Online and delivery help
Many services and businesses offer home delivery and pickup, or online or mail order services: pharmacies, groceries, laundries and dry cleaners, holiday and birthday shoppers, clothing and electronics from department stores, movies and CDs, etc. Ask a good friend to investigate these services and line them up for you. Using these efficiently can save tremendous amounts of time (and gasoline) that make it worth any extra cost.
The most efficient grocery delivery is to place a large order or a regular weekly order, rather than calling every time you need a gallon of milk. It’s possible to order online from local supermarkets or from national services that ship within 24 hours.
Explain your situation to businesses such as car repair shops, etc., and they may be willing to pick up and deliver.
Think Mobile, MDA/ALS Newsmagazine, September-October 2009
Volunteers can be found to remodel a room, build a ramp, widen doorways or install a rollin shower. Put the word out among friends and start the search for handymen or contractors who will donate labor and/or materials. Independent living centers (CILs) or home health agencies may know of someone who will help. The Homebuilders Foundation exists in several states as a philanthropic arm of the industry; they may help locate a volunteer contractor.
If it’s necessary to move in order to accommodate the person with ALS, or for financial reasons, the state’s Social Services or Family Services Department may know of a program to help find housing. Some states are committed to helping people stay in their homes. (Also see Chapter 7 for information about reverse mortgages and low-interest loans for home modification.) CILs also have leads on low-income, accessible housing.
Elder law attorneys or legal aid organizations can help with rental disputes and agreements.
See Chapter 2 — Accessibility at Home.
A contractor’s organization may donate labor; also look for a local Home Builders Foundation.
“I have been an R.N. all my adult life, eight years as a hospice nurse, yet never encountered ALS until my dad was diagnosed. Look at the years I didn’t have a clue.”
“My sister seems to feel better when she can talk to someone other than family and close friends, such as care workers, the hospice staff and even the chaplain that visits her a few times each week. She can talk openly with people like that, where with family, we always want to hear what WE want to hear, and not always what she wants to say, and that is natural.”
“I tell patients, ‘I’m not here to replace your physician. I’m here to augment your physician.’ I really encourage patients and family members to call me if they have a concern or they have a worry, if they have a problem. I don’t want them sitting on it and not contacting us and just getting anxious when maybe there’s a pretty easy solution. If it’s a more complex issue, then the patient needs to be seen sooner.’”
An MDA clinic or MDA/ALS center can refer your family to a range of needed assistance. Medical care is coordinated, and clinics are directed and staffed by neuromuscular disease specialists. The clinic or center can refer you to knowledgeable therapists, social workers, medical specialists and others. The local MDA office can point you to community services such as home health agencies, equipment vendors or independent living centers.
The social worker at the MDA clinic provides help in navigating the health care system, and is a great source of referrals to family counselors, in-home help agencies and assisted living facilities. The social worker is the family’s advocate or case manager, who can help coordinate the various types of care needed or being received.
However, in the current health care system, families coping with ALS need to be their own advocates. Dealing with medical professionals outside the MDA family, such as pulmonologists, skilled nurses or therapy agencies, can require that families know what’s expected and needed, and be prepared to educate the professional.
Understand what each person does in the medical setting so you can ask the right person. Get to know office staff so they’ll be more receptive. When asking for information, be firm about what you need and strive to remain calm no matter how frustrating the experience.
Remember that doctors are legally and professionally responsible to your loved one, not to family caregivers, unless a caregiver holds medical power of attorney or durable power of attorney. Your loved one must communicate to the doctor that the caregiver is to be part of exams, tests, discussions and decision making.
To become informed about providing physical care, ask occupational therapists, physical therapists and others how to do basic things: range-of-motion, transfers, vent maintenance, tube feeding, basic nursing skills, etc. Manufacturers’ representatives should be willing to answer questions about equipment, and demonstrations often are given at support groups. Some hospitals teach these skills, as do some home care and hospice services. The American Red Cross has a curriculum on family caregiving skills training.
To learn about medical issues, do online research or even take a brief course. You’ll be able to ask the doctor more knowledgeable and pertinent questions and gain a higher level of information.
One woman with ALS wrote up a detailed explanation of the disease, and how it did and didn’t affect her. She included her needs and expectations for caregivers. Everyone — aides, physical therapists, nurses, volunteers — who dealt with her was required to read the material. Professionals who thought they knew everything about ALS learned more and got a better understanding of the person’s individual needs.
Educating staff about ALS and its effects is especially important when the person is in the hospital and is being treated by nurses, residents and others who may never have helped an ALS patient. A caregiver may have to get “politely pushy.” It’s better to be considered obnoxious than to let your loved one get the wrong type of care. Ideally, staying in the hospital with your loved one ensures their specific needs are made known and accommodated.
Keep medical information organized and complete so that each new person you see at the clinic, hospital or in your home easily can find answers and data.
Many hospitals have a patient advocate who speaks in behalf of patients in order to protect their rights and help them obtain needed information and services. This often is a nurse, social worker or other health care provider. If there’s an ongoing problem with hospital treatment, ask to speak to the patient advocate.
Social Workers Offer a Wealth of Resources, MDA/ALS Newsmagazine, September 2007
How a Nurse Practitioner Fits into the Health Care Puzzle, MDA/ALS Newsmagazine, November-December 2006
ALS Case Manager Touches the Lives of Many, MDA/ALS Newsmagazine, February-March 2005
Support, Empowerment Keys to Social Worker’s Role at MDA/ALS Center, MDA/ALS Newsmagazine, June 2003
101 Ways to the Best Medical Care, Charlotte E. Thompson, M.D., Infinity Publishing, 2006
Hospital Survival Guide: 100+ Ways to Make Your Hospital Stay Safe and Comfortable, by David Sherer, M.D., and Maryann Karinch, Claren Books, 2003
Get Palliative Care. Includes a palliative care provider directory, a detailed description of palliative care, direct links to palliative care-related organizations and more.
National Association of Hospital Hospitality Houses (NAHHH), (800) 542-9730. NAHHH represents organizations that provide lodging and service for families receiving medical care away from home.
National Patient Travel Center, (800) 296-1217. Helps locate air transportation for patients who need distant specialized medical care.
Patient Advocate Foundation, (800) 532-5274
Visiting Nurse Associations of America, (202) 384-1420
Muscular Dystrophy Association — USA
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Chicago, Illinois 60606
The Muscular Dystrophy Association (MDA) is a qualified 501(c)(3) tax-exempt organization.
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