Case Management, Elder Care Management, Guardianship Support, Life Care Plan, Medical Consultation

Passing The Torch: The Caregiver’s Burden

 October 4, 2016

By  Deborah L Weiner Katz, OTR/L, CCM, CLCP

Caring for a loved one with special needs is a lifetime responsibility. Dealing with the fact that your loved one’s needs may outlive your lifetime, or at least your ability to manage their care, can be a terrible burden, at first.  A burden that may have long since been alleviated or cancelled out by unconditional love will eventually become a torch that must be passed to another. Your successor may be Medicaid-funded assisted living or it could be home-based services. Since 2013, nation-wide spending has shifted radically from large institutions, such as mental hospitals and nursing homes, to smaller community and home based care. Some states no longer have such institutions at all. The big picture; folks save money while caregivers have more input when it comes to the individual or individuals who will be taking that torch. Arranging for such a transition is a major undertaking so it helps to be as informed as possible as far as what to look for.


Whether it is that time to pass the torch, or just a time for some much needed assistance, it is most beneficial to all if you know and explore all options. For every avenue you explore, don’t forget to back up and head down as many others as you can. This is a decision you want to make after you’ve exhausted your options. Here are some pointers in the right direction:

  • Seek the assistance of a care manager. Experts, such as those at AdvancedRM, know the ins and outs of the system, what type of facility would best suit your loved one, what type of care giver would be best, and can help you to plan for the future while dealing with the day to day.
  • Ask friends and extended family what and who they know regarding special needs caregivers. Seek personal recommendations.
  • Contact local universities, colleges and other educational outlets. See if they have any helpful programs with volunteers.
  • Local social service agencies might sound obvious but that’s all the more reason to inquire, if there are any in your area.
  • Try the web site Care.com and click on their special needs category.
  • A little more of an “outside the box” option would be seeking out an au pair agency. An au pair visa arrangement allows non-citizens to come to the United States as part of a cultural exchange. They typically specialize in childcare work but they also further specialize in caring for those with special needs.
  • The last suggestion, and it may be last for good reason, would be Craig’s List. Anyone who’s sought anything on Craig’s List can tell you how “hit or miss” the site can be on its best day. That does not mean it is impossible to find good people. You just have to be willing to wade through one small corner of the human gene pool until you find a caregiver you can trust.


Yes, the topic is now being narrowed down to…the interview. It doesn’t matter which side of an interview you’ve been on, if you’ve been on one, you’ve probably had at least one experience where one simple question answered could have saved at least two people some time, some money and some gas. It is no different when you’ve gathered your pool of potential caregivers. Write a short list of deal breakers. Screen the candidates. If your loved one requires help in the bathroom and a candidate has a rule against that kind of assistance, there is some time, money and gas saved.  If you have trouble, simply write out your daily routine and convert it into a checklist. Voila!

The average citizen may be failing more than ever when it comes to the challenge of being present and in the moment. That is no excuse when it comes to what you should demand of a candidate once you meet them face to face. You are placing the welfare and safety of your loved one in their hands. Enough said. Also please note that these interviews will not require the presence of your loved one, especially if he or she is a child. These meetings are for you. The ultimate meeting will be discussed soon enough. For now, this is a list of details to keep an eye out for when meeting candidates face to face:

  • Smartphones: You probably got a lot of work done on your smart phone, including arranging this meetup. The same is probably true of the candidate. Now that you are face to face, the smart phones need to go away. Without even getting into manners, you already know you need someone who will be focused on the task at hand. Not being able to put away a device for an interview does not bode well for job performance.
  • Appearance: Appearance is everything. Oh, I know what you want to say. Trust me, I think you know where I’m going with this. Hygiene and dress are just two of the major clues you need to be minding if you want to make the right choice. It is safe to say that when it comes to granting access to your special needs loved one, “It didn’t feel right” is a perfectly acceptable justification for turning someone down.
  • Interview: Don’t forget to actually interview them! Most importantly, let them tell their story, or stories. Observe their nonverbal sues as they answer your questions. Take note of the sort of questions they ask and monitor their listening skills when you speak.


Are you the final judge in this process? The best answer is ‘sort of’. While someone with special needs may not be able to select their own caregiver, they will still be the only other participant every day from here on in. Therefore, that process must be observable in some way. How do you know if your caregiver and your loved one are a match?

If it is child with special needs we are speaking of, then it must be clear that you will be looking for different kinds of interactions then you would be if it were an adult. A child with special needs is still a child, a developing human, and you must be extra sensitive to the caregiver’s handling of this. While you may likely have already worked hard on establishing the child’s attitude and understanding regarding his or her condition, you are also now passing that torch to a degree. You seek a worthy successor. Have the child and the caregiver meet someplace where the child is most comfortable, possibly doing something he or she enjoys. Give the reins to the candidate and simply observe the choices he or she makes. Watch how they communicate.

  • The “mall” question: There is a specific interview question that has been suggested by other caregivers going through this. It essentially asks what the candidate would do if accosted by individuals making offensive remarks toward your loved one while spending a day at the mall. While it may seem as if countering the remarks and “standing up” for someone with special needs would be the correct move, the real point of the question is see who thinks of ensuring the safety of the person they are responsible for. It is not always a black or white answer because while a person who gives the expected answer may fail the test, they still make end up giving you valuable access to their beliefs, to the contents of their heart.

An AdvancedRM Story

Our favorite feature on AdvancedRM.com is always the stories we get to share of special encounters with real people. For every page we feature in-depth descriptions of our services, we back the data up with anecdotal evidence. In other words, we enjoy recalling the families we have been privileged to serve.  Take Edith Boothwyn for example. The page goes into greater detail but one of our most important discoveries upon visiting her home and interviewing her caregivers was that none were licensed in nursing! No one was monitoring this poor elderly woman’s vitals on a regular basis.

Our involvement as care managers is a sort of intervention, to keep you from passing the torch to the wrong people. In lieu of our involvement, if you must select a caregiver, treat it like any interview. Before it comes to an end, try to think of anything you left out, physical or logical details such as the person’s ability to lift a certain amount of weight. When it is over, don’t forget to check references. After all you can’t be too thorough. You can’t be too specific either, especially not when it comes to money. You know full well what being a caregiver entails when it comes to workload. It can’t be too hard to imagine the sort of compensation you’d have expected or welcome had you been paid for the care you’ve given over the years. The person you are considering passing that torch to will be quite interested as well.

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