What's Working For Us

As this disease has progressed with Susan, we have attempted to work with it and with her to ensure her safety in our home. I hope that by sharing a few of the “solutions” that we have come up with around here, it might help others who face similar dilemmas.

Here they are:
-First, we were forced to re-activate our home security system. Now we are alerted by a jingle when outside doors and windows are opened. It is vital that I know when Susan (or anyone else) has penetrated the outside world!
-We no longer allow Susan in the kitchen. Since the entries into our kitchen are too wide for options like baby gates, we often barricade them to keep Susan out. It keeps all of us safer and helps ensure sanitation in the food area.
-Cups are color-coded. Hers are green and blue. That relieves the stress of finding them in precarious places or with teeth floating in them. The fact that she sips incessantly from the same cup all day long is no longer a worry. And lipstick covered glasses don’t gross me out in the same way they did before. It’s ok. Only she drinks from hers.
-We set her cups strategically at the front of the cupboard; if she reaches in, she easily chooses the one in the front-HERS!
-Baby guards installed on certain cupboards (including under bathroom sink) have worked great! In fact, I think it is time to add a few to new cupboards now. (Good idea Kyle C)
-A latch-lock was installed on the outside of her bedroom door. It is there for emergencies only! It has been used when she is out of control and needs a break to settle down.
-A real phone is in her bedroom that is not actually hooked up. It makes her feel normal but keeps her from calling 911 every other day!
-Her own familiar possessions furnish her room; that creates a feeling of familiarity, comfort and safety for her.
-We try to keep things in her area the same; change aggravates her senses.

-A grotto door (or wine cellar door) was installed between the bed/bath hall and the main house. It is a great option because it doesn’t close her in, yet keeps her safe from: outside doors, the kitchen, the fireplace, the pantry, chemicals and whatever else threatens her. This option became necessary as her judgment worsened and watching her 24/7 proved to be simply impossible. Now she has the freedom to roam in a safe zone.
-No drinks late at night to help keep her from having accidents in her bed, using a container in her bedroom, or being up and down all night (hasn’t worked yet, but hey, we’re trying!)
-Depends! Although she still attempts to use the toilet, this helps with incontinence.
-We hung a calendar and pegboard in her area to remind her of her schedule and what day of the week it is.
-Photos of those she is familiar with. These days she particularly enjoys older photos, not recent ones.
-We stick green and red stickers onto the power switches of her electronics to allow easy recognition of on and off switches. As usual, green means ‘go’ and red means ‘stop'.(Stefanie’s brilliant idea)
-We purposefully created nice views out the windows for Susan since she likes to look out. We put her favorite plants and bright flowers in pots that adorn her view. Also, bird feeders and birdhouses are hung within easy view, for her entertainment. We added comfortable seating areas outside where she will occasionally go sit and have a snack or a drink with another person.
-Her own chair sits in the living room for just her to use (covered with a towel). Susan is territorial and wants her own things. Besides, having her own chair keeps her little messes off the rest of the furniture.
-We had to install steps on the side of our vehicle to make it easier for her when climbing in and out.
-Our newest solution is the three-way potty. Right now it sits above Susan’s toilet with the bowl removed. The hope is that it will aid her in feeling secure on the pot and everything will start getting into the right place rather then the floors and walls. My fingers are crossed! This three-way pot can evolve as Susan’s disease does and can function as a bedside commode as well.

There are many issue we are in the process of figuring out solutions for, such as: a continually overloaded septic tank (who knows what she’s flushing!), constant accidents of all sorts on every carpet in the house (other then my personal bedroom), broken locks and door handles on most doors because of her incessant fiddling and trying wrong keys and jiggling, bathroom sanity (ugh!), window coverings (we have already had to replace every shade on the back of the house because she fiddle them to extinction and now we’re working on keeping her away from the new ones), she broke to smithereens and apparently urinated on my Japanese shoji screens. So, this whole ‘idea journal’ is definitely an ever-evolving work in progress!

Another really important issue has been her wardrobe, which originally required an almost total overhaul and continued tweaking and updating as needs present their selves. I plan to discuss this more in another entry since there is too much on the subject to include in this one.

(Note: I am reminded about the costs of simply maintaining normalcy! It can definitely be overwhelming. Just do the best you can and so will we. I’d love to know what others have tried and would be grateful for any suggestions out there.)