| Common
questions
•
The Disease
•
Drugs and Research
•
The Human Side
•
Caregiver
•
Understanding the System
•
Taking a Break
•
Relating and Communicating
•
Daily Life
•
Paperwork and Planning
•
Special Times
•
When Living at Home is Not Possible
•
Preparing for the Final Days
The Disease
My
husband is 72 years old. What should I do if his doctor thinks his symptoms
are a normal part of aging?
If
you are unhappy with the approach of your husbands doctor to the
problem, you may want to talk to him about it. If you are still not
satisfied, you can ask for a second opinion.
I
have noticed that my sister is showing at least 5 of the 10 warning signs.
How do I get her to the doctor when she says there is nothing wrong?
You
may wish to see if she has a regular check-up with her doctor any time
soon. If she does, offer to take her. That way you can share your concern
with her doctor. If that is not possible, you may want to call her doctor
and see if you can find a way to get your sister assessed.
I
am nervous that the doctor will tell my father he has Alzheimer's disease.
I think he would be better off not knowing.
It
is important to examine your reasons for not wanting your father to
know his diagnosis. Most people want to know their diagnosis. It helps
to explain the problems they have been having and allows them to actively
participate in planning for their future
Drugs and Research 
How
do I make sure my father takes his medication properly? With his memory
problems, he often forgets it altogether or takes it twice.
You
may find it helpful to purchase a seven-day medicine container from
the pharmacy. You can fill it with the appropriate medication once a
week so the person can keep track by looking at what has been taken.
Sometimes, the medicine can be purchased pre-packaged in the proper
amount. These are called dosettes. Alternatively, you may find it easier
to have someone call or stop by to remind the person when it is time
for medication.
My
brother says we should be taking Vitamin E to help prevent Alzheimer's disease.
What do you think?
Although
there has been much talk about the benefits of Vitamin E in the prevention
of Alzheimer's disease, there has been little scientific evidence to support
it. At this point in time, it is not considered a measure to prevent
Alzheimer
We
have just learned about a research project that our doctor has asked my
wife to participate in. I am a little nervous about some of the side effects
of the drug. Will the doctor be mad at us if we say no?
Definitely
not - participating in research studies is completely the decision of
the person with dementia and her family.
Doctors
understand that not everyone is interested or comfortable participating
in research projects.
The Human Side 
My
sister who lives in another city wont believe me that moms
symptoms are getting worse. What should I do?
Understanding
the changes caused by dementia is difficult when you do not see the
person struggling day to day. From your sisters perspective, she
may be right. Many people with dementia shine when they are talking
to a loved one on the phone. It may be helpful to talk to her about
a typical day in your moms life and where she is having trouble.
Explain to your sister that the telephone is not a good way to get a
realistic picture of your moms condition. If it is possible, suggest
that your sister visit and see for herself the changes that are occurring.
My
best friend has stopped visiting since my husband was diagnosed. I miss
her. What can I do?
Unfortunately
this is not an uncommon reaction. Many people simply do not know what
to do, so they do nothing. Others do not understand the disease process
or its affects on the person and his family. Call up your friend and
tell her how you feel. Try to arrange a time to visit or to go out for
coffee so that you can catch up and work out a way to stay in touch.
I
am a little nervous about going to a support group, is it really worth
it?
Most
people say yes. It is an opportunity to talk to people who
are in similar situations and you may learn a tip or two that will help
in your day-to-day life. The Alzheimer Society of Ottawa
and Renfrew County
offers specialized support groups for wives, daughters, sons and husbands
as well as general family support groups. However, groups are not for
everyone. If you do not find support groups helpful to you, you might
find other ways to get support and information that are comfortable
for you such as one-on-one counseling offered by the Alzheimer Society
of Ottawa and Renfrew County.
Caregiver 
Everyone
is offering to help me, but I really want to care for my dad on my own.
How can I put them off politely?
It
is not unusual for caregivers to avoid accepting help. Although you
may want to provide your dad with all of the needed care, why dont
you allow those around to help out with other things such as preparing
a meal, doing some shopping or just coming over to visit? Having help
will lessen your load so you have more energy to care for your dad and
yourself as well. People like to do things for others. It not only helps
you, but also makes them feel useful. In the long run, it is probably
not in your dads best interest to create a dependency on just
one person.
I
know I am stressed out. I lost my patience with my wife yesterday and
yelled at her. Where do I start to get help?
You
have taken an important first step by recognizing that you are under
stress. The next step might be to talk to someone about how you are
feeling. This can be a good friend, someone from your church or a telephone
counselor at the Alzheimer Society of Ottawa
and Renfrew County.
Then you may want to look at ways you can get a break. Is there a friend
or family member who could stay with your wife while you get away
- whether it is a long walk, time to read a book or participate in an
activity you really enjoy? If no one comes to mind, then it might be
time to consider a day or in-home respite program. (These programs provide
support, supervision and activities for the person with the disease
while the caregiver has time for himself.)
