F A Q’s
1. My mother needs long term care. What options are available, and how do I research these facilities?
It is important to first establish exactly what type of care your mother needs. If she does not require 24 hour care perhaps she could remain in a more independent setting with support services. Assisted Living, elderly housing, congregate housing or even remaining in her own home with enhanced services may be a viable option.
Discussing your mother’s needs with a physician, nurse or social worker would be a good start. Once the level of care needed is established, The Elder Care Locator or 1-800-677-1116 can assist you in finding out what elder services are available to you in your community. A case manager from the local elder services can complete an assessment and help with the next step.
If it is determined that your mother requires skilled 24 hour nursing home care, researching nursing homes through the Nursing Home Compare database on Medicare’s website can be helpful. On this site basic statistics are listed about nursing homes in a designated area as well as any recent inspection violations.
Visiting different facilities and observing and speaking with staff and residents can be informative. Take notice of activities available, cleanliness of the facility and observe how the staff interacts with the residents. It is also important to research if the nursing home accepts your insurance (Medicare or Medicaid Certified) and also if they have a bed available.
2. How do I ensure that my loved one is receiving all the health benefits they are entitled to?
Navigating the health care system can be confusing. There are three organizations that may be able to help you.
– SHINE (Serving the Health Information Needs of Elders) – This program consists of volunteers who will sit down with a senior and/or family member and provide information and answer questions regarding Medicare, Masshealth, prescription programs as well as other health care programs. They also will assist the consumer in filling out necessary applications. SHINE volunteers can be contacted through your local Regional Elder Care Agency (SSES), or your local Council on Aging.
– National Council on Aging has a website to help you determine eligibility regarding hundreds of state and federal programs. It is confidential, fast and free.
– Medicare Rights Center provides state specific information about Medicare and other health care coverage. You can also call the National Helpline at 800-333-4114.
3. I’m overwhelmed with all the care I give to my parents but I would like for them to remain in their own home as long as possible. What type of home care services could my parents receive and how do I pursue this?
Home care services are a great way to enable elders to remain living in their own homes for as long as safely possible. Caregivers can contact the local Aging Service Access Point (ASAP) to make a homecare referral. Subsequently, you will hear from a case manager who will schedule an in-house assessment in order to determine what types of services are appropriate and to determine if the elder is eligible for subsidized home care services. This initial assessment is free of charge. If it is determined that your parents are over-income, the case manager can provide you a list of home care agencies that provide home care services privately.
Keep in mind that an ASAP also has a home delivered meals program that may be appropriate for your parents. This program is not income based and is free of charge with only the request of a donation. To find the ASAP in your area call: 1-800-AGE-INFO (1-800-243-4636).
4. I’m currently providing constant care to my medically involved mother and never have time for myself. I’m extremely stressed. How can I get respite care when my mother is over-income for homecare services?
The Family Caregiver Support Program (FCSP) through the local Aging Service Access Point (ASAP) program is not income-based and may be able to assist you. This program consists of Caregiver Specialists who will meet with you as a caregiver and complete a caregiver assessment.
Meeting with a Caregiver Specialist, however, can also be a great resource for the caregiver. The Caregiver Specialist can assist with information regarding caregiver support groups, assist with decision making, provide emotional support as well as assist the caregiver with a wide range of information and resources . The FCSP does outreach and often has seminars in local communities to assist caregivers. Call 1-800-AGE-INFO (1-800-243-4636) for ASAP in your area.
You can also refer to our “Resources” Section for an online version of our annually printed Resource Guide. If you would like a hard copy, please call our Information, Outreach & Referral Dept. at 781-848-3910.
5. My father’s Alzheimer’s disease is progressing to the point that his confusion and behavior is overwhelming for me. Any suggestions?
Alzheimer’s disease (AD) is a progressive neurological irreversible form of dementia that affects about 2.5 million American adults, so you are certainly not alone. Caring for and coping with someone with AD can mean a lot of work but it can be manageable.
