Care-partner Burnout and support services

When care-partners have a hard enough time assisting with home txs and support is needed for the heavier day to day tasks that aging home patients require ( vacuuming, sweeping and mopping floors, dusting, mowing the grass, preparing meals or running errands etc.), does Hospice or any other service kick in? Someone told me about a lady who said she was running back and forth to care for both of her aged parents who were having trouble with day to day tasks. She said that in both cases they could be ok one day and unwell the next. In her case, Hospice stepped in and provided wonderful volunteer support. She said most people don’t know it, but one’s parent does not have to be at death’s door for Hospice volunteers to lend support- they will come in when the family needs it when caring for an aged parent becomes too much. She said regarding death, aged parents can be up and running one day, but then have bad days in between- it is not always possible to know when that time will come, but the fact is, support is needed at that time of life or adult children burn out. Instead of being able to be close and savor this chapter in their relationship with their parents, adult children are frantically trying to cope from day to day. My concept of Hospice has been that they strictly only lend support when a person is at the very end. I have thought that only the family, neighbors or the church lend support to the aged whether on dialysis or otherwise. Are there agencies that I am unaware of which provide volunteer support services to those with chronic illnesses, the handicapped and/or the aged?

Hospice services must be physician ordered and theoretically the person is supposed to be within 6 months of death, although it can be renewed if still needed after 6 months. Medicare covers visits by hospice nurses, social workers, chaplains, etc. Medicare also covers a home health aide if someone needs skilled services, i.e., a nurse, physical therapist, occupational therapist or speech therapist.

If people have limited income, Medicaid may provide some in-home services. People can get home-delivered meals from Meals on Wheels. Sometimes people pay out of pocket for home care services (not medical) based on what they need that are provided by a variety of companies. The Department of Aging in state or local community or the United Way ( has a database to help people find the services they need. Here’s a link to a Caregiver website that may provide other tips. (scroll down the page to the map and check out the Family Caregiver Navigator database)

The Federal government has a website to help people find resources to take care of elders. You can find the closest office that knows about senior resources if you put in a location or you can find information on several specific topics.

The dialysis social worker should know or be able to find out resources to help patients and their families when help is needed. Unfortunately the social worker does not have a magic wand. Help may not always be free.

So far as dialysis is concerned, if a patient’s care partner needs a break, the dialysis clinic should be able to provide back up dialysis either in that clinic or help place the patient in clinic closer to their home if the partner is ill or otherwise unavailable.

TY Beth, I will check into these resources. Being an experienced SW, other than Meals on Wheels, do you know of any specific support services Medicaid or these other agencies have provided?

Here’s a webpage on the Medicare website that I hadn’t seen before. You might want to look under “Care Options” for information about what Medicare covers, who qualifies for it and when.

The Medicaid waiver program called Home & Community Based Services (HCBS) is available in most states. Its goal is to keep keep people in their own homes. You might check with your states to see what services are available as they may vary from state to state. There is information about this program under “independent living” along with other resources on this government website:

There’s a relatively new program called “Money Follows the Person” (MFP) that has the goal of moving people from institutions back into the community. You can read about this program on the Kaiser Family Foundation website:

Beth, I will be checking into each resource you sent, and I know support services vary from state to state, but the reason I have asked you about specific examples of patients you know who were assisted through volunteer agencies is because in all the years I have been studying dialysis on the net, I have not read of one single account of a patient who was assisted with the heavier household chores. Maybe I have just forgotten, but I don’t recall a thing along these lines. I have heard of agencies/renal associations who help with utility bills, free meds, paid care-partners ( in a few states), Meals on Wheels ( only those who can not drive themselves to the food store qualify I read once, irregardless if one has enough $ for food, a dependable vehicle, gas $ to get there, or the physical health to prepare daily meals). I will be calling Meals on Wheels for myself to see if this is their policy or not. There is free transportation to and from dialysis clinics for those who qualify, but not many patients I know like that arrangement unless they are completely desperate of family or friends to chauffeur them. And like you said, there is home health nursing for those who qualify. But what I am specifically looking for is whether or not you have ever had, or heard of, a patient who received volunteer services for the heavier home chores through any agency other than the family, friends or the church?

I’d check with the United Way to see if they know of any agency that provides volunteers to do the types of home chores that you’re looking for. In my area people can apply for help for things like painting, roofing, etc. I can’t remember the name of the agency in Kansas City, but I bet if you called the United Way in your area, they may know. One of my friends volunteered to do these kinds of things. There is an organization called VolunteerMatch that links people wanting to volunteer with people needing volunteers - The dialysis social worker is the first person I’d recommend that a dialysis patient approach to ask about an unmet need. When the social worker doesn’t know of a source of help, check the area United Way ( Until a specific need is identified it’s hard to be able to suggest all the resources that may fill that need or even investigate if there are resources.

