For people with dementia and Alzheimer's, sundowning syndrome is a common change…
It’s no secret… receiving a diagnosis of cognitive impairment will change a marriage. Roles will change and plans for the future may come to an abrupt stop. The spouse with cognitive impairment may feel their spouse is no longer on their side. For example, cooking, driving, medication management, etc., are taken away for safety reasons. The spouse who becomes the caregiver may take on responsibilities they never had to before.
I have noticed many similarities in the stories my patients with a diagnosis of cognitive impairment share about feeling loved and supported by their spouse, while simultaneously feeling lonely and unheard. The following are statements my patients have identified as conflicts that influence their relationships with their spouse.
“My husband/wife thinks that by telling me they have everything under control that they are making me feel better”.
Though the diagnosed spouse may no longer have the ability to manage previous responsibilities, (driving, handling finances, making important legal decisions, etc.) patients express that lack of involvement can create feelings of distress. It is important to keep the person engaged in previously managed responsibilities/roles. Your loved one may struggle with managing finances, but you can let them know the bills have been paid.
“My spouse and I don’t share the same interests and because I can’t drive anymore, I have to sacrifice my plans a lot”.
Your spouse might require supervision due to safety reasons. This does not mean they have lost interest in things/places they once enjoyed. They might find themselves tagging along at social events or running errands they’d prefer to not do. Be sure to listen to your loved one and schedule things they enjoy doing. If they want to go for a walk on the beach, but you don’t particularly enjoy the beach, consider all of the losses they have endured thus far.
“My spouse won’t let me do anything”.
It’s important to keep your spouse diagnosed with cognitive impairment active and involved in everyday household chores. Put your spouse in charge of tasks such as, opening mail, emptying the dishwasher, setting the table, etc. Remember things don’t have to be perfect; it’s okay if a spoon ends up in the wrong drawer. Modify the task if necessary. Keeping your spouse involved will help keep his/her self-esteem, self-worth, and sense of independence.
“I hate being told ‘Don’t you remember?’”
As your loved one becomes increasingly forgetful, it is likely they are becoming more self-conscious and insecure. Repeatedly reminding them that they are “forgetful” or “not listening” could be more harmful than helpful. Instead of pointing out their mistakes or limitations, focus on their strengths.
The onset of dementia does not have to signal the end of a healthy sex life. Many couples find they can still be close through their sexual relationship even when other means of expression have diminished.
Feelings of grief are common as the disease progresses, it can interrupt the couple’s ability to be intimate. The emotional impact of the disease can leave both partners lonely and frustrated. Either spouse may lose interest in having sex or being intimate.
It is important to find healthy ways to connect as a couple. Here are some tips for coping with changes:
- Reminisce together: share stories, pictures, listen to music that brings back positive memories together.
- Establish daily routines that include quiet/alone time together
- Show affection by holding hands, or snuggling
- Engage in physical activities together: walking or dancing
When one’s spouse is diagnosed with a cognitive impairment, questions regarding the impact of their sex life is normal. It is important to remember these changes are not a reflection of either spouse, and there is no right way to handle such a personal issue. While this might be a difficult subject to discuss, it could be helpful to seek support from a friend/family member, a therapist, or discuss in a support group to learn through others’ experiences.
Call Alzheimer’s Family Center at (714) 593-9630 today to take advantage of individual therapy and caregiver support groups. Your loved one does not need to be affiliated with Alzheimer’s Family Center to partake in counseling services. The only requirement is that you are a caregiver to an adult with a memory impairment.
This post was written by Renee Lorch, Associate Marriage and Family Therapist at Mind & Memory Program.