One of the most common problems we hear about from caregivers is that their loved one, often parents, will not accept any outside help, despite the fact that they are clearly having trouble with personal care or household tasks, are sick or frail and possibly at risk, or lonely. They may not be willing to see a doctor, buy new clothes, or otherwise care for themselves. This month Elder Voice focuses on how to move past the refusal.
Before trying to initiate care it is important to be aware of your emotions as your parent or spouse become frail. These often include anxiety, frustration, grief or helplessness.They will impact on how you will approach and interact with the person you are caring for. For example, if your father refuses to accept outside help, you might take on more and more of the tasks because you are afraid of what will happen if you don’t. The result is he does not have to make any changes or accept someone else because his needs are met by you. There is also sometimes what is called secondary gain in this situation–he then has more time and attention from from you. If he were to accept help, he may think they would not see you as often. It may only be if you back off and there is a gap in his needs that he will accept help.
It is important to try to understand the emotions underneath a loved one’s refusal. For a woman taking care of her husband or home, accepting help is taking away her role, and may make her feel useless or like a failure. Sometimes people are ashamed to accept help because it is an indication to them that they are not competent or even that they are getting old. The help may be in the form of accepting a caregiver or it could just as easily be accepting a walker. A person may not like the idea that there is someone in their home, or may think that they have to be the host or entertain that person. It is also a loss of privacy. Sometimes people are afraid that accepting help is the first step in being forced to move to seniors housing. Another factor which comes into play is fear of running out of money. People growing up in the time of the depression often learned early to be very careful with money. Spending on a homemaker may seem frivolous and frightening, even if they have the funds to do so. It is hard for them to start spending on themselves after a lifetime of being careful.
Spend some time talking with your parents about what lies behind their objection to accepting help. What looks to you like stubbornness may be fear or shame. Listen to their fears and what things mean from their point of view, and accept that these are real to them. They may be able to admit or acknowledge to difficulties, but see them differently than you do.This does not mean you have to accept not bringing in some support, but they will then know you are listening and not trying to force something on them. Try not to get into a standoff where pride or fear or ego derails a discussion. Rather, see if you can engage together to identify needs, problems, and solutions that will make them feel comfortable and have their pride and dignity intact. What would make them comfortable? What do they see? Do they understand what effort or time it takes from you?
There are times when people are unable to understand or remember that they need help. It may be that dementia has affected that part of their brain that manages judgment and insight (the abilities called ” executive function,” found mostly in the frontal lobe area of the brain). So it may be that whereas they appear stubborn, it is actually brain damage, a disability just as real as a fractured hip. Trying to explain why they need help may not work no matter how often you try.
Sometimes people who are cognitively impaired just seem to reflexively say no to something, perhaps because it is safer and less threatening. If you ask them if they want or will accept something, their standard answer is no. If this is happening, instead of asking, you can just say, “we are going to…” and many times someone will participate.
Caregiving is like a dance. Sometimes you lead, sometimes you follow. Sometimes you push, sometimes you back off. It may take some time and you may need to develop some boundaries that you both agree on before you get some help. It is an idea people have to get used to and feel comfortable with. Sometimes you may have to stand back, rethink, and take a totally different approach.
If they do not understand, and they really are at risk, then at some point, you may have to make a decision and tell your parent or spouse that someone is coming in or you will be doing something. This is where adult children often get stuck.
Imposing limits or structures on a parent or spouse can be frightening and difficult, even more so when they get angry with you and start calling you names or fighting with you. It can be especially hard if you have to lie, for instance you tell your parent who is worried about cost that the caregiver is paid for by the government. These are situations which most people are not used to being in with their parents. While we think the expression “parenting your parent,” can be demeaning, it can help you to see that you need to shift your role–from the child who does not question what their parent says to the caregiver who is, in some ways, in charge.
Even though they may protest, after a while your parent or spouse may easily come to accept and depend on the caregiver. Two weeks after we started a caregiver for one of our clients who adamantly refused help from anyone, she started calling the caregiver at home on her day off and asking her to come to see her. You might start off slowly, once or twice a week for a few hours, and gradually build it up.The first few times you may want to be present. You may ask a caregiver to only do activities which your loved on enjoys– at first don’t help with bathing, just play cards. Or just do laundry and chat.
Despite the fact that someone’s insight and judgment may be impaired, if something is presented in a way which is not threatening to them or makes sense in their world, they may be more comfortable with it. For instance, instead of introducing home help, introduce a friend who would like someone to go shopping with. Or instead of trying to get someone to take medications, maybe they will take “vitamins.”
Which person who tells a parent or spouse that they need help is sometimes as important as what they are told. Family members have often used us or the doctor to tell a parent something they do not want to hear, so that we or the doctor are the “bad guy.” Parents also may listen to an authority more easily than to someone whose diapers they changed. Sometimes they will listen to one child more than the other, or will listen if all of the children sit down at once with them.
Approaches to bathing, recreation, outings, or doctor’s appointments may have to be done in steps, and with no warning. If someone is afraid to see the doctor, then you might just go for a drive. You might just bring the car around and tell your Dad you are going out for lunch, rather than asking if he wants to go. Often this kind of approach is quite successful in helping people expand their lives and activities and then they start looking forward to them. They will enjoy or be willing to do something which they would have refused if you asked them directly.
A variation on the above is to give someone limited choices. Do you want to go now or this afternoon? Would you prefer white or green? When the cleaner comes do you want him to start with the dining room or the kitchen?
Initiating a move to seniors housing or a nursing home may also require a family member to make the final decision. Generally we remind people to help a loved one through a transition by allowing them to take ownership and the lead in making the decision. However, if someone is cognitively impaired to the point they are no longer safe in their home and they do not have the capacity to make decisions, then sometimes just telling them they are going to move that same day or just a couple days in advance may be the best approach. You may even have to have an excuse–“the house needs repairs” or “the doctor says you are too sick to stay at home for now,” and let that be the first step in a process. Remember that in order to make these kinds of decisions, you may have to have a medical power of attorney, Representation Agreement, court order to become a committee, or something similar.
The kind of issues discussed here are the ones that, once again, lead us to remind you that you may benefit from an outside ear. Support groups are frequently the best place for caregivers to find support and solutions to caregiving dilemmas. You do not have to reinvent the wheel–other people have been through what you are going through. Professional Care Managers from Diamond Geriatrics also help family members and caregivers to find solutions. It is important for you to remember caregiving is an ongoing process that is like a job, in that there are tasks to be accomplished that require tools and creative, compassionate solutions. Do not give up. Be creative. Be persistent. Ask for help.
