Level of care needed
It’s important to be realistic about what the person with MS needs, and what the Care Giver can provide in terms of time, kinds of care, and financial responsibility. This is more easily said than done. Making changes — whether small or large — can be enormously difficult.
Coming to terms with chronic illness and disability takes time and strength. Rational decision making can be side-tracked by anger, guilt, grief, confusion, or shame. Care Givers can benefit from speaking with a therapist, counsellor, or other person outside the situation to get a clearer perspective. Don’t be afraid to ask for help. The cost of not asking for help may be very high for everyone involved. Your local MS Regional Office may be able to recommend an approved counsellor. Family Carers Ireland offers free one-to-one counselling and personal advocacy services to family carers.
People with a significant level of disability can live at home successfully. There are usually a number of solutions to practical problems. For example, someone who cannot transfer from wheelchair to bed or bath can be moved using the proper kind of lift or hoist.
Level of Care Considerations:
Family and friends can be crucial members in a network of assistance but Care Givers often report that it’s hard to actually get their help. The first step is to tell friends and family that their help is needed and welcomed. Friends often worry that offering help might seem intrusive, especially when it looks as if things are being handled well.
Keep a list of projects, tasks, and services that friends could do. Then, the next time someone offers to help in some way, it will be easy to oblige them. Give people specific, time-limited tasks. Asking a friend or relative to come by on a Saturday for 3 hours in the afternoon so the Care Giver can do other things is going to be more successful than asking them to stop by when they have a moment
The ability to make choices is a basic freedom, so provide choices whenever possible: from where to live to which cereals to eat at breakfast to what to wear. Choices enable us to express ourselves. If the options of the person being cared for have become more limited, through ill health, financial constraints, or social losses, you have to work harder to provide choices.
Always remember that the person you are caring for is an individual human being with feelings. Care Givers can assume the role of decision maker when the person they are caring for is not fully capable of making their own decisions. If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, then encourage him or her to do so. Helping your loved one maintain the level of independence they are capable of will result in better equality of decision making within the caring relationship.
In December 2015, the Government passed the Assisted Decision-Making (Capacity) Act. In April 2023, this Act came in to effect. It provides a legal framework for supported decision making and allows people to make legal agreements on how they wish to be supported to make decisions regarding their welfare, property and other affairs. It allows people to plan for a time when they may not have decision-making capacity for arrangements such advanced healthcare directives and enduring power of attorney.
A routine may suit some care situations, by establishing regular patterns of care with flexibility available as needed. This may provide an added sense of security to a person with a neurological disorder. Create a schedule for meals and activities according to the wishes of the person being cared for, and make sure to allow for flexibility and spontaneity so that the person being cared for can direct the decision making at any given time.
Make household day-to-day activities as simple as possible. This will afford you the extra time needed to support the person you are caring for with their personal care needs .
Many people find it emotionally difficult to have to depend on others, and many worry about being a burden. So, with all these mixed feelings, your loved one will need to be reassured that you are available when you say you are, be sure not to over promise what you can’t deliver. Remember you need time for yourself to refresh your own energy, factor this in when planning your time.
It is also important to remember that your loved one needs you, even if he or she doesn’t say so. Sometimes the frustration of dealing with a condition like MS can be so challenging on the individual that they may seem solely focussed on what is directly happening to them physically and emotionally.
As early on as possible in the care giving relationship establish a time for looking at how everyone is coping with the MS and the changes it has brought to all involved. Make a practice of setting goals for all involved to include taking breaks and holidays together or separately.
Take steps to make your home as safe as possible. This may include locking up or removing medications and dangerous chemicals in your home, eliminating small rugs, clutter and extra furniture, and ensuring smoke detectors are in working order. It may also include making home modifications if needed, such as installing safety railings, gates across stairways, and other assistance devices or equipment.
It is very important for the person with a chronic illness to maintain good community links and continue to have a fully inclusive social programme of their choice. To achieve this can be through planned activities which can enhance a person’s sense of dignity and self-worth by giving purpose and meaning to life, as well as maintaining physical and mental capabilities.
Communicate appropriately at the level of the person you are caring for. Keep your communication simple and calm. Always speak clearly, slowly and face to face. Be aware of your body language. Make sure you have the person’s attention before speaking.
Ensure medications are taken regularly and as directed. Monitoring response and side effects can also be helpful. Long-term adherence to some of the treatments can be critical for positive outcomes.
Family Carers Ireland and Care Alliance Ireland have information on a range of training courses available for family carers. Some of the courses are delivered in person and others can be completed online. There is also a range of booklets and other resources available for care givers.