Caring For Your Partnership While Caring For Yourself

A care partner relationship is complex and ever-evolving. To remain healthy and robust, the relationship must be nurtured in ways that meet the needs of both partners as the MS progresses over time. The partner with MS must be supported and cared for physically and emotionally, and the care parter must attend to their own physical and emotional self-care while engaging in their care partner activities. And together, the partners must look for ways to keep their relationship mutually satisfying and sustainable. This article outlines steps care partners can take to enhance the relationship while also attending to their own needs.  

Caring for the Relationship

• Maintaining balance over time (aging and disease progression)
  Relationships develop a certain rhythm and balance over time, with each partner taking on certain roles and responsibilities in the household. With aging and/or a chronic illness, the roles and responsibilities tend to shift as one partner or the other (or both) becomes less able to perform them. However, healthy relationships depend on give-and-take, mutual caring, and shared responsibilities – which means that the roles and responsibilities need to shift as people’s abilities change. The goal is for each partner to give and receive within the relationship; to feel like a valued contributor, and to enjoy support and caring from their partner. If one partner begins to feel as though they are taking care of all the doing and caring, the mutual benefits of the relationship may be lost. Similarly, if one person is consistently on the receiving end, they begin to feel less essential to the partnership. It takes attention, honest conversation(s), flexibility, and creativity to maintain as much of the balance as possible – with each partner giving and receiving to full extent of their abilities. What this means for care partners whose loved ones are severely disabled is that you may want to encourage your loved to take on manageable tasks even if you could do then faster and more easily. The more you take over, the less needed they feel. 

• The evolution of intimacy with age and/or increasing disability
  Intimacy encompasses all of the ways we connect emotionally and physically with important people in our lives. Within a partnership, our ways of expressing closeness and caring may ebb and flow depending on a variety of factors, including age, health issues, and work and family demands that sap both energy and time. With aging, a shift may gradually occur from the early urgency of sexual intimacy to a gentler passion that focuses as much on the emotional as the physical aspects of intimacy. When MS symptoms begin to interfere with sexual feelings and responses, a couple’s ability to navigate those changes often relies on their emotional closeness – their ability to be open, honest, flexible, and creative. With patience, good communication, and trust, couples can find ways of giving and receiving sexually that they may never have considered before. It may surprise you to know that physical and occupational therapists, as well as mental health professionals, can help you navigate these changes. 

• Navigating one’s expectations over time related to disability and/or aging 
  We all have expectations of what our future is going to be like. When we’re young and healthy, spry and able, the sky’s the limit. As we age or begin to deal with changes brought about by MS, the future begins to feel more limited. As we change, our expectations of ourselves and each other need to change as well. The optimal strategy for navigating these changes as a couple includes:
  • Shared grieving over altered plans and dreams
  • A willingness to do things a bit differently and adapt to the changes life brings.
  • Being gentle with ourselves and each other.
  • Finding joy, satisfaction, and humor wherever we can.
  • Respecting each other’s efforts to do the best we can. It’s a tall order that begins with open and honest conversation, listening as well as talking, and patience.  

Self-Care – Putting Your Own Oxygen Mask First

Recognizing and Caring for Your Emotional Needs 

• Recognizing that your needs are no less valid or important than your partner’s
  When one partner becomes ill or disabled, everyone – including their care partner, family members, and the MS care team – tends to focus exclusively on their needs (How is she? Is he getting better? What can I do to help her? What does he need?) To survive and thrive as a care partner, it’s essential that you attend to your own physical and emotional wellbeing as well. You have your own needs as a person and a partner (time, adequate sleep, space to think and feel, time to focus on work, connections with others, among other things), and there is nothing selfish about acknowledging those needs to yourself and communicating them to others. Without attention to your own needs, you won’t have the physical or emotional resources to give your partner what they need. Care partners who neglect their own needs may begin to lose their sense of self, as though they and their loved one are one unit that is defined by MS-related disability. Maintaining your sense of self without guilt isn’t selfish, it’s a priority.  

• Managing socially unacceptable feelings
  Even the most loving and devoted partner will experience feelings of resentment, anger, frustration, and impatience from time to time. There are no feelings that are “off limits” or taboo. However, there are many feelings that aren’t socially acceptable, primarily because they make other people feel uncomfortable. When’s one’s partner is ill, physically and/or cognitively impaired, societal pressure is on the care partner to be endlessly selfless, caring, and patient – or, at least that’s what we believe society is telling us. But we all have feelings that don’t feel “nice” or “proper” or “selfless.” It’s what we do with those feelings that matters. The most important thing you can do with those feelings is acknowledge them, talk them over with someone who can understand and support you, and give yourself grace. Your feelings – the good, the bad, and the ugly – are simply your inner responses to what’s going on in the moment. So think about what those feelings are telling you and what steps you might take to make things easier or more comfortable. 