My
mother is looking after my father and I can see that she is showing several
signs of stress. She wont accept help, but I am worried she will
become ill as well. What can I do?
Caregivers
often have problems accepting help. You may need to talk to her about
the importance of looking after herself. If she gets sick then she will
be unable to care for your father. The next step may be to do a few
little things that lessen her load. Cook a meal, or take your dad for
a drive or a walk. If you start small, she may see that your father
is okay and that the help makes her feel better. This might help her
accept taking more time for herself and letting others help with tasks.
Understanding
the System

I
am nervous about having a stranger look after my husband but I know I
need a break. Can you help?
It
is very natural to be concerned about someone you dont know taking
care of your husband. There are some things you can do to make it easier
on everyone. On the workers first visit to the house, you may
wish to stay close by to give both your husband and the worker a chance
to get to know each other. Once they are comfortable, you can venture
out. Completing the Alzheimer Society of Ottawa
and Renfrew Countys
Personal Care Book provides you with an opportunity to write down everything
about your husband in one spot. This will give the worker the information
about your husband that will help her to provide good care.
The
home support worker who comes into the house is really a nice person but
she doesnt always do things the way I want. What should I do?
Your
first step should be to talk to her about what you need her to do. If
that is not successful, you may have to talk to her supervisor. However,
most people find that a gentle direct approach usually works.
There
are so many different agencies that can provide help. Where do I start?
Start
by determining what you need. Is it in-home respite or a day program?
Do you need help with housework or someone to talk to? Once you have
figured out what you need, match your need with a service.
A counselor at the Alzheimer Society of Ottawa
and Renfrew County,
CCAC Case Manager or Psychogeriatric Community Services Dementia counselor
can often help you sort this out.
Taking
a Break 
How
do I arrange to get more help looking after my wife? I have trouble getting
her into the bath.
There
is help available for personal care such as bathing, grooming etc. The
first contact you should make is with the Community Care Access Centre.
They have Case Managers who will come to your home and assess the type
and amount of assistance that you need. You are eligible for up to 12
hours of assistance/week. There are also Home Support Service agencies
that you can contact and they provide help for a fee.
I
feel so guilty for thinking about taking a holiday. We have been married
for 50 years and have always looked after one another.
Many
spouses experience a general sense of guilt because they want to take
a break from caregiving but feel they have somehow failed to match up
to their own expectations or the expectations they imagine others have
of them by thinking about themselves and the rest that they need. It
is important that you set realistic limits to what you can do and it
is important that you look after yourself so that you have the energy
to give to caregiving. Taking a break, using the respite options available
to you will not only help you but will also, in the end, help your spouse
because you will return more refreshed and able to carry on.
My
husband likes things done a certain way. Will the professional caregivers
know how to handle him?
Over
the years, you have learned how your husband responds to caregiving
and what works. You can help professional caregivers by filling A Personal
Care Book available from the Alzheimer Society of Canada. This book
allows you to write down all those helpful techniques and tips you have
learned over the years. It is also important that you realize others
may also be able to provide you with fresh insights and ways of helping
your husband that you may find helpful to try.
Relating and Communicating 
My
sister has dementia. Some days, when I speak to her she understands. On
other days it is almost like there is a wall between us, and nothing seems
to be understood.
This
is not uncommon with dementia. There are some days that are good and
other days where the persons abilities are limited. On the days
when you are having problems you will need a lot of patience. Try to
understand both your sisters verbal and non-verbal communication.
Sometimes a persons non-verbal communication can tell you more
than the words. Try the techniques outlined in the Alzheimer Society
of Canadas Dayto-Day sheet on Communication. Unfortunately,
there will be times when you and your sister will not understand each
others words. At that point it will be extremely important to
show your sister that you care and that you are trying to understand
her, as she will most likely be frustrated too.
My
husband and I have been married for a long time. Lately he seems to want
to have sex more often. It is not that I dont love him anymore but
since his dementia has gotten worse it is not the same. What should I
do?
You
should only do what you feel comfortable doing. You may have to try
to find other activities that divert your husbands energy and
attention. It also may be helpful to talk to someone about it with whom
you are comfortable. However, it is important that you continue to show
your husband he is loved and cared for in ways that are acceptable to
you.
I
come from a fairly large family (four brothers and two sisters). We all
live near our parents. Since my mother was diagnosed with dementia it
seems that everyone is trying to help but in trying to help, my dad seems
overwhelmed. Do you have any advice?
Your
dad may be wearing out just keeping track of all the help. One suggestion
would be to hold a family meeting. Make sure to include your mom and
dad. Ask your dad to think of things with which he needs help, and then
work out a schedule of tasks and visits. This way, your dad will know
what to expect and you and your brothers and sisters will be able to
divide up the chores and visits so that nothing is duplicated and everyone
knows what each other is doing.
