My beloved is in his 5th day of choosing to go without food and hydration. Since his initial diagnosis with this Positively Sh—-y Palsy he has always known that he would end the misery when he had had enough. Too much pain, fear of falling, loss of sight, etc etc are outweighing any of the meager joys he finds in life.
We just had 3 wonderful weeks in Florida in a house with an elevator, so our huge bedroom had the same amazing view of water and boats and activity as the living room below. We were on a quiet street , just a short flat walk from a village with little shops, lively restaurants and a fishing pier. But just a block away was the ocean with a wonderful paved, flat walkway about 2-3 miles long. Perfect for wheelchair walks. We saw some old friends and had different family and friends come to stay, so I never had to manage him alone. A good way to spend your last few weeks.
As I end this journey I have been thinking of all the little things that have made life easier for him - and me - and thought they might help someone in the earlier stages. If I start a list, maybe others can add their suggestions. I am not going to include drugs, though I can highly recommend cannabis tinctures and lozenges for those who are able to get it.
The list:
A non-slip mat
Whistles everywhere. Around the neck, attached to bed/walker/wheelchair/shower
Suction handles. Extra hand holds for showers. Take on trips.
Aprons. BBQ style or amusing ones to keep clothes clean. Much nicer and more use than a napkin.
Urinals. More than one, in a bucket in case of spills when returned full. A milk jug with a handle and the top cut off works fine (for a man!)
Nosey cups. It has part of the back cut out so it can be tipped further and the chin can be kept tucked to prevent choking. You can cut a scoop off the edge of a plastic cup.
Apple sauce in pouches is a great non-messy way for helping to swallow pills.
A good gait belt. The wide one with loops is great for walking assist and helping to heave after a fall.
Using a stair or two to get up after a fall.
Adding fat handles to eating utensils. You can buy foam tubing that has different diameter holes that can be cut to size, or you can make your own with thin foam wrapped and taped,. They can be slid on and off the cutlery.
Books on tape. We use Audible and he has listened to so many books since reading became impossible. He can still read a little on the iPad with the font as big as it will go, but it is very tiring.
A baby monitor. Wherever I am I can see to check on him. Invaluable peace of mind.
It’s 4.30am and that’s all I can think of. I’ll try and go back to sleep and let others add to the list if they’d like.
Finoni
A new me!!!
Failed
Body acting badly. Is Clonazepam a culprit?
