Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared

Rajesh is a management consultant living in Bangalore. His wife’s mother started showing dementia symptoms around 13 years ago and was diagnosed 10 years ago. Rajesh’s wife, the primary caregiver, got increasingly pulled into the care work. In this candid write-up, Rajesh shares how he failed to support his wife in the beginning. Based on his experience, he shares tips on how close family members can support primary caregivers. [note]

Rajesh writes:

This note is intended for family members close to the main caregiver, such as the caregiver’s spouse, siblings, and children.

My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.

Briefly,

• I did not try to learn about dementia or its caregiving after the diagnosis. I had no idea of what to expect. I think I expected no impact.
• I underestimated the amount of work my wife was doing. I did not appreciate that she was getting physically and emotionally overwhelmed. I thought she was “negative” when she looked worried. I also thought she was overreacting when she asked me to reduce travel overseas because she would not be able to handle emergencies.
• Most people in India treat dementia patients like they would treat any other elder. Close relatives would tell my mother-in-law to show more “willpower.” They criticized and mocked her for her “dependence” on my wife. They blamed my wife of negligence and ill-treatment based on her mother’s confused statements and their ignorance about dementia. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments. I did not try to explain dementia facts to relatives. My wife was completely isolated by my relatives.

I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.

• As caregiving took up more and more of my wife’s time and energy she had to give up the professional work she loved. She also had to give up her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realize that she needed emotional and functional support, and that she needed breaks from caregiving.
• I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.

My way of looking at things changed once I increased my participation in the care. I found that some situations around care were more stressful than what I faced in my professional life with all its deadlines and deliverables. It was unrealistic to expect the primary caregiver to handle this work alone without family support.

Below are some of my specific experiences and suggestions for people close to the patient and primary caregiver:

Learn about dementia and caregiving.

After my mother-in-law was diagnosed, my wife read up on dementia and caregiving. She pointed me to references. But in my view the doctor had talked of memory loss and I did not need to read more about it. My ignorance affected many of my actions and decisions.

It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.

• When my mother-in-law’s behavior became stranger and embarrassing, I thought of her as “a difficult person to live with”. It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.
• I did not realize that dementia gets worse with time. So I did not plan for the fact that her care would also keep increasing.
• My ignorance also meant that I could no longer talk with my mother-in-law. I began avoiding her because of her “unreasonable” behavior. It was many years before I figured out how to communicate with her.

My suggestion to anyone close to a dementia patient or the primary caregiver is to understand dementia better. Learn how it may be affecting the patient’s behavior. Understand how the problems grow with time, and how the type of care will have to be changed because of this. In the early stages, the patients are physically strong. They are leading active lives and trying to cope with the confusion and other problems but they may hide their problems and resist help. Some may be stubborn or even abusive. Things change a lot with time. Towards the later part, they are usually bedridden and cannot do even the basic tasks for themselves, when they cannot speak, and are sleeping most of the time. There are many books, websites, videos, and other resources for understanding dementia.

You must also learn what caregiving involves. This includes effective ways to communicate, helping with activities, handling odd behavior. You need to understand these to continue to interact with the patient, and to help the primary caregiver.

Tell people around you about dementia and the caregiver’s role

My experience with my relatives showed that people do not believe the caregiver’s explanations about dementia. This is especially true if they think of the caregiver as an “outsider,” like a daughter-in-law from a different community and caste. Because they do not understand the patient’s problems they do not understand that caring for such a person could be different from living with a normal elder.

One example: My mother-in-law was very uncomfortable going out, so my wife reduced her outings to what was really needed so as to reduce stress. My relatives called my wife cruel and said they would not want to be treated like this when they are old. They did not understand that a dementia patient gets stressed if the routine is changed or when there are too many new people and places. They ignored my wife when she tried explain. They assumed she was hiding her neglect and laziness and cruelty.

I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong. I thought we would not need support from others. This cutting off only made things more difficult for my wife.

I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong.

When my mother-in-law was distressed because of what my relatives said to her, I told her to “adjust” and to “ignore” them. Looking back, that was very odd of me. I expected her to be more understanding and adaptable than my relatives who were in good health and fully alert mentally.

We must ensure that persons interacting with patients do not agitate or upset them. Also, make sure that they do not judge and criticize the caregiver because they don’t know enough about the patient’s needs. Visitors should understand that the patient’s complaints may be a result of confusion and delusions.

• Explanations are believed more if given by someone other than the caregivers. When caregivers explain, people think they are making excuses to justify neglect or cruelty.
• Explaining the situation is not easy. You may have to do it differently for each relative or neighbour. Some persons may be willing to read a pamphlet, others may not. Some may be ready to watch a video. Some may respond better to explanations and examples of other patients. Examples could be listing other family members who had behaved strangely and may have had dementia. Or famous persons with dementia.
• You may need to request someone neutral, like a social worker or a specialist, to explain.
• Explanations usually have to be repeated many times before people really understand the situation.

Try to reduce caregiver isolation

Many of us think that when caregivers seem down they are being negative and defeatist and not “pulling themselves together.”

When my wife seemed quiet or looked unhappy, I assumed she was being too emotional. I thought she worried too much and that she was not able to keep things aside and enjoy life. If she tried discussing possible emergencies or problems she faced with the attendant, I dismissed these as minor problems and told her she was being negative. This hurt her deeply because she expected me to understand. As she once said, “If even you do not understand, why would anyone else?”

Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.

