronic health conditions that affected her mobility.

Over the past few years my Mother’s memory has progressively deteriorated to the point she was diagnosed with Alzheimer’s disease. However the progression of the disease has been somewhat unusual. Despite being aware that Alzheimer’s disease affects everyone differently, some of the other symptoms that accompany Alzheimer’s have not been present and my family and I do not accept this as the cause of Mum’s dementia.

Recent difficulties have been around Mum’s non-compliant behaviour resulting in staff being unable to manage her mobility and emotional outbursts. These challenges were in contrast with days when she was lucid, eloquent and sensitive with a good recall of recent events. 013_woman_with_carer_optimised[2]

Triggers for emotional outbursts

What triggered her emotional outbursts was not always apparent. A confusing environment with lots of distractions can upset people with dementia, as can situations that test their memory. However, with Mum, she appears to get a misunderstanding or misperception of what was being said or requested stuck in her mind. Other triggers include:

  • Feeling left out, or abandoned
  • Feeling threatened or lost in a world that no longer makes sense
  • Reminders of her lost capacity

When it comes to handling emotional outbursts I have found it vital to calm myself first. People living with dementia are sensitive to our mood and pick up non-verbal tension or anger more so than the content of what we say.

Like many people living with dementia, my mother does not respond well to logic and reason. Much  better to acknowledge that she is upset and assure her you will help her feel better. Also to validate her feelings of loss or fear while not agreeing with her delusions.

The affect of medication for managing behaviour and mood

In my previous post I described how my mother’s condition deteriorated significantly and how the situation was reversed by taking her off most of her medication. In the following post I explain what happened when they did.

The consequences of behavioural challenges

Younger staff found it hard not to take Mum’s attacks or outbursts personally and she often needed three staff to get her washed and dressed as she would not comply with staff requests to support herself.

Eventually her care home said they were unable to manage her any longer and she was assessed for NHS funding and found to be ineligible for even the lower rate. And so we began to search for a care home that could manage Mum’s physical and mobility problems as well as her dementia and behavioral issues.

The difficulty of finding good care

In our area, many homes do not provide person-centered dementia care (an essential requirement in my view) in an environment that is accessible for wheelchairs. This is because they have been converted from large old houses that have different levels, steps and no lift.

A new care environment

Eventually I turned my attention to a home that takes people at the more severe end of their dementia journey and present a challenge to other homes. It is registered for nursing as well as social care, is purpose-built and double the size of the one Mum was moving from.

Due to the nature of the people who live there,  the environment is very different. No matching furniture here, or pretty curtains at the window. No patterned wallpaper or carpet on the floor in the long corridors. We were told people with dementia don’t need these things and what they need a less ‘busy’ care environment to help them feel calm.

However, what they did have was a highly trained and experienced manager who enjoys an excellent reputation and a large team of staff, used to dealing with problem behaviour.

Mum has lived there for a week now and despite our initial concerns, early indications are that she is settling well and responding to the calm approach from staff and peaceful atmosphere prevailing in the home.

The balance between aesthetic environment and skilled care

Some of us have found it difficult to accept the lower standard of care environment. However this is more than balanced by an approach to care and behaviour management that makes Mum feel calm, relaxed and happy. When people are living with dementia we need to accept their current reality and try and see the world (and needs) through their eyes rather than our own.

Of course everyone is different and some places will upset one person and comfort another. Mum’s previous home was excellent but as she continues her dementia journey, her new one appears to offer just what she needs right now. Relaxed, expert and person-centred care. 

The Consequences of Reviewing Medication

In my previous post, The Cost of Failing to Review Medication I talked about the dangers and consequences of not reviewing medication for older people living with dementia. In this post I want to highlight the consequences of withdrawing long term medication for depression, Alzheimer’s and behavioural challenges without a proper plan in place to manage withdrawal. Medical Drugs for Pharmacy Health Shop of Medicine

The effects of withdrawing my mother’s medication

Following the review of Mum’s medication the drugs were withdrawn and have finally left her system. Before long her behavioural challenges returned with a vengeance and she has become distressed. Mum has suffered from depression and severe anxiety for most of her adult life and her dementia which began over 30 years ago became more complex a few years ago. She therefore been taking a cocktail of strong and powerful medication, some for many years. Since the withdrawal of medication that was making her feel sick, confused, disconnected, unable to speak and floppy, Mum has become very anxious and presenting angry outbursts, paranoia, hallucinations. This causes her immense frustration and sadness which is typical of older people living with dementia in residential care homes who have experienced so much loss and change.

