How in the World Will I Pay for Long-term Caregiving?

Financial planning is an important factor in long-term caregiving.

Having a long-term caregiving plan is a must for family caregivers, especially if their loved one has Alzheimer’s disease or other chronic health conditions. In 2018, the Alzheimer’s Association estimated that the total lifetime cost of care for someone with dementia was  $341,840.

When we placed my husband in a memory care home in 2008, it cost roughly $6,000 a month, which covered a private room and extras like a weekly massage. Everything is more expensive today. The Alzheimer’s Association lists the following median costs for long-term care services in 2021. From what I’ve seen, the costs are typically higher on the East and West Coasts and lower in rural towns, and in the Midwest, the South, and western states.

  • Home care: A paid non-medical home health aide is $24 per hour and $960 per week (40 hours of care).
  • Adult day services: $74 per day.
  • Assisted living facilities: $4,300 per month or $51,600.
  • Private room in a nursing home: $290 per day or $105,850 per year.
  • Semi-private room in a nursing home: $225 per day or $93,075 per year. https://www.genworth.com/aging-and-you/finances/cost-of-care.html

What’s the difference between assisted living and a nursing home?

By the time a person with dementia is ready for a care facility, they need lots of assistance so it’s best to consider a home that offers memory care in a locked-down environment. Locked-down isn’t as bad as it sounds. It just means that the residents can’t leave the facility and wander off and get lost. The exterior doors are locked, but residents are usually free to roam the halls and go in and out of their rooms and living areas.

An assisted living home offers some care such as transportation to doctor appointments and help taking medications. And some offer designated living areas for people with dementia. But generally, residents in assisted living facilities are in fairly good health and are able to take care of their personal needs.

A nursing home provides medical care 24 hours a day. Meals are prepared by the staff, residents usually eat in a dining room, or in their own room, and care is provided ranging from help getting dressed and bathing, to rehabilitation from a fall or bone breakage.

People with dementia and Alzheimer’s disease are usually placed in memory care homes that cater to their particular needs. Memory care homes aren’t exactly nursing homes because not everyone with dementia has another physical illness. But the cost is comparable to that of a nursing home because of the amount of hands-on care that is needed, which includes bathing, brushing teeth and getting dressed, toileting, etc.

Consider respite care

Respite care provides short-term relief for primary caregivers. It can be a life savior when you’re at your wit’s end and “just can’t take it anymore.” There’s no need to feel guilty. All caregivers need a break in order to recharge, destress, and take care of their own needs—which is crucial to staying healthy.

Respite care can be provided at home, in a healthcare facility, or at an adult day center. It can be arranged for a few hours or for several days or weeks. For more information about respite care: https://www.nia.nih.gov/health/what-respite-care, https://archrespite.org/respitelocator

Financial help

As soon as you or a loved one is diagnosed with Alzheimer’s, or other dementia or chronic disease, make an appointment to see an elder attorney. They will inform you of your options and help with long-term planning.

For instance, in Colorado, in 2020, one month in a nursing home costs nearly $9,000. That’s more than $100,000 over the course of a year. Many elderly individuals spend down their life savings on nursing home costs so they can eventually qualify for financial assistance

If both spouses are living, and one of them is healthy, the healthy spouse can be left with little money on which to survive. An elder law attorney can help families avoid this unfortunate, but common, scenario.

The Community Spouse Resource Allowance is useful when there is concern the couple has too many assets to receive financial assistance from Medicaid to pay for long-term care. This particular allowance lets the healthy spouse keep a portion of the joint assets, up to $128,640 in 2020.

