The beast in DWs mind is fighting back. It despises anything that interferes with its agenda.

Comrade

When light doesn't fill our home and a winter's afternoon takes over, energy and patience take a leave of absence. Difficult is an understatement, describing the struggle to maintain composure and keep level-headed with DW.

DW's repetition and non-stop crying for the last 2 days, flood each room with uncertainty for both of us. However, it is my job to reassure and to keep a cool facade, while caregiving the beast who lives in her mind.

It is a battle of wills between my better self and the exhausted, not to raise my voice or react with a less than gentle expression on my face or tone.

This is called exhaustion and after 3 years of daily care without services, I am expended.

However, we have just been approved by a caretaking company for services. DW and I have qualified for significant help with daily bathing, help with respite and most important, physical therapy.

The beast in DWs mind is fighting back. It despises anything that interferes with its agenda.

At the moment, it is punishing DW with fears of being taken away or removing what is familiar to her. She doesn't understand and only feels through a broken lens. 

She is crying.

She cries from fear and misunderstanding. I cannot stop her nor help her be calm. The drugs from her psychiatrist (our friend) only place a band-aid over a 5 inch gash. Reaching for more information from her primary care (my best friend) is borderline futility. Dementia cannot be charted accurately with any degree of accuracy. Treatment is more a recipe book from hell and her drugs compare to taking baby aspirin.

Love and patience.

With gratitude, I daily thank her daughter for coming by once a week, her girlfriend's now are rallying and more. The wait for the cavalry has been a long time. .

No good intentions or support groups can fix DW, only love and patience. This is a trip with no conductor; a runaway train. 

https://www.youtube.com/watch?v=c8-BT6y_wYg

David J

Thank you, Comrade, for the Leonard Cohen. Thanks also for your spot on description of dealing with a spouse with dementia. Some of the details may be different but the emotions are the same. I hope the crack opens wide and the light shines in.

Comrade

Leonard Cohen reigns and provides comfort and insight.

Jo C.

. . . . for some of us; no matter how we strive, "it" can be relentless. If our Loved One was serene and content, that would have been enough; but the dread part of this was to continue to bear witness to my Loved One's dreadful emotional experience that drove behaviors which come unbidden stoked by the changes within the brain, (FTD), which of course we are most often helpless to stop.  Some days were better than others which sometimes fooled me into thinking that perhaps we had turned a corner and things were moving towards "better" only to be thrown against the harsh experience of reality again and again.  Even though I knew better, hope sprang eternal.  It was all part of the process of the journey; still we strive and at times can make a difference.  You are doing a very good job of managing as best can be under the circumstances with the challenges as they arise, she is blessed to have you by her side.

Thank you for the link to Leonard Cohen; I have always enjoyed him so much; "Anthem" being my favorite followed by, "Hallelujah," and I do enjoy the instrumentals in "Goodbye Marianne."  Very interesting fellow by history and talent; brilliant man and so very, very cool.

J.