Loss and lack of insight

Older people people living with dementia moving into care homes have lost their homes which have been condensed into one room, often their partners, local community connections, control over many aspects of their life, and to their families and close friends, their personalities. Mum also remains convinced that there is nothing wrong with her mentally, constantly reminding us that she is still an intelligent woman. Like most people living with dementia, she has no insight into her own abilities.

Getting it right

Getting the medication right for a person with Dementia is a complex issue that requires trial and error and a lot of time. In the meantime staff at the residential home are having to manage my mother with all her behavioural difficulties and withdrawal symptoms from the years that she has been on, what are very powerful drugs. Unfortunately, whereas people addicted to heroine would have a structured programme of support and carefully monitored medication to manage their withdrawal, older people like Mum are often left to go ‘cold turkey’!

Time is needed

It becomes very difficult to watch someone you love needing urgent medical attention, as health professionals are vastly overstretched and arranging appointments for them to see Mum takes time. Advocacy, kindness and compassion

Unfortunately the situation will not be resolved immediately and there are likely to be many hurdles to overcome before the dose of Mum’s medication has been adjusted correctly. Unfortunately older people living with dementia just aren’t treated with the same priority as younger adults. We can only support our elderly loved ones, advocate on their behalf and support them with the kindness and compassion they deserve. I would love to hear from anyone who has experienced similar problems with medication for an older person living with dementia.

5 Top Tips For Managing Care When Local Authority's Cut Funding

Meg’s eighty-five year old mother Violet had severe arthritis, a heart condition and was showing early signs of dementia. Home care support was arranged and funded by Social Services, and Meg and her sister took it in turns to support Violet on Sundays. When Social Services changed their criteria, Violet’s funding was reduced. Following reassessment by her social worker, shopping and a monthly visit to her sister were no longer funded.  Also, Meg’s request for support for her mother during the night in case she wandered into the road, was refused as was  considered a low risk because Violet had never actually left her home at night .009_old_woman_smiling_optimised[2]

Get help

Meg contacted Relative Matters to see if we could help. This is what we agreed together to ensure Violet’s needs were met:

Look for other ways to do things

Meg’s sister Rose could take her laptop and mobile broadband when she visited Violet each week. Then, she could go through what shopping her mother needed with her and place an order on-line. Delivery could be arranged for when Meg or Rose were with their mother so they could put her shopping away.

Reprioritise care  time

Meg had a demanding job, so was unable to take Violet to see her sister during the week when it was more convenient for her aunt. Meg could arrange to support her mother on one Saturday afternoon each month, which freed up some of the care worker’s time so that she could take Violet to see her sister during the week.

Use assistive technology

Meg could buy a Wander Minder and place it by Violet’s front door. This is a small unit with a motion sensor and timer that can be set to emit a pre recorded message at night telling her mother that it is unsafe for her to go out as it was nigh-time. Meg could also purchase a contact mat, which has a battery-operated transmitter designed to be placed under the front door mat. When stepped on, the mat triggers the transmitter and alerts the carer. As she lived nearby, Meg could respond quickly if her mother tried to leave the house.

Keep the older person at the centre

These measures combined, resolved the problem and provided the reassurance Meg and Rose needed.

Emma’s Story

Emma had been concerned about her mother Martha for a while, because she had been showing signs of dementia, such as repeating questions to Emma and becoming confused when she carried out basic tasks like preparing scrambled eggs or making toast. Eventually Martha was diagnosed with Alzheimer’s disease, the most common form of dementia.

