Alzheimer’s disease may have an effect on your relationships

While your abilities may change over time with Alzheimer’s, how you continue to be a partner in your relationships can impact your ability to live well with the disease. Establishing and maintaining meaningful relationships throughout your Alzheimer’s experience can enhance your ability to stay both physically and emotionally healthy.

hanges in Relationships

Alzheimer’s may affect your relationships. While your abilities may change over time, your ability to live well with Alzheimer’s depends on how you choose to continue to be a partner in your relationships.

• How Alzheimer’s affects relationships
• Role changes
• How to keep your relationships positive
• Intimacy and sexuality

How Alzheimer’s affects relationships

It is crucial to remember that you are still the same person you were before the diagnosis. However, after sharing your diagnosis, you may find that others are uncertain about how to respond. Some individuals may shy away, while others may be eager to stand by you and provide support. You may find that people with whom you once had a close relationship are now uncomfortable talking to you or asking you about how you are coping.

Establishing and maintaining meaningful relationships throughout your experience with Alzheimer’s can enhance your ability to stay both physically and emotionally healthy.

It can hurt to realize that certain family and friends you thought would be there for you can’t meet your expectations now. They may have discomfort about your diagnosis, as it stirs up fears about their own futures. People who can’t be a part of your support circle now may join later once they have had time to adjust to your diagnosis.

You may find it difficult to participate in social activities or interactions that were once enjoyable for you. Anxiety, frustration or loss are common emotions that you may experience about changes in your ability to follow a conversation, stay focused with competing background noise, or have enough energy to participate in social activities. For many, these changes in relationships can lead to isolation, withdrawal and depression, which can have a negative impact on your physical and emotional well-being. Learn how others are coping with Alzheimer’s and changing relationships by joining our ALZConnected message boards and seeing Tips for Daily Life.

Role changesback to top

As your abilities change, there will be changes in your roles and responsibilities with family and friends. As a result, you may feel:

• Excluded from conversations about long-term planning and other important decisions.
  1. – Family members may have conversations or make plans for the future without
       your presence or feedback.
• Loss of independence or specific functions that were your primary responsibility.
  1. – Those close to you may feel the need to make the decision for you about when to
       stop driving.
  2. – You may experience a loss of employment or a loss of your role as a bread-winner.
  3. – Others may feel that you should no longer make financial decisions.

   

  “The hardest thing that I’ve had to overcome is realizing a lot of what I used to do has been passed on to my wife.”
  Lee F., person living with Alzheimer’s

• Fear of burdening others with a caregiving role or other responsibilities that you once managed.
• Becoming more dependent on spouse, family or friends.

All of these issues and feelings can affect your relationships. You may find that those closest to you have good intentions, but may provide help that feels invasive or unnecessary at times.

It can be difficult to do, but adapting to changes and accepting help from others can be a way to acknowledge the value their assistance brings to your life. The more you can be involved, the fewer negative feelings you may have.

How to keep your relationships positive and productiveback to top

• Be open about your feelings.
  Share your experience living with the disease.
• Be specific about how you would like to continue relationships and how you would like to be treated.
  Let others know what social activities you feel most comfortable doing and the best ways to share time together.

   

  “On the positive side, we have learned to work together to support each other in new ways.”
  Julie A., person living with Alzheimer’s

• Learn how to ask for help.
  Tell others how they can help and your expectations for support.
• Strengthen trusting relationships.
  Focus on those relationships which are supportive, and show your gratitude for the people you love and appreciate.
• Reevaluate relationships.
  Don’t dwell on people unable to support you at this time or are unable to have a positive presence in your life. Give them the time to adjust to your diagnosis. Try not to take their pulling away personally.
• See yourself as unique and human.
  You have much left to experience.

Intimacy and sexualityback to top

Throughout your life, your need for physical and emotional closeness and your sexuality and how you experience it, undergo changes. Some of these changes come with maturation, while others reflect changes in life circumstances, such as a diagnosis of Alzheimer’s. The disease may affect sexual feelings and behavior. Take your needs and expectations for intimacy into consideration as the disease progresses.

