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.)

Contemplating Dementia

Watching Susan’s battle with dementia has forced me into a sort of inner struggle about the whole thing. I have watched in wonder and asked “why” and “how” more times then I can count. My need to understand has carried me along a trail I would likely never have traveled if it weren’t for Susan. I have read books, met with strangers, spoken to doctors and nurses about dementia theories and care, hung out in hospitals, and searched my community for support.

Then there is the dreaded concern for my own husband and children since this disease is now in their family. My journey is not over, perhaps it is just beginning; but it has carried me to a place of personal conclusions. Conclusions that may (or not) be obvious when such a disease is starring us in the face, causing my lens into the future to appear to have gotten jarred along my way- jarred into an out of focus view. All that is clear is the step we are taking at this moment on this day of this journey of ours. This journey is a lonely one at times, but as I have lifted my eyes from my own steps, I have realized that there are others walking this trail- or a trail close by. There are unexpected persons who have come alongside, expected ones who are nowhere in sight. There is a God who carries me at times. All of us are moving along. We travel it together, Susan and I, this family, our readers joining in, you and you, this world, these people.

One thing about this journey that I want all of you to embrace is the clear fact that no two will suffer the same; each will have their own journey. Yours will not be ours; ours will not be yours. I have come to understand that every Alzheimer’s journey is unique. As peculiar as this might seem, I find myself extremely thankful to know that not every stage that Susan goes through is experienced by others suffering with this disease. In fact, I am happy to know (yes, even jealous!) that many persons with Alzheimer’s remain sweet and gentle and kind throughout their struggle. I have personally theorized that much of it depends on predisposition, even though I know this isn’t totally the case. I say this perhaps because it is true with Susan. In fact, much of what she portraits and projects into our path, frankly, is indicative of how Susan always was- long before any of us whispered the word Alzheimer.

Yes, I am saying what you think I am saying, however reluctantly. “Whew!” you might be thinking if you are a reader of my blog! “Thank God!” I understand your relief totally. Yes, much of what we suffer with Susan was, in lesser degrees, always present. I am trying hard here to not offend nor to be unfair to Susan. Certainly, (before Alzheimer)she had many good traits that I admired. She lived a fairly normal productive life, had a husband and five children, good jobs, was very fashionable in her own right and could grow beautiful flowers like no other!

I guess I am trying to say that we always knew there was something ‘not exactly right’ with Susan. Retrospect is always a clearer vision and from this view I may be tempted to label her lifelong behaviors with modern terms that we often throw around too easily, like: bi-polar, obsessive/compulsive, allusions of grandeur or self-absorbed. In fact, doctors have wanted to label her past with something; but what
good does it do now to psychoanalyze the old Susan? This is now. My only purpose is to give my readers deeper understanding into her behavior and to ultimately release some fears that my tales may create. Indeed, Susan seriously has Alzheimer’s. At the same time, Susan is just Susan! We love her that way.

(This photo, taken long ago, is of Susan and her husband. Those were the good days for her, I suppose.)

Home Safe?

Poor Mr. Ollie. After being 'missing' for about a week from a local nursing home, this 78-year-old gentlemen was found dead just across the street from where he went missing! How does one go missing while in the care of a local nursing home? Is it staff error or neglect? Security failures? Lack of proper planning and/or procedures? The truth is, I know very very well how extremely difficult it can be to keep track of a dementia patient. So, he had dementia and was confused; who in his life did not know that? They have reported that the facility was locked up for security, yet he got out!

Here in Oklahoma there are presently two other senior citizens missing that I am aware of. One has been missing since sometime around Christmas, the other since last Sunday. A Silver Alert was issued for Mr. Edward (88), who left for church on Sunday and has not been seen since. Sadly, I don't even think a year has gone by since another man went missing from a local care center and was found dead in a nearby body of water. It's just NOT acceptable!

Susan has walked away from this house many times. The good thing is that I am always aware of it and deal with it accordingly. Sometimes I just walk at a safe distance behind her so she can feel independent. Other times I stop her before she leaves the property. Susan's attempts to walk off have become so routine around here that even my granddaughter knows what to do.

