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The In-Charge Stage of Care ©

... In terms of the last stages of care the role of parent and caregiver are not that unlike, except that the process is in reverse for the caregiver.  

Childhood Development: Infancy, birth – 15 months:  (Reisberg, Figure III)

The parent’s role is to nurture, bond, and take care of every aspect of the baby’s care. The child is totally helpless and unable to provide any assistance in any part of its care. The parent is totally in charge of all the decisions that affect that baby’s life. The parent doesn’t question that role and no one will question the validity of their role as the ‘one in charge.’

Dementia Deterioration: The last stage of care - Stage 7 on the Reisberg FAST Scale:

The duties and attitudes during the end stage of Dementia care are the same as those involved in infant care. The role is to nurture, bond, and take care of every aspect of their physical care. They are totally helpless and unable to provide any assistance. They give clues to needs similar to the ones available to infants. They make noises, some grimaces, and occasionally can move an arm or hand to punctuate their need for attention. They are unable to make even basic needs known and like any new parent, it doesn’t take you long to learn their language. You learn what certain motions and sounds mean. The main point, is that you are totally in charge and responsible for all the decisions that affect your person. You don’t question that role and the validity of that role as the ‘one in charge,’ is without question.

The In-Charge Stage of Care is Characterized by: 

The Deterioration of Involuntary Brain Function

 Involuntary:* a.[L.L. involuntarius; L.in-priv., and voluntarius, willing, from voluntas, will, choice, from the root of velle, to will.’ Not voluntary; specifically, (a) not done of one’s own free will.; not done by choice; (b) unintentional; accidental; (c) not consciously controlled; automatic; as, digestion is involuntary.             
Webster’s Universal Unabridged Dictionary of the English Language 

The family member can no longer participate in any phase of their care or decision making process.  In some ways the choices become easier for the caregiver at this time because the care tasks become more routine during this phase of the disease.  And while you may feel the continuing need to explain your choices and why you do what you do, which is a form of respect for your family members as human beings, you no longer feel the need for permission to make the choices, and this can have a freeing affect on your ability to function.

The pacing, the verbalizations, the repetitive (ritualistic) behaviors have passed. Your sleep deprivation, the hardest part of this disease to deal with for a caregiver, has also passed because once they are chair-bound and bed-ridden they can't pace and get into trouble and for the most part they tend to sleep more and more as the illness progresses.   They stay where they are placed.  

I tell people that once they are through the middle stage of care things tend to get more sane.  Other caregiver who have made it through the mid-stages echo the same thoughts.  In fact, this may be the time you want to bring them back home if they've been institutionalized.  If you can afford help and you want them to be able to die in their own beds, that is not an impossibility. 

• Most of us find a routine that works by this time and with help, whether it is paid help, family help, or volunteer help the tasks settle into a level of predictability. 

• Life takes on an aura of normalcy even though your definition of normal is quite different from what it once was.  

• The furniture can be re-arranged, the pictures and mirrors replaced on the walls, and the treasures that break or can harm returned to their accustomed spots. You can have your home back as it was before the disease began, except you now have a hospital bed, a wheel chair and assorted paraphernalia that aids in personal hygiene maintenance. There is no need to turn your home into a hospital and there is no need for it to smell bad because of the hygiene care you now provide.

While there is no absolute manner in which the losses occur at the onset of this illness, by the time the person has moved into the mid and late stages of the illness, the losses are inevitable.  ...see the Reisberg Scale and the Gwyther Scale for reference.

The only differences are in the severity, the order in which they occur, and the quickness with which they happen.  By the last stage everyone is incapacitated and unable to either express their needs, or care for their needs.  The pattern of deterioration is reduced to the basic functions of the body during this period and death is inevitable.

All of this happens because the brain is no longer able to connect with the body and make it work properly. The involuntary functions of the body that the brain controls such as heart rate, pulse, the respiratory system and digestion are now affected and in the end, with the brain no longer regulating the vital organs, the body shuts down, and death occurs.

• Interest in food wanes, feeding is more arduous because of the problems with managing chewing and swallowing. Foods need to be processed more and it takes a while to figure out just what they will eat and how to maintain good nutrition.

• Weight loss happens even with adequate food intake because the digestive system ceases to glean appropriate nutrients from the food and they become emaciated in spite of your best efforts.

• No part of their physical movement is at their own beck and call.  They cannot turn over in bed without help, they tend to list to one side while sitting and need to be propped up lest they fall over and out of their chairs.  They are most likely chair-bound and bed-ridden at this stage.

• Their need for the physical world shrinks to one or two rooms in the home during this period because they lose interest in their surroundings and the surroundings themselves offer little stimulation.  This is not to say they don’t respond to the familiarity of sights, sounds, and people but that response is comparable to that of a small child or infant’s needs rather than that of an adult.  In fact, too much stimulation can be upsetting to them just as it is with a small child.

