Council on Aging’s caregiver expert offers tips on respite

Wednesday, November 18, 2015

COA's Caregiver Support Nurse - Nina Wichard
COA's Caregiver Support Nurse, Nina Wichard

For nearly 14 years, Nina Wichard, R.N. has been supporting caregivers with information, advice, education and the gift of listening. Until her semi-retirement last January, she represented Council on Aging’s Caregiver Support Program by visiting caregivers in their homes. She still does that, but now, she works from her own home two days a week offering caregiver support over the phone.

“Over the years, I have heard everything,” Nina said. “I listen and I stay real calm. Many times people just need to get some things off their chest.”

Most of Nina’s referrals come from COA’s Aging and Disability Resource Connection (our call center – 800-252-0155 or 513-721-1025), but also from care managers and from people who read about caregiver support on our website.

“Even though I am not doing home visits anymore, I still get good feedback,” Nina said. “Some people I can’t always be sure I have helped, but often a caregiver will say, ‘This has been so helpful.’ So much depends on how open they are how and how much they want to share and ask me questions.”

Nina has pulled together packets of information that she sends to people and there is also a caregiver manual she and others created for Council on Aging that she sends to people when appropriate. 

“I’ve put together good packets in particular for dementia care and for someone taking care of a spouse,” she said. “I also have good tips on caregiver support; not just lists, but helpful information.”

The theme for the November 2015 observation of National Family Caregivers Month is “respite,” so we put some questions to Nina on that topic. 

What exactly do we mean by the term “caregiver respite?”
Respite is a period of rest and relief from caregiving responsibility. Generally it’s a short time where care is provided by another person. 

We hear that respite is the most frequently requested support service for caregivers. Is that your experience?
It’s requested a lot, although people may not always use the word respite. They just know they need a break. They’ll say things to me like, ‘Can somebody else come in and stay with my dad so I can get out?’ I will tell them that in the caregiving world, we call that respite time.

On the other hand, we also hear that some caregivers may be reluctant to get the respite they need or they don’t realize how important it will become to their own quality of life.

COA's Caregiver Support Nurse, Nina, with clients Forrest and Clavilia
Thanks to respite and senior companion services through ESP and another local organization, Clavilia is able to take a break from caring for her husband, Forrest, who has Alzheimer's.

Often I will see a family member – say a granddaughter – who wants to bring her grandmother home from a nursing home. She really wants to do that but she is not too knowledgeable about what is involved. Then after two, three, four months, that’s when it hits. The constancy of it, day after day. I don’t think people realize what caregiving is going to be like until they are in the middle of it. And after a few months, they realize, this is overpowering. Once somebody is into a fulltime caregiver situation, they do come to realize that they need help.

What is the most frequent concern about respite that you hear from the caregivers you help?
One concern is questioning whether they can trust the person coming into the home. Most often, respite is provided by home care workers. But some people won’t even consider having a stranger come in.

Others don’t mind having someone in the home, but they want to be there at the time. Sometimes the respite may come in and the caregiver just stays in the home and sleeps or does other tasks.

Another thing is sometimes the caregiver feels like the person (providing respite) won’t know how to care for their loved one as they do.

I always tell people that, yes, there are bad situations occasionally, but many, many more home care workers do a good job and are honest.

Also, some caregivers think that getting respite implies that they are somehow not doing a good job. But, it’s just the opposite. Getting respite is important to good caregiving.

Can you describe and give examples of different kinds or levels of respite?
There are several different levels of respite. First is having somebody come to the home. Most of that respite is provided on an ongoing basis for a couple of hours once or twice a week. The primary caregiver uses the time to run errands or for social time or just to sleep.

This kind of respite is provided all the time through ESP (Elderly Services Program) and PASSPORT (in-home care programs provided through Council on Aging). It can also be provided through the caregiver paying privately. They find help either through an agency or just an individual provider or perhaps someone they know.

I know some caregivers who are very sleep deprived. I have seen situations where the caregiver is paying an agency aide to come in overnight for two or three nights a week just so they can catch up on sleep. That is desperation, but they are about to fall flat on their face. You have to pay privately to get someone on an overnight shift.

