Gratitude's and Celebrations - Prepare - Week 62

Prepare Week 62

Welcome to Gratitude’s and celebration post.  It is late and I should have posted it yesterday, but I guess as the title suggest I wasn't prepared.  I've been trying to get myself into a workable routine where I get a mountain of things done, but started watching a film last night and before that did a number of other activities, stuff kind of got in the way.

I know that I work much better when I am prepared and organised and so much gets done.  At the end of the day it depends what you want, and what you are trying to achieve that will determine just how much you do.

There are some things that you can’t prepare for and in my blog posts for the UBC challenge I have been writing about the unpredictability of dementia and the Carers Role.  I can plan for some things but not how it will affect my mum and the fallout and consequence of that.  We are thinking of making some big decisions over our lives and one of them is about going to live in Barbados, and what it will mean as family, how will we navigate through everything that will need to be done to facilitate it. 

I think about the facilities and wheelchair access that would be available for mum to live comfortably, wonder what type of support I would have as all my family are here in the UK.  We also have to think about Sekani and him going to university, not only getting a place but settling in a new environment, this all needs preparation and a lot of planning, and so many things seemingly out of my control. 

I am grateful and celebrate the peace that can come when we prepare and allow ourselves to go in new directions and experience different ways of living.

I look forward to the journey and hope you come along and join me. Why not start your own journal, keep it as simple or complex as you wish, but do something!

UBC - Day 25 - When Fear Strikes - Tips for Carers

Welcome to today's post, I have been stretching myself with writing these posts as I am still in some of the situations and the writing has not only been therapeutic but it is helping me to see different sides to my role as a carer.

Art from my Art Journals

When I look back I am amazed I have come this far, and that mum is a well as she can be.  I had many times when I wondered how long she actually had left and would start to stress over what needed to be done and how I felt about the matter.  Sometimes it can feels as if my whole life as been taken over by my role as her carer, and then when it stops there will be a big whole waiting to be filled.  

Fear of what is going to happen, what might happen and what could happen are all things that at some time go through your mind and you worry about.  For a long time I didn't want to ask for help as I thought I would be seen as weak and unable to cope 'I should be able to do this on my own' I thought, I was upset that I couldn't do it all, and then when I began to show the signs of stress the fear focused around whether the social workers would come and take mum and put her into a home against our wishes.  I worried about my own health and the long term affect of caring in isolation, If you don't have that support network and outlets that I talked about in previous posts, you are at risk yourself and your health could suffer.

Fear is something that can immobilize you and can cause you to spin round in despair, or it can launch you in the direction of taking action, you have to identify the source of the fear and then take steps so that the fear does not manipulate you.

I learnt over time to take things in my stride, deciding that there were going to be many things that were out of my control and the only thing that I could control was my response.  I can make decisions about what I do based on the situation presented in front of me.  If I acted out of fear then I would be tossed around from one decision to the next not knowing which solution would be for the best.  When I let go of the fear I was able to see the situation and options from more than one side.  So while you might not always able to make a difference to the consequence, you can be in control of how you get there though your actions and your own strengths and limitations.  

I constantly lean on my faith and pressing in, reach for the finish line.  I know that what presents itself isn't necessarily what it really looked like and the saying FEAR = False Expectations Appearing Real is so true.  If I show fear in my role as a carer and what I have to do, then I have to imagine what my mum must be feeling and then that is a whole different spiral.  The thing that I always come back to is looking at how I can express what I am feeling, learn to articulate it and by holding the mirror up to fear calling it out by its name and sending it on its way!

For now recognize that you will be afraid at times but identify where those fears come from and work through them, you are already doing a good job.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 24 - Support Network - Tips for Carers

Thank you for joining me for another day of Tips for Carers we welcome day 24.

Valerie and Laura help me celebrate my birthday

When caring for a loved one it is important to build a support network that you can call on, a group of people that can be there for you each with their different functions depending on how much time they can give.  No man is an island and not meant to go through this alone,  they say it takes a village to raise a child and I think that it takes a community to care for their elders.

Mum beats Sekani at table tennis

My good friend Valerie reminded me recently that friendship means that you can call on each other in the difficult times and as a friend if I needed her to sit with mum then she would gladly be there for me as should all friends and the feeling is mutual.  Both Valerie and Laura have been there for me and mum.

The problems arise when you are afraid to ask for help for someone to give you a break or a night to catch up with some sleep.  If you don't ask, you will never know, they might even say yes!  I think that generally most people want to help but don't know what to do, They look at you and think you have it all together, and you therefore just have to be specific about the help you need.  People cannot yet mind read and don't want to assume what type of help you need, which can sometimes be as simple as just sitting with your loved one for an hour to give you a break or stopping to have a coffee with you so that you can get some conversation.

Mum at a local church function

As you connect with a local carers group you will find a network of people that know what emotions and difficulties you go through in your caring role, and is a resource that you should make sure you use.  What are the kids doing? You can also get the children involved by sharing your memories with them and in turn get them to talk about their day or time at school with the one you are caring for, there may be something that you used to do as a child that the kids can relate to.  There are many activities that you can have ready for those who come round to visit and have some interaction with the one you are caring for, such as looking through photos, organising draws, and working together on a craft activity.  These types of activities are great for those times when people come to visit, and for some they need to feel that they are doing something practical when they visit.

Having that support network prevents feeling isolated for both you and the one you are caring for.

For now, think of 5 people friends, family and neighbors you can ask for assistance and who can be part of your support network.  If we all try and help each other we can bring back a sense of a community. 

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC Challege - Day 23 - Guess who's Coming to Dinner? - Tip for Carers

Guess Who's Coming to Dinner?

He came in and sidled his way into our home without making a sound, our weekly get-together's interrupted, the sound of children's laughter and mum telling them to get their feet off the sofa. 

In the beginning it was those little things that would make you stop and wonder, shuddering at the thought, we relaxed, everyone misplaces things don't they?   The unwanted visitor waited, he sat down and ever so quietly made himself comfortable as he gazed at mum and plotted his moves, feet now under the table, he had found a new home.

He proceeded to gouge his way through her thoughts, and her memories, each day feasting on the laughter of her yesterdays.  He drank up her conversations and put up his feet on her hopes and our dreams of tomorrow.  Her desires faded, the days turned into months and then to years, she fought back, tried to give him her marching orders, but always taking, he never put back things as he found them, wandering in her mind from room to room taking those abilities learnt from childhood.  

He snatched the names of her children and memories of our dad.  It had been 24 years since he was taken from us - the stories she used to tell....  'Mum, can you tell us the story of when you met, I so long to hear you share the excitement of meeting him, with a swing in your step and laughter in your voice......mum - do you still remember?

Finding it difficult to walk, she didn't want this, to be left feeling that she is a burden - how long will they care? Not knowing why you can't understand, listening as if behind a thickened glass door that won't break'.  Sometimes I'll admit and cry out 'I CAN'T DO THIS ANYMORE',  I am only human, you would too.

He sits in the corner, wiping his mouth with his sleeve thinking about his next course, the rest of her speech looks tasty, already had some for his starter, yet he is still not satisfied, it is not enough, when will it be enough?

Dementia is the unwanted guest in our house, the gatecrasher, giving us no choice in the matter.  We have all been affected and relate to it in different ways, trying to come together as a family to support the one we loved and make her life the best it can be, despite the situation.

For now, recognise your circumstances for what they are, make room for changes that will take place and celebrate the life you have before you.