Questions and Answers
Responses are provided as general educational resources and should not be interpreted as diagnoses, prognoses, or treatment suggestions. Information and perspectives represent the views of the individual author(s); Can Do Multiple Sclerosis is not responsible for the accuracy or currency of the responses. Readers should consult with their healthcare team.
As my MS advances, I feel like I’ve become more of a spectator and burden to others. My husband spends all his time worrying about me and caring for me. He deserves more than this, and I feel like I'm not deserving of the time that I impose on him and other people. How do I deal with the guilt of being a burden to my family?
Clinical Psychologist Response
Gayle Lewis, Ph.D., MSCS
Can Do MS Programs Consultant
Feeling that the people who support and care for you, in fact, see you as someone who, for lack of better terms, is a pain in the ass in their respective lives is certainly an awful feeling and an all-too-common burden for people living with MS and many other conditions. However, I would suggest that the actual burden you are creating is more profound from your subjective perception than it actually is to them.
My first question – do you have any actual evidence that your husband and family see you and experience you as a burden? Has anyone actually said so or alluded to this feeling? The most direct answer to your question on dealing with the guilt is to communicate your feelings honestly and openly to your family, and provide them with the opportunity to honestly and openly communicate their feelings with you. A therapist can help facilitate this dialogue.
Yes, dealing with MS as the patient IS a big responsibility, accompanied by many daily issues to be dealt with, on your own and vis-à-vis the assistance of others.
And, yes, the stress of daily assistance can take a physical and psychological toll on the caregiver, causing caregiver burden. Caregivers are often reluctant to ease their own burden and take care of themselves. However, early recognition of caregiver burden can help you and your loved ones determine appropriate interventions. Ultimately, your family loves you and they are invested in caring for each other. Focusing on “who deserves or doesn’t deserve” being part of this team is a zero-sum game. Instead, you can focus on the positives in the lives who have lead together and will continue to lead in the future. The National MS Society has actually found that MS can draw partners more closely together as they provide deeply satisfying care and meet the challenges of caring for a loved one with a chronic illness.
Without being too much of a sideline therapist who knows nothing about you except the worry I feel in your question, could it be that you are projecting your own self-hate and anger about what MS has taken away from you and complicated your life onto your husband and family members? In other words, are you assuming that they all feel taxed by your MS and its progression because you feel that way yourself?
Let’s say this is the case….and/or that your loved ones DO feel burdened and overwhelmed by your MS…I would recommend individual therapy for both you and your husband, as well as couple’s therapy for the two of you to talk about these things in a safe space. Group therapy would also be helpful to share with others going through the same concerns/experiences and learn from their own helpful insights.
Again, this is cursory guidance as your situation requires individualized attention from a mental health professional. However, you have taken a great first step by recognizing your concerns and seeking information to cope. I hope you will continue to use Can Do MS as a resource. For more information, I would suggest watching this webinar on supporting family members and this webinar on relationship issues in MS. There is also a great video on coping and managing complex care needs in advanced MS.
Over the last few years, I have noticed a significant increase in my forgetfulness, disorganization, and clumsiness. At the same time, I have all but lost my sex drive. Are these symptoms “normal” for MS? I just need to figure out what is wrong with me! It’s like my doctor has given up; all they want to do is prescribe me more pills. Is there anything else that may work?
Pilar Poal, Ph.D.
Can Do MS Programs Consultant
Thank you for your questions. I can appreciate your frustration with your current symptoms and feeling that pharmacological support is not enough. These are common symptoms of MS, and they can at times be puzzling and disconcerting.
We know that brain lesions associated with MS can have an impact on cognitive functioning. While some of the current pharmacological therapies used for MS may slow the progression of cognitive changes, using compensatory strategies can reduce the impact of decreased memory and organizational skills on your daily life. If you have access to a smartphone or computer, there are many free programs that can assist with reminders, lists, logs, calendars, and other tools. However, basic paper planners or boards can also get the job done. My recommendation would be to keep it simple, find one or two tools that work for you that are easy to incorporate into your daily routines. For more tips on organization and overcoming forgetfulness, check out this Can Do MS webinar and article.
