Relationships – “Until Transplant Do Us Part”

It can be extremely difficult to be a wife or a husband and be a caregiver at the same time. As a caregiver, you may have to do things to help your spouse that you wouldn’t have expected when getting married. You may have to be the “boss,” the “secretary,” the “nurse,” or the “therapist,” all things you may not have signed up for when getting married. Being a caregiver takes a patient, compassionate person, so many people gladly take on the responsibility to help their spouse if needed, but that does not mean it is an easy role to play. There are many responsibilities for caregivers, pre and post-transplant. For instance, a caregiver may assist in managing their spouse’s medication, either by driving to pick up medication at the pharmacy, organizing it for daily use, paying co-pays, or even encouraging their spouse to take the medication if their spouse does not want to. Just assisting with medication management can be time-consuming, physically and mentally exhausting, and costly. Using the example of medication management the spouse may feel resentful for having to do so many seemingly simple things for their spouse and the caregiver may become exhausted from doing these tasks daily, and it may become difficult for the caregiver to look at their spouse as their spouse and not a patient. Identify what you can and can’t do for your spouse. If you are working and providing care to your spouse then there may be some caregiving responsibilities you may not be able to do while you are at work. For instance, it may not be helpful to agree to provide emotional support to your spouse at any time they need because that may not be possible for you during work hours. Also, you may not want to agree to call your spouse every 4 hours to remind him/her to take anti-rejection medication because that would interfere with your work schedule. In addition to interfering with your work schedule, it may be interfering with your “time-off” from caregiving which is very important to maintain positive mental health. It is important to discuss these limitations with your spouse so they can understand why it is important for you, and also what other options there are for care since you are unable to help at certain times. Some suggestions may be a visiting nurse to administer medication if needed or just a simple alarm clock that goes off every four hours to remind your spouse it is time to take their medication. Identify what caregiving responsibilities are bothering you or causing you distress. This is important because you may be providing some care to your spouse that you dislike doing and the dislike could cause resentment towards your spouse which can detriment your spousal relationship. One example may be that you are providing emotional support to your spouse because he/she is anxious about dying. If you are providing this emotional support many times throughout the day, and the anxiety symptoms are not going away or your spouse becomes agitated when you unavailable to provide support, then the support may actually need to come from a professional at a scheduled time because it could eventually cause to distress. It can be very emotionally draining to provide emotional support to another person, so it may be best to identify this as being stressful and identify other avenues for support and care. For this example, the patient/spouse may actually need to speak with a counselor to help with anxiety. It is ok to say “no” if you can’t provide specific care, but discuss this with the patient and transplant social worker to identify other support systems or resources. Make a daily/weekly/monthly care plan. This may seem like too much work, especially if it is done on a daily basis. It may not need to be done daily, the plan of care of care will be determines by the needs of the patient. A “care plan” can be very helpful because it has in writing everything that needs to be done or is scheduled for that day, week, or month. This can be especially helpful to the caregiver because it will allow the caregiver to see in writing what is upcoming, what tasks needs to be changed, what day seems the most overwhelming and requires outside assistance, and what days or times can be designated for “you time” and “relationship time.” it is always important to have “you time,” and sometimes having it actually scheduled may make you more likely to take that time for yourself. Having past “care plans” may also be helpful to you are able to see and look back on what tasks seemed impossible for you to complete and what tasks made you feel the most overwhelmed or exhausted. Documenting this information is great for tracking and can help the spousal relationship in many ways. Take time for yourself. “You time” is incredibly important for all caregivers because caregivers are many time more likely to neglect their own needs which could lead to physical and mental health issues. When you are able to have time for yourself you may be healthier and happier. As mentioned above, actually having “you time” scheduled may be what helps you stick to that time. It is difficult to play the role of a wife or a husband if you are unhappy with yourself and your life. If you are a caregiver only, and give yourself no time for anything else, you may be more likely to become depressed due to feelings of loss of self or feelings of being alone or hopeless. If you forget what you love about your life and what makes you happy, you may be more likely to become depressed. This is significant for a healthy marriage/relationship because resent can become a common feeling when caregiving becomes the only role the spouse holds. Actually scheduling time each day or each week may enforce you to actually take the time, that way you cannot argue you don’t have time, because it is already in your schedule. Even if each day you only take an hour to do something you enjoy, such as exercise, visiting a friend, watching your favorite television show uninterrupted, or playing with your children. Time to yourself is imperative to maintain a good mood as well as to uphold your relationship with your spouse.  Take “couple time.” This is just as important as the above suggestions, if not more important. If you are a caregiver to your spouse and you no longer do things together as a couple, it may become difficult to look at one another as significant others. The caregiver may only be seen as the “nurse” and the spouse may only be seen as the “patient.” When you no longer see each other as a significant other than what type of relationship do you have?  It is important to maintain the “spark” in your relationship. Taking “couple time” or doing “couple things” like going on a date to the movies, going to dinner, or taking a walk together, allows you time away from that “nurse/patient” relationship. During this time you may not want to discuss care issues or anything having to do with transplant or caregiving, because this time should be devoted to your relationship. “Couple time” can be easily scheduled in your “care plan” so you can’t make an excuse to miss. Ask for help. Do not hesitate to ever get extra help if you need. Extra help can vary from counseling to in-home aids or respite care. If you feel your relationship is not working out, or the above suggestions have not been helpful, you may want to consider counseling if you need extra emotional support. Your spouse (patient) may need counseling as well if they need support. If you are both dealing fine with your own issues but aren’t dealing well with issues together than you may want to consider couples counseling.  Other options for extra help can include respite care if the caregiver needs a break. It is ok to need or want a break, just like a job sometimes you need sick days or vacation days for yourself. In-home aids or visiting nurses are also available for daily support if your spouse has a need and you need a break. Do not hesitate to talk to the transplant social worker to go over some of the issues you are having at home with care, and what options are available for your spouse to alleviate some of those care responsibilities.

