Red Lines

Caregivers make decisions regarding every area of living both for  their loved ones and themselves.  Some are more difficult than others.

Though not inevitable, a decision whether to place your loved one in a Long Term Care facility will arise.  It is better to face the prospect sooner rather than later and learn every aspect of such a move before it becomes necessary.   As I write this, winged dragons are dancing in my stomach.  It is perhaps the most difficult decision a caregiver will ever have to make.

Thank goodness there is no dearth of information, advice, counselling, and help.  They all agree as to when you have to consider this option and the indications you cannot, must not ignore.  The major ones are:

Wandering: Nearly 65% of people with dementia will wander. There have been reports of patients being found a hundred kilometres or more from home.   There may be some elusive memory that triggers the wandering but really there has to be no reason.  That is the nature of dementia.

Falling: Dementia affects mobility especially in the later stages.  This is a particularly worrying one as it involves the safety of your loved one.  Sometimes the situation is aggravated by osteoarthritis, vision problems or other underlying health issues.   Additionally, the carer may not be physically able to care for a loved one who has fallen.  There comes a time when frequency will dictate a move to a more controlled environment.

Aggressive behaviour:  Here the patient becomes a danger to self as well as to the carer, family, friends, and strangers.   This is a crisis situation.  Safety becomes the major consideration.

Sundowning Syndrome:  The darkening day, night time or plain confusion between the two may result in this syndrome which manifests itself in major anxiety attacks and very aggressive behaviour.   This syndrome can put the caregiver in a very deep depression, as well as physical danger.

Escalating health care needs:  There may come a time when the caregiver just cannot tend to their loved one.  Their own health issues, their lack of training, their physical or emotional state becomes so fragile that caring for another becomes just too much.

There is no one to help:  When everything falls to the one carer then burn-out is almost a given.  The disease is such that friends and family may slowly disappear leaving just the one to cope.  Depression is the result.

The caregiver’s own health issues have multiplied, or become worse:   The caregiver now needs a caregiver.  Plain exhaustion will only aggravate the situation to the point where neither carer nor patient  can function.  One or maybe both need care.

Complexity of needs of the person with dementia:  In the later stages of dementia so much may be needed by your loved one such as walking aids, complex medications, help with eating, dressing, toileting, speaking, and equipment to help with basic daily living.  It becomes overwhelming for the caregiver to have their loved one living at home.  The decision must be made to place them in a facility where specialized services and equipment will be available.

Much credit is due the Alzheimer’s Society of Canada for the above.  Nearly every piece of research will echo these reasons for considering  a long term care facility but the Alzheimer’s Society has brochures on every aspect of this gut-wrenching decision and there are many to contemplate.

Despite the clarity of these red lines I believe each caregiver may have  additional ones.  Those would be personal and particular to the relationship they have with their loved one.   I bow to the expert advice; however I have two to add that is specific to my Bert and me:

My Bert does not know me:  This may sound trivial but our life story is such that the day my Bert looks at me and does not know who I am will be the day I know he IS the disease.

Physical abuse:  That is the culmination of aggressive behaviour.   He curses?  So, what?  He is angry?  He has a right to be.  However, the day my Bert lifts his hand to strike me will be a definite red line.  Hitting a woman, any woman is not in my Bert’s DNA.   That would be Alzheimer’s Bert not my Bert.

These two situations would ready me to make this most difficult decision.  My rationale is this:  As a caregiver to my Bert I am the one fighting the disease.  I am the one pushing back with love, care, hope, creating an environment of calm, kindness and comfort.  My Bert cannot fight against something he does not understand and which robs him of himself so I fight for HIM.  This new entity would be an alien, a walking disease.  It would be unbearable.

The Meander:  If I ever have to make that decision, I will do it out of love.  My Bert deserves that.  I will do my utmost to ensure my Bert gets the best care for his daily needs while I continue to care for his beautiful soul.  That is one thing Alzheimer’s cannot take from my Bert.