I have also heard of caregivers hiring help through a home care agency when they are going out of town for a long weekend and they need someone there 24-hours a day.

Respite also can be provided out of the home. One example of that is adult day service, which I think is marvelous. The person goes to an adult day center for up to eight or nine hours a day or one or more days a week. They are given care and can truly be supervised. Council on Aging provides that service if appropriate (via ESP and Medicaid waiver programs such as PASSPORT) and people can pay privately as well.

Another level is respite stay in a nursing facility. Inpatient respite may be covered via PASSPORT and hospice. For PASSPORT, a certain number of inpatient respite days may be built into the program. The reason is, it is more of a total break for the caregiver.

Many caregivers today have responsibility for complex, medical-type care. Does this make it harder to find appropriate respite?
If the caregiver is using nursing facility respite, that should not be an issue. Adult day services can do some things like give meds, test blood sugars, and administer injections. That all has to be set up in advance with the doctor’s approval.

Home health aides can’t administer medications. (Ed. Note: they can bring a pill bottle or medication dispenser to someone as a reminder, as long as the person takes the medications on his or her own.) A caregiver may also have someone with a trach (tracheotomy tube) or colostomy care or needing diabetic testing. This can be limiting in terms of respite because aides can do none of those things.

So, you set up your respite hours around those needs or you may also be able to hire an LPN (Licensed Practical Nurse) to come in. It will be more expensive than a home health aide, but an LPN can do most caregiving procedures.

What are some strategies that can help caregivers get more help from family members and/or friends?
That is a really big issue. A lot of families are very good about helping and a lot are not. The main thing is for the primary caregiver to be very specific in making their request and to not be afraid to ask.

I recommend that caregivers write a list of all the things someone could do that would help. This goes beyond respite and can include all kinds of things people could do: pick up prescriptions, run to the store, take mom out to lunch. Write it down and pick specific tasks and times; don’t leave it nebulous. For example, ‘Sometime within the next month, it would be so nice if you could rake the leaves.’ If you leave it open, more likely it will never happen.

A real big one is still the respite time. So a caregiver can ask siblings for example, ‘I really need a regular break. Would you be able to take mom or dad one weekend a month?’ Of if the person has dementia and doesn’t do well in a different environment, the sibling can come in and provide the care.
I have seen for out-of-town siblings, if they are financially able, they may pay for respite or housekeeping to come in.

Sometimes you have to push the issue, but say it in a nice way even if you feel angry with them because they haven’t volunteered, Just say it directly and matter of fact: ‘If don’t get any breaks, the time will come when I can’t do this anymore and you will have to step in or we will have to place mom in a nursing home.’

I run into so many sad situations where one person is doing everything, especially when the care recipient really has the need for a nursing facility level of care but the caregiver wants to keep the loved one at home. Other siblings may disagree and so they refuse to help. They say, ‘Ok, fine, it’s on you then.’

There are also situations where the caregiver is stealing from mom and the other siblings are unable to stop the situation. Perhaps mom will not push the issue or prosecute.

If something like that has happened, people will tell me all about it because they just want to get it off their chest.

As our population ages, it seems there will be an increasing need to provide more community support to caregivers. What are some creative ideas you may be hearing about? For example, income tax breaks for caregivers and more workplace flexibility.
It seems these ideas are in the infancy stage, unfortunately. Change takes so long and takes so many people advocating for it.

One thing I have seen recently on the internet is caregivers forming respite co-ops to offer respite time to each other.

I do hear about workplace flexibility happening on an individual level. I hear from caregivers, ‘My boss knows what I am going through and is very understanding.’

But it’s mostly at the one-on-one level of people trying to figure it out for themselves.

Ed. Note: The recent AARP update on caregiving “Valuing the Invaluable” includes a section listing federal and state initiatives and policies that reveal an increasing awareness of the needs of family caregivers. For information on these efforts see the report beginning on page 9. The report provides important research and insights on caregiving and updates previous caregiving reports by AARP.