Mindful Dementia Stories serves a community whose loved ones are battling dementia. Globally, 44 million people are battling a form of dementia. Over 100 million are their caregivers. In the United States 500,000 lives were lost to Alzheimer’s last year. Over 5 million Americans are fighting Alzheimer’s. 15 million Americans are their caregivers.
Caregivers are responsible for their own and their loved one’s well-being. Regardless of living arrangements , dementia takes its toll. The journey should be loving and happy despite the disease. There are many challenges along the way. It’s not possible to list all of the challenges. However, some of your challenges may be:
Seeking a diagnosis
Having memory and thinking problems?
This does not mean you have an incurable disease like Alzheimer’s. Some conditions that cause dementia like symptoms are treatable. Thyroid disease, vitamin deficiencies and depression may be reversible.
The diagnosis process
Speak with your Doctor. He will want:
- A full medical history
- A physical exam including difficulties with everyday tasks
- A family history of medical conditions
- A current list of medical conditions and medications
- Your Employment and marital status
- A Mini Mental State Exam -Assess memory, problem, solving skills and counting ability
- Blood tests
You may be referred to a neurologist and psychiatrist for:
- Neurological exam
- CAT scan
- Neuropsychological Testing to assess the brain and its relationship to behavior.
There is no definitive diagnosis until autopsy. Doctors can make a diagnosis that is 90% accurate.
What legal, financial and medical documents are needed to protect both you and your loved one?
The sooner diagnosed with a progressive dementia related disease the better. You want your loved one to participate in this process. They must be able to understand their choices and the consequences. Seeing an elder attorney is highly recommended. It is a specialized field. Here is a tool to help you locate one close, These documents protect and ensure your loved ones wishes are honored.
Power Of Attorney (durable – valid even after your loved one is incapacitated).
A person with dementia chooses someone they trust. They make financial and other decisions on their behalf. A secondary person should be appointed in case the primary individual is unavailable when needed.
Power Of Attorney for health care also known as Advanced directive.
A person with dementia chooses someone they trust. This person will act on their behalf upon incapacitation . They will be responsible for their healthcare decisions. Thesedecisions include doctors, treatments and who cares for them.They must honor end-of-life care choices. This includes nutrition and DNR if stated.
Living Will ( Advanced directive )
The person with dementia makes decisions on artificial life support. It may state their wishes of treatment regarding life-Sustaining treatment
The person with dementia chooses the Executor to manage their estate. Beneficiaries are named to receive assets. The will is active only when the person dies.
The person with dementia chooses someone they trust or an institution-bank. They are responsible to manage their property . A secondary person should be appointed. If the primary individual is unavailable they become responsible.
Guardianship / conservatorship
This is not common. This occurs when families cannot agree about financial or legal decisions. The person with dementia is determined legally incapacitated. The court will appoint a guardian or conservator. They make decisions about care and custody. They have authority over medical, financial and property decisions.
No medications will prevent, slow the progression or cure the disease. They can help with symptoms. Dementia patients suffer hallucinations , anxiety, depression and sleep difficulty. Medications can help but have side effects. Everyone reacts differently. The process is trial and error.
Some doctors over medicate trying to fix the unfixable.
- Your loved one is taking too many drugs.
- They may be sleeping all the time.
- Combative behavior may arise.
- They end up in a geriatric psych ward for a medication evaluation.
You put your trust in the professionals hands. In trying to help they can do more harm than good. Nobody knows your loved one better than you. It’s important you have a good rapport with their doctor. If not change. In many cases less is more. There are other options, such as engagement. Music can calm your loved one. Activities occupy and help them sleep. A consistent schedule contributes to a better lifestyle.
Medications do have their place. Decide if the benefits outweigh the risks. Finding the right balance is key. Medication management is a most difficult challenge. Work with the Doctor. . When something changes discuss it. Create a balanced care plan. Together you can help your loved one live the best lifestyle they can.
There are seven stages of grief. Caregivers experience three types of grief. Within each type they experience these stages.
Shock or Disbelief
The loss is so great you become numb. You do not feel anything. Shock is a form
of emotional protection.
The inability to share emotions after a devastating loss. When asked how you are you say fine. You are unable to share your feelings with those closest to you.
Feelings of anger arise. You may be angry with yourself or your loved one. You are mad that you are left alone
You attempt to make a deal with God to change what has happened.
Feelings of regret set in. You want to go back in time. You want a chance to change your last conversations.
You have feelings of profound sadness. You have no control over them.
Acceptance and Hope
You understand things will never be the same after loss. There is hope that life goes on.
Three Types of Grief
Caregivers lose A part of their loved one every day. They watch someone they love disappear before their eyes With each loss they go through the grieving process. Caregivers are in a constant state of grief.
Caregivers know that their loved one is terminal. The end is approaching.
Caregivers anticipate life without their loved one. Grief sets in.
Your loved one has passed away. You are grieving the loss.
You experience the seven stages of grief.
Everyone grieves in their own way in their own time. It’s important that you go through these stages to heal. If you are falling too deep ask for help. Speak to you doctor, your spiritual advisor or a grief counselor. They can help you get through these most difficult times.
These are a few examples of challenges faced with dementia Planning and understanding these are important. The better prepared you are the lesser these challenges will be.