Family Planning Matters

When a disease takes over your loved one's life – will it be your responsibility?

There I was, standing in line at the deli counter waiting for my lunch meat, coffee in my right hand and shopping list in the other, when the man in front of me proceeded to tell the clerk behind the counter that his mother's health was deteriorating and he and his wife had recently decided to move her into their home.

This alone isn't that unusual to hear, especially as rising healthcare costs have more and more baby boomers taking in their ailing parents. Yet the one thing that really struck a chord with me was the fact that he kept repeating the same sentence, “If we didn't take her in, then she would have to go to a nursing home.”

The scene I witnessed really had me thinking – thinking about how pivotal family planning really is in the lives of aging parents.

As I walked down each aisle of the grocery store, I thought about what I would want when I can't take care of myself anymore. Of course this thought has crossed my mind many times before because I've had to face the challenges of aging with my own parents.

One of the many thing that I have learned over the years caring for a parent with Alzheimer's is that families need support. Just like how that little cardboard ring around my coffee stops me from burning my hand, families need to form a circle to protect one another as well. And, just like that man (and his wife) that I overheard in the deli line did for his sick mother.

My advice to all families out there is start being proactive now. Start thinking about what responsibilities you may have as a caregiver as you get older. The more information you collect, the less likely you will get burned by the challenges of aging.

Written by Tonia Roemer, Member of Navacare Team

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

The Apathy of Alzheimer's

The Apathy of Alzheimer's

Watching a parent deteriorate and forget you is life changing. Memoirs on a mind destroying disease and the apathy of Alzheimer's.

Alzheimer's has a way of changing your frame of mind when you watch a parent slowing deteriorate from this disease.

As I've watched my mother progress through the stages of Alzheimer's, I've asked myself one of the most profound questions around this disease: Does it matter if a loved one doesn't remember you anymore? I wondered if this is what is called, “the apathy of Alzheimer's”. The point where you just don't care to visit your parent or loved one anymore because they don't remember you anyway - does it really matter?

In the beginning, you notice little things like forgetting where they put the car keys, leaving a coffee mug in the microwave (who hasn't done that), or misplacing a favorite piece of jewelry.

This first stage of Alzheimer's typically affects only short-term memory so it may seem like just a “normal” part of aging. Most of our family, including my siblings, thought nothing of the fact that our mother was becoming forgetful. But, my sister and I knew something was wrong when mom became forgetful and confused in the kitchen – her main room of operation.

Honestly speaking, when these subtle changes happened to my mother, I was initially annoyed but then I started to wonder if something was seriously wrong with her. I genuinely wanted to help her combat Alzheimer's. I wanted to find ways to show her how to work her mind and help her find medications that can slow the progression of Alzheimer's. I did not have the apathy of Alzheimer's.

I remember one Thanksgiving when we spent the day at my parent's town home and noticed how disorganized my mother was in the kitchen. She even left something on the stove too long. This was highly unusual behavior for a woman who was known for how well she could prepare an Italian meal.

As the disease progressed, mom became more and more forgetful. I became more and more concerned about her ability to function. I contacted her neurologist and sat down with him to discuss options and medication that she could tolerate. The apathy of Alzheimer's had definitely not set in yet.

Like many primary caregivers, my father was feeling the strain of caring for my mother. He had been rushed to the emergency room twice in six months with chest pains. So, I made sure he was given the proper medication to keep his blood pressure down and I assisted them at home. No, the apathy of Alzheimer's was not in my family.

Then things began to get worse. Mom stop saying our names and stopped calling. She forgot who dad was and insisted she wasn't married. I, of course, knew that eventually she would forget all of us...including me but nothing prepared me for the day when it happened.

So, I ask myself, “Why does it matter if I call? She doesn't remember me. Why does it matter if I visit? She doesn't remember me. Why does it matter if I bring a meal? She doesn't remember me. Why does it matter if I spend time with mom? She doesn't remember me. After all, I am a perfect stranger to her.

Was the apathy of Alzheimer's starting to set in?

