UBC Day 29 - Long Term Plans, Tips for Carers

Thinking about the future – Long term plans

Every now and then, I think about what is going to happen to mum as the dementia worsens.  You can’t help think about it, and at some stage you have to address it.   I wonder how long she has with us, ashamed at the very thought and feeling guilty thinking about myself and how long I would be in this role.  I think about the other ailments that silent creep up and one day we find out that we have to make adjustments for them as well. 

Adaptations

I recently moved mum into a flat that has been adapted for someone who uses a wheelchair, we were struggling at her old home with the bathroom and getting in and out with her, and the new flat has a wet room with shower so it has eased the stress that we used to have in the morning.  Additionally with the wheelchair we were having carry it up and down the stairs every day, and with the new flat there is a lift.  I have been mindful to start to anticipate some of her needs that will arise.  Rather than wait for things to happen, I have tried to put things in place before they are needed, but also I have been trying to maintain mums health by giving her nutrient rich foods, she has been enjoying the smoothies that I have made from the nutri bullet.

That said, some hard questions will need to be answered even asked and there are things that we are going to have to face.  It helps if you can where possible put things in place that will benefit your loved one.  With mum, using a wheel chair doesn't mean that we don’t encourage her to walk, and we are trying to maintain her health as much as possible.  For some, as their loved ones get sicker they are faced with 

the question ‘do we put them into a home’  I have thought about it but knowing what I’ve seen from exposes of homes and what you have read in the paper, I don’t think that mum would survive longer than 6 months if that.  When mum went into a respite home while I was away on holiday she walked in when I took her in and had to have a wheel chair out, she could barely hold herself up and that was just after a 2 week stay.  I am sure not all homes have the same effect on its clients, but that is my experience.

 

Essentially you have to start to think about how their illness will progress and what will happen if you were no longer able to physically care for your loved one.  This is where the support network, family and friends come in.  What you do today will have an impact on the outcome of tomorrow.

For now take a moment to think about your current situation, and what additional things could be put in place to further support you in the long term before they happen.

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 28 - Each Day is a Gift - Make it special, Tips for Carers

Make each day special, each day is a gift

Each and every day that we can get up and breathe in fresh air, see another sunrise and sunset is special, as well as connecting with loved ones and exploring the life we have been given this is special.  Whatever our current circumstances, we are able to enjoy at least one thing in our lives, and even if you are not grateful for what you currently have remember that there is always someone worse off than you.

When you give it some thought and think about what you do have you will see that there is someone who doesn't have all the resources that you have or the opportunities and probably a host of other things, and if you go wider, there are a large proportion of the world that don’t have access to clean running water, or food or a place to lay their head.  They don’t have and will never have most of the other things that you have and will on a daily basis take for granted and even get complacent over.  Yet those that do not have are making the most of what they do have, they are struggling and living from day to day, and we have a responsibility to help and impact the lives of so many around the world in the simplest of ways – but that is for another post. 

I often worry that mum is hating her life right now, thinking about all the things that she use to do that she now can’t do.  At times I find myself going into automatic mode when helping her to do something, of course I will help her cause she can’t do it for herself, of course I will because she is my mum, but then in the midst of me helping her do something you would expect to do yourself she says ‘Thank you’.

She says it with gratitude, she says it because she is grateful for the help, and I think even more so grateful for being alive and able to enjoy what may seem limited to others, but to her it’s a life worth living.  She may not feel that way all the time, who does, but generally she has found a way to still smile and laugh at life.  There are still things that make her chuckle, and what I try not to forget is how precious this moment is.  This day that we have been given is unique and I have the choice to celebrate it and try and be all that I can be today, for tomorrow is another day.  I can choose to be present in my life or I can choose to worry about all the things that are not happening or that I do not have. 

I choose to bring joy into my home and see the wonders that are around me, and the opportunity to be able to make a difference today.

For now think about those little things that bring joy into your home.  Look at the gifts that you have been blessed with among what look like ashes and celebrate those gifts.

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 27, Don't Sweat the Small Stuff (keeping your perspective) - Tips for Carers

Don’t sweat the small stuff, keep your perspective

Throughout the weeks we have been looking at different areas of the carer’s role and things you can do to make it work better for your health and well-being, I hope that you have found some of the ideas helpful and it would be great to hear what you are putting into practice in your own life.

Where has the time gone?

‘If it is not broke, then don’t fix it’ or ‘don’t try to reinvent the wheel’ are two sayings that I remind myself of daily because there are so many things out of our control and that can send you on a spiral of self-doubt, when you finally come back to yourself and out of the rabbit hole you find that you’ve missed out on a large chunk of your life.

In your caring role you will also come across situations and events that arise and impact negatively on your role, or you might meet people who are difficult and unhelpful, you have got to keep going. The bureaucracy that you will face as a carer can be hard, but for every 2 unhelpful people, there is someone who genuinely wants to be of assistance or give you the correct information. I found that many times over the years and at times I just had to come at it from a different point of view, wait a few days and then approach it again.

