Multiple Sclerosis: friends & family experiences

MS: thoughts about the future

None of us can tell what is going to happen in our future, however carefully we plan it, but when people are living with a long-term, progressive condition the future sometimes has a special kind of unpredictability. Living alongside somebody with a condition that can be physically debilitating sometimes makes even everyday life uncertain. In these circumstances the longer term future can look still more unknown. 

People we spoke to sometimes talked positively about the future, for themselves or for their relative or friend who has Multiple Sclerosis (MS). David was looking forward to spending more time with his wife when the last of his children left home. Mully said her husband was ‘always at the forefront of new things’ so she was confident that they would find solutions to any problems they might encounter. Sarah said, ‘We don’t look to the negative future. What’s the point?’
It can seem more appealing to plan for the short-term future or to live day to day, focusing on the here and now. Planning for daily life was very important to Dave: ‘If you’ve got Plan A you can change it. If you don’t have a plan, you’re in chaos.’ Several people talked about the importance of planning their holidays or their respite care.
Focusing on the here and now did not exclude looking further ahead. Chez and her husband were planning to move to a different part of the UK.
Some of those we spoke to were worried or scared about the future. Nicola’s mum is still fairly independent but Nicola wonders ‘where it will end’ and thinks about how she will help her mum in years to come. Ann thinks about the impact MS might have on her young daughter’s plans to have a family and on her ability to work. Louise found her GP’s advice helpful: ‘Don’t worry what’s going to happen in two years, three years. Just work out what you need to do now and get on with it and things will work out.’ Betty, on the other hand, was very frightened about the future and how she would look after her partner. Mike thought that one of the reasons he focused on the here and now is that he is scared of what might be ahead.
Other people preferred to put thoughts of the longer term future to the back of their mind, saying they’d rather not think about it.
The future can seem particularly unpredictable when dealing with MS. ‘You just don’t know,’ Eric said; and Betty said very definitely, ‘You can’t plan for the future’. Ray gave this uncertainty a positive slant when he said, ‘We know that the illness is going to progress but without a crystal ball we don’t know how it’s going to progress. So if the next 30 years with it is the same as the last 30 years then we’ll be doing all right. We’ll think we’ve done reasonably well’. 

Despite this unpredictability, some people anticipated that the progression of the condition would mean that they would need to have more equipment to help the person with MS. Eric could see that his life was likely to become more ‘restricted’ as his wife’s condition deteriorated.
Others were preparing their living accommodation for the future: Louise and her husband have decided, after putting it off for a few years, to change their bathroom; Mully and her husband have made their moorland house ‘watertight’ and are ready to make any other alterations they need; Morris’s dad is ‘all set up for the worst’ in a flat which has space for live-in carers if he should need them. Kay talked about taking one step at a time, but she was also looking to the future by including space for a mobility scooter, which her husband doesn’t need yet, in the design for landscaping their front garden:
For some people thinking about the future brought thoughts of their own death, or the death of their relative or friend with MS. Some older people worried about how their adult children with MS would manage without them if they should die first; Jean said she hadn’t talked about the future with her son because it was ‘too painful,’ but hoped that other family members would support him after her death. Morris has developed a bond with his dad through caring for him. He worries about how he will cope when ‘the inevitable’ happens and his dad dies.
While not everyone had discussed the future some were ‘desperately trying to avoid’ the option of care home. Morris said his dad ‘hates the idea’, John Y is really worried about having to pay for residential care for his wife and Kate says she and her husband ‘obviously’ don’t want to have to move to a care home in their old age (they are in their 70s now, living independently). Betty rejected her friends’ advice to ‘put him in a home,’ but she said her health was getting worse and she didn’t know how long she could cope with looking after her partner.
Patience, whose husband is already severely disabled, avoided fear of the future by deciding to live each day as it comes and to be optimistic. ‘I am positive about the future,’ she said. ‘We will never lack. We will never be in want’.

(Also see ‘Talking about end of life’).

Last reviewed July 2018.
Last updated July 2018.
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