Written by Shannon Hazen, Director of Professional Services

It is a hard thing to be the caregiver for someone with dementia.  You worry day in and day out, the stress of having a person dependent on you can cause anxiety, anger, sleeplessness, and fear.  Days are spent focusing on the needs of another, there is not time for a break, and then there’s overwhelming guilt when a break is taken.  Suddenly, your mood is in a constant state of irritability, you feel over-tired and rundown.  You must take a break, but how?

Taking on the role of caregiver can be life-altering.  Not only are you responsible for the day-to-day activities of living for someone, but your role has changed.  If the patient is a parent or grandparent, it is no longer the role to be the child.  If the patient is a spouse, the entire relationship changes.  This is hard, it can induce feelings of anger, and loss of self-worth as you no longer have the identity of who you once were to the person.  According to the Alzheimer’s Association’s 2019 Annual facts and Figures report, 60% of dementia caregivers report high to very high-stress levels, and 40% report clinical depression.

The Alzheimer’s Association provides some helpful information about caregiver stress, including what are the top ten signs that you may be suffering from caregiver stress.

What is important to know is that the stress you experience changes with each stage of dementia.  In the early stages, not only is everyone dealing with the emotional toll of the diagnosis but the anticipation and planning of the future can be taxing.  Some of my personal tips during this time are

  • Establish a routine and plan for personal time
    • Transitioning to the next stage will be easier when routines are maintained
    • Join a support group: I cannot say this enough, having people to relate to can be the best kind of therapy.
  • Enlist family and friends as part of a “respite team”
    • Believe it or not, most people want to help. Creating a list of folks willing to help early on and create a world of folks who are in tune with your needs and builds trusting relationships that allow the caregiver to take a break.
  • Help your loved one create memory books and shadow boxes
    • Making this a project early on allows the caregiver and patient a way to preserve memories while they are still able to remember; these things will also be wonderful tools to use later.
  • Begin implementing safety measures in the home now.
    • Middle stage dementia is a time when the mental tolls are abundant, suddenly you are worrying about your loved one getting lost, making unsafe decisions, and attempting to hide the increased dependence, and this is often, where anger and combativeness can occur.  If a caregiver is not taking breaks during this time, the stress can become overwhelming, and the caregiver becomes run down and possibly sick.  This is where that new age term self-care comes in.  By establishing routines, activities, and breaks what seems to be the worst time of your life can develop into some moments that are very precious.  But the first step is to make sure that you as a caregiver are keeping a healthy mind and body.
  • Use your team.
    • Have someone stay with your loved one while you attend doctor’s appointments, hair appointments, and caregiver group meetings.
  • Get rest.
    • Worry, anxiety, and fear can work a number on the ability to sleep. Lack of sleep is a big factor in combatting caregiver stress and burnout.  Put a baby monitor in your room and ask a friend to stay overnight from time to time.
  • Look into respite programs and adult day cares. This website provides a list of these providers by state.

End-stage dementia is round-the-clock, 24/7 care.  The patient is no longer able to provide any care for themselves, and there is a lot of hands-on situations.  This is where hospice can really help the caregiver.  When choosing hospice, an aide is assigned to provide bathing and other hygiene needs.  A nurse is assigned to teach care, provide medication education, make changes to medications as needed, and monitor the progression of the disease.  Services like chaplains, social workers, and volunteers can be assigned to help the caregiver during times of stress.  Things like medical equipment and incontinent supplies can be provided under the hospice benefit, eliminating out-of-pocket costs.

The important thing to remember is to ask for help.  Do not wait until it feels like everything is falling apart.  Just reaching out can be a horrible situation, at the very least bearable.  As always, if you have any questions, please reach out to me at Generations Hospice Care, and we will figure out the hard stuff together.