COPING AS A CAREGIVER
How to navigate when a disliked family member starts showing signs of dementia,
My husband’s mom has started to show signs of dementia and other health issues. We are suddenly in a situation of having to caregive for her. My husband and his siblings don’t have a warm relationship with her and I truly don’t like her. In a jam
This is a tricky and yet not-so-uncommon situation. Families, as we know, are complex in their histories and in their internal relationships. For many adult children, the role of caregiving is not a wonderful, loving opportunity but rather an unwanted chore or obligation. Many individuals may be caregiving out of guilt rather than love or devotion.
First, it is important that you recognize you may never want to do this job, but you may end up doing it anyway. The question is how to manage it.
The first step is to figure out your husband’s view on the situation. It sounds like he feels he has to do something and negotiating what that “something” is, is a good starting point.
Consider if there are any other family members who can get brought in to the scenario. Sometimes the answer is no, if the individual has become estranged from family; but if there are any other available siblings, or connected family members.
Consider reaching out to them and meeting up. Sitting together and establishing what the resources of the group are can be helpful. The negotiation can focus on trying to figure out how everybody can do a piece of the puzzle and contribute, so that no one person feels overburdened.
Elaine Kohn, social worker at Baycrest explains: “Determine what you can and can’t do. It is important to establish boundaries, assign responsibilities and have defined limitations.”
It is better to know from the outset what people are and aren’t willing to do. In a relationship that is not warm, there is even more reason to ensure that the expectations are spelled out clearly between all the parties.
Determine the scheduling gaps in care, since it is easier to get things done when you know who really will and won’t end up pitching in.
Remember that out-of-towners can help too. Technology has made it easier to do banking, order groceries and complete other chores from a distance.
It is also important to revisit why you and your husband are doing this. Is it to model behaviour for your children? Is it to “do the right thing?” Or is it because on some level he still feels some connection to his mom?
More than one answer may exist. The followup question is what this all means on a go-forward basis. Your mother-in-law’s illness is a progressive one, so care needs are going to increase. Be prepared.
It is good that you have been up front and honest about your lack of desire or liking for your mother-in-law. She need not be someone you enjoy and you may end up helping strictly out of a desire to act as a support for your husband. It may very much feel like a job. This may make the tasks more acceptable.
Financial status is important to determine, both your mother- in-laws and yours. This issue is critical if there aren’t any family members around who can administer care. With sufficient financial resources, you can often hire help to do some of the more intimate or time-consuming tasks (e.g. bathing, or laundry). Some other chores are easier to do from a distance or to subcontract. You may find making her appointments, buying food or paying bills easier to contend with. And make no mistake; all of it may need to get done.
The fact is that and your husband need to find a way to navigate all this, so he can feel he has done his share and you don’t feel that you have been emotionally compromised. Reach out for the professional and community homecare support that is available in your area. Let the professionals and service providers know that you want to help to make things work, but are not a keen participant.
Your mother-in-law in her aging state and dementia may show a kinder and more likeable side than in the past. You can’t forget your history, but maybe as a caregiver you will be able to use your skills to do what you can to help. Good on you for thinking this through, as the investment in that planning will help make it work.
Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of
Dementia A Caregiver’s Guide available at baycrest.org/dacg. Email questions to caregivingwithnira@baycrest.org