Dealing with the day to day

Even dealing with the day to day things could be an issue where your loved one refuses to do something quite simple like change their clothes for bed at night time. If you have been used to doing things in a set way then for them to decided not to change their clothes can be an issue. When it happened with my mum she just point blankly refused to change into her night clothes and no cajoling or persuading would make her change her might. I began to get upset as this was totally unheard of - sleeping in your day clothes! I couldn’t work out why she would do this to me. 

Then something clicked, it had meant more to me than it did to her, the clothes were just clothes to her, she felt comfortable in the clothes she had on and didn’t want to take them off for her it represented making her own decisions and being independent, and here was her daughter ordering her about in her own home. I realised that even though I was trying and keep to a system, changing the clothes and doing things that she normally would do helped me to feel that we were in control of dementia, and represented order to me, dementia is not a disease of order. 

Taking a step back

I had to step back and stop stressing both her and myself out at night and just let her sleep in the clothes if she wished knowing that she would be changing her clothes come morning. This gave a sense of peace and it was no longer an issue, but it also meant that possible changes in the way she perceived things were taking place and there would be other things that would come up that needed to be dealt with from a different perspective, I had to let it go of how I thought things should go, and make room for the things that really mattered.

For now what areas of your life and your role as a carer could be rearrange to remove the stress that can sometimes crop up and what can you let go of?

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 26 - Dealing with the loss - Tips for Carers

Dealing with the Loss

Welcome to day 26, How do you or have you dealt with loss, and what understanding can come from it?  

When we lose a loved one, it is hard to believe that they are gone, they were there one day and then the next they are not.  They go suddenly or they could go after having been ill for a while and you watch them drift away from you.  I experienced both types, an emptiness resides within you and there isn't a day that goes by when you don’t think of them, you go over thoughts, things you could have said, memories, laughter, I would trade it for another day spent with them.

In the space of 3 years, I lost my best friend, Barbara to a brain hemorrhage, and my brother Robert to Myeloma Cancer.  I often feel that in both relationships with them there were so many things that I took for granted never giving a thought that I would possibly go through days like this.

At times I get that feeling of loss when I am with my mum, because she no longer quite remembers who I am.  She says my name as if she is referring to someone else that she knows and never addresses me as Amanda.  She can’t tell me of her memories of me as a child or the motherhood pearls of wisdom gained through experience.  This loss is different isn't it, she is still here, still breathing, interacting in her own way.

As I watched videos of mum in the early days of the dementia, I see that she was be so outgoing – much more than when we were children and we gained a different side to her personality.  She was always up for doing something new and had an adventurous spirit.  She laughed more, danced more and during this time she talked a lot about dad, sharing those tales of their first meeting.  Mum helped me deal with the loss of my dad passing even after all those years, and she talked about him all the time, talking about where and when they met and her eyes would light up as she told the story, it was great to see, this kept the memories alive and helped to focus on the good times. I realized that I took her for granted even then, thinking that she would never get any worse not seeing the corners that she was turning in her mind as the dementia took hold.

The biggest lesson that I learn about loss is that you must make the most of all the relationships you have, don’t wait another day to tell someone that you love them, or call someone up that you were thinking about.  We never know when we will lose those nearest and dearest to us and we have to make the most of them while they are around.

For now, recognize that there will be many stages that you will need to deal with and you need to take it one day at a time valuing each and every moment.  Don’t take any of your relationships for granted.

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 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.

UBC - Day 22 - Caring Faith - Tips for Carers

Smile

Welcome to the Ultimate Blog Challenge for today, we are over half way through and I hope that some of the tips that I have shared have been helpful to you.

Faith

My faith, my belief has been the one thing that is constant in my life, it is the thing that lifts me up when I am down, and ministers to me when I cannot see a way.  Because of my faith and my spiritual walk I find the strength to do what I do today.  

When I feel that there is no hope, my faith and belief in God reminds me that  God not only loves me for who I am but he gives me strength when I have had a difficult time with mum and she doesn't want to go to bed to sleep.  He reminds me that when I was ill mum would stay up with me and tend to my needs.  When mum won't eat and I get frustrated cause of the effort it takes God reminds me to let go of the emotional ties to food that I have and when mum is ready to eat she will.

My faith helped me to see mums dementia from her perspective, to constantly ask myself how she must be feeling and to give her space and time to express what she needs and to challenge myself.  When I work to her time there is less need to get stressed about how long it takes or whether or not she wants to do something.

I learnt through faith to be patient, to love unconditionally to be humble, dementia and its affects on lives has humbled me.  It has affected all of our lives in one way or another and I don't take my life for granted and i don't take her life for granted.  Mum can still live a full of grace, peace joy and love.

My faith reminds me that I have to make the most of everything that mum can do and how she is feeling. She still feels emotions though not always able to express how she  is feeling her life is precious in Gods eyes.  As I spend time in his word I am reminded that he gives me strength each and every day.  He will never leave or forsake me.

Art Journal Page

For now, think about your spiritual walk, we do not go through this alone and God will guide you through if you let him.  He will walk by your side in the good times and carry and comfort you in the hard times.  How has your faith comforted you?

