This week is Carers Week, an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.
The subject of support for carers is one that I feel needs immediate investment and greater recognition of how important carers are to the quality of life for those with a terminal diagnosis.
I have written in the past to voice my concerns regarding the lack of appropriate support in this area and continue to feel that this is an extremely important issue.
In brief, I feel that most of the support services currently available just do not meet the needs of many of the people who provide supportive care.
An example of this is that of my husband Jonathan. The current services involving “support groups” are just not his style and to be honest are not really that useful for many people, especially the male of the species.
Men are just not comfortable baring all within a public arena and my husband finds the thought of this simply terrifying.
Although he is clearly finding my diagnosis very difficult he doesn’t appear to want to talk about it or share his feelings with anyone and seems to be putting the problem in a box in his head so that he can carry on as normally as possible. This has always been his way of dealing with things and so is the one he has employed as a coping mechanism.
There is a need for information, as well as support
What he seems to need is to feel he is doing something to help and so requires knowledge to allow him to do this.
There doesn’t currently seem to be anywhere he feels he can go to get this information or anyone he feels comfortable enough to ask.
This is a serious gap in service and one which needs to be investigated. Any new services developed will need to consider how those who are both working and caring are able to gain access and these may need to be provided outside traditional working hours.
I also do wonder what kind of support a relative or friend of someone who is terminally ill really needs?
Much of what is currently available seems based upon what is believed to be needed but I challenge whether this is what is actually required.
It is clearly extremely hard to watch someone who is close face their own demise and to provide them with both emotional and physical support. Supporting a loved one in this way is emotionally difficult not least because it is sure to change the basis of any relationship.
Concerns for the future
My concerns for the future involve worrying about what will happen to me when I fail physically due to either disease or treatment side effects and the pressures this will inevitably place on my nearest and dearest.
I do not want my husband to have to provide me with any personal care. I don’t see this as his role as I would be unable to maintain my dignity and our relationship under those circumstances. This is something he and I have discussed and agree upon.
However I really worry that family are made to feel that they have to offer all of this support and are not in any way assessed for their ability to provide what can be extremely difficult emotional and personal care.
I feel we need to accept that not everybody is able to do this and it may have a very negative effect on both the dying person and their failing carer.
People now live with dying for much longer periods than we did historically and so the stress of living with and supporting somebody who is terminally ill is greater than ever.
This is also not helped by the fact that many health services are now so disjointed that a lot of responsibility for ensuring a patient receives appropriate care lies with the patient themselves or their representative.
This adds additional stress to an already difficult situation.
So what can be done to help?
I feel a good starting point would be support and advice for those living with someone who is dying at their diagnosis. I have previously written about how I believe that the terminally ill need support from palliative care early on to help regain some normality at an incredibly stressful time.
I also feel it would be of benefit for the carers and family to be given information regarding what the ‘terminal’ tag means, the treatments that will be used and problems they may need to face in the future.
Advice on practical issues surrounding finances, services available, who to ask for help and how to emotionally support their loved ones would really help both the carer and the patient in both the short and longer term.
Earlier contact with palliative care services would hopefully take some of the fear out of the unknown and also allow everyone to start to feel comfortable with palliative and hospice care services.
As treatments for various diseases like cancer improve there will be increasing numbers of people needing to live with a limited life expectancy and they will need support.
A comprehensive review of what carers feel they need to help them to provide this is a must and new services will need to be provided in both a timely and innovative manner to minimise costs.
Hopefully government will be helped to recognise the important contribution carers are making to healthcare and will invest in providing the support services these people so desperately need.
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