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This week, I wanted to start the conversation about an issue that is a common concern for couples when one person has cognitive decline: changes in intimacy and particularly physical intimacy. This topic is sometimes difficult for the couple to bring up to providers, and providers may not think to ask about it.
I asked our colleague Dr. Glenn Smith, who has significant expertise in this area, for some time to talk about this issue. Below is our exchange. I hope that if you have any questions about intimacy issues, you will feel empowered to talk to others (including your provider) about it. I also hope you find some suggestions that might help you in our discussion below. Please feel free to comment here as well if you have experience with intimacy/relationship changes in your journey with MCI and ways you may have handled this with your partner.
My Discussion with an Expert
Dr. Dona Locke (DL): Dr. Smith, thanks so much for your time—intimacy can be a difficult topic to discuss in many areas, and for those with memory problems it is no different. What are the most common intimacy issues you see with the couples you work with in the HABIT program?
Dr. Glenn Smith (GS): As you know, in HABIT we refer to the person with MCI as the participant and the person supporting them in the program as their partner. Partners in the program are most often spouses as opposed to adult children or other types of partners. It is challenging for couples in the HABIT program to raise issues of intimacy they may be experiencing. Often they seem to feel that there are more ‘pressing’ issues. However, I think a key pressing issue encountered in the program is closely linked to intimacy issues. In HABIT, we often confront the role changes that are starting to surface because of the MCI. Many partners do not yet see themselves as caregivers, but they are increasingly aware they are taking on what might be seen (by themselves and others) as supervisory roles. The mutuality of the typical romantic relationship is shifting. More than one partner has said some version of “the more I feel like I am parenting the participant, the more I struggle with our intimacy.” Yet MCI is a condition where both the participant and the partner really need ‘validation.’ They need the reassurance that in spite of the cognitive and role changes they are still okay and still connected. And the intimate connection we associate with sex often serves as a strong form of this validation.
DL: I imagine that, to some extent, it can be helpful for the couple to discuss how MCI impacts some of the dynamics in their relationship openly with a therapist. Beyond that open communication, are there specific examples of recommendations you make for couples with intimacy concerns?
GS: In HABIT we are working with couples to find new HABITS to maintain a quality of life in spite of MCI. This philosophy can extend to how they couple connects in their relationship. I think it starts with overt expressions of appreciation and gratitude for how hard each person is working to address the MCI. Increasing verbal communications of reassurance and love can go a long way towards the validation I mentioned above. And then consciously increasing touch through handholding, hugging, and sitting close. Then strengthen these behaviors into habits.
DL: Do you have suggestions for providers like me working in this area for how to query their patients about concerns in this area?
GS: Providers should actively explore role changes with couples confronting MCI. Often just discussing a partner’s frustration with having to take over activities the participant once completed is a gateway to discussing the undeniable loss that there is in MCI. For the participants there is a sense of a loss of wholeness and independence, for the partners a sense of loss of the equal partner. These explorations of loss often segue to discussions of changes in intimacy.
DL: For patients, is there a certain type of provider with whom you’d recommend they raise concerns about intimacy?
GS: I think one of the best places for partners to raise such issues is not so much with healthcare providers per se but in partner support groups. Sharing and normalizing these challenges with others on the same journey can be very helpful.
DL: I really love that suggestion--what a good idea! So often we hear from our patients and partners that "It is just so good to know I'm not alone." I imagine this topic is no different in that respect. And again, some of the most well received suggestions are those our patients and partners receive from each other. That said, are there any intimacy related changes that might indicate a new medical issue or neurologic problem such that you’d recommend the couple mention to their medical provider for further evaluation?
GS: There are two key issues I would flag that might require medical awareness and attention. The first and relatively infrequent situation is when the participant becomes ‘hypersexual”, or persistently interested in sex, and may be making advances that seem inappropriate both in terms of time and target. This can be an indication of disinhibition resulting from changes happening to areas of the brain involved in the judgement and impulse control. Providers may wish to evaluate further for a brain basis for these changes and work with you on managing such behaviors. The second and more common change would be when a participant or partner shows an uncharacteristic loss of libido. This may be a symptom of a lack of initiation and interest in general that comes with certain neurodegenerative conditions. In the context of sleep and appetite changes, as well as increased sadness or irritability, intimacy changes may be another symptom of clinically significant depression, that might be highly treatable.
DL: Dr. Smith--thank you so much for you time! To our readers either living with MCI or partners of those living with MCI, we'd love to hear your feedback on this topic, and any suggestions YOU have for maintaining valued intimacy and connection even when memory change is present.
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This is a great post and one that probably touches everyone who has experienced MCI - whether they are the patient or the partner. I would expand the topic to go way beyond sexual intimacy. I remember at the very beginning feeling almost "abandoned" because my husband would no longer talk to me when we were traveling. Once he was diagnosed, I realized that he had to concentrate so hard on driving that anything else was a distraction - even music in the car. Of course, it wasn't long until he was no longer driving. But still, intimacy comes in many forms. It can often just be someone who listens to you, puts his/her arms around you, and gives you support. Even this kind of intimacy is often lost with MCI because the person truly can't maintain the kind of focus this requires. It is sad.
