When families share caregiving work

[An updated version of this page, with more examples and material, is available at my new site, at this link: Coordinating caregiving between family members The new site also contains an interview that show the sort of problems that occur: Conflicts in the family over dementia care ]

When a parent gets dementia, the family should ideally share the responsibility of looking after the loved one. That’s what families are for, right? To support each other through the difficult times.  But not all families “survive” such shared caregiving…

What needs to be shared and coordinated

Here’s a basic list (for simplicity, I’m assuming the patient is a parent, and the care is to be given by the children)

  • With which child (or in which city/ old age home) will the loved one live?
  • Who will do the caregiving work?
  • Who is responsible for medical and other decisions (such as investment and tax) that need to be taken?
  • Who will bear the expenses?
  • What role will the other children play? What work will they do, how often will they visit, and what are their responsibilities?
  • In case there is a conflict of opinion on medical choices and other choices, who will decide and on what basis?
  • Will the caregiving responsibility be cycled between the children? How often? On what criteria?
  • If caregiving becomes too overwhelming for the caregiver currently handling the work (or if the caregiver falls ill), what is the back-up plan?

Such a discussion can be effective only if the participants are well-informed about dementia and caregiving, and realistic. They need to be honest about what they can or cannot do, and should trust each other.

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Special considerations while caregiving for dementia patients
  • In India, sometimes children adopt a cycle-the-parent approach, where the parent spends some months with one child, and some with another. This may not always work for a dementia patient, who gets disoriented so easily. The act of moving the parent from one house to another may itself be traumatic enough to cause a deterioration.
  • The environment around dementia patients greatly influences how secure and stable they feel, and whether or not they get agitated.  A small apartment may not be the right setting, and sharing a room may not work. If a family has children preparing for an examination, there may be problems. Similarly, if a family often parties at home, or leaves the patient alone, that again may not work. The adjustment the family members will need to make must not be underestimated.
  • Dementia patients may act in ways that family members could consider “embarrassing” or “hurtful”. This may agitate the caregivers, and frustrate them. Best understand the types of possible problems and take responsibilities accordingly.
  • Caregiving for dementia patients is often a very long haul.  This must be remembered while planning the sharing of work.
  • Caregiving for dementia patients is significantly more stressful than caregiving other elders. The caregiver may need help with the work, or breaks from caregiving. This cannot be ignored while planning.
  • Emotional turmoil in the house while caring for a dementia patient is usually common. It affects all persons at home, and ideally, a child who is taking in a parent to look after should be reasonably sure that his/ her spouse and children are supportive, or at least, not against.
  • If there is some critical activity (such as a child preparing for a competitive exam), combining this with caring for a parent may be a problem
  • Similarly, if there is a small baby (who keeps crying), this may be a problem, as the parent may get agitated and unnerved by the noise.
  • Towards the middle stages, when patients are prone to wandering, several precautions may need to be taken. Someone may need to be at home most of the time, or a home-help employed.
  • At later stage, when patients get bedridden, caregiving often involves cleaning at all sorts of odd hours. Incontinence is present and overwhelming. A separate room may become necessary at this stage. A full-time home-help may also be needed, and this person will also need space and facilities. The patient falls ill often. This stage may also drag on for a while.

Of course, all these aspects have solutions, but it is good to be aware of areas that could cause discomfort or need a lot of adjustment, so that everyone involved is aware and comfortable with what needs to be done, and can plan better.

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Things that go wrong, and suggestions regarding them

Most often, family conferences to discuss the sharing of caregiving are not held, or are held hurriedly, when the crisis is already at hand, and there is no time to think through carefully and make required adjustments.

Typically, some child is closer to the ailing parent, or in a better position to help (could be because this section of the family has more time, more money, more skills, more concern, or more flexibility in redefining life to fit caregiving in). The other children are less able to help. As a result, the caregiving tends to go to one child. As time progresses, both parties become unhappy. The caregiver feels taken-for-granted, overwhelmed, exploited and unappreciated, while the other children  feel excluded, dissatisfied with “progress reports” and decisions being taken by the caregiver, and even suspicious.