If you feel that your cognitive symptoms are worsening and significantly interfering with your daily life, you could discuss with your doctor the option of getting a referral for neuropsychological testing and cognitive rehabilitation.
Decreased coordination, which you describe as clumsiness, is a common symptom of MS and can be related to other MS symptoms, such as decreased balance, muscle weakness, spasticity, or fatigue. It may help to explore which ones are contributing the most to the decrease in your coordination. Then, you can develop a plan with a physical therapist to specifically target those areas. Note, however, that fatigue is likely to amplify these and other MS symptoms, so learning to pace yourself throughout the day and make adjustments when you identify the beginning signs of fatigue can be a helpful strategy.
Exercise may also help with your "clumsiness." Read this Can Do MS article for more information on the benefits of exercise on balance and coordination.
In regard to your concerns regarding sex drive, this is also a common consequence of MS and is associated with many factors. Sexual functioning can at times be directly affected by the neurological changes caused by MS. Other times, some MS symptoms such as spasticity, restricted movement, changes in sensation, bladder functioning, and fatigue can have an impact on sexual functioning. In addition, body-image, relationship concerns, and expectations can also affect sexual drive. A good place to start would be to communicate with your partner regarding your concerns about your decreased sexual desire and to enlist his/her support so that you can address them together. Exploring the impact that physical changes, relationship roles, fears, and expectations may be having on your sexual drive can help clarify what is happening and identify possible ways to address your concerns. In addition, it is important that you share with your partner what type of physical touch is pleasurable and what feels uncomfortable or painful.
Another recommendation would be to broaden the way you think about physical intimacy with your partner so that you can have more ways of being physically close to each other. Explore together what changes may help you get in touch with the more sensual parts of yourself and possible situational factors that may increase your sexual interest (i.e. location, time of the day, leading up activities, etc.) While fatigue and other physical symptoms of MS may, at times, affect your sexual desire, sharing your needs with each other and exploring new ways to be emotionally and physically intimate will promote closeness in your relationship and minimize the chances that your decreased sexual desire will create feelings of distance or resentment between you and your partner.
For more insights, please watch this Can Do MS webinar, "Keeping Your Relationship Alive: The Physical and Emotional Aspects of Intimacy in MS."
I am a caregiver of a 65yr old female with MS. I have noticed her recently becoming very weak and unable to move when using her walker. What should I do? Also, how I can help her exercise and stretch in light of these increasing mobility issues?
Amanda Rohrig, PT, DPT
Can Do MS Programs Consultant
Serving as a caregiver/support person for someone you love can be a truly joyful blessing that can offer many benefits to both parties. It is also a responsibility that, at times, have heavy tolls- physically, emotionally, and mentally- even though you feel proud of the role you play in your loved one’s life. You may find yourself experiencing a wide range of emotions as you adapt to the day-to day variability of this unpredictable disease. Knowing when to help and how to help when changes occur can be challenging. Despite your questions and concerns, please remember your attention and care make a huge difference!
First, I would recommend having an open conversation with the person for whom you are caring. Confirm that she is experiencing what you are observing. Then, potentially together, consult with her health care team (especially a physician or MS nurse) to determine if there are any appropriate and/or necessary changes that need to occur with the medical management of her MS, as well as a request for a prescription for physical therapy. A consultation with a physical therapist who understands MS can help to identify abilities and areas of improvements. For example, there may be alternative bracing or mobility devices in combination with specific exercises that may be helpful. Often, implementing some key fatigue management strategies or environmental changes can help, too. Most importantly, identifying when to help versus when to empower the person with MS to do an activity or exercise independently is key to strengthening mobility and for both of you to live well with MS.
In conclusion, seek that consultation with a physical therapist to help both of you learn to optimize exercise and mobility. In the meantime, consider education and investigation into some of the online resources from Can Do MS (there are some excellent webinars and articles pertaining to exercise, flexibility, and mobility are available on the CDMS website, www.mscando.org) and the National MS Society (www.nationalmssociety.org). I would encourage you to explore the Stretching for People with MS as well as the Stretching with a Helper for People with MS manuals from the National MS Society. These 2 resources would be appropriate to bring along to a physical therapy session. With the help of a PT, you and your loved one can identify and prioritize those that may be appropriate for your situation. Thank you for your question and best wishes for health, wellness, and happiness!
