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  The Alpha-1 Patients and Family Any serious illness changes the entire dynamics of a relationship. As part of a couple, you took vows to stay together “in sickness and in health.” The strain and struggles of an extended illness can bring a couple closer together or breakdown, even the strongest marriage. If partners do not change to meet new needs, the marriage may end. Five percent of all marriages end in divorce post-transplant. If you do not have someone who can serve as the primary caregiver, who can nurse you 24 hours a day and seven days a week while you are waiting for a transplant and through the recovery, you may not be listed. You will want someone to be able to talk too who will listen to your heart and support you no matter what. There may be periods during the process in which you feel denial and depression or become quite obstinate and argue over anything. Therefore, it is important to have someone to lean on and help you not only physically but also emotionally and mentally. The patient's usually takes out frustrations out on the most accessible person, the spouse and caregiver. Both patient and caregiver should invest some time in their own support groups, so as not to put the burden on one another. In a marriage, there can be a kind of role reversal when chronic illness enters the relationship if the male works outside of the home and the wife stays home. However, today in most households both work outside of the home. Therefore, adjustments will have to be made work schedules, household chores and the raising of children if they are in the home. This is a time when the couple really needs to listen to each other and not take things for granted. I encourage people to talk about what they think is going on, and not expect the other person to read their mind, but to say what is on their mind. You should not be afraid to ask for what you need emotionally. Both caregivers and patients sometimes need to say, “I need a hug,” or “I need a back rub,” or “I need an evening off.” There are couples that stay together during the illness and transplant, only to separate after the recipient has healed. It seems that once the danger is over it is okay to leave. This can happen in particular when the couple's relationship was having marital problems before the diagnosis and/or transplant. However, in a good relationship a chronic illness can make it even better. The strain, of a serious illness, such as Alpha 1 with the possibility of a need for a transplant can keep a couple in touch with the amount of time one has with another and that the quality time should be there all the time. The marriage can become stronger by watching each other deal with the illness. Whether, it is the patient's shortcomings and reactions to the illness, or their honesty in expressing their fears and misgivings about the outcome. On the other hand, the caregiver's willingness to accept love and help from family and friends shows strength rather than allowing themselves to become overwhelmed. The experiences for both can make each appreciate life more and realize how precious it is. I am including the following list taken from the book “Organ Transplants” by Robert Finn as suggestions for couples to keep their relationship strong throughout the transplant process.
Be open with partner about your feelings. Do not expect your partner to be a mind reader. Tell them what you need. Pay close attention to your partner's feelings. Keep your eyes on the prize; a successful transplant and recovery. Whether you are the patient or the caregiver, expect to feel anger, impatience, resentment, and other unpleasant emotions occasionally. This does not make you a bad person. In the face of such emotions from your partner, be understanding. Recognize that these emotions may be side effects of the medications or the disease process or the strains on the caregiver. If you are the primary caregiver, take frequent breaks. Find an alternate caregiver so you can take evenings or entire days off occasionally. Find things about your partner to admire as he or she copes with this adversity. Recognize that once the patient has recovered, family members may experience a flood of uncomfortable emotions that had previously been held in check. This is normal. Whether you are a transplant patient or family member, do not be afraid to seek outside support. Sometimes problems appear after the crisis is over. While awaiting the transplant the caregiver and family are in what I call crisis mode, and they do what needs to be done at the time. Occasionally, a family member might breakdown once the recipient is doing fine, begin crying or think they are losing it. This is normal reaction because now they can release the anger and resentment they felt but were unable to express because it is not always acceptable to voice those feelings for the burden they bear in taking care of someone even though they love them. The recipient of the transplant may not realize that their partner has gone through many changes too. He or she has been living on the edge of profound loss for a long time. The partner has probably shut down any thoughts of his or her own needs, including the sexual ones. His or her patience with the ill partner has even surprised her or him. Sometimes the partners caregiver can feel shut out and alone much of the time. Therefore, someone who has been shut out cannot just reopen like a morning flower once the crisis has passed. It will take some time and some work to adjust to a new, altogether different marital state. A lot of talking is necessary, and so is consultation with a professional. Disclaimer: The information presented on Ask Pat is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.
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