A care giving journey starts after the symptoms of Alzheimer’s or Parkinson’s become noticeable to others, and especially after the patient receives the diagnosis. This journey generally begins at home. Eventually the care needs may exceed the ability of the family to provide or pay for care at home, and then the person would move to assisted living or nursing home care.
Being the Caregiver
Caring for a person who has Alzheimer’s or Parkinson’s disease means adapting to the person’s needs over time. At first, only modest assistance may be needed. Later, more assistance will be needed. Perhaps clothes will need to be laid out, or the person will need help with dressing. You may prompt his or her memory by placing notes around the house. Eventually you may need to change door locks if your loved one tries to wander and turn down the water heater temperature in order to avoid burns. Care may progress to assistance with toileting, feeding, bathing, and making sure that the person does not fall and get injured, and even to full-time observation.
If you are the caregiver for a person who has Alzheimer’s or Parkinson’s, you should become familiar with the available respite care programs in your community. Designed to temporarily relieve family members, these programs provide a respite caregiver who comes into the house for a few hours, allowing you to go out, shop, see a movie, or just relax on your own. Taking care of yourself is the only way you can continue the care for your loved one.
Adult day care programs are another alternative for giving respite to caregivers. These programs provide socialization and therapeutic activities in a safe environment at a church or dedicated facility. While there is generally a charge, often the charge is reduced or even waived depending on financial circumstances.
The best way to start with getting help for being a caregiver at home, and accessing respite and adult day care programs, is to contact the local Area Agencies on Aging or the local chapter of the Alzheimer’s or Parkinson’s Associations. You may also find helpful suggestions from local nursing homes or other families who have had similar experiences.
Many people supplement the care at home with paid caregivers, or get all of the at-home care through paid caregivers. Medicare generally does not pay for home health care for custodial care, which is the type of care a person who has Alzheimer’s or Parkinson’s usually needs. Many states do have a Medicaid waiver program that lets people who need this care remain at home (and avoid the expense of a nursing home). This would require meeting the income and asset tests of your particular state for Medicaid qualification for these care at home programs. Many of these programs have long waiting lists that can delay participation.
Sometimes a family member may be paid to provide care for the person who has Alzheimer’s or Parkinson’s. In those situations, be sure to consult with an elder law attorney in your area, because there are tricky tax and Medicaid gifting issues that can trap the unwary.
Care at an Assisted Living Facility or Nursing Home
There are various options for care outside the home, which will depend upon the level of care needed for the person who has Alzheimer’s or Parkinson’s, the available care in the community, and the financial costs.
Assisted living facilities are often an appropriate choice for people who have Alzheimer’s or Parkinson’s when skilled nursing is not needed. This can be a good first move for the person who has the disease, as well as for the family caregivers who can no longer provide the care needed at home without ruining their own health.
When considering assisted living, pay close attention to how a person who has dementia will cope. Many people who have dementia become agitated and need a safe place to go outside their room. Look for a facility with at least one enclosed outdoor area like a courtyard and also a common space indoors where the resident can wander safely. In addition, look for facilities that offer a special care unit that is dedicated to residents who have dementia, even if not currently needed. These dedicated units will be more secure than a mixed setting, and the staff will be specially trained for working with people who have dementia and provide more extensive care and appropriate socialization.
Payment arrangements will vary by community. Many will charge monthly, without any long term commitment. Other communities will require an up front charge, and for communities that are part of a CCRC (Continuing Care Retirement Community) in particular, the up front charge can run into the tens or hundreds of thousands of dollars. Be sure to look for a community that meets your financial ability to pay, both now and in the future as care needs arise.
Sometimes an assisted living arrangement is desirable, but the family will be unable to pay all of the cost. In some states, there may be government benefits to assist with the cost of care, although generally Medicaid is reserved for nursing home care rather than assisted living. Veteran’s benefits may also be available to help offset some of the costs of assisted living care. Most families pay for assisted living privately, either out of their own funds or through long term care insurance that was purchased previously when the resident was in good health.
The progression of the Alzheimer’s or Parkinson’s may require skilled nursing care at a nursing home. Making the decision to place a loved one in a nursing home is never easy. But when the care needs exceed the available care at home or in assisted living, or if Medicaid is needed to help cover the cost of care, then the nursing home is going to be the only option. However, not all nursing homes are equipped to handle residents who wander, and you may have special concerns over someone who is prone to falling. These will be important considerations as you select the nursing home.
Planning tip: For both assisted living and nursing home care, a care plan is developed when the resident arrives. Because of the special care needs for Alzheimer’s and Parkinson’s, be sure that the diagnosis is properly noted in the plan of care, and that there are activities appropriate for the resident’s abilities. This care plan should be reviewed regularly, and updated when the resident’s condition changes as the disease progresses.
Getting Help Paying for Care
While outside the scope of this chapter, there are various ways to pay for the costs of care at home or in a care community. This can include private pay, long term care insurance, and Medicaid. Medicare does not help to pay for the cost of custodial care, but it can help pay for a brief time for rehabilitation in a skilled nursing home following a hospital stay.
Each state’s rules will vary, but generally Medicaid planning can help protect the person who has Alzheimer’s or Parkinson’s and his or her family. Be sure to consider available veteran’s benefits, including “aid and attendance” programs for a wartime veteran and the surviving spouse of a deceased wartime veteran.
It is critical to plan ahead to preserve family savings, preferably at least five years before paid care is needed if possible. Otherwise, once a person spends down to the point where Medicaid covers the cost of care, he or she must have next to no countable assets (often $2,000 or less) and then only gets to keep about $30 per month (not even a dollar per day!) from his or her Social Security check and pension. Proper planning often can set aside funds that allow the family to pay for extras not available when trying to live on the pittance allowed by Medicaid.
There are often special Medicaid rules that help to protect the spouse who remains at home, sometimes called the “community spouse.”
Planning tip from Dennis Toman, Certified Elder Law Attorney: Be sure to start planning when you get the diagnosis of Alzheimer’s or Parkinson’s. Don’t wait until the disease has taken its terrible toll. In my elder law practice, I see too many families who waited too long, and they wish they hadn’t delays. Don’t let that happen to you! Those who delay lose valuable years of planning time, and the disease may even rob them from being able to sign critical documents and take important planning steps to protect themselves and your family. And, never get your Medicaid planning advice from the Medicaid office. They are under no obligation to tell you all of the available options to best protect yourself, your house, and your life savings. Instead, talk with an experienced elder law attorney who is familiar with the public benefits in your state.
Hospice care is a limited exception where Medicare can help pay for care at home. Hospice is designed for dying patients and requires that a doctor give an opinion that the patient will live only another six months or less. At that point the care changes from an attempt to cure the illness to comfort care. Because of the difficulties of determining when a person who has Alzheimer’s or Parkinson’s has reached the last stage of the disease, there are specific Medicare and National Hospice Organization guidelines for hospice care for non-cancer diseases including dementia and Parkinson’s.
Planning tip: If you are providing care at home for a loved one, start exploring the possibility of hospice early. Talk with the doctor about this, and if the doctor balks or hesitates, consider talking with another doctor. Starting hospice doesn’t mean you’ve given up. In fact, getting the additional help at home may be sufficient to overcome immediate health concerns, and the patient may even improve sufficiently to withdraw from hospice.