Natalie Strouth is a nurse with Saint Elizabeth and the information specialist behind Ask Elizabeth, a free caregiver support service. Saint Elizabeth, a home health care company, has been a trusted name in Canadian health care for more than a century and is a national, not-for-profit, charitable organization.
In her weekly column, Natalie answers your questions about caring for a family member or friend who needs extra support -- and caring for yourself as a caregiver.
Send your question to firstname.lastname@example.org
Rebecca asks: My grandmother is getting older and was recently diagnosed with early stage Alzheimer's Disease. She is still very healthy and independently living on her own. We have talked about her desire to remain at home and independent for as long as she can. How can we keep her safe in her home?
First, I think it's wonderful that your grandmother is still very independent and enjoying her usual activities, as are many people living with early stage Alzheimer's or dementia, and that your family respects her choice to remain independent as long as possible. This is really important. However, I can empathize that the changes ahead with her memory are likely scary and unsettling.
Right now it's important to focus on what she can do, and to develop strategies for successfully doing the activities that she may find harder to do. Although she may only need a bit of help right now, it's important to plan ahead for care she will need in the future.
Consider arranging help with tasks around the house like housekeeping, meal preparation or transportation. Speak to a local community support organization, home health care organization or health care authority.
Also, create a list of phone numbers of people who help her already, what tasks they help with, when they visit, and how to get in touch with them. Post this list near her phone.
If your grandmother starts to show signs of getting easily overstimulated, having difficulty following conversations, or a limited attention span, help her to pick activities she can manage. Breaking tasks into smaller steps can be helpful. Maintaining social connections is very important, but you may find that one-on-one or small group settings are easier.
Having a diagnosis of dementia, or caring for somebody who does, is a big adjustment. However, there are many strategies and tools available to help people live well with dementia. Maintaining a healthy lifestyle, such as proper nutrition, physical and mental activity, can enhance your grandmother's ability to manage the changes she is experiencing.
Here are some additional resources to support people with dementia and their family partners in care -- and help you prepare for the road ahead:
Send your caregiving question to email@example.com. Answers may appear in an upcoming weekly column. Ask Elizabeth does not offer legal guidance, nor does it answer questions about personal health issues.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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