2015 annual family caregiver survey results - … you taking care of yourself? 2. ... day trip or...
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2015 Annual Family Caregiver
Survey Results
Denise M. BrownCareGiving.com
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How old are you?
How o ld are you?
Between 21 and 35.
Between 35 and 50.
Between 50 and 60.
Between 60 and 70.
Between 70 and 80.
More than 80 years old.
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Do you take care of yourself?Do you adequate ly take care o f your physica l, emotional, denta l and med ica l needs?
Yes.
No.
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Why not?
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Is this your first time caring?
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How long have you been caring?
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How much longer?
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How often do others help?
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Why don't they help?
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Have you trained a back-up?
Have you tra ined a back-up who can p rovid e ca re in case you can' t?
Yes.
No, I don't have anyone who
will be my back-up.
No, I haven't had time to do this.
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What's your stress levels in dealing with family members?
Please ind ica te your stress leve l in dea ling with o ther family members about careg iving .
Very stressful.
Stressful.
Stressful at times.
Not stressful.
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How much time each week do you have for yourself?
How much time each week do you have fo r yourse lf?
Less than 30 minutes
Between 2 and 4 hours
Between 4 and 8 hours
Between 8 and 12 hours
More than 12 hours
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What's the worst question others ask you?
Top answers:
1. Are you taking care of yourself?
2. Why don't you find a nursing home for your caree?
3. Why don't you just get some help?
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When is/was the hardest time?
Top answers:
1. When I hadn't taken a break in awhile and I was exhausted.
2. Now because my caree is declining so quickly.
3. When I first started helping and family/friends disappeared.
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Are you happy with services in your area?
Are you happy with the serv ices in your a rea?
Yes
No
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What's most difficult?
ManManaging my emotions (guilt, anger, grief)aging my emotions (guilt, anger, grief)1. Managing my emotions (guilt, anger, grief)
2. The loneliness and isolation
3. Getting a good night's sleep
4. Finding the patience that's needed
5. Finding time to socialize with family and friends/Getting a break
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How stressed you?
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What's the most stressful?
The day-to-day grind is most stressful.
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What services would you like to see?
1. Financial aid for family caregivers
2. Caregiver conferences, seminars or workshops
2. Respite care so you can get a break
3. Support groups
4. Coaching or counseling services
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What's your most difficult decision?
“Making the decision to insist that I take a break -- a day trip or overnight -- when I sense that I am so overwhelmed I simply can't function at my normal capacity. I get exhausted physically and emotionally.”
“Deciding I had to quit my full-time tenure-track career to move "home" and care for my parents.”
“My husband is in late stage and I worry about when I have to say not to treat an infection or something that comes up and that decision ends his life.”
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What's the best thing you've done for yourself?
“Got myself a dog. Before that I found myself self medicating at night with alcohol products just to relax.”
“hired weekly caregiver for respite. she became a wonderful friend, ally and resource.”
“Joined a modern square dance club. Square dancing takes a lot of mental energy so I can't think of anything but my dancing. It's also a group that loves to hug. That's nice, too.”
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What changes would you make in your community to help family caregivers?
“Build a volunteer program for daily respite. No caregiver should go without a break.”
“I was amazed at how hard it was to find services and few were available in our community, where the elderly abound. Services were available but you have to travel, or do alot of digging. It's not like we're in Appalachia, we're in South Florida. Everyone is old.”
“Mandatory monthly family counseling session for every caree & his/her family/partner.”
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What changes have you seen which has made caregiving easier? Harder?
“NONE. NOTHING IN 13 YEARS. NOTHING AT ALL.”
“We lost meals on wheels because they said my grandfather had me at home to prepare meals for him. He sure missed some of the people that delivered those meals. He knew some for a few years.”
“I'm finding out just how few stores or businesses are truly wheelchair accessible. That's for sure!”
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What advice would you give to a new family caregiver?
“You're in it for the long run. It's going to take time to learn it all. Give yourself time. You won't become an expert overnight. And that's ok.”
“Educate yourself in your caree's condition and don't lose yourself in the caregiving.”
“take time to take care of yourself.”
“Join a support group. Don't panic. Don't try to learn everything at once. It's going to be a long process. In a year things will be much better than they are today. Join a support group.”
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What advice would you give to a new family caregiver?
“Don't allow yourself to isolate yourself from friends. Take time to get out and focus on other things.”
“Never take no as a final answer. Get help from someone and get it before your situation becomes more than you can handle.”
“find assistance and research what programs you qualify for early in the process while you still have the energy to do so. Get your support system firmly in place early.”
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How do you manage the isolation?
“I have been just ignoring them but that doesn't work...I reached out to a support group.”
“It's just something I have to accept.”
“I cry or laugh. Both help. I can be in a room full of people and still feel lonely. It's hard to know when it's ok to discuss the stress caregiving brings. I'm afraid I'll scare people away.”
“prayer & scripture”
“I remind myself that having my carees be part of my life trumps not being able to get out of the house to do things. But sometimes it is a BIG sacrifice.”
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What advice would you give to a health care professional?
“Get a clue and be informed what the caregiver needs and have solutions and support available”
“Just be kind.”
“provide a clear picture of stages of needs associated with type of services”
“If this is your calling and what you love to do, bless your HEART. Everyone is not suited for this field and line of work.”
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What advice would you give to a health care professional?
“Give the best opinion on how the disease with progress, with the understanding that the disease doesn't always follow the same pattern with people.”
“Always check to see if they are sleeping good. They probably are not.”
“Don't come with the same pre-rehearsed speech, get to know each person personally.”
“Listen to the caregiver- we know what's happening, even when the caree doesn't. We know what's normal, what isn't, and can detect changes, even subtle ones.”
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What's your greatest lesson learned?
“Patience and understanding can get lost amid feelings of resentment, loneliness, and guilt after an extended period of caregiving.”
“EVERYONE HAS A STORY, so listen, yours is not the worst.”
“Life is short enjoy your family and nothing lasts forever. Pray for endurance.”
“Be patient and kind.”
“Things are not always what they seem. ”
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What's best tip?
“You have to laugh about it or you'll go crazy.”
“Ask for help. BE HEARD when you need help.”
“Do not let your brain run ahead and worry about the future.”
“this too shall pass. you will be glad you did this.”
“do your best then let go.”
“Develop charts to help you track your caree's changes and symptoms”
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Thank You!
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Thank You!
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