The caregiving child complains:

  • We are doing all the work>
  • We have had to adjust their lives, careers, relationships
  • The loved-one looked after does not appreciate us
  • The loved-one values the other family members more than he/ she values us
  • The non-caregiver children are critical instead of appreciative of the work we are doing
  • The non-caregiver children are out of touch of the real state of the loved-one and makes impractical suggestions
  • The non-caregiver children are not spending enough time and money
  • The non-caregiver children do not help in chore or take responsibility, and act like guests
  • We cannot get a holiday because the non-caregiver children know too little about the loved-one’s state and will not be able to take care of the loved-one enough to give us respite

The non-caregiving children also have complaints:

  • The caregivers do not keep us informed of the status
  • The caregivers take decisions without consulting us
  • The caregivers exaggerate the illness of the loved-one because the loved-one seems quite okay during visits
  • The caregivers don’t take good care of the loved-one, because the loved-one so often complains when we visit or call
  • The caregivers don’t accept our advice and push us away when we want to help
  • The caregivers use the fact that they are caregivers as some sort of a moral superiority ground; they chose that role, so now why are they being martyrs
  • When we visit, the caregivers don’t let us spend time alone with the loved-one, and object if we want to take the loved-one for outings which the loved-one wanted.
  • The caregiver is always exaggerating the precautions that need to be taken
  • The caregiver is inflating the expenses being incurred
  • The caregiver is making wrong medical/ nursing decisions regarding what should be done; he/ she is inflexible and opinionated

Are you wondering whether it is really this complicated? Surely a family can get together and do what needs to be done – the children are grow up now, right? Not always.

In a worth-reading article, When Elder Care Brings Back Sibling Tensions, (Time.com), Francine Russo describes how she was the “bad sister” when her mother’s health was failing.  She explains how she realized this only at the funeral, and worked hard to repair bridges with her father and sister (who had been there with her mother till the end). As she says,

Eldercare and end-of-life debates often hit families after decades of negotiating nothing more serious than where to spend Thanksgiving. We can be grownups with successful careers and kids of our own, yet all the old stuff ambushes us: sibling rivalry, entrenched roles and resentments, the way our family talked or didn’t talk about important things.

Support groups and bulletin boards abound with stories of people hurt by the behavior of the loved-one/ sibling – some are caregivers who feel the sibling at the distance is not sharing enough of the work, and others are from the sibling-at-the-distance who is very dissatisfied with the care being given by the caregivers to the loved-one.

Here are a few blog entries at caring.com  (link 1, link 2) that show how suspicion and resentment happen between the sibling who is caring and the absent/ occasional-visitor sibling.

When a loved-one has dementia, the problem is compounded because of the strange, inconsistent behavior the loved-one shows:

  • Often, the loved-one acts very affectionate and normal when the visitors come, leaving the visitors to believe they are “normal” and that anything the caregiver says is an exaggeration, if not an outright lie. The caregiver, meanwhile, is extremely bewildered and hurt. more so, because as soon as the guest (the occasionally visiting sibling) leaves, the patient is even more irritated and nasty and uncooperative. This makes the caregiver feel he/ she is unloved and taken-for-granted.
  • Also common is the loved one taking visitors aside and whispering that they are being mistreated (not being given food, being denied use of the bathroom, and such stuff). The visitor, seeing the loved one behaving normally otherwise, and also seeing how hassled and frustrated the caregiver is, assumes that the caregiver is being nasty and cruel when no one is watching.

A dementia patient has a decline in memory, but social skills are not affected till a later stage. As a result, the patient knows what sort of behavior works well with visitors, and exerts himself/ herself to act “normal”. This is very tiring, though, and as soon as the visitor leaves, the patient is absolutely exhausted and extremely difficult to handle. Max Wallack’s article, Alzheimer’s Patients Can Deceive Outsiders with Their Behavior, explains this very well. An excerpt:

One of the hardest things about caring for an Alzheimer’s patient can be the fact that there is frequently a feeling that no one else really knows what the caregiver is going through.

Adding to this frustration, is the ability that many Alzheimer’s patients have to “pull themselves together” and present a seemingly “normal” front to other people, even to their physicians.

If you are a caregiver, you can use this article to understand what is happening, and therefore not feel hurt.  If you are someone who has visited a patient and is surprised to see the person normal (despite all the caregivers keep grumbling about), you can use this to understand why the person seems “normal.” Your visit is tiring the person so much that the people left behind will bear the brunt of it later :( This knowledge may make you more compassionate towards the caregivers.

So, what does all this mean when you have a family member with dementia, and need to coordinate with the family for the care?

Firstly, it means recognizing that coordinating the caregiving effort is not a straightforward task that will happen automatically on the fly. You need to know both what you can do, and what you can’t, and discuss the entire effort with the rest of the family. It is difficult, and requires some patience and compromise, but if the family stays connected, the caregivers will have a backup, and the distant siblings will not feel excluded. The quality of caregiving may improve with diverse input.

An interesting article that discusses how a family needs to get together provide care is available at Alzheimer’s Reading Room: Five Articles to Discuss On Mother’s Day with Family. The author points out that 40 percent of caregivers end up suffering from depression, and that it is possible that the caregiver will become sick physically or emotionally. Families must consider and discuss: Who will step into the vacuum when the current caregiver can no longer take care of the patient?

We in India, despite our close families and social structures, are no different regarding the problems that plague families everywhere when they must share caregiving responsibilities.

