Ruth is 92 (and claims she never intended to live this long...), with multiple serious health issues. She was living independently (with support from me) until her last hospitalization which left her so weak (including being unable to stand or walk) she now needs a skilled nursing facility.
What I've come to understand after both experiences, trying to keep her independent at home with multiple health issues, and now having her in a facility, is that either way, we caretakers have the proverbial full plate if we want to ensure high quality care/life.
Here's what I've learned during this long trip (not the LSD kind, which is looking better all the time...) with my mother as her health continues to decline. If/when it's your turn to go down this path, I hope this helps you navigate the road a bit more confidently.
Conduct yourself like a professional healthcare coordinator who is responsible for a full understanding of all aspects of the patient’s care (starting with a crash course on the diagnosed conditions and their treatments – you can get lots of factual information online). Do not blindly accept information or opinions of medical professionals who see hundreds of patients a week and spend very little time with each of them.
And if you’re thinking “I don’t have time to do that” you actually do, because your already spending that time reacting to crises created by the ineffectual care being given to your loved one – proactively staying ahead of the curve is a much better use of that time…
Hold your healthcare professionals accountable for quality care:
Do not accept non-answers, condescension, vague answers, answers in medical jargon, or the attempt made by so many doctors to treat your questions as silly, unnecessary, or the time needed to answer them as annoying – you would not accept this of any other service provider, and a doctor is no different.
In fact, seek out the leaders in the specialty associated with your loved one’s diagnosed condition, wherever those health professionals are (if your loved one is still able to travel) – do not limit yourself to your geographical area or even your State. The cardiologist who saved my father’s life numerous times when all the "best docs in the field" here in Tampa had sent him home to die, is located in NYC. Also remember, this is a business, so do not accept guilt trips, hurt feelings, or any other unprofessional reaction on the part of your doctor – if that happens, find another doctor.
Stay on top of your loved one's care in any facility, whether the hospital, fully skilled (eg "nursing home") or ALF:
Here in FL, regulatory oversight of Skilled Nursing and Assisted Living Facilities is lax at best, a bad joke at worst. Even if it’s better in your State, don’t rely on others, whether government entities or facility/medical staff, to “do the right thing” by your elder, or yourself. That’s up to you…and you alone.
Whether you live neaby, or in another State, you must make sure:
- your loved one gets their meds administered correctly every day (staff tend to give out meds in times/ways most convenient for them, not based on patient need)
- appointments for any outside docs you want your loved one to see are arranged (by you) and that their orders are followed correctly by the facility staff
- your loved one's daily care is consistent and responsive (patients without regular visitors/check-ins by loved ones are far more likely to get poorer care - I've seen it over and again with my mother's "roommates" who had no one - they quickly had me advocating for them by proxy), and
- if necessary, hire a trained aid from a credible home health agency to be with your loved one each day to ensure as much active engagement as possible.
You have been officially alerted.