Caring in Dementia - Care Partnerships

Care Partnerships

When you have a loved one that you care for who is living in a care home it is vitally important that you try and arrange where possible for members of the family and friends to visit and provide additional stimulation for the person in care on a regular basis.  This some might say can only happen in an ideal situation and the way that social care is going at the moment which doesn't put the person and their needs at the center it leaves a lot to be desired.

In the video I look at what the care partnership has been like for me.  With mum in a home I paid an active part in her care, and worked out ways in which I could spend as much quality time as possible, along with other family members.

Check out the video

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Privatization

Most Care homes around England have been privatized.  Councils then get charged hefty amounts each week to top up the charges that the residents pay either out of their pensions or from the sale of their home.  If you lived in rented accommodation then your contribution is usually most if not all of your state pension, depending on how much you are assessed that you need to pay.

Care homes are supposed to be monitored, but many care homes can go 1 and 3 years without having a visit from the local authority who are supposed to keep an eye on how the residents are treated, and the running of the home covering staff and more.  If there are no checks this leaves room for incidents/abuse to happen and homes continuing to operate poor standards of care with a high turnover of staff.  

I noted several online reports on the care home directory for England that show many care homes listed had not met their basic standards and had issues raised like ‘clients not receiving their medication’ or ‘no police checks done for staff so that the residents were vulnerable’ and many more things that were highlighted and the care home was left with the responsibility for making sure it met the standards next time.

Partnerships are important

I say that this is a partnership as you have to keep eye on things that are going on in the care home and raise any concerns because you don't know what is going on when you leave.  It is unfortunate if you live in a different country and therefore cannot visit on a regular basis and for many they have to trust that their loved one is receiving the care that you want them to receive.

It isn’t easy, and you have to do what you can, but you have to play a part.  The whole system needs shaking up, because more and more people are feeling isolated and unable to look after themselves and feeling abandoned while their families don't know how to relate or cope

Things to try

There are a few things to help you manage your situation especially if you have family members or friends who are not normally involved with caring for your loved one and don’t visit.

• ·    Create a schedule for visiting – it is better that they spend half an hour 2 times a week than sporadic visits or not at all -  It is a short space of time where they will be able to do a short activity
• ·      Ask them to perform specific tasks, create a short list of things your loved one likes doing that your family can do, activities such as going for a walk, hand or foot massage, read the paper or book out aloud, sing some songs, tell the person about the day that you have had or talk about the weather!!.
• ·     Go through some photographs, could be a holiday or childhood images and go through together and talk about them. 
• ·     Get some samples of herbs with a fragrance, you can also do this with oils – some common ones are Rosemary, Lavender, Orange, Chamomile and let them smell them.
• ·     Getting other people involved in the partnership takes the strain off you and shares the load.

There is no perfect day, so even with a list of things you need to stay flexible, and go with the flow of your loved one who might not have had a good day, so may not want to go through the photographs, but might want to listen to some music from their era, or have you hold their hand while you talk to them. 

There are a range of creative activities that you can also do whether you are caring for someone or not that help you express what you are going through.

Check out some of my art videos and podcasts to help you spend more creative time, and remember to take some time out for you!  

Check out this weeks Podcast

Stay blessed and be a blessing!

CLICK HERE

Caring in Dementia - Engagement comes in Different Forms

Engagement Comes in different forms and when you are caring for someone whose needs increase over time you need to look for new ways to help them to enjoy activities they could previously do for themselves.

In the following video I address the need to engage, and the benefits that can come for both parties if you remain flexible and spend time looking at the things that do go right and bring positive outcomes.

After spending time with my mother at the home I began to wonder about how I engage with her and whether I had been putting a limited viewpoint on her needs to fit into something that I was comfortable with. We often put our perspective on things to suit our own needs and sometimes we have to look at what is really happening what the benefits are to see if we need to have a shift in our perspective.

I use to feel that mum needed to be engaged in an activity for all her waking moments, but I began to see that while we all need to be engaged with activities at different times of the day I had to recognize that the way that mum was now communicating with me had changed and rather than rushing through a list of things I needed to give her time to enjoy and be in the moment of the activity that I was doing with her. We do this to ourselves as well - gulping down our foods, not taking time out to enjoy our surroundings, working while eating lunch at our desks - I am sure you can think of other examples.