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6 ReactionsIntimacy is so difficult. For the first 30 years of our relationship we danced everyday in our living room. I miss those days. The little moments of intimacy I can find are so precious-even if it’s just Jan falling asleep on the couch with her head in my lap. There is little to no meaningful conversation @debbraw, I feel your sadness.
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8 ReactionsThank you so much for your comment @debbraw! I could not agree with you more. Intimacy has many forms. I did want to highlight sexual intimacy changes as those are often difficult for couples and providers to talk about, but I absolutely agree that intimacy has many forms all of which can be impacted by MCI. Like @joancampy said, I also empathize with this loss and the sadness you much feel. In your example of not talking during travel--I'm curious--once you figured out the cause, were there ways you found your connection to your husband again in different ways? I like @joancampy's example of Jan falling asleep with her head in her lap.
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4 ReactionsOh yes @DrDonaLocke - we still have many moments of connection - and I would call it intimacy. The other day, he got up, got his coffee and went outside to drink it. I'm used to that. But this particular day, he came back in and said - I didn't kiss you good morning. It was such a joy to me that he had that memory and acted on it. It's not every day... be we definitely still have times of important - and healing - connection.
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4 ReactionsYour comment is interesting to me. My MCI partner is still driving safely. I have noticed that we can't talk when he is driving-I couldn't figure out why. I suspect it is because he has to concentrate so hard that he can't manage the distraction. Thanks for helping me understand.
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3 ReactionsThank you all for your comments. I have learned some new ideas about intimacy from you and seeking couples therapy is a great idea!
About 10 years ago, my husband Will had radiation treatments for a tumor that left him impotent. Our sex life was over, but through the years, I have learned that humor and laughing have helped Will and I to become more intimate. He has a routine every morning to kiss and hug me and again at bedtime. During the day, I give him a hug or kiss “just because” or rub his back, which he loves. We always hold hands when walking together. He makes breakfast for me and helps me make lunch.
On the other hand, he needs help with the computer or his phone, or something, he always seems to have an ailment of some kind and comes to me, and also when he has lost something. I don’t think he understands the pressures I have since he has had Dementia: taking over finances, making important decisions, the hours spent waiting in the ER and in the hospital, giving up my life to care for him. He really is not aware of any of this and he has always been this way. He expects a lot from other people because he doesn’t understand what they are going through. The other day I had to close a window (again) because he was cold and I got angry because I always have to give in and close all the windows and I can’t leave any open for fresh air. He got very hurt with my anger and started to cry. I had made him feel bad about his choice. I felt so sorry and tried to comfort him. I don’t want to hurt his feelings or see him cry. Never!
So now he puts on a fan if he closes a window, and thus validates my feelings. Very sweet!
So I will try to keep my frustrations away from him and find another way of dealing with them.
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1 ReactionThis thread has really made me feel somewhat better. Being a caregiver is the most rewarding opportunity to truly serve someone who was and in different ways still is your constant best friend and partner in all areas and it is the most difficult and frustrating role that cannot be prepared for in advance. However, there are moments that keep me going and looking forward to the next moment. For example, my hubby and I were sitting on the couch and he looked at me and said, "Is it possible to fall in love all over again." I was stunned and so deeply touched. Then a few days later we went out to our favorite restaurant. He asked me if there was any place to go for a walk? (We live in a town where the nature walks are hot amd dirty and I was a little too dressed up for sweating) ....so my answer was that I couldn't think of one, and he said, "What about the mall or something? You are so pretty that I just want to show you off. " (I am not "pretty" - but he sees me as the most amazing person - and I am deeply touched amd amazed that even in this terrible journey of LBD with Parkinsons there are moments that still take my breath away.)
He does still drive, but he is handing the keys over more and more....however he just drove about 7 hours straight and the next day, he "let me drive two hours and he did the other four hours so we could go visit his 93 year old mother - there was no music and very little conversation. When we arrived he was very confused and could not make his words come out correctly. This upset his mom and of course I felt frustrated because he would not give up driving to let me help him. (It is hard for former pilots to give up control of anything that moves.) Now that we are here and rested some, he keeps asking when we are going home.
I realize that I have to a degree gotten off the topic of intimacy, but somehow in my mind all of this is related. If I drive he is anxious because he is not in control, if he drives, he is using so much energy that he is worn out quickly. I am going to end here, but the next time I write I would like to focus on sexual intimacy and hope for answers in that line of problems.
Hoping for good moments for all of us,
Jan
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3 ReactionsThank you for this post @teacher502. I can see how your husband's career affects his current difficulty with cognition. How great that you can read between the lines. I will look forward to your next contribution on sexual intimcy.
May you have comfort and ease.
Chris
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