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Thank you Carol, Lynn, Diane and others for bringing up resources and services that can support keeping a loved one at home as long as possible. Adult day programs and care consultations can be extremely valuable to families.
The National Adult Day Association can also provide good information about what a day program can provide persons with a dementia such as Alzheimer's and their care partner. The National Institute of Adult Day Care describes adult day care as a program of individualized services and therapeutic activities in a group setting for adults who are cognitively impaired, physically impaired, socially isolated, frail elderly, in need of assistance with activities of daily living and in need of supervision.
In addition to providing programming and social engagement for persons with dementia, caregivers receive a temporary break from the demands of caregiving — without respite caregivers are more susceptible to the effects of caregiver stress, such as depression, exhaustion and other health problems. Adult day services are worth checking out in your community.
In addition, many of the Alzheimer's Association chapters offer as part of their core services care consultations. It's a grouping of services to assist the person with Alzheimer's or related dementias and/or their family care partners in planning for, and dealing with, all aspects of the illness experience. Individuals with dementia and their care partners receive one-on-one assistance that will enable them to better manage care and make more informed decisions regarding services and treatments. To request a consultation, call the Alzheimer's Association helpline at 1-800-272-3900.
I know many of us feel guilty about asking friends or family for help, hiring help, or taking a break, but keep these points in mind:
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I tried that a couple years ago & it was a total disaster!! I was able to get some shopping done, visit w/friends or just relax for 3 hours twice a week. He absolutely hated it. He said if I could be w/him he would continue, but if not, he didn't want to go back. They had a wonderful reputation & all kinds of activities & sing-a-longs & exercizes but nothing interested him. He was just in his own world. I've asked a couple times if he'd like to go back & it's always an emphatic "NO". I realized it wasn't for everyone & he was always a "people person" I was sure it would help him.
My husband started day care two months ago one day per week. It is a Godsend. I don't have to rush home. I never went shopping to stores, just on line as I didn't want to leave him for long. I approached it by saying it would be good for us both so he went and tried it. After a couple weeks, he was used to it. I wrote it on his calendar. He doesn't seem to remember much of what he does but the staff says he participates in everything. They are wonderful and I am so grateful.
Adult Day Care has been a life-saver & life-line for me. I am my mother's sole caregiver, along with my husband's support.
Mom has been in 2 ADCs since 2007. They both specialize in Alzheimers w/dementia that Mom has.
She's totally disabled now, but I still get her up to go to ADC. She looks forward to catching a special bus that picks her up and it gives me a few caregiver free hours.
One more suggestion for people moving things around - put child safety latched on the inside of critical cupboards and drawers - leave a couple open with things that are ok to move around. Cognitive issues often result in the inability to figure out how to manipulate the latches. Also see if something will fulfill that OCD behavior like lots of face clothes, dish towels,socks to be folded over and over. Mail and important papers I keep in a dresser drawer, otherwise they all disappear. My husband likes a smooth small rock that he carries around like a worry stone. A lap blanket or throw with a satiny edge, furry patch and velvet patch sewn on can also provide stimulation and security.
In home care providers might be the answer Tom - they can stay with your wife in your home or take her out for a drive, walk or movie depending on her capabilities, they will do what you ask. If you belong to a church someone there may help for a lesser fee, but many agencies are out there. If you have valuable/breakable things she misplaces, I'd suggest putting them away for safety and or peace of mind. I worry when you state it is unacceptable that she moves things around - you are setting yourself up for great stress and frustration, life is too short my compatriot. Years ago, when I complained about the things my husband was doing, a wise woman said to me SO WHAT? I had to laugh really - SO WHAT - none of it is life altering and we need to lighten up as much as possible for ourselves and our loved one. My husband is 64 diagnosed 11 years ago with dementia, he is at home goes to an adult program while I work, a God send for me and him.
