ALS kills its victims through the slow loss of mobility, swallowing, speech, fine motor skills, strength and energy. It is a humiliating, emasculating, slow death, with little to no time to prepare yourself and others for what lies ahead. There is no cure. There isn't even a specific test to diagnose the disease. A person has to run through months of tests to cross off every other illness before a diagnosis can be confirmed. Months of life on hold, wondering why your body is acting the way it is, living in ignorance, in fear, in nervous angst at what the doctors are testing for tat they're trying to cross out other major life-changing illnesses.
The average life span of a person with ALS is 3-5 years. Diagnosis could take up to a year and a half. People often forget the months it takes to finally get the confirmation. One and a half years out of 3-5. It's difficult to think in terms of "living with ALS" when someone is "dying from ALS". But in between the doctors' appointments, educational counseling, emotional counseling and equipment fittings, the most important thing to remember is the time you have left has a deadline. We all have a deadline, really. But you know yours has been shortened. So what are you going to do about the rest of your life as a couple?
What's important to you and your spouse? Family, travel, entertainment, creativity, financial security for your family? It's time to start a list of the things you need to do, and the things you want to do. Whatever you call it, there's no getting around the fact that it's a bucket list.
The Things You Need to Know:
$$ If your spouse has been receiving disability checks, not only will they stop, but if you were paid in the month your spouse passed away, they will electronically pull that last check from your account. Almost all checks in their names will stop coming.
You may continue to get checks and electronic payments in your spouse's name. If the bank account is a shared one, do NOT take your spouse's name off for the first year, until you're sure the checks have stopped coming in his name only.
Q If you've always wanted to go to (fill in the blank), do it sooner rather than later. The longer you wait, the more concerned you must be about accessibility and energy levels. If you want to see family members that can't visit you, do it sooner than later. By the time we got the handicap accessible van, Bill could no longer take longer road trips, so he missed out on seeing his sister before he passed away.
6 If your spouse has always wanted to try skydiving, zip-lining, riding a camel, or any other "never-done-before's", do it while he can. Things can change from one day to the next. What your spouse can do today may not be possible next week.
_ Your medical staff is very knowledgeable, but a little homework goes a long way. Bill's gravity bag feeding schedule was getting messed up every time he went to a day's worth of doctor and specialists' visits. If I hadn't read up on supplemental feeding solutions, I would never have known to ask for what's called a Kangaroo pump, where the feedings are scheduled and the food is automatically pumped into the feeding tube (along with the water).
C Think ahead. If you wait until your loved one needs a walker/wheelchair/power chair to ask for one, he or she will be immobile while you wait for one. At the first sign of weakness of the legs, get one, order one, or if you're lucky enough, get fitted for one. It will be there when needed.
The Things You Need to Do:
Will your family survive financially once you're no longer with them to add to your income, pay the bills, or keep track of investments? Know what to expect as far as your budget may be as well as your bills.
Do you have a will? Do you have a Power of Attorney for both medical and financial issues? Do you wish to have a DNR (Do Not Resuscitate)? You can make it as specific as you want. "Yes, trach me", "no to the colostomy", etc.
Do you know your spouse's passwords to online accounts?
Does your family know who to call for heating and air conditioner; plumbing, car repair?
Do you know where the warranties are for appliances and electronics? Where the taxes and receipts are filed? Where the insurance policies are?
Where are the tools needed for occasional maintenance? Yesterday I looked all over the garage, knowing Bill had loads of tools, but I couldn't find a putty knife to save my life!
Do you have your spouse's doctors' names and contact information, medication list and insurance information in case you need to call 911? Best thing to do is have that information in a folder so that it can either be given to the paramedics or brought to the hospital by you. Don't forget a copy of your spouse's driver's license or state ID. Most ER's ask for all that.
Do you have contact information in case you need to notify his or her co-workers, friends and family, should you need to?
Family caregivers not only have to watch their loved ones wither away day by day; they lose their freedom to plan ahead, run errands, sleep through the night, clean house, have company, cook meals, and take care of the rest of their family. They lose their soulmate, their best friend, their partner in intimacy, their keeper of secrets and memories, their breadwinner, investor, their maintenance man. They lose the person they fell in love with over and over again through the years right up to that last breath.