Original Air Date: April 26, 1998

What should a person consider before becoming involved in caregiving?

• The problem is people often don't think about it beforehandÑeither because it's thrust upon them quickly, or because they just don't realize what they're becoming involved in caregiving.
• Very often in families the person who becomes the caregiver isn't the person who's the best equipped to be a caregiver. In fact, often it's the person who's least equipped (i.e. a single person with no "commitments" who seems the obvious choice for primary caregiver may have that lifestyle because they don't want or aren't good in "responsible" positions).

Who makes a good caregiver?

• Some people take on the caregiving role and it's a "wonderful fit." The attributes these people have are patience, a sense of humor, creativity and flexibility. Those people can cope with the kinds of problems that inevitably arise. This is important because such a high percentage of caregivers end up clinically depressed.
• Some people just aren't cut out to be caregivers. It's okay to acknowledge that it's not the job for you, and family members have to give each other permission not to take on the job.
• The hardest part of the caregiving relationship is balancing the needs of the care-receiver with the needs of the caregiver.

What are the warning signs of caregiver burnout?

• Often the people who are the most highly-motivated caregivers are the most at risk. High motivation can make them blind to the fact that they are stressed.
• SPhysical exhaustion: just not being able to do the normal things in your day.
• Becoming tearful, emotional.
• Trouble making and/or carrying through on decisions.
• Realizing that you've cut yourself off from friends and family.
• Many caregivers find it difficult to ask for helpÑparticularly those who are spousal caregivers. They feel that nobody else could possibly care for their loved one as well as they do. You have to be able to tell yourself that it's okay to ask for help.

How prevalent is guilt?

• For some caregivers, it is a big part of the caregiving experience. It depends to a great extent on the historical relationship between the parties involved. If the relationship has always been good, then there's likely to be less guilt.
• Even in the best relationships, there are some junctures where guilt may rear its head: when the caregiver decides to bring in outside help, or when the topic of placing the person in LTC comes up. These can be very emotional, guilt-laden areas.

Advice for primary caregivers?

• Do more preventative work. Put a system in place in advance. Once you are already overwhelmed, the task of getting help at that point seems much more daunting. Even if everything is under control now, the time will come when it is too much for you to handle, and then it's much harder to put structures in place.
• Maintain your own life and social life.
• Utilize social supports like family, friends, neighbors and professionals, and use them earlier than you think you should. It's much worse to introduce new people into the care-receiver's life when he/she's in crisis later on.
• Have a plan in place for the next stage of the person's illness. In a crisis, the "system" reacts the best way it can, but it's not always the way you want it to. Know in advance the way you want things to unfold.

Advice for secondary caregivers/family members?

• Watch the primary caregiver for signs of depression, withdrawal or giving up on activities they previously enjoyed.
• It's often difficult, but try to get the person to get help and accept the involvement of other family members. The family should work as a team, but this is a problem because some caregivers have a real sense of duty.
• Figure out how to get involved and take some of the load off the primary caregiver without offending the primary caregiver or making them feel like they can't do the job.

What type of respite is available for caregivers?

• It doesn't have to be formal. It can just be "break time" away from the person.
• There is also formalized respite where you hire someone to come into the home or the person receiving care goes to stay somewhere (like a nursing home) for a period.

At what point do you give up and place a loved one in long-term care?

• It's a very difficult decision; one caregivers really struggle with.
• The issue is that, in many cases, caregivers wait too longÑoften because they have imagined long-term care will be much worse than it really is.
• Once a primary caregiver does decide to place a loved one in LTC, it's important that the rest of the family is supportive; it's hard enough without other people questioning the decision.
• Usually it's a very gradual decision that's arrived at over time. It's not a decision you just get up one morning and make.