Many people living with MS and their families follow the oft-quoted phrase “plan for the worst and hope for the best”. This philosophy helps us to be prepared for difficulties before they happen if they happen.
In this section we discuss anticipating needs that might arise in the future, identifying legal documents that need to be in place, and taking steps to assure that your loved one’s wishes and values are reflected in future medical and end-of-life decisions.
What do we mean by life planning?
Life planning is a way to anticipate what the future may hold and prepare, in advance, for those possibilities. It involves anticipating changes that may be in store. Planning in advance includes thinking ahead and communicating wishes and preferences about health care, end-of-life and daily care.
It also includes making financial and legal arrangements in advance of need so that families are not caught off-guard when these events come to pass.
Planning ahead requires clear communication among all family members and clarity regarding the values and wishes of all family members. Planning ahead also means taking ownership of the future, reducing medical and financial risk, and doing all one can to assure security and the best possible quality of life.
Talk To Family
• Loss of income can occur because of care giving duties and changes in family roles. In addition to probable loss of income by the person with MS, care giving can also result in lost income as more and more time is required at home. This can cause a significant financial burden on families. Being aware of what financial supports are available is very important
• Loss of time to care for one’s own needs. Family Care Givers providing 24-hour care often cut back on making time to take care of themselves.
• Reduction in friends and family being involved in yours and your loved one’s life. There are often two types of people in our life - individuals who are very important to us, and those who are more acquaintances. The acquaintances may drop out of your life. But if you can focus on the people most important to you, they are likely to stay around and be supportive.
• Changes in your partnership with your loved one. It may be that he or she finds it more and more difficult to communicate. Ability to speak and cognition may become impaired. Intimacy may fade in many ways, from companionship and conversation to the loss of sexual intimacy. Finding joy in the small things of life, and spending time to nourish things that both of you care about, may become increasingly important.
• Physical mobility often becomes impaired to the point that moving on one’s own becomes impossible. When this happens, total care and assistance can be needed. Total dependence impacts caregiver independence significantly and requires planning, should this occur.
Because of all of the challenges and changes that can come with MS, anticipating ahead and being prepared for challenges that might come in the future are extremely important. It can enable your family to make decisions in a much more deliberate and thoughtful fashion, rather than being caught off -guard and having to make decisions in the midst of crisis.
Practical considerations such as costs of care, transportation for treatment, necessary equipment and the need for outside help should be discussed.
The emotional and social needs of each family member should be discussed, and it is important to speak honestly about personal limits and the burden of stress involved in caring for someone who is seriously and chronically ill.
You want to tap into the strengths and abilities of all your family members. What services do you need to know more about? Who can do some research on the internet? Who can explore financial eligibility for some community services? Who can find out more about equipment and assistive technology that might help make things easier? Who can review legal and financial documents?
Discuss together what needs to be done and prioritise a “to-do” list. Sometimes this planning conversation takes place in one long meeting; other times it involves several discussions. The important thing is to develop a plan for how to go forward and see that the plan is written and distributed to all involved. Keep in touch with each other, so that the best possible care can be provided.
Anyone can donate organs and tissue. For people with MS, these donations will be used for research rather than for transplants. For those considering organ and/or body donations, planning ahead is essential. Brain tissue must be prepared within hours after death to be of use in research. Further information is available here and here.
The more details that can be discussed, the easier it will be to administer funeral arrangements according to stated wishes. This also helps to decrease family stress at the time of death.
Some of the decisions that can be made in advance include:
• the type of service desired
• the type of casket or urn
• the type of disposition of the body that is preferred (burial,
• cremation, etc.)
• details related to the service (funeral service vs. memorial service, clothing for burial, makeup, hair, viewing or not, open or closed casket)
MS is such an expensive disease. Are there things I can explore right now that could help our family financially?
Maximise your income tax deductions. You probably already know that you can deduct out-of-pocket medical expenses for doctors, hospitals, therapies, etc. if these expenses exceed a certain percentage of your income. However, you may not realise that other costs related to living with a chronic medical condition, such as room and board for a personal care assistant, wheelchair repairs, modifications to your home for medical reasons, wages for personal care services, etc. might also qualify as medical deductions.
It is important that you consult with a qualified tax professional to be sure you are holding on to as much income as you can.
Why is it important to have legal documents regarding future health care decisions for your loved one? It is important that someone is authorised to make health care decisions on behalf of your loved one, should the time come when they are unable to make these decisions. Since some of these decisions are apt to be life-or-death decisions, you want to make sure that enough information has been shared so that decisions reflect your loved one’s wishes.