Between a Rock and a Hard Place.... Part 1 of 3

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You notice that your loved one needs help. Maybe they are suffering from a physical ailment or cognitive decline. Naturally, you want to get them help, but you find they’re resistant. In fact, they stubbornly and steadfastly refuse help of any kind.

What do you do when a family member refuses help?

This issue is arising more and more.  My generation is being sandwiched in between our parent's generation and our children in terms of having to care for both sets at the same time.  Additionally, our parents may be living longer, but not necessarily with quality of life. You just have to look at the explosion of Alzheimer's to see that.

While your loved one refuses help, you find yourself "helping" anyway. It may start out in small ways at first, but can quickly snowball. This can take the form of helping them clean their house and buying groceries, to running to the ER when a crisis occurs.  You're exhausted, how can you make sure that your loved one is getting the care that they need even when you are not around?  This can be especially tricky when your loved one does not acknowledge that they now have limitations.  They may be in denial about their situation or they are quite happy continuing with you as their sole caretaker. 


Whatever the scenario, it's a good idea to first step back and assess the situation and do your homework.

By this I mean the following:

1. Think about what your main concerns are and what you have observed to back them up.  Take the time to write this down.  If you would like a checklist to use, consider this Assessment Checklist from AARP.

2. If you think there are cognitive issues, Dr. Erich Goetzel, MD, MA, Lac (Owner of My Health 101 P.C.) suggests that "to be more objective, you take the AQ-21 quiz.  This questionnaire has a set of 21 questions, which are designed to measure whether there are objective symptoms of memory loss.  Please note – this is NOT a diagnostic test, but it can be helpful with other family members and doctors." If you are not the spouse, but there is a spouse in the picture, this assessment would be important for them to take as they spend the most time with the person.

3. Out of these concerns, prioritize them.  Are any of them life-threatening right now? For instance is their home a safety hazard for them or does it just make you feel uncomfortable because there is too much clutter?  Are they losing keys occasionally or did they get lost while they were driving to a familiar place? During this step. make sure that the issue is not your issue, but instead something that is a real medical concern or a safety concern.

4. If there are other family members, make sure to get them on the same page.  I suggest meeting with them and sharing the list of concerns that you previously compiled.  Have they observed the same things? Are they on the same page? In short do the family members all agree with the current concerns?  If not, I would try to come to some kind of agreement because if your loved one is refusing help and other family members are agreeing with them then you will not get very far.

5. When you speak to your family members, discuss what each person's role should be in terms of care.  Even if you do not feel your loved one needs care at the moment, it's good to have agreement about what people's role in the future could be.  The reason for this is that often the person that lives closest by default get the lion's share of the care.  This can create much resentment in the family, especially for the family member who lives closest and didn't explicitly sign up for this caregiving duty.  Even those members who do not live close by can help in some way.  For instance, they may contribute money towards the cost of care needed or they can provide help remotely – like paying bills online or ordering groceries online that are delivered.  In this day and age just because you live far away doesn't mean that you can't help. Other ideas are getting appointments made, having supplies brought in, helping to manage different caregivers, etc. Sorry - it doesn't let you off the hook.

6. Investigate specific services and doctors in your area that would be able to address your top concerns.  Do your homework and call the doctor's office and the service providers and have the details in terms of what they provide, the cost and the availability.  This way if you find that your loved one is open to certain suggestions, you are ready with specifics that you can share.

7. As part of your meeting with your family members and your research into services and doctors, the all-important discussion about money and finances has to be taken into consideration here.  This may be a limiting factor about what can be done for your loved one or you may find that there is more out there than you thought and that it can be encouraging and empowering.

After this phase, you should understand what issues are most important and which ones you can let go.  You should also know what you and other family members are willing to do and to pay for. 



But what about including the loved one in these discussions?

Admittedly, this is delicate.  To clarify, the homework you just did is to determine what you and other family members are willing to do.  I think it is important to know your boundaries and issues before you then discuss it with the actual loved one.  You may not be able to have an honest and calm discussion if you haven't gotten clear and know what you are willing to do.  Knowing what the options are for your loved one is important so that you can have a focused discussion with them.   Without doing this step, you may exit your discussion with your loved one taking on more than you were willing to do or making promises about the services that can be provided and then not being able to deliver on those.

In the next part of this series, I address understanding the dynamics of what your loved one is going through and why they may be refusing help.  Knowing this and understanding the challenges here will help you to have better discussion with your loved one.

Stay tuned for next month's blog! 

In the meantime - check out my website and sign up for a free 15 minute consult!
Julie Kenney