Things to consider removing, covering, or changing

Before I get into this section I think it is fair to let you know that each and every change you make in the environment tends to make you feel a little sad.   Even though these changes might help your person navigate the home a little easier, and even though some of these changes will actually make your own life a little easier, there is always an element of mourning attached to the indefinable feelings of giving in to the illness.    I allowed Tom to fiddle with pictures and wall hangings way beyond good sense.   A good part of my day was spent adjusting them, replacing them and feeling aggravated about doing it.   I cannot count the times I rearranged the candle sticks and replaced the candles because he would just sweep them over as her passed the buffet.   Not out of meanness you understand, but out of an uncontrollable urge to reach out to touch them as he passed.   

The day I removed the pictures, and put the knick-knacks away and rearranged his walk space into a barrier free one, I felt defeated.   I felt defeated by the illness and by yet another compromise I had to make on his behalf, a compromise that affected me personally.   I loved having my 'things' about as much as Tom had.    I liked the way the house looked.   

The good news, if that can even be a concept in this illness, is that once the frenetic behaviors that accompany the middle phase of the illness pass  'The Things' can come back out, the pictures can return to the walls, the furniture can be rearranged.   And for what it is worth you will also feel a sense of sadness at this time as well because this too will mark another milestone in the progression of this disease.    Every change made translates into yet another way to say goodbye.    It is the nature of this disease.   These moments pass easier if you recognize them for what they are.    Recognizing the feelings in terms of grieving is the first step to processing them and getting on with the tasks of care.    All I can say is that it helps to transfer your focus to your person and their needs for nurturing when the chaos begins to get to you.   In reality, the 'things' are just 'things' and these are changes you can deal with.

I am also offering these suggestions as things to consider doing if and when your person develops the behavioral problems that too often accompany the mid stage of this disease.    So much of that behavior is triggered by the environment and how they perceive it.    I hope this list will offer you a starting point at giving you something you can do to ease the stress of this time in care.

~*~

Reflective surfaces such as mirrors.   Unless the mirror becomes a friend, which sometimes happens, they generally present a distortion potential to the Alzheimer’s brain.  The brain loses the ability to distinguish between what is a reflection and what isn’t.  Therefore, the room looses its dimension because of depth perception problems and one other person might appear as many, all of them privy to very private doings such as the removal of clothing for bed or bath and the occasional pad switch.  This can only add to the anxiety of a person in the Mid-Late stages of this illness.   

If you have a medicine cabinet in place in the Bathroom, you probably won't have to remove or cover it because it only reflects from the shoulders up.    Your being present in the room won't be reflected with the same magnitude as it is with the full scale wall size mirror that is so prevalent in most bathrooms these days.   Should problems arise it is a simple matter to put a hand towel over the mirror when your person is in the bathroom.

Put opaque coverings on all windows at night.  Blinds, inexpensive shades or curtains will do and make sure they are covering the windows before you take your person into the room in the evening.  When lights are on in the evening, windows take on the reflective value of mirrors.  While our brains distinguish the difference to the point where we don’t even notice the reflection, the Alzheimer’s brain does not.  Bed time and bath time in the evenings can be traumatic enough without your person having to deal with the reflected images of a number of people in the room with you.

Hang cord pulls out of reach.   Make sure the string pulls on the blinds are wrapped around a hook as high on the wall as your can comfortably reach.  Alzheimer’s people can become entangled in them with their arms and necks the same way a toddler can.   Keep shade pulls simple.   Leave off tassels or anything that might capture your person's attention.

Curtains present a hazard if the poles aren’t fixed to the wall properly.    Alzheimer’s people can grab on to them and pull with amazing strength and a pole coming down on the head can be dangerous to them and to the caregiver.   Tension rods are a real  'no, no'  if your person is at all active during this phase of the disease.  

You might want to consider changing accessible windows, such as the ones in the bedroom or the bathroom with Plexiglas.  These two rooms more than any other are the scenes of catastrophic reactions.   Falling into and breaking a glass window is not something you want to deal with.   If your person remains docile and co-operative this will probably not be a problem.  If you person tends towards combativeness this is something to consider.   As a rule of thumb, it is always better to be prepared.   I personally had a near catastrophe happen.   Tom caught his foot in an empty plastic bag on the floor while I was in the bathroom finishing the cleaning up after his bath.   He fell into the window and it smashed.   Fortunately, I got to him and pulled him away before a very large shard fell.   He could have been very badly injured.  I could have been very badly injured for that matter.   I put Plexiglas in that week on both windows in his bedroom.

