Introduction

As an adult child of a parent with dementia, you’ve undoubtedly faced challenges with your parent – perhaps the care, the conversations or the realization that the relationship with your mom or dad has changed. Your rapport with your parent is not the same as it was. Your relationship is evolving and will continue to evolve as your parent travels down path of dementia.

The purpose of this guide, which was written by someone who was in your shoes, is to help you navigate this journey, so you live your life with no regrets; so you maintain a warm relationship with your parent, however different; and so you can help others who face similar challenges.

Definition

Dementia is a blanket term used to describe various disorders of the brain, all of which result in impairment of intellect, memory and personality. This is usually accompanied by changes in behavior and the gradual loss of the skills required to cope with the activities of daily living.

Ambiguous Loss (2)

“Ambiguous loss” is a term used to describe the loss that an adult child may feel when the parent is physically present but may not be mentally or emotionally connected.

This is very different from the loss and grief of sudden death, as an example, where you clearly know that the person is gone. With a death, you are more likely to get support from family and friends and may eventually find closure through traditional mourning rituals and the natural grieving process. Ambiguous loss complicates grief. It may be hard for you to recognize this grief or know how to grieve when the abilities of the person with dementia have changed. Family and friends may not recognize your need to grieve the many losses you experience at different stages of the disease and therefore not provide you with the support you need in your ongoing caregiver role. Grief can be frozen, and it can put your life on hold. If you don’t allow yourself to grieve or resume some of your regular activities, coping will be harder as the disease progresses. Recognizing these feelings and understanding the concept of ambiguous loss can help to ease the effects. With guidance and support, you can work through these feelings, begin to grieve the losses and stay connected to the person with dementia while also building your own strength and resilience.

As the disease progresses, the loss may be felt again and again. Perhaps during the last visit, you were able to carry on a conversation and during the next visit, your mom or dad couldn’t string together more than a few words. You realize that as dementia worsens, you lose more of your parent.

“Since I lived across the country, I only visited my mom once a month over the course of three years. During the last year, the changes in her each month were astounding. Every visit I found a new person – she could carry on a conversation, then she could only speak in a few words and finally she could find only one word. While this was very sad, I knew the loss was inevitable, and I tried to connect with each new person whom I encountered every month. When there was no communication, I brought her favorite book and read it out loud. She continually smiled when she looked at me reading.  Although our communication was only eye contact, she seemed to appreciate my presence.”

Emotions and Guilt

Deciding that your parent should move into a skilled nursing or memory care facility was probably not an easy decision. Your parent may have fought with you about moving, and you may have felt guilty that your mom or dad now needs the skilled nursing care, which comes with less independence for your parent. Your guilt may increase if your parent has a difficult time adjusting to their new surroundings. These feelings are very natural and nearly every child has them.

The New Home

Any change is dramatic for someone with dementia. Moving into new surroundings can be particularly traumatic. To ease the transition, a social worker suggests furnishing the new unit with familiar curios, photos and other furnishings with which your parent is accustomed. The familiar surroundings will help your parent adjust to the new environment more quickly. 

The shadow box outside the unit door is a wonderful way to let the staff know a little about your parent. Highlights of their life, photos and other memorabilia also help your parent easily recognize their unit.

“My mom was admitted to the Lodge because she was coming out of the hospital. She seemed very depressed and was spending the day in bed. Lynn, the social worker, said that I should bring familiar pieces to the unit. But because I didn’t know where she was going to live until the results of the evaluation, I hesitated. Once the evaluation was completed with the recommendation that my mom stay in the Lodge, I began moving things into the unit. My mom protested, saying that she didn’t want anything. When she was at lunch one day, I moved my mom’s favorite pieces in. When she came back from eating she was happy to see everything. Then I arranged with the staff to come in throughout that afternoon and comment on the furniture, pictures, etc., which they did. The change in my mom was transformational. Now her unit looked similar to her apartment and she was thrilled. She stopped spending her days in bed.”   

Your Role in Your Parent’s Well-Being

Visiting your parent can be very hard. The role you played as a child is transitioning to a role where your parent is becoming the child. This can be very difficult to witness. Some adult children can’t cope with this transition and choose not to visit their mom or dad. However, recognizing that this evolution is the journey of dementia, coming to terms with the changes and offering your parent companionship and support will be rewarding at the end. 

Here are some tips for your visits even though the conversation might only be one way:

• Keep your mom or dad up to date on family news.
• Bring scrapbooks and reminisce about good times and significant events.
• Sit outside in the courtyard.
• Bring newspapers and magazines to look at together.
• Play games that your mom or dad may have enjoyed in the past.
• Bring others to visit.
• Give your parent a hand or foot massage.
• Paint their nails.
• Style their hair.
• Bring a DVD player and watch the videos.

“Years ago, my mom and I had taken a 10-day RV trip to 11 national parks. We had a marvelous time and laughed ourselves silly. I often brought the photos of the trip and talked about all the things we did. Although my mom could no longer speak, she was always smiling when I showed her the photos.”