Then I remembered: It does matter because I remember her. I remember that she gave birth to me. I remember that she fed me and took me to school. I remember that she watched me graduate from high school and college. I remember that she was there when I married my husband. And, I remember that she helped me care for my children when they were little. I remember a lot of things.

My mother may not remember me but I remember her. And that is why it does matter. Because she once cared for me, I will now care for her.

I refuse to let the apathy of Alzheimer's set in and take away what I have left of my mother...my memories.

Written by Tonia Roemer, Member of Navacare Team

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

The Most Difficult Conversation I Ever Had

My reflections after having the most difficult conversation of my life - telling my dad it was time to move my mom out of their home and into a memory care assisted living.

Certainly life comes with some challenging “situations” and “sticky” talks, but the most difficult conversation I ever had happened when I had to tell my dad it was time for my mom to go into a memory care living facility.

My mother, like millions of people today, has Alzheimer's Disease. Her's has been a slow progression. So much so that I always thought I would have plenty of time to prepare for this difficult conversation.

But the truth of the matter is nothing could have prepared me for the unchartered territory of telling of telling someone you love that their lifelong partner would never again share their days with them or sleep under the same roof.

Yet, I knew just by the reality of what was happening in their lives: the constant phone calls, showing up at my sister's doorstep every evening because dad didn't know what to do with mom and the strain it had taken on my dad's own health, that it was time to get some outside help. It was time for a difficult conversation.

In the beginning, we proactively tried everything we could think of to keep our mom safe at home. Each of us kids took on a role and shared activities to help; everything from shopping for appropriate footwear to making the house safer for my mom.

But she was getting more and more confused. And as time went by she recognized us less and less. Especially in the evenings when she didn't know who dad was and insisted on going “home”. We were afraid she would just walk out the door and wander away. This was the point where we realized it wasn't safe to keep her at home anymore - even with all the safety precautions we were taking like door alarms and a monitoring system.

At some point though, all of this wasn't enough – mom needed more care (professional care) that we were not equipped to provide her.

No one teaches you, gives you a manual to tell your parent the time has come to let their spouse go into assisted living. And even if that information is out there (and it is), it will never be easy to have this difficult conversation – and it wasn't.

It pained me to think that if this conversation is going to be this hard on me, I could only imagine what my dad was going to feel.

When I did finally have that difficult conversation with dad, my siblings and I sat down with him and shared our concerns. We did our best to approach him in love and share the positives of this new situation like: time to do what he wanted to do for a change, a new sense of independence for himself, less stress and frustration for everyone and of course how much safer mom would be in a memory care facility.

Dad resisted the idea at first. We understood this but still knew what needed to be done. Was it easy? No. Did we feel guilty at times? Yes. In the end, dad just had to come to the realization on his own that he is unable to continue caring for his wife.

Once we moved mom into a memory care facility, my dad became a “new” person. He looked more relaxed and even gained a little weight. But from my perspective, the greatest benefit for all of us children is that we could once again be a son or daughter and our dad could truly be a dad (and grandpa) again.

Just because conversations can be difficult, doesn't mean that they are not necessary. Communication will always be the most important tool throughout the caregiver journey.

Written by Tonia Roemer, Member of Navacare Team

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

The Fight of Your Life: Becoming Proactive in Preventing Alzheimer's

Does your parent have Alzheimer's and you want to increase your chances of not getting this disease? Here is helpful advice for preventing Alzheimer's from someone living it.

So you say that Alzheimer's “runs in your family”, from your mother to your grandmother and now you are concerned about getting this disease too. How do you prevent Alzheimer's – if it's even preventable at all?

I want to talk to you about some important ways you can help prevent Alzheimer's. What qualifies me to share this information with you? I'll tell you what - preventing Alzheimer's has become the fight of my life ...

Eight years ago, my mother was diagnosed with Alzheimer's Disease. In the beginning, it was fairly unnoticeable: a coffee mug left in the microwave, misplaced keys or a forgotten birthday. After a few years, the short-term memory loss became more noticeable: conversations that went around in circles, the same questions asked over and over again and forgotten names of family members. In the last couple years, my mother's Alzheimer's has hit the moderate stage and now she has trouble remembering what she did an hour ago. Sometimes, she doesn't even know who my father is or who any of her children are. The short-term part of her memory is gone and now the disease affects her long-term memory.