Adult day care may be a good option for those with nearby facilities, but the nearest such facility for me is 40 miles round trip. Should I wish to perform home chores while my spouse is at the day care location, this would require 80 miles of driving,which is hardly a respite! Home care doesn't work either, because she requires constant monitoring to prevent compulsive, continuous items relocation, and few caregivers would be willing to perform that level of intense monitoring. Any other ideas?
Many local branches of the Alzheimer's Foundation of America also offer such day care programs, not just the Alzheimer's Association!
In my specific caregiver situation, arranging to have someone come to our home to spell me doesn't work since my spouse compulsively and continuously rearranges items making it extremely difficult and time consuming to locate them. Thus the surrogate caregiver would be required to constantly monitor my spouse and prevent these behaviors. Momentary lapses are unacceptable. Taking my spouse to a day care facility is an acceptable option, but the nearest facilities are nearly 20 miles distant one way.
Hi, I am a nurse who works at an Alzhimer's Day-Care Center and I love my job. We our located in Albany, GA on 314 N Jefferson Stree if anyone is interested. We also help caregivers by having booklets and we have a support group once a month for are caregivers. We also take time out of our busy day to stop and talk with anyone who stops by and needs help with their loved one or just needs information about the disease. Our Day-Care is only open 30 hours per week, but the caregivers are very greatfull for any time they can get, to get a respite break from their loved one.
My lovely neighbor that is 87 has Alzheimer's. She has been doing well @ home w/her husband. They live in a mother-in-law apt attached to their son's house.
Recently I became aware of their situation. I offer a few hours once a day to sit with my sweet neighbor so her husband can do something for himself.
Recently she has been ill. With this illness, I am seeing a huge decline in eating and cognitive skills. I feel it is time for her husband to look for adult daycare a couple of days a week. I feel strange about bringing up this subject. However, he has a bad back and is exhausted.
My sister lives with our mom who has alzheimers. My sister recently went back to work after being unemployed for 11 months. our mom doesn't want to be alone during the day. Where can my sister find day care for our mom? My mom can also get verbally mean to my sister. What can my sister do? I live 2hrs. away. Our mom also has been falling alot.
To Karen and Jean:
My husband was diagnosed with AD a little over three years ago. He is full functioning with his grooming and hygiene so far, thankfully, but can not be left for any time at all. We are registered with Medic Alert because the last time I left him for half an hour, he decided to come looking for me. Thankfully I was nearly home when I saw him walking. I take can take him with me 95% of the time, but there are just those times now when it isn't feasible. I have had my two grown children come over to stay with him, but he is a smart cookie, and resents having a "babysitter" - even though we have worked very hard to make the visits seem like "visits" - he is now suspect when they come over, and it is causing him to withdraw and reject them on other occasions as well. I'm at a loss. Day care is not an option at this point - it would break his heart...and mine in the long run. He still deserves to retain some level of dignity...he has so little else.
I don't have any answers - except maybe exercising more creative patience - unfortunately, my mother had Alzheimer's and I know where we are likely heading - and know the time will come all too soon when full time help will be needed in a care home. Experiencing the disease with her has taught me much that has been useful with my husband. The tragedy for all of us is that we yearn for that time when we can live a normal life again, and we are terrified it will come too soon. Go
I live in the US Virgin Islands-sun, beaches, etc. Yet this paradise island offers no help for patient with Alzheimer although more than ever, I hear of someone else having this disease. To make it worst, the senior community center does not allow and is not equipped to handle patients with Alzheimer. Thus, is up to me. My mother remains able to go to the bathroom. And a cousin cares for her while I work which has worked so far. But knowing that soon Alzheimer will take any kind of independence away from the both of us scares me. I'm tired all the time but I love my mother. Paying for assisted care will be the next hurdle. I do not know how because in searching for this type of care, I found out that it cost as much as I make an hour. Sacrificing one thing or another is what we all do. All of you out there taking care of someone with any type of debilitating disease have my admiration. Life is a struggle. Unfortunately, one of my greatest fault is seeing the glass half empty. The glass content keeps evaporating...
