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Brenda (on behalf of her husband)

I would have lived at home or a more home-like setting.  Since personal funds could not afford this I was treated like a second class citizen at first psychotic Alzheimer's episode and placed in nursing home because that was only option financially.

With Alzheimer's I was placed with 90 other people who were loud, not like me which made me frightened as I was still able to walk and talk, but couldn't always remember who or where I was.  I was isolated except when family came to visit each day, though I didn't know who they were.  I lived in constant anxiety because I knew I was not where I belonged, but just couldn't remember where it was I should be. In such a big, impersonal place, I had trouble finding the bed I was supposed to be going to. I wandered aimlessly and rarely was there a familiar face to reassure me. I didn't need nursing care, I just needed someone to keep me safe and take care of my activities of daily living.

Had I been able to stay home with supports or live in a smaller setting, I could have saved the system many thousands of dollars. I also would not have been as tortured in my mind as I was those last few years. My family would not have lived in constant fear of my well-being and their lives would not have been consumed with guilt and sadness while I was living and even these four years after my death.

Even now that I am in heaven, my family has disintegrated due to the stress of watching my demise while in a nursing home 40 miles from home. Since then my daughter has divorced and suffers from depression and anxiety. My wife has barely left home after 3.5 years of visiting me each day.

Had I had another option aside from a nursing home, the quality of my last few years would have been more bearable and my family would be able to rest. I would not have drained the assets which now required to leave my wife in the poverty line. I should have had more options.