Your Long-Term Care Options
What Types of Care are Available?
Many find themselves saying "Mom or Dad can no longer live alone. What can I do? What should I do?" Whilst the answers involve complex emotional, monetary, physical, and spiritual considerations, practically speaking, there are really only three basic choices:1. provide assistance in the senior's home allowing the person to stay there
2. move the person into your home
3. move the person into some type of residence where assistance is provided, for example, a Residential Care Facility (RCF), or a Skilled Nursing Facility (SNF).
How Can I Make a Choice?
Many times the need to make a choice is precipitated by some dramatic event such as a fall in the home, the death of a spouse, or a medical crisis. This means that this very difficult decision is required in the midst of the emotional and physical turmoil associated with the precipitating event.The choice is an intensely personal matter and any one of the three choices will have an impact on you. When such a choice needs to be made, it will likely challenge your basic values and you may find some of your most cherished personal beliefs in conflict.
A list of questions is given below. The hope is that as you answer these you will become more clear about how the needs and wants of your elder and you can be best served.
We also offer you some thoughts about how to go about answering the questions. Try to be realistic and honest in addressing the questions. Separate the answer that you feel you SHOULD give from the answer that is the truth for you. Realism and honesty will help provide choices that will withstand your own subsequent emotional scrutiny.
Answering the questions will require some research on your part, hence some resources are suggested at the end of the page.
Considering Staying at Home
Staying at home is usually the first choice of a senior. It is known and familiar. Moving out is in some ways an admission of not being as able as one once was. Seniors are adept at appearing to be more able than they actually are. Many seniors assume that any other choice will be horrible. You unfortunately have the obligation to be realistic. If it's Mom or Dad, you may feel the emotional obligation to follow their wishes. In addition, a large part of your life has been spent receiving guidance and advice from them. It is a significant change to be in the role of making decisions for themWhat level of care is required?
Is non-medical assistance such as shopping, cooking, paying bills and the like?
Is help required to ensure that medications are not forgotten?
Is help required with activities of daily living?
How many hours a day is the care required?
How much will it cost and will paying these costs reduce or eliminate other choices later on?
Is reliable help available?
Are you able to check that the help is not abusing the person?
Hired caregivers are subject to human failings. Seniors may be physically or emotionally abused and be afraid to say anything. They are not only concerned about retaliation, but also worry that if something is said, then maybe no one will care for them.
Theft is another concern. Was the money stolen or did Dad just get confused about how much was in his wallet? The author is personally aware of one case where a caregiver set up and ran a drug operation from the home of a 90 year old senior person. The senior was paying top dollar for this highly recommended live-in caregiver.
Is the home safe for the person or can it be modified to be safe?
Are railings available the full length of staircases?
Are supports available in the shower or tub?
Are there gas appliances that must be lit?
Is there a way to summon help if the person falls and can't get up?
How often will you personally want to visit?
If your elder will move, how far away is it?
What other obligations demand your time? For example, would you be taking time away from your children to spend hours traveling each week-end to visit?
What are the demands on your time due to work and other family obligations?
Considering Moving Elder into Your Home
Can the person be left alone and for how long?What changes will need to be made to your home to make it safe for a senior?
Who lives at home and how will they be impacted? e.g. Are there children living at home? How old are they?
What will you do if the person becomes ill or simply needs to go to the doctor?
Are you and your spouse in COMPLETE agreement?
Are you also in agreement on sharing the responsibilities?
When a senior person who is no longer capable of being fully independent moves into your home, part of the caregiver role is that of policeman. You are setting and enforcing the rules. If the senior doesn't want to take medicine, you enforce the requirement. If the senior can't walk around the neighborhood alone without getting lost, you enforce the requirement. If the senior cannot safely navigate stairs alone - well, you get the idea. So instead of gratitude for all your efforts, you may get attitude.
Regarding caregiving in your home:
Your Mom may have done this for grandma or grandpa. This is turn may cause you to feel that this is expected of you., but things have changed. In your Mom's day, many women stayed at home. This provided the opportunity for social interaction with peers during the day. Today, there are so many two income families that staying at home can cause you to feel socially isolated.
More on caregiving in your home: If you decide to do this, recognize that you will need help. Learn about what is available and plan on utilizing it. Learn about caregiving and learn about caring for the caregiver. Few parents would want their children to completely give up their lives for them. Many people have found in-home caregiving to have its own emotional and spiritual rewards. It can be a positive experience. It can also be a very negative experience. And remember that such decisions do not need to be permanent.
How do you feel about having part-time help come into your home?
Have you investigated the options for senior day-care?
Have you investigated what options are available if you want to go away for a weekend?
Recognize that it will be easy for you to go overboard placing extra burden on yourself and unnecessarily reducing the independence of your senior. Some seniors will fight this; others will willingly cooperate. It is a difficult balance to determine.