It is first important that the caregiver learns about the disease. Understanding what is happening and anticipating what will be happening next can make a big difference in coping and reducing the stress.
The Alzheimer’s Association can provide a lot of support, such as providing information habilitation, coaching, seminars as well as directing you to local Alzheimer’s support groups in your area. They also can provide suggested reading. For the Alzheimer’s Association in your area call 800-272-3900.
Each caregiver needs to seek out support for themselves. Caregiver burnout can be a real issue because neglecting yourself can put your own health at risk. Reaching out to neighbors, family and friends for assistance, even for the smallest of tasks, can greatly reduce stress.
Exploring homecare services through the local Aging Service Access Point (ASAP) at 1-800 AGE-INFO or 1-800-243-4636, may also be an option in order to spread out the caregiving tasks (i.e. someone to assist with bathing). MassOptions is another valuable resource for information. There are also Adult Day Programs for elders; some specialize in working with elders diagnosed with dementia or AD. This program would provide stimulation, activity, socialization for the elder as well as provide respite for you as a caregiver.
6. I am one of five children; however, the brunt of my parent’s caregiving is put on me. How can I get my siblings more involved and if they continue to refuse, how do I get beyond the resentment?
It is not uncommon for the primary responsibility be designated to a particular adult child. There could be various reasons for this, some of which may be due to this person’s proximity to the elder, the pattern of roles within the family or may be due to the designated caregiver not being married or having kids. Regardless, there are many ways you can reach out to family for more support.
Family Meeting – Arranging a family meeting with all family members present to discuss a plan can be beneficial. Decide ahead of time, what you hope to accomplish. For the meeting to be successful, ground rules should be developed and all participants should agree that the meeting will remain elder-focused; avoid past disputes and old grudges. All members need to talk calmly and be willing to compromise and listen to other points of views. In order to keep the meeting positive and avoid members feeling attacked or defensive, members should use “I” statements when making their point. For example, stating, “I’m feeling overwhelmed in trying to keep up with mom’s care” is more effective than stating, “I’m tired of you not helping out.” Spreading out tasks that are appropriate to each member’s strengths should be considered. For example, the brother who is an accountant would be appropriate to assist with finances. For a relative living long-distance, assisting with online banking could be a big reliever. In the end, however, if members refuse to cooperate, you need to accept the reality and accept that even though it’s not fair, it’s time move on and perhaps look further into formal supports (homecare, church, Council on Aging). Attending Caregiver support groups can give you an opportunity to talk through your frustrations and perhaps gain insight from others going through similar circumstances. Remaining positive, keeping yourself healthy and having other diversions can reduce stress. Also appreciating yourself, finding meaning in your role and enjoying the time left you have with your parent can also be rewarding.
7. My wife and I are in our 70s and are caregivers to each other. We have never put together a will, health care proxy or any other long term care arrangements. We have limited funds. How do we pursue this?
Designating someone as a healthcare proxy is a simple procedure. It only entails filling out a basic form and having it signed with a witness present. The forms can be obtained from a physician’s office or from your local elder care office.
Regarding other legal issues, such as wills, trusts and other legal planning, it would be prudent to have an elder care attorney prepare the documents for you. Ask your family lawyer for a referral to an elder law attorney.
Lawyer Referral Service of Mass Bar Association in Boston provides referrals for those that are low income to attorneys whom have agreed to not charge more than $75/hour. The Mass Bar Association (MBA) also sponsors a Dial-A-lawyer program.
The National Academy of Elder Law Attorneys’ website can guide you and answer questions regarding legal issues.
8. Between work and caring for my parents, I have limited time to meet with social workers or research caregiving issues. What reputable websites do you recommend?
Also, check out our RESOURCES section. If you would like a hard copy of our annually printed Resource Guide, which includes a section of helpful website listings, please contact our Information, Outreach and Referral Dept. at 781-848-3910.
9. I am worried about my father who lives alone and is refusing assistance from me as well as any support services. I’m concerned about his hygiene, nutrition and personal safety. What should I do?
Understanding the source of the resistance and the risk involved is important to consider.
