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In
terms of the day-to-day care, life actually gets a little easier for the
caregiver.
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You no longer have to
justify why you are doing what you do to them. There is far less craziness to deal with
because the progress of Alzheimer’s eventually erases the behaviors that
plague the earlier stages.
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You’re problem now is to
deal with the profound physical changes that occur and learning how to move your person enough to
keep circulation sound and skin condition good and allow you to take care of the
hygiene needs that continue throughout.
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After
initial panic which follows when the lose the ability to walk on their
own, you will be able to develop a
routine that works and it will remain fairly constant for the remainder of your
role as a caregiver.
I
found this phase of care involved a more peaceful existence for both Tom and
myself and
the unexpected boon was that I was able to get back to just loving him. It was
very much like caring for an infant, keeping in mind that this ‘infant’ had
a life time of experience floating around somewhere in his being. I had learned
to find a place of acceptance for both of us by then.
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They are unable to assist in any part of
their care. They will lose weight, their body will begin to curl, they are
unable to grasp or hold on to anything. They will be
unable to walk or move without help, they become wheel-chair bound and bed-ridden
and become like a newborn
infant in terms of their care needs. They need to be propped in bed
and will tip towards one side if sitting up and will need the same body
supports as a new born.
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Their bathing can still be done in the bathroom, but it is usually
less frequent and bed baths are more the norm because of the logistics of moving
them. I was able to bathe Tom in the shower, using a shower chair until 2 weeks before he
died. He became so frail at that point, that moving him any more than necessary was
impossible. I personally felt there was something therapeutic, if
not spiritual about having warm water poured over him each day and
frankly, I think the effort paid off in better circulation and skin
quality. I know he enjoyed the ritual.
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Toiletting is completely dependent upon incontinence products
The transition between their being able to
walk, and stand, and their not being able to move at all without help happens more quickly
than you expect. Working with incontinence during this
phase takes some ingenuity in order to make it work, but it can work.
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All their hygiene needs must be
met. Nails must be clipped, hair cut, beards shaved, bodies
massaged, teeth brushed. These tasks are complicated by fragile skin
conditions and loss of weight. Massage is very important to maintain
skin quality and it is therapeutic for the family member. Dried skin
forms on parts of the body and itches if not attended to. Keep hair
short if possible. Long hair tends to tangle and can be very
uncomfortable. You want to be able to get a brush or comb through it
without causing discomfort.
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The
brain has now moved through the cognitive functions and into the involuntary
functions of the body. Digestion, weight, muscular control, blood pressure, pulse rate
will be affected. Eventually the immune system will be compromised,
pneumonia becomes a constant threat, this phase of destruction will continue until the
organs shut down and the person
dies. Tom’s weight loss was attributed to the fact that his system no longer gleaned
nutrition from his food. Over a six year period he experienced a steady weight
loss weighed less than 90 lbs when he died. He ate normal size meals until
one week before his death.
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Bed sores and
other skin abrasions are a constant consideration because of the fragility
of skin and circulation problems. Pressure points can occur with surprising rapidity. Keeping
bed clothes and the draperies that surround them smooth and unwrinkled is
very important. Keeping their arms, legs, knees, heels, and
torso's supported by pillows in bed is essential. Gravity pulls legs
and arms flat. Because the body is slowly curling into the fetal
position, that pull can be uncomfortable and the rubbing of elbows, knees,
heels, wrists, spine on the sheets causes pressure points. If the
body is supported with pillows this slippage won't occur. Tom was
bed-ridden for 4 years. He didn't have one bed sore or pressure
point until days before he died and by then his system had shut down.
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It
is very important to get help. Moving them by yourself is a
prescription for injury for yourself and them. 'Help' doesn't
necessarily have to change the diapers. 'Help' can be there to move
them and hold them up while you change the diapers or bathe them. ' Help'
can simply be a body there to feed and be sure someone is there to call
for help if help is needed while you are out. ' Help' doesn't
have to be a registered nurse. However, 'Help,'
whether it is a family member, a volunteer, or a private aide, is essential for caregiver respite as well
as the direct care of the family member.
Tom began a period of imbalance in which he’d teeter back and forth and fall.
Most often he’d slide up against a wall for support. Sometimes I was able to
get to him before he fell and sometimes he continued to slide down the wall
until he was on the floor. Seating him and keeping him off his feet was of no
use in our situation because he still had the ability to stand without help and
he was the pacer from hell. His compulsion to pace outlived everything. Even
with this new development as soon as I seated him he was on his feet again.
When
I was unable to catch him and he ended up on the floor I then had the problem of
getting him back up. Since he had lost the ability to organize any part of his
movement, my getting him on a chair or on his feet was sometimes impossible
without help. On occasion I was able to get him on his knees and maneuver him to
a standing position but it was a rough time on my back. My son was within a
phone call at all times during this period and sometimes I was forced to keep
Tom as comfortable as I could on the floor until help arrived.
Before
anyone rears up and points a finger at me for being so callous as to leave
Tom on the floor for any period of time, it needs to be pointed out, that
Tom was placed in a nursing home on two occasions for a 5 day respite
stay. On both occasions he was injured while there. The first
time he fell out of bed in the middle of the night, was wedged between the
bed and the end table which was bolted to the floor for God knows how long
before he was found. He suffered a shoulder injury, was bruised along
the side of face, neck and shoulder. The second stay he suffered a
small stroke and fell. He walked into the nursing home on Friday and
was tied in his wheel chair, with his entire left side flaccid when I picked
him up on Monday. I hadn't been called by the nursing home because no
one noticed his inability to stand, walk or move after the fall as being
unusual. (There had been several staff changes over that
weekend.) The stroke was confirmed after I took him to the emergency
room on our way home. This is not to denigrate nursing homes, this is
just to point out that 'stuff' happens there also. Two weeks later he
stood up from the wheel chair and resumed pacing for another
year.
One evening, I walked
with Tom into his bedroom as usual, I sat him on the edge of the bed and helped shift
his body to a reclining position. The next morning he couldn’t sit or stand
without help and he had no balance, however, he could still hold his weight on his feet.
If I stood behind him and held him by crossing my arms under his arms and
clasping them in front of him, I could actually walk him from his bedroom to the
living room. I used my body to propel him and hold him up at the same
time. We were able to continue this for almost 4 years. Yet he was
totally unable to stand on his own. The body remembered long after his
brain forgot. This allowed me to move him around on my own more
safely than might be thought and aided in his continued hygiene care.
Having
hired a home health aid by then, I would walk Tom into the bathroom when he
needed changing, I would hold him from behind, (also holding his hands so the
jerking he was experiencing wouldn't strike out at Bernice, our aide,) and Bernice would
work from the front, removing the soiled diaper, cleaning him, replacing a
clean pad and rearranging his clothes. We got so we could do the whole operation in less than 5
minutes.
The loss of walking
isn’t always as dramatic as this was for everyone, and while many continue the
ability to hold their weight, some don't. But it is still a trauma we
face no matter how or when it happens.
Clothing:
Click here for "Dressing for
Incontinence Care.
Toiletting:
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If
they are still able to use the toilet, and some are, make sure you have a
raised toilet seat. This shortens the sitting distance and gives more
leverage
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for
normal stool
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for
soft stool
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in-bed
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pads,
implements, products
Bathing:
Environment
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