Entering a nursing home is a life-changing experience. How can we help our loved ones cope with everyday life in a care home, how can we support the sick and accompany them with dignity on their last journey, the dying process? Experiences of a professional caregiver …
An insight into the everyday life of care home residents in their autumn days
Being a companion for the painful process of letting go
Respectful interaction at the end of life
A homage to the many dear people that I have been able to accompany on their last journey over the years.
I would like to thank the countless people who have allowed me to accompany them on their last journey into another dimension and with some even up to their physical death.
Before I trained as a dying companion, I had, over a period of ten years, accompanied four loved family members and a friend as they approached their death.
When I think back to these journeys, I often wish that I knew back then what I now know about terminal and palliative care. I would have dealt more professionally with the approaching signs of death. Instead, back then, I felt quite helpless and at a loss.
These private dying experiences made me want to delve deeper into this subject. They showed me, that I was missing important practical information for a better grasp and understanding.
These experiences laid the foundation for starting a three-year training course to become a death and grief counsellor.
During my training I came across an advertisement: “Voluntary companion to the dying wanted” So began my work as a death and grief counsellor to the dying in a nursing home.
In the last ten years, through this work I have got to know and appreciate many different, wonderful, loving, grateful and sometimes challenging elderly people.
I was allowed to accompany some of them not only during their everyday lives in a care home, but also in their last days, up to their death.
Some time ago I received an unexpected request from a publisher as to whether I would like to write a book about my experiences as a dying companion and grief counsellor. After initially being astonished, I was fascinated by this idea.
I decided to write a guide in which I describe my work as a death and grief counsellor in a nursing home as well as report on everyday life in the care home with all its facets and address a taboo topic, the dying process.
I thought hard about which topics would interest or be of help to a wider audience.
The book focuses on the situation of people who, voluntarily or forced by external circumstances, enter a care institution, and spend the rest of their days there until they die.
In this guide, I also pay close attention to the relatives, as the terminal care of a loved one is often an unknown and frightening time for them.
I am aware, that for a large part of the population the subject of illness, entering a care home and dying is a taboo subject, but dying affects us all.
With this guide I would like to give you an insight into the practical side of the dying process and show you how you can calmly accompany and support your loved ones in this difficult and emotional phase for you both.
Whether they like it or not, many people will need to consider whether their loved ones must go into a nursing home.
It is too tempting to avoid considering the realities of life in a nursing home and how illnesses progress, the dying process and palliative care.
However, it is important to deal with these realities early because you never know when and what will happen to you in life, and death is part of life.
Like many people, I was forced to deal with this topic when my mother became seriously ill.
Part 1 - Entering a care home
1.1 Challenge or relief?
Unfortunately, it is not uncommon for an elderly person to be admitted to a care facility after a medical emergency, without ever being able to enter their own home again and return to their old way of life.
This is a challenging situation and does not make it easy for those affected, to get used to the idea, that the nursing home will now be their home and their future life.
Most people are in denial about the possibility of a stay in a nursing home. They tell themselves that it will never be necessary, which is not always the case.
According to the BFS (the Swiss Federal Statistical Office), only around 15% of people over 80 live in a nursing home. The others are still independent or take advantage of other options. Nevertheless, you can never know in advance whether a care home may be necessary in your circumstances and so it is wise to consider care home options ahead of time, rather than be rushed in an emergency. This allows the home to be considered calmly and carefully.
Entering a nursing home is a big step and a huge challenge, not only for those affected, but also for their relatives.
Life, which up to now has taken place in one’s own home with a lot of freedom and independence, is now reduced to a room, that may have to be shared depending on the financial situation. What does this mean in concrete terms? I will go into this in more details in Sections 1.5 and 1.6.
For some people, however, entering a care institution is a great relief, especially when it has been a struggle to meet day to day needs at home. Housework, cooking, shopping, organising etc are no longer necessary. Instead, depending on their state of health, a care home resident can gain new freedoms. Energy can be used for everyday activities such as walking, playing, reading, doing handicrafts, etc. Not to mention the healthcare and personal security and safety benefits. Support takes place around the clock! If necessary, a healthcare specialist can always be called in.
The relief is often noticeable in the relatives too, initially mixed with concern about how their loved ones will settle in.
To gently accustom the elderly to life in a care home, many homes offer respite stays. This can reduce acute fears or mitigate possible shock.
1.2 Involuntary care home admission
Where nursing home admission has been determined by others
As a result of accident or illness, many elderly people suddenly become unable to find their way mentally and physically. The situation may change very abruptly, possibly starting with a short or longer hospital stay, after which it may be clear that they are no longer able to return to living in their own home.
There will not have been the time to prepare mentally for entering a care home and a new life situation. The decision is thrust upon them with no time to adjust and perhaps without the patient being able to participate in the decision-making process.
There are various reasons that make it impossible for an elderly, sick person to be able to live at home again after a stay in hospital, eg; that they live alone or the health of their partner.
I will illustrate this to you using the example of my mother’s illness:
My mother lived alone in an apartment. She kept feeling tired for many months. It got so bad that she couldn’t get out of bed. I worked and did not live near her. Her neighbour called for the doctor and he referred her directly to the hospital. I visited my mother every day, while she was in hospital.
After a week my mother was told that she could go home several days later with home care support. I moved her room to the lower floor and was happy about this good news.
Two days later, the doctor told me that my mother’s condition was worsening. She said that my mother would have to go to an old people’s home. That same day I looked for a place and confirmed my mother’s admission there.
The next day, the doctor explained to me that my mother’s deteriorating condition now made it necessary to look for a place in a nursing home.
I was devastated. Functioning like a robot, I looked for a nursing home. At that point in time, I couldn’t fully grasp what had just happened. It was unreal.
My mother would have to go to a care home without being able to participate in the decision-making process, she had no choice.
Residents told me that they had a lot of trouble not being able to slowly say goodbye to their own home and their old life. They found it difficult making decisions such as:
How do I give up my apartment? Whom do I give things to? Who will take care of my pet? What do I want to take with me to the nursing home that is close to my heart and important to me? What clothes do I take with me?
Up until now, the patient had full control over their life and decisions such as these.
If relatives or strangers make these decisions without fully involving the resident, they feel powerless, and it might trigger a great sadness and loss of dignity.
Sometimes the residents only notice much later that they are still missing a special piece of jewellery, a photo album, a certain book, or an item of clothing that they particularly like.
It is understandable if this causes frustration, resentment or sadness.
Careful, understanding interaction with a professional, relatives or nursing staff sometimes works wonders!
Alternatively, it may be that a care home admission is necessary because the patient’s partner is overwhelmed by the care needs. Often it is not only the partner who is overwhelmed, but also the adult children who may not realise the level of care now required.
I would like to use two examples to show you that adult children cannot always judge or see exactly how their parents are coping, and whether they are still able to continue living independently at home without help.
As these two examples illustrate perception and reality may differ.