If your father’s refusal for assistance is not typical for him and you’re noticing a change with his behavior and personality, you may want to have him see a physician to see if there is something medically going on.
However, many times resistance is due to an elder’s pride and longstanding self-sufficiency. He may not be comfortable asking for assistance and also may fear being a burden. A new approach may offer assistance without compromising his pride. It is important not to fall into a role-reversal in which you are behaving as his parent. Ensure that your father maintains control in his life. Offer different options to your father and stress how such options are a way for him to remain independent (i.e. adaptive equipment, home delivered meals, homecare services).
It’s also important to assess what the actual risk involved is, and if he understands the risk. Is his lack of hygiene causing skin breakdown or irritation? Are nutrition concerns related to your dad losing a lot of weight or gaining a lot of weight? If the situation is not ideal but is causing him no risk, you may need to just respect his wishes, and to let him know that you are there should he need you. Freedom of choice and self-determination is a right we all share; as competent adults we have the right to make our own decisions, even if they are poor ones. However, an exception would be if you believe that your father is confused to the point in which he does not understand the risk and perhaps does not have the capacity to make certain decisions for himself. If this is the case for you, a neurological and/or competency evaluation may be necessary.
As a last option, if your father refuses to see a physician and there are safety concerns, you may want to notify Adult Protective Services at 781-848-3910 during normal business hours (9:00AM – 5:00PM). For after hours, weekends and holidays, call 1-800-922-2275 to make a report of self-neglect.
10. My Uncle is now retired and only receiving Social Security. He can no longer afford living in his current private apartment. What housing options are available to him?
There are different types of housing options. There are Housing Authority subsidized housing, Private subsidized housing and Congregate housing (congregate is shared living in which the elder has his own bedroom but shares the main living quarters). Usually with subsidized housing, an elder pays no more than 30% of current income. Although Assisted Living Programs are predominantly private pay, there are some that have subsidized slots. In Massachusetts there is a program named Group Adult Foster Care; it is funded through Medicaid and ElderCHOICE . This program will fund an assisted living subsidized slot. However, slots are very limited and restrictions apply.
Be aware that there tends to be long waiting lists to get into subsidized housing (especially housing authority), therefore, getting on lists as quickly as possible is advised.
If your Uncle is struggling financially, he may also be eligible for other benefits such as Mass Health, fuel assistance and food stamps.
11. It is no longer safe for my parents to drive due to their illnesses and I cannot always assist. What transportation options are available for them within the community?
There is a wide range of transportation options for seniors. Your local Council on Aging (COA) may provide transportation for your parents. Transportation availability varies with different communities. Some towns have numerous vans to assist; others only have one or two. As a rule, COA’s will provide transportation to most local destinations but give priority to elders that need transportation for medical appointments.
In Massachusetts, the MBTA has a Para-transit system that will provide transportation to those who are unable to use public transportation due to a disability. An application, as well as an assessment completed by a physician, will need to be submitted. Applications are available at your local ASAP (Aging Service Access Point). For an ASAP in your area call: 1-800-AGE-INFO or 1-800-243-4636. Your local ASAP can also inform you of any additional transportation available in your area. For Braintree, Cohasset, Hingham, Holbrook, Hull, Milton, Norwell, Quincy, Randolph, Scituate, and Weymouth, call our Information, Outreach and Referral Department (IOR) at 781-848-3910.
12. I feel very isolated as a caregiver. Are there any support groups or programs available for caregivers in order to share advice and experiences?
There are a wide range of support groups available for caregivers. Most ASAPs (Aging Service Access Point) have a Family Caregiver Support Program which consists of Caregiver Specialists who will meet with caregivers, complete an assessment and provide information, resources and support to those in need. A caregiver specialist can also provide you a list of support groups in the area. Some support groups are specific, such as an Alzheimer’s support group or bereavement/loss support group. There are also support groups titled for overall caregiving support. The local Council on Aging in your town often has support groups. To locate the ASAP in your area dial 1-800-AGE-INFO or 1-800-243-4636.