• They become extremely frail, problems with their swallowing reflex develop, their respiratory system, and their immune system will stop functioning at full speed and leave them open for pneumonia, septicemia, and other infections.

• Muscle density changes from inactivity and muscles that work in opposition to muscles that bend arms and legs will stop working and the body will begin to pull into a curled position.

• The body becomes very stiff and moving them becomes a slow methodical process in order avert the aching and the bruising that accompanies the stiffness in joints. They will be unable to sit or lie down without your help in bending and unbending them.  The brain has lost so much control they do not know how to bend anymore without help and you will hear caregivers talk about their family members ‘forgetting’ how to sit.

• Surprisingly they will not be able to balance or stand unaided, but they often retain their ability to hold their weight standing as long as they are steadied by someone else.  I was able to actually walk Tom into the shower each morning as long as I supported him with my body behind him and kept a steady safe grasp of his arms and used my own weight to carry his.  He lost the ability to hold his weight in a standing position only four weeks before he died.  A friend reported to me that her husband began walking again after being chair-bound for over a year. The staff in his nursing home was amazed considering the atrophy of muscles expected from inactivity. He needed someone to steady him but he walked for a week or more before losing that ability once more. He died shortly after that episode.

• Circulation will be affected, the skin will lose elasticity and become subject to easy bruising, pressure points and bed sores.  Moving them from bed to chair can cause a bruise.  Holding their arms while dressing can cause bruises.  Not moving them frequently enough in bed can cause bed sores.   The skin can break down at an alarming rate.  Wherever the body touches the bed covers, a pressure point can appear.   It begins as a reddened area and can progress very quickly to a severe bed sore both deep and infected which then involves medical care.  Light massage, lotions, proper skin care are vitally important.

• Teeth and nails need constant attention.  Oral hygiene becomes difficult because they’ve lost their ability to spit and rinse, open their mouths on command or understand the process involved.  Gums need particular attention.  If they become inflamed feeding is then affected.  Because of the weight loss, dentures will no longer fit and probably add to the problems anyway.  Nails are also cause for infection if not clipped regularly and carefully, and they can scratch themselves and you, if not keep short.  If your person has diabetes, the nails must be cut by a qualified person because of the danger of infection.

• The immune system will be at risk and while there are many doctors and nurses alike who insist that they don’t die of Alzheimer’s, they die of respiratory failure or heart failure, the fact remains that my husband would probably still be alive had he not developed Alzheimer’s Disease.   In my mind there is no doubt that Alzheimer’s kills.  No one escapes the progress or the inevitability of death from this illness.

• Speech is reduced to grunts and moans. There is little facial response because those muscles no longer work.  However, on occasion, a laugh will occur, a word will escape, a remembered ‘look’ will happen and sometimes they cry.

As Debilitated as they are they still respond to love

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They respond to being held.

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They respond to soft, caring voices and accepting body language.

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They sometimes cuddle or stroke a pet or stuffed animal.  A friend’s mother began carrying around a baby doll and the doll’s name was ‘Baby.’

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They respond to soft massage, aromatherapy, combing hair and stroking the body which is relaxing and comforting and good for circulation and skin condition.  The reflex of holding on to a caregiver’s finger happens, one of the first things an infant accomplishes.

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They respond to their favorite music, most appropriately the music from their youth. Our earliest response to music is actually of the music our parents played when we were infants. Its familiarity will still linger.  Some of the meditative pieces on the market also bring a sense of well being.  However, keep in mind that new age music is not a part of their distant memory and there are recordings of old standards that are just as pleasing and restful and certainly more recognizable to your person.  Tom enjoyed Sousa Marches among other things.  In actuality, the steady rhythm, the predictable cord progressions and emotional attachment had the same effect as old hymns and those considerations are probably more important in the selection of music than anything else for our people.   (Rhythmic Medicine, Music with a Purpose,  Janalea Hoffman)    

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I believe it is therapeutic to bathe them regularly.   There are shower chairs and tub transfer benches that aide in this task.   Regular bathing has to have the same salutatory effects bathing an infant has.

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They are for all intents and purposes as vulnerable and as needy as a newborn infant and like a newborn they still feel love and acceptance and I don’t doubt that they also feel loneliness and fear and hunger and pain.

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"When my mother developed pneumonia, she lost her swallowing reflex and was most certainly expected to die within days.  Her only means of communication with me left was to grasp and hold on to my finger, the exact same reflex a new born infant has.  I sat by her bed during those last days, talking to her, playing her favorite hymns on the tape deck I brought to her room in the nursing home, our emotional contact validated by her remaining ability to hold on to my finger.  Were we both comforted by that one, last, seemingly insignificant act?   I leave that to you to decide."

Debi O., Caregiver

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