The  Safe   Room  

*  The  Safe  Room  

...excerpt from "he used to be Somebody," 

"During the transition from the mid to late stage of Tom’s illness, our bedroom became the safe room in our house with only the bed and a dresser left in place and wall to wall carpeting with double padding on the floor to cushion falls. Overhead track lighting was installed which worked with a dimmer switch in order to keep a low grade light on nights he felt compelled to pace.  All wall plugs were covered and all lamps, pictures, mirrors and anything that might catch his attention or be potentially dangerous were removed.  I played soft music through the baby monitor.

The safe room also served the purpose of allowing Tom a place where he could pace safely while I napped and a place where he could go when he was agitated without danger of getting hurt.  The lack of stimulus in that room tended to dissipate whatever it was that had him in a rage because there was nothing in there to distract him.  He even seemed to like the quietness of that room, often seeking it out on his own during the days when he was still walking on his own.  It was also a place where I could put him when I needed a few minutes to step away from all the activity his body generated.  It never seemed to take more than fifteen minutes of quiet for either of us to rejuvenate ourselves.

The period in his illness that necessitated this room was the hardest on me. It was like having a six foot toddler on my hands.  Nothing that was within his reach was safe.  Having had the recent experience of watching my grandson move into the terrible two’s, the activity of which was so much like Tom’s during that period of his life, gave me a new appreciation for what I had been dealing with.  It was the same energy, the same constant movement, the same ability to get into everything especially things I thought I put out of reach.

On bad nights when he was ‘up and moving’ I slept across the hall, or tried to, with an infant monitor on my bed table and ear plugs in my ears to blot out the noise he made, an interesting conflict of ideas now that I think about it and one that never really worked anyway.  Tom’s ability to get my attention far outweighed anything I came up with to find quiet.  Rattling the closet doors was his personal favorite.  I was actually desperate in my need for sleep.  While Tom had no trouble getting out of bed he was totally unable to get back in bed without help.  So, no matter how much my body ached for sleep, I was up at least two or three times a night to assist him or know that if I didn’t hear him moving via the intercom, he was frozen in a standing position staring at the bed or the wall or the window unable to move in any direction without help and probably fearful as well.

Before I set the room up I had no peace and no break unless I physically left the house and that necessitated having someone else watch Tom.  His constant movement, the ritualistic noises he made, the inability to watch a television show without his body moving back and forth in front of the screen was unrelenting. I often felt the need to scream. Sometimes I took a shower and did just that.  Sometimes I went outside and raked leaves.  That room made the difference between being in control and feeling victimized."

What exactly is a 'Safe Room' and why is it needed?

I have brought the concept of the 'safe room' up during several talks I've given and in each and every case someone accuses me of incarcerating my husband.    During a training session for support group leaders, (one event I keynoted), a group leader shared that she was questioned by social services for not reporting the fact that a caregiver admitted to locking their person in their room in order to take a bath in peace.    This was shared during a support group meeting and another caregiver took it upon herself to call social services and report her as abusing her father.   This was a caregiver facing the very early stages of Alzheimer's with little if any understanding of what this disease brings to the reality of this care experience.   It also needs to be pointed out that the social services department is too often peopled with professionals who also don't know what this disease brings to the caregiving experience.  Their job is investigate every complaint.    The end result of their investigation is too often influenced by a predisposition to find fault, particularly with those tending to this disease.    This caregiving situation is ripe for problems in that the caregiver is dealing with an elderly, disabled person unable to defend themselves or express their feelings.   

In this case the support group leader was able to explain why the caregiver had 'locked' her person in the room, that the 'lock in' didn't last for more than a few minutes and invited the particular social worker to enlighten herself about the realities of this disease.   

• It needs to be pointed out that many mental health facilities are re-instating the use of what used to be referred to as the 'Padded Cell,' as a means of cutting down on the over use of drugs as the preferred means of restraint.    Even these facilities are finding that a quiet place to unwind is, in many cases, as effective, if not more effective, than traditional restraints and drugs.  

• The concept of a "Time out," space for hyperactive children has been in use for years in homes, schools, and clinics as a means of helping children learn boundaries.  By removing them form the volatile situation which triggered their episodic behavior, they have more of a chance of learning to process their outbursts in a more productive way.

• "Time out," has also become an accepted part of child rearing, used in place, I might add, of other the more corporal means of altering childish behavior, that I grew up with.

• For all intents and purposes, until a child is old enough and tall enough and able to reach a door knob and develop the strength to turn it, they are ostensibly 'locked' into a room every time a door is shut.    We do not view this as incarceration.   It doesn't even enter our minds to consider it incarceration and yet in every sense of the act it could just as easily be seen that way.  

• Amputees and wheel-chair bound people with late stage ALS, Parkinson's and MS are also just as vulnerable when a door is shut.    Their caregivers aren't castigated because this barrier exists in the reality of profoundly handicapped people, it just means that everyone needs to be mindful of the ramifications of a closed door.   