Glass patio doors are a real problem.   In daylight the Alzheimer’s person tends to walk into them because their brain does not distinguish them as anything other than open space.  Stickers on the doors will probably be ignored by their brain if they see them at all.   At night these doors are a full wall mirror bringing all the problems mirrors bring to the mix.  Keep them covered once the perceptual problems become evident. Opaque curtains that let light in but cannot be seen through may solve the problem of letting natural lighting into the home.   These can be purchased inexpensively.    

Photos or pictures covered in glass also present a problem. At this stage of the disease you want to simplify their walk space and living space as much as possible. The distortions their brain presents to them interfere with them being able to enjoy a treasured photograph or picture. In fact a scenic view may appear as a window to an actual view to them and the reflective glass on it will act as a mirror in the evening with the lights on. Remove them and save the photos for a reminiscence period another time when you are in control of the situation, such as looking through the family album.

Knick-knack shelves, sconces, candle sticks, crystal vases, anything that can be fiddled with, taken off the wall or knocked off and broken should also be removed.    If the caregiver is that attached to these things, put them elsewhere in the house or apartment where they are out of reach of your family member.   In a sense you are ‘proofing’ your home the same way you would for a toddler, keeping in mind that your person is probably at least 5-6 feet tall, with a reach.

Throw rugs present another sort of problem. Aside from being something to trip over and catch the foot on, they often present themselves as a hole in the floor or an obstacle that must be stepped over.  A clean surface, be it a hard wood floor, wall-to-wall carpeting, or tile is best as long as it is a solid color.  The Alzheimer’s brain has difficulty dealing with patterns such as geometric shapes, floral rugs with a wide variance in colors and shapes, highly patterned surfaces, or elaborate borders around the floors, etc.

Designate the space that is off limits without supervision and either lock those doors, or put up baby gates to keep them out.    The baby gates should placed high enough so that your person doesn’t fall over them. Remember they are taller than children for whom these devices were developed.  I found the use of baby gates annoying and time consuming to use.     

I found that a simple bungee cord placed across the doorway at waist height was sufficient to keep Tom out of any room I didn’t want him in. I put two sturdy eye hooks on either side of the door and simply hooked and unhooked the cord when I needed to enter the room.  Tom would bounce on the cord and that would signal him to stop walking.  The clip fastener I used to hook and unhook the cord was just complicated enough for him to not figure it out. I was able to keep his visual view of the whole environment open to him while effectively keeping his walk area secure.

I tooled all the locks in the house to the same key which I wore around my neck.   Any hardware store can do this for you.   You don't want them accidentally locking themselves in a room and you at a loss to find the correct key to get them out.

I had a dead bolt installed on the access doors to the house that worked on a key only.   I purposely did not get a lock with a latch or handle.  When the door was locked there was no way to open it without a key.  The key was around my neck on a chain, and an extra key was on a hook on the top inside of the door out of Tom’s reach for egress in an emergency.  A neighbor/friend held one extra key, other neighbors were appraised of a key hidden on the outside of the door for emergency access, and my family members all had a key.  When it became clear that Tom had no interest in the door or the lock, I left the key in the lock at all times when we were home to facilitate our egress in an emergency.

I also switched the door lock from the inside of his bedroom to the outside in order to create a safe, secured space for him.    This was done when I set his room up as a 'Safe/Time Out Space,' where he could pace, wind down after a combative episode or simply be, when I needed a period of time to bathe, or busy myself where I couldn't totally supervise him, such as in the attic, the back yard, or the basement laundry room.  There are times when the caregiver needs a short break if only to sit and stare at the wall for a few uninterrupted minutes.   

The spring lock was moved to the outside of the door, (my side), so that anyone could get into this room in an emergency and he was unable to roam the house if and when I fell asleep.   This is not incarceration.   Let us keep in mind that children are ostensibly 'locked' in their rooms regularly by the simple fact that they cannot reach the door knob or operate the door knob.   Where our family members are concerned, their strength and residual memory make locking the door a necessity at times.