As I watched my mother deteriorate over the years, I became determined to do everything I could to prevent Alzheimer's from taking over my life. How? I became a student of the disease and studied it, I mean really studied it. I read everything I could get my hands on related to preventing Alzheimer's and I picked the brains of family and friends who had a loved one with Alzheimer's. Preventing Alzheimer's has become the fight of my life and if you have a parent with Alzheimer's, it could become the fight of yours too – literally.

Here is what I have learned about preventing Alzheimer's. Each practice is something that I personally do daily to increase my chances of preventing Alzheimer's. It is my hope and prayer that this information will help you in the fight to prevent Alzheimer's from taking over your life:

• Exercise your body. There has never been more evidence out there than we have today that exercise benefits your mind and can aid in preventing Alzheimer's. A recent study conducted by scientists at the University of Pittsburgh found evidence that could suggest that walking can help decrease risk factors for Alzheimer's more than any other type of exercise. Part of the reason this is true is that aerobic exercise (like walking) rushes blood to the brain and contributes to overall brain health.

“The best thing you can do for your brain all throughout your life and especially as you age is physical exercise.” - Dr. Samuel Gandy, Mount Sinai School of Medicine

• Exercise your mind. Remember the old adage, “use it or lose it”, this holds true for your mind as well as your body. You need to challenge your brain so it is constantly stimulated. This is important in preventing Alzheimer's. And, it doesn't just have to be crossword puzzles or math problems. Try a new hobby, read a novel or journal your thoughts daily. Learning spurs on the growth of new brain cells. “When you challenge the brain, you increase the number of brain cells and the number of connections between those cells,” says Keith L. Black, M.D., chair of neurosurgery at Cedar-Sinai Medical Center in Los Angeles.

• Eat well. I cannot stress how important this one is or how much this has completely changed my own life and health. I made a very conscious decision several months ago to completely change my diet in order to give myself the best chance of preventing Alzheimer's that I could. Here is what the experts say about it:

A heart-friendly Mediterranean diet that consists of mostly fish, vegetables, fruit, nuts and beans – reduced the risk of Alzheimer's by 34 to 48% in studies conducted by Columbia University.

“We know that omega-3 fatty acids in fish are very important for maintaining heart health,” says Keith Black of Cedars-Sinai. “We suspect these fats may be equally important for maintaining a healthy brain.”

Now those are statistics worth changing your diet over!

• Socialize. Another important way to help prevent Alzheimer's is to socialize. We already know that socializing can improve your mood but can it also help prevent Alzheimer's? A 15-year study of older people from Sweden's Karolinska Institute showed that having multiple social networks actually helps lower dementia risk. “A rich social life may protect against dementia by providing emotional and mental stimulation,” says Laura Fratiglioni, M.D., Director of the Institute's Aging Research Center.

With what I have learned throughout the last 8 years, I am convinced that proactively preventing Alzheimer's is the key to fighting Alzheimer's. I know it has become the fight of my life - a fight worth winning.

Written by Tonia Roemer, Member of Navacare Team

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

Communication and Alzheimer's: What Not To Say

Knowing what to say and what not to say can be challenging when talking to a loved one with Alzheimer's. Here is help for constructive communication.

You may have grown up in a home where you had a close relationship with one or both of your parents. Maybe you even remember some of the talks you had with your parents. Now that your parent is diagnosed with Alzheimer's and the disease is progressing you don't know what to say and more importantly, what not to say.

Here are some suggestions to help you navigate through the “what not to say” parts of your conversations:

• Don't make promises you can't keep. Here is a good example of what not to say – don't make a promise you can't keep. If you tell your loved one you will take them to the market, then do it. Don't offer to take them somewhere and then not do it. You may say it doesn't matter if they forget anyway, but character always matters and your loved one with Alzheimer's will be disappointed if they remember and you don't follow through.

• Don't ask too many questions. If you begin by asking too many questions at once, you will confuse and frustrated your loved one. Start by asking one question at a time. Also, another “what not to say” is why. You can ask who, when, where and what but do NOT ask a person with Alzheimer's why. The why is too complicated and will end up frustrating them...definitely something to add to the “what not to say” list.

