"I
love my mother, but she has always declined my offers to come live with us in Houston. She
has just been diagnosed with Alzheimer’s Disease, and I have been told that she does
not need to go to a nursing home (which would kill her), but that she must have 24 hour
care at home. I said fine, but if my mother doesn’t think she needs any help,
she’s not going to take my word for it. I would really like to know how we’re
going to pull this off. Money isn’t the issue. She just flatly refuses to consider
the possibility of having help. This from a 92 year old woman who can’t make it to
the bathroom in time. I live in Texas. Even if I succeed in setting up 24 hour care, how
will I know that it’s working without someone professional coming in on a regular
basis who can report back to me."
EldercareNY uses a
unique approach to helping clients and families coping with Alzheimer's Disease and
related dementias to remain safe and independent for as long as possible.
Assessing the Situation
Bringing in Home Care Assistance
Additional Living Options
When is a Nursing Home the Option
of Choice?
Assessing
the Situation
Families often need
assistance in assessing how their relative’s problem with recent memory loss is
interfering with how he/she functions on a daily basis. With all our clients we visit the
person in their home to see them in an environment they are familiar with. If the family
is not even sure if a home care aide is needed, we will help to make that determination.
It is not unusual
for family members to disagree about this issue, and even more common for the person with
memory loss to insist that they do not need any help. It comes down to whether or not
there are activities in the course of a day that this person cannot complete without the
physical presence of another person. That other person may only be needed to provide
verbal cues, prompting, or direction. But if we suspect that the absence of a person to
provide the verbal cue results in that task not getting done, then that tells us that a
person or home care aide is needed.
Initially there may
be some difficulty with cooking or meal preparation, shopping, cleaning, and laundry. Or
balancing the checkbook and medication management become problematic. For example, someone
who has always handled their finances flawlessly is now bouncing checks and/or displaying
uncharacteristic erratic spending behavior. Or
they are not able to make any sense of what medications they are supposed to take and when
they are supposed to take them. Teaching them to use a pillbox proves to be too difficult
and only makes them uncharacteristically angry. We want to eliminate factors that
contribute to angering or agitating the person with dementia.
We might see someone lose weight simply
because they can no longer negotiate the steps involved in cooking or shopping or both.
Then we find that they can still do these things if there is an aide there to put them
back on track when they get stuck.
Next Section...
Bringing in Home Care Assistance
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Bringing
in Home Care Assistance
When the family
agrees that a home care aide is needed, the next problem often is how to introduce a home
care aide to the person who is adamant that they don’t need any help. In the case of
someone with memory loss, I have a method that I have had a great deal of success with. I
do my initial visit to the home of the person in need with the family present. Prior to my
visit the family and I have discussed how to handle my introduction; often it is best not
to say that I am a social worker, but rather that I am someone the family wanted them to
meet, and we improvise from there.
Then I interview
the aide or aides on my own that I will have found through one of my sources. Finally, I
coordinate with the family and the aide about the next visit to the home, which will
include the family, myself, and this aide. I have briefed the aide about what to expect
and what we expect of her in this first visit. That is, we will arrive together, and all
sit down together, just to talk. We may talk for quite a while, and we will make sure that
the aide is involved in the conversation, and that she directs her conversation to the
person we hope she will end up taking care of. If all goes well, we might say that we have
to get back to work, but she volunteers to stay a little while to chat some more.
It is hard to be
convincing about this in writing, but my experience has shown me that this approach is
often the only one that will work. There are some people that will never come out and say
that they will allow someone to come in and help them, but we find that they are able to
bond with the aide and quickly become quite dependent on them. The denial of the need for
help actually serves a good purpose; it reduces the level of depression that often
accompanies the realization that they can’t manage simple tasks without help. What is
so fascinating is that they will allow themselves to be helped if it is done in a
roundabout way and not identified outright as help.
We maintain contact
with the aide to help her figure out ways to respond to difficult situations. For example,
if the person insists that she leave, we may suggest to her that she do that and come back
again some time later. Amazingly, the person will let her back in, as if nothing happened.
If we find that the person is just too agitated to cooperate with even a very high-quality
aide, then medication may help, and I can refer clients to physicians if needed.
Next
Section... Additional Living Options
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Additional
Living Options
I always stress
that we are dealing with individuals, and that there are no set answers to these types of
questions. Assisted living facilities are usually the preferred option if something must
be done. Caution must be used, though, in making this decision. If someone with memory
loss has already reached the point where they cannot complete certain tasks without
assistance, then they are going to need that assistance in the facility. The problem is
that when a facility states that they have a floor specifically for people with memory
loss, you can likely expect that the people on that unit are severely impaired, and your
relative would likely not be in that category yet. Therefore it would not be the right
place for her/him.
The point is:
Creativity is needed to make things work, whether it be at home or in a facility. It may
be that you would hire an aide in the facility for part of the day to help your relative
adjust to the new surroundings.
There are other
factors to take into account. If your relative was always a loner, then it would be
unrealistic to think that this would change in a facility. On the other hand, if the
dementia has caused someone who used to be very outgoing and had many friends to become
withdrawn and depressed, then a facility might help. Unfortunately, at this point in time
assisted living is not covered by Medicare or Medicaid, and is quite expensive, although
less expensive than nursing homes.
Another lesser
known option is that of the Family Group Home. These are run by families who
generally live in the home also and take care of about five people. To my knowledge the
best ones are outside the city, perhaps a two hour drive, and therefore not appealing to
most families. However, the care is good and the cost is significantly less than assisted
living.
Next Section... When Is
a Nursing Home the Option of Choice?
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When
Is a Nursing Home the Option of Choice?
We all would like
to think that we and our loved ones will never end up in a nursing home, and for many
people this will be true. In New York City many people are able to remain at home because
it is possible to receive 24 hour care at home coverage from Medicaid without having to
worry about the three-year financial look-back that nursing home Medicaid applications are
subject to (see "Paying for Care"). Also, more and more people are purchasing long-term care insurance
policies which cover the costs of care, enabling them to stay at home.
Sometimes cost is
not the issue. When the person in need of care lives with a family member, sometimes the
caregiver (usually an elderly spouse or sibling, and sometimes even an elderly adult
child, all of whom may have medical and/or psychological problems of their own) is at risk
for requiring care herself/himself, unless they have some respite. Home care aides may
help, but sometimes the living space is too small, or the person with dementia may act
worse toward the family member than she/he does to strangers. These are instances when
placement in a nursing home may be warranted. These days nursing homes will only admit
people who need help with all activities of daily living; or those who have conditions
that require skilled nursing care (Registered Nurse or Licensed Practical Nurse) on a
daily basis.
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