One of the most difficult (and often underestimated) life events, is when someone with dementia needs to move into a care home. It can be an anxious and traumatic time. Perhaps this is your husband, wife, mother, father who, for many different reasons, is no longer able to live at home.
For the person with dementia, the decision to move into a care home isn’t one usually made by them. The decision usually falls to family, carers or those closest to them. The weight and range of emotions this carries is often unexpected and leaves carers feeling unprepared. Certainly, the transition to permanent 24-hour care doesn’t happen overnight. Usually, there will have been challenges over a period of time.
Considerations when making the decision
The feeling of “loss” is experienced by carers in its many forms. This could be due to losing the person you care for, feelings of failure or guilt or the loss of role or purpose. This can overwhelm your thoughts and make it harder to make a decision to move the person you look after into a care home. Carers will say it is one of the hardest decisions they ever have to make.
When someone lacks mental capacity, decisions should always be made in their best interests (and be the least restrictive option). As we know, individuals are different, unique and complex, as are relationships. Decisions are the same. Each decision is unique and needs to be made according to the information that you have as individuals – in the best interests of the person you look after, as well as you.
How many of us actually record our advanced decisions or wishes? What is best for one, may not actually be right for another. The least restrictive will always be for the person to remain in their own home, but what if this home has become a distressing place for them, e.g. due to delirium or disorientation?
As professionals, when considering the best option, we always need to understand the history of the person with dementia and the immediate situation. But equally important is how the carer is feeling and coping. Without an available or capable carer, there is often a point when there is no other alternative for a person with dementia than to be placed in a 24-hour care home.
Financial concerns
Financially, the cost of care home placements can be a heart-breaking issue in itself. The person needing care may have worked all their lives, wanting to leave a legacy behind for their children. It’s a decision that no-one wishes to face. To lose a substantial amount of savings, or estate, to care home costs is very difficult to come to terms with.
Tension can rise within families whilst they try to balance out what is in the best interest of the person with dementia and the financial impact. Perhaps one family member feels that they want to continue caring, whilst another is now unable to continue to assist. What can often echo in a carer’s mind are the words: “Never put me in a care home” (or often harder statements!). There is an option to move the decision to a third party – allowing a legal decision to be made via the Court of Protection.
The reality of community care is that there is under-funding, particularly in dementia care. Where services struggled pre-pandemic, they are now crippled by a system already tarnished. The social care workforce is on its knees and devastatingly, this filters through to have an effect on the person with dementia and those who look after them.
The last resort
Despite all of this, family carers keep going, often because it feels as if there is simply no alternative. So, reaching the decision that you can no longer do this can be a last resort for so many – the breaking point. As a carer it is then time to look after yourself, to know that the person you care for is looked after and safe and now you need to find ways of moving forward step-by-step.
Please know that there is support at this time, that once the transition into care has happened, you are not forgotten.
More support online
The Live Online Learning series: ‘Transitions into Care’ explores these issues in more depth. Led by registered health and care professionals, the online webinars support carers through this difficult life event. These sessions help family carers to feel as prepared and supported as possible during this time. There will be time to connect with other carers as well as the professionals in a supportive and protected environment. Please register your interest for the next course.
By Katy Evans, an experienced social worker based in South Wales with a background in local authority and adult social care.