• Recognizing your limits
  Every one of us – no matter how loving, generous, or caring we are – can reach their personal limits. Sometimes you may reach capacity by the end of a long day and just need a good night’s sleep to bounce back. Other times, you may feel the need for a day away to spend time on yourself. But if you are care partner whose days and nights are filled with hands-on caregiving activities, you may find yourself feeling all used up. All of you – your energy, your emotions, and your patience may be tapped out.  

Here are a few red flags to consider: maybe you are relying on alcohol or recreational drugs to ease the pressure; perhaps you are “losing it” or lashing out in ways that don’t feel like you; you may even find yourself handling your loved one more roughly than you mean to, or leaving them alone for much longer than is safe or comfortable for them. These red flags don’t mean you’re a bad person or a selfish person. They mean that you are tapped out emotionally and physically – and need help and support for yourself. You can find organizations and resources on Care Partner Connection, and consider joining the Can Do MS Quarterly Care Partner Meetups to share experiences, strategies, and resources with others with similar challenges.  

Navigating Partnership Boundaries

• Limit-setting skills – why they’re important
  The ability to set limits – with ourselves and with others – is essential to our physical and emotional wellbeing. There is nothing selfish about having limits; in fact, being able to maintain healthy limits for ourselves is essential to “going the distance.” No one can go “full-tilt-boogie” day in and day out without reaching a point of exhaustion. Here are a few examples of healthy limit-setting: 
  • “I need some uninterrupted time to get my work done. I’ll come in every hour to see if you need anything. Please think about everything you need me to do or get for you while I’m there.”  
  • “When I get home from work, I need 20 minutes to (change, shower, spend a little time decompressing, exercise….) before I (start dinner, sit down to chat, take care of stuff around the house….).”  
  • “I’d like us to get a commode to put by your bed so that night-time bathroom trips are quicker, easier, safer. This way we’ll both get more sleep.”  
  • “I know you’re embarrassed about taking your (cane, walker, rollator) out in public, but I need you to do it for me. It’s (tiring, painful, awkward) to support you (when we’re walking, socializing, going to a museum….) and my (back, neck, hips….) are really starting to give me a problem.” 

• Recognizing when your loved one seems to be – or is – punishing you when you attend to your own needs and priorities
  Sometimes care partners feel that they are being punished for wanting to have a life that includes self-care activities like hobbies, social activities, sports, time alone. This punishment may take a couple of different forms: 

• • Recognizing “payback” for doing things that are important to you 

• • Coming home to a bowel movement that you need to clean up 

• • Coming home to your partner on the floor after trying to do something independently that they’re unable to do 

• • Coming home to a partner who greets you by picking a fight 

• • Recognizing manipulation that is designed to make you feel guilty 

• • Pulling a “sad face” as you get ready to leave 

• • Suddenly experiencing severe weakness /fatigue that wasn’t there before you were planning to go out 

• • Asking you to do a list of things when you’re on your way out 

If you notice a pattern that feels like punishment for your self-care activities, it’s essential to talk about it: identifying the behavior, saying how it feels, summarizing events that feel like retaliation and asking “are you trying to tell me something here? 

• Your partner’s responses may vary from “That’s not true” to “Yes-it makes me angry/sad/resentful/envious when you go out and leave me.” 

• Chances are, you’ll need to have this conversation multiple times to make any headway.  

• It’s important to be able to listen as well as talk, and to assess your own behavior honestly. 

The bottom line is that as a care partner, you have a right to have a life of your own. You and your loved one are navigating a very challenging situation in which each person’s needs are important and deserve respect. It’s essential to achieve a series of compromises that work for both of you – and if you’re unable to achieve that on your own, working with a mental health professional can be very helpful.  

Renegotiating Parent-Child Boundaries 

Adult children with progressing MS may find themselves unable to live independently after many years of being on their own. They may come back to their parents’ home for a variety of reasons, including needing care and assistance, loss of income, or simply having no place else to go. The parents of adult children are often at or near retirement age and looking forward to a long-planned-for-time of ease and relaxation. They may also have been anticipating their child taking care of them. When this happens, these parents and their adult children need to navigate a new parent-child relationship, including “house rules,” finances, sharing of responsibilities where possible, and any other issue that might become a source of conflict. A family therapist can be invaluable when trying to sort through these issues and come up with a plan that works for everyone. The book, “Multiple Sclerosis: A Guide for Families (3rd ed.)” has a chapter devoted to this family challenge.  

The needs of the ‘sandwich generation’
Many young adults with MS may find themselves caring for aging parents and young children while also trying to attend to their own health and wellness. There are no easy solutions here, but it helps to think through your roles and responsibilities and write them all down on a piece of paper. Estimate how much time they take you – and how much energy – and then figure out what time is left for you. Be thorough and honest. Then sit down with your partner, other family members, or friends, and share the list with them. Let them know when and how they can help. Be specific. It doesn’t help to simply say “I can’t do all this; I need help!” Most people are willing to help and support you, but they need specific requests and specific times. Showing them a list of ways they can help and allowing them to choose the activities that fit best into their own schedules will help this process go more smoothly. And don’t forget to reach out to the MS Advocacy organizations for help and support as well.