Finally, join me and renowned psychologist Roz Kalb, Ph.D., at the upcoming Can Do MS webinar on support partners. This free, interactive presentation will offer some great suggestions on the types of questions you are presenting here, and will connect to MS care experts that can provide support, as well as other caregivers going through similar situations. You can register for this webinar, broadcasting live at 8pm Eastern on Tuesday, October 11 (if you cannot attend live, the webinar will be archived and available to stream at your convenience), by completing this brief online form.
What is the best way to respond to family members who want you in a facility when you are managing quite well at home? My caretakers, who come to my home 3x/week, are quite capable to dress me, bathe me, toilet me, help me to bed AND they are good companions. I don't have any complaints. I don't rely on my husband for any of these things. So, what should I do when my outside family members (daughter and son) think I have lost control? I may have MS, but MS does not have me!
Rosalind Kalb, Ph.D
Can Do MS Programs Consultant
When other people (even your own children) are trying to tell you what's right for you to do, it's helpful to start by asking them what they're seeing that makes them think you need to make a change. What seems out of control to them? It may be that they see your physical limitations but don't appreciate the ways in which you have taken control of your situation to get the care you need. Or it may be that they're seeing things about your health, well-being or safety that concern them. Hearing their thoughts may bring up issues you hadn't thought about before.
However, if you think that the assistance (and company) you have three times a week is adequate for you, and you feel well cared for, physically safe, and comfortable, then it will be up to you to find ways to help your children understand that. Perhaps your husband could help with that conversation -- sharing his perspective on how you are managing and how the current arrangements are working for you both.
If you are concerned that this conversation might not go well or you feel you might need help to get it started, a family counselor with experience in chronic illness could be of help. Your healthcare provider or the National MS Society (800-344-4867) could help you find a counselor in your area.
Long-term care decisions are very personal and individual, so what works for you may be the same or very different from what would work for another person in a similar situation. The most important thing your children need to understand is that although you appreciate their care and concern, these decisions need to be left to you and your husband. If at some point, the 3x/week arrangement no longer works for you, then you and your husband can begin to think about what other options might work -- and the two of you can choose whether to include your children in those conversations.
I am 67-years-old, and my husband is 74-years-old. I was diagnosed with a mild form of remitting multiple sclerosis in 2010. My husband was diagnosed with Alzheimer’s in 2013 and is an insulin-dependent diabetic II. How do I keep from being over stressed?
Clinical Psychologist Response
Rosalind Kalb, PhD
Can Do MS Programs Consultant
I’m so glad that you’ve reached out to Can Do MS for suggestions. You’re dealing with many different stressors, each of which can be a lot to handle. I think that the key to managing so many complicated issues is to make sure that you’re tapping all the resources that are available to help you; no one should feel that she or he has to do this alone.
I would start by thinking about the things that worry you the most, and tackle them one by one. So, for example, if you have financial concerns, make sure that you reach out to get some expert guidance. The National MS Society offers a free consultation with a financial planner, as well as ongoing assistance with questions/concerns. You can get information about this by calling 1-800-344-4867. If you are concerned about long-term care issues, or how to go about finding long-term care resources should the need arise, now is the time to start talking about your priorities and getting information about the available options – beginning with help in the home and extending to day programs, assisted living, as well as nursing homes. None of us make our best decisions when we’re in a crisis, so talking and planning today helps you feel more prepared and less vulnerable whatever the future brings. These are just two examples, but the point is that one good way to relieve stress is to identify the tools and strategies you can use to address the things that worry your most. Knowing that you have plans and strategies in place, can help you stop ruminating about “What if this happens? What if that happens?”