• Don't say remember. At the top of the “what not to say” list is remember. It may be an easy slip up to say, “Remember when Uncle Steve went to Florida?” but your loved one really can't remember so asking them to remember will only bring frustration and more confusion. YOU need to remember that your loved one has Alzheimer's and can't remember. Here is a story of someone who wished she knew about this “what not to say” tip:

"As I talked to my mom about the events of the past week, she mentioned going to see her father. I turned to her and said, “Remember that your father is no longer alive.” My mom lost it and I do mean LOST IT! She threw a tantrum like none I had ever seen before. It took me a good hour to bring her down from the ceiling. I will never say, “remember” to her again!" - Anonymous

• Don't argue with them. Here is a classic, “what not to say”. It seems so commonsensical to avoid arguing with a person who has Alzheimer's but many people do argue to the point of exasperation. When, in reality, arguing gets you nowhere. Instead, try to validate their thoughts and feelings by saying something like, “I see that you are sad. You must really miss your mother. Tell me a little bit about her.” This not only validates their feelings but it also opens up the lines of communication.

By following some of these simple suggestions of “what not to say”, you can bridge the communication gap between you and your loved one while creating a calm environment. It is always important to put yourself in the shoes of your loved one and see the world through their eyes. This will help you learn what not to say.

Written by Team at Navacare

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

4 Tips to Help You Control Your Emotions

As your loved one walks through the stages of Alzheimer's, you may have some emotional struggles. Here are tips to help you understand and control your emotions.

There I was sitting at the kitchen table listening to my daughter ask my mother (who has Alzheimer's) questions about her family. Mom said that my sister was her sister and that she had two brother (actually, those are my siblings too)! My mother had no idea who I was. I felt a surge of emotional diarrhea surface from the pit of my stomach but I knew I had to control my emotions...but how do you control your emotions?

This is just one true story told by one of 15 million Alzheimer's care providers out there who care for a parent with this disease. And with the challenges of Alzheimer's comes the inevitable question, “How do you control your emotions?”.

Good Question. If you currently take care of a loved one with Alzheimer's, you know how hard it is to control your emotions. Just when you think you have a handle on how to deal with one type of situation, a completely different case-scenario arises.

First, let's talk about some basic tips for controlling your emotions; then, we will get into a couple specific case-scenarios that may come up and how to control your emotions in some common situations.

Here are 4 tips to help you control your emotions:

1. Balance. What does “balance” mean? It means that you will need to balance yourself before you can control your emotions. One way to find balance is to try a calming exercise. Many people have found excellent results through meditation or yoga. Another option is creating a “quiet time” where you can decompress. It is amazing what time spent in meditation can do for your emotional state of mind.

2. Face your emotions. When caring for a loved one, you will feel everything from frustration to anger. How easy it is to just sweep those emotions under the rug until one day you explode! A better approach is to face your emotions head on and learn how to manage and control your emotions.

For example, if it helps you to go home or shut yourself in a room and cry after dealing with a difficult situation, then do it! If you need to unload, then call up a friend or relative and talk it out. Be sure to find someone who will listen to you and not judge you.

Another great way to face and control your emotions is to write them down on paper. Consider keeping a private journal to vent all your frustrations in. This might be helpful as a practice at the end of the day and it will help you control your emotions better.

3. Get help. If you find it difficult to control your emotions on a daily basis, it may be time to get some help. What that means to you may be quite different than someone else. Look at all your options that may include in-home assistance, Day care options, or simply having a friend or relative sit with your parent while you go out for an hour or two.

4. Get moving. Studies have shown that people who work out on a regular basis are not only more content but also have better control of their emotions. If you want to control your emotions, get moving! Go for a bike ride, a walk or join a health club. You may even want to consider enlisting a “workout buddy” to keep you motivated.

Controlling Your Emotions When Your Parent Forgets You

A common situation that arises for an Alzheimer's caregiver is when your parent forgets you for the first time. Of course, a common reaction is hurt and anger. But remember, this is a disease and it is not your parent's fault they can't remember you. It will do no one any good if you can't control your emotions in this situation. In fact, it may cause your loved one to become more agitated. A better solution is to take some deep breaths and remind yourself this is the disease taking over your parent's mind.