1. Identify what you can and can’t do – some things you physically cannot do due to scheduling, distance, or money so identify those things and talk to the patient about it ahead of time. Seek assistance from transplant social worker for other support.
2. Identify what responsibilities cause you distress – what things do you resent doing or cause you stress, discuss that with the patient and work with the transplant social worker for additional support.
3. Make a care plan – plan out your caregiving schedule. This will allow you time to schedule your own life events and give you an idea of what days or months are too overwhelming for you to handle alone.
4. Take time to yourself – always take time away from caregiving to do things you enjoy, this will help preserve your emotional and mental health.
5. Take time together – take time with the patient separate from caregiving. This will help you remember why you love the person and why you chose to provide them care.
6. Get extra help – sometimes you cannot do everything on your own, don’t hesitate to ask for help from the transplant social worker, transplant team, or individual counseling for yourself.

Being a parent may actually seem exactly the same as being a caregiver. The parent and caregiver roles are quite similar when the child is young between infancy and small child, however, some of those responsibilities typically lessen as the child grows. How do you cope when those responsibilities do not lessen and you find yourself the caregiver when the child is older? Even when the child is young, as a transplant caregiver you may actually take on more responsibility in addition to the typical responsibility of having a young child. Some challenges you may face are physical and emotional demands related to transportation to and from hospitals and doctors, financial issues related to co-pays for medication and medical care, reducing work hours partially or completely, spousal issues, or your own depression or your child’s depression. The above suggestions can be used when providing transplant-related care to a child as it related to the caregiver’s relationship with their child. Some additional issues may arise, though that are not discussed above. For instance, your child is in need of a kidney and is on the waiting list. While they wait they must receive dialysis, which can be very demanding and difficult for children. Regardless of how long they wait for their kidney, whether it be one week or 2 months, your child wants to be a “regular child” while they wait, and go play with other children or do typical things for their age. Some parents/caregivers have a difficult time allowing their child to be a “typical child” because they could get hurt which could be life-threatening, or detriment their ability to get their kidney, etc. How does the parent then separate themselves from the caregiver role to allow their child to feel normal?  This can be extremely difficult because many times parents take on the protective stance to avoid further medical illness or emergency. One of the last things you want is your child to be depressed and have no quality of life because they are unable to do the things they enjoy doing. Always talk to your child’s transplant medical team to identify which activities are unsafe and what activities are fine. Don’t forget to include your child in those conversations if they are age-appropriate so that they feel included and even have some authority over their life and body. It can be extremely beneficial and empowering for a child if they are able to talk to their medical team on their own behalf and feel included in the medical decisions that are made. Don’t forget to talk to your child on your own as well, let them know you care about how they feel and you want them to be happy during the difficult time of transplant. It is important to remember to schedule time with your child, as you don’t want your child to forget you are also their parent and sometimes you need time to act that way. Scheduling time together to do fun activities is a great way to remind each other that you are a parent and they are your child. Additionally, children may have more of a difficult time dealing with medical issues than adults because their coping skills may not be fully developed. Therefore, if your child appears depressed or withdrawn it may be helpful for them to speak with a counselor. Counseling for the caregiver/parent may also be helpful, as it can be difficult to watch a child go through such hard times physically and emotionally. Transplant is not something a person is taught how to cope with as a child, so even as adults it can be difficult to go through this issue. The physical and financial demands of caring for a child who requires a transplant can be overwhelming, talk to your family and transplant social worker to identify other avenues for support and resources. Many times there is an abundance of assistance available that are unknown to most people.