Many factors contribute to caregiver isolation. As the patients start needing closer attention, caregivers are more confined to home and also isolated from others. They often have to give up any work or hobbies that require going out of the house or meeting people. They cancel social outings because of last-minute care problems and so people stop inviting them. Criticism, like what my wife faced, makes them withdraw further. Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.

Family and friends close to the caregivers can help reduce this isolation. If they understand how emotionally stressful care is, they can find ways to support the caregivers and reduce stress.

My advice to people is:

• Try to understand how isolated the primary caregiver may be feeling.
• Think of the emotional difficulty of caring for someone who is mentally deteriorating and knowing there is no hope of improvement. Also, there is no way to know how long this care will go on.
• Think of how conflicting it may be for a caregiver to imagine getting “free” of the caregiving role. Sometimes, frustrated because we could not go together for vacations, I would fantasize about the fun my wife and I would have later. I was surprised when my wife didn’t respond with enthusiasm. Later I realized that I was, in effect, asking her to look forward to a time after her mother’s death; thinking like this would make her feel guilty. She would also find it tough to go back and provide compassionate care for her mother without any sense of guilt or resentment.
• When providing support to the caregiver, provide it in a way that suits the caregiver’s personality. Some caregivers like distractions and comic movies, others want appreciation of their work. Many want to be heard when they talk of their problems. They like sincere reassuring statements like “I am here to help in whatever way required”.
• Don’t act preachy, lecture, or provide empty suggestions like “try to lighten up” or “take care of yourself” or “take a break”—-they sound insensitive if they are not practical.
• See how you can to give the caregiver time off breaks where the caregiver can meet people and do enjoyable activities. Most caregivers do not ask for help because they don’t want to be preached to. As someone close to the caregiver, you can notice the stress and offer help.

Consider the primary caregiver’s increasing workload while making choices that affect your availability to support the person.

After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.

My professional work had peaked around at a time my mother-in-law began showing even higher degree of agitation and self-harm. My wife was busy with caregiving work. Because I was over-busy, she also had to manage various home administration tasks. These included bank work, handling my accounts, and even correspondence with tax authorities. I was travelling almost all the time. My wife was left alone to handle situations when my mother-in-law fell ill or when the attendant vanished without notice.

After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.

Dementia goes on for many years. The care needed also keeps increasing. Except in the beginning, it is almost full time work. The primary caregiver cannot do this alone, and others have to get more involved in the care. We also have to arrange for the money needed.

In long-term care facilities attendants work in shifts. There are also support staff and counsellors. The employees get weekly holidays. When the patient is cared for at home, we cannot expect one primary caregiver to do all the work alone, all day and night long, and without any break!

My suggestion is that family members should understand the real care load and plan for changes to their work commitments. This could involve:

• The type of outside work being done, in terms of the time and stress involved. A very stressful job will leave you no time or energy to help the primary caregiver.
• City you are working in, and travel requirements of the job. You cannot give much physical or emotional support if you keep going to other cities for work. If you travel to other countries, it is even lower.
• Flexibility to handle emergencies. Your job may not be flexible enough for you to be available for emergencies. For example, if you need to be present in another city on a particular date, or if you have many difficult deadlines, you cannot help even in emergencies, when your help is critical.

You may have to look at your lifestyle choices also, such as:

• Location of where you stay, the kind of house, privacy, etc. For example, you, the caregiver and the patient may have to move in together or stay close to each other. Any change of residence can severely affect the patient, so you may be the one who moves, not the patient.
• The house may need changes for the safety of the patient and for making care easier. Furniture may need replacement. Rearrangement may be needed so that visitors coming to meet you don’t disturb the patient. You may need to entertain your guests somewhere else if entertaining them at home is inconvenient for the patient. If you use paid help, then you need to consider privacy and how to ensure safety of valuables.

Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls.

• Not all leisure activities will be possible. Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls. You may have to depend on reading books and and taking walks in neighbourhood parks or going for short scenic drives, instead of taking weekend breaks outside the city. Visits to relatives in other cities and countries may be utterly infeasible.

Functional support.

Even if you are not good at emotional support, you can help in many functional areas. Caregiving for a dementia patient is sometimes called a 36-hour job. I think it is more than that, so every bit helps.

Here are some examples of functional support to consider:

• Investigate and evaluate professional caregivers, respite homes, home nursing, as the primary caregiver may not have the time and energy to do this research.
• Set up the home for handling emergencies.
• Arrange doctor visits, lab tests, and getting medical supplies.
• Ensure that the caregiver and the patient have nutritious food.
• Arrange (appropriate) entertainment for the caregiver and patient, to give them a change and a suitable break. Make sure that the break does not create more issues later. For example, the patient may enjoy a visit by relatives, or a visit to the market, but display disturbed behavior after such a visit.
• Provide respite to the caregiver by taking over the patient’s care for some time. To do this you will have to learn caregiving skills, develop rapport with the patient, and earn the caregiver’s confidence that you can do this task.
• Jointly with the caregiver, re-arrange the house. This may require some bigger changes like putting grab rails, replacing furniture, and getting , equipment like hospital bed, blood pressure equipment, wheelchair, etc.
• Take over some of the activities from the primary caregiver. For example, grocery and vegetable shopping, utility payments, house repair, tax returns, investments, bank work, vehicle repair, paperwork like passports, identity papers, driving licenses, etc.

In conclusion:

The primary caregiver invests a large chunk of life to care for the dementia patient. This includes giving up on professional life, leisure, and social life. Savings may get wiped out. While we cannot give them back their life, we can take out the time and energy to help them. Helping them is a meaningful way of using our own time and energy and can also be very fulfilling for us.

Thank you for sharing your experience and listing these useful tips, Rajesh.

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.