There are little day-to-day considerations that you might not think of e.g. Seniors are often cold. If you keep the house at 68 degrees in the winter, expect comments about it being too cold? If you have your favorite TV shows, you may hear about how silly they are. And, of course, parents often feel obligated to provide advice.
In many cases, an elderly parent ends up in the home of an offspring simply because to lack of funds to support any other option. It is important to realize that this can cause you to feel resentment. Then in turn you may feel guilty for feeling resentful. These feelings create stress and you will not need any extra stress. Be aware of what is happening to you emotionally and find sources of help.
Be aware and honest with yourself. Taking care of a senior in your home who is no longer able to live alone is a tremendous responsibility. Consider also your own age and health in making these decisions.
Moving Elder into a Care Facility - Some Considerations
Are the financial resources available for this option?How far away is it from you? Should you relocate the senior, geographically, so that you can more easily visit?
Be prepared for enormous initial resistance. Change is scary at any age. Also, many seniors have a picture of care facilities as hell holes, or the place one goes to die, or the place where one gets dumped when the family doesn't want them anymore. Talk about a guilt trip!
Have you thoroughly researched what's available?
Have you thought about the possible need to move among facilities with differing levels of care? For example, one might need to move from assisted living to a nursing home.
If funds are available, but limited, have you learned how the facilities address Medicaid?
Will the facility accept a client coming in on Medicaid or will the facility demand an initial paid period? Facilities are becoming increasing inventive about ways to finance the cost of care. Care costs money. Include this fact in your planning. Ask, don't assume.
Don't assume that government funded facilities will be horrible. Visit them and decide for yourself.
Some advantages of care facilities are:
Someone else is the "policeman".
Increased social interaction.
In addition to the residents themselves, there are planned activities, staff, and visitors.
More supervision of care than occurs with a hired in-home caregiver.
Facilities are purpose built to accommodate the elderly and are inherently safer than the home.
Independence of the senior is encouraged.
Emotional considerations
What did Mom or Dad tell you before they became less able.?
Would they want you to make great changes in your life?
Seniors can become more self-focused and less self-less as their health or clarity of thought deteriorates.
Would the Mom you knew really want little Clara to miss her soccer game so you could visit her on a Saturday morning?
"No one will care for her as well as I do."
When we say this, we typically visualize the time when we are there and fully engaged in care. Now place that vision over consecutive 24 hour periods. There are times when you must sleep, when you must leave, and when you need a break. You can care better with help.Does the senior want to stay at home?
Guilt is a powerful but non-productive emotion.
If you have made informed decisions based on honest assessments which include the impacts on the entire family, then you have done the best that anyone can ask of you. Recognize that there may not be a perfect solution. The available solutions typically represent some level of compromise. If the compromise involves a parent, you will feel guilty. If the compromise involves a spouse, you will feel guilty. If the compromise involves your children, you will feel guilty. If your answer to guilt is to try to do everything yourself, you will fail. Guilt should not be the basis for your decisions.
You must take care of yourself in order to take care of someone else on a sustained basis.
Some caregivers just cannot bring themselves to take care of themselves until they have pushed to a limit where they become ill. Then it is OK to not take care of Mom of Dad because it is impossible. Unfortunately, then there are two people requiring care instead of one. How has that helped? Beware of such emotional traps.Does the senior want to stay at home?
Resources
Explore the "Get More Help & Information" link on the menus provided on this web page.Books
There are many books on the subject of aging, caregiving, dementing illnesses, and the like. The local bookstore or library can provide a wealth of information. Here are two titles we found noteworthy. There are many others:
"How to Care for Aging Parents: A Complete Guide" by Virginia Morris published by Workman Publishing, NY, 1996.
"The 36-Hour Day : A Guide to Caring for Persons With Alzheimer's Disease, Related Dementing Illnesses and Memory Loss in Later Life" by Nancy L. MacE, et al; published by Mass Market Paperback, 1992
This book deals with caregiving for a person with Alzheimer's disease. It provides information at both a medical level and a personal level.
Support Groups
Some people find sharing their experiences and knowledge very useful. Support groups provide a forum for doing this. Your local agency on the aging should be able to provide information on support groups on your area.
Financial Assets - One important note
If both partners in a marraige are still alive, and one needs nursing home care, an attorney specializing in elder law and Medicaid issues can often do wonders in preserving assets for the healthier spouse. It is generally NOT necessary to put the healthy spouse in poverty in order to pay for care for the ill spouse. However, tricky legal issues can be involved. The helpful person at your local agency for the aging is likely not a lawyer and almost surely not a legal specialist in this area. The house, the car, the IRA, the savings- don't lose them unnecessarily. Don't wait until the assets are gone to see a lawyer specializing in this area. Remember, Medicare generally does NOT pay for extended nursing home care.