If you have a sexual partner, openness about sexual changes is a key part of maintaining closeness. The more open and honest you can be with each other, the more you can avoid assigning blame, feeling guilty or lowering the self-esteem of either partner. It is important to educate yourself and your partner about the changes that occur and how to respond appropriately.

Your interest and expression of intimacy and sexuality may be affected by Alzheimer’s in the following ways:

Changes in roles and responsibilities: You may experience uncertainty, frustration or reduced confidence because you need help with things you once managed on your own. These emotions may lead to stress and changes in feelings toward your partner. Your partner may experience some of these same feelings and may need to make adjustments if there is uncertainty about your comfort level with sexual contact or activities that were once pleasurable for you.

Medical issues: Depression can lead to a loss of interest in sex. Speak to your doctor if you or others have expressed concern about your emotional health. Some medications may have side effects that alter your sexual desire. As the disease progresses, you may experience significant increases or decreases in your sexual behavior. Speak with your doctor if these changes are problematic for you or a partner.

Tips for coping with changes in intimacy and sexuality:

• Accept that changes in your intimate and sexual relationships will occur over time.
• You may want to explore new ways to express sexuality and obtain satisfaction. This may include non-sexual touching or sharing memories about intimate moments.
• Communicate with your partner. Discuss new ways to connect and express closeness in ways that are mutually enjoyable.

Download Sexual Relationship Changes and Alzheimer’s

TIPS FROM PEOPLE WITH ALZHEIMER’S

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Handling relationships

1. Remember that your care partner or others close to you did not ask to be put in this situation either. They have fears and frustrations too. Working together may make the situation much better.
2. If longtime friends shy away, remember your best and real friends will stay with you. Invest your time and energy in them.
3. When you feel a loss of equality in a relationship, let the other person know what he or she did and how it made you feel.

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Why I Walk… Peggy’s story – Alzheimer’s

I walk to honor my mother, June Martino. She would have been 82 years old. I had to stop and think about that for a minute. Mom used to fib about her age so much, it was hard for me to keep track. She never looked her age and saw no reason to share its truth. She remained beautiful to the end, but Alzheimer’s changes everything. It takes and takes, but it didn’t get her heart.

Why I Walk…Peggy’s story

I walk to honor my mother, June Martino. She would have been 82 years old. I had to stop and think about that for a minute. Mom used to fib about her age so much, it was hard for me to keep track. She never looked her age and saw no reason to share its truth. She remained beautiful to the end, but Alzheimer’s changes everything. It takes and takes, but it didn’t get her heart. The essence and the soul of her were always there. I was lucky to be given so many moments that I treasure and hold on to, especially on those days when sadness threatens to overtake. Those moments are life-giving. With all its challenges, Alzheimer’s brings out the best and the worst in all involved. It hits at the emotional core. For me, it taught the beauty of unconditional sacrificial love; the sweetest, purest kind.

Life changes – it has to. We are called upon to role reverse, to make difficult choices, to live its stages – alternate between hope and despair – and on the toughest of days, pray to land somewhere in the middle. The Alzheimer’s Association pointed me in the direction of invaluable support groups. There is strength and purpose in being with people who know what you are going through. Everyone is at a different stage, but in sharing, we know what to expect, it is less frightening and you don’t feel quite so alone.

Though everyone’s story is different, there are commonalities… the wandering, hoarding, layering, sundowning and extreme changes in personality. For the caregiver, the underlying themes are the same… sadness, compassion, empathy and despair. We get so tired of the decline and what each step down the ladder means. Aren’t we tired of this disease? Isn’t it time for it to be over? The cure is out there. I walk to fund and find it.

My mother was my best friend. I miss her every day. It would seem that everything I do cycles back or is connected to something she taught me or that we did together. She faced this disease with courage and strength. But don’t they all? I met so many brave, valiant souls. I walk for all of them. How frightening it must be to not know what is happening, to have your world get smaller and smaller, and have so much of it consumed with change. For most, the journey with Alzheimer’s involves tests, hospitals, nursing homes, a variety of doctors and caregivers; a loss of all that is familiar. I am telling Moms story through creative, artistic windows: ALZHEIMER’S. A WINDOW INSIDE. OUR STORY.