I began to think about different things that mum enjoyed that we can often take for granted and realized there were so many things that I did with her before the dementia became so severe that I just needed to break them down into smaller steps.  I found that something as simple as massaging or just holding her hands while I spoke to her was something that she seem to enjoy – that connection through touch is probably one of the biggest things that is neglected and there are so many more things that can be done. 

As you look at your own life think about the following:

• Are you rushing from one thing to the next, 
• how do you see your own situation – 
• Do you even see yourself, and give yourself time to respond to your own needs?
• Do you walk around on automatic pilot?  
• When was the last time you heard your own voice?  

Take some time today to recognize what needs you have and how you can address them, think about spending some time in your journal or other creative activity.

I will be sharing more about my activities with the arts and health and showing you some of the activities you can do that will have positive benefits to your own health and well-being.

I will be launching my Patreon account at the end of the week and you will be able to sign up to receive patron only posts and videos and other rewards tiers which will help support me create Art Resources that impact on health and well-being.  It would be great to have you on this journey with me.

For more commentary, check out the Podcast

Check out some of my previous posts HERE and HERE that might encourage you on your journey, and some creative activities HERE and HERE 

There is also a book you can check out below just one of the many resource you can try called Chocolate Rain - 100 Ideas for a Creative Approach to activities in Dementia Care

Stay blessed and be a blessing!

Caring in Dementia - Part of you has to shut down

As I cared for my mother who is living with Dementia and is unable to look after herself I went through a range of emotions to deal with the situation.  The emotions included sadness, loss, guilt, anger and more.  There was no manual that could help me identify or avoid them and over the years I had to find ways to navigate the onslaught of emotions that at times came solo, but very often alternated at a moments notice and came all at once.  In the video below I share my thoughts on dealing with the emotions.

As I cared for my mother who is living with Dementia and is unable to look after herself I went through a range of emotions to deal with the situation.  The emotions included sadness, loss, guilt, anger and more.  There was no manual that could help me identify or avoid them and over the years I had to find ways to navigate the onslaught of emotions that at times came solo, but very often alternated at a moments notice and came all at once.

I think that most people have this 'emotional off switch' when dealing with stress on a recurring basis.  The switch becomes activated to enable them to cope with difficult situations and circumstances. 

What emotional areas have you shut down?

I found that over the 17 years of looking after mum and more recently since she has been in a home that I develop ways to deal with the situation to help me get through the day to day.  When you work in the care profession it is natural to access this 'emotional off switch' as they deal with sickness and death as a regular occurrence and it can sometimes come across as if they are cold and uncaring when dealing with a sensitive situation.

Flipping the Emotion Switch

I flipped the emotion switch when I began to care for mum and couldn't think about the impact of caring for her as her daughter or to the family while I cared for her.  I made sure that all her physical, and emotional needs were taken care of and didn't think about how I felt as her daughter as there were things to be done, I just got on with it.

Now she is in a home, my thoughts only rest on how she is being looked after, what I observe in the interactions with the staff and the residents and making sure that I notice any changes that may be taking place.  One of the worst emotions I had ever felt was walking away knowing that she couldn't do the same when she was ready and despite feeling sad I had to put on the brave, upbeat and cheerful face, but I wondered if I was able to fool mum.

Sharing your experience can really help

You don't really hear people talk about it, and two years ago I kept my feelings tightly on lock down.   The reality of it is that whilst I don't want mum to be in a home there isn't anything I can do at the moment to change this reality, so you have to decide how you come to terms with the thoughts of   abandonment, and all the other things that call you to trust that those who work in the care profession are there because they want to be, not just trying to make money. It calls for a certain level of trust and faith that she is surrounded by people who value life and are treating the elderly residents with love and care.

In the filing cabinet of the mind you put the emotions in a hidden file, and you don't ever call the file up to review, though you know you will have to some day, but for now you lock the door and swallow the key, otherwise you would cry every time you leave.  

How to open up?

How do you press the reset button?

