Hi Caregivers,
My PALS died last December. We did a lot of things right and a lot of things wrong (this on the job training really sucks, doesn't it?) so I thought I would share:
--We did put on a ground floor bed & bath addition, which we had planned to do once we got old and feeble but had to accelerate. The difference between the the cost of construction and the increase in value to your house, if you own, is a tax-deductible medical expense.
--Rely on your ALS Association. We weren't too keen on the support group meetings, but they loaned us an electric wheelchair while we were waiting for the insurance one. That electric wheelchair allowed my PALS to get himself in and out the bathroom, go to the local park, and he even slept in it. We tried the hospital bed but he was a big guy. His feet stuck out over the end and he got trapped in it like a hotdog in a bun.
--We took a family vacation with adult kids and a couples vacation while we still could. The just-us-vacation involved a rented mobile scooter in a foreign country and was fun, sad, funny, terrifying and totally worth it.
--Get the PEG now, you're going to need it anyway. My PALS respiratory status declined rapidly as he developed difficulty swallowing. We were being treated at an accredited ALS center at a major teaching hospital, and he was monitored only every 3 months. By the time the ALS center docs recommended the PEG, we decided to do it and they wrote the order, the radiology department of the same major teaching hospital refused to do it as "too risky." (Too risky as compared to what? Starving to death? MY RN SIL said they were afraid he might have respiratory failure and die, which would be a "bad outcome" for them.) We had to find another provider at another hospital real quick. Stressful.
--See above -- don't assume because you are at an ALS center, that you don't still have to be a vigilant advocate. I can't begin to list everything that fell through the cracks. You are looking for medical care. They are looking for research subjects. Not that they weren't dedicated people, but they had a protocol they followed and it wasn't personally individualized care, as least not our experience. E.g., the nutritionist provided some handouts but not an individualized weight maintenance plan. The PT provided some literature but didn't actually do any PT, we had to get that elsewhere.
-- If you have the resources, try to buy and control some of your own equipment. My PALS had a bi-pap prescribed for respiratory support. So far, so good. We had to physically go to heck and beyond to pick it up. Insurance only covered one mask. He had a full beard so it didn't work, we bought our own different style. A part broke and it would have take 8-10 business days to replace. How was he supposed to breathe until then? We bought our own and used the insurance one as back up when it finally arrived. We had respiratory problems over a weekend and the doc by phone suggested increasing the bi-pap pressure. Only the (closed) respiratory therapist office had the key to do that. It's so easy for your PALS to just hop in the car and go somewhere -- not! We had a PALS friend who accessed and adjusted his own bi-pap innards. Good idea. P.S. Get your own CO2 pulse oximeter. Get your own peak flow monitor to track respiratory volume between appointments.
-- Try to find a brave, action-oriented friend to step in and organize all the people who want to help. You will not have the time to organize all those "just call me if you need anything" friends yourself.
-- You will have a number of difficult decisions which are hard to even talk about, let alone make. Get a PEG? Live longer with a trach tube? Stop trying to go out and do normal things so you qualify as "homebound" and can get Medicare support? Stop trying to live and start planning to die so you can get hospice care? Best advice I got -- don't start hospice care until you get every piece of durable medical equipment and every service you might need from health insurance. Some may be un-gettable after you take the hospice step.
-- You are doing the best you can. You will be visited by the "coulda, shoulda, woulda" monsters. Try not to feed them.