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.
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Kay asks: My husband has dementia and the symptoms are getting so bad that I feel like a prisoner in my own home. I am embarrassed to take him to our daughter's house for fear of what he might do or say. I don't want our kids or grandkids to see him act this way. We have also stopped going to church as it is so difficult getting him out of the house as he seems to resist everything I do for him. I am not prepared for these changes and I don't know if I can manage for much longer.
When your spouse has dementia it's painful to watch the progressing changes in their personality, almost like they are becoming another version of themselves. The more challenging behaviours include mood swings (depression), confusion, withdrawal, disorientation or loss of physical abilities. These patterns can escalate into a tidal wave of sadness, frustration, and even guilt. Dealing with personality changes can be too much sometimes even for the happiest of marriages. Older and elderly spouses, who may have health issues of their own, are especially vulnerable when they are taking care of each other.
As I have seen in my own family, professional nursing practice, and heard from many families who have called our Ask Elizabeth line looking for help, what might seem like just a slight change in personality or odd challenging behavior can be a sign of something more serious. Without professional help these behaviours can spiral out of control, leaving spouses and family members burned out and exhausted.
When challenging behaviour is a sign of something more
Sometimes sudden changes in behaviour, an inability to pay attention, increased confusion and reduced ability to stay awake can be signs of a medical problem, like delirium. Delirium is considered an emergency that requires a medical diagnosis. Some things that can cause a delirium are urinary tract infections, pneumonia, pain and some medications. You can find a description of delirium here.
People living with dementia still have the same emotions as the rest of us, but unfortunately, they lose their ability to communicate these feelings and manage their well-being. The good news is that learning new ways to understand and communicate with your husband can help both of you.
Learning to communicate with your husband
Since you are struggling with whether you can continue to manage his care at home, there are some techniques and strategies you can try for dealing with dementia and turning problematic behaviours into positive ones.
Talk to your husband in a calm, even tone, which can be reassuring for your husband. Explain things that are happening in simple steps. Try to reduce the demands on your husband and keep your routines and environment consistent and unrushed as possible.
It's very important to try and understand the cause or trigger of his behaviour, and remove the trigger if possible. People with dementia can lose their ability to communicate personal needs like needing to use the washroom or expressing pain. This can lead to your husband getting frustrated or resisting participating in things he usually enjoys, like visiting your daughter. It may seem like he is being aggressive or uncooperative, but the behaviour may be triggered by a physical symptom like pain or constipation, sleep deprivation, fear or an inability to cope with a situation.
A program called the Montessori Method for Dementia can help your husband participate in meaningful activities that can also help him express himself. People with dementia often feel they are always being told what to. The Montessori approach to dementia care focuses on re-discovering and supporting the person behind the dementia. Boredom and loneliness are reduced through activities with meaning and purpose, based on the person's needs, interests, skills and abilities. Learn more in our patient information resource about the Montessori approach.
Coping with your own emotions
It's very important that you look after your own physical and mental health. Almost 40 per cent of people living at home with moderate to severe cognitive impairment (like Alzheimer's Disease) are being cared for by a distressed caregiver, like a husband or wife. This figure increases to over 50 per cent if they are caring for someone who has verbally or physical abusive behaviours. (source: Home Care Reporting System 2007-2008, Canadian Institute for Health Information)
It can be hard to remain calm. Don't feel guilty for feeling frustrated sometimes. However, if you are often frustrated or losing your temper it's a sign that you need more support. You should also seek professional help if you are not sleeping well, losing your appetite, no longer enjoy activities and are generally more irritable and unhappy.
Your family physician, local Alzheimer Society and other seniors' resources may be able to help provide extra supports to care for your husband and yourself. There are several health professionals who have training in understanding the behaviour your husband is exhibiting. I suggest you contact your local Alzheimer Society chapter, and ask your family doctor make a referral to a geriatrician or a geriatric outpatient clinic for an assessment.
Send your caregiving question to firstname.lastname@example.org. Answers may appear in an upcoming weekly column. Ask Elizabeth does not offer legal guidance, nor does it answer questions about personal health issues.