Late-Stage Caregiving

Jan 28, 2022 | Caregivers

It can be difficult to think about the end of life, but as a caregiver, planning ensures that the best support and comfort is provided to your loved one throughout late-stage dementia and the end-of-life experience. 

Plan as Early as Possible

The best laid-out plan begins with asking the one that you caretake what their final wishes are:

  • What medical treatments do they want?
  • What do they not want?

Due to the progressive nature of dementia, it is important to ask these questions as soon as possible after the condition is diagnosed. 

Early on, have your loved one complete legal documents that designate their health and medical wishes, which are called advanced directives

Discuss and organize these items and services as well: 

  • Ensure the will and other legal and financial documents and plans are in order.
  • Research end-of-life care in your area, such as hospice. Determine what the insurance will cover.
  • Decide on a funeral home and make plans for the service.

Knowing when to have these measures in place, such as hospice, can be difficult.

The end of life is different for every person with dementia.

It is impossible to accurately predict the duration between the early stages of dementia and what is considered late stage, and ultimately the end of life.

Much depends upon the age of the person with dementia, the type of dementia, as well as the presence of other life-limiting health issues (such as diabetes, heart disease, or cancer). 

Involve your loved one’s doctor in the planning.

The doctor will provide a timeline from a professional perspective, which will help you to get the needed coverage and services lined up that ultimately provide the most comfort and peace in an end-of-life setting that your loved one prefers. 

Related: If you are looking for resources on planning for general care for your loved one, our Planning for Long-Term Care blog library may be helpful.

What to Expect: Advanced Dementia and End of Life

Dementia progression is unpredictable.

For months, and sometimes years, the symptoms of dementia in a person might progress slowly until the final stage.

Sudden changes in dementia symptoms, seemingly overnight, are also very common.

But, as the end of life approaches, the deterioration of the body and mind takes on a common and marked process.

This process includes:

  • Loss of physical abilities. Inability to move around one’s room. Loss of ability to walk, bathe, dress, or feed oneself. Confinement to a chair or a bed. 
  • Sleeping more. Feeling fatigued despite getting more rest or sleep. 
  • Increased difficulty with communication. 
  • Problems with eating and swallowing. Forgetting how to eat. 
  • Increased agitation and anxiety. 

These signs of deterioration lead to the last stages when the person with dementia is:

  • Unable to swallow (or does not want to eat) and loses weight rapidly. 
  • In pain or discomfort. Develops sores from sitting or lying in the same position due to the inability to change positions.  
  • Unable to communicate or speak. May, or may not understand what is being said, or what is happening in their environment.
  • Having fever, infections, or having difficulty breathing. This is typically due to a compromised immune system, dehydration, and pneumonia that has set in. 

When to Transition to End of Life Care

When your loved one shows the progression of late-stage dementia, it is time to consider and follow your loved one’s wishes, and this includes end-of-life care, which addresses their physical comfort, daily care, environmental needs, and emotional and spiritual needs during the final stages.

The doctor’s involvement at this point is crucial.

He or she will advise when it is time to discontinue any or all dementia medications, and when to shift the focus primarily to pain relief and comfort.

At this point, any ensuing care, such as hospice, should be coordinated between the doctor, nurses, home health aides, and yourself. 

End-of-life care should begin before the last days or hours of a person’s life – before the actual dying process.

It can last for a few days or weeks, and for some, it can continue for months.

The focus during this stage is that your loved one completes their life with peace and contentment. 

Comfort from each member of your support team should continue through the entire end-of-life process – up to the moment of death.

When a person is dying, hunger and thirst are the first senses that go, followed by speech, and then vision.

Hearing and touch are the last senses to go, and much comfort can be provided through gentle touch and speech – even if a person is in an unresponsive state. 

We Are Here to Help

We know that planning for the end of life can be upsetting and overwhelming for those of us that caretake our loved ones with dementia.

We do not want you to feel alone in this journey.

We know that you want the best care for your loved one and that every moment matters, and here at Sundara caring is what matters.

Memory care is all we do…and we are really good at it. 

If you have any questions, we can help!

We do provide end-of-life care with the assistance of hospice.

Contact us online, schedule a virtual tour online or call us at 512-399-5080.