Nursing Home Care
MS is a disease that can progress to a point where, not only is 24-hour care necessary, but 24-hour skilled nursing care is essential. At this point, the needs of the person with MS frequently exceed family resources. Significant cognitive loss, incontinence, nutritional compromise, and/or respiratory issues require complex clinical care.
Care Givers may no longer be able to carry the burden for a variety of reasons, even with additional assistance at home. In this section, we take a closer look at nursing home care and what to anticipate if that choice needs to be made.
As someone has said, caring for a loved one with progressive disease is a marathon. It can take place over the course of many years, and often things come along that require a change to be made. This can be due to many reasons. These are just a few of them:
- Responsibility for other life roles such as parent, partner, employee, etc. may not be able to be balanced with the weight of care any more.
- The health of the caregiver may be deteriorating.
- A change in who is living in the family may impact the amount of family help available.
- Care Givers may be too young to take on additional responsibilities, or Care Givers may be aging and no longer able to carry the burden.
- Safety and isolation of the person with MS at home may become an issue.
- The clinical care becomes more specialised and complex, beyond the capabilities of the family.
- There is a lack of support services from the community.
Even beyond these very specific situations, the many years of caring for a person with progressive MS can deplete a family’s emotional and physical energy. It is at this point that exploring nursing home care can become a reasonable and viable course of action, both for the overwhelmed family and for the person with MS.
The fact that your loved one is receiving care in a nursing home does not mean you are no longer involved in their life. In fact, many family members find that their relationship improves when all of their energy is not being spent meeting heavy daily care needs.
Many family members visit the nursing home frequently, sometimes to help with tasks like feeding, but oftentimes just to visit and be together.
You can stop thinking of yourself as a Care Giver all the time, and go back to being a husband/wife/child. If you are feeling less stressed, your time together will probably be less stressful as well. Remember, also, that placing your loved one in a nursing home does not necessarily mean that they will never be home again. Many nursing home residents return home for holidays and special visits. There are indeed many ways you can continue to be involved.
It is true that a nursing home cannot provide the individualised, one-on-one care that you have undoubtedly provided over the years. No matter what the staffing of the nursing home facility, that level of care is not possible at all times. However, there are things that can be gained as well.
Nurses are now available 24 hours a day, and other health care professionals can be involved more easily. It is a busier place, with more activity and opportunity for socialisation.
For someone who has been basically isolated at home, or perhaps even confined to bed, this environment can be more stimulating. You can play a pivotal role in helping the nursing home staff become educated about MS and sensitive to your loved one’s needs.
First of all, you are probably going to be at the facility regularly, and if you have concerns, you can always speak with administrative staff or ask for a family meeting. If you cannot get things resolved you have recourse to HIQA Remember, you are a consumer.
If the facility continues to be deficient, you can always seek a transfer to another facility. It is also important to know that more is being required now of nursing homes in terms of providing quality, individualised care than ever before. They are moving as an industry to become more resident focused, less rigid, more home-like, more focused on quality of life.
This is happening for several reasons. One is that regulators are becoming more demanding, and that the results of facility surveys are now being posted publicly. Another is that the consumer voice in long-term care is becoming louder and more effective. There is no question that the industry is under significant pressure due to the appeal of assisted living and expanded home and community based services.
Nursing homes are facing competition, and competition is good. One result of this competition is that they are targeting certain populations to serve, and people with MS are definitely a potential market.
Nursing Home Support Scheme – Fair Deal
The Nursing Homes Support Scheme, also known as the “Fair Deal” scheme is a scheme of financial support for people who need long term residential care services. Under the Nursing Homes Support Scheme, people make a contribution towards the cost of their care and the State pays the balance.
The Nursing Homes Support Scheme is administered by the HSE in line with the legislation (Nursing Homes Support Scheme Act 2009) and within the resources made available for the Scheme. Applicants cannot avail of State funding for a nursing home place prior to receiving approval of their Fair Deal application.
Under the Nursing Home Support Scheme, prices charged by Private Nursing Homes are agreed between the Private Nursing Home and the National Treatment Purchase Fund. A weekly price for the cost of care in Public Homes is also provided.
More information on the Nursing Home Support Scheme, including details of how to apply, is found here