Questions

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 husband’s 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’s disease.

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 won’t believe me that mom’s 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 sister’s 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 mom’s 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 mom’s 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.

 

Information for Caregivers

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 don’t 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 dad’s 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 won’t 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.

 

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 out “All about me” .  It is a resource intended for people with dementia to provide health-care providers with information about themselves. The booklet can be filled by the person with dementia or with help from their caregiver to provide a snapshot of the person – information about them as an individual, such as needs, preferences, likes, dislikes and interests.  This resource will enhance the quality of care and support provided by community workers as they get to know the person or while she adjusts to a new home.

 

 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 person’s 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 mother’s 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. You can do this by filling out a copy of “All About Me“, a resource intended for people with dementia to provide to health-care providers with information about themselves. Visit regularly and ask other family members or friends to drop by. Take some of your wife’s belongings that are familiar to her, such as an afghan, pictures or her favourite magazine.

 

 Understanding the Healthcare 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 don’t know taking care of your husband. There are some things you can do to make it easier on everyone. On the worker’s 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 County’s 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 doesn’t 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.

 

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 person’s abilities are limited. On the days when you are having problems you will need a lot of patience. Try to understand both your sister’s verbal and non-verbal communication. Sometimes a person’s non-verbal communication can tell you more than the words. Try the techniques outlined in the Alzheimer Society of Canada’s Day–to-Day sheet on Communication. Unfortunately, there will be times when you and your sister will not understand each other’s 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 don’t 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 husband’s 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 won’t 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 Community Care Access Centre 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 wife’s 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 individual’s 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 don’t 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

 

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 mother’s 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.