What is Quality of Life?

Do I have quality of life? How do I know if I have quality of life? How much quality do I have? Do I have a right to have quality of life? Will we always have quality of life? Are there different types of quality of life and are they equally effective or valuable. These are important questions to explore and to understand.

The WHO Definition

The WHO defines it as follows: Quality of life (QOL) is “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”

Standard indicators of the quality of life include
 wealthemployment, the environmentphysical and mental healtheducationrecreation and leisure timesocial belongingreligious beliefssafetysecurity and freedom

You perceive your quality of life. So two people might have identical circumstances and one could consider herself having great quality of life, where as the other persons thinks/feels her life is not so great!

Effectively you judge your situation against your expectations. Generally it feels good when you have good quality of life, and it feels good when you have helped someone else have a better quality of life

It can vary in time as circumstances change. I don’t think people living in Ukraine would consider their quality of life as being great at the moment.

Small incremental changes are important. If you have lived in luxury for a while, if suddenly the shower water is not so hot, you would complain. But if you have been homeless getting a shower with water is great.

In general if you can help a person to have a good quality of life is a good thing. How would one go about that?

Starts with Intention

It has to be your intention.

In a recent news release of the ministry of health we read: “As a government, we have learned a lot (from the pandemic) and have also taken crucial steps to making sure residents in LTC homes have the best quality of life possible and are safe. The intention is clear! The minister said that Long-term care residences are people’s homes, that’s where they live.

What about Kiwanis? On the website it states that their “mission is to continuously improve the quality, effectiveness and efficiency of our care”. The intention is there!

Know the Person

Your ability to ensure that a person has good quality of life you need an idea of the things that are important in that person’s life – there is a long list of the softer things in the WHO definition. You basically have to know the person.

When I first moved to Kiwanis I was interviewed and a list compiled of my interests, background, and other fun facts about me. I thought that was a brilliant first step towards understanding my needs and interests. The manager, Dimitra, came and took a photo of me – she would not know this, but I absolutely hate having pictures taken of me, but she explained it was to put on the door so people could learn to recognize me. Great idea!

So, in just these few items I mentioned, Kiwanis has shown they are keen and ready to ensure we who live here have quality of life.

Are there problems?

There definitely are, and that is normal. QOL is not static, you cannot expect the same level of care/service when external circumstances are counterproductive, like during the pandemic or during the economic recession that we have now.

Need for a System

What is important is that you have a system in place to identify problems and to find solutions. It is important that this system be independent of the LTC management, assuming a team of some kind, that they are allowed to meet and investigate without interference and that the activities of the system is transparent and freely available. That is in essence the function that the ministry’s residents and family council as recently defined is to fulfil.

My Example

So in theory I should be able to explain to this council that I had requested kosher food and that it is not implemented satisfactorily. My son should be able to find out if and when the issue was raised, who was assigned to deal with it, what was decided to do about it, and what the current status is. I am probably not the only person in LTC who has requested kosher food, so we should be able to find out if this has been raised as a problem elsewhere and what solution they came up with.

It may sound like a small problem , and it is, which is why I chose it as an example. But it does affect my quality of life in a big way.

The dietician was quick to point our that it was not possible to set up a kosher kitchen here. I understood and accepted that, it did not violate the principles of my faith.

So I do mostly get dishes without pork, seafood, etc. At first they did not realize that bacon was pork and that most commercial soup stock. But the food that I get is often so insipid that I long for some of the non-kosher dishes that my table mates are getting. I am reminded that I have given them extra work by the way they plonk the dish down in front of me (sigh).

So when Passover comes around, I am a nervous wreck – how am I going to explain to them that I did not want any bread, muffins, crumbed chicken etc.! More sleepless nights for me.

I hate it when people do something for me and I cannot show my appreciation. So what if they did not give me matzos – my friends and family looked everywhere but could not find any because of the long supply chain complications.

There are many more issues that arise because of my faith, but that is not the point of this section. I chose these two problem areas to illustrate the need for a system to capture and fix problems as required by the residents and family councils.

Many of the quality of life matters are complex and require more work to implement solutions for. Ongoing training is required.

As the saying goes, you can’t take every cough to the doctor. I believe that being grateful as a way of life goes a long way to experiencing quality of life. We were very poor when I grew up. I got my first pair of shoes when my aunt got married, I was 7 at the time. Yes it was Africa but it got really cold in winter and my feet got cracked all over.

I know the value of things and appreciate all that Kiwanis makes possible for me, I decide to have quality of life or as the EVC guide puts it “living well” with Parkinson’s. I have many health problems that make it difficult to keep that philosophy up but I try.

Christianity General Long Term Care

Importance of Visits

Yesterday I had a visit from mijn mooie zus, Andree – the staff often mention that she is also tall like me but she is pretty – thank you very much! But they are right, she is. I think they are impressed by the style of clothes she wears, very European.

And also Gerda came to visit, and as we are both followers of Jesus, she is my sister in that sense. She brought some flowers – I love flowers.

My older sister is married and living in Johannesburg, also called Joburg or Jozi by locals. She visit me via WhatsApp, thank goodness for technology.

It is wonderful that all of us are followers of Jesus and are looking forward to his return.

A Hostile World

Of course it is not intended to be that but a care home is a hostile world for the residents. Your life is regimented, you are constantly told, ordered or shouted at to this or the other by girls who don’t speak any our your languages by staff, who are no more than giggling girls.

I was going down the hallway for example when a number of these girls were giggling about my name and wanted know what it means. I clarified that my name is actually Johanna Adelheide, and that Heidi is the common contraction/contraction of Adelheide which meaning of royal or noble kind. Johanna means God is gracious. My oldest son is called Johann, a derivative.

Johanna Louise Spyri

Johanna Louise Spyri 

As a child, “Heidi”, a novel by Johanna Louise Spyri was my favorite. Due unfortunate circumstances Heidi is forced to live with her Grandfather high up in the Swiss mountains. She was an inspiration for me and like her I grew to love the wise grandfather.

In German my name is pronounced as HighD but in local dialects and the lowlands it is pronounces Hay Dee.

So my name and what it stands for, is precious to me and to have giggling girls make fun of it hurtful and it would be considered a grave disrespect where I grew up. I took them to task in a light-hearted manner as I know they don’t understand. I reminded the care aid in charge on several occasions since then that it is important to be respectful.

So that is just one personal example of how a care facility can be a hostile place. We represent a wide range of people of different ages, personalities, cultures and believe systems and the system does not understand your specific needs. So we get hurt emotionally continuously, mostly out of ignorance and not intentionally – however tolerance and compassion is becoming a thing of the past, if social media is anything to go by. It is indeed a hostile place.

A Balm to the Soul

When one is living in a hostile environment, one is constantly on the defense, not knowing what hurt, put down, offence one is going to endure next. Your body is fragile, your energy reserves are depleted.

Then when you get visitors, people you know, love and trust, then it is like a balm to your soul.
I know it is not always convenient, and masks and testing is unpleasant.

Please do know how grateful I am for all such visits, and that after the long Covid restrictions that it is again possible to have visitors.