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.