I ended up getting about a 30 minute nap today.  My butt looks huge and Duane’s arm was covered in drool BUT I got a nap!!  If we invite you over to watch TV this maybe the outcome. 

– xoxo Victoria

Hello, I have been more quiet than normal on here lately.  Duane has started progressing more rapidly.  He is comfortable.  His 45 birthday is tomorrow.  We have hospice coming in daily now. I hopefully I will be able to post a more detailed update in the next few days. 

– xoxo Victoria

Everyone loves a fireman.  Yesterday the wonderful Del Mar Fire Department paid us a visit.  

I was in the process of moving Duane from the bathroom to the bedroom but his legs were frozen straight.  I tried with all my might but I could not bend them.  Due to the configuration of our home I knew we couldn’t get into the bedroom with his straight legs…so it was time to try out the hospital bed.  

Well we had never tested it, or tried it so I had his wheelchair in a wheelie position, resting on my hip as I tried to set the bed up to transfer him.  Once the bed was ready I set all 4 wheels down and he immediately started to slip out of the wheelchair, his legs were frozen straight and there was nothing I could do to stop what was happening. I ended up helping him slide to the floor and placed a pillow under his head.  I went to get help, but no one on our street was home, so I called 911 – and was put on hold – no one even said “please hold” – it was just a recording. So I called the station direct and asked for a lift assist – I was crying and explained the situation – they headed right over.  

I met them outside, told them Duane was a retired fire captain and they came in wanting to help.  They petted Buddy and lifted Duane into the bed and made sure we were all set.  I walked them out – crying and apologizing. They asked about him and how he was doing and if they could do anything and to not ever hesitate to call. I thanked them and went back in.  

Duane was fine but Buddy was PISSED!!  He seriously thought the bed was for him.  He was so confused as to why Duane was in “his” bed,  It was funny and we laughed, finally having him jump up and lay with Duane. That dog is so spoiled!  

– xoxo Victoria

The house we live in was built in the 1950’s.  It’s a cool little place, a block from the beach and close to Duane’s family.  Last week I walked into the bathroom and thought “hmmm I didn’t know they had heated tile floors in the 50’s”.  When I stepped into the shower it was like stepping on a heating pad that was set on high.  I told Duane I think we have a leak…he rolled his eyes.  I asked his brother if he could come look at it because I think we have a leak…he rolled his eyes. 

TODAY – the water was just turned back on as the plumbers had to turn it off to re-pipe the hot water pipes in the house because we had a slab leak. 

– xoxo Victoria

This is what having guests everyday since June 8th looks like.  This will be them for the next 48 hours!  

– xoxo Victoria

Two years ago Duane said to me you seem at peace.  I was…I loved my life.  I lived on the water, water skied every morning, fished and wake boarded in the afternoon and then worked in the evening.  I would come home, take the pink pontoon out, drink some wine and relax.  It was seriously my slice of heaven. I was at peace. 

The last six months have been extremely hard.  I have lost all sense of the peace I had worked so hard to get. Not only dealing with the progression of Duane’s ALS, but dealing with all that goes along with being married to someone with a terminal illness. There are doctors and nurses and hospice and insurance and medicines and paperwork and friends and family…

All we are trying to do is to enjoy everyday to its fullest with death looming in our faces.

Everyone gives their option and speaks their mind when they feel like it.  They tell me what I’m doing wrong and why I am doing it wrong and how I could do it better.  There are secret meetings and secret conversations and back stabbing “family members”.  There are disagreements and fights and hurt feelings.  There is blame and hostility and meanness. It is too much.

About a week ago I decided I don’t care anymore.  I love Duane, I am doing the best I can, he knows that, he acknowledges that and that is enough for me. I deserve some sort of peace at this time. If these people insist on being insensitive and mean, there is nothing I can do about it.  If they don’t like me, there is nothing I can do about it.  If at this stage in the game being rude and proving you are “right” is more important than compassion and love there is nothing I can do.  I can’t change your mind.  Nothing I will or can do will make a difference so I no longer have to try.  I don’t have to try to meet your approval or meet your standards.  I just have three responsibilities… Duane, Buddy and myself. That is all that matters,  So keep talking shit, keep having secret meetings and I will hold my head high and know that I am doing something no one else can do. 

– xoxo Victoria

Duane has not been convinced to try the hospital bed yet.  Buddy thinks we got it for him. 

– xoxo Victoria

We spent the last three days on the yacht.  Duane’s brother helped us do some much needed maintenance and I was able to teach his nephew how to drive.  We all had a great time and can’t wait for them to visit again. 

– xoxo Victoria

We went to the yacht today and were able to spend a nice afternoon on the water. When we came home Duane’s brother and wife cooked us dinner!!  It might be my dream day – on the water and having someone cook dinner for me. 

– xoxo Victoria

How did you spend your Saturday morning?  I spent mine at the local Quick Care.  $145 later and armed with a sling I was back home.  

I have something wrong with either my tendon or my rotator cuff, I need to follow up in either 3 or 10 days with either an orthopedist or a physical therapist and either get an MRI or therapy.  WHAT????

Obviously this means I am out of commission for at least today and tomorrow.  Luckily Duane’s sister and brother helped out.  I would not have been able to take care of Duane at all today – so I am thankful they were here to help. 

Don’t ask… I have no idea what I did. 

– xoxo Victoria