Questions & Answers, Our Way
Insightful, Conversational, Encouraging,
Long-winded, and from Experience
Help Managing the Home
Can a person with CFS or FM benefit from using...
a Personal Assistant?
Home Health Care?
A Cleaning Service?
What's on the Web
See also: Practitioners Page: Help Around the House
See also: Practitioners Page: Cognitive Rehabilitation
See also: Resources Page: Cognitive, Memory Section
Hiring Organizers, Assistants, House Cleaners, Home Health Aid
Q. Because of low energy, high pain, cognitive problems, etc., I'm so behind in my paperwork, medical filing, taxes. My dishes are piling up. My mountain of laundry is loads high. I can't seem to cook and shop for myself effectively. Does your group have any experience with getting help around the house?
A. Professional Organizers
I've worked with 3 great people who are Professional Organizers:
Jill Lawrence, aka: Jill of All Trades, in DC: (202) 544-5455. Jill was my first organizer. I like her enormously and she helped me get rid of stuff invading my space, which is really, really hard for me. Jill is so creative and imaginative, she's a pleasure to be around. She also helped me enormously by writing a "witness" statement I submitted to Social Security about how little energy I had when she worked with me, other observations comparing my problems to those of other people with illness she's worked with. Paper management is not her favorite thing to do, but she has good ideas using accordian folders and post it notes instead of labels, etc. She hates hanging files and I can't function without hanging files, so she recommended:
Joyce Hedgepath, in Bowie, 301-249-1347. Joyce sees her work as a calling, is conscientious, thoughtful, compassionate. She was extremely patient and savvy at explaining the advantages of getting rid of as many things as possible, still hard for me. When I explained my dream filing system which was described in a book, Joyce read the book before our first visit, made labels for me at her home, etc.
Two nicely done pages on Joyce Hedgepath's website, Back to Order, are the
About page: http://www.backtoorder.com/aboutus.htm
and one on stopping junk mail before it starts http://www.backtoorder.com/junk.html
When my latest IRS filing crisis arose last March, Joyce was going out of town and I called at the last minute, so she recommended:
Patty Stewart, also in Bowie, 301-805-9355. Patty is great with paperwork, attitude very like Joyce, compassionate, thoughtful, wonderful with paperwork, great listener, has done lots of work which contributes to her ability to help with organizing paper. Her ideas for organizing my house are great, too, but, not my current priority.
Organizing seems to come naturally to all three women and seems to be work they enjoy greatly.
Organizers sometimes offer ongoing, regular visits for keeping up with paperwork or de-cluttering. I need ongoing help to keep up with filing so tax papers will be accessible by April's tax filing deadline and bills will be paid in a more timely manner and my desk will remain usable rather than covered to the ceiling with piles of paper and stuff.
For more Professional Organizer options, use the NAPO (Nat'l Assoc. of Prof. Organizers) website: http://www.napo.net/
Receiving help is, in itself, a real challenge for people with our conditions, judging from my experience working with 6 Professional Organizers and 2 housecleaning helpers:
The priorities of Professional Organizers or other helpers may be quite different from your own. I've learned to explain to my helpers how frustrated they're likely to be when they're finished for the day and my place is still a mess. My priorities are being able to afford the help I need and overdue paperwork, dishes, laundry, putting out trash, etc. For instance, I have a helper, provided through MD's Developmental Disabilities Agency, who is anxious to accomplish projects which, unfortunately, are overwhelming for me. Because things are in such disarray in my home, I must also work when I have help, directing what is trash, what's not (it's not always obvious), where things go, how to place dishes for least waste of time & energy in dishwasher, etc. When I've succumbed to the needs of my helpers, I'm always glad the work is done, even when overwhelmed. I tell them all, "I'm happy you're here, I'm grateful for the help, and, I'll be so happy when you leave, so I can rest again."
I can't afford to pay a Professional Organizer to do dishes and laundry. Often, Patty works in my kitchen, frustrated to be doing nothing while I'm in the office. But, I need someone to sit with me to do paperwork, even if there's nothing to do but watch. This is a common need called "Body Double", according to Joyce Hedgepath. It is work to direct help, to explain why I need someone to sit with me, which sounds so bizarre. But, if Patty, or Joyce or Jill, don't sit by my side, I won't do the work because it's too hard, too exhausting, causes too many symptoms. If someone is working in another room and needs my attention, I can barely stand to answer questions - I want to scream rather than answer and sometimes I do. Multi-tasking causes an inordinate amount of stress for people with CFS/OI/FM. Who wants to feel or act that badly for any reason on purpose? Frankly, I'd rather be watching tv in my recliner instead, if only that paid the bills or got me my IRS refunds.
