Almost a week has past - the days were full of many things, ups and downs, chaos and peace.  The test for Wilson's Disease came back negative, which I guess is good news.  The not so good news is that Kris is not transitioning to home as well as I had anticipated. He is not eating any more than at Aspen House and he actually has been wanting to go 'home' (that is normal expectations I think for him as that was home to him for quite a while); he continues most of the emotions as he did at AH, all I thought would improve if at home... the dr said this was part of the dementia progression which makes me so sad to watch.  The search for home care came up empty handed due to reactive behavior at having strangers in the house.  I think it is the confusion of life in general and bringing him home was probably not the best for him even though at the time I felt it was... now I know and will try to find peace with that.  The doctor Kris had at AH was to continue care for him at home, he came this afternoon and was very surprised to see the change in Kris - and disappointed like I think we all are.    Dr. said he had never seen Kris act like that and asked if I thought he should return to Aspen House.   I am not sure about this but I also am sure that I can no longer care for him at home especially without help. So I am sorry to inform everyone that he will be returning to Aspen House tomorrow - he is actually okay with it and seems to be looking forward to seeing 'the girls' again.   He will be in the same 'purple area' as the carepartners there are best suited for Kris.   Dr. will be reviewing his meds especially with the onset of agitation, he thinks it will subside in a few days. Dr. also thinks Kris is reacting to the change along with the progression of dementia. I wish I could say things had gotten better, that being home brought him peace... I'm sorry as that was being selfish.  I ask that you continue to lift Kris in prayer that wherever he is, he will find peace and comfort and feel safe.

 

I have learned many things this last month and the past week:  that although no one can take care of Kris like I can, others can care for him in ways I cannot.  That caretaking by a loved one or a carepartner is difficult, heartbreaking, and in many ways a gift ... we are trusted by someone who can't care for themselves any more.  We are loved by someone who is afraid because they are living in a world where nothing seems real.. except a hug, a smile, a tender touch, and a soft voice.  I have to admit that when caring for someone 24 hours a day, sometimes I fell short of that.   There were other wise words I wanted to share, but they have left me.  I am stronger than I was 30 days ago when this started, but my heart is still heavy.  I watch Kris sleeping knowing that this is not home anymore, at least for awhile (I HAVE to keep that thought in my heart or I couldn't make it through).  Well.... as my Mom said, "be brave for Kris".

 

I probably won't be blogging much - I think it is is too heavy.  Just know that Kris and I are so blessed and thankful to have family and friends that care and love us, that have supported us in a million ways and prayed for us unceasingly.  This disease is just too terrible,,, I hope you will support research and cure when and however you can. 

 

One last note on Dementia and Alzheimers - someone asked what is it like to live with this disease?  Many years ago I had recurring dreams/nightmares about falling off a ledge into a deep crevice or canyon, I would always land on a narrow ledge.  Looking down I saw nothing but blackness and fear, looking up I could see the turquoise blue of the sky and know God was watching me.... I guess it is like Heaven and Hell.