Peace of Mind for Seniors - Personal Stories

Personal Stories

Every topic area on Peace of Mind comes from our family's personal need of information. First it was for our mother who had congestive heart failure who needed to be placed in a care facility (see "Navigating the System" story below). Mom died before she got to the care facility, and I took over the role of looking out for her sister (also a senior).

We've been looking out for my Aunt for the past eight years - from helping get groceries to her house to bringing in home help, to moving her to a retirement living place, to moving her to an intermediate care facility. It's been quite a ride - as many of you will know.

The following stories are just a few of my experiences.

Diane - Webmaster, Peace of Mind

Fire Alarms/Drills in a Care Facility

In September I arrived at my Aunt's care facility at the same time their fire alarm was going off. The staff were all gathered in the front lobby, the firemen arrived and checked out the place (all was okay) and I was then able to leave the lobby and go visit my Aunt.

I was the first one to enter the resident area, and noticed a few things: the regular group of residents were gathered in the common room watching TV, no staff around. I went through a few sets of closed fire doors (no staff was around), noticed that some of the residents were in their rooms with their doors open, while other doors were closed, and finally arrived at my Aunt's room. I asked her if someone had come by to tell her to stay put, or what were her instructions? She said noone had given her any instructions.

I was concerned that no staff were with the residents. They were all in the front lobby during the fire alarm. I wondered what would happen to a senior who needed help (if they'd fallen or something) - regardless if there was a fire or not - since there was no staff around.

When I got home I phoned the area Fire Department. I was told that because of mobility issues, it is safer for residents to stay put. That if there was a fire, the fire crew were the best able to get the residents to a safe place. Okay, that made me feel somewhat better, but... shouldn't there be at least one staff member around that the residents can call for if they need some kind of help? Like a floor warden or something? Remember, there were several sets of closed fire doors that I went through. It was at least 30 minutes before the staff were "allowed" back into the facility. The Fire Marshall couldn't answer that question. Apparently each facility has a "emergency plan" (in order to get their license) - and that it is basically an honour system that the plan is in place, used, and suitable for that facility.

I don't think the residents should be on their own while it is determined if an "emergency" is real or not. I tell this story so that others are aware.

The Fire Marshall did say that when a fire alarm went off in a hospital - it was still business as usual (they can't stop a surgery in progress, etc) - and I responded with - at least the staff was still around for the patients...

Since the fire alarm episode, this facility now has a visitor sign-in, sign-out sheet in the lobby. A great idea in the event there really is an emergency!

Diane

Is There a Doctor in the House?

My Aunt is living in an up-scale private care facility - paying close to $6,000.00/month. I mention this because you would think that the more money you pay, the better the care. Right? Read on.

Not long ago my Aunt was sick. Coughing hard and long enough to have her chest/ribs hurt. This went on for about three weeks. Both she and I assumed that she was okay (just a cough) - as she was living in a care facility with care staff and nurses around - and that if she was REALLY sick, someone would call a doctor... wouldn't they?

After three weeks of listening to her cough and complain of a sore chest, I decided to call her doctor. He came, administered some antibiotics and said she had Pneumonia!!! Boy did I ever feel bad about not calling her doctor sooner!

Then I got to thinking, why didn't the care staff phone a doctor? Didn't they see she was sick?

I was given the answer that they were monitoring her and that a resident's condition can get rapidly worse - and that is what must have happened. I argued with them and said this wasn't true, as she'd been coughing and complaining of a sore chest for at least two weeks (giving them the benefit of doubt for the first week).

So this experiene got me asking myself two questions: Is there a doctor in the house? and So what happens if someone is sick? Here's what I found out:

Is there a doctor in the house?

No. Care facilities do not generally staff doctors. Each residents's own doctor would continue to take care of them (you make an appointment, you go see the doctor, or if you are lucky, the doctor will come to you). The facility staff might call the resident's doctor on their behalf, but that is not guaranteed.

So what happens if I am sick?

Hopefully you will have an advocate "on the outside" that will notice something isn't "quite right," and will make the arrangements for you to see your doctor. Don't assume you're not "sick enough" to see a doctor because the facility staff haven't called someone. If you are sick, ask the facility staff to call your doctor (if you are unable to call him/her yourself).

I wonder if my aunt's Pneumonia would have had deadly consequences if I hadn't intervened. Diane

The moral of this story: "Be Prepared"

One Sunday, I had the opportunity to help a senior. She had fallen in her home and couldn't get up. She phoned her best friend (my Aunt), who phoned me to see if I could help. My husband and I drove to the lady's house. As she'd reported, we found her laying on the floor by the phone, unable to get herself up. We helped her up, made sure she was okay, gave her a cup of tea and made her dinner.