The very best, most compassionate help is stressful, presenting many challenges for me and my organizers/helpers. A written list might work for some, but, in my case, would be so detailed as to be unreadable by any but the most obsessive person.
When working with professional help around the house, make it as good an experience as possible by preparing for the day with rest, eating good quality protein rather than carbohydrates, drinking plenty of water and taking mineral/electrolyte supplements, and anything else you normally do to take care of yourself.
Amazingly, despite the many challenges my conditions and personality present, I've been able to find help, and more amazingly, they come back again. Thank Goodness! I'm so grateful to Joyce, Jill, Patty and Jan.
Toni, December 2006
A. Personal Assistants - Local
The ENDependence Center of Northern Virginia, Inc. (ECNV) has PAS:
A Personal Assistance Services Program which provides four principle services:
Personal Assistant Services (PAS) Registry
Department of Rehabilitative Services (DRS) PAS Program
Dept. of Rehabilitative Services (DRS)/Voc Rehabilitation (VR) PAS Program
Service Coordination for the Medicaid Consumer-Directed (CD) PAS Waiver
Maryland's Attendant Care Program (ACP)
Virginia Personal Care and Personal Assistance Services
State by State Personal Assistance Services at PAScenter.org
Administration on Intellectual and Developmental Disabilities (AIDD)
"Applying to AAID for home help can take a long time. Worth it." -Toni
A. Personal Assistants - General
[Source: The CFS Empowerment Project. Renee Taylor, PhD]
[Applies to Fibromyalgia and other conditions as well.]
Anyone can hire someone to assist him or her with a specific task (e.g. housekeeping, moving heavy objects, yard work, cooking, accounting). However, some individuals have been trained specifically to assist people with disabilities with activities of daily living (e.g. grooming, cooking, light housework) and these people are called "personal assistants". A Personal Assistant can help someone with CFS stay within their energy envelope, or help them focus on meaningful activities rather than everyday tasks.
Individuals who are designated as disabled under the Americans with Disabilities Act may be entitled to receive various services to help improve quality of life.
Services are provided on a sliding fee scale - fees that are based upon the income of the consumer applicant. The Illinois Department of Human Services/Office of Rehabilitation and the Mayor's Office [in Chicago] for People with Disabilities have income limits for eligibility.
The services provided by your Personal Assistant depend largely upon how much you can do for yourself and how much additional help (e.g. from family or friends) you are perceived to have available to you. A person with Chronic Fatigue Syndrome applying for Personal Assistant services will have to submit a letter of medical necessity for services from their physician which details their Chronic Fatigue Syndrome and what limitation it places on their activities of daily living (ADLs).
Call a Center for Independent Living near your neighborhood or places such as the Mayor's Office for People with Disabilities, or your local Department of Health Services/Office of Rehabilitation Services. The Mayor's Office for People with Disabilities and the Department of Health Services/Office of Rehabilitation Services will send a case worker out to your home to determine how much residual functional capacity you have and who else is around to help.
Sources for Potential Personal Assistants:
Assisted Living and Independent Living Groups, Facilities
State Departments of Rehabilitation/ Human Services
Local Government: Offices of Disability
Private Homemaking Services
Check the yellow pages under homemakers, maid service, concierge service, go-for service, errand runners, etc. depending on what services you need. These services are usually bonded, trained, more reliable than personal assistants or volunteers- they are also more expensive.
Methods for advertising/publicizing your need for a Personal Assistant
Word of mouth
Community bulletin boards
Classified sections of Volunteer Recruitment Newspapers
The Search for a Personal Assistant
The first step to take towards successfully obtaining the services of a personal care assistant is to go to the nearest Center for Independent Living in your community. As an officially registered consumer of this center, a person with CFS can obtain the training necessary to initiate and complete the personal assistant hiring (see sample ad below), training, and retention process.
Decide what you want to tell a service provider or gate-keeper agency about your impairment and how it affects your need for their particular service.
Go to your healthcare provider and get a detailed letter about what your medical condition is, stating it is an impairment that affects activities of daily living, and that it is a permanent and totally disabling condition.
