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.

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