While containment was certainly a consideration in making this decision there was also an other reason.  Even though he was unable to lock or unlock a door with any regularity by this time, it wasn't impossible for him to 'accidentally' lock himself in a room with me on the outside scrambling to find a key to get him out.     

Until I developed this 'safe space' for Tom I was on a 24 hour a day marathon.    A few short breaks a day gave both of us a new lease on life.   His room was so peaceful, that he often sought it out on his own for periods of time, staying there with the door wide open.   These were often the only times he wasn't pacing.    This is a sensible way to insure their safety and yours.   Please link at the bottom of this piece to "The Safe Room"

Highly patterned wallpaper, towels, sheets, place mats, tablecloths, can all add to the confusion.   High contrast between baseboards, molding, doors and the rest of the walls can also add to the problems of navigation and manageability.   Highly styled metallic wallpaper may present depth perception problems, and paper with Animals and flowers may appear as real and account for some of the problems you have getting your person into the bathroom or bedroom.   Geometric shapes on the walls also present problems because the brain begins to loose the ability to connect lines.   

Try to create as simple and as uncluttered an environment as possible.    If their behaviors are a problem in moving them around your home the walls and how they are decorated may be part of the problem.   If need be, paint over the paper or cover it in some way.    Use your imagination and you are the one who has to decide just where you draw this line.   One woman I know bought cheap muslin and taped it over her hallway paper which was highly patterned and the area in which her father tended to blow most regularly.   The behavior abated dramatically after the birds, the trellises, and the flowers were covered.   I had Tom banging on the door constantly while he was in his bed room until I painted the doors and the woodwork the same color as the walls.   Rattling the doors wasn't about his wanting to get out as much as it was about having something to grab on to, in this case the door knob.    The rattling stopped because he had a harder time finding the door for one thing, and his combativeness seemed to dissipate quicker because he wasn't distracted by the white door on the dark blue background.  

Lighting fixtures  that can be knocked over or smashed should be moved out of reach and they are always in danger of tripping over cords.  If you must have lamps, secure the cords to the floor.   Duct tape works.   It adheres to rugs as well as flooring and when removed, the adhesive can be cleaned up relatively easy with a proper remover solution without damaging the flooring.   I installed overhead track lighting in the bedroom with a dimmer switch.   Tom could now pace without fear of tripping over cords or falling into lamps.

I also installed dimmer switches in his bathroom.   If you have more than one bathroom, designate one for the family member's primary use.   Look to the section on "Organizing the Bathroom for Incontinence Care."

It goes without saying that power tools, saws, kitchen utensils, poisons, soaps, cleaning solutions need to be locked away.   As is said on the home page devoted to "A caregiver's View of Alzheimer's,"  we don't think twice about 'proofing' our homes for toddlers.    We work at providing a safe environment for them without all the emotional overlay of impinging on the rights.    On the other hand, we do seem to get hung up on these things in regards to our family members with dementia, even though the reasons for the precautions are exactly the same.   We make this job harder than it has to be.   We are only making the environment safer for a person who no longer has the ability to reason and that is all you are doing.   You are not demeaning them, you are taking steps necessary to insure their safety as well as your own.

After Tom was chair-bound I was able to repaint and put things back to the way I wanted them to be.   The pictures came back out, the furniture was re-arranged, the knick-knacks and the candlesticks were placed back in their accustomed places.   Tom's room remained his haven.  I maintained the simplicity of that interior until he died but I did return many of his treasures to the walls and dresser tops after he became chair-bound and bed-ridden. 

Areas to designate as off limits without supervision:   You do not want your person unsupervised in these areas any more than you would allow a toddler access to these rooms unsupervised.    The caregiver has enough to do besides follow their person around from room to room all day long.   Either lock the doors or put a barrier up, such as a baby gate or a bungee cord to keep them out.   There are ways to allow them visual access to their environment while limiting physical access.   Be creative, use your common sense, limit their access and increase your peace of mind at the same time.   

While facing these changes aren't easy, the result of these changes can make the job of caregiving easier.   Easing the caregiver's tasks insures a better and healthier relationship all around.    

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