Estate planning is not solely about preparing a Will, and with progressive illnesses you need to think about estate planning as planning for the future stages of your disease as it progresses.
The life planning portion of estate planning can be very different for a person with a progressive illness than a person without.
Parkinson’s, Alzheimer’s, Muscular Dystrophy, Multiple Sclerosis, Macular Degeneration: there are dozens of illnesses that are progressive and (so far) incurable. They require special care from an estate planning perspective.
There are some financial and health related documents you should acquire as soon as possible:
You should have an Enduring Power of Attorney. This important document names a person who will handle your legal & financial affairs if you become incapacitated.
You need an Advance Care Directive for health care (in some jurisdictions referred to as a Health Care Proxy). This document allows you to appoint one or more trusted agents to make decisions about your health if you are seriously ill or in a medical emergency.
This person should be familiar with your particular progressive illness and your wishes regarding treatment options. This document can provide written directions about your preferences for future medical treatments.
While you may feel you are not old (or wealthy) enough to have a lawyer prepare a family trust for you, having a progressive illness means you should at least consider this at an earlier stage than most.
To be effective, the trust needs to be established and fully funded well before your illness becomes overwhelming. This requires that the majority of your assets must be retitled to and aligned in a trust that should name you and a family member or trusted friend or advisor as trustees. This is a powerful tool to protect you as your illness progresses.
There can be tax, stamp duty and pension consequences from the trust, so it is important that these be properly investigated while you are still able to actively participate in the process.
Since your illness is progressive, you should give thought to who you will want to designate as a guardian for the future. Health documents need to be shared with your medical team and copies should be placed with your medical chart. this person might be separate from who you named to take care of your financial matters.
Take note: these financial and health documents are aimed at planning for incapacity. Incapacity can sometimes be viewed as black or white, either you are or you are not. Yet, disability comes in many shades and incapacity exists on a continuum – that is why fine-tuned planning is necessary to plan for your particular requirements and wishes as your illness progresses.
Understanding the potential progression of your particular illness and its probable consequences is essential to ensure your planning and legal documents can address those challenges.
If you haven’t already researched the potential progressions of your illness, you should do so, sooner rather than later. You should be open and honest about it and what it means, with your estate planning lawyer. Being upfront with your advisers will help to make sure that your working relationship and the plan you produce is optimal for you.
In the early stages of your illness, you should review your overall plan at least every 5 years, in order to create a history of your wishes, and so that you are able to fine-tune the plan as your illness progresses. This can help avoid the struggle to sign and make significant decisions after the disease has progressed substantially.
Your estate planning lawyer may need to take additional precautions to document your competency to execute legal documents the further along your illness gets. Medical certificates and reports are part of this process.
Being diagnosed and living with a progressive illness means there are a lot of changes in your life. Preparing for the effects of your disease is critical. Remember, estate planning is about life planning too, not just death.
For more information on creating a modern integrated estate plan or other estate planning topics, explore our articles and visit our website today to schedule your consultation!
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