A second critical strategy is to make sure that you are getting the emotional support you need. Staying connected with family and friends is important. Too often, people tend to withdraw from others and become isolated just at the time when those connections are most important. In addition to maintaining your social support network, you may want to consider talking with a counselor with expertise in health and chronic illness issues. Talking through your concerns, identifying options and strategies, and getting support for yourself can help you feel less stressed and more empowered to deal with whatever occurs. By calling that same number at the National MS Society – 1-800-344-4867 – you can get the names of therapists in your area.
The third important strategy is to make sure you’re paying enough attention to your own health and wellness. When dealing with chronic illnesses of various kinds, it’s very easy to become so focused on the medical issues that you neglect your overall well-being. Taking time to do things you enjoy, attending to your medical and dental preventive care needs, taking care of your spiritual needs, and finding whatever stress management techniques work best for you are all essential components of wellness. If you don’t know what activities best relieve your stress, the therapist can help you identify them – whether it’s time with friends, prayer, meditation, a hobby, journaling, or time in your garden, or something else entirely. Building these activities into your life is like physical therapy for your mind – keeping you calmer and more balanced.
And last but certainly not least, exercise is a wonderful stress management technique that is also good for your emotional well-being, cognitive functioning, and overall health. A physical therapist can help you identify an exercise routine that fits your abilities and limitations – whether it’s walking, swimming, or anything other physical activity that appeals to you.
Taking time to attend to your own health and wellness is essential for relieving stress and will also help you be a more effective care partner for your husband. I wish you the very best.
My husband and I have been married for 23 years, and I seem to have lost the desire to be intimate with him due to loss of sensations from my MS. What options do I have to be a better partner in the area of intimacy?
David Rintell, EdD
Can Do MS Programs Consultant
Thank you so much for bringing this important question to Can Do MS. Please note that this response is a general response relevant to women and men who experience changes in sensation and other areas of sexuality due to their MS. Since this is a public forum, it is not appropriate to give direct, personal advice.
A person with MS who is experiencing changes in sensation and desire for intimacy should begin by letting her partner know that these changes are occurring, and they are often unpredictable. You and your partner can work out a short-hand so you can let him know that "it is not a good time" for intimacy, to avoid unclear expectations. Remind your partner what you can do, which might include cuddling, enjoying activities or movies together, and other ways of feeling close. Intimacy really means closeness and honesty, and you can always be intimate in that way. When you are intimate, let your partner know if his touch is not feeling good for you. It may be what often is pleasurable at times, may be uncomfortable or even painful.
Your second step should be to schedule a meeting with your health care provider. Your HCP can look for biological reasons why you might have a loss of desire, which could include testing for hormone levels, and find out more about the changes in sensation you are experiencing. Your neurologist, urologist, or PCP may be able to offer some insights and perhaps a helpful intervention. Ask for a referral to a mental health professional who works with people experiencing challenges in sex and intimacy.
Third, some things you and your partner can do:
- Desire is always dependent on feelings of closeness, comfort, trust and affection. You and your partner can take more time to express these positive emotions toward each other. Desire sometimes arises from emotional feelings, not just physical feelings.
- Explore the areas where you do have sensation, and see if asking your partner to touch you in the right way in those areas helps you to become aroused and interested. An activity called "Body Mapping" or "Sensate Focus" might help. This activity is done when you and your partner can take time when there is no one else around, and with the agreement not to engage in intercourse as part of the activity. One of you spends time touching different areas of the body, and the partner being touched gives feedback about how the touch feels in that area, and whether the touch should be softer, lighter, harder, etc. Then switch and do the same for your partner.
- Suggest to your partner that when intercourse does not feel like an option, that you cuddle, talk, and enjoy each other's presence. There is no couple who could not use more time cuddling.
- There are some good ways to increase sensation. There are new products which are lubricants which increase sensation. There are even products consisting of two different lubricants, one for each partner. When these lubricants meet, they react to each other and create more sensation for the users. There are many products, and if one doesn't work, it might be worthwhile to try another. One example is K-Y Yours and Mine - http://www.k-y.com/yours-mine-couples-lubricants.Many women and men utilize vibrators which increase sensation. There are many, many choices here. A good, reliable, and discreet source of vibrators are:
- http://www.mypleasure.com - A website which offers products for sale and a great education section, including a section on Sexuality and Disability, offering items for people with limited mobility and ergonomically designed sex toys. The site is very positive, appropriate, and is not porn. They offer $5.00 off for new customers. Enter the code: WELCMYP.