I’ve had many patients who received a variety of services over the years I worked in dialysis and I’ve shared resources in their local communities with people that call the Life Options Resource Center too. Some got help from family, friends, and churches, but many got help from national, state, or local government, community organizations or charities. The patients that generally got the most help were those that had limited income and assets and few other supports because most agencies and organizations expect people to use what they have before they ask others for help. I had patients who saved for the rainy day and were reluctant to spend what they had when the rainy day arrived. However, government agencies and charitable organizations have too limited funding to help everyone.

The types of things my patients received in addition to the services you seemed most interested in that I already shared (i.e., homemaker services to clean the house, prepare meals, do shopping, pay bills, etc.) include the following things…I’m sure I’m not remembering all the help my patients received from a variety of sources.

  • People with Medicare and limited income can get help from the state to pay all or part of their Medicare Part B premiums, deductibles and coinsurance through federal Medicare Savings Programs (income up to 150% of the federal poverty level). State Medicaid offices can screen people for these programs which allow people to have higher income than Medicaid allows. Studies have shown that all those eligible have not applied for this help.

  • Those who don’t have transportation, can’t drive, and don’t have someone to take them to medical appointments can get transportation provided by their community. These are shared ride. Providers have a “window” to pick up people so the patient get dropped off early or have to wait a while to get a ride home. Most would prefer not to have to wait and not to have to ride when others are dropped off, but waiting and taking longer to get home is the trade-off for not paying full fare cab.

  • Area Agencies on Aging or similar agencies offer Meals on Wheels for a donation and those who are elderly or disabled people can apply for these services. The food may not be what the person would have chosen to eat, but again, that’s the trade off when you don’t want to or can’t cook and you can’t get out to buy a meal. Some of these programs also provide the option to people to have a “congregate meal” where transportation picks people up and takes them to a local community center to eat with others, play cards or games for a while and then the transportation that brought them takes them home. I believe most provide a menu for the month so people know what they’re going to get. I’ve heard patients say that they could eat two meals off what they were provided for lunch. This is typically a 5 day/week service.

  • County or cities’ community development departments have built wheelchair ramps or done home repairs for those with limited incomes.

  • Some local charities provided fans or air conditions for people who didn’t have these.

  • The Health Department or Aging Services have investigated reports of bed bugs and assured that landlords are doing what it takes to rid an apartment of them.

  • The Dept of Health & Human Services provides money to states to help those with limited income pay their utility bills -

  • Many National Kidney Foundation offices provide a limited amount of financial help so someone can pay a utility bill or do car repairs or pay for gas, etc. These offices depend on donations or bequests to be able to provide this kind of help.- The American Kidney Fund pays insurance premiums for patients with money donated by providers. It helps pay for certan drugs with donations from pharmaceutical companies. It provides some financial assistance through individual patient grants that can be reapplied for as often as every 6 months. It provides facilities small grants for patient emergency needs and requires receipts to get the emergency fund replenished when money runs out.

  • Community social service agencies provide food vouchers or commodities (canned goods, meat, cheese, etc.) to those without and holiday baskets, clothing, etc. those who need them. Some of the food is not good for a renal diet.

  • Those with limited income can geet housing help through Housing and Urban Development (HUD). Local communities may have other sources of housing assistance too. Because of the need there are often waiting lists for this help. However, emergencies like fires and homelessness or near homelessness usually get priority.

  • There are dental schools that provide low cost dental care and a program of the National Foundation of Dentistry for the Handicapped called the Dental Lifeline Network (new name) provides free dental services for people who are elderly and disabled -

Everyone needs to realize that there may not be resources to fill unmet needs. The recession has hit government and organizations hard. So far as federal, state, or local goverment help, be a knowledgeable voter. Read about the candidates views on what are being bandied about as “entitlement programs” that others consider “safety net” programs. Entitlement programs include Medicare, Medicaid, low income energy assistance, housing assistance, legal aid, etc. They have become buzz words for programs take hard earned cash from people who are doing well to help people who should help themselves. Is this socialist ideology or a reflection of the popular Christian saying today, “What would Jesus do.” I hope that patients and their family members and friends will consider donating to charitable organizations that help people with kidney disease and others who have real needs for social services.

Wow Beth, think you covered it all. Lot’s to look into, ty… The reality is, many, if not most on dialysis, even those on home txs, can not earn a living, are short on funds for housing, food and transportation as well as the other necessities of life. They require help with the heavier household duties, depend on family for assistance with their txs and family does get burned out as it is not easy to care for a loved one in the sense of being tied to a person for life. Family care-partners give up the freedom to be spontaneous, they must be home to assist with txs every day, are limited to when they can go shopping or out for the evening or on a vacation. They are tied to the tx just as the patient is. Most family members run the other way, but some are devoted to their loved one. They are truly self-sacrificing and deserve all the help they can get with doing the constant txs, giving up their time, energy and resources to stand by their loved one with kidney failure. They are truly their brother’s keeper. I hope I can find some volunteer services through your suggestions that can make the load lighter for my family and for others.