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 21 - Once a Man, Twice and Child - Tips for Carers

Welcome to the Ultimate Blog Challenge, for today.

Once a Man and Twice a Child

I never understood the saying until my dad got ill.  He had become bed-bound and needed me to help him change his clothes.  He was embarrassed and was apologetic, it was awkward, and at the time I tried to reassure him that it was alright.  He was my dad, and he needed my help, no questions asked, but I could never imagine myself doing this on a regular basis. 

Kenneth Lloyd Trought - A shining star

I wasn't around much for mum when she looked after dad and for many years after his death I surrounded myself with guilt of what I could and should have done.  But at the end of the day the guilt will only spin you round in circles and immobilize you, which doesn't help anyone, but I know how hard it is to shake.  Many find themselves in the role of a carer quite by chance, there is no else to take up the role, and it is here more than ever that we have to give a thought to how we would want to be treated if ever we found ourselves in the role of the cared for.

So many memories...

I am looking after my mum whilst my heart yearns for a mothers wisdom and advice, yet it is often met with silence, that is the hardest thing to deal with sometimes.  I think back to the care and nurturing that she gave unconditionally to us as children, and her gentle nature.  Not everyone has the love of a nurturing parent that I know, and motherhood is not an easy road to walk down.  

I care for her now as if she is my child, anticipating her needs and emotions as best I can.  There is no room for guilt about what she cannot do or my perceived limitations as her daughter, though I am not saying that from time to time the thought does run through my mind.  I remind myself that if the tables were turned she would do the same for me.

For now, recognise that you can only do your best in the situation, don't beat yourself up but find ways to celebrate their life and what they can do today.

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 20 - Being Practical - Tips for Carers

Welcome to the Ultimate Blog Challenge for today.  Rome wasn't built in a day and some times it can take a while to sort out and organise your own household, let alone another, so today's tip is about being practical.  

Practicalities

Being a carer brings with it a lot of emotional stuff, but to deal with the situation you are going to have to look at what you do and see it from a practical side, and get what needs to be done first then think about how it makes you feel. Sometimes you need to work with what you have as very often the thing that we think we need is right in front of our faces.  No one can be on call 24 hours a day, so if you can create some systems and schedules it will help you keep a track of things. 

Asking for Help

There is only so much you can do, so asking for help is something that you need to get used to.  Asking for help is not a sign of weakness, it is the thing that can enable you to handle your role in a more effective way, and keep you sane at the same time.  I found what helped me was having set things that could be done depending on the situation, grouping activities that could be done at one time, this also called me to be flexible as nothing was set in stone.  I try and think about what I need to do and what needs to be done, if you try and do too much you will burn yourself out.

  

Saving time

I try and make sure that I can have enough things in place and when I am feeling full of energy I can do more, but when I am tired, I can make adjustments as I go on.  If you have access to a computer you can try and automate things that you need to do like paying bills, prescriptions, even doing some of the heavy shopping online, and try and save some much needed time.   

It is important to keep the one that you are caring for as active and mobile as possible, this enables them to remain independent.  You might find that doing things yourself might be quicker, but if you let them get involved it not only impacts on their self esteem, and this will help you if they feel that they are contributing.  My aim with my mum is to keep her as mobile and active as possible and constantly encourage her to move about where she can, to exercise dispute having to use a wheel chair, keeping her stimulated and engaged helps me in the long run because it slows down the decline and in turn keeps her as independent as possible.

For now try and identify the regular things that you do that can be organised to take up less time, don't feel bad about asking for help, the answer could be 'yes' or you can organise some of the repetitive activities so it fits into a workable schedule.

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 19 - Tell Your Own Story - Tips for Carers

Welcome to today's Ultimate Blog Challenge get ready to tell your story!

We all have a story to tell, it doesn't matter who you are or what experience you have, your story is important and it needs to be told.

Mum shares her memories as a child

As a mixed media artist, I find that I use my journals a lot to tell aspects of my story or to express how I may be feeling at a particular moment.  My images, paintings and journal entries don't always have to have words.  I keep a journal just for writing as well, and first thing in the morning I spend time just writing, 3 pages or more of words whenever I can, allowing them to flow out, without censoring or hindering.

When I create a character or painting I don't start out always knowing what I want to paint, and use their gaze, smile and expression to tell the stories of pain, joy, fear and love.

I guess I also use this blog as a way to tell my story and share my journey, hoping that if only one person finds comfort or encouragement then its worth it.  I also share my story as a means of reflection.  When I can't find the words  to express how I feel, telling it in a story form can make it easier, and it is all part of the overall process.

Sharing your story reminds you of who you are.  We can often be buried under all the labels, wife, mother carer, and you can forget just who you were because that person hasn't been visible for so very long, lost in a sea of just getting by.

For now, get yourself a note book or journal and start writing and or drawing about how you are feeling, lessons learnt or advice for someone who might just be just stepping into your shoes.  Share your story with someone else you could be the inspiration that they have been praying for. 

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