PROFESSIONAL IN-HOME CARE
How do I know it is the right time to consider or hire in-home care?
PSP, CBD and MSA are challenging diseases to manage without help, but when to hire in-home care is not always clear and is a very individual decision. In the earlier stage of disease, it is possible for your loved one to function independently. However, as the disease progresses, you may notice increasing difficulty with performing basic functions without help or safety risks. Many families will hire someone in the earlier stages of the diagnosis for companionship or just a little help in order to establish a relationship with an agency or caregiver and start getting used to professional care. You may want to start the process by asking your neurologist and / or social worker for their input and advice so that you can better understand the level of care required at various stages of disease progression. It is also important to consider not just the care support you need now but also what you may need down the road. Take into account how in-home care may help with the prevention of complications like a big fall or care partner burnout. Once they hire in-home care, many people report that they could have utilized the services earlier.
Factors to consider regarding the right time for professional in-home care:
• The age and physical health of the primary family care partner
• If you are the sole person providing care and if you have support from other family members or friends
• Other responsibilities you may have, such as work or other family members to attend to
• How much of your day is spent on caregiving tasks and responsibilities
• If you are finding that you are sleeping less or experiencing increased fatigue, more anxious or easily irritated, feeling hopeless or less interested in activities you used to enjoy, or not attending to your own health( e. g., missing medications or appointments)
• What time you have for yourself – to attend to your mental and physical health; spend time with your friends and other loved ones; do something enjoyable, relaxing or energizing
• Your comfort with your loved one’ s safety while you run errands or leave them alone for any length of time
• Your home setup for the person’ s care needs now and in the future, including ease of navigating the home space and availability of safety and adaptive equipment such as grab bars and a shower bench
• If your loved one, friends, family members or healthcare providers have shared their concerns about your health and needs
• Why you are considering professional in-home care at this time
We recognize that pursuing professional in-home care is often a big step. Trusting your care to an outside person, and having someone else in your personal space and part of your routine, is definitely a transition. It takes a great deal of courage and openness to consider bringing on additional support services.
It can be helpful to keep in mind that any in-home care services you hire do not have to be set in stone and you have the right to advocate for your care needs. This could be increasing, decreasing or stopping services altogether; asking for caregivers to do or not do certain tasks while they are working for you( e. g., being more proactive); and finding a different caregiver if someone is not the right fit.
Not all people with PSP, CBD or MSA have a clearly defined family care partner or one who lives with them or is able to help. Many diagnosed people who live alone, or who want to support their family, will initiate hiring professional care services.
Step 2: Identify your home care needs.
Most in-home care is“ non-medical,” meaning they are usually not doing things like wound care, tube feeding, tracheostomy or ventilator care, suctioning, placing catheters or distributing medications( they can do medication reminders). They also often cannot cut nails.