Controlling Your Emotions When Your Parent Forgets You But Remembers a Sibling

How easy it is to take this personally! Yet, there may be many factors in play that you cannot understand. Maybe your parent sees your sibling more than you. If this is not the case, you still need to keep reminding yourself that Alzheimer's is deteriorating your parent's mind. You will need to cultivate self-control and learn that your parent's inability to remember you is not a form of rejection. Also, understanding the disease and how it progresses may help you control your emotions.

Written by: Brett Bayda

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.

Overcoming Guilt When Your Parent's Caregiver Isn't You

When a parent has Alzheimer's and you cannot care for them, overcoming guilt is a struggle. Here are some tips to help you avoid the pitfalls of guilt.

So many babyboomers today are faced with aging parents that are diagnosed with diseases that will eventually leave them unable to care for themselves. Then the perpetual question arises: Who will care for mom or dad? Some adult children just don't have the option of caring for their parent for a variety of reasons. And when that is the case, guilt can set in. How do I know? Because eight years ago my mother was diagnosed with Alzheimer's and I was faced with the same struggle of overcoming guilt.

I want to be clear on something - I'm not here to tell you what is the right or wrong way to go with caring for your parent. Rather, I'm here to say that I understand overcoming guilt because I also struggled with it. You see, I wasn't my parent's primary caregiver and it bothered me. In fact, the guilt was so overwhelming at times that I needed strategies to help me overcome guilt. Here are a few ideas that worked for me:

1. Call a friend. As strange as this may sound, the best remedy for overcoming guilt may just be a phone call away. Sometimes just having someone available that will listen to your struggles with guilt will help you feel like you are doing all you can do for your parent.

I remember a time when my mother had one of her, what I call, “Alzheimer tantrums” and I received a call from my sister (she lives 5 minutes from my mom...another overcoming guilt challenge) that my mom was out of control. I talked to my mom on the phone but honestly, it didn't calm her down much. Eventually, she did calm down but I felt such overwhelming guilt over the fact that I wasn't there to help my sister. I then called a friend and we talked it through. She helped me see that I did everything I could possibly do given the distance I lived from my mother. That conversation really helped me overcome guilt and guilty feelings.

2. Let yourself off the hook. As an adult child with a parent having Alzheimer's, it's so easy to be hard on yourself. Maybe I should have done more? Why didn't I find a better medicine for dad to take? I should have reacted differently in that situation. We can beat ourselves up over the would have's and should have's. You need to give yourself permission to say, “its a disease and it's NOT my fault.” When I learned to let myself off the hook more, overcoming guilt became doable.

Now, I'm not saying that it will be easy to overcome guilt – because it's not! Of course, there will be times when you will feel guilty about not being available when your parent goes through an “Alzheimer's tantrum” or when there is some issue that arises and another sibling or caregiver handles it. However, the more you practice letting yourself off the hook, the better you will get at being kind to yourself and overcoming guilt will get easier.

3. Accept the guilt. Yes, you read that right. You are human and you will feel guilty at times. Accepting the feelings of guilt will help you in overcoming guilt. Guilt is a natural emotion that can serve as a way of spurring us to do something that we ought to like make an apology when we should. That's why not all guilt should be ignored. So lean into it and allow yourself to accept that guilt just comes with the territory of having a parent with Alzheimer's. This was an important step that helped me in overcoming guilt.

Also, understand that there are other people out there that are going through the same emotions that you are going through...you are not alone. Don't be ashamed to admit that you feel guilty. Accepting guilt can help you in overcoming guilt.

Sometimes when I felt guilty, I would log on to an online blog and read other people's stories about how they learned to overcome guilt. You know, not only was it therapeutic, but it also helped me feel like I wasn't alone. More importantly, it helped me live with the guilt.

Written by: Tonia Roemer, Member of Navacare Team

Navacare helps adult children learn how to protect and prolong their elderly parents' independence by offering FREE resources and information at www.navacarenow.com.