Post No44…Dementia care, the emotional rollercoaster - Collaboration with Sylvia Stock

Introduction

The previous post in this series about dementia care is about reasons why a person with dementia may have to leave a care home, mainly due to financial reasons or changing care needs. This post takes it back a few stages, and focuses on some of the many emotions that carers will face when dealing with dementia care.

I am also very excited to say that this post represents the start of collaborative journey with Sylvia Stock, Master Coach, and author of The Dementia Whisperer. Between us, we plan to cover both the practical elements but also delve into the emotional side to better support our readers who maybe caring for someone living with dementia.

So, starting with Sylvia…

The Emotional Roller Coaster Ride Continues – Sylvia Stock

On my! Suddenly the Dementia/Alzheimer’s journey is taking a major shift! All sorts of emotions rise as you look for a suitable 24/7 care environment.

· Guilt because you cannot continue care and support at home.

· Anxiety associated with making the right choice.

· Grief because you know there is no turning back as symptoms grow worse.

· Anger inside you, because maybe you made a wrong choice and have to move your loved one to a more suitable Care Home

· Despair at the thought of what the future holds for your loved one and the family involved in their care.

· Frustration as family members have different viewpoints around ongoing care.

When caring for a loved one, the moment that journey begins, so does an ongoing grief journey that has to be faced and lived through. You cannot avoid it. Neither can you try to keep a “stiff upper lip” as we Brits have been historically taught to do.

Emotions need to be acknowledged, expressed along with seeking sound advice with your decision making.

Whatever decision you make, you made it with the information you had at the time. Own it and with no regrets, face whatever lies ahead, because further choices will need facing as time goes on.

Is it Right to Feel This Way? – Chris Roby

When speaking with family members, most of them are feeling at least one but probably several of these emotions, sometimes all together at the same time. The feelings of guilt are present in almost all people who are in this position, normally because they are feeling out of control of the situation as their loved one's dementia worsens.

People also tend to feel guilt because they may have said they would never put their loved one in a care home, or feel they have failed their loved one, but this is often not in any way the fault of the carer, it is the disease that is causing it.

From the many people I have spoken to about the grieving process, and through personal experience, I believe the grieving process for dementia care is cruel in its longevity. You grieve when you suspect something might be wrong, you grieve at the diagnosis, you grieve as their personality slowly slips away, you grieve choosing a care home, and you grieve when they pass away. Not a very nice road to be on really…

What I will say however, (to follow on from the previous paragraphs melancholy) is that I believe people can live well with dementia, in the earlier stages of it. My advice would be to get a diagnosis and spend as much time together as possible whilst you can. There is growing evidence that by stimulating our brains we can reform connections / re-wire, so keeping mentally busy, socially active and by having your hearing assessed (so you can converse) you may be able to prolong these ‘better times’.

Getting a diagnosis may also help to plan ahead a little bit, because avoiding a crisis in any situation with dementia care is always advisable. This could be by having respite care in a care home, so the carer can rest, or by utilising memory cafes and other re-sources from charities like the Alzheimer’s Society. However, a crisis can sometime be unexpected and form itself very quickly, so it might be worth checking out Sylvia’s crisis management tool below:

How about having a Crisis Management tool to hand for decisions?

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

Conclusion

To conclude is to answer the question ‘is it right to feel this way?’ – the short answer is yes, it is alright to feel guilt, anxiety, grief, and anger, you would not be human if you didn’t.

The important thing is to make sure you take care of yourself as the carer, to spend as much time as you can with your loved one if they have dementia, and to ask for help, when you need it, along the way.

Thank you for taking the time to read my blog, The Care Whisperer, talking about care in a way that no one else is. If you would like to be made aware of future content, please hit the subscribe button and I’ll look forward to seeing you next time