Difficult Visits

Some visits can be very difficult, especially when you see drastic changes in your parent.

Don’t get despondent when visiting. Take pleasure in the small things – a smile, a laugh, a joke, a cuddle, a glimpse of recognition. Don’t stop visiting because you think there is no point because your mom or dad doesn’t appear to recognize you. Each day is different, and it is difficult to tell what the person is feeling but care staff say people always appreciate seeing visitors. Live for the moment – it does not matter that the person won’t remember your visit – you will have hopefully brought pleasure and happiness whilst you were there.”

Telephone and Video Contact

If your parent is able to talk, telephone visits can enhance your connection. Video visits add a further dimension.

“I put an old laptop in my mom’s unit, which was connected to the internet. Then I used gotomypc to log into her computer and called myself on Skype and muted the audio. Then I called her on her hearing-impaired phone. I wanted to make sure that she saw me once or twice a day, so she wouldn’t forget who I was even though I only visited once a month. And she never did.”

The Magic of Music

Research indicates that music transcends dementia and touches people in a way that nothing else does. Try playing music for your mom or dad. Here are some amazing resources about the use of music with dementia patients.

Alive Inside – https://www.youtube.com/watch?v=Hlm0Qd4mP-I

https://www.youtube.com/watch?v=3mz9Vy_LNu8

https://www.youtube.com/watch?v=CrZXz10FcVM

Conversations: Understanding the Loss of Independence

As dementia progresses, your parent will continue to relinquish independence such as not having money, no lock on the door, the inability to come and go as they please, etc. Losing independence is especially hard on someone who was previously very independent.

The situation is exacerbated by the “helicopter child.” Similar to the well-known helicopter parent where moms and dads hover over their children and direct their lives, helicopter children recognize the changing role between them and their parents and begin treating their parents as children – telling them what to do. Use your walker, sit down, drink your juice. These commands highlight the loss of independence as fewer decisions are made by your parent. While your directions are in your parent’s best interest, turning these statements into questions gives your parent some control when you respect their answers. Do you want to use your walker? Do you want to sit down? Do you want to drink your juice?

Conversations without Words

According to research, communication has three components: 55 percent is visual, 38 percent is tone and seven percent is verbal. Over half of our communication is non-verbal. As your parent begins to lose the ability to speak, communication still occurs when you’re with your parent. Touching may eventually become the primary way that you communicate.

Here are suggestions to improve communication with your parent:

• Avoid the use of jargon or complicated explanations. Keep your conversation as simple as possible without patronizing or sounding childish.
• Don’t ask questions that begin with why. Your parent may find the reasoning involved in giving an answer difficult and become annoyed with themselves.
• Be a good listener. Give your parent your full attention and resist the temptation to finish their sentences and talk down to them.
• Talk at a slower pace so that your parent can grasp what is being said.
• Maintain a calm and unhurried speech pattern.

Shaming

The change in your parent can be shocking. Initially, before a dementia diagnosis, or even after, you may be inclined to shame your parent. Perhaps they no longer want to bath or brush their teeth. This is difficult to understand, especially if your mom or dad was fastidious about cleanliness, for example. However, shaming usually doesn’t change your parent’s decision. But it may make you feel guilty about trying to influence a behavior through shaming.

Leaving

Leaving your parent can be a difficult time for both you and your mom or dad. Perhaps your parent has separation anxiety or increased challenging behaviors when you depart. You might want to schedule a visit around an activity in which you can leave while your parent is distracted. The staff can suggest the best time of day to visit.

My Slow Slide into Dementia

The following is a fictitious letter from a mother to her daughter about the mother’s slow slide into the devastating decay that dementia inflicts on memory.

Dear Daughter,

During the past few years, we seem to have grown apart. I know that you’re increasingly frustrated and upset with things that I’ve said and with my baffling actions. Let me try to explain.

My incessant criticizing of everything about you is because it’s my only way of interacting with you, since I can no longer carry on a conversation. This is the reason why I constantly correct you…it’s the closest that I can come to a dialogue between us.

When I don’t invite you to sit with my friends at lunch as they do with their visiting children, it’s not because I’m not proud of you as you must surmise, but because the words escape me to introduce you or talk about you.

When I embarrass you in front of people, it’s because I don’t recognize that my words will hurt you, and I only know that I’m grateful that some words actually tumble out of my mouth.

When things I say or do seem mean, I’ve been told that I’ve probably had a small stroke in the front part of my brain that’s affected my judgment.

When I don’t want to go to the movies or go shopping or do anything with you, it’s because I’m not sure how to get there any longer, and I can’t tell you the directions.

When you walk in after traveling for eight hours and I say that I need to watch the local news, it’s because I can’t find the words to converse with you; it’s not because I’m not thrilled to see you.

When I do talk, it’s usually something that I’ve fabricated, because those words seem to come easy…I believe it’s the truth.

When you want to sleep late because you’re on a different time zone, I wake you up early while I’m in the kitchen and you’re close-by, because I need to stick to the schedule which I’ve known for years.