The 10/66 qualitative studies report shows what we all know – people are critical of the immediate family when an elder exhibits dementia symptoms. Society is critical. As elsewhere, sibling conflicts happen in such cases. Given out society structure, we can also expect distant aunts and uncles and cousins to add their criticisms, without offering any help. Any objection is “disrespect” and “talking back” and only further isolates the caregiver :(

In my view, here are some things we need to keep in mind as direct caregivers:

  • We must firstly accept that, even if they are not directly caring for the patient, the distant siblings/ relatives feel concerned. We should not doubt their motives – such doubts kill any hope of sharing the tense times that are inevitable in caregiving
  • We should keep them informed, but try not to sound complaining. Definitely, we should not blame them for not being present. if we do, any chance of their helping us later is greatly reduced.
  • We should understand that caregiving becomes increasingly overwhelming as the patient worsens. We will need whatever support we can get from other members of the family. It may not be extensive, but every bit helps.
  • If others are trying to help, we should accept it gracefully. If such help is misguided, and does not take into account the actual condition of the patient, we must discuss and explain, rather than being dismissive of the help or mocking at the ignorance of the would-be helpers.
  • Sometimes, we get habituated to our way of caregiving, and forget that a different perspective may work  better. We need to lighten up a bit, and not be defensive. We should not assume every comment or suggestion is criticism. We should not assume that if some change improves things, it means we were doing mistakes and being silly/ inconsiderate earlier. Caregiving is often full of mistakes, but there are enough things we are doing right, too
  • Not everyone is good at caring for someone who is dependent. If our relatives are not good at that, let us accept it, and look for other areas they can help in. Perhaps we can give them specific tasks in areas they are comfortable. Expecting them to do what we are doing, and getting bitter when they do not, will only stress us further.
  • One major problem is that relatives who live at a distance often don’t fully understand the situation. If they are unsympathetic/ critical/ jumping to conclusions, we can try to inform them of the nature of the disease and the challenges of caregiving by using “neutral” methods, like giving them books/ links to sites, or suggesting they attend some support group meetings. That way, they will not assume we are angling for sympathy and being complainers or martyrs.
  • If the relatives are unable to relate the patient’s complaints or apparent normality with the nature of the disease, we must provide them more focused data on this aspect from authoritative sources.
  • In late-stage dementia, many difficult decisions have to be taken, and the patient cannot take them. Other family members may have opinions on this; we need to take their input and decide jointly, to the extent possible. Tubefeeding, use of antibiotics, whether to go in for aggressive treatment or not, all these become very touchy and contentious issues. Family members may feel strongly about some of these, and consensus will keep the care environment peaceful.
  • Finally, if after all attempts to stay connected with the distant family members, we are unable to, we should not get stressed out about it.  Let’s just focus on what we are doing. We have enough to feel stressed about doing the caregiving job at hand.

As siblings/ other relatives at a distance, we should understand:

  • Caregiving is a very stressful, tough job.  As we cannot actually help in it, we should, at the very least, be supportive of those doing the job.
  • All of us must get a better understanding of dementia and related caregiving. Whether or not we are directly caring for the patient, we must gather this understanding, and even attend support group meetings and visit community sites to get a better idea of what is happening to the patient and what the challenges are.
  • We must understand the environment/ constraints  in which caregiving is being done. This is specially so for family members who are in countries where dementia is well understood and support systems exist; understanding how different the situation is in India is extremely important to appreciate what is going on, and to give meaningful help and suggestions.
  • If the patient complains, or seems normal to us, we must realize this is not necessarily the true situation.
  • If we feel the caregivers are making some mistakes (major or minor), we should give alternate suggestions in a helpful and gentle way, rather than as criticism or fault-finding. At no point should we do anything that makes us sound superior/ better; caregivers are very sensitive and often stressed, and may misunderstand our intentions
  • We should stay in touch with the caregivers, allowing them to talk of what is happening. Sometimes, just being able to talk helps the caregiver.
  • If the caregiver snaps at us, we should take that as a sign of stress, and not get defensive or upset. Let us treat that snapping as a “call for help”.
  • We should consider what type of chores/ tasks we can help, and offer that help
  • We should not hesitate to share problems the caregiver is facing, and participate in taking tough decisions, while also remembering that the person providing the care is the one who will have to do the actual work.
  • If possible, we should take over the caregiving for some time, to provide the caregiver a break.
  • Showing affection to the caregiver, and empathizing, helps.
  • If we genuinely feel the caregiver is not able to handle the situation, we must consider interventions that will help. But we must be careful not to underestimate the caregiving load/ stress before we take it on ourselves.

[An updated version of this page, with more examples and material, is available at my new site, at this link: Coordinating caregiving between family members The new site also contains an interview that show the sort of problems that occur: Conflicts in the family over dementia care ]

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