As we came into the building, we saw them standing at the elevator. She turned to her husband and starting yelling, “No, you press the up button! I explained that to you a million times.” She slammed the button and turned away from him. Her shoulders began to shake, her hands went to her face, and she started to cry. Everything showed in that minute–grief, loss, abuse, burnout, and the pain of loving someone who is slipping away.
We often talk about caregivers as a group, but there are many different kinds of caregivers, in different situations. This month, Elder Voice focuses on spouses and caregiving.
Unique to spousal caregivers is the loss of a primary partnership relationship. All family caregivers lose a relationship, but not necessarily that of partner. Becoming a caregiver to a spouse is as though the partnership were dissolving slowly, as though the person on whom you depended is no longer able to maintain their “share” of the partnership. It can be frightening, upsetting, and sometimes overwhelming to have to learn or start to do tasks such as the cooking or household finances that your spouse used to do. Even doing the smaller chores –vacuuming or taking out the trash– can feel like a poke in the heart, reminding you that your partner is no longer able to carry their weight as part of your team.
Often when one half of a couple becomes impaired, the social life of the couple will fall away. It may have been his wife who arranged their social schedule; he may not be comfortable doing it on his own. He may avoid situations that could cause embarrassment, either for himself or her. He may not have the time or be too drained from caregiving to socialize. He may feel guilty going out on his own. If the onset is gradual, he may not even realize that he has withdrawn, or how much he has given up.
When a spouse is “losing” their partner it is what we call “ambiguous loss.” The person is still there, but at the same time they are gone. We will often hear someone say, “she is not the same person.” This makes grief and resolution difficult–how do you grieve for someone who is there, and yet who isn’t? People need to purposely work out what the new reality and form of their relationship means to them, and how to replace elsewhere in their life the parts that they have lost.
At a deeper level the loss is about a shift in primary attachment. That means her husband can no longer meet her emotional needs the way he used to. Even his decreasing ability to do those small tasks impairs the emotional bond. There is emotional meaning in those little things, at some level they represent to her,” I am taking care of you.” As he becomes more impaired it says to her, “you can no longer depend on me emotionally.”
It is very natural for the able partner to feel cheated or abandoned; that “this is not fair,” or “you have left me and I am alone.” She knows the feelings and thoughts are not rational, but still, they come up. It is even common for someone to think, “I wish this were over.” It doesn’t mean she doesn’t love him anymore, but the love gets buried by the intensity of the other feelings. What the feelings tell her is that she is becoming overwhelmed by the exhaustion, the loss, the pressure of a responsibility that is 24/7, and the suffering of her husband.
As most people do not talk about these feelings and thoughts they don’t realize how very normal and common to caregivers they are. Instead they feel guilt or shame. Men especially may feel it shows a weakness or be embarrassed, and will not share what they in their mind with anyone.
Of all these possible feelings, anger may be the most difficult and sometimes frightening for people to experience because it is unexpected, out of character, and socially unacceptable. We are not supposed to feel angry at someone who is sick, vulnerable or unable to help themselves. But similar to the other feelings, experiencing anger is normal. It is half of the fight/flight response that arises when we feel fear or threat–it is self protective.
Caregiving shifts family systems, not just individuals. Spouses should be aware of how their caregiving situation impacts their children, even if the children are adults. It is important for the topic to be discussed openly between everyone who is affected. It will help take off the pressure, and help to find solutions. It will make the caregiver feel less alone.
Sometimes we describe caregiving as “chasing the dragon,” it is an emotional and practical roller coaster. Sometimes it can be very rewarding and bring a closeness to relationships that was never there before ( see our December, 2009 Elder Voice). Sometimes it can be overwhelming. Caregiving spouses need to understand that the feelings and thoughts they have are the body’s and mind’s way of helping to cope. The key to managing these feelings is to recognize that you are only human and to seek and accept help with the emotional and day to day process. When you do not feel so overwhelmed, you will be better able to plan and problem solve to find the best life possible for yourself and your spouse.
Eleven Tips for Caregiving Spouses
Care for the caregiver is a common theme but always bears repeating. The more you care for yourself, the easier caregiving will be and the more you will stay connected to the love and caring that you have for your spouse and the best parts of you. Below are some suggestions for “successful caregiving.” After you read them, make sure you also read our May, 2015 Elder Voice, “Caregivers As CEOs: Ten Tips From the Boardroom.”
- Go to a support group. It will help you to hear how other people are coping. It will decrease the sense of isolation, and help with problem solving. People often make good friends and enjoy the time.
- Learn deep breathing and relaxation techniques. (See our January, 2015 newsletter) These skills are invaluable in helping you cope with stress.
- Learn to accept all of the feelings you have, and try to let go of any self judgment about those feelings. Remember you can feel both frustration and love with someone.
- Hire home help to give you a break from the difficult aspects of the caregiver role and the time to deal with your own life.
- Exercise. Aerobic exercise helps to release the natural endorphins in the brain that make us feel good.
- Allow people to help. They want to. Write down who might be able to participate in a care circle. Not everyone will be there every day, but many people will be available at some level.
- Make sure to keep up with social interaction. In fact, include personal social interaction in your daily or weekly schedule first before planning for the needs of your spouse.That will ensure that you take the time.
- Learn everything you can about the systems and supports that are available in your community both through the government and non profit organizations.
- Learn to be an advocate, and a fearless one. In times of limited resources, you may need to fight to get the help you need.
- Plan for the future so that caregiving does not feel like such a roller coaster.You will feel more in control when you have a better sense of what your future options might be.
- Find a professional counsellor, to whom you can talk in an atmosphere which you know is non judgmental
Diamond Geriatrics provides skilled, trained, professional counselling to help you and your family find solutions to issues in caregiving and talk over the what makes it difficult, and how it is impacting on you. Call us today at 604-874-7764 to make an appointment. We are often covered by extended health, Veterans Canada, and our services are tax deductible.