Sudden Disease Escalation
“Art’s non-eventful P.D. lulled me into complacency for so long that I was totally unprepared for this sudden escalation — but I should have known better (“hindsight is 20/20). At any rate, I will look into getting help for myself and see if I can weather this storm.” – Rita
Art has Parkinson Disease. Rita knows it is a degenerative condition. They have a good neurologist and are connected to the Parkinson Foundation in Palm Beach County. Rita’s quote shows “Knowledge is Power” but “Ignorance is Bliss”. Denial is a very strong defense mechanism, even when we know better. Sudden disease escalation can happen at any time. It may be prompted by a trigger or just happen out of the blue. Whether Alzheimer’s disease, Parkinson, ALS, Multiple Sclerosis, or Cancer we are caught off guard by a quick physical or cognitive.decline.
Plan for a Progression
Get educated when managing a degenerative disease. Most Diseases have their own Foundation or Organization – Join one to get the newsletter, use a 24 -hour hotline and attend a Support Group. Check with your specialist on what signs to look for if a sudden disease escalation happens. You’ll know by a difference in ability. See your specialist, internist or when in danger, visit the Emergency Room. You want to get information and intervene quickly.
Line up help in advance. When you have in-home help, add shifts. As the primary caregiver, connect with a private duty home care company now. The paperwork will be done and they will know about your situation. When things happen quickly, it is a relief having help in place by making one call. A caregiver can also go to the hospital or rehab center.
Communicate regularly with family and friends. Talking with your personal “care team” cushions the impact of a progression. You and your loved ones will put your plan into motion as needed. A son or daughter may fly in to help. Keep your legal documents (Durable Power of Attorney, Living Will and Medical Surrogate) current and accessible.
Anticipate Future Needs
Sudden escalations can require a hospital and rehab stay. Or you may need a higher level of care such as Assisted Living or Nursing Home. Even without an escalation, it is wise to know about Assisted Living and Nursing Home options in your area. Consider what area is best in terms of future needs. You may want to be closer to the family. Anticipatory grief is real. Your life is likely to change a few more times during and after the disease.
And as the above spouse says, get some help for yourself so you can better weather the storm. Medicare pays for counseling so if you need emotional support, get it.
