Caring for a loved one with a long-term illness 

Family caregivers should consider a variety of issues and options before accepting the responsibility of providing long-term care

By Jeff Salter

It can often come as a shock when a loved one is diagnosed with a chronic condition or disease and too often, families have not had time to prepare for the fact that their loved one now requires around-the-clock care.

Think ahead
If you are nearing 50 years old and still have living parents, it is time to have “the conversation“—no matter how difficult the discussion may be. Getting prepared yourself involves a few key questions as well. 

Question 1: “Do I want to do this?” Despite how it sounds, this is not an uncaring question. The fact is that if this is not something you want or have the ability to do, you probably won’t be able to do it well. Many of us must also ask if we have the financial ability and necessary time.

Question 2: Ask yourself some logistical questions: does the home where the patient will live have enough safety features? Are your children or spouse aware of the lifestyle constraints that your caregiving will involve? Are you able to take time off work or away from other family members to provide the care that will be needed?

It’s not selfish to admit that you may not have the physical, emotional or financial means to offer the kind of care your loved one will need as the disease progresses. After all, providing the safest and most effective care possible is what is best for your relative in the long run.

Question 3: Can you afford a third party to handle some or most of the care? Know that just because you have hired a third party to care for your aging loved one does not mean you’re home free. Time and attention will still be a fact of life from now on.  

A deeper dive
Your research should be more than looking for a quick cure or the best medication. You will also need to fully understand the illness and what the best practices are in managing the disease. Sometimes this means understanding how nutrition, exercise or medication affects the disease and your loved one’s response to it.

Family members may also need to consider how they will physically care for Mom or Dad and may need some training to understand how to properly lift and transfer their loved one so no one is seriously injured. 

Emotionally, you may also need to steel yourself for the fact that you may have to help your parent take a bath or use the restroom. Know also that it’s awkward and not always easy for a parent to relinquish the role of caregiver to their child. 

Medical advocacy and legal issues
Money and health are sometimes two of the hardest issues to discuss. For an aging parent who has been self-sufficient for 50 years or more, the idea of handing over some or all of their decision-making may be difficult. Adult children need to have a discussion with their aging parents about medical or durable power of attorney documents, wills or other authorizations that may become necessary over time.

Hint: Family dynamics can be stressful, so having a clear, documented plan for parental care that everyone in the family understands will lessen disagreements or confusion later on.

Less confusion and more care
While professional caregivers find that almost any situation can be handled at home if safety measures are taken and your aging loved one is not in need of urgent care, there may come a time when a retirement residence, nursing home or palliative care team comes into the picture. Doctors, professional caregivers and other medical personnel are trained to help with these decisions and conversations will work as independent, unbiased mitigators using rational tones and patient words when difficult conversations arise. Be sure to ask for their advice and support along the way.

Long term care can be complex, demanding and, at times, hard on family relationships.

Be sure to think about the effect on your lifestyle, nuclear family and the impact on your work place before you make any big promises or firm commitments. As with any decision, it’s best to weigh your options, get solid advice and look before you leap into long-term caregiving. 

Jeff Salter began his career in senior care in the early nineties. Visit caringseniorservice.com.

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