During our time with her we asked (and looked for) emergency phone numbers; people we could call to let them know what had happened. We couldn't find any, and the lady was vague in her answers to our questions. Turns out the lady suffers from dementia, and although this story has a happy ending, there are some things we can all do to make an emergency situation like this easier:

• Prepare a list of contact phone numbers and other important information that someone coming to your aid would find helpful. Some of the information will be obvious to anyone familiar with your situation; people not familiar with your situation will be able to use the information to get you the help you need. Download an example Emergency Contact list here.

• Give this list to each of the contact people on that list.

• Have a key to the home in an accessible location that is known by you and the contact people.

This lady chose not to call 911, and as it turned out, she didn't need emergency medical care. There are community services specifically set up to deal with these kinds of non-life-threatening situations - one such service is called LifeLine. We will try to convince this lady of the benefits of a "lifeline" - and in the meantime, we are putting together her emergency contact list to be taped onto her refrigerator and given to her best friend.

As a follow-up, I called BC's Ambulance Service and asked if a person would phone 911 in these kinds of situations - the answer was yes - that they would send somebody to help. The level of help sent would depend on the circumstances.

Diane

Navigating the "System"

Continuing Care

The following represents information I discovered/was told during my mother's continuing care assessment. It is included here to give you an idea of the process - what was good and what wasn't.

The Assessment

The assessment consisted of a Registered Nurse interviewing my mom and myself. A comprehensive medical history was taken; recording a list of current medications prescribed, and a verbal test which included counting backwards from 100 by 7's (I couldn't do it). It is very important that a family member or friend is present at the assessment - someone that can relate the big medical/needs picture to the assessor. It is inevitable that the client being assessed will try to minimize their disabilities - (who wants to broadcast that they can't cope anymore?). Body language and facial expression can go a long way in telling the assessor what the client is saying is true or not (thereby keeping the client's dignity, but getting the message across). If you are in doubt that the assessor understands the true situation, talk with them privately.

One advantage we as a family had, was being able to discuss mom's medical situation with her, clearly and openly. I did not have to "go behind her back" to bring up relevant points to medical staff. I made it a mission of mine that there were no plans, conversations, etc. that pertained to mom that she didn't already know about. She also knew that she wouldn't be able to downplay her needs either - that a family member would correct her if necessary.

DO NOT ASSUME THE ASSESSOR KNOWS THE HISTORY OF YOUR CONDITION!

During the assessment process we discovered that the assessor didn't know anything about mom's medical history. We were under the impression that each of the social workers and other agencies that had mom as a "case" talked to each other. NOT TRUE! Be prepared. Keep a diary.

Watch out for the run-around when one agency takes ownership of the client (in our case incorrectly); therefore the required agency couldn't interfere until the other agency let go.

FOCUS ON YOURSELF - DO NOT WORRY THAT OTHERS NEED THE SERVICES MORE THAN YOU DO!

During an assessment, you may be told that others are in more dire need of services than you are. For example: we were told of the lady who was completely bed ridden, therefore her needs would come before ours. Yes, it is sad that there are only so many resources to go around, but concentrate on your needs. Don't get lured into thinking you are asking for too much (giving the impression your needs would take away from the real needy). You are entitled to help! It is NOT your fault the agencies are strapped for funds, staff, etc.

Once you have been assessed, and allotted hours for outside help, a community agency that can perform these services will be in touch. These community agencies are hired by the government to perform home care services. Although they are nonprofit organizations, they are paid workers, NOT volunteers. The agency will come to the client and describe the services they are allowed to offer. What level you were assessed at will depend on what they can offer.

Here again, you must think of yourself first. They will try and lure you into thinking you don't really need their services at the time of day you want them - for example: could they come at 2:00? (because there isn't enough staff to go around in the morning) and the lady down the street is bed ridden until they come... What they are saying is that it's okay for you to wait until 2:00 to get help with dressing because they are short staffed. Again, it is NOT your fault they don't have enough staff. Accept only what is acceptable to you. They are getting paid to provide help for your care.

When one agency doesn't work out (reliability, personalities, etc) then ask for another. You do not have to take the first agency offered. We "fired" one agency when they failed to keep appointments.

The end of the story. Can you imagine what it must be like for an ill person to navigate this system by themselves? Without help from friends or family?

Not only do you and your loved one have to cope with long term illness, you also have to cope with this maze of "helpful" agencies.

Diane

Peace of Mind - Caring for Seniors at Home