Month: January 2019

Why are we still enjoying life while so many others in similar situations can’t?  In the caregiver discussion groups I read of people losing themselves, losing any pleasure in life and that’s not us, except for days here and there.  I’m realizing there are lots of reasons.

My daughter pointed out that Larry is still Larry – no cognitive decline or personality change so far.  That’s huge.  Although mental deterioration isn’t as common with Multiple System Atrophy as other neurological diseases, caregivers  report some loved ones have serious cognitive issues and others with major personality changes.

Last week we went to Walmart to buy some board games he thought he could play and spent one evening playing “Shut the Box.”  We couldn’t have done that if he wasn’t all there.

Who we both are makes a huge difference.  After all Larry was never an angry guy – more go-with-the-flow, so he’s amazingly tolerant of the impact of this disease,not cranky.  I’m definitely NOT go-with-the-flow, but I am pretty resilient.  Generally we are both happy optimistic people.  We take what comes and make the best of it. We still have a good marriage and enjoy each other.

We’re friendly, too.  People want to help us, and seem to enjoy helping us.  That’s partly how awesome they are but also how awesome (? ha) we are.  We moved away from our long time friends, but we moved into a real community of people. Most are at an age where they’ve seen enough ups and downs in life that they are empathetic to our situation.  Walking the dog helps to see people on a daily basis, too.  It forces me to get out.

We’re open about the disease and not self-conscious.  We invite friends for cocktails rather than dinners and they are happy to come.  They aren’t uncomfortable around Larry’s disabilities and symptoms.  We’ve gotten so we don’t worry if I have to stick my finger in his mouth to move a cracker that got stuck, and they don’t seem to care.  We don’t hide what’s going on but we don’t dwell on it either. Because we still do stuff we still have stuff to talk about other than the disease.

Where we live helps in more ways than just the people.  It’s beautiful and warm and sunny and green year round.  We can get outside and see pretty things, pretty places.  We’re not shoveling snow or putting on coats and socks and hats and gloves just to leave the house.

I’m also realizing the freedom the power wheelchair has allowed us to continue living life.  We found out how to qualify through one of the Neurochallenge education sessions. He might be bed-bound now without it because  I can’t push him in the small wheelchair that hospice provided.  Without the chair we’d be unlikely to go to a meditation with a Buddhist monk like we did last night, or go to see The Fiharmonic (an a cappella group), or see the manatees that cluster in the warm waters of a power station like we plan to do next week.

His type of symptoms help, too, and the fact we’re in a plateau and not adjusting to any new ones.  He can’t do any of the activities of daily living himself, he’s lost tons of weight, he has breathing and bowel and eating challenges, just like other MSA patients I read about. BUT  he has no pain, no nausea, no symptoms that make life unbearable (at the moment).

And last but definitely not least is my willingness to do the hard work.  Because it is hard!  Doing his exercises daily to keep him able to transfer from bed to wheelchair, making sure he does his breathing therapies twice daily.  Educating myself and fighting with the healthcare system to get what he needs.  I’m willing to do the hard work of getting us out of the house, of building a fire, or looking for things we can both do.  I do it for me as well as for him.  I need as normal a life as possible to stay mostly sane, even if it is hard work. I need us to be still enjoying life even while he’s dying!

This new year (all 10 days of it) I’ve tried to find something fun or different for us to do each day.  Some things are little, like a walk together (he rolls in his chair, I walk).  Some things are bigger, like a trip to Arcadia – an old town about an hour inland from us.   It’s making life a little brighter for us both.

My daughter (the PhD researcher in Palliative Care and Hospice for people with dementia) commented that what I do is focus on living rather than dying.  Yes, definitely.

Somehow, accepting the dying has made living easier.  We’re not resisting.  We aren’t focused on fixing the symptoms, just making our way through them as gracefully as we can.   With as little aggravation from the healthcare system as possible (grrr) , but that’s a post for another day.

Maybe the fact that he said he thought he was going to die in February has made our time seem more precious, but strangely I don’t feel more urgency.  I just feel more present in today.

I wake up thinking “what can we find to do today?”  One night we played Scrabble – he’d slide the letter tiles out from behind a screen and I placed them where he pointed on the board.  We’ve had neighbors over for a cocktail – can’t do dinner anymore, it too hard and slow for Larry to eat.  One night I was walking the dog and saw a friend out in the street and said come on over.  We lit a fire in our firepit, they walked over with their own drinks, and we sat visiting outside as the sun set.

Last night I’d invited a woman I met in our community yoga class to bring her husband for a cocktail.  He’d lost part of a leg many years ago in a paragliding accident and they have a great energy that I enjoy.  We had some bourbon, some marinated mushrooms and olives I’d picked up earlier at an Italian market.  Larry had a couple choking moments but it didn’t seem to bother them and we had a lovely visit. I’d even thought to make dinner before they came so it was quick to heat up after they left.  Yay me, or “brilliant” as our guest would say as he’s a Brit.

Several days ago it was perfect weather.  Sunny, about 75 degrees, a light breeze.  We drove south to the next town where there’s a fishing pier (Sharky’s) we’d never been on, figuring we’d get out on the water before the red tide returns.  The water was turquoise, people were catching big stingrays, there were bright colored umbrellas shading the tourists in their bathing suits, and the egrets and pelicans circled overhead.

What will we do today?  I’m not sure.  We have the hospice volunteer coming  this afternoon so I can do errands.  But maybe tonight we’ll go to a little jazz concert at a neighboring art center.  Or maybe we’ll find something right at home.