One of the most challenging crossroads you will come to in this lifetime is the decisions required when someone you love needs more care than you can provide. One of the most common times to make these decisions is when an aging loved one needs full-time nursing home care, although there are other times as well.
Other times a loved one needs more care than you can provide include when a family member needs full-time addiction or mental health treatment, when an adoption is disrupted, when foster children are moved to a new home at the request of the current foster parents, when you requesting full-time nursing care for a family member, when you take a sick person back to a hospital or facility, or you move a dying loved one from home care into a hospice facility.
When someone you love needs more care than you can provide, you will be faced with big decisions and you will have a number of complex emotions. Recognizing these decisions and emotions certainly doesn’t make them go away, but it helps to be prepared.
I share with you as someone speaking from experience. We have had to make these heart-breaking yet necessary decisions for our family members. When making tough decisions because someone you love needs more care than you can provide, you might feel isolated and alone, but know many of us have experienced similar situations.
Handing Big Decisions When Someone You Love Needs More Care Than You Can Provide
Here are some of the big decisions you might face when someone you love needs more care than you can provide.
The decision could be sudden or a process.
There might be one catastrophic event that leads to a decision to move a loved one into a treatment center or facility situation, or it might be a culmination of many smaller situations. You might reach a time that your own exhaustion is at the breaking point. Safety issues are a strong factor in making these types of decisions.
Your loved one might not agree with your decision.
An aging parent might not want to go to a nursing home. Children might not want to attend treatment programs. Can a doctor help with discussing placement options? Is an intervention possible? Does the county, state, or court system need to become involved? While we often hate to see government systems step in, sometimes this is what’s necessary to get a loved one proper care.
Family members may not agree.
Extended family members may not agree with your decision. Who is doing the majority of the care-giving? Who knows your loved one and his or her needs the best?
Financial decisions will need to be made.
Treatment programs, in-patient stays, and long-term care are incredibly expensive. What options are available to pay for this? Often your best ally for finding this information is the treatment program itself. They have beds to fill and the way to fill those beds is with people like your family member. Let them do their job and help you get the placement and get it paid for. Every day they work with families like yours and help people get the proper treatment and get funding secured.
Insurance.
Along with financial decisions, dealing with insurance often feels like a necessary evil. Request a patient advocate if possible. Medicaid, insurance companies, and hospitals often have a patient advocate.
Keep in mind a patient advocate who works for the insurance company is still getting his or her paycheck from the insurance company. Still, we had a Medicaid patient advocate who spent hundreds of hours fighting for us to get the proper treatment for our son with behavioral needs, all as part of his care because he was a Medicaid patient.
Seek expert help.
When necessary, consider hiring outside expert help. If you are facing high medical bills, a private patient medical billing advocate will fight to get these bills lowered.
Our family has hired a Special Education advocate to see that our son receives all the rights he deserves as part of his IEP (Individual Education Plan) through the school district, and we have also hired an attorney when we were working with the Department of Human Services (county social services). Could we afford it? Not really, but we did it anyway. Not only was their advice invaluable, but the reality is that large systems treat you in a completely different way after you hire an advocate or an attorney.
You may not get what you want.
Even with strong advocating, you may not get the treatment or program you want for your loved one, or you may have to wait. Places in the program may be full, or the health of your loved one may have to decline even further before he or she qualifies for the program requirements. This is a highly frustrating reality many of us have faced.
The rest of your life will still going on.
One of the toughest aspects involved in getting a placement for a family member is that you’ve got this huge issue you are dealing with, which involves sorting through paperwork, dealing with insurance, regular care giving in whatever form that takes, and then on top of it regular life still goes on. You juggle work, other family members, your spouse, the house, and on and on.
Be kind to yourself and recognize how much you are doing during this tough season.
Handling Complex Emotions When Someone You Love Needs More Care Than You Can Provide
When someone you love needs a higher level of care, these are some of the emotions you might experience.
Guilt.
You may feel guilt that you couldn’t keep your loved one at home with you longer. You might start to play the “if only” game and wonder “if only we had tried this medication, he would still be here” or “why didn’t we go see that doctor sooner…”. We all think these things so allow the thoughts to come but then allow them to flow out as quickly as they flowed in. These are normal feelings all of us have during these situations, but the sooner you are able to let them go the more healthy you will be, and ultimately the more you will be able to be there for your loved one.
Relief.
Often by the time someone needs facility care, the level of care giving in the home is so intense you cannot even go to the bathroom by yourself, let alone get out of the house for a break. You might not have had true respite for many years. The sense of relief knowing your loved one is safe is beyond words. You feel like you can let out a breath you didn’t even realize you were holding. (This might lead to more guilt. Let this come and let it go, once again.)
Trouble relaxing.
You’ve been “on duty” for so long (even while sleeping) so now that you can relax, you have trouble doing so. Depending on your situation, you might have experienced secondary trauma. (Please read this post about Secondary Trauma, or Secondary PTSD, the warning signs and help available.)
Our son has had several in-patient hospital stays and each time I feel a tremendous sense of relief at first, but then after a week or so I feel an antsy void that is hard to describe. Of course I miss him very much, but this is beyond that. I have trouble relaxing. This is an area where I am working on myself and consciously learning how to relax and enjoy downtime.
Grief.
You will feel a deep sense of loss, especially if your loved one is in a nursing home and will not be returning home. This grief process is absolutely normal. Allow any and all feelings to come however they come, from typical to unusual.
Embarrassment.
Mental health issues carry a stigma in our country, and long-term stays for issues such as suicidal thoughts, alcohol and drug treatment, or other behavioral issues can leave families feeling isolated and unsure of how to handle questions that come up. As it’s been said, “With mental illness, you don’t get a lasagna.”
Fear.
You may be worried about your loved one. Is he being treated well? Is he treating other people well, or raging and causing all kinds of ruckus? Does he miss me as much as I miss him?
Acceptance.
In time you will find yourself coming to a place of acceptance, which might bring another level of sadness, because this isn’t something you want to accept. Yet acceptance is healthy because this isn’t a life situation you can change, and you have made a decision that is in the best interests of everyone involved.
As you move through the decision process when someone you love needs more care than you can provide, these are the big decisions you will face and the tough emotions to work through. As I’ve gone through this, I love this Winnie the Pooh quote,
How lucky am I to have something that makes saying goodbye so hard.
-Winnie the Pooh
Have you been through a situation where a loved one needed more care than you could provide? What big decisions did you face and what emotions did you experience?
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This is a great post, Sara! I especially appreciate the thoughtful advice of seeking an advocate who knows a patient or individual’s rights and will work hard to see that they are honored. When cost is an issue, hospitals and large institutions have social workers who can help too. However, the level of tenacity and involvement certainly varies.
I also really love that you are honest about both the disagreements people will face with care decisions and all the very complex emotions involved. Great insight and help to normalize those things.
Thank you!
Thanks for your feedback, Heidi. These are tough situations for families and there are no quick-fix easy answers, but it helps to know others have been through it and that support is available. (Sometimes you really have to search it out, though.) Most of all I’m thankful for Jesus and we have a God who never leaves us.