Get your disability certification from one or more of the following agencies in the order they appear:
Your treating physician
Social Security Administration
Your state's Department of Human Services/Office of Rehabilitation
Mayor's Office for People with Disabilities
Describe your worst day not your best day whenever anyone asks you to describe your day. If you describe your best day, you will always be judged as if that description covers your worst day. This may be used as a basis for denying you a disability certification for the purpose of obtaining a personal care assistant.
Be careful when talking to the case managers form these organizations. If someone asks you, "Can you put on your shoes?", they may actually be asking about difficulties putting on clothes and doing your hair on an ongoing basis. If you answer, "yes, I have no problem putting on my shoes", you may be stating that you really do not need any assistance.
When you are being assessed, have someone with you at the appointment so that they can attest to your everyday inabilities and act as a back up to what was said and done.
If you are denied services, ask your case manager to put an explanation in writing for you. Also obtain a written appeal procedure. Each time a person with CFS receives a denial or rejection, he or she will have to start the process again.
Wanted: Personal Assistant
Person with Chronic Fatigue Syndrome (CFS) needs help with:
Light Housekeeping (dusting, vacuuming, laundry, mopping, light cleaning)
Running Errands (grocery shopping)
Minor Home Management Activities (to be negotiated)
Various Miscellaneous Activities (to be negotiated)<>
Personal Care Activities
Volunteer and/or paid experience helpful, but not necessary.
Instruction and detailed explanation of duties and basic CFS awareness will be provided.
Contract to be negotiated.
Contact:_______________________________________ for further information
If you do not want to disclose that you are ill on your ad, you do not have to and can leave that information out. Most people give their home phone number as a contact, however, you can also leave an email address or fax number. You may choose to post your ad in more trusted places, such as churches, high schools, universities, or community centers, if you are concerned about security.
A. Home Health Aid (See also personal assistant above)
By Pat Kaufman
Originally published in The CFIDS Chronicle - Spring 1996
Reprinted with permission from Take Care!, published by the
National Family Caregivers Association (NFCA) at 800/896-3650; 301-942-6430
What Is Home Care?
Home care is a general term that represents a wide range of services performed in your home to help you and your care recipient. The skills and duties of home care personnel vary, but all have one thing in common -- they make it possible for care recipients to remain independent and stay at home in a safe, monitored environment. In the process, they also provide caregivers with a chance to replenish their depleted physical and emotional reserves.
Home care personnel include:
Finding Home Care:
The Medical Team (Northern VA, TX, LA, MI)
Ready Hands: Arlington, Fairfax, Alexandria, VA
Right at Home of Northern VA (Right at Home National)
I Care, Inc. (Hourly and Live-in care)
A. Maid Service, Housekeeper, House Cleaning Service
As one of our speaker's once said,
"You can't start getting better, until you stop getting worse." - Mitch Lambros
One of the best things, though it was really haaaarrrrd, was to realized I can't clean my house and continuing attempts were making me more ill. All the bending, and the carrying, and the pushing of even a self-propelled vacuum, were giving me more fatigue than the activity deemed, more thinking problems, more irritability, more trouble. Smelling even mild cleaning solutions, even natural ones, was too intense. And when I had to stop early, before a job properly started, never mind finished, I had to deal with all the extra "I'm such a failure." feelings on top of it.
Inviting a stranger in to clean was traumatic, too. I knew people would judge it with:
Why can't you just do it a little at a time?I knew I would judge myself: Who am I to hire a maid? No one in our family ever did or would (or could!).
Can you really afford it?
Can you trust people not to take things?
Do you really want someone touching all your stuff?
I am very fortunate to be able to afford a cleaning service. My husband and I were a little nervous about it, but we tried it. I still beat myself up for a few years about whether that was a good use of money, but he immediately liked it. Now, years later, I still can't do all that bending, etc., and I'm so grateful for the help. Its fantastic!!!!! I feel fabulous about the decision, too, because I really needed the help and I am worthy of help, and people's judgments aren't my concern anymore. There have been problems -- I've had to switch companies a few times, and it is really hard to de-clutter the day before so you'll receive more cleaning -- but overall its been a wonderful gift to myself and my family so they get more energy for fun stuff from me. For the last few years, I've been pleased using the national company Molly Maid, http://www.mollymaid.com/, (800) 665-5962, the office in Western Fairfax Co, VA, (703) 631-9345.
Things to consider:
The price per visit is usually lower the more frequently the service comes, but it adds up to more over the year since have it more often. I've asked for monthly cleaning, and I pay a little more per time for it. The service wanted it to be every 4 weeks, but I needed it to always the day before the support group meeting at my house, the Monday before the Second Tuesday. I have to call them with the dates every few months since that's too hard for them to keep track of, but they want my business so they put up with my special and respectfully asked request.
