Choices
Choices -We make hundreds of them everyday – some important some not. Will we have fish for supper or pork chops? Do we need to stop for gas or can we wait until tomorrow? Should I quit my job – the stress is making me sick – or hang in there a little longer? Should I buy a lottery ticket ? Burgundy paint with white trim or coffee paint with cream colored trim for the dining room? Do I want to sign a “Do Not Resuscitate” form or do I want heroic measures taken should something life threatening happen to me?
I drive a Prius. I used to drive a Lexus and before that a Chrysler mini-van. When I was in my 20’s I had a little Chevy Vega. When I was first married we only had one car and decided daily who needed to use it most that day. No right or wrong car but the choices here were mostly decided by circumstances in my life at the time. The Prius? I was in a very long distance relationship and putting way too many miles on the Lexus and using way too much gasoline to be ecologically responsible. I continue to drive it because it gets great gas mileage even though I don’t drive the same distances any more. It was a choice. The Lexus? I could finally afford it and I loved the luxury of it, plain and simple. The minivan? I had kids. You get the point – the choices were based on what met certain criteria at the time. The same holds true in choices about our care needs as we age.
A few days ago I spoke about my mother’s changing health care needs. So far we’ve utilized 3 different types of care. Each one met a specific need at a given time. Today and tomorrow I want to talk about the choices that are out there. They are for you to think about today. The time to make a choice for changing life style and changing needs is not in a crisis but NOW when all the parties involved can weigh all the options. As a home care nurse I’ve seen too many people have to make a last minute decision. They get a call from the hospital saying mom is being discharged tomorrow. They didn’t even have time to assimilate that changes were happening much less that serious life choices were going to have to be made on the spot. Where is she going? Living alone 24/7 is no longer an option for someone who has suffered a stroke and has residual paralysis. If she lives in a two story home with all the bedrooms on the second floor will living in that home work at all?
What are the choices? I’m going to list the basics then we can go from there into various scenarios and combinations.
Living at home – care by a family member.
Living at home- private care (hired)
Living at home – minimal assistance to 24/7 care through an agency
Moving in with a family member -temporary or permanent
Senior assisted living with facility to extend into full care environment such as Kendal
Rehabilitation center
Extended care facility
Skilled nursing facility
One might think because of my background as an owner of a home care agency and 25 years of providing home care nursing my suggestion across the board would be “Stay in your own home with an agency providing as much or as little care as you need.” This is not necessarily the case. I have recommended patients who came to my agency for care investigate other options. Home care was not a viable choice for any number of reasons:
1) the house was in such disrepair it was unsafe for the patient and the care giver 2) home was not set up for the care needed and not adaptable – no downstairs bedroom or bath and no room for a bed in any of the downstairs rooms. 3) no payor source – private agency home care is expensive and most insurances do not cover it. 4) socialization needs, therapy/skilled care need that couldn’t be provided in the home 5) house no longer needed or wanted – too big, too expensive to keep up, too far away from family or town, etc.
That being said I AM going to talk about home care first, home care provided by family in the aging or sick family members home, for instance, a son or daughter moving back home to care for Mom, or if not moving back to the family home, spending hours a day there providing care.
Pros: Least expensive
Personalizes the care
Emotional and personal closeness
Close oversight of all medical care, care of the home, etc.
Convenience ( for some)
Cons: Most expensive emotionally and physically
Lack of medical experience or training
Emotional and personal closeness ( this can work both ways)
Feeling of obligation/resentment
Feeling of guilt by patient, feeling of being a burden
No/little respite
It takes a very special person to be a care giver, especially 24 hours a day, 7 days a week. Few of us are equipped to handle it for the long run. A few days or a couple of weeks maybe, but months, years? It wears on you and the person you are caring for, both physically and mentally. Without scheduled relief, hours away from the patient, days off, time with other people, you will suffer burn out and so will the patient.