- http://www.goodvibes.com - Another positive sexuality online store, many toys plus much useful information.
- http://www.goaskalice.com - Sponsored by Columbia University, Frank answers about Sex, relationships, nutrition, and health
- Finally, experiment! Find out what else works. Does heat increase sensation? Cold? Does watching a chick flick, a sexy movie, or reading increase your interest and desire? If you find something helpful, use it. If you find something that makes the problem worse, avoid it.
Most people find solutions or work-arounds to sexual problems related to MS. We hope you will too.
For further information about sexuality in MS, download the excellent edition of MS in Focus from the Multiple Sclerosis International Federation, www.msif.org, at http://www.msif.org/about-us/communicating-ms/ms-in-focus-magazine/intimacy-and-sexuality.aspx.
As a support partner, I feel like I am unable to take care of my own needs and find myself too tired to focus on me. I want to be as supportive and available to my husband who has MS, but I sometimes feel jealous that no one is able to take care of me. More importantly, I find that I am unable to focus on myself to take care of my own well-being – physically, emotionally and mentally. What can I do to take control of my own health, while being an effective and caring support partner to my husband?
David Rintell, EdD
Can Do MS Programs Consultant
First, remember that if you do not care for yourself, it is likely that your effectiveness as a support partner will eventually be greatly reduced. If you keep in mind that care of the self and care of your partners are linked in this way, it reduces the competition for the attention of the care provider. Therefore, some focus on your own needs is a necessity and should not be overlooked.Thank you for posing this very important question. Many support partners feel torn between providing care for their partner (or family member) and looking after their own needs. And as you have pointed out, after providing care, a support partner often feels depleted and unable to do something health promoting for himself or herself. Here are some ideas which might be helpful to the many support partners who are wrestling with this dilemma.
Secondly, let’s look at the statement, “No one is able to take care of me.” Part of being an effective support partner is identifying possible sources of support for yourself. The first place to look is your partner, the person for whom you care. Although she or he may not be able to provide physical help, s/he can certainly provide emotional support of some type. Even a “thank you,” or a “how are you doing today?” can provide an emotional boost. We know, however, that people living with MS sometimes need to be very self-focused in order to get through the day, and such may be unaware of your need for emotional support. You can tell your partner or family member that you need recognition, acknowledgement and gratitude. You can ask for it. And, if supportive statements from your partner are rare, make sure to let him or her know how much they are appreciated.
There are other potential sources of nurture and care for support partners, but it does take some effort to locate them. You may start by letting your closest friends or family members know a bit more about your life situation. Yes, they should already know because it is right in front of them, but they do not know what you need unless you tell them. If you tell your close friends and family, it is likely that they will offer help. They will not know what type of help you need. Make a list of tasks that would help you replenish. Each task should take about an hour, and if a friend or family member does the task, it will give you an hour to look after yourself; rest, go to the gym, meet someone for coffee, etc. Make index cards, each with one task. When a friend or family members asks, “Is there anything I can do.” Give them a card. The card might say, “Visit Lois for an hour on Wednesday afternoons, so I can go to Water Aerobics.” It might be, “Take our clothes to the cleaners.” It could say, “Find someone to visit Fred during lunchtime, so you and I could go out to lunch, and I won’t worry about Fred being alone.”
These days, many family members live far away and can’t offer support in person. Write some tasks on your list that can be done from afar: Find resources, call your partner on the phone, pay for a cleaning service or a few hours for an aide. There are many ways that we can support each other from a distance.
Finally, remember that your needs are as important as the needs of the person you support. Perhaps you like to go out to the local coffee shop, but your partner does not like to be seen in public with her walker. It is OK to emphasize that both of your needs have to be addressed. Although your partner or family member has the symptoms of MS, you are both living with all of the challenges caused by MS.