“I, Ella, take you, Seth to be my lawfully wedded husband. I Seth, take you, Ella to be my lawfully wedded wife to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death does us part.”
For many, those vows that they took 50 years ago are in the forefront of their minds when they’re determining how to care for their spouse or partner with Dementia. But often, it’s not an easy task. Caring for a spouse or partner with any type of Dementia can range from a minor bump in the road in the early stages to a monumental challenge in the middle and later stages.
What may have been a partnership and life-long friendship may now resemble more of a parent-child role. One spouse becomes responsible for the other, worrying if she or he’s simply late or has become lost on the way home.
New roles and responsibilities
You may find yourself taking on a new role in your marriage as your spouse’s memory worsens. The person with Dementia may no longer be able to perform certain tasks, such as balancing the cheque book, handling financial, tax and legal matters, and doing certain household chores. Making important decisions on your own may feel overwhelming.
To be prepared for this change in roles, it is important that you locate financial and legal documents, such as life assurance policies, property deeds and retirement annuities, soon after your loved one is diagnosed. You may need to turn to family, friends, professionals or community resources for assistance.
In some relationships, the person with Dementia accepts the guidance of his or her spouse and becomes willingly dependent on him or her for direction. In others, resentment and anger develop because he or she’s “telling what to do” all of the time.
Is lying to your loved one okay when the truth would be distressing to him? Generally, it’s best to use other techniques like distraction through a subject change or a meaningful activity, or attempt validation therapy (approach with empathy and understanding)
For example, if someone is asking where her or his mother is (and he or she passed away many years ago), validation therapy would suggest that you ask them to tell you more about their mother, or ask them what they loved about their mother.
Dementia can also trigger some ethical questions about if it’s appropriate for people with Dementia to have sex. This is because, in an established relationship, the point when someone with memory loss loses the ability to consent to sexual interaction is often difficult to determine.
You may be feeling enormous grief because of all the changes in your relationship. You are not selfish for experiencing these feelings. Given your spouse’s cognitive decline, you may no longer be able to have the same emotional or physical intimacy that you once shared.
It is typical that people with Dementia experience changes in their sexual drive. Depression can cause reduced interest in sex. Some spouses feel changes in sexual feelings toward their loved one as a result of providing daily caregiving tasks.
A physical illness and reactions to medications can also reduce sexual desire.
Changes caused by the disease may cause the person with the disease to exhibit inappropriate behaviour and increased sexual drive.
React to your spouse with patience and gentleness. Give your loved one plenty of physical contact in the form of hugging, stroking or patting.
In many cases, he or she may simply be anxious and need reassurance through touch and gentle, loving communication.
Sometimes, the most difficult aspects of caring for a spouse with Dementia are
Safety in the Home
Your loved one may demand to continue to live at home, but is he or she still safe to do so? There are several precautions you can take to improve the safety at home, and you can also bring in others to help at home, too.
Perhaps you’ve decided he or she is safe if he or she wears a GPS locator, or if you have a camera in the home. Or, maybe you use an electronically programmed medication dispenser to help them safely take their medicines.
At what point do you override his or her desire to live at home in your attempt to protect him or her?
(In another blog writing I will talk about when living at home it no longer possible)
Remind yourself: It’s the Disease
One of the most important strategies for coping with these challenges is to constantly remind yourself that those difficult things are the disease manifesting itself, not your spouse. Those spiteful comments she or he now makes then become less hurtful because you know they’re coming from their Dementia, not their heart.
Benefits of laughter
There are several published studies that demonstrate that laughter is beneficial for people with Dementia. One study concluded that the benefits of laughter for nursing home residents with Dementia were comparable to the effectiveness of antipsychotic medications in the ability to reduce
Research has shown that laughter can help the heart, mind, and body. Use it frequently. Clearly, you’re not laughing at your loved one with dementia; instead, you might laugh together at the funny things that occur. Or, you might use a familiar phrase or previously shared joke to decrease the tension. Caregivers can also benefit from a bout of laughter with a good friend. While it can be difficult to arrange to meet someone for coffee to chat, you and your loved one will both benefit if you get out once in a while.
Continue to strive for a healthy relationship
Sometimes, it’s the little things. While you will have to accept that things are changing, you may still be able to build moments into the day where you nurture your marriage. Hold her or his hand, wink at her or him across the room, or share a drink together. Give her or him a kiss and tell they are beautiful. If it’s too hard to go out to their favorite restaurant on your anniversary, perhaps you can have it brought to you.
There are also physical effects on being a caregiver for someone with Dementia, and those effects on spouses. Caregivers, spouses are more likely to neglect their own health and thus end up receiving emergency medical care, as well as to experience a high level of emotional stress.
Knowing when to get help with caregiving is important for both you and your spouse. You may be strong, smart and an amazing spouse, but none of that means you should do this alone.
Consider the professional resources in your community, the local or online support groups that may encourage you, the family members that may be able to give you a break once in a while, and the friends who ask how they can help.