When I was married, my husband’s mother came to live with us in our home. Her husband had died and she was ill and could not care for herself. She lived several miles away, in the country and the best possible solution was to bring her to live with us. We had a room on the main floor that would become hers. She was a wonderful lady, loving and kind, undemanding. I was working. I knew I could not be the main care provider. We hired aides from my home care agency to care for her during the day. I thought that would be enough. I could still handle the skilled care, medication, doctor communication, pain control, whatever was needed that I could provide as an RN. It didn’t take long to realize I was wrong. The minute I came home I went into nurse mode…..had she eaten? How was her pain? Did her bowels move? How was her urine output? How much did she sleep? How long was she up in the wheelchair? Was her skin breaking down?
Her physical needs were being met. She was pain free. Her prescriptions were filled on time, doctor visits arranged, activity plan for the day being followed. What was missing was our relationship. I missed being her daughter-in-law. We missed visiting with each other, telling about our days and laughing over one adventure or another. I couldn’t do both and still have time for my daughter and husband, and work, either emotionally or physically. We decided I needed to go back to being the daughter. We increased the time our agency aide was there each day to get us through dinner and we enlisted the help of Hospice. They nourished us all. I could come home and visit with her, play the piano if she wanted music, read to her, be family and NOT the one who had to do things physically to her that caused pain or dwelt on her illness. She lived with us until she died. I will never regret having her live in our home with us. But I learned its hard to separate the personal and professional when you are trying to be the care-giver. The stress it put on all of us was not worth the extra it cost us to hire help when we finally realized it wasn’t working.
I’m not saying this option will not work. You have to be prepared to step back however if it doesn’t. You have to have a support system in place and you have to take care of yourself with regular time away. You have to learn to not feel guilty or resentful if for any reason it doesn’t work.
The other home care option is using a home care agency. There are many great agencies around. There are also some companies that have no business being in the business. How do you choose the right one? First let me explain there are three kinds of agencies – 1) agencies who are Medicare certified and provide both skilled (Nursing, Physical Therapy, Occupational Therapy, Speech Therapy) and unskilled care, (assistance with bathing, walking, transferring, and other activities of daily living) in the home 2) agencies who only provide unskilled care, the care provided by an aide, cooking, cleaning, some personal care and 3) companion care agencies that provide housekeeping, meals, errands, companionship but no personal care.
Pros: Supervised care by a professional RN
Trained personnel
Initially not the emotional or personal closeness
More than one care giver to help with the care
Agency can provide another care giver if one does not work out or is sick
Does not cause the guilt (patient) that is felt if family is doing the care giving
If there is a skilled need the care may be paid short term by Medicare or Medicaid
Cons: “Stranger” in the home
Initially not the emotional or personal closeness
More than one care giver ( patient has to get used to several different people)
Expense
As you can see some advantages are also disadvantages. Choosing the right agency requires doing your homework. If there is only one thing that is a must it is to choose a Medicare certified agency. There are certain high standards that must be met to be Medicare certified. I would be happy to go into more detail if anyone reading this has more questions about the certification and what it means. Contact me at the email for this site on leave a message.
Go to Home Care.gov on- line and look at the comparison of agencies in your community. It’s a report card and one of the best ways to choose. It rates agencies on outcomes. What percentage of the agency patients needed re-hospitalization, which one showed the best increase in patient mobility and ADL’s, which one showed the most improvement of the patient’s condition overall. It’s an easy comparison chart to read and an unbiased way to get information on the care an agency gives.
If they aren’t listed they most likely aren’t certified.
Always ask if the agency screens, bonds, reference checks and fingerprints all hires. If the answer to any of these questions is no cross them off your list. Ask how long they have been in business,are they local or do employees come from another area, how many employees, how many patients, the name of the person who runs the agency and what are their qualifications. Does that person live locally? Is the company headquarters in another state? When was their last Medicare survey? And last but not least ask about cost. The most expensive is not always the best.
This is a lot of information to absorb. To be continued.