Another allowance, the Minimum Monthly Maintenance Needs Allowance, or MMMNA, lets a healthy spouse retain part of their ill spouse’s monthly income. ps://www.robinsonandhenry.com/colorado/estate-planning/medicaid-planning/?utm_term=&utm_campaign=&utm_source=adwords&utm_medium=ppc&hsa_tgt=&hsa_grp=&hsa_src=x&hsa_net=adwords&hsa_mt=&hsa_ver=3&hsa_ad=&hsa_acc=4376139444&hsa_kw=&hsa_cam=14487629423&gclid=Cj0KCQiAhMOMBhDhARIsAPVml-HXnbFv18MpGCumQd7lKb5xGoJ36cvPNwcdGqRFpgnWq63lYsSAYAkaAnCaEALw_wcB

If you plan to hire an elder attorney, please check reviews and ask for referrals for a competent elder attorney. Unfortunately, the elder attorney I hired made a mess of things for me and my family, and I had to hire an additional attorney to straighten things out.

Other options

• Call 800.827. 1000 or visit http://www.va.gov. In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

• Contact your local family and senior services office. They can provide you with information about help in the home, long-term care options, legal support, Medicare and Medicaid, public assistance benefits, services, and programs, guidance, and tips on accessing services, caregiver support training, and more.

• Contact your local Alzheimer’s Association for information about services and support groups. They offer classes for caregiving on everything ranging from financial planning to how to get your loved one to take a shower. https://www.alz.org/

Taking time for yourself

Caregivers get burned out if they don’t take some time off to recharge. And in the worst-case scenarios, caregivers end up being sick and having to be taken care of. If you don’t take care of yourself, who will take care of the person you were lovingly taking care of?

Here are links to a couple of articles I posted on this blog about ways that caregivers can achieve more peace and less stress. https://archrespite.org/respitelocator, https://barbracohn.com/2020/06/23/20-natural-remedies-for-depressed-caregivers-and-everyone-else/

Have a safe, satisfying, and stress-free (as much as possible) Thanksgiving. And please take a little respite time for yourself, even if that entails just walking around the block for 30 minutes.


Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The 20 most important things to consider when looking for a memory care home

seniorenheim 6The day I moved my husband into a memory care home was the second worst day of my life. The worst day was the day he was diagnosed with Alzheimer’s. And both of those days were worse than the day he died.

After the diagnosis, I didn’t waste any time getting our finances sorted out, talking to an elder attorney about options, and learning about Medicare benefits. I did, however, wait a year before I contacted that Alzheimer’s Association. That was a mistake because this amazing association offers so much good information and support. So do yourself a favor and contact your local chapter and take advantage of all the free classes and support groups they offer.

After several years of caring for my husband at home, and downsizing to a more manageable home, I was advised to start looking for a memory care home in case an emergency situation arose.  I wanted to keep my husband at home as long as possible. But things happen, and in my case, I received a serious diagnosis. My doctor said that I needed to take care of myself and I listened to him. I got recommendations about a few homes in my town, found one I liked, and put my husband on the waiting list.

Many facilities will allow you to get on a waiting list. When your name gets to the top, you might have the option to refuse because you are not ready. In this case, you can move down the list but still have priority over someone who is recently added. Ask about this option.

The home where my husband lived for two years provided good care, but did not live up to the promise of caring for him until the end of his life. In fact, the last month of his life included several moves. After being discharged from the hospital, Morris was sent to a rehab center in a nursing home. It was not a good situation. The food was horrible, and the care was sorely inadequate. After two weeks, I begged the original home to take him back. They agreed to only if I hired additional one-on-one care. I did, but the cost was prohibitive. I moved him again after finding a wonderful end-stage Alzheimer’s unit down the hall from a hospice center. Morris received excellent compassionate care there the last two weeks of his life.