My husband, now 66, was diagnosed with EOAD 8 years ago. He was a university professor, but had to take early retirement. Both memory loss and aphasia have been the primary challenges we have faced, but also bouts of aggression and fairly regular agitation in the afternoon (sundowning). Today he is at the moderate to advanced stage of the disease and requires extensive assistance. I'm 62 and still working, though now half-time because of his needs, and am the sole caregiver. Day care has made it possible for me to keep my husband at home and to maintain my sanity. We have an excellent facility nearby (for all types of senior issues), and the daily exposure to other people, kind professionals, and appropriate activities has improved the quality of his life, as well. At first he went twice a week, and it was a struggle and heartbreaking. But I convinced him to do it for me. When he adapted, he moved to three, then four, and ultimately five days a week (approx. 8:00 to 4:00). It's part of his all-important routine, and he usually comes home happy. I am grateful that he can still be with me at home. Grateful for any time we still have together. Grateful for those increasingly rare moments of clarity and affection. Grateful to the wonderful people at the center. Having taken this step, we will both be better able to move on to the next stage of assisted care, when that time comes, as I know it will. But not yet. He is my life, and day care helps keep him there.
My husband is 84 and in his 5th year of dementia. He is getting more and more difficult to handle. I need a break -- but he simply refuses to go the the daycare for seniors and refuses to have a family member or friend come over while I'm away for awhile. It is so frustrating! I want to move to another house but he throws a fit if I mention it. I need for us to move to help us financially with a cheaper house payment. He says if I move he will move in with his daughter--but she doesn't want him! and I don't want him to go. He gets very angry over this and we seem to argue about it constantly. I also, have a hard time getting him to bathe--it's an argument every time--and I have to force him.
Those daycare places, the people look like they are just sitting around waiting to die. They are depressed because they do know they can't be home alone. They know they are confused. They don't have the life they once did.
Adult day centers provide personal care, supervision, transportation, meals and recreation therapy during the day, in order to help keep people living at home or with family. Seniors also get physical and cognitive stimulation through a wide variety of activities, including, exercise, art, music, sports, games, gardening, and health education.
adult day care
My husband, an Alzheimers patient, has recently started hearing sirens. If he is not watching tv, reading, listening to radio, talking, he is hearing sirens. This is really affecting his sleep and his daily life. Have you ever heard of this before and if so, is there anything that can be done about it?
My husband has been diagnosed with vascular dementia and has lost his short term memory. It was hard but I send him to day care three days a week. He does fine once he gets there; they pick him up but it is an hour drive each way which is tiring. He was diagnosed five years ago. He has lost all interest in life and doing things around the home. His beloved old pickup sits in the garage and he used to polish it and shine it; also was a snappy dresser. The biggest challenge is getting him to bathe. He is fussy about his hair and shaves everyday but have to mark the calender to get him to bathe and then a struggle. Thank goodness his personality has changed to a mild manner man. He is going to be 80 years old this fall.
I have used respite service here in home and also respite that the VA offers veterans and it is wonderful. I have used it twice and will do it again if the occasional arises. The care is very good.
I can relate to Jean & Karen's situation. My wife at age 54, is now 3 year's into the dementia diagnosis. Although an excellent
driver she failed the cognitive part of the driving test. This caused depression and a more rapid decline in her condition. She does not wish to leave our home, she is becoming less interested in social activities.
I am 58 years old, trying to hold onto a job,
and be the caregiver she deserves, which
some day's can be a challenge, but we take
only one problem at a time, and one day at a time. Respite care is in the near future. There
will be no other choice as her neurologist
said. The hardest part for me is leaving her
behind to go on with my life without her.
Memory loss is a big problem for our society.
The person having memory loss may not want to continue suffering. But, no longer able to say: Continued suffering is too much
I share Jean's concern. My husband still functions well in terms of personal care and daily routine. However, I don't feel comfortable leaving him alone more than a brief time since he has lost any sense of time. When I was at the dentist this week he came looking for me because I 'had been gone so long' - 45 minutes. Has any an idea of how to open the subject of adult day care? I should add he has few remaining interests and is becoming more withdrawn.
