Dementia, whether caused by Alzheimer’s or Parkinson’s or some other disease, creates a very particular and emotionally fraught set of challenges for both patients and caregivers. When you’re navigating your way through this heartbreaking landscape of gradual memory loss, impaired reasoning, and personality changes, you need all the support you can get. You may be surprised to learn about one valuable resource that is too often overlooked – hospice.
Our previous post Hospice and Dementia: Not What You Might Assume, explored some specific ways hospice can help. This piece will talk about its benefits and when you should reach out to hospice.
Hospice is often misunderstood
Many people wrongly assume that hospice is a last resort, an option that is only appropriate in the very last stages of life when the patient and family are ready to “give up.” This misconception robs families of much-needed support that could make their lives much easier and less stressful.
Hospice is, in fact, about adding life—not in terms of extending life, but in terms of increasing the quality of the patient’s remaining days. It’s about changing the focus from the disease to comfort and dignity.
In addition to misunderstanding the role of hospice care, many people assume that hospice is out of reach financially. In truth, most hospice services are covered by Medicare and Medicaid as well as private insurers. There are also many resources (like social workers) who help families identify opportunities for financial assistance and provide financial planning advice.
When is it the right time for hospice?
When you’re watching a loved one in the slow decline of dementia, it’s very hard to know what to do at any point, and almost impossible to know—on your own—when to engage a hospice team. The signs of the disease’s progression can be subtle or may come and go, making it hard for you to accurately assess the situation. It is a confusing and emotional journey.
Common signs that you may notice, and which indicate that the disease has progressed to a critical point, include
- a marked reduction in speech
- an inability to walk
- complete dependency on others for basic tasks like eating and dressing
- severe anxietyThese behaviors can be as stressful for you as it is for them. It is distressing to be unable to provide the comfort you so desperately want to offer.
If any of these symptoms persist, it may be the right time to request a hospice evaluation. Often, the attending doctor may recommend such an assessment, or you can ask them to. In most cases, hospice is engaged once a doctor has determined that the patient has six or fewer months left to live.
Hospice offers many benefits
At its core, hospice ensures that your loved one’s comfort, dignity, and sense of security are the guiding force behind all care decisions. Hospice care is often provided in the home—whether that means in a private residence or in a skilled nursing facility—meaning that your loved one is able to stay in familiar surroundings. Hospice care also tends to reduce the need for hospitalization, which helps reduce stress.
Making end-of-life care decisions is always rife with emotion and anxiety, but in dementia cases, it can be especially confusing and upsetting. You must wrestle with questions about how to control behavior and manage your loved one’s anxiety while also addressing the treatment of physical ailments. A hospice team helps you with these difficult decisions by providing invaluable insight and perspective.
Hospice teams also offer education to help you understand what’s happening so you can feel more in control and provide more effective support for your loved one
They advocate for your family and are an enormous help communicating with and directing other healthcare professionals. They can assist with locating specific services to finding beds in appropriate facilities to connecting you with financial and other resources. They can solve problems and manage situations that you thought you’d never be able to sort out.
Finally, hospice providers are a great source of emotional and even spiritual support. When you are feeling completely at a loss, they know exactly what to expect and what needs to be done. They can guide you and support you so that you don’t feel so alone.
Caring for a loved one with dementia can be overwhelming and exhausting, and many caregivers experience stress, anxiety, and depression as a result of being constantly on call and always facing dire circumstances. Hospice offers you a little relief from that heavy responsibility by providing you the ability to take a little time off from being constantly on duty, allowing you a chance to step back and regroup.
When you’re caring for someone with dementia, you deserve all the support you can get
Battling terminal illness and facing the death of a loved one are two of the most difficult and heartbreaking experiences you can endure. Dementia adds confusion, hurt, and guilt to that pain. But a trained hospice team can give you the information, resources, and support you need to feel confident about your decisions and to be able to give your loved one the care and comfort they want and deserve.
Don’t be afraid to reach out, ask a geriatric care manager or your physician to recommend an organization that provides hospice. The help is there for you.