Daily Life 
My
father refuses to allow me to bath him. He insists that he does not need
a bath. As his only daughter, I feel badly that he wont let me do
it.
It
is not uncommon for a father to be uncomfortable or embarrassed having
a daughter bathe him. Is there a possibility of having a male family
member help with this task? If this does not work, it may be necessary
to get a professional through the CCAC to help.
My
wife has day and night mixed up. She sleeps all day and keeps me up at
night roaming around the house. Do you have any suggestions?
Dementia
often causes people to mix up day and night. Try to keep your wife active
during the day by finding activities that engage her instead of letting
her nap. Physical activity (based on her ability) is also helpful in
making sure she is tired by bedtime. If this approach does not work,
speak to your wifes doctor about the problem.
My
husband is the only driver in the family and is quite adamant that he
is still able to drive. I think his driving is unsafe. What should I do?
Losing
the ability to drive can be devastating as it is the cornerstone of
independence for most people. As a result, it is not unusual for individuals
with failing abilities to deny that there is a problem. It may be helpful
to talk to the individuals doctor about this concern and work
out a plan to get the person to stop driving.
Paperwork
and Planning 
Do
you have to name the same person as your power of attorney for property
and personal care?
No,
you can name separate people.
I
have power of attorney for personal care for my parents and they have
not made out advance directives yet. I would really like to have some
sense of their wishes. How can I get them started?
The
first step is to talk to them about the importance of knowing their
wishes while they are able to tell you. The next step is to find a form
that your parents will be comfortable completing. Then, work with them
to complete it.
Why
should I worry about planning for caregiver absence? I dont plan
on going anywhere.
This
type of planning is not for planned absences. You may have to leave
the person you are caring because of personal injury like a broken hip
or a death might take you out of town. Being prepared and having a plan
will make it easier on everyone.
Should
everyone have an autopsy done?
No.
Autopsies are a personal decision. Some individuals and their families
want to know what form of dementia the person had. For many, this information
helps to answer some questions about genetics and it also provides closure.
Special Times 
I
would like to go away on a holiday. My wife is in the middle stage of
the disease. I find that she is more confused and does not like new places.
Should we go?
It
sounds as if the trip might overwhelm your wife. You may want to talk
to friends and family about their thoughts on the trip and whether you
might be setting yourself up for more work and worry than vacation.
Unfortunately, there comes a time with the disease when familiar places
and routine are necessary to maintain the persons level of comfort.
Usually, at this point, travel to new places will not be enjoyable for
either of you.
I
find the holidays are overwhelming for my mother who has Alzheimer's disease.
Do you have any tips to make it easier for both of us?
Keep
to your mothers routine as much as possible. Try to keep celebrations
simple with few people. Plan events at a time of day when your mother
is at her best. If necessary, ask someone to stay with her while you
go out and celebrate or when you are entertaining at home.
My
wife has been in the hospital and has become fairly confused. The doctors
say it is because she is in new surroundings. What should I do?
Provide
the staff with as much information as possible on your wife. If you
have a completed copy of the Alzheimer Society of Canadas Personal
Care Book, share it with them. If you havent completed one, now
is a good time. Visit regularly and ask other family members or friends
to drop by. Take some of your wifes belongings that are familiar
to her, such as an afghan, pictures or her favourite magazine.
When Living at Home is Not Possible 
What
information do they consider when determining if someone is eligible for
a subsidy?
The
statement of income is the only piece of information considered when
determining if a person is eligible for a subsidy.
Should
I take my young children to visit my father in the nursing home?
Yes.
However, you should first prepare them for the visit by explaining what
the facility will be like and what they might see. Children are an integral
part of their grandparents lives and a move to a long-term care
facility should not take them away.
I
feel that my mother is being restrained inappropriately. What should I
do?
Talk
to your primary contact at the facility and find out why your mother
is being restrained. Discuss what, if any, alternatives were tried prior
to these restraints being used. If you are not satisfied with the answer,
speak with a nursing or care supervisor and/or your mothers doctor.
Preparing for the Final Days

My
father is in the end stages of Alzheimer's disease and is unable to do
anything for himself. What can we do to make him more comfortable?
Some
of the ways that you can provide comfort to your father are: providing
fluids or keeping his lips moist, rubbing his back, providing a change
of position such as having him lifted into the chair, playing music
that is appropriate for him, holding his hand, letting him know that
you are there. Remember, he is still able to hear even if he can't speak.
My
mother passed away a couple of months ago and my father is having problems
adjusting. Should I be worried?
It
depends on the type of problems your father is having. It often takes
a year or more for partners to adjust following a loss. Do his problems
prevent him from functioning day-to-day? If they do, he should see his
doctor. You might want to suggest he join a widowers support group
or talk to someone he is comfortable with about his feelings.
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