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    Angela Lunde

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  • Alzheimer's blog

  • June 11, 2008

    Respite care helpful but difficult option

    By Angela Lunde

19 comments posted

Alzheimer's Caregiving

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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.

19 comments posted

blog index

  • June 23, 2012 8:03 p.m.

    When it was too frustrating to take my husband to grocery shop or any other shopping that lasted very long I decided to look into home health care - respite care. I found an agency close to home and have someone come in 1 morning each week and a couple of afternoons each month. This has been a big help. I also have set up day care in case we need it.l

    - Barbara

  • December 15, 2011 7:13 p.m.

    My husband has Alzheimer's and it has been 8 years since his diagnosis. It has been a slow progression. He is scheduled for 2 weeks of respite care through the VA in 3 months. He does not have a clue that he has any problems, although I have to help him with bathing, shaving and dressing, and his comprehension of every day activities is limited. He goes everywhere with me and I have not had time away from but once in 3 years. He never lets me get more than a few steps away. How will I ever get him to stay at the VA facility and what will I tell him is the reason I am leaving him there? I am afraid he will be so upset that I won't be able to get him to stay. I am an artist and I plan to exhibit my work in a museum show and sale in another city. I have been looking forward to this break so much and a few days of normal life would be a life saver. Any advice would be appreciated.

    - Annette

  • March 19, 2010 9:37 a.m.

    I am 57 and my husband who is 62 has early onset Alzheimers disease. He has been doing OK but I have begun seeing changes that make me think I need to seek help.Currently he stays home alone while I work..How will I know when he needs more care?

    - Kat

  • 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

  • June 18, 2008 3:02 p.m.

    Day care has been so wonderful for m husband who has Alzheimers. He cannot be left alone and walking is difficult so there is little he can do. Day care has stimulated his abilities and made him do things he won't at home. He does not want to go until he gets inside and then the friendliness and enthusiasm makes him forget that I am leaving. The four hours for each day twice a week give me a new outlook on life. It is expensive but worth it.

    - Pat

  • June 18, 2008 12:28 p.m.

    WE have been dealing with FTD for some time now & have finally begun to utilize respite care. What a miracle!! Each day he goes to respite for 3 hours & truly enjoys the social contacts. I am now beginning to see that a long weekend 1X/month is also going to help me remain a caregiver for a longer period of time. It is VERY hard to let him go to a long weekend of respite, he seems to sad & abandoned. I know logically, however, in the long run it helps us both.

    - Georgie

  • June 18, 2008 2:58 a.m.

    I'm a retired college prof. at 57 quit my jobs,returned home to take care of my ill parents,Mother 82,Father 88.I took care of them 12 hours a day 365 for 7 years. I had no help from our family.I had 2 weeks off in the 7 years. 1 week had Prostate removed,on 9-11-01 had my upper rt lobe of lungs removed. I am cancer free. Told to rest 60 daysnwithin 2 days I was taking care of parents again.Received 2 four hour respite breaks from neighborly Senior Services a week, used to do the shopping. By 2003, I had lost 2 million in lost wages,1/2 million given from my retirement funds. Ran up $70,000.00 in credit card debt. Acted with full aware- ness,I was putting God first,family next, then friends, work and then money.A non-materalistic being since a child. Father had a stroke in Jan. 2003, By April-May 2003 he was knocking Mother's head on the wooden floor.She was on blood thinners, with a fused knee. Father was too frail for me to stop him.I called Spousal abuse hotline. Father went into a rage, told all the family I was abusing them, and taking their money. He hired the Attorney for the Guardian in Shiavo case (for Michael).He had undiagnosed dementia in his right hemisphere.Verbally he was very sharp.I was lied to by the Attorney for guardian and Mother was given a State guardian.Beware of culture of Guardians. They tried hard to isolate Mother from me only Family in town.Guardian and att.for Guardian obtained fraudlent Reverse Mortgage.Lost Mother,money,home of 56 yr, good name

    - Jesse Stupple

  • June 17, 2008 11:26 p.m.

    My wife is in the early stages of dementia associated with Parkinsons disease and at 70 years old I am already finding it difficult to cope.We get half a day a week for housekeeping and another half day respite care weekly.I do shopping,banking and similar tasks during this time,so I get little time for myself, not that I want to do anything away from my wife of 48 years, I do realise the need to keep some time for myself without worry.Our local agencies do what they can but we do not qualify for more help at present,Our nearst child lives 300 kilometers away and has her own young family to care for,so I can't expect her to help.All I can do is battle on and hope that my health does not collapse. John.

    - John Andrew Smith

  • June 13, 2008 8:15 a.m.

    I am a geriatric social worker and used to work in long-term care, which we also offered respite care services. Mom or dad would stay with us for a week or a weekend so families could have a break or go on a vacation. I don't think I've ever met a family member who didn't feel some sort of guilt...part of my job is to let the caregivers know they they also have to take care of themselves. Caregivers often push themselves to the point of getting physically and emotionally worn down. I've read a statistic before that some Alzheimer's patients outlive their caregivers because the stress on 24/7 caregiving is so great. It's definitely important for caregivers to take the time to care for themselves so they can do the best job for their loved one.

    - Katie

  • June 12, 2008 7:53 p.m.

    I use a home health care agency during the day while I'm at work, but one day when I was home I didn't cancel the service. I took a nap while the caregiver stayed with Mom and it was pure luxury. I turned off the baby monitor and slept for 2 hours. At some point I have never used respite for more than a few hours because of the guilt.

    - Robyn

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