• Because our people can still open doors and wander and get into trouble, the lock is only a means of keeping them contained long enough for them to wind down and for the caregiver to get a few minutes break from all the activity.    Its use is no more a invasion of their rights than it is to put a child in their room for time out.   For what it is worth, institutionalizing them, and restraining them with drugs could also be considered an infringement of their human rights and I doubt if Social Services is ever brought into these issues.   

To take what is essentially a common sense way to work within the confines of the constant supervision that Alzheimer's people need so that their caregivers can get a measure of peace and quiet for a proscribed amount of time and label it as something insidious is just plain stupid.   

I am not talking about locking someone in for hours or days at a time.  

I am talking about a tool that may make the difference in being able to maintain a person in their own homes longer and which may make the difference in how quickly the caregiver wears out.   

I am talking about mini-respite breaks and having enough time to take a bath in peace, start dinner, and do what often has to be done around the living space which can't be done when the person is always underfoot.   

I am talking about doing this as a means of giving the person with dementia a chance to unwind at their own pace without the over use of drugs which is, in so many ways a more humane way to deal with the hyper-activity that so often accompanies this disease.

The "Safe Room,"  is not jail.   This ' space' gives the person with dementia a place devoid of the stimulation that is so very stressful to them.  It is not intended to be anything more than a "Time Out,' place where the Alzheimer's person can unwind and the Caregiver can rejuvenate and having been in this position, it is amazing how helpful it is to have even a few minutes away from the madness of this phase of care.   If I did nothing more than sit quietly in my back yard for a few minutes and have a cup of tea, it allowed me the time to take a breath, put the stress into perspective and face our reality with renewed strength.   In that it is a tool to be considered and utilized when necessary. 

It is time to rethink some of the junk that gets thrown in the paths of caregivers by people who live on the outskirts of our reality.  We are taking heroic measures to insure a safe and healthy environment for their family members facing this disease and we don't need to be castigated for what are essentially common sense actions.  

~*~

How to set up a safe (Time Out) space 

for your family member. 

You might want to place one side of the bed up against a wall in a corner during this period.    Note which side of the bed your person uses to get in and out of and put the other side up against the wall.   

Putting the bed in the corner forces them to use only the side they are most comfortable using for egress and entrance to bed.    

It also leaves one less surface for them to fall into when pacing.   

It is harder to pull covers off if they are tucked in on one side and held in place with the walls.  

It leaves more space for walking and the eventual wheel-chair. 

Remove unnecessary furniture, book cases, knick-knack shelves, pictures, mirrors, etc. from the walls.  

I installed overhead lighting with a fairly inexpensive track system I bought in a local hardware store.  I removed anything that had a plug and wire and taped anything that couldn't be removed with duck tape.

I took out the phone.

I installed a peep hole in the door which gave me a 180° view of the inside of his room without having to open the door and disturb his sleep, if he was sleeping, or incite his combativeness if he was still in the process of winding down.  This product is easily installed and information on it is available in the links section.

I installed a dimmer switch which allowed me to keep a low grade light on at night when he was up and pacing.

I turned the door knob so that the lock release was on the outside of the door and I locked him in at night so that he couldn't wander around the house if I slept.    

If possible, put a lock on the closet doors.   If they are sliding doors rig a pole or brace on the floor to deter opening them.  Closets are one big booby trap for our people.   They can get tangled and end up on the floor with the clothes, boxes and whatever else you have stored in them.  Never leave anything dangerous in the closets.   Heavy items stored on the shelves can injure them if pulled down.

I changed the windows to Plexiglas, left only the bed and one dresser in the room.   When my husband began pulling drawers out and on to the floor, I temporarily removed that as well.    When that behavior abated, I returned his dresser to his home.  

When he began rattling the doors of his room, I painted it and the woodwork the same color as the walls.    Because of his perception problems this deterred his constant need to jiggle and rattle because he had a harder time finding things to jiggle and rattle.    Without the distraction of a white door against a blue background, his urge to go for it was abated and he tended to calm down sooner.

By now, I provided a haven for myself in another room where I could sleep.   His constant moving, getting in and out of bed, the myoclones (uncontrollable jerking) made sleeping with him almost impossible.  

I bought a baby monitor and used the monitor to also play soft relaxing music which was piped into his room when he was active.   I did not play mindless 'New Age Music,' which tended to annoy him.    Some people find it relaxing, some don't.   He didn't.   Harkening back to his catholic roots, I played instead, Gregorian Chants, The Pachelbel, and other classical pieces including some of the more sedate Irish pieces.    He also liked ballads from the 'War Years' and ball-room dance music and on occasion a Sousa March.   He loved the Sousa Marches.   They made him smile.

On most occasions, less than a half hour after a combative episode I would re-enter his room to find him looking out the winder, or sitting quietly on the bed.   I'd be greeted with a smile and on most occasions a hug and kiss as if I had just returned from a journey.    Whatever it was that had triggered him off was long gone, I'd had my quiet time as well and we could start anew.

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