The Whitworths of Arizona, bringing science to you in everyday language.

Friday, May 2, 2014

Caregiver Help in the Home

Former blogs have discussed the need for help with caregiving—and the caregiver’s resistance to using said help. Caregivers almost universally resist placing their loved one in a residential facility. When they do, it is usually after they’ve exhausted all other options. And after they have also exhausted their own physical resources to the place where they are truly unable to do the physical care any more. Getting the caregiving help you need doesn’t have to mean residential placement. There are other options:

Family and friends. All you generally need at first is a few hours free to go run errands. Often there will be neighbors, family or friends who can sit with your loved one while you are gone. As the need increases, these sources become less useful because they may not have the ability, knowledge or even the inclination to do everything that needs to be done—like helping with toileting or transferring.

Adult day care. These programs can provide social, medical and emotional support for your loved one and some respite for you. They are often a good choice for a caregiver who is still working at an outside job. Many provide transportation as well. It may take a while for acceptance to take place but caregivers often report that their charges like going once it becomes a routine. It often helps to go together at first and then leave your loved one there alone for longer and longer times. Use the checklist on page 176 of the Caregiver’s Guide to Lewy Body Dementia (the Guide) when selecting a program.

In home help. Agencies such as Home Instead and Visiting Angels provide bonded and trained home health care technicians who will come to your home. You can usually set up a schedule that works best for you and your loved one. There are also many independent home health caregivers who do a very good job. However, do be sure to check their references carefully.

Edgar is getting almost too much for me to lift by myself and I know I need help. But he sleeps most of the time. I just hate the idea that except for a half an hour now and then, I will be paying the aide to sit around doing nothing. -- Amy

Some aides will also do light housework during their patient’s down time. This would address Amy’s issue and even help her to catch up on work that often gets put off because of other caregiving duties. Eventually, the time will come when you need round the clock help. This can be quite expensive and caregivers often opt for residential treatment at this time.

Hospice care. Most people don’t call hospice in until their loved one is only weeks or even days from dying. This is a shame because hospice provides wonderful in-home services, including a weekly nurse visit and an aide who helps with bathing several times a week. It is free to anyone who is on Medicare but a person does have to meet certain requirements to qualify. One of those requirements is that a physician must document that the person’s condition is such that they may live only six more months. However, this is a very subjective decision. People have been known to live for years on hospice! Pages 216-222 in the Guide discusses hospice eligibility requirements and much more.

Palliative care. Many hospice organizations offer palliative care (comfort care) which is essentially the same care as that provided for hospice patients for a usually reasonable fee. This is worth checking out. It can often be a good way to start using in-home care.

Future blogs will discuss residential placement.

Read more about caregiving in A Caregiver’s Guide to Lewy Body Dementia, available on

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