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.

Material Mondays - Jewel - Mixed media wall hanging -

Here is another wall hanging, so glad to get some more pieces done.  This piece was so fun to create with a combination of machine and hand stitching, giving it a quilted effect, and then finding the jewelry and beads to add to the piece, this part of creating is quite therapeutic...

Fabric Art wall hanging - Amanda Trought

The wall hanging has been made using cotton fabric that is then painted, stitched, and decorated with thread, beads and sequins.

 Willow stick and faux-leather cord attached.
The jewelry that is used has been recycled

Measures 4.5 x 9 inch

I am setting up an Etsy Store, so keep an eye out for it there!  Blessings