Here’s list of 20 things to look for and ask in your search for a memory care home:

  1. Look at your state’s Public Health and Environment website to see a facility’s number of beds, complaints, medical director, ombudsman’s phone number, and whether the home is Medicare and/or Medicaid certified. Here you can discover things like mishandling of narcotics (oxycodone), and theft of residents’ belongings, etc.
  2. What is the staff to patient ratio? During the day? At night?
  3. Is there a RN (registered nurse) always on the premises? Is a doctor always on call?
  4. How often does a medical doctor visit the facility?
  5. What level of care does the home provide? Can your loved one stay there until the end of his/her life? What if your loved one becomes non-ambulatory?
  6. Are three meals a day provided? What about special diets such as kosher, vegetarian, low-salt?
  7. What type of training has the staff received?
  8. What is the staff turn-over rate?
  9. What is the monthly rate for housing and care? What services does that rate include?
  10. Are rooms private or semi-private? How do prices vary for each?
  11. Is housekeeping and laundry provided? How often?
  12. What programs are offered? Social, educational, outings, exercise?
  13. How secure is the unit? Are residents locked in? Is there any chance a resident can leave and wander? Has this ever happened?
  14. What happens if the resident becomes aggressive or violent? Is he or she drugged? Given a warning that he or she must move out?
  15. What is the chain of communication for letting family members know what is going on with a loved one?
  16. What is the discharge policy?
  17. Are pets allowed?
  18. Are visiting hours limited or open?
  19. What is the protocol for a medical emergency?
  20. Visit the facility and look around. Are the staff appropriately dressed? Are they warm and friendly? Is the environment pleasing and clean? Does the executive director address residents by their name? Would you be comfortable having your loved one live there, and would you be comfortable spending many hours there?

No one ever wants to live in a nursing home or assisted living facility. But when your loved one needs more care than you can provide, is a danger to him or herself, or you, the caregiver, need to take care of yourself, a memory care home can provide a warm and loving option. Good luck finding one that suits your needs and the needs of your loved one.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

12 ways to make sure your loved one is safe in a nursing home

 

Nurse serving food in nursing homeIt’s horrific and tragic that eight residents of a nursing home in Hollywood, Florida died this week as a result of dehydration, respiratory distress, and heat-related issues.  The nursing home administrator Jorge Carballo said “The Center and its medical and administrative staff diligently prepared for the impact of Hurricane Irma. We took part in emergency management preparedness calls with local and state emergency officials, other nursing homes and health regulators. In compliance with state regulations, the Center did have a generator on standby in the event it would be needed to power life safety systems. The Center also had seven days of food, water, ice and other supplies, including gas for the generator.”

But clearly something was wrong, very wrong. One man who learned about his mother’s death from a report said communication with the staff had always been difficult, so it did not strike him as unusual that his calls were not returned. Lack of communication is a big red flag.

My husband spent a little over two years in an assisted care facility, and my mother lived in a continuum care facility for seven years. Here is what I learned from my experience as the primary family caregiver responsible for making decisions about their care.

