How to Work Well with Siblings when Caring for An Aging Parent

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When my dad died 16 years ago, one of the instructions he urged to his four children, "Take good care of mother." We did our best. As it became clear that mom wasn’t just absent-minded but was developing dementia, taking good care of her meant more than phoning or stopping by for coffee. As issues started coming up, we had to make decisions together. When should mom stop driving? Is she using the stove safely? Can she keep her condo clean? Is she taking her meds correctly? When do we need to consider moving mom into assisted living?

Facing such decisions can bring out old tensions and even tear families apart. We did not want that to happen to us. We wanted to care for mom well and work through the inevitable conflicts among us in a healthy way. Within two years of mom’s decade-long journey with dementia, we siblings made two decisions that proved to be of great help to mom and kept the four of us kids working together.

Hired a Senior Citizen Consultant

They go by different names, but the geriatric specialist we hired not only helped us think through the issues we would face as mom’s dementia progressed but also provided us with solid advice about how to get mom the help she needed. Our consultant gave us suggestions about home-health aides, assisted living facilities, and funding available for mom’s assistance. She knew the territory in ways that we did not, and she helped us navigate the challenges well.

Developed a Covenant regarding Mom’s Care

As mom’s care became increasingly complex, the four of us siblings sat down early on in mom's journey with dementia to develop a consensus that would guide the various decisions we made. While these are common sense ideas, the process of discussing them and agreeing to them helped unite us around mom's care and guided us as we made decisions for mom in the following years. Here are some examples from our covenant:

  • We love mom and want what’s best for her.
  • We want mom to be safe, comfortable, well-adjusted, and happy.
  • We want healthy, loving relationships among the four of us for the long term. Though we will have disagreements from time to time, we will resolve them in a loving way.
  • We want mom to use her assets for the best possible care for her (instead of trying to maximize inheritance for the four of us).
  • We want mom to remain in her condo as long as she can safely live there.
  • We will implement decisions regarding mom’s care only when we have consensus among the four of us, and we will develop clear plans for implementing those decisions including timetables.
  • We want mom to participate to the degree she is able in decisions regarding her care/life as long as and as much as she is able.
  • We discuss issues regarding mom’s care freely with our spouses.
  • Mom has dementia, and it is getting worse.

As I look back over the past 10 years, I’m amazed that we siblings did as well as we did. I can easily imagine us infighting, unresolved disagreements, triangulation among the four of us, and lingering bitterness as we move into a future without mom. Instead, we can look back with thankfulness for mom’s life, satisfaction that we did the best we could for mom while she was alive, and gratitude that we still get along well with one another. Both the senior citizen consultant and the covenant for mom’s care helped bring about these positive outcomes. Dad’s call that the four of us take good care of mom helped too. And so did one more thing. Before mom developed dementia, she regularly called us four kids to get along.

I think we did okay, mom. Thanks for the advice!

Do you have experience caring for an aging parent? What have you found helpful?

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Participant

Thanks Mark. This was helpful. We have not hired a professional to assist us but my three siblings and I have worked through many of the items on your list as we care for our mother. A couple things that stand out for me. Our mother longs to die in her home. She has no desire to move to a care home or come and live with her children. Back when she was able to think clearly we asked her what she wanted to have happen as she aged and with tears streaming she assured us that if God should give her the longing of her heart she wanted to die in her home. That is something that we are able to bear in mind now when she is less able to make decisions. I would advise children to have that very awkward conversation earlier rather than later as it has helped tremendously to know her heart's desire.

We recognized that living in her home would require care givers and others to help meet her needs and since none of us live close to her we know that would require hiring those folks. We recently took away her car and that means she needs rides to church and the store and the doctor. We have found those she trusts to help her to do that which she can no longer do. We are not all able to share equally in sharing the burden of providing for Mom and that means we have to deal with those issues as well. It was also important for us as siblings to talk through our own fears and concerns about our future and distinquish those feelings and desires from what is best for Mom. If my own fear is that I won't have moiney for my retirement it is easy to transfer that fear on to Mom's situation when it fact it is not her concern at all.

We also needed to collectively recognize that we can't keep Mom safe. She is elderly and lives alone so it is more likely than not that she will die from some event while in or around her house. Perhaps she will fall in a tub or have a heart attack in the yard and she may suffer before someone arrives to care for her. We can give her a emergency button to push, but we can't make her wear it nor can we keep her from falling. As we discussed that we realized that even if we lived next door it would be hard to 'keep her safe'. Her safety now, as it has always been, is that she belongs to Jesus. As she experiences the joy of living in her home of 50+ years we must remember that there is a real potential cost to that reality.

