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When full time care is needed for your loved one: Choices in hospice and home care

By Patty Ayers

So, imagine this: for the last three years you have been caring for your dad in your home with the assistance of your spouse.  Until this day, Dad’s health was not great but he was at least able to walk, eat and dress himself with little to no assistance.  But today when you went to wake him, it appears as if may have had a small stroke or something neurological that has changed his ability to do anything for himself.  You call 911 and he is taken to the hospital.  After being evaluated, his doctor said that only time will tell if he will regain his ability to do things for himself.  Furthermore, the doctor has informed you that Dad’s heart is failing and he refers you to palliative care.  Dad is then sent to a long term care facility for rehabilitation and will be sent home in a few weeks.  Over the next month it becomes apparent that dad will require total assistance when he is finished rehab.

At this point you might be feeling a little lost, overwhelmed and asking yourself questions like “how will I care for dad now?”, “Should I consider placing him in a nursing home?”, “what will it cost if I need to hire someone to help with his care?” And “who do I call for help?”

Each and every day millions of middle-aged Americans are faced with a similar scenario.  Most children do not anticipate that they may someday be caring for their parent and thus do not plan for how they will do it or the expenses involved.  Of course there are many things to consider prior to making any decisions.  In a perfect world, dad would have financially planned for his care in advance and has left you explicit instructions as to how he wants to live his remaining days, but, unfortunately rarely does that happen.

So what exactly are your options?  If you decide that a long-term care facility is the way you want to go, then you will need to consider the following:

Long-Term Care

  • Deal with your own emotions: Before you go through the trouble of working out the financial details of long-term placement, you should first consider whether you will be able to emotionally handle placing your parent(s) in a nursing home.  Many children feel guilty when they have to put their parents in a long-term care facility because they may have promised them that they would never do it or feel that they are doing their parents a disservice as Mom or Dad won’t get the good care they deserve. You should research the difference between a good LTC facility versus one that may be understaffed or not so good.  If you can, visit several local long-term care facilities in your area. Try not to listen to the horror stories of others, as everyone has a different perspective and you are only hearing one side of the story.  Remember, sometimes placing your parent in a LTC facility may be your only option.
  • Documents, forms, and finances: Hopefully your parent has signed over financial Power of Attorney (POA) before he or she became ill, or you have applied for conservatorship, also called guardianship through the courts.  If you do have POA, then you will need to take a look at their finances.   Most long-term care facilities cost about $5,000 to $7,000 a month.  Medicare will pay for room and board while in rehab, but once they are discharged from rehab to long-term care they no longer pay for room and board.  If your parent has saved the funds to pay for this–great!  If they have not, which is usually the case, you need to apply for Medicaid benefits while they are still in rehab. There are many documents that need to be gathered when you apply for Medicaid.  It is an arduous process, but well worth it.  You should check with your individual state regarding the guidelines for eligibility.  In most states, income cannot exceed $2,000 a month and a person cannot posses more than $2,000 in liquid assets.

Perhaps caring for your loved one at home is a more comfortable option for you and your family.

Care At Home

  • If you are primary caregiver: If you have the financial means to care for your parent at home or have the time to dedicate to them, there are some things you should consider.  If you plan to do the physical care for your parent yourself, remember that this is a 24/7 job.  Most people do not realize the work involved and become burned out very quickly.  If you are caring for a parent 24/7, remember to give yourself a day off here and there.  If you have siblings or family members that have offered to help you, take them up on it.  Find help through religious communities or some volunteer agencies.  When the time comes and you are ready for hospice services, remember that most hospice agencies offer volunteers as part of their service.  
  • Working with a home health agency: If you are like most of us and need to work, you can work with a homecare agency and hire a home health aide or companion to care for your parent during the hours you are working or you are unable to provide care.  Most agencies offer from as little as four hours a day up to 24/7.  The rate per hour goes down the more hours you request.  Sometimes you may get lucky and find a friend or a friend of a friend to hire as a live in caregiver for less than an agency rate.  But be cautious, this seems like a good idea but sometimes you get what you pay for.  Make sure that this person has experience and plenty of references.

Last, remember, that you are your parents’ best advocate.  Whether you decide to move them to a LTC facility or care for them at home, don’t be afraid to speak up should you be unsatisfied with the care you feel that your parent is receiving.   If you don’t like the first nursing home then consider moving them to a new one.  If you hire an aide from an agency and you are not pleased with the care they are providing, then you can ask the agency to find you a new one.

Resourcefulness is the key!  Many times a family is able to find coverage for the hours they need by filling in the gaps of time with family members, friends and members of the hospice team.   Also remember, any decision you make for your parent will be the right one because you love and care about them.

2 Comments Post a comment
  1. this is very informative for me, as i am walking in that direction now of considering

    August 9, 2012
  2. Patty Ayers #


    I’m glad this information was helpful. It’s never easy to deal with difficult decisions, but having the information available when navigating the system does make it so much easier.

    All the best,

    August 11, 2012

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