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Caring for someone with a long term illness

Consider a variety of issues and options before accepting the responsibility of providing care.

It can often come as a shock when a companion, friend or loved one is diagnosed with a chronic condition. All too often plans have not been made and you find yourself exploring options and getting ready to make difficult discussions. Perhaps now is the time to think ahead.

Think ahead
If you still have living parents or might need to care for another family member, 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 t 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 person will live have enough safety features? Are your children or spouse/partner aware of the lifestyle constraints that your caregiving will involve?

Question 3: 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 kindest, safest and most effective care possible is what is best for your relative in the long run.

Question 4: 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 provide care does not mean you’re home free and off the hook. 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 learning about how nutrition, exercise or medication affects the disease.

Family members may also need to consider how they will physically care for Mom, Dad or sibling, etc. 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 someone take a bath or use the restroom. Know also that its awkward and never 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 thoughtful 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 and agreed on plan for care that everyone in the family understands will lessen stress or confusion later on.

Best care possible
While professional caregivers find that almost any situation can be handled at home if safety measures are in place, there may come a time when a retirement residence, nursing home or palliative care team comes into the picture. It’s important to keep in mind that 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.

A move to long term care can be complex, demanding and, at times, hard on family relationships and friendships.

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, its best to weigh your options, get solid advice and look before you leap into a short or long-term caregiving role. 

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

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