Building Your Team
Building your team begins with a diagnosis. Anyone receiving a serious diagnosis needs some time to absorb the news. So do family members and whoever else you choose to tell. First, take in the news and hear what the physician tells you. 
It is highly recommended to have a loved one go to the appointment with you or at least be phoned into the meeting.
There will be a lot of information to process. Follow-up appointments, tests, treatments, and auxiliary services. These can be visiting nurses, physical and occupational therapists for example. Many doctor offices offer written instructions you can take with you. Once some of the shock wears off, get educated about your condition. Then continue living your life.
Building your team starts with your specialist and other medical personnel. It will also include an Elder Law Attorney, Financial Planner, Veterans Representative if applicable. You will want to have professional guidance on how you will finance your care and also which benefits you may be entitled to.
Getting Educated
Get information from different credible sources. Many people turn to the Internet for information and there is an almost endless amount out there. Try not to get bogged down in it. You may also delegate to adult children or a trusted friend some of the research. A great resource is the Mayo Clinic’s site. It is reputable, comprehensive, and easy to use. If your diagnosis has a Foundation or Association, join it. Organizations such as the Parkinson Foundation or Alzheimer’s Association offer so many free services and usually want a donation. You will receive up-to-date information, news on research, medications, a directory of doctors, and other services, and probably also a support group. Social Media groups can be helpful for emotional support and friendly tips but keep in mind it is not a professional source of information.
Staying in the Present
Disease can be humbling and empowering in different ways. Living in the here and now is important, with an eye on the future. As mentioned, you will want to get your legal documents in order. These primarily are; a Trust, Will, Medical Surrogate, and Durable Power of Attorney. You will also want to get your finances and any benefits, scholarships, etc. in order so that you feel confident about the future. It will also let you focus on the present. The first week’s post-diagnosis will be very busy. You may be physically and emotionally overwhelmed, pace yourself. Let others help with scheduling and shopping, cooking, and even transportation.
With a progressive, degenerative diagnosis like M.S., ALS, and Cancer folks tend to look too far ahead and worry about what will or will not be but we can’t know the future. We can know the direction and often a time frame but jumping too far ahead robs you of what can be done and enjoyed now and in the nearer term.
Adding Services with Progressions.
Your medical team will guide you on the management of your condition. Get a second opinion. Discuss other treatment and medication options. A lot of other things are left up to you. Pamper yourself! Get help early, rather than waiting until it is a true necessity rather than a choice. Consider individual counseling. Medicare pays for counseling to treat depression, stress or anxiety. Join a Support Group. If you are alone, consider hiring an aide and Care Manager. As time goes on, you may be deciding whether you want to remain home, relocate closer to family or move into an Assisted Care community. If you have Long Term Care insurance, review your policy with regard to what your coverage is, any elimination periods, and where your coverage is. If remaining at home is your preference, increase the safety features there.
Hiring a caregiver is a good idea whether you are alone or to give respite time to your spouse or other family members. Start out with a few hours a few days a week. They may help you with personal care such as bathing, or household chores and transportation. An aide from a licensed company will assist with safe personal care and household tasks like cooking, shopping, and so forth.
Further Decline
Whatever your individual experience with your disease is, at some point, hopefully after many years, more help will be needed. Because of further cognitive or physical decline (or both) new members of your team will be added:
~Increased Home Care Assistance
~Explore Placement options
~Meet again with your Elder Law attorney and Financial Advisor
~Discuss 24 hour care options
~Speak with A Hospice Provider
~Consider using a Patient Advocate.
Building your team continues as the disease progresses. Your personal network – family and friends are vital as you go along this journey. Remember, you have planned ahead, put your ducks in a row, assembled support and you are NOT alone.