Talking with caretakers and professionals who work with alzheimers patients and in my own experience in nursing and making rounds for Hospice Care in the past, a few things come to mind that all seemed to enjoy and be comforted with. One suggestion is to get a cute and lifelike, but safe, baby doll with a few diapers with velcro tabs, a soft baby blanket, etc. and I have observed them cuddling, caring for these babies and re-experience what is familiar, caring for their babies. The blanket and a few diapers are often folded over and over and the caring for gives a sense of purpose and comfort. I have also given someone a stack of hand towels or washcloths and they enjoy folding them over and over and stacking them. Scrapbooks are sometimes enjoyable with pictures that they might enjoy, jog the memory, or give pleasant and warm feelings. If they gardened, for example, pictures of gardens, plants, flowers, birds and any other interest you might recall they enjoyed.
Many love and are relaxed with music to listen to. Some seem to be comforted by classical,especially the flute and the harp which stimulates brain activity and also relaxes. Others enjoy polka, or peppy dance music from their era of dancing days.
Sending your sister cards, pictures, different squares of material that feels good, has different textures and can be folded and stacked as well as the sensual experience of touch will help her senses to be stimulated.
I hope that helps. I will keep thinking.
We who live in Central Kentucky are extremely fortunate and very proud of our Day Care program which was one of the first and served as a model with endorsement by the Alzhiemer's Association and support from the Johnson and Johnson Foundation at it's inception.
Virginia Bell and David Troxel of "Best Friends" (five books with the sixth on the way) live in Lexington.
It started with a half day in a small space at the Senior Center(1980) and now have a complete program in a dedicated space at the Presbyterian church.Some of the earliest volunteers are still serving.
It is a program based on valuing each Alzheimer's participant as a person,treating them with dignity and knowing them "as a friend (each volunteer works with one "Best Friend") This model has now spread to many foreign countries through the translation of the "Best Friends" books in several languages and the methods are also now actually beginning to be implemented by non-Alzheimer's Day Care programs as well.
Allan makes a good point on May 15th. My sister was put in care facility and then the siblings were made aware of the fact that she had been diagnosed having Alzheimers. Her husband has not allowed her to be with the family for a few years. Another heartache. Needless to say I drove 500 miles to make sure she knew me and it was a difficult two days in seeing her. She knows she is in a place that won't let her out and desires to go home. Now I struggle how to communicate with her. In calling her she knows me but does not talk for only a very short time. I keep sending her notes, gum, photos. What else can you suggest if anything. I'm most appreciative of these postings. This is all new to me. Thanks.
I would like to share with our blog group that the inspiration the families, caregivers and persons who have been diagnosed with alzheimers and contribute their experiences and thoughts to all of us, that you have each inspired me to finish my education of a Masters in Nursing and a doctorate in Psychology and social wok. My focus and interest will be early alzheimer's diagnosis, research, caretaker and family/client support, and writing and education both for adults and children.
We are all in this fight together and we will progress to health and wellness, if not comfort and better management of the issues involved. So, thank you for your courage, your education through sharing with all of us, and support of each other. It does "take a community" of people to care for and hold each other up.
Something that really helped my grandma was to simply take part in different bridge groups and civic center activities in the community where she could do the things she really enjoyed. She even took different art classes and needlepoint classes which kept her engaged without giving her the impression that she was being "babysat." It was at least a step in the right direction so that by the time that she needed to start attending adult day care, she simply associated it with the civic center activities she used to do. Then, it was also easier for her to eventually live in an Alzheimer's geared assisted living facility; she was already pretty open to the idea.