Caring for an older person bigstock-Old-And-Young-Hands-11671895

At first Emma and her sister took turns to stay with their mother but soon found they could not keep it up. They contacted Relative Matters, an elderly care consultancy, who found a small day centre not far away, which specialised in looking after people with dementia and arranged for her mother to attend, five days a week. This enabled Emma to continue her career as a physiotherapist and her sister to spend more time looking after her husband, who recently had a stroke. When Martha attended the day centre, Emma and her sister knew their mother was safe, socially stimulated and receiving nourishing food and regular drinks.

As her mother’s disease progressed, Relative Matters arranged for regular carers from an agency to provide care and support for her mother before and after she attended the day centre as well as during the evening and at weekends.

Providing consistent care

To help provide consistency, Emma was advised to set up a care journal for her mother. Whoever was with Martha, would record the important details of their shift, such as food eaten, fluids consumed, bowel and bladder movements, activities accomplished and other relevant information.

Emma, her sister and the care workers became proficient at using the hospital bed and hoist provided by the district nurse, a wheelchair, wheelchair ramps and a food processor to prepare easy to chew, soft food as Martha had chosen not to wear her dentures. Relative Matters arranged for Meals on Wheels to be delivered on a Saturday to give Emma a break from preparing food and free up time to take her mother out.

A peaceful death

When her mother became ill with pneumonia, Emma took special leave from work and moved in to look after her. During Martha’s last forty-eight hours of life, she was loved and comforted by Emma and her sister, attended by the district nurse and heard her son’s voice over the phone, all the way from Australia.

A Family Carers' Tale – Caring For Someone With Dementia

Here is a story about how my elderly care consultancy, Relative Matters, helped two sisters care for their elderly mother who was living with dementia, at home.

Emma and Ruth’s Story

Emma had been concerned about her mother Martha for a while, because she had been showing signs of dementia, such as repeating questions to Emma and becoming confused when she carried out basic tasks like preparing scrambled eggs or heating a pizza. Eventually Martha was diagnosed with Alzheimer’s disease, the most common form of dementia.

At first Emma and her sister Ruth, took turns to stay with their mother but soon found they could not keep it up. We found a small day centre not far away, which specialised in looking after people with dementia, so Emma arranged for her mother to attend, five days a week. This enabled Emma to continue her career as a physiotherapist and her sister to spend more time looking after her husband, who recently had a stroke. We pointed out to Emma and Ruth that when Martha attended the day centre, she would be kept safe, socially stimulated, receive nourishing food and regular drinks.

As their mother’s disease progressed, we helped Emma and her sister to claim the higher rate Attendance Allowance and arrange for regular carers from an agency to provide care and support for their mother before and after she attended the day centre.sisters

To help provide consistency, we advised Emma and Ruth to set up a Care Journal for their mother. Whoever was with Martha, would record the important details of their shift, such as food eaten, fluids consumed, bowel and bladder movements, activities accomplished and other relevant information.

Emma, Ruth and the care workers became proficient at using the hospital bed and hoist provided by the district nurse, a wheelchair, wheelchair ramps and a food processor to prepare easy to chew, soft food as Martha had chosen not to wear her dentures. We suggested Emma and Ruth arrange for Meals on Wheels to be delivered on a Saturday to give them a break from preparing food and free up time to take their mother out.

When their mother became ill with pneumonia, Emma took special leave from work and moved in to look after her. During Martha’s last forty-eight hours of life, she was loved and comforted by Emma and Ruth, attended by the district nurse and heard her son’s voice over the phone, all the way from Australia.

Dying Matters

This week is Dying Awareness Week so I have decided to tell my personal story, where I believe knowing what my father wanted at the end of his life made a real difference to him and to my own bereavement journey.

