Permanent Care

I have known for weeks Merv will go into permanent care next year (2018) but I hadn't told him.  I kept putting it off. Is there ever a good time to tell your husband he needs to go into permanent care?
It seemed cruel to tell him before Christmas Day.  I felt like I had a ball and chain attached to my ankle,  but it's not about me.  On Boxing Day I took a deep breath or two or three and explained by going into care he will be safe.  So many times I have felt out of control when transferring him from wheelchair  to lift chair or toilet.  His balance is shot, my nerves are frayed! How long before he can no longer weight bear?  I want him to avoid having to go into hospital and the transition then into permanent care.  If we wait too long this becomes a real possibility.
In November I sent a permanent resident application to the respite organisation he stays with the most.  I had not expected a response so soon.  More than a week before Christmas I received a phone call from the organisation.  She asked me if they had a vacancy would I take it tomorrow or would I wait for after the New Year?  It was a trick question.  I replied to the latter.
I don't ever want him to go into permanent care.  He's only 63.  He should be working until 65 and planning his retirement.  The best laid plans are often never realised.  That was our plan.  Work until 65 years and travel around Australia.  The great Australian dream. Once we knew Huntington's Disease was to raise it's ugly head before his expected retirement age we chose to travel both in Australia and overseas.  I'm pleased we did.
This Wednesday we have a 'walk through' the facility which Merv will soon call home.  It fills me with dread.  Once in a care facility the only way out is in a box. It is the last stop in life's journey.  It shouldn't be this way for Merv but it is.
I pleaded my case with him.  I told him he will be safe in his new home.  I promised to take him out for fish and chips once a week.  I promised to bring him home to see the garden we made for him to enjoy.  I kept telling myself he will be safer and I know he will be.
It will be an end of an era.  I will no longer be caring for him, as one of my friends said who cared for her husband before he went into care.  I will be his wife again.  I look forward to that.

Christmas Memories

It's almost Christmas and what have we done?  John Lennon reverberates in my already jumbled head.  So little time, so much to do but it's not what you think!  Yes the shopping needs doing, the windows need cleaning and the garden is far from done.  None of this is really important, except of course the food shopping.
We took Merv to the local Christmas pageant and fed him hot chips while we waited in the crowd for the floats and groups of little children in colourful costumes.  We went to the amazing fireworks just across town.  We went on a boat and marvelled at the colourful Christmas lights which adorned the many houses on the local canals.
The jingling of bells was far from my head when I decorated the house and put up our table top fibre optic tree.  It looks nice in the lounge as it changes colours.
Then I stop and wonder if I'll be decorating what will be his room in the local care facility next year.  Too difficult to think about him not being here during the busy festive season, even though he would join us at home regularly and of course Christmas Day but it will never be the same.
I remember one of the counsellors telling us to imagine now what is ahead.  Imagine now what it will be like next Christmas without him living him.  I let my imagination go there, decide it's way too hard and return to the here and now.
What else can I do to give Merv wonderful Christmas memories?  On Saturday night we're looking forward to our local Christmas dinner with entertainment.  I'm not paying for Merv's ticket as I need to take his dinner with us, even his dessert, it's the being there which is important, not so much the food.  On Monday night there is a Carols singalong across the road.  I was told the couple have been doing this for years.  They decorate their garage with Christmas characters and lights, Carols are sung and Santa calls in for a surprise visit!
Dustin and Grace are coming for Christmas Day.  More wonderful memories for Merv to store away.
Huntington's Disease is a degenerative brain disease but Merv will remember.

Canal cruise to see the Christmas Lights

Merv enjoying the canal cruise

local fireworks

Santa at the pageant