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Moving on from Dementia: finding peace post-diagnosis

Moving on from Dementia: finding peace post-diagnosis



Taking care of a loved one who has been diagnosed with Dementia is an overwhelming process; many people experience a period of deep-felt grief, with feelings of confusion, disbelief, and profound sadness. Caregiving can be a long, stressful, and intensely emotional journey. There are moments where both the loved one and their primary caregiver feel demoralized or angry with the condition and the diagnosis. Since there is no cure for Dementia, caregiving and support often make the most significant difference to the loved one’s life, allowing them to be at peace with how and where their lives are progressing. 

To make sure the loved one with Dementia is at peace, there is a strong need for the caregiver to be at ease. Thus, caregivers must rest when they can and prioritize the work they have in their life. Keeping the day as structured and expected as possible, the surroundings clean, and tasks simple will help bring a sense of normalcy to both the caregiver and their loved one. As the loved one’s cognitive, physical, and functional abilities progressively diminish over time, it’s okay to be overwhelmed and disheartened. It is noticed that such emotions often lead to people neglecting their health and well-being. 

 

Post diagnostic struggles 

Caregivers may have difficulty sleeping due to worrying over their loved one’s needs; hypervigilance within caregivers is thus very common. However, in the long run, this leads to emotional and physical exhaustion. The weight of all of these responsibilities can cause even the most committed caregivers to experience stress, resentment, anger, frustration, and even depression. While the shock of the diagnosis can be paralyzing, caregivers and family members must be gentle and sympathetic with themselves. They must allow themselves to move through the grieving process towards a path of treatment and peace. 

Throughout this illness, the person with Dementia will undergo many changes in their behavior and attitude, many of which are not pleasant; in these moments, it is easier to give up hope for the future and go back to reminiscing about the time before the diagnosis. While revisiting the past is a temporary balm on a wounded soul, it is not something that you could share with your loved one. Having to keep things from them, lie to them, and in many cases, have your relationship with them questioned can produce an emotional storm of uncertainty, disappointment, and grief for caregivers and their loved ones.

Making peace with the diagnosis 

Communication with the family is crucial to be at peace with the diagnosis and help your loved one move along with their life. 

As your loved one’s dementia progresses, you’ll be able to mark changes in how they interact. They may show trouble finding words, substituting one word for another, repeating the same things over and over again, or getting confused with daily tasks. Encouraging social interaction despite these difficulties is essential to promote a positive environment while making them feel safe rather than stressed. Similar to these changes in communication, there may be changes in their personality as well. These behaviors include aggressiveness, wandering, hallucinations, and eating complexities that can be distressing to observe and make your position as a caregiver even more difficult. 

Within these moments, it is often a possibility that one might find this to be a never-ending struggle, and the idea of peace might seem unattainable. However, there are ways in which, in these moments, both the caregiver and the loved one can try to be at peace and help each other move along.

 

To the loved one diagnosed;

Be kind to yourself through the process. Dementia is not your weakness, and there’s no reason to criticize yourself. With time, you can work through the shock of diagnosis and prepare yourself for the difficulties that lie ahead.

Reaffirm your identity. Having Dementia doesn’t have to define who you are as a person. Pursue the roles that defined your sense of self before the diagnosis, such as spouse, parent, grandparent, friend.

Allow yourself to feel. Unpleasant emotions will exist throughout this process of treatment. By allowing yourself to feel these emotions, the shock and anxiety will start to disappear, and you’ll be able to see a path forward. 

Adapt your environment.  Keep items you use daily to easily remember places, such as keys on a hook by the door. As your needs change over time, planning and flexibility can help keep you one step ahead.

Stay connected with family and friends. Keeping your most intimate relationships and extending to enjoy these social activities can make a world of difference to your health and attitude. As people age, isolation, relocation, and losing loved ones often narrow the social circles. Still, it’s never too late to make new, essential friendships.

 

For the primary caregiver:

Pursue your favorite hobbies and interests. Engaging in activities that are important to you can help maintain your identity and enhance your life. In the critical period post-diagnosis, caregivers usually give their entire time to care for their loved ones to a point where they cannot individuate themselves. Activities like these help do that and act as stress busters.

Don’t be the sole caregiver: To take care of your health and other commitments. The sooner you build a relief network, the easier the caregiving journey will be. Support could involve help from other family members, trained in-home service, or respite care.

 

With the advancement of the illness, the needs of the loved one rise as well. The financial, emotional, and physical strain of caregiving increases; Simultaneously, it is normal to feel tired and stressed, and unappreciated. The key here is to remember that there is hope beyond the illness.  

EXPLAINER 

Caregiving can be a long, stressful, and intensely emotional journey. There are moments where both your loved one and you as their primary caregiver may feel demoralized or angry with the condition and the diagnosis. Taking care of the post-diagnosis then is an overwhelming process. You may feel a period of deep-felt grief, with feelings of confusion, disbelief, and profound sadness.

pause 

Communication with the family is crucial to be at peace with the diagnosis and help your loved one move along with their life. 

As your loved one’s dementia progresses, you’ll be able to mark changes in how they communicate. They may show trouble finding words, replacing one word for another, repeating the same things over and over again, or getting confused with everyday tasks. Promoting social interaction despite these difficulties is essential to develop a positive environment while making them feel safe rather than stressed. 

pause

Within these moments, it is often a possibility that you might find this to be a never-ending struggle, and the idea of peace might seem unattainable for now. But there are ways in which, in these moments, both you, the caregiver, and your loved one can try to be at peace and help each other move along.

For your loved one, these might help them move along with their diagnosis

  1. Be kind to yourself through the process.
  2. Allow yourself to feel.
  3. Reaffirm your identity
  4. Adapt your environment.
  5. Stay connected with family and friends.

Excerpt from the blog: Moving on from Dementia: finding peace post-diagnosis

 

SOCIAL MEDIA

post/ story on possible self-administered interventions for people with dementia to do to reaffirm their sense of self

  1. Mindfulness
  2. Expressive art therapy
  3. Social support