Adult children who are trying to support either a mother or father who is caregiving for the other parent are in a situation which has some unique aspects. They may become upset at the caregiver parent’s actions, but not know what it means or how to help. Sometimes it seems like there are conflicting demands–who needs “more” help–Mum or Dad? If we do what is best for Dad, what happens to Mum? As in many aspects of caregiving, there are no clear answers, but sometimes a path or solutions can be found.
There is often an element of secrecy by the caregiving parent. We often hear from adult children, ” We didn’t know it was this bad.” Sometimes a crisis will trigger their getting involved; it is only then that they find that Dad has been hiding how much help he is giving to Mum, how bad her dementia really is, that she is not sleeping.
Often parents do not want to bother their adult children. Sometimes they have been a very insular couple–even from the children. Sometimes they feel ashamed for their spouse, or embarrassed by the condition. A parent may feel embarrassed because they think they should be able to cope by themselves. They may be afraid of being pressured by their children to move to seniors housing, bring in outside help, or take other action. A caregiving spouse who is overburdened and exhausted, can still want to hang on because they are afraid of being separated and alone.
The “hidden caregiver,” if we can label them this, puts him or herself at risk, and also puts their spouse at risk. The obvious risks are that the dependent parent won’t receive the care or medical attention they need. The more hidden risk is of caregiver burnout, and even more important, the potential for abuse of the other parent.
Helping the parent who is the caregiver is sometimes more difficult than helping the one who needs care.It can entail an effort to shift attention to concentrate on the caregiver when it seems like the crisis is with the other parent. Adult children need to understand what Mum is experiencing. What is it like for her to be on the rollercoaster– one day or hour Dad is his old self, or willing to listen; the next minute he thinks she is his sister or a stranger. What is it like to be in the dining room and have him present well to everybody, then go up to their apartment, and start yelling at her? How does it feel to deal with a disease that shows no bodily signs, which you can’t see? To feel helpless, unsure, and alone?
It is often hard for Mum or Dad to remember, understand or really believe that this behaviour is the result of a disease. It is difficult to grasp that there are changes in the brain occurring. The behaviours and emotions sometimes just do not make sense. When Dad believes that the behaviour is under Mum’s control, it gives him a way to approach it–even if that way is not helpful. This denial is functional in some ways, but also destructive. Yet if Dad accepts that the changes in Mum are the result of disease, then what can he do? How can he “make” her control herself when she can’t? This is where the helplessness comes through, and sometimes why Dad’s seeming aggressive or angry behaviour will escalate.But that is tantamount to trying to help someone who doesn’t understand English by just talking louder. Somehow we tell ourselves if we do more of the same, maybe it will work, because we don’t know what else to do.
Sometimes the best thing to do is just listen, and be empathic. Try to help the “well” parent acknowledge their anger at being abandoned, their helplessness, confusion, and fear. Repeat often and simply information about the disease, as a disease.”Dad’s brain has been damaged. Parts of it are just are not working.” Listening is helping Mum to admit that something is wrong. It may be embarrassing, but the first step in any healing process is to find a way to admit there is a problem.
It is easy for adult children to want to jump in and do something in a crisis. It is also easy to judge.It is helpful to remember that Dad’s anger and frustration is often helplessness,burnout and grief. Adult children also need to listen to their own inner self–resentments, fears, frustrations, and grief. By having a handle on this, they will be less likely to project or displace their own thoughts and feelings onto a caregiving parent.
Case History: Mrs. D
Mrs. D’s children asked us to see her because she was having trouble coping with her husband’s increasingly difficult behaviour, due to progressing dementia.
It didn’t take Mrs. D., 80, much encouragement to tell us about how difficult her 89 year old husband was. And she had a lot to tell. We listened patiently for as long as she wanted to talk. Then we said, “It sounds really painful to you.” That helped her to acknowledge why she was angry, and helped to reframe her frustration in a way that was both true, and made sense to her. Little by little, we talked with her about what it is like to live with someone going through these changes, all the while helping her to maintain her dignity.
We also helped her build on what she had learned–sometimes she left the living room for a minute, sometimes she changed the subject, sometimes reasoning worked. We let her know that she was learning and developing the skills to handle the situation–and that with a rollercoaster, sometimes you are up, and sometimes you are down.
We explained burnout, and we explained brain changes that occur in dementia. We asked if anyone else she knew is going through this, and she remembered another woman in her building who was.
Towards the end of our interview, we began to introduce the idea of concrete steps she and the family could take. The key is that these came after we dealt with the emotional processes.Together, they are subjects which often need to be gone through several times over several visits.
On leaving, we agreed to come back, to see if we could do more problem solving with her. It didn’t matter that the most important thing was the empathy and emotional support–problem solving made her feel that seeing us is acceptable.
Helping the Helper
- Learn the signs of burnout.
- Use accurate empathy to help someone express what they are feeling.
- Bring in literature which normalized the behaviour or condition or find a video you can watch together.
- Have the doctor or a counsellor or Care Manager sit down with a caregiving parent.
- Organize the family so that there is apart time apart parents.
- Hire a Home Care Worker to allow caregiver time away without feeling guilty.
- Help the caregiver develop concrete skills for the situation.
- Help caregiver learn stress management skills for themselves.
And always: Ask what they would like to do, or what would help them.