Sometimes you have to stop, stop what you are doing and listen. What is it that you can hear around you in your environment. What are the beliefs that you hold about your situation or circumstances? Check out the video below for some additional insights.
Change Your Perspective
As I listen to the sounds in my enviroment I think about what I should be grateful for, and the things that I constantly take for granted. When I listen to the sounds one of my favorite times of year is when the spring is underway and the birds seem to be singing extra loud and it is lovely. I also like seeing the buds, those first flowers emerging from the ground or on the trees - new life emerging with the promise of fruit. It is in those simple moments that clarity can be found. We stop all the chatter and take stock of who we are and what we feel. As the dementia developed in my mother I questioned the old ways of doing things that you still see in some care homes today where people are sat in a circle in chairs they can't get out of. I am not saying all care homes, there has been a lot of changes over the years. But people are generally of the opinion that when a person is living with dementia they become like a cabbage! (and I have heard a person talk about their own mother in this way) I also heard a massage therapist while she was massaging a residents foot that it didn't really help them because they couldn't respond. I was flabbergasted on both occasions and told both parties about all the research done that would contradict their claims. There is still a lot of stigma associated with the disease and people tend to keep it hushed behind closed doors.
Mum used to love art and still appreciates the effects of colour
What if you were suddenly unable to do anything for yourself speak, or move unaided, how would you want to be treated? When you put the shoe on the other foot and imagine what what you have the ability to do now, to how you would feel if people treated you like you didn't exist because of their limited view of the benefits that you get from the interaction you might look differently. We have to change our perspectives to many things, and shine some new light on old beliefs and looking with a set of new eyes. The quote that says 'you can't do what you have always done and expect to get different results', that would be madness - wouldn't it, but we sometimes act as if it were so. The long and the short of it is this is not a rehearsal, we don't get a retake or do-over of our time wasted, so learn to appreciate those things that you have been taking for granted. Look at how far you have come, celebrate those achievements and where you currently are at the moment, change what you can change as you step into what tomorrow will bring you.
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!
If you want to support me as I create Arts and Health resources, videos and tutorials for free then come over to my Patreon Page, and see how you can benefit from your support.
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
Check out the Podcast
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!
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.
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.
Realityarts - Creativity Book Shop - Some really great titles for you to dive in
Creative Resources
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