Family and friends can be both incredibly helpful and incredibly unhelpful. They may not see the person as much as you do and may be slower to accept what is going on. They may put pressure on you to get it fixed by telling the person to stop their behaviour now and “pull yourself together” or put pressure on the vulnerable person themselves: “Look how you are worrying your poor Mother!”
Others, particularly siblings, can be very upset and jealous because of the attention given to the patient, especially when they are too young to really understand. They may need someone outside the situation to offer them extra time and support. Could they get support as a young Carer?
Honesty may be the best policy overall in talking to family and friends, but you may also have to face that some will simply not be able to cope with it, whereas you have to. The stigma associated with MH problems doesn’t help, along with the often held but completely wrong presumptions that MH issues are:
- A weakness of weak people that can be overcome with determination.
- Caused by poor parenting or lack of a ‘firm hand’.
You may have to be patient and wait for those who remain unconvinced or seek help among those who do understand. You may lose contact with those who cannot accept the situation, and come to rely on those that do offer you support.
Long term planning
You may not be able to support the cared-for person for the rest of their life, perhaps because you are older or because of your own health and wellbeing. This can be a real source of concern for Carers.
This is another reason to encourage maximum independence so the loss of your support results in as smooth a transition as possible. If the service user is very reliant on your support it is important that the MH services are given warning, if possible, that you are about to withdraw. They will step in and provide services up to and including residential care.
Whatever is offered will be dependent on their assessment at that time and is unlikely to be a firm offer arranged in advance. It will also depend on current policy and what resources are available. Discussing it in advance can give an opportunity to give your opinion so it is worth doing even if there are no firm plans made.
You may also find yourself no longer being a Carer at some stage for a variety of reasons. Despite the fact that it has probably been an exhausting and worrying experience, you may find it leaves a large gap in your life. If you feel this is a problem for you then counselling or support from a Carers’ Centre may be helpful. The end of a caring role can be very difficult to work through.
There is specialist help for those bereaved by suicide if this applies to you. GPs or Carers Centre should be able to refer you to counsellors or give information.
Wills: property and money
This is a tricky issue as inheriting even a small amount may cause chaos with means tested benefits. It might also result in a spending spree with wasted money, large amounts of alcohol, or unhelpful interest from a sudden group of new ‘friends’.
If you fear any unpleasant consequences but want the cared-for person to have some benefit it would be reassuring to plan ahead. Both property and money can be left in trust and when the person is vulnerable and may not manage well (even if they are officially not assessed as lacking capacity) a discretionary trust is recommended. This allows finances and property to be managed by trustees who will oversee all expenditure. A regular allowance can be fixed at a level which has minimum impact on any benefits and any occasional requests or property maintenance left to the trustees. Often these are siblings of the cared for person.
It is important to consider the impact of the trust terms at a personal level. The relationship between the cared-for person and the trustees may be under strain if money issues get in the way and tensions arise. Solicitors will act as trustees, which avoids this problem but inevitably means paying a percentage of the money to them on an annual basis.