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Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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June 11, 2008
Respite care helpful but difficult option
By Angela Lunde
My sincere thanks once again to those of you sharing your stories. There are probably hundreds who are reading and relating to what you have to say.
Obviously, there are no easy answers to the epidemic of Alzheimer's disease that brings with it nearly 10 million Americans providing 8.4 billion hours of unpaid care (mostly family). As stated in our previous dialogue, some of you find relief by attending support groups if they are available, others mentioned that writing and venting provides benefit at some level, others have suggested the importance of respite.
Once again, I realize obtaining respite care is easier said than done, there can be numerous obstacles, including our own reluctance (feelings of guilt or abandonment are common). However, none of us are equipped physically or emotionally for 24/7 caregiving. I would appreciate hearing some of your stories and experiences around respite care.
Here is a small list of the types of services (both paid and volunteer) that may be available in your communities, as well as some excellent resources and Web sites to check out.
- Adult day programs. There comes a time in the disease of Alzheimer's that leaving the person at home, even for short periods, is not an option. At the same time, taking them out only confuses and overwhelms them and you. Day programs can offer the person with dementia a safe and social environment while giving a predictable and needed break from caregiving. See link below for more on adult day programs.
- In-home paid care services. In-home services can be available in a variety of ways. Companion services provide company for the person with dementia while helping to facilitate and supervise activities. Personal care or home health aide services assist with bathing, dressing, toileting and exercising. Homemaker services help with laundry, shopping, and preparing meals and skilled care services help with medication and other medical services. Many agencies will offer many or most of these services. See link below for respite care in your community.
- Student or intern. If your community has a college you can inquire about students who may be interested in an opportunity to provide companionship and supervision to a person with dementia. I know one caregiver who found a student to provide respite and friendship to the person with dementia for more than two years.
- Volunteer through church/place of worship. Parish nurse and home respite programs are organized formally or informally at many churches. For example, at my church if a member informs our 'Care Coordinator' that they need respite care a few hours a week, a call is made to individuals from the congregation who have expressed a willingness to help.
- Department of Social Services. Check with your county social service agency. In-home community care programs may be available and are based on income.
Bottom line: Getting or accepting respite care often means that you can keep your loved one at home longer, which for most of the families I have met, is the ultimate goal.
Remember, that getting a break yourself gives you the opportunity to rejuvenate, pay attention to who you are outside of your caregiving role. This period of respite often helps you to be a better caregiver. Think of respite as a gift not only to yourself by also to the person you are caring for.
16 comments posted
May 1, 2009 3:46 p.m.
We have used an agency - Livhome. They seem to be good. Once or twice a day,one of 2 caregivers, or myself spend time in her home preparing food, seeing that she eats, and reminding her to take medication, helping with hygeine and housework. When she complains about the caregivers, the agency is right on it - on one occasion, this was valid, other times it was not. The problem is paying for it. MIL has the money, but is very thrifty, and doesn't understand that $2 or $3 an hr. is insufficient. We cannot pay for it. When my husband uses their joint acct. to pay for this, she wonders why he is "taking" her $. Of course she insists that she needs no help, and has no memory problems. Also, my husband swings between acceptance and total denial. If I say anything about her needs, or need for caregiving, he sometimes sees that as a hateful personal attack on his beloved Mother, and becomes angry with me. I care and do not want her to be neglected, as she has been in the past, leading to serious health problems. We are respectful, but one can't take everything she says as truth, her mind is not fully functioning, she can't help this. Right now this is about what she NEEDS to be safe and healthy and to remain in her home as long as poss. It's not about what she says she wants/doesn't want. When I stayed out of it before, he did not take care of things and visited her only once every 2 wks., his brother once/2 months - she was totally alone nearly always, practically starvin
- Patty
April 13, 2009 3:08 p.m.
We use Extended Hand Home Care as our respite care for my mother, and I couldn't be more happy. Using their service allows her to stay at home as long as she can. I would advise anyone to make use of these services where ever you are.
- John H.
April 13, 2009 3:07 p.m.
We use Extended Hand Home Care as our respite care for my mother, and I couldn't be more happy. Using their service allows her to stay at home as long as she can. I would advise anyone to make use of these services where ever you are.
- John H.
July 22, 2008 9:49 p.m.