Whether or not to resuscitate

My father’s life journey began to slow down a few days before his 90th birthday, a milestone he desperately wanted to reach as no-one in his large family had managed it, he lost his strength and became confined to bed. I moved in to care for him as he wanted to remain at home and I didn’t want him to spend his last days in an impersonal hospital ward Neither did I want his life prolonged, as his quality of life had deteriorated badly during the past months. I discussed this with his GP as I knew it is what Dad would have wanted and kept the DNR (Do Not Resuscitate) form available in case it was needed.IMG_0005

Knowledge brings confidence

In spite of knowing I was carrying out Dad’s wishes, when I heard his worsening cough, I wondered whether a trip to the hospital with antibiotics and IVs etc. would ease his discomfort. The thought was only fleeting and I was thankful we had discussed the matter before his health deteriorated.

Sleep was so important

Watching someone you love slipping away when there is nothing you can do about it is not easy. I felt as if I had stepped outside normal life and was suspended in some kind of time warp. Dad had a worsening cough, spent most of his time sleeping and must have ached from being in bed so long. I was glad he slept through the indignities to which he had to be subjected and was startled by the realisation of how much like an infant he became. My heart ached when I reflected on the proud, upright and independent man he had been.

Knowing your loved ones wishes

Dad passed away peacefully the day after his 90th  birthday, in his own home with his favourite music playing. I was able to reassure him that my brother, sister and I would make sure Mum was ok in her care home and told him he should be proud of the life he had lived and now deserved a rest. I am so grateful I was able to spend his last days with him and to contribute to him having the dignified death he deserved on his own terms. I could never have done this without knowing how he wanted to make his final journey.

A life well lived

I miss him and my heart aches for what I have lost but I know he is in a better place. My own bereavement journey has also been enhanced by the knowledge that I carried out my father’s final wishes and his affirmation that he had done all he wanted and lived a good life. I can think of no greater privilege than to help someone you love die their way. Dying really does matter.

You can watch this episode of Scott & Bailey on ITV Player until 6th June 2013. The duo investigate the death of a care home resident whose daughter complains about the level of care he was receiving. Will they find evidence of foul play?

https://www.itv.com/itvplayer/scott-and-bailey/series-3/episode-6

 

 

A personalised response to dementia care

When my mother was first diagnosed with dementia over 20 years ago, our world was turned upside down and presented one of the greatest challenges we have ever had to face. My father was in good health at the time and managed to minimise its effects on the rest of the family. However,  as the years rolled by and his own health began to deteriorate, I became increasingly involved with managing their care until it all got too much for my father and my mother had to move into a specialist care home for people with dementia.

One of the most Important things we did for my mother was to personalise her care plan and keep it updated..

It is so important for people with dementia to have a good person-centred care plan, regardless of whether their care is being delivered in their own home or in a residential setting. It is a vital tool for carers who rely on care plans to inform them about the individual.

When we recently updated my mother’s care plan, we included brief information about her personal history such as her previous occupation, hobbies and interests, likes and dislikes as well as how her health and well being needs will be met.

We developed the care plan together in a pretty album that includes photographs to illustrate her life and the things that are important to her as well as the things that are important for her. Here are some of the things we included. 

  • The need to keep calm around my mother as she can become anxious. Staff are reminded that people with dementia are generally very sensitive to feelings and can sense if others are in a rush.
  • As my mother has been plagued with depression for most of her life and especially low since my father passed away, she needs help to focus on the good times and happy memories. To help with this we put together a life storybook with carefully chosen photographs of family holidays, Christmas, birthdays and other significant events, in chronological order. Staff are encouraged to go through this with her when her mood is low, to help focus her mind on more positive memories.
  • Terminology is very important to my mother. Her dislike of the care home where she lives being referred to as her ‘home’ is documented in her care plan and carers requested to avoid using the term as it upsets her.
  • My parents enjoyed a glass of wine with their meal for many years and carers are reminded to give her a glass of wine (provided by family) with her main meal each day.
  • Staff are reminded to put my mother’s iPad on charge at night and remove it when they get her dressed in the morning. We use “Mindings’ a software programme that enables the family to remotely update her calendar, send photos and text messages and see what the family are up to on Facebook. Social tele-care helps older people keep up to date with family life.

These are just a few of the many issues that combine to make my mother’s care personal. She, like every other older person with dementia, deserves nothing less.