A few weeks ago Susan again walked off looking for her car, as usual. This time she walked in a direction she had never gone before. Camera in hand, I stood where Susan
couldn’t detect me as she confidently walked toward my neighbor’s house. Victoria (my grandaughter), ran in the house and grabbed on her walking shoes before running back out the door. She flew right past me. My heart melted as I saw her dart toward confused Susan. She gently took her hand while saying things like, “Come on, Susan. It’s this way. Turn around.” Susan complied totally with the gentle leading of her great-granddaughter. I was so proud of them both.

Susan has always come home safely. Ollie did not. Let’s pray for the others who are out there somewhere right now, probably confused and lost. I hope they come across
kind gentle loving hands that will lead them in the right direction.

(Note: I just read that the Silver Alert for Mr Ed was cancelled last night at 12:30 PM. He has apparently been found safe, but there are no details as to where he has been all week. I just hope people were good to him.)<

Thought: The idea of placing someone in a specialized home to keep them safe seems unatainable to me right now. I thinks Susan would be in more danger there then she ever is here. Unless she were drugged down- no, we don't want that.

An Abnormally Normal Day

I walked into the kitchen last evening where Susan sat at the table (her back toward me) having a late night snack that Jeff had prepared for her. Upon hearing my voice as I spoke with Jeff, she asked me to come over to where she was sitting so that she could meet me. “Come on over here, Karen, I’d like to meet you!” she insisted. Since I had spent the entire day with her, I felt no need to formally meet her or introduce myself; instead,I spoke to her from across the room. She was in a good mood and seemed to particularly want to talk about our jobs at the factory. I played along. “What do we do at the factory?” I asked. “We make clothes!” I was hoping that would be her answer so that her confusion would make a bit of crazy sense. Really, many years ago she did work for a place called Margaret Fashions. All I know about it is that she was some sort of a boss…well, like she still tries to be around here!

I woke up early this morning to find her standing completely dressed (even her shoes), at the grotto door. She spied me down the hall and began silently but frantically hand motioning me to come to her! I knew this apparent emergency or drama that was attempting to unfold itself before my tired eyes- was a fraud, and I totally didn’t want to participate! If I ignored her she would start calling my name again (as she had just done until midnight!), so I dragged myself toward her door, without getting too close.

“Karen, they took my two babies!” She informed me in a half whispered tone, one Charlie’s Angel to another. Her eyes moved from the left to the right sides of their sockets, as if ‘they’ could be nearby. “Susan…” I began, not even knowing how to engage this conversation at this too early hour of the morning. If I had the energy I might have flipped my blonde layers around and gotten in the knee bent ‘ready position’ next to Kate (I mean Susan) and helped her find the enemy that was apparently lurking close by. Instead (and not nearly as fun), I just cocked my tangled head to one side as if I hadn’t understood her completely and simply said, “Really?” She continued with, “And I have not even eaten supper yet!” “Susan, you ate supper twice last night before you went to bed. Now it is almost morning and breakfast time will come soon. Go to bed and I will let you know when breakfast is ready.” Please!

Suspiciously, she looked into her own room and pointed. “Lie down in there? That room?” she seemed puzzled, maybe even suspicious, as if I were setting a trap for her. I looked into her lit up room, which didn’t appear to have been slept in since last evening. I was thinking something like, Kate, Jacqueline or whoever you are right now, get your @**#*@#! in that room before I call Charlie on you! But I actually said, “Yes. Your room! Right there!” She again looked suspiciously into her room before pretending to play along. “Well, if you see anyone will you tell them that there is a Filipino woman down here that has not had her supper? And will they give me my two babies back?” “Okay Susan. I will tell them. In the meantime you must go rest in your room so that they will be able to find you!” I assured her, despairingly playing along.

She appeared to go to her room as I went to mine, hoping for a little bit of peace and quiet before the day really began- just a little! But I immediately began hearing little sneaky noises calling me from her end of the house. I was concerned about her waking the others too soon, so I snuck out my door and peeped around the corner just in time to see her peeping at me from around her own corner. “Get to bed!” I shouted down the hallway, hoping firmness would convince her.

Yup, another abnormally normal day around here has begun too soon! Good morning to you all!