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A son and daughter share their experience of having a parent diagnosed with dementia

A dementia diagnosis affects the whole family, not just the patient; family members of a Livewell resident speak out about what they have experienced.
A son and daughter share their experience of having a parent diagnosed with dementia

Learning that a family member has been diagnosed with dementia or Alzheimer’s disease affects the entire family immensely. It can cause a range of emotions, including anger, fear, frustration and sadness. There will be a whirlwind of frenzied research to better understand your situation, as well as a rollercoaster of emotions as you all try to absorb the reality of it all. It also forces you to think inwardly about the possibility of being in this same situation yourself, and you may be concerned that you too will one day get a similar diagnosis.

Ultimately, as a family, you will arrive at the point where some major decisions need to be made about your loved one’s care and treatment. These decisions can bring with them another wave of emotions and situations to deal with, such as guilt, confusion and even conflict among family members. It is a huge adjustment, and these are important decisions that are not taken lightly.

We spoke to siblings whose mother is a resident at Livewell. We wanted to find out more about their journey, from the diagnosis of their loved one, their personal experiences, to the decisions they had to make for their future as a family.

Feelings of powerlessness but also of gratitude

When a loved one, especially a parent, is diagnosed with dementia, it sends the family on a journey of emotions that can ebb and flow for years over the course of the disease.

We asked the family of our resident how they felt when they heard their mother was diagnosed; they confided that they felt cheated, unhappy, worried, uncertain, angry, in denial, fearful and powerless. But despite these initial negative feelings, they were also still able to focus on the life they had had with their loved one up until that point, and also the life lessons they were learning and about to learn.

Learning that someone you love has an illness like dementia is only the first step, families have to prepare themselves for the months or years ahead of watching as their loved one slowly progresses in their disease. These siblings opened up about how this felt for them: “It is very painful seeing her – she is only the outer shell of the intellectual, loving, caring, tender, selfless and special person that she once was. I cannot begin to even remotely comprehend the anguish, fear and torment that she must endure during lucid intervals.”

This son and daughter balance their sadness and fear of what the disease would bring to their loved one and family with the wonderful memories they had made. They were also seeing this opportunity to care for their mother as their chance to return the favour. Many of the relatives whose loved ones are in our care are mothers and fathers who dedicated their lives to their children’s care.

Upon being asked what their mother’s dementia had taught them, they responded that it made them want to “not take anything for granted, to value and treasure past and present moments”. This is very important, as for many of our dementia patients they only really live in the moment as their treasured memories have been lost to them.

Deciding what is best for my loved one

By the time someone with dementia is diagnosed, they are most often not able to make the monumental decision of what kind of care they should be getting. So in most cases, this decision lies squarely in the hands of their family members. This is an enormous undertaking, and many are wracked with guilt and overwhelmed with the sense of responsibility.

They also shared how they navigated their feelings of guilt to continue to make the right decisions for their mother, and it was clear that these were very complex emotions that took their toll on the whole family.

“I will never conclusively deal with the constant guilt. I have to believe that my family, which consists of a father, sister and a daughter, might be able to forgive me one day for having my mother removed from the hearth and harmony that she had created in her household when her condition got worse.”

We understand that this might be your toughest journey yet to endure as a family, which is why we are here at your side to help you. We asked the family if they would share their personal experience of choosing to move their mother to Livewell, and they responded with this honest observation:

“I personally was not emotionally equipped to properly manage, let alone maintain, the challenges [that came with my mother’s dementia] and I also did not want her husband (my father) to witness the worsening deterioration first hand. There is no panacea or textbook on how to deal with experiencing dementia. Acts of kindness towards the patient is about all we can do to vaguely ameliorate the illness.”

Wherever you are in your journey with your loved one’s diagnosis, speak to one of our Family Advisors who are trained to help families like yours navigate this difficult process.

17 Jul 2020 10:31