All the times that you called, and I said that I couldn’t hear you or that I couldn’t talk because I was getting ready to go to lunch or watch my favorite TV program, it wasn’t because I didn’t want a conversation, but because my words are lost. 

When you say something funny, I don’t laugh any longer, because the words don’t have the nuance of humor for me.

When you do something nice, like walk in with flowers, and I don’t thank you, it’s because I can’t express my feelings.

For over a decade, I’ve hidden my slow memory loss from you. You used to count down the days when we’d be together. I realize that now you probably dread the day you’ll have to spend time with me. Please remember the time when I was kind, a great conversationalist and fun to be around.

My dementia has robbed us. But I’m counting on your mind to sustain great memories for both of us.

Love,

Mom

Challenges Ahead

There’s no doubt that the road ahead will present challenges. You may not recognize this person is your parent as the dementia progresses, but each encounter will be an opportunity to meet someone new, to connect again in a different way and to share experiences, so at the end of your parent’s life you’ll have no regrets on how you spent their last years.

“Over the years, as I’ve told people that I’m travelling to Florida to see my mom in a skilled nursing facility, people mention that their parent passed away. Then they invariably say, ‘I wish I had spent more time with my mother.’”

New Perspective (5)

I started my lecture to a class of graduate nurses studying the “Psychological Aspects of Aging” with the following case presentation:

The patient neither speaks nor comprehends the spoken word. Sometimes she babbles incoherently for hours on end. She is disoriented about person, place and time. She does, however, respond to her own name. I have worked with her for the past six months, but she still shows complete disregard for her physical appearance and makes no effort to assist in her own care. She must be fed, bathed and clothed by others. Because she has no teeth, her food must be pureed. Her shirt is usually soiled from almost incessant drooling. She does not walk. Her sleep pattern is erratic. Often, she wakes in the middle of the night, and her screaming awakens others. Most of the time she is friendly and happy, but several times a day she gets quite agitated without apparent cause. Then she wails until someone comes to comfort her.

I asked how the nurses would feel about taking care of such a patient. They used such words as “frustrated,” “hopeless,” “depressed” and “annoyed.” When I said that I enjoyed it and thought they would too, the class looked at me in disbelief. Then I passed around a picture of the patient: my six-month-old daughter.

Why is it so much more difficult to care for a 90-year-old than a six-month-old with identical symptoms? The infant, the class and I agreed, represents new life, hope and almost infinite potential. The aged patient represents the end of life, with little chance for growth.

We need to change our perspective. Those who are ending their lives in the helplessness of old age deserve the same care and attention as those who are beginning their lives in the helplessness of infancy.

Support Resources

There are a number of support resources for you, which may include support groups. Here are a few:

1. ADEAR Center (https://www.nia.nih.gov/health/about-adear-center)
2. Alvin A. Dubin Alzheimer’s Resource Center (www.alzheimersswfl.org)
3. Alzheimer Association (https://www.alz.org/)
4. Alzheimer Scotland (www.alzscot.org)
5. Alzheimer Society of Canada (www.alzheimer.ca)
6. Alzheimer’s Foundation of America (https://alzfdn.org/)
7. Association for Frontotemporal Degeneration (https://www.theaftd.org/)
8. Banner Alzheimer’s Institute (https://www.banneralz.org/)
9. Lewy Body Dementia Association (https://www.lbda.org/support)
10. Rosalind Carter Institute for Caregiving (http://www.rosalynncarter.org/)

Acknowledgement

Thank you, Mary Freye, RN, from the Alvin A. Dubin Alzheimer’s Resource Center in Fort Myers, for your commitment, your work and your support in identifying important material to help adult children cope with their parents’ dementia. Thank you, MaryAnne Sterling for a great list of support resources. 

Written by Barbara Lewis, MBA ([email protected])

End Notes

1. Letting Go without Giving Up, Jenny Henderson and Maureen Thom, Alzheimer Scotland, page 2

2. Ambiguous Loss and Grief in Dementia, Alzheimer’s Society of Canada, 2013, page 2

3. Letting Go without Giving Up, Jenny Henderson and Maureen Thom, Alzheimer Scotland, page 20

4. Letting Go without Giving Up, Jenny Henderson and Maureen Thom, Alzheimer Scotland, page 23

5. Dr. Paul E. Ruskin in the Journal of the American Medical Association

Does your loved one have dementia or Alzheimer’s?

I answered all these questions, Yes, when my mother was diagnosed with Alzheimer’s. What are your answers?

1. Are you frustrated with a loved one?
2. Do you feel as though you’ve grown apart from your loved one lately?
3. Do you feel as though your loved one is criticizing you more than previously?
4. Does your loved one prevent interaction with others while you are around?
5. Does your loved one embarrass you about things, which they say or do?
6. Does your loved one say things that seem mean?
7. Did your loved one stop doing things with you?
8. Does your loved one make excuses for not talking with you?
9. Does your loved say things that aren’t true?
10. Does your loved one stick to a routine even when it’s not feasible?
11. Has your loved one’s sense of humor changed?
12. Do you feel that your loved one takes you for granted by not thanking you for things that you do?