Rounding up just ten things I have learned about Alzheimer’s Disease and being a caregiver for my father with it, was quite difficult. I knew absolutely nada, zip, zero zilch about the disease when my father came to live with my family 5 months ago. I took a crash course and still learn every day.
1. If Alzheimer’s has not touched your life somehow yet…it will someday.
2. If you do not laugh at the funny stuff, you will cry. A sense of humor will keep you sane. I may not be sane – but I laugh a lot! Now why did dad have that towel on his head the other night? LOL!
3. PLAN for the future now – financially and with your end of life wishes. Do not leave a mess for others to have to deal with or decipher. Long term care insurance, 5 year look-back for your finances, advance directives, living will, power of attorneys, health care proxy, wills..all need to be in order.
4. If I ever get a diagnosis – I will call Dr. Kevorkian up from his grave! Being silly and serious at the same time here.
5. Hospice is a blessing! There are different criteria for Alzheimer’s patients than others, so contact them early to learn about them.
6. Being a caregiver for a loved one with Alzheimer’s, even if you have a lot of help (which you will need), is the toughest job in the world! But I would not trade my role or time with my dad for anything.
7. It is what it is. Divine intervention, disease progression etc… Until there is a cure it just goes on its’ own little path. No timetables, no predictions when a trigger that worsens it will come along. Just roll with it.
8. Not everyone around the person with it, will react the same or deal with it the same. The focus must be on what is best for the person who has it. I have written over and over…it is not about you…it is about them. What you can provide, what they need, what is best for them at the time – that is what caring for a loved one is about.
9. Educating yourself empowers you. Whether on the internet, by medical professionals or local support groups – arm yourself with Alzheimer’s Disease knowledge!
10. Skilled nursing facility, assisted living, nursing homes and residential care centers are not bad words. Do not prematurely or knee-jerk rule them out as an option and do not think less of yourself, or have to justify yourself to others, if you choose that option for a loved one at some point.
Alzheimer’s sucks – sorry folks – no two ways about it. It is a horrible disease. But the fact of the matter is, there is a good chance one of your loved ones may get it or heck…you may and your family and friends will have to deal with you. I love my dad and as he has now entered the final stages of the disease and is on hospice (there is no time), remember the man he always was and why he deserves my attention. My priorities have shifted temporarily and that is it…this too shall pass. It can last a while, but in the end…there is an end…just life…a wonderful life.