Health Care Hurdles | My Mothers' Caregiver
An elder care roadmap & observations from the journey

Health Care Hurdles

Navigating the Health Care Hurdles

A large neon sign that says "Surprise" should be posted above every hospital because once you walk through that door that's what you become - surprised.

Please let me clarify. My mom was hospitalized for over four months in two local hospitals as she recovered and waited for a free local long-term care bed. I was blown away by the wonderful care and loving concern she received from the nurses and hospital staff. This is not a bash-the-health-care-professionals blog. However, there were many times I felt ill equipped and uninformed. There were many times I had to be a little pushy and act as an advocate for my mother. You will have to do the same. Below are some things I learned along the way.

The hospital's agenda and your agenda are not the same. My first big surprise after my mother suddenly began showing signs of her delirium and dementia, was how quickly the hospital wanted to categorize my mother as "nursing-home ready". Even though her symptoms had come suddenly and we were still discovering what was wrong with her, in just two days the hospital discharge planner was phoning trying to gently force me to place mom in any available secure Alzheimer nursing home bed. At the second hospital, two hours after mom arrived by ambulance her new doctor phoned me and asked when she was leaving.

A bed-short and cash-short hospital wasn't interested in waiting around for a woman who was over 80 to improve. The hospital's agenda was to get my mother out of that hospital bed and into a nursing home bed (any nursing home bed) as quickly as possible. This doesn't make hospitals bad - it is just the reality in which we live. Doctors and hospitals are under extreme pressure NOT to place seniors (who are not really going to get better) into acute care beds that are needed for sick or injured. This creates an uncomfortable tension between those offering care and receiving it. At times it leave hospitals seeming uncaring and even hostile to unknowing families trying to get care for their elderly parents or spouse.

Because the shortages of hospital beds in our area, Mom's first hospital stint was an hour's drive from our home and several hours away from anyone else in our family. Placing Mom in a long-term care nursing home so far away seemed completely unfair, especially since we did not know what was causing her behaviour. As a family we decided to stand our ground. I refused to place Mom in a nursing home more than thirty minutes from my home. This made me unpopular with her discharge planner and doctor.

It turned out my mother did have dementia, but the majority of her confusion and anxiety was coming from delirium - something that can be treated. If we had accepted the initial assessment Mom would have been placed in a secure Alzheimer wing designed for patients in the later stages of dementia. Once the delirium improved, she became less paranoid, less agitated and began to relax and enjoy her environment. Yes, she ended up needing long-term care, but in a regular nursing home with a mixture of Alzheimer and non-Alzheimer patients.

If you find yourself in a similar situation:

What's the first step after your loved one is admitted to the hospital? Hospitals can be a scary place. Your emotions are high, everyone is busy, they're all wearing scrubs and no one meets you at the door, shakes your hand and says, "Hi, I'm in charge of your mother, would you like a cup of tea?" Should you wait around for the doctor to come and talk to you? Who is the boss?

Once admitted, ask who the Team Leader is and find out the name of the doctor in charge of your patient. It might be the next day before the doctor sees your relative. It might be 7am. Leave your questions with the Team Leader and request the doctor phone you. Find out if they are in an acute care bed or an alternate level of care bed. This will give you an idea of what lies ahead.

Speak to your Home Community Care Case Manager. If your loved one has been assessed as "nursing home ready", your worker will assist you through this process. All long-term care placements are arranged through Home and Community Care. You will be asked to choose three long-term care homes (nursing homes) in order of preference. When one opens up you will need to accept it (so choose wisely), but you can remain on the waiting list for your first choice. Unlike years past, you do not need to accept anything else - even if it is available.

If your discharge planner tries to speak to you before the Home and Community Care Case Manager, tell them you can't make any decisions until you've been given all your options. If your patient will be returning to their home after their hospital stay, your case manager will help you create a care plan.

Can the hospital ask you to pay? Yes. If your patient has moved from an acute care bed (focused on medical attention) to an alternate level of care bed (waiting for a nursing home) the hospital can request payment at the same daily fee it would cost to live in a non private long-term care room. (See Elder Care 101).  If you cannot afford to pay this amount, government subsidies are available. No one will be refused care. The hospital cannot force you to pay any more than this amount. If threatened with large daily hospital bills, ask your Home and Community Care Case Manager to give you contact information for the elder advocacy group.

 If you think your loved one's symptoms are different than regular Alzheimer/dementia ask for a Psycho geriatric Assessment. As I mentioned before, my mother's symptoms were so sudden and so bizarre that we believed there was more going on medically than met the eye. Fortunately, someone told me to request a Psycho geriatric Assessment. Although it took few months, this assessment saved the day for us.

What is delirium? Unlike Alzheimer's or dementia, delirium is a mental condition (paranoia, confusion and psychosis) that can be corrected. My mother's delirium came from a mix of physiological causes (dehydration, a bladder infection), side effects to drugs she was given, (sedatives, medications for sleep and depression) and sudden stress (brought on from the sale of her house). Once assessed my mother's medications, routine and diet were changed and within a matter of weeks her symptoms began to diminish.

If your patient has been assessed as needing a secure Alzheimer wing and their behaviour improves, you can request they be re-assessed. (There are fewer long term facilities with secure Alzheimer wings than regular homes. Once the level of care Mom needed was lowered, we had more nursing homes options to choose from). If you believe your patient is being over-medicated keep asking questions about their care - you just might be right.

Be Their Advocate. If your relative is required to stay in the hospital for any length of time, do not assume they are getting certain health care "helps" you might think are common place. It was weeks into my mother's stay before I asked the physiotherapist visiting her room mate what physiotherapy my mother was getting. It turns out she wasn't get any! Once I asked (and that's all I had to do) for her to be assigned to a physiotherapist, she began getting regular daily walks and mini work outs in the exercise room. You have to be their advocate!

You don't have to be rude to be assertive. During mom's stays at both hospitals I was amazed at the quality of care and how helpful and kind all the staff were. Caring for people is hard work. Be nice. Never, never, never mistake being a jerk for being an advocate! Be persistent, be firm but always be respectful. It will be difficult for a nurse to love your mother if she hates your guts.

Feel free to email me with specific questions. We're all in this together. Let's help each other.