Q: One of my friends is caring for her husband who has dementia. It is very difficult watching them go through this experience. I can tell that she is really stressed some days, but I am not sure what to do or say that might help. Can you offer some advice on how to best help her?
A: When we see friends and family go through challenging times, it can be difficult to find the right words or know how to best support that person. Now that your friend has taken on the role of caregiver, she is “giving” both physically and emotionally. She may not realize the impact these increased demands can have on her along this journey. Others see the stress; however, the caregiver is often too busy living in the moment to stop and think about it, or too exhausted to do anything about it.
Routine becomes increasingly important and getting through each day can present new challenges. Social activities and friendships can become harder to maintain. There are changes and adjustments happening in their spousal relationship that are important to understand.
The National Alzheimer’s Association outlines some key reasons for these changes:
- The spouse in the role of caregiver is taking on more tasks in the relationship, like balancing the checkbook, doing the taxes, managing legal and financial matters and making important decisions. This can feel overwhelming.
- When relationship dynamics change, there is grief involved in that loss. The connection can still be very rich and fulfilling, but it may not be the same relationship as the dementia progresses.
- As the dementia progresses, family and friends may step back, because they worry about not knowing what to say or do. This can feel isolating and create a sense of loss.
As a friend or family member, it is important to recognize the signs of stress and caregiver burnout. Then, we can discuss what you can do to help. Some of the more common signs include:
- Withdrawal from family, friends or activities
- Feeling blue or irritable
- Changes in appetite
- Changes in sleeping patterns
- Increased use of alcohol or sleep medications
- Lack of energy, fatigue
- Increased anxiety or worry about the future
- Lowered resistance to illness, increased headaches, stomach aches and physical problems
- Neglecting their own needs and personal care
So, how can you help? As a friend, there are many things you can do. The most important is that you keep showing up in different ways, and let your friend know that you are still there for her. Even the little things can make a big difference.
- Here are a few things you might consider trying:
- Educate yourself on dementia, so you are comfortable being with them both and understand some of the challenges they may be facing.
- Offer to attend a local support group with her, or stay with her husband so that she can attend a meeting.
- Just listen. She needs opportunities to talk and to share her challenges without feeling judged. Caregiving can be trial and error with good days and bad days, so being a good listener is a wonderful gift you can give.
- Help identify resources for respite care. It is so important that caregivers get a break. She may be hesitant to take one, because she feels guilty or is worried about how her husband might respond. Maybe another male friend or family member can offer to do an activity with him, so you can take her out for some girl time.
- Offer to go on a walk or out for an activity you know she enjoys.
- Offer to help with a specific task around the house.
- Send notes and encouraging words. A nice card in the mail or funny joke may be just what she needs.
- Help create opportunities for group socialization, perhaps a smaller setting that feels safe to them both, where it is OK if he repeats the same thing five times or says something out of character. They still need to feel like a couple, so host a small dinner of friends or a movie night.
- Check out some online tips and suggestions. There are some great resources available, and perhaps you can help link her to them, such as: www.aarp.org, www.alz.org, www.caregiver.org, or www.alzheimersreadingroom.com.
- Buy her a journal, and encourage her to express herself in writing when time allows.
- Offer to drop off a meal or special treat.
Your friend probably does not need you to fix the situation, feel sorry for her or pretend it will get better. Depending on the type of dementia her husband has, it is likely progressive, which will make her life increasingly difficult over time. Your friend simply needs you to be her friend, and be persistent. She may push you away at times, but gently push back and let her know you are along this journey with her. Small gestures go a long way, and careful listening will help provide you with the cues you need.
By Amy Natt, MS, CMC, CSA
(Ask The Expert column published in OutreachNC magazine August 2017)