Once you have flipped the switch and shut down those areas emotionally how to you reset?  This has been a question that I pondered on quite a bit.  For a long while I didn't want to think about it, let alone write about it, but at some point you have to acknowledge it and deal with it for your loved ones sake as well as your own.  I found recently that when I acknowledge the emotions and shared them that I heard from so many others who were going through or had gone through the same situation, I wasn't alone.   Some people shared their heart and thanked me for sharing mine, others felt I shouldn't be talking about the emotions in an open way.  I understand that some people are not comfortable discussing these things, and they may have to look at other ways they can come to terms with the issues they face.  

 You often feel isolated as a carer and you go it alone, soldiering along without realizing that when you shut down these areas it very so subtly begins to effect other areas of your life.  I felt as if my voice was being effected, like there was a giant lump in my throat and I couldn't express myself, and that is where you then begin to isolate yourself even more.  

Over the years gathering first hand experience I have been able to share what I have learnt and presented at conferences, seminars and workshops in England, France, Norway, Montserrat and Barbados about the Effects of Care on the Carer and the use of the Arts in Care.  I have spoken on the radio, barbados tv and had work in magazines  It has been a great honor to see that sharing my experience can help so many others in their walk.

Talking at the Allioagana Festival of the Word - Montserrat 

Barbados Alzheimer's Association Conference

The more I shared the practical side, the more people expressed support because it helped them talk about their situation.  It also helped non carers relate and empathize with those who are carers, finding ways that they too could offer help and look at strategies for creating a support network.

Carers Support Services

It is absolutely vital that carers have support systems in place that they can access to discuss what they are going through alongside meeting others who may have different methods for coping, there needs to be recognition of cultural differences and reaching those carers who would not normally use the services on offer.  Sharing your experience with those who relate stops you from permanently locking down the negative emotions that if internalized for an extended period will affect your health and well-being, so finding out about your local carers groups and activities for support is important.

Spending as much quality time as possible is the key

The Arts and Alternative therapies and more recently Garden Therapy have always been a go-to for me, and I have spent my time researching and developing different ways to not only help me but to give my mum a better quality of interaction, whether it be through massage, singing or playing music that she can relate to down to creating simple instruments and age appropriate toys and activities that she can relate to as she appreciates the interaction as well.

While shutting down certain emotions might help you in the short term you have to realize that it cannot be a permanent solution and will impact negatively on your health and well being over time.  Making sure that you have things in place along the way will help you find more balance to your situation.  Check out some of my previous posts HERE and HERE that might encourage you on your journey, and some creative activities HERE and HERE that you can check out.

If you want to support some of my initiatives to provide free online creative resources for those who are carers, perhaps you will consider joining me on Patreon, details to follow next week.

Stay blessed and be a blessing.

Listen to the podcast

Beyond Words Exhibiton - London

A piece of Me still remains - Mixed Media Art - Amanda Trought

I have been invited to take part in the Exhibition called Beyond Words - The Healing Power of Art, running from the 4th June to 27th June, taking place at The Darnley Gallery, London.

It is great to be included in the exhibition.  My work for me has always been about unraveling and sharing stories, and I feel that there is always an element in a piece of art that can be related to.  

The Arts have been used to communicate and express experiences in our society past and present, it keeps our cultures, and traditions alive.  It can take many forms through craft disciplines such as quilting, pottery, weaving, music, dance, and so much more with the stories at the heart.  Our stories and skills are handed down the generations, and with each generation we can look back, learn and add our experience. 

When we recognized the value of the use of story telling and symbolism in our art we will also see how using it as a form of expression around our health and well-being is valuable.

There is nothing more fulfilling than learning a skill, being taught by an elder/master craftsman and creating from what you learnt, and sharing that piece of work you have created with your own hands.

I have been using art and creativity as a way to express different aspects of my life and perspective. I remember the stories heard from our elders as they gathered around the kitchen table, kids were seen and not heard and often the adults would forget were were lurking in the background until we piped up with a question, and they would order us out.  This too comes out in the creations.  

Learning to capture moments of our lives in art and creativity tells part of our life experience that you might not see if you spoke to me.  When I think of my experience as a carer I learnt to look at my role in a very ordered way and the work I have in this exhibition looks at how I learnt to compartmentalize every thing I did when I looked after my mum who is living with Dementia, and the feeling invisible around all the different roles that are taken on.