Respite care can be good only when one can find the right person for the respite care.Word of mouth is the best. Don't be fooled by thinking that because you are going thru a company you are getting good help. The companies I have dealt with, most have never even met the person they are sending to your house. The person goes in, fills out an application, pays $25 for a simple back ground check and they are hired. Their manager that sends them to your home usually covers a large district and has never them in person. Most are not even CNA certified.They don't know the proper way to dress or bathe the patient. Thank God, my husband has a very good one now.
- Virginia
July 17, 2008 7:49 p.m.
I hope my mother (95) who has Alzheimer's does not outlive my sister (66) who provides 24/7 with NO HELP because mom figures my sister can do it all.
- Ralph Griswold
July 16, 2008 6:20 a.m.
I am 73 years old. My husband has dementia. This has been very stressful for me and even though he goes to day care 2 days a week the rest of the time is difficult for me. i have my own health issues,and having total responsibility for his care and all that entails is so overwheming. I have no energy. i take tranquilizers and all this is too much for me to bear. I have found reading helps me when i cannot sleep. Email has been a lifeline for me. My husband can dress and feed himself andloves tv and movies. we eat out a couple times a week. he enjoys day care and i wish we could afford for him to attend more days but at 55.00 it is costly. So I try my best. I hope to get better at it.
- LORI
June 28, 2008 10:35 p.m.
I am 60 years old and the youngest of the family. I care for my 97 year old mother 24/7. She shares my bedroom so I can keep an eye on her all the time. She is still sharp minded but she is almost blind. She is no trouble to me as I consider it like taking care of a new baby. I have my other family members helping me so when I need a break my son cooks for her, keeps her company and she is very comfortable in her surroundings. I could never put my mother in a nursing home as she is very precious to me. I am now retired and with the help of my family, I have time to care for her, do my garden, enjoy my pets, and enjoy some time for myself. May God give them the strength, and may he bless all those who choose to keep their parents home and care for them.
- Colette
June 27, 2008 9:31 a.m.
My husband has Alzheimers & I have just started some respite help for 4 hrs., twice a month. He does pretty well for an hour or two but I worry about his falling. We have steps in our house. Our family wants us to move to assisted living but I'm not sure that is good at this stage. He now has a routine with familar surroundings...which I feel is healthy for him. Moving him now would be so confusing. He sleeps & eats well, is able to shower & dress himself...with some help. We can go out for a ride or sometimes a lunch so I feel he is doing pretty well for now. Do you think a move is right?
- Faye Miller
June 25, 2008 7:21 p.m.
Respite is not a luxury or a gift to the caregiver. It is an absolute necessity. Caring for my own mom got more and more complex and demanding. In the end, I went for 8 or 9 days without a 6-hour block of sleep . . . and at that point, I had to admit I was done-for. I had good respite care for one of my jobs, and had, in addition, a half-day for myself each week. It wasn't enough. You need sleep. You become hyper-alert--how well I know that 24/7 baby monitor drill--and you have to get a break from always watching/listening, even when in bed, trying to sleep. As soon as you hear a sound, you know or imagine something bad is going to happen--usually a fall. Then there was the other stuff--eating spoiled food or not eating/drinking at all; mom spraying bathroom cleaner on her legs; wandering out naked in the snow; the soiling, the skin breakdown; putting metal objects in the microwave, melting things on top of the stove. You rein in more and more. You take things away from your loved one. You child-proof the house. It is never enough. Another hazard always crops up. Not only that, but taking everything away changed my mom's quality of life. I began asking myself, "What is left for her?" The worst part is NOT that your loved one no longer knows your name. The worst part is that you no longer recognize your loved one. My mom is a 2-dimensional version of her real self--as if she was a photo of mom, not the real mom. Respite care cannot fix that sad illusion. Chris
- Chris
June 21, 2008 6:54 p.m.
I am a holistic health educator( an RN who has studied and lives by both Chinese and western medicine) and a live in caregiver for an elderly woman with Alzheimers. The family has money to keep her at home and I'm grateful to be a live-in care giver. I have some moments of dizziness lately and am able to get relief through Chinese medicine. I'm convinced Alzheimer's can be prevented as I decided to do that for myself. It is soooo much in my determination to create a mindset that works and eat well and get exercise, and be aware that I can change my mindset at any time. The woman I care for is quite pathetic and still has some moments of being aware and even making sense---massage helps a lot and music can be beneficial. I've found chinese medicine is the best way to rebalance the meridians- not a cure but helps the level of consciousness- Tender loving care is still the best way to respond.
- Robyn Wolf
16 comments posted