We are often contacted by adult children who thought their aging parents were doing well together until a crisis occured. When they looked more closely at the situation they realized “we didn’t know what was going on.” This month Elder Voice focuses on aging couples.
There are two different and challenging pathways that can unfold as couples age together. The first is where one person is still in reasonable health, while the other person becomes increasingly impaired, either physically or cognitively. This requires the healthier person to take on more of the tasks that were previously split or were the domain of the other such as cooking or managing the household finances. If they don’t have the skills required for these tasks, it makes caregiving even more difficult and leaves them exhausted and perhaps even depressed.
The second pathway occurs when both spouses start becoming impaired. In this second scenario we often see one half of the couple who is impaired cognitively and the other physically. Their remaining abilities complement each other so together they are still able to cope. If both individuals have the same deficits that are progressing slowly, they may adjust little by little. They may let tasks such as cleaning, bathing, cooking or shopping slide increasingly as impairment progresses. This puts them at risk for falls, malnourishment, and medication mismanagement.
As things become more difficult the couple may start to withdraw from friends and hide what is happening from their children. This happens for many reasons–they do not want to bother their children. They feel shame and embarrassment that they are not able to cope independently.They are afraid their children will “make” them move to a nursing home. A well spouse may feel that they need to protect the failing spouse and are helping maintain the other’s dignity. They don’t want anyone coming into their home to help. Women especially do not want to lose their responsibilities-such as cooking–as it takes away their “role” in the home and relationship.
When both individuals are becoming cognitively impaired the hiding may not be intentional. They may not realize that they are not effectively coping or withdrawing, so they don’t know when to say something or that they should ask for help.
Whatever the reason is for the withdrawal, the result is the same. The couple erects a wall between themselves and their children/family and the outside world. Even their family doctor may not realize what is happening. When professionals start to ask probing questions to determine health or safety and stability in the home, the couple may give assurances that everything is fine. Oh yes, they will say, I am bathing. I still am cooking. I go out to see my friends. None of those may be true and the truth can be that they are lonely, frightened or exhausted. But from their point of view, they are also keeping themselves and their spouse safe and their pride, dignity, and independence intact.
Adult children are often bewildered when there is one aging parent. It is even more difficult when the parents are still together or have a spouse from a second relationship, because there is a “natural” boundary that is harder to cross. Adult children do not want to insult their parents or seem like they are prying into the relationship .Looking for signs of decline and trying to intervene is the role reversal that adult children talk about and they are not used to doing. All of these may lead them to back away from confronting the concern. Our advice to children when faced with these issues? Ask yourself: What will happen and how will I feel if something goes wrong because I was afraid to ask or act?
There are two steps to dealing with these issues. The first is to find out if there is a problem, and the second is determine how and when to intervene.
Start by paying attention. If you begin to notice a parent having some kind of difficulty, follow it up. If they are having trouble walking, don’t let them tell you it is not important. If you notice dishes not being done or the house is dirty or something else has been sliding, find out why. A change in habits can be the signal that there is a problem.
Take note if they are forgetful, having small car accidents, if there is no food or bad food in the fridge, if the toilet is dirty or the shower/bath looks as it no one is using it regularly, if clothes are torn or smelling. If a parent is on medication, check the bottles every few weeks to make sure they are being taken correctly.
Pay attention to signs that a parent is sleeping a lot, irritable or overly tired. You may notice an increase in friction between them or one of them wanting to spend more time on their own. These are often signs of trouble or of caregiver burnout. Burnout can lead to health problems on the part of the caregiver and can trigger abuse as the caregiver, isolated and with limited resources, tries to cope.
If you do notice something that concerns you, say something! Say it early–when you are first noticing it. Before you do, though, find a way to hold your anxiety or fear apart so that what you say is not experienced as harsh, panicked, or judgmental. You do not want to set up an adversarial situation.
You may have to ask specific and detailed questions. That takes fearlessness. Is Dad forgetting? What kinds of things? How often? What medications is mum on? When was the last time she saw a doctor? Has she had falls? How many? How often? You may need to tell your parent that things are not going to get better, and if a process has started, it is only going to get worse, unless you get them some help.
If you have siblings, one of you may have more influence than the other so they might be the one to approach your parents. It helps if you are in agreement about what is needed. Your parents may listen more to a doctor, financial advisor, or other person on whom they have previously relied. Sometimes it is easier for them to listen to someone whose diapers they have not changed!
In talking to your parents remember that the issues are not just practical but emotional as well, for both of you. For instance, a walker is not just about mobility–for them it is about independence and pride, and for you it is about seeing your parents getting older.
The emotional process is in some ways one of grief and loss. It is a transition in the way your parents see themselves and each other. If they have been very self reliant, they may be afraid of losing each other. They may have to grieve in advance to the loss of the other as they have been, or in the loss of the relationship that they have had. It is important to find out what the real meaning of the resistance to help is and try to work with the emotions behind the wall.
Convincing parents to accept help can be a dance–sometimes you lead, sometimes you follow. They may not accept it at first, but after thinking and talking about it, it may become more acceptable.
When one parent is becoming cognitively impaired from dementia, the other may not understand that there is a disease process occurring. It can be helpful for them to know that the changes or behaviours they see in their partner are symptoms of a disease, not that their spouse is being difficult or trying to make them angry. The acceptance of disease can enable them to accept help.
It may be helpful to talk to each parent individually and see if one is more willing or able to accept help. Privately you may hear something different than what they will say in front of their spouse. There is often one parent who is the “gatekeeper.” When that one accepts the help, the other may follow. If the gatekeeper is the one who needs the help but is denying it, the other one may have to learn to assert him or herself which is often a huge change in the way the couple has related to each other.
Adult children should have an eldercare plan in mind whether a parent is alone or in a relationship. Make sure you know where to go for help and what the options are in case something happens to one of them. If Mum gets sick, who is going to look after Dad who is too forgetful to be on his own? You need to know the answers to this kind of question.
For over eighteen years Diamond Geriatrics counsellors have been helping people like you with eldercare planning and talking with aging parents. We do thorough assessments that gives you a road map so you know where to go, what to do and when to do it. We can work with you, your family, and your parents to begin to go down this road in a way that minimizes stress. We will see you in our offices or go to your parents home if we decide that makes sense.
Are You Prepared When Someone Has to Step In?
Not all adult children have the desire to help their parents. People who have burned out trying to help or who have had years of an abusive relationship may decide that they will not be involved. Sometimes people are not able to; they live too far away, they have their own illnesses, family responsibilities, or they may not have the means.This is a decision that everyone has to make for themselves and sometimes they may need some counselling or support to make their own decision.
For those who do stay involved from either love or a sense of duty or personal values, you must be prepared and able to help. To do this you must know your parents’ financial and medical situations. This means knowing the people who are involved with your parents such as doctor, lawyer, banks, financial advisors. You also must know their illnesses, treatments and medications. It is also essential that you or someone has both the legal ability to make medical and personal care decisions if they are not able to do so. In British Columbia that means your parents need what is called a Representation Agreement. Someone also needs to have power of attorney–the ability to take care of your parents’ finances if they are not able to do so. If these two issues–care and finances– are not clear and spelled out, it can be very costly in a crisis and cause enormous friction between family members.
