MS steals movement, thought, and understanding, until complete independence is no longer an option. We still have some abilities and, in order to take advantage of them, we need to understand the kinds of help required. Caring and living arrangements go hand-in-hand towards contributing to the quality of life for the aging person with MS.
The goals of a caregiver may include:
- Care for MSer's daily physical needs
- Maintain quality of life and attitude for both carer and MSer
- Allow MSer to maintain a certain activity level so they can participate and enjoy life
- Communicate goals and current activities
- Prepare dinner, select clothes and help with dressing
- Other duties as required
Caregiver duties are different depending on the residence. Having a caregiver in the home allows more flexibility than in a nursing home where each carer must tend to a number of people. The caring/residence solution may change over time with circumstances such as ability levels and finances.
The following are some of the options available:
Usually the preference for the person with MS and the family is to stay at home. Staying home is familiar and comfortable, but with advancing age and advancing MS may require help. Staying home may mean living in a house lived in for years, or even a sibling's or child's house. The first step is finding the home. The next step involves the caregiver. Often people become caregivers, not as a professional choice, but as a result of family circumstance and love.
When staying home, the caregiver is often a partner or other family member or friends. The best part of spousal caregiving is mutual care, knowledge, and understanding. The problem with spousal caregiving for an older person with MS is the spouse is probably older as well, and not as able to complete some of the tasks. In addition, caregivers have a risk of depression, and caring partners have a double risk. Extra help is often needed.
Adult children, siblings, and other family members and friends may pitch in or handle the job all together. However, staying at home does not necessarily mean the caregiver is part of the family. Long term carers and part time carers can step in.
In an earlier article I wrote about people caring for MSers. "Being a caregiver for a chronically ill person is a burden and MS caregivers experience high levels of distress and low quality of life. A highly stressed caregiver is not a healthy person and is likely to make a mistake. Caregivers deserve a break and hopefully it comes before they reach their breaking point, but that break requires more than just a schedule note. The support system, in turn, must be supported."
Staying at home successfully relies on a healthy, compassionate caregiver. Every caregiver, professional or family member, needs respite sometime, for a few hours, days, or even weeks. Respite Care, "a temporary substitute" is supported by The Lifespan Respite Care Act, passed and signed into law in 2006. It authorizes funding and training for respite care. The intention is to strengthen support systems and improve the relationship between the caregiver and the care-receiver by revitalizing and avoiding burnout. After more than three years, funding is yet to be provided.
Adult Day Care
Adult Day Care has been provided for elderly people as well as specifically for Alzheimer's patients. Some MSers have specific needs, too, that may not fit in with a standard adult day care center. There are a few day care centers set up for MSers. MS day care is set up to house a small number of people with functional impairments, providing health, social, and other support services in a protective setting.
The U.S. Department of Health and Human Services published a regulatory review of adult day care centers by state. Some states have regulations, but others have actual, working centers. Here is an example of an adult day care set up specifically for people with MS in Colorado. Caregivers are actually volunteers and interns guided by MS experts.
The differences between aging and MS in last week's article tell us why a standard Nursing Home environment is not necessarily the best answer for an aging MSer. I asked a friend who has worked in several nursing facilities what instructions were given concerning each person's particular chronic condition. She said no information was given unless there was a specific question. Now that is only one person's testimony, but she has widespread experience.
Our friend djax59 right here on Health Central tells us "I worked in nursing homes and saw a lot of people who were just there for the check and didn't really care about the people . . . that when in a semi-awake or conscious state, moving them causes a lack of equilibrium and a feeling of falling - the patient is not necessarily trying to beat the crap out of you. . . . that people with small bladders on Lasix are not (just pressing) their light every 5 min. just to get attention."
She suggests the carers "try to give them their dignity - they are adults with problems, not babies, and should be treated as such." djax59 continues "they should be taught in class." The National MS Society (NMSS) has such a class scheduled March 31, 2010, followed by a broadcast class for long term caregivers.
The National MS Society document called Nursing Home Guidelines and Recommendations by NMMS can be downloaded from Organized Wisdom
Caregivers, unlike in the home, are not hand-picked by the person being served. Most of them are certified nursing assistants who may or may not be working in the same area each day. Doctors and nurses are on call, so a nursing facility may be the answer, especially when the home caregiver is totally overwhelmed. These people are capable, but their schedules leave little room for flexibility.
Looking at just these three options, it is little wonder staying at home is preferred. There are other options such as assisted living facilities, community services, group homes, or moving to less expensive areas or countries. Regardless, it is clear that research and special considerations are needed.
As more baby boomer MSers age, more solutions will present themselves, but only if we become involved and do something about it. What other solutions have been found and are being used? If we don't come up with an idea we are excited about, we will be stuck with something we may not be willing to try. And while we are thinking, we cannot forget the caregivers who will make all the difference.