Something else that helped her as her dementia worsened and she'd wander off more and more was her having an Invisible Bracelet. It's a little card you can keep behind your ID that gives medics access to whatever medical information you want them to have access to, plus it immediately notifies the member's emergency contacts. Grandma wandered for over 5 miles once in Tulsa and wound up in the hospital, but the medics were able to contact us immediately and let us know where she was. I think iB could be a pretty effective tool for all of the Alzheimer's community. Take a look at it on invisiblebracelet.org.
It is difficult for me to ask my husband to attend adult day care. He is a retired college professor and, though he failed the cognitive part of the driving test and is no longer driving, functions fairly well if I am with him which I am most of the time - I may leave him alone for an hour or slightly more and he may also walk to a restaurant or run other errands on his own.
At what point do you suggest people push for this respite?
Taking care of seniors with Alzheimer's or Dementia can be so overwhelming at times. It's a job that requires special attention and patience. So if you're a caregiver and you're feeling like you can't do it anymore at times, it's normal. You're just human after all. So there really is no shame in asking for a break from time to time. Because if you don't, chances are you'll get burnt out and experience undue caregiver stress.
You have to take care of yourself in order to take care of your loved one. So don't feel bad if you need to take a breather every now and then.
This is a great post about the many benefits available through adult day care programs. And you also bring to light a common issue – caregivers feel guilty asking for help whether by asking a friend, family member or an outside healthcare facility. The simple fact is, adult day care centers can care for your loved one while you take a much needed break. They can administer medication, therapy and serve warm healthy meals. They allow your loved one to enjoy some social time with friends and if suffering from dementia or Alzheimer’s, they can receive the best care and therapy available by way of an adult day care center. Active Day (http://www.activeday.com) has a nationwide network of medical adult day care facilities and would love to help you and your loved one through our highly trained, caring staff.
The local branch of The Alzheimer's Association here on Long Island keeps promising to start a support group for those in early stages/EOAD ... but that hasn't happened yet despite my trying to push them to do so for almost a year! They provide tons of daycare opportunities, tons of caregiver support groups for those in moderate to advanced stages. But for those in early stages/EOAD who need support services the most ... and for their spouses ... nothing. I'm now in the process of working with several non-traditional organizations that have social workers provide caregiver support in other areas to consider starting support groups for early stage AD/EOAD. I've offered to serve as facilitator for the spousal support group if they'll just provide a social worker for the AD group. I will not let this issue go away ... it's too important and if The Alzheimer's Association chooses not to get involved, then hopefully other organizations will fill that gap.
Allan, I totally agree with your post. Many doctors and families won't say the "A" word and this leads to lost opportunities to learn about the disease before you are in the middle/end stage and to make plans while the patient is still able to make decisions. Our primary care physicians need education on how to speak to patients and families about this condition truthfully. There is no such thing as having a little Alzheimer's, yet I can't tell you how often I hear this. It's like someone saying they're a little diabetic or a little pregnant. You either are or you're not. We're doing our patients a disservice by not providing them at the earliest stage with guidance to help them cope with the diagnosis, make plans together while they can, ask questions and have a support mechanism in place to rely on as the disease progresses. We've focused our attentions toward end stage aspects of this disease and now should refocus our efforts to help patients and their families come to grips with the initial diagnosis.
Daycare programs are excellent options, especially for those with moderate to severe AD. I just wish AD caregiver organizations such as The Alzheimer's Association would realize that the most frightening time for this disease is when those diagnosed with AD are first diagnosed. They still have much of their mental functioning intact but are worried and frightened about what is happening to them and need weekly support groups much more than they need daycare activities. They often continue to function well most of the time but are becoming aware of how their increasing memory loss, disorientation, misplacing objects ... and all those other symptoms we are so well aware of ... are affecting their lives. Similarly, it is at the early stages of diagnosis when their spouses are most in need of weekly support group services so they can learn better how to deal with what they are going through, to learn about community and other resources available to them, learn about making the necessary end of life decisions if not already made regarding wills, power of attorney, etc. while interacting with other spouses facing similar situations. Sadly, such opportunities are currently few and far between across this country.
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