September marks World Alzheimer’s Month, a time to raise awareness and challenge the stigma surrounding all forms of dementia. Two out of three people around the world believe there is little to no understanding of dementia within their own countries. The misinformation about dementia is a global problem, one that will need global action, according to Alzheimer’s Disease International. As a caregiver of a loved one with Alzheimer’s, you may be struggling with how to handle their end of life care in Santa Clara and elsewhere.
As those suffering from all forms of dementia reach the end of life, their caregivers are suddenly presented with unique challenges. People can live with diseases like Parkinson’s and Alzheimer’s for many years, so it’s tough to see them as terminal diseases. Yet, they are.
Making Those Difficult End-of-Life Decisions
Dementia spurs the gradual loss of remembering, thinking, and reasoning abilities, making it challenging for caregivers to know what kind of support is needed for them. Those with advanced dementia can’t communicate clearly, share their concerns, or express themselves in any type of meaningful way.
As their condition progresses, their caregivers start to find it difficult to offer the spiritual and emotional comfort necessary. How can you let your mom know how much she has meant to you all these years? Or your spouse how much you love them and cherish them for the life they have shared with you? If they no longer know who you are, how can they respond?
Sensory connections in these cases may bring comfort. It can be very soothing to be touched or massaged. Put on some music, white noise, or nature sounds which may help your loved one relax and become less agitated, suggests the National Institute on Aging.
When Alzheimer’s disease is first diagnosed, a plan can be made for the end of life, as long as everyone understands there is no cure and that their loved one will decline in thinking and speaking abilities with no capacity to complete legal documents such as advance directives.
These decisions are made substantially more difficult if the patient has not expressed what kind of care they prefer. And someone who has been newly diagnosed with Alzheimer’s disease can’t, understandably, imagine what the later stages of the disease will look like and how it will affect them. They may be in denial.
Maintaining Quality of Life
Always consider the quality of life before making critical healthcare decisions for loved ones with dementia. Take medication, for example. Some kinds may keep symptoms from becoming worse for a short period of time. Others can control certain behavioral symptoms in those with mild-to-moderate Alzheimer’s disease.
Some caregivers may not want doctors to prescribe medication for their loved ones going through the late stages of Alzheimer’s, believing their quality of life is already at such a poor level that the medicine won’t make much of a difference. Add in the potential for serious side effects, and this can cause them to nix the idea altogether.
As you care for someone who is nearing the end of life, think about the goals of care, weighing risks, the benefits and side effects of the treatment. You’ll likely make a decision that is based on your loved one’s comfort on one hand, and the desire to extend life for a bit longer on the other hand.
Questions to Ask About End-of-Life Care
Ask questions of the hospice care team, such as:
- How will the treatment and approach offered by the physician affect your loved one’s quality of life? Will it make a big difference in their well-being or comfort?
- If you want to provide home hospice, what do you need to properly care for your loved one? Does the facility in question have specific experience caring for people with dementia?
- What can we expect as family members and caregivers as our loved one’s disease gets worse?
Making Plans in Advance
The best way to prepare for the final stages of your loved one’s life is to speak with them about their wishes as soon as you can. Ask what medical treatments they want, assist them in filling out legal documents, and explain anything they don’t understand.
Some other important considerations include:
- Talk to their doctor about the outlook, prognosis, and timetable for their illness.
- Finalize their will and other financial plans.
- Ask them if they would rather live out their last days at home or in a hospital or nursing home. If the answer is home care, realize that you can change your mind if the burden gets to be too much, says WebMD.
- Find out about hospice and palliative care services available in your area. Ask what services are covered by insurance.
- Decide which funeral home your loved one wants to use and work out the funeral plans in advance.
None of this is easy, but the burden can be lessened with a little bit of forethought and planning. Involving your loved one in the decisions, preferably in the earlier stages of the disease, is a good idea.
Contact Pathways Home Health and Hospice
To learn about our hospice services, contact us at 888-978-1306.