When Mom was first diagnosed I had a telling dream…it showed her, this once vibrant woman, just sitting and staring out a window. It was chilling, but it is the story of Alzheimer’s. We all have our story windows. In writing about the windows we lived together and those that I am living now, I am healing and trying to help others. I walk because this is my window of opportunity to make a difference. Every day we are given choices — what to do with our time, our money, and our passion — the wise choice is always one of the heart. There is a cure out there. We must find it for all those that still suffer and for all of us that wonder and fear that we could be next.

My mother is free today and whole. I will see her again one day in heaven and that will be for eternity. God was good. He was there, walking in front, alongside, and in back of us throughout our 10 year journey. (Philippians 4:13) May I ask, that when we see the color purple – anywhere, let’s use that as a prompt to pray for those that still suffer and for those that love them. Thank you for giving me the privilege of sharing Mom with you. I leave you with a window of hope. There is always hope. Each new sunrise gives us reason to hope. This could be the day! With one hand raised towards heaven, I will join others September 25th on Chicago’s lakefront to walk and find the cure. Lord, may it be so. Happy Birthday mama. I miss you every day. Every day I miss you. Love you!

Walk to End Alzheimer’s would not be possible without the support of our fantastic volunteers. We count on the invaluable contribution of time and energy of our dedicated volunteers to make the event a success. Sign up today and let us know how you’d like to help! – See more at: https://www.alzheimers-illinois.org/enewsletter/weekly/2016/sept/01/Walk.asp#sthash.NSI03NaT.dpuf

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Experimental Alzheimer’s drug shows promise against brain plaques

An experimental drug called aducanumab dramatically reduced the toxic plaques found in the brains of people living with Alzheimer’s disease, according to results of a Phase1b clinical trial designed to test safety and tolerability rather than effectiveness. The results, previously reported at the Alzheimer’s Association International Conference® 2015 (AAIC®), hinted that the drug may also be able to slow the loss of memory and thinking. Experts caution that additional, larger studies will be necessary to determine if aducanumab has an effect on slowing down Alzheimer’s.

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Inside: A special gift for you – Alzheimer’s Association

When you make a generous donation to the Alzheimer’s Association today, we’ll send you our stainless steel travel mug with our thanks.
This is our limited-edition stainless travel mug available exclusively for friends of the Alzheimer’s Association. You can use your new travel mug as you run errands or visit friends and family while showing your support in the fight against Alzheimer’s disease.

Your support is so important because every 66 seconds in the United States, someone develops Alzheimer’s. But through care, support and research, we’re working every day to fight it. You can help by making a gift today.

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Learn from the comfort of your home in September

3 New Topics:
Medications for Alzheimer’s and other Dementias: Benefits and Side Effects,
How to use simple physical activities to benefit people with dementia, and Improving cognition: How to use the senses for people with dementia

1 Program by Phone: Held the second Tuesday of every month
Medications for Alzheimer’s and other Dementias: Benefits and Side Effects

Tuesday, September 13, 2016
noon to 1 p.m.
Dr. Stephanie van Ulft, MD
Geriatric Psychiatrist, SIU School of Medicine
What medications are currently available to treat Alzheimer’s disease and other dementias? Are the benefits worth the side effects? Dr. van Ulft, a Geriatric Psychiatrist, will discuss how these medications are prescribed, how they work, and what you can expect from them.


2 Webinars: Live interactive program conducted through the internet
How to use simple physical activities to benefit people with dementia
Tuesday, September 13, 2016
11:00 a.m – 12:00 p.m.
OR
1:00 – 2:00 p.m.
Learn about simple activities that yield great benefit for people with dementia, regardless of the stage of the disease. Some involve concentrated effort while others are as simple as doing tasks a bit differently – understanding how physical activity benefits our brain makes all the difference.
Improving cognition: How to use the senses for people with dementia
Wednesday, September 21, 2016
11:00 a.m – 12:00 p.m.
OR
1:00 – 2:00 p.m.
All memories are created in the brain with the help of the five senses, and some senses are more powerful in the memory-making process than others. Understanding the role the senses play in cognition and memory can equip us to help those with memory loss live fuller lives. Join us to learn some creative ways to harness all the senses throughout the day in order to help loved ones with dementia.

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