  1. If you anticipate that your loved one will be going into a nursing home or assisted living facility in the near future prepare months in advance. Visit a number of facilities in the area where s/he will live. Once you shorten the list to two or three, drop in unannounced so you can observe how the patients are treated. Supposedly, the best time to “drop in” is Saturday evening when there are fewer staff members around and visitors are not expected. Your senior services ombudsman will know which facilities have had complaints filed against them and can give you an idea of which ones to look at based on your family’s needs.
  2. Notice if residents are crying out for help, are in distress or appear dehydrated, and if their needs are attended to quickly. Be aware of odors (especially ammonia or urine) and whether the halls, dining areas, and residents’ rooms are clean.
  3. Once your loved one makes the transition into a home, get to know the staff—as intimately as your time allows. By making a personal connection with the people who care for your loved one, you will become more than a familiar face.  Professional caregivers make little income, have a huge responsibility, and are often the people who know best about the patient’s needs and status. These are people with families of their own. Ask about their child’s sports team or dance class. Ask about their grandchild’s birthday, etc. Your personal interest in their life will be appreciated and they will naturally develop an interest in your loved one and your family.
  4. A friend of mine visits his wife in a nursing home every single day, bringing her fresh berries or cut-up melon because the home doesn’t provide fresh fruit. It’s not practical for everyone to visit a loved one every day, but when you do, bring something nutritious such as fresh fruit instead of sweets. Fresh fruit is usually easy to eat and provides vitamins and antioxidants that help prevent colds and flues.
  5. Make sure water is provided throughout the day–not just that it is available but that it is offered. Seniors often lose the signal that they are thirsty and dehydration can be a serious problem for the frail and elderly.
  6. If your loved one is incontinent, make sure there are plenty of adult diapers in the room and that s/he is being changed regularly. Urinary tract infections are a serious problem with this population and staying dry and clean is a key to preventing them!
  7. Be on the alert for bruises or sores. A bed sore can lead to a systemic infection and death. Speak to the attending doctor or nurse immediately if you notice a sore that is not healing. A bruise can indicate that your loved one has fallen or, in the unlikely but not unheard event, that s/he has been abused.
  8. Sit with your loved one while s/he eats in the dining room. Is she able to feed herself or does she sit there not knowing what to do with her sandwich? If it is a problem, make arrangements with one of the staff to help her.
  9. Does your loved one require oxygen? Nursing homes are required to have generators in case of power outages such as during a hurricane. Familiarize yourself with the provider of the oxygen that your loved one receives and make sure the company is equipped to provide liquid oxygen for use when there is no power.
  10. Remove all loose rugs and obstacles in the room that your loved one might trip on. Also, place a lamp in easy reach of the bed so s/he doesn’t fall while trying to turn it off or on.
  11. My husband lost numerous pairs of glasses when he was in the assisted living home. Leave at least one extra pair with the floor nurse, and keep an extra pair at home.
  12. Know who to talk to if you have a question or concern. Over the years, I had to speak with the director of the facility where my mother lived several times. Don’t be shy and don’t be afraid of making a nuisance of yourself. Your family might be paying big bucks for the care you expect. If something is not agreeable to your loved one or your family speak up. Most of the time the director will be appreciative to hear your concerns and the matter will be quickly remedied. If not, contact the regulatory agency in your state to file a complaint. On this page you’ll find contact information for each state and territory. We provide information (where available) so that you can: 1) file a complaint about a nursing home; and 2) find additional nursing home information provided by a state.

Is it Is it Time to Move Your Loved One to a Memory Care Home?

The day we moved my husband to a memory care home was the worst day of my life. Worse even than hearing the doctor say to him, “You have Alzheimer’s disease.” Worse than the day my father died, and worse, yes, than the day my husband died.

Why? Because that decision is fraught with guilt, all kinds of guilt. Guilt that I didn’t do enough for him, guilt that I was a failure in keeping the promise I made to him that I would take care of him ‘til the end, guilt that I would be able to enjoy some free time and have fun (what did that mean?), and guilt that I would go on to live my life without the man I promised to share it with.

But there comes a time when enough is enough. And if the health of the caregiver is impacted by the strenuous task of caring for someone who can no longer bathe, eat, drink or walk without assistance, it’s definitely time to consider moving that person to a facility that is better equipped to care for him/her.

Signs that it’s time to think about the big move

  •  You have a physical challenge that is getting progressively worse
  • Your loved one is a wanderer and has already gotten lost outside
  • You aren’t strong enough to meet all the physical needs of your loved one
  • You are depressed, cry often and can’t think clearly
  • You are unable to manage daily tasks because of your care giving demands
  • Your friends and family have expressed concern about your well being and the well being of your loved one
  • Your loved one has challenging behaviors and you feel unsafe when he or she “acts out”
  • You’ve tried other ways to keep your loved one at home but they haven’t worked out or are inadequate
  • It’s more financially doable to pay the cost for a residential facility than to pay for full-time care in your home

In the end, I listened to a friend who advised me to not wait until we were faced with a crisis. I found a wonderful facility where the staff grew to love my husband, and he felt like a valued member of the community. It was the right decision for us, and I’m glad we got on a waiting list a year before I made the hardest decision of my life.