Life Planning Considerations

Talk to Family

People with MS and their families can be robbed of many things as they live with MS, including physical abilities, independence, financial earning power, emotional ties, and options for the future. It can be frightening to consider all the changes that can happen over time. Losses that may need to be anticipated include:
• 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.

If we sit down as a family to talk about possible care needs in the future, what should we discuss? What would our goal be for this conversation?

Practical considerations such as costs of care, transportation for treatment, necessary equipment and the need for outside help should be discussed.

What is known about all of these issues?
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.

Can a person with MS donate tissue or organs?
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.

Is it recommended that funeral arrangements be discussed in advance?
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, make up, hair, viewing or not, open or closed casket)

Finances

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.

Legal Issues

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.

What are the different types of advance directives? Advance directives help people achieve a sense of control over their health care in the event they become unable to make a decision for themselves. The most common directives are:

What is a Living will? A living will spells out a person’s wishes about medical care in case he or she is physically unable to state those wishes. It addresses specific medical situations such as the placement of a feeding tube or the use of mechanical ventilation if respiration fails. The living will spells out what the person wants to have happen in those situations. Many states only allow a living will to be utilised when a person is terminally ill, in a coma, or in a persistent vegetative state. Sometimes this document is referred to as an advance medical directive.

What is a Health care proxy? This directive allows a person to name a personal representative or agent who will make medical decisions on his/her behalf, should personal decision making become impaired. It is critical that this representative understand the values, beliefs, and desires of the person being represented, and that any decision he/she makes reflects the person’s wishes as outlined in their living will. Health care proxy is sometimes called a medical power of attorney.
• Do Not Resuscitate Order. This document instructs medical personnel not to use CPR (cardiopulmonary resuscitation) if the person’s heart stops beating. It is important to review these documents regularly, and execute new documents when wishes have changed. Also, as long as the person is mentally able, these directives can be revoked at any time.

Is it important for me to have these types of legal documents as well? Everyone, even those in good health, should prepare these documents because we never know when we might become unable to express our wishes. It is also good to keep in mind that if one does not choose an agent to make medical decisions, then a court will do so.

Do we need wills? Everyone should have a will. You and your loved one should have a current will drawn up by a solicitor and be sure that you keep it up to date.

A will allows you to make your own choices. It also provides an opportunity for wishes to be stated with regard to guardianship of minor children and management of their assets until they are old enough to assume control.

If these plans are not made court systems can make this extremely expensive.


Consult A Solicitor

Many people have never hired a solicitor or thought they needed one. But a long-term illness or disability can change lives dramatically, and it is helpful to have expert advice to avoid possible devastating effects on you or your family.  Your needs will determine what kind of solicitor will be best. Perhaps a solicitor who practices general law will be able to do everything that’s required. But if the financial situation is more complicated, you may need a solicitor with experience in estate planning to help you sort through income, property, bank accounts, and other assets.

If you need help finding a solicitor, ask trusted friends and associates for recommendations. Other professionals like bankers, accountants, and insurance agents may also have suggestions. The Irish Law Society have a list of registered practitioners which may help you find a solicitor with expertise in the area you need. (Look in the Yellow Pages under “Solicitors Referral & Information”.)

Some Of The Services A Solicitor Can Help You With: 
• Wills: Everyone over age 18 should have a will. Most solicitors in general practice can draw up a simple will. If a will was written long ago, review and update it if necessary. Appoint an executor.
• Estate planning: If there are large assets or there are complicated business or legal considerations, consult an solicitor who specialises in estate planning and is familiar with the legislation concerning estates and taxes.
• Durable Power of Attorney: This legal document, signed by a competent person, gives another person the authority to handle some or all of the first person’s affairs. It continues to operate even if the person who signs it becomes incapacitated.
• Durable Power of Attorney for Health Care: This legal document allows another person to make medical decisions for someone who has lost the ability to make their own decisions. It can include detailed specifics about what should be done in the way of treatment and life-sustaining supports. It allows a trusted friend or family member to direct the GP according to the patient’s wishes. The person who signs the durable power can change or revoke it at any time. Everyone over age 18 should have a durable power of attorney that includes health care.
• Advance Directives: Sometimes called living wills, these allow the person to give instructions about medical treatments that he does or doesn’t want if he becomes terminally ill and is unable to express his wishes. Hospitals and nursing homes are required by law to inform a person about advance directives before he is admitted. However, he is not required to sign an advance directive in order to be admitted.
• Guardian: The court appoints a guardian to control and manage another person’s affairs and/or property. Guardianship is expensive and time consuming and is rarely necessary if other procedures like a durable power of attorney are in place.

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