1. Identify what you can and can’t do – some things you physically cannot do due to scheduling, distance, or money so identify those things and talk to the patient about it ahead of time. Seek assistance from transplant social worker for other support.
2. Identify what responsibilities cause you distress – what things do you resent doing or cause you stress, discuss that with the patient and work with the transplant social worker for additional support.
3. Make a care plan – plan out your caregiving schedule. This will allow you time to schedule your own life events and give you an idea of what days or months are too overwhelming for you to handle alone.
4. Take time to yourself – always take time away from caregiving to do things you enjoy, this will help preserve your emotional and mental health.
5. Take time together – take time with the patient separate from caregiving. This will help you remember why you love the person and why you chose to provide them care.
6. Get extra help – sometimes you cannot do everything on your own, don’t hesitate to ask for help from the transplant social worker, transplant team, or individual counseling for yourself.

Providing care to a parent in their time of need seems like the right thing to do as a son or a daughter.  Sometimes location or financial issues does not actually allow for children to care for their parents. Caring for a parent as an adult child can be extremely difficult because many people find themselves sandwiched between two generations; caring for their own children and caring for their parents. In the Pennsylvania region, United Network for Organ Sharing (UNOS) states that in the Pennsylvania region in 2010 about 17 percent of transplants were to individuals over the age of 65 and 42% of individuals transplanted were between the ages of 50-65. Both of those age groups could have children old enough to care for them if needed. These percentages do not take into account those who were waiting for a transplant and may have required a caregiver as well. How do you balance your own family needs with your responsibilities of caring for a parent? It can be tough; especially when your parent may have more than one need, which are many times also typical of aging, such as; transportation, financial issues due to being retired, cognitive issues, or mobility issues. Transplant hospitals may not transplant an individual if they are unable to care for themselves post-transplant, however that does not mean that they won’t require care from their son or daughter down the line. For instance, transportation could be an issue because they may no longer drive. They may be an eligible transplant patient because they have family who can transport to and from appointments or to the pharmacy for medication. Or the transplant patient was eligible when they received the transplant because there were no cognitive issues, but a few years after they received a transplant the patient is beginning to become forgetful with their anti-rejection medication and you become responsible as their child to provide some assistance. As the caregiver you may not need to physically give your parent the medication they need to take, but you may need to assist in purchasing equipment to assist with reminders for medication or assist finding and paying for an aid or a visiting nurse to assist your parent with their medication needs. One issue when caring for a parent, that may be different in other caregiver situations, is parents may be more reluctant to allow their children to care for them or may be more reluctant to ask for help because the role reversal may be too upsetting.  It can be very frustrating for both the parent and the child in this situation, especially if the parent fights against help. Possibly the best way to work with your parent is to attempt to work together rather than against one another.  An example of working against one another is to tell the parent what they should and shouldn’t do as it relates to transplant, such as when to take their medicine, how to get to and from appointments, or the best foods to eat. Instead of telling them when or how to do these things, it may be best to come up with solutions together for the best ways on how to address those daily activities of life. If the parent/patient says they have an appointment on Saturday, instead of you responding, “I will pick you up 3 please make sure you are ready” you can respond, “what time do you think is best for me to come get you?” and allow for the patient’s input. This also allows the patient to keep a sense of authority over their life and not feel as though they are no longer the parent. If you feel what you are doing is not helpful or is causing you stress, talk to the transplant social worker for additional resources or support.  The US State Department suggests a few different things for communication and addressing issues with elderly parents. They suggest being honest and sharing your own feelings, helping the parent retain whatever self-control possible, they encourage the smallest change possible, making changes slowly, educating yourself on legal, financial, and medical problems of your parents, and respecting your own needs (which is a rule for caregivers of all people). Through this advice, it may make caring for a parent somewhat easier. Do not hesitate to ask for help from the transplant social worker or medical team if there are issues you are unable to handle on your own.

When caring for any person it can be tough to maintain boundaries and preserve relationships. Some of the tips and support above may be helpful with maintaining that relationship so you do not just become a caregiver and the other person just a patient. The relationship shared by you and the other person before transplant and caregiving became part of the relationship is most likely one of the reasons you chose to become their caregiver, thus it is important to uphold that relationship as best as possible. For questions or suggestions please email CaregiverLifeline@GiftofLifeFamilyHouse.org, or speak with the transplant social worker.