A Piece of Me still Remains - Amanda Trought Mixed Media Artist

The different images represent the different roles that I had to take on to make it work, and the numbers represent the passing of time.  I was never able to express that it was what I was doing, but as I created the painting it was what was coming out and found its way to the canvas.

A Piece of Me still Remains - Amanda Trought

I hope you will be able to make it to the exhibition, there is a wonderful range of art work on display.  The official opening night is on Friday 8th June 

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Arts in Health Network

Join the free Arts in Health Network, find out about events happening all around the world, share your Arts in Health Network projects.

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London Creativity and Wellbeing Week

If you want to take in some other events then check out the Creativity and Wellbeing Week, an initiative of the London Arts in Health Forum

For a full list of events happening both in and outside of London click HERE

There is a great variety of events that you can go along to.  Who knows it might inspire you to do something totally new and nurture your creative voice!

Stay blessed and be a blessing

Dementia and Care - Asking for Help

Asking for Help

Being a carer for nearly 17 years to my mother who is living with dementia had it's ups and downs.  Amidst the feelings of hopelessness, guilt, anger and everything in between, there was joy, laughter, dancing and someone not wanting to leave the dance floor, (and it wasn't me!!!)  I shared some of my journey HERE

For those who knew mum before the dementia developed into the more severe stages they would think back and smile at her beautiful personality that always lit up a room, I am so glad I took so many videos and photographs of her

I  knew that at some point I would need to express how I felt the emotions that I experienced as a carer, those true and honest feelings that we very often keep hidden - whilst I shared the practicalities without emotion.  I wanted to share the ups and downs and how I dealt with them.  

Each post that I will share touches on an emotion but essentially I hope if you are or have experienced the same thing then you would have the strength to share your voice as well and not stay isolated - some feel it is a sign of weakness if you share what you are going through.  I think it is perfectly alright to share how you feel not everyone is going to get it, like it or you for that matter.  Not everyday is a bed of roses, and those are few and far between when all you seem to be laying on is the thorns.

What ever emotion you feel after watching the video it is alright!  Alright that you feel that way, but make sure that you listen to the message that is really the essence of the video.

The message is..... -  it is alright to ask for help, we don't have to carry this world and its cares on our own.  My triggers I guess are around the emotional ties of food.  If you didn't finish your food then you wouldn't be able to leave the table, that's what we were told when we were little.  At an early age my son was a fussy eater and I thought I wasn't looking after him well enough because he wouldn't eat at set times.  The health visitor after I shared with her said just let him enjoy and play with his food, put paper down to catch any he decides to fling, he won't starve himself, and you can take the pressure off yourself.  Admitting that there was a problem and how I felt she was able to make a suggestion that helped so much, and was the first glimpse for me about the emotional ties that I had with food.

Come Full Circle

Mum began to store liquid in her mouth about 8 years ago, I coped,  but as it went on it got more difficult to deal with as you would have to physically remove it from her mouth which could be upsetting.  At one point the health visitors words about my son and not wanting to eat rang in my mind, and perhaps mum wasn't ready to eat, or maybe she didn't want what I was giving her.  Obviously there are the issues that might be about the dementia and the effects, but it was something that I couldn't control and perhaps she was trying to gain control and some independance.  If you don't finish your food you can't leave the table or have any pudding... what then, sometimes mum went all day with liquid in her mouth.  The emotions I began to feel were the same ones that I felt when my son wouldn't eat, that you failed at nurturing - what does that say about you now??? The Critic can be quite brutal, but that's for another post.

Asking for Help

There are people around you that are either waiting for you to ask them or for you to let go of the reigns and let them in to help you.  Though most see you 'seemingly cope' and feel that you have it worked out, don't know what to say to you or what help to offer.  It is alright to not have it all together, or worked out.  Dementia affects more than just the person living with it, but the wider community, and as a community if we all gave our support however small that is then families would feel less isolated and more connected and our elderly wouldn't be shut away in homes with no visitors.

I will be sharing more thoughts on my feelings over the coming weeks, in Art Journalling, video and blog, I hope you are blessed and share what you may be going through, how you deal with it, are there any creative activities that you use? You are not in this alone.

Think about the emotional attachments that you may have that are informing your current situation. 

*  What do you need to let go of?

*  What areas can you ask for help?

*  identify 2 people and ask

Stay blessed and be a blessing.