Maybe you want help with one overall cleaning and then maintain it yourself. First time - once only cleanings are usually more expensive - to get a residence into good shape for regular cleaning. Once, every six months, even at the higher rate, would be less expensive than every month or two weeks.
Even with a cleaning service, a housekeeper/maid, any kind of help, it is not going to be you doing the thing with your idea of how to do it in your way. Give helpers the freedom to do what they do best in the way they do it best, or just advise them to not do the things your are too particular, highly perfectionist about. I have a couple of rooms I just can't make the path wide enough, the horizontal surfaces clear enough, for anybody to vacuum or dust, so I say don't do those rooms or only do this side. On days I can't clear enough clutter as last month and don't get as thorough of a cleaning job, I try to focus on the part I could do, that overall - I'm still better off than having tried to clean it myself or ignore it for years.
What's on the Web
"Then we talked about what bothered him most about my being sick and his responses surprised me — an always-messy house, a lousy social life and my tendency to overdo and then relapse. Now we simply look for things to do that aren’t tiring, like movies, going to museums (we bring the wheelchair for me) and going for long drives together. We got a cleaning service to come in every other week, making the house livable again. And I vowed to work on resting and not overdoing it. It’s made a small but significant difference. We feel like we’re “handling” it. And, hey, life isn’t so bad! The best part: I don't think often about this stuff anymore."
You are not able to do your household chores in the way you are used to doing them. One possible solution is to spread the chores out over several days rather than doing everything in one day. Or, you might still do all your chores in one day, but in small chunks, taking rest breaks periodically. Both of these solutions are examples of pacing, which is discussed in Chapter 10.
Another possible solution is to clean less frequently. (One person wrote she now views dust as something that “protects my furniture.”) As with some of the solutions for holiday celebrations, this involves changing your ideas of what is appropriate. Two other solutions involve getting help from others. You might ask family members to share in the work. For example, children could clean their own rooms and do their own laundry. Or, you could hire a cleaning service.
A final possibility is to move to a smaller home. If you saw housecleaning as one example of how household responsibilities in general had become too great, you might consider simplifying your life by moving to a home that is easier to maintain. People in our groups have used all of these strategies.
- Patricia Seay, "a woman with fibromyalgia who has been there, done that, and got the t-shirt." She created a web site with the hope of helping people in their quest to manage their disease and improve their daily lives. Includes this and more about cooking, shopping and schedules:
Deep cleaning the house: You may need to take a serious look at hiring someone to deep clean your house (for help with daily, general upkeep of the house, read the preceding paragraphs). Where I live, $30-35 a week will pay for someone to vacuum, mop, dust, and clean the kitchen and bathrooms (in a 1,400 square foot house). I had always thought hiring a maid was something that only rich people did. Then fibromyalgia got me down in a headlock, and I realized the only way my house was going to get clean again was if I did the unthinkable -- hire help on a weekly basis. This move saved my sanity. And I can tell you, $30 a week is a cheap way to buy sanity.
Use the workcamp program - One to One, The CFIDS Chronicle
"Mothers with fibromyalgia expressed a need for assistance with childcare and housekeeping significantly more than controls in Group B"
Many church denominations throughout the country participate in the Ecumenical Workcamp Program for teenagers. The church has a list of teens who will work to earn money to pay for a week in the summer repairing houses for the poor. You pay very little for a huge return. For us, they grocery shop, clean our house and yard regularly, befriend our son who also has CFIDS, run errands, cook, wrap Christmas and birthday presents and much more. These teenagers have been exceptionally reliable and bring us much joy.
Gracie McNiff, Burke, Va. - a CFSupport member!Updated for our group, 12/06:
I've asked one of the teachers at Paul VI High School [in Fairfax, VA], who helps us for a couple of hours on Sundays, to update the Work Camp situation for you. Our helpers are now graduates of the program and the teens we do have helping us live here in the neighborhood, but do not belong to Work Camp.
At last count, we have seven helpers who come for a total of ten hours a week to do laundries, clean house, and cook meals for us. We are truly blessed.
We also highly recommend The Medical Team, Inc. (we use the Annandale office) to give [our family] a break a couple of days a month. Expensive, $17.50 to $18.50 an hour, but given Gracie's condition, we need that level of help.