Some things we have done and are going to do make Mom unhappy. Again, we are not responsible for her happiness. We want her to be happy, but we make good decisions in the collective to make sure she is best cared for. If happiness is the goal she would still be driving but running stop signs and being unable to see down the road means we have to take away that privilege for the sake of others. That upsets her, but it is the wise and necessary thing to do.

Amen and amen to the building of concensus among the family members. It is so important to keep talking until concensus is arrived at.

Rod Hugen

 

Guide

Rod, thanks for sharing. Because each family situation is so different, the process of arriving at consensus is as important as the consensus arrived at. Good communication is essential, and hard when you have to talk about topics like the ones raised such as accidents, where one will die, how care will be administered and by whom. Needs so much love and prayer! Mark

Participant

Rod raises some important points about caring for elderly parents with dementia.  In my 23+ years of working with persons with dementia in a longterm care facility, I've come to the conclusion that it is unfair of parents to ask their children to promise that they will never place them in care.  It is equally important that children not promise that they will not place their parents.  The time may or will come where, for the sake of their health, safety and quality of life, placement will be necessary.  In fact, it would be unethical for a hospital to discharge your parent home if it would be unsafe for your parent to continue living in their own home.  My experience is that most admissions to care follow from hospitalization for fractures or other serious health issues. 

There is no denying that admission to care is very traumatic for the elderly person, just as any move is, and the trauma is increased in a person with dementia.  They lack insight into their disabilities, they can become extremely angry about the placement, and it can take a long time to settle in.  When parents and children make promises to each other about placement, stress from guilt trips for not keeping promises invariably pursue, making the transition even more traumatic.  If we are going to make promises to each other, it needs to be that we will make sure that our parent gets the best possible care available, in a care facility if necessary, that will maintain their dignity and provide care in a loving matter (as we as family would do if we could).  My experience is that the move to a care faciltiy eventually results in improved health, increased cognition, and  generally a better quality of life.

Mark, your experience of a family covenant is an excellent one, as long as all siblings are willing to be involved in it and adhere to it.  Siblings also need to recognize that everyone cannot be equally involved in carrying for their parent.  Sometimes it's geography that prevents it, sometimes it's the individual talents of the siblings that dictate, sometimes it's time management and other responsibilities that comes into play.  But it is important that all siblings actively support the ones who are most involved with the parent, as they are the ones that know the needs of that parent best.

For older folks reading this, take the opportunity to discuss with your children what your wishes are should you not be able to make those decisions for yourself any more, and put those wishes in writing in a Personal Directive.  Assign a family member whom you trust to  honour your wishes to be your alternate decision maker, and inform all family members who that is.  Also give thought and already put in place a family member whom you trust again to co-manage you financial affairs as you would wish them to be handled, so that they can continue to do so even when you can't .  Having both of these things in place could also save you a lot of money in legal fees.

There is no doubt that aging is difficult, especially when it involves ill health and loss of mental faculties.  But we all must face the possibility that this could, and most likely will, happen to any one of us.  Take the time now to make plans for when you can no longer do so yourself.  The discussions will most assuredly be difficult - in fact some may describe them as morbid - but it can also become a time of joining together as a family and pledging the best for each other.  It can be a time for pledging support for each other and for you, until such time as the Lord calls you home to be with Him.  Then your children will be able to celebrate the life you lived and that you are now in a perfect place, rather that mourn about what-ifs, could-haves, and regrets.

Participant

Thanks Elly,

I appreciate the reminder to do what is best for Mom even though that may not be her wish. As siblings we recognize that we can't guarantee to meet her longing to die in her home, but it was oh so helpful to know that was her desire. My stepfather, who suffered from dementia longed to die in a care home and God answered our prayers in that regard. Again it was so good to have had the difficult conversation when they were both able to speak their longings clearly.

My siblings and I recognize that since I live closest to Mom and since I also have some ability to handle her finances it made sense to have me take on more of the responsibility around care. Having power of attorney over her affairs which she granted many years ago has been so helpful. We were able to catch a scam attempt before she lost a good deal of money because I could act quickly on her behalf. The event made me mindful to talk to my sons about my own longings for the future and give them permission to act on my behalf when they see me unable to properly care for myself.

Every situation is unique, but your wisdom and understanding are so very helpful. Thanks.

Rod

 

Thanks for the good discussion on a very sensitive topic. We all get lumps in our throats when we discuss the difficulties of aging, whether it involves our parents or our own aging process. In my work with elder folks I see many family members in denial. This does not help at all and mostly makes a difficult situation even worse. Thanks for demonstrating the courage it takes to face the realities and deal appropriately with these issues. Hopefully, this discussion will help people to do some preemptive stuff to encourage a smooth transition from this life to the next.