Dementia care needs stepped up and improved greatly in the United States, at least until we have a cure or better treatment. It’s unacceptable that dementia is at epidemic proportions yet these patients receive subpar funding and care. Other countries are far more advanced than we are. It’s sad that we are not offering more.

Even though it wasn’t feasible, I still wish I could have kept Mom at home. But when that option was exhausted, I wish I would have had this dream place I envision in my mind for her to live, a better living option for dementia patients who are no longer able to live at home. If I had the finances, I would create a “home” like this one for our loved ones with dementia.

My mom was in a beautiful facility with good staffing for the most part, but she was still locked in four walls. Yes, it had a nice gated outdoor courtyard, but the wrought iron fence wrapped around it reminded us of her inability to get out. She always walked miles upon miles for exercise, so we did the best we could with that little courtyard, but it wasn’t enough. She knew she was locked in, and she felt it in her soul as well.

Don’t get me wrong: it was a necessary choice and she was well taken care of, plus I was only three minutes away so I was there all the time. However, I feel we can (and should) be able to provide more for these patients, given the fact that we dump thousands into their care each month out of their own pockets (until their money runs out, which is another problem). I often wonder (to this day) if Mom would have done a little better (for a time) in wide open spaces.

I envision a place with acres of land safely secured on the perimeter, but with large open areas to roam, whether still walking or in wheelchairs – a place where fences are not seen, but instead obscured a bit by nature. I see safe walking paths, flowers, and gardening areas for patients to engage in. There should be therapy dogs roaming the property to calm these dear souls. I’d like a Chapel for church services. My mom missed that significant part of her routine, and she still needed fed spiritually. Even going there and simply singing old hymns during the service would have comforted her.

We needed more exercise options and areas. It would also have been nice to have an area where she could safely engage in some cooking and baking one on one with a helper, even if she could only roll out dough or cut out cookies. She didn’t want to be “observed” in a group. A safe pond area for fishing and a petting zoo area with a calming butterfly house would be wonderful. Of course, nourishing and appetizing meals are needed, but an old-fashioned ice cream parlor would have been nice too. I needed some areas where Mom would have felt like she was going out to lunch or out for a treat with me like we had done before. She repeatedly asked for that, but I heartbreakingly couldn’t accommodate her request.  I could go on and on.

It would be most beneficial to have assigned carers so these patients are not constantly confused further by multiple changes in staff. We need carers who are extensively trained in dementia protocols from the aides all the way up to the RNs and doctors (including staff in emergency rooms and for hospital stays). Her doctor put an order in for every-15-minute checks on her once she progressed in the disease process, but there wasn’t enough staffing to follow through with it. I spent many days way late into the night there, and the staff was stretched to meet the intricate needs of dementia. Dementia staff (including aides) need paid top dollar. The special needs of these precious people are extremely demanding and vary from moment to moment.

It would also contribute greatly to ultimate care if someone could come up with a fire alert system without the blaring loud alarms that froze my mom, scared half to death, in her room if the staff didn’t get to her before it went off.

Drastic changes like these in care would be too costly, you say. Yes they would, but what are these souls who have given their entire lives contributing to our world worth to us? We’re locking them away in less than desirable conditions at a time in their lives when we should be opening up their worlds in a safe way for them to enjoy the time they have left. We can, and should, do better.