Post No49...Dementia care and necessary change - collaboration with Sylvia Stock

Introduction

When caring for someone living with dementia, change is sadly inevitable, both for the person, but also for the family. The post below considers what necessary change might look like for families, and the emotional impact it can bring.

Taking Care of the Emotional Impact of Necessary Change – By Sylvia Stock

There are two players in this latest saga of Dementia Care –

- The person with Dementia.

- The ones involved in the caring of them.

The one on their journey since diagnosis may well be totally unaware of the full impact it is having on those caring for them, while the carer is close to emotional and physical burnout.

There are often family emotional responses that arise as well. Everyone seeks the very best for their loved one whilst battling with those sneaky inner emotional responses to the situation that is faced. Dreading making the decision they know they must.

Fear of the unknown is very real as “job’s comforters” relay the horror stories of care homes.

Anxiety suddenly rears it’s ugly head as deep down you know that 24/7 care in an appropriate care home setting is the key to dealing with symptoms manifesting and to prevent the total emotional burnout for those caring mentioned earlier.

When caring for my own husband with Young Onset Alzheimer’s Disease I had to come to terms with his having 24/7 care when my own plan of “doing it at home till the end” was not working out.

We cannot avoid decisions in life and walk in a denial “It will be better tomorrow” mindset.

Suppose there was a simple emotional support tool to help in decision making? A tool to assist in the prevention of burnout?

Dementia Whisperer – born from both professional and personal experience from Sylvia has developed the –

This was developed following her own “Dementia’s” journey and a desire to help others with their carer journey decision making.

Available from Dementia Whisperer, this can be yours for any crisis decisions life brings up!

What does necessary change look like? By Chris Roby

When caring for a loved one living with dementia, necessary change can take many different forms. One important thing to remember is that the person, due to dementia, will change over time, meaning the same approach that worked a few months ago might not work in the present or in the future.

Being responsive to change is therefore very important, albeit not always easy. Many of us are resistant to change, but this can sometimes mean our caring practices become outdated as the person progresses through their journey with dementia.

Sadly, dementia changes almost every aspect of a person; their mood, their behaviour, their communication, their memory, we can only imagine what this must be like for a loved one who is caring for the person. All these changes will cause emotional upset and stress to the family, which sits on top of a busy schedule of caring for the person on a daily basis.

As dementia changes a person slowly over time, necessary change will be more about adapting to the new behaviours or challenges the person faces, making small changes along the way. This could take a number of forms, such as finding a new memory café or social group that supports others also living with dementia. It could also take the form of adding domiciliary visits to support the carer, or perhaps respite care in a care home to prevent carer burnout.

When change is happening slowly, it is wise to consider where it is going and plan ahead. For example, utilising respite care is a good idea to prevent carer burnout, but it can also be seen as a care home trial, to see how the person settles. It is a good idea therefore to try and use the same care home for respite that you would also consider for long term care, particularly if you are happy with the outcome of the respite stay.

Change, however, can sometimes happen very quickly, and in some cases can be quite a severe change. This is different from a slower change over time, because it causes huge uncertainty in a chaotic or crisis environment. This type of change takes a more hard-hitting impact on the family due to its sudden and severe nature, and the family may still be required to logically try and think about the next steps regarding care for the person, which might be new to them.

Necessary change in this format is therefore also different to change over time. Often the result of a severe stroke, a person may develop dementia, or it becomes exacerbated, changing also their mobility along with their cognition. Trying to understand what to do in this instance, whilst grieving, is very challenging and overwhelming. The main change for families in these instances is not only the person themselves, but the ongoing accommodation / care of the person, which may HAVE to be done in a nursing home.

Conclusion

Necessary change is important because whether the change is fast or slow; with dementia, things are going to change. Being responsive to change, and accepting, is a good thing, as is having a plan for future changes although this can sometimes be hard to predict.

If change happens suddenly, the best a family can do is to try and come through the chaotic / crisis environment, both mentally and physically, and from there try to formulate a plan for ongoing care. This of course is much harder to plan for, because it happens unexpectantly.

For anyone who is in the position of needing additional support, you can send me an email to book a consultation, or look through some of the other useful content on both The Care Whisperer, and The Dementia Whisperer websites.