TIME TO TAKE ACTION
had seen the signs of my mother's declining memory and ability to think logically for a few years. I took over paying her bills and got helpers who would do her grocery shopping. The realization that things were coming
to a crisis happened when I received a phone call from the police in the town where my mother lived. The officer told me my mother had been calling the station several times a week to report thefts in her home. She was reporting the theft of knives, forks, toothbrushes, scissors, and other small household items that would not interest any thief.
The problem was that she was misplacing things, and, when she could not find them, the only logical explanation to her was that someone was stealing them. I found most of the lost items (and they often were in odd places), but could not convince her that the items were not being stolen. To avoid potential thefts, she started hiding her favorite things. Unfortunately, this only exacerbated the problem as she could not recall where she hid these items or even that she did, in fact, hide them. The final straw that made me realize that life could not continue as before was when she thought I was someone else.
She began talking about me, with me, but was referring to me in the third person.
Tip: When talking to other children of people with dementia, I found that they alSo encountered situations where their parents explained misplaced household items by theft. So, be on the lookout for these symptoms, especially if the “stolen” items are everyday household items of little value. If these situations occur over and over again, it is time to take action.
DIFFICULT CONVERSATION S
often heard that people with dementia do not know they have it. My mother could not put a name to her problem, but she knew that something was wrong. When I told her that I was worried about her living on her
own, she agreed. Mom said she wanted me to find her a place where she could get help with daily chores like meal preparation and cleaning. I thought she also needed reminders so that she would take her medications on time.
I immediately started looking for assisted living places. I have prepared a list of questions I asked every place I visited so I could compare different facilities. As I learned more about the assisted living and nursing homes, I continued to add new questions to the list. By the time I started writing this book, the list of questions has grown to eighty. Even if you don’t ask all eighty questions during your search, I hope the topics will give you eighty things to think about as you make your decisions.
A DURABLE POWER OF ATTORNEY
durable power of attorney is an essential document for every caregiver. This document allows you to make decisions on behalf of your parents. If you have a power of attorney, you can pay bills on behalf of your
parents and direct their medical care. Note that the word “durable” is critical because the non-durable power of attorney automatically ends when the person becomes incapacitated.
Even though the ability to make medical decisions is usually included in the general power of attorney, it is best to also have an explicit medical power of attorney paperwork, the health care proxy. This document designates a person as the primary decision maker if a person is facing life and death circumstances. In this document, your parent chooses a person who will make choices about treatment options, insurance benefits, and life support. It is best to create these documents when your parent is well and does not need help making decisions. Life is unpredictable, and it is smart to have legal paperwork in place before it is required.
My mother saw a lawyer and created both documents 20 years ago. She gave me the original documents for safekeeping. When I needed to use the paperwork, many institutions required me to show them the original and only then accepted a copy for their records. She did everything right, and only now, I realized how fortunate I am that she thought of it. The fact that the documents were 20 years old was not an issue.
IN-PERSON VISITS ARE A MUST
visited half a dozen assisted living facilities within a 15-minute drive from my house. I did not like any of them. Some of them looked very decrepit. In other facilities, residents looked like zombies. In yet other places, the
sales pitch was so intense that the environment did not feel right. I found one facility that I really liked, but it had a waiting list, so I had to strike it off my list.
One of the key questions on my list was what would happen when my mother ran out of funds. She had enough savings to cover about two years in an assisted living facility. Some places did not accept residents who could not prove they could pay for many years of residency. Some facilities provided a few beds for people with limited funds. These beds are paid for by private or state money (i.e., nonmedicaid funds). The number of such rooms is limited, and they have a waiting list. The facilities with subsidized rooms could not guarantee a spot for a specific period of time. For example, they could not promise that my mother would have a room available to her in two years.
Some facilities took part in“adult foster care,” a program aimed at lowincome residents. I was not familiar with adult foster care programs. I learned that they are similar to assisted living where care is provided for an individual in a facility with shared living and dining areas. However, there are some important differences. They offer only non-medical assistance (that is., they do not have skilled nursing staff) and there is not 24-hour access to awake staff. In foster care, there is 24-hour access to staff, but they are asleep at night. In assisted living, there is 24-hour access to awake and onduty staff.
The cost of adult foster care is approximately half of the cost of nursing home care, and in most cases, it is also a less expensive option than assisted living. Neither Medicare nor Medicare Supplemental insurance cover assisted living or foster care. However, if you receive Medicaid and need help with at least one activity of daily living, Group Adult Foster Care (GAFC) may cover the cost of personal care services if you live in a GAFCcertified facility.
However, GAFC pays only for personal care expenses, and does not cover room and board. Note that not all facilities accept GAFC, so you need to ask explicitly if this option is available.
Because my mother had some savings, it made the situation more complicated. I had to make plans for two scenarios, what to do while she could pay for her room and board and what would happen when the money ran out.
The places I visited during my first round of visits did not offer a clear explanation of what would happen after she ran out of money. The facility representatives told me that they could not guarantee that she could stay in the same facility when her funds were exhausted. This statement meant that I would have to start the search for a new facility again when she spent all her savings. It also meant I would need to put my mother through another move two years down the road. A change of surroundings is traumatic for a person with dementia, as they often find it difficult to remember the new surroundings and new people.
A PLACE FOR MOM
heard ads for a service called "A Place for Mom," and at the start of my search, I looked at their website and did not like it. The site did not provide any specific information online, you had to register and call them
on the phone. I was afraid of getting endless solicitation calls from the service, and so I started the search on my own without using their service. After not finding a facility that I liked, out of desperation, I phoned“A Place for Mom.” I described the situation to them, including the fact that she would run out of money in two years. They recommended two places for me. I visited both and really liked one of them. After the initial contact with the service, I only had one more phone call from “A Place for Mom.” They wanted to know if either of the places they recommended was a match. I told them I would follow up with one home they recommended. I said I would contact them if I needed more help. They never tried to sell me anything else.
About a year later, I mentioned to the director of the assisted living home that I found their facility through“A Place for Mom.” I confessed to him I was pleasantly surprised that they were helpful, free, and did not continue to bother me with marketing phone calls. He said that even though the service was free to me, the assisted living facility pays “A Place for Mom” to refer people to them. I thought it would be useful to note that “A Place for Mom” is not an unbiased independent service. They are working for the assisted living facilities that contract with them, and those are the facilities they recommend to people who contact them. I found“A Place for Mom” very helpful, and I used their recommendation, but they did not disclose their financial connection to the places they recommended.
THE PLACE FOR MY MOM
he facility I liked was a small family-owned facility with 40 residents in assisted living and about 100 residents in the nursing home. The assisted living facility and the nursing home were in adjacent buildings
connected via locked doors. During my visit, they showed me both facilities. The residents in both assisted living and the nursing home looked alert, and I even talked to a couple of them. Most of the rooms in the assisted living facility were single-person studio apartments. Most of the rooms in the nursing home were double occupancy.
The price for a double occupancy rooms in the assisted living (that is., a room with a roommate) was approximately $1,000 cheaper per month. The savings on a double occupancy room did not seem to be large enough to warrant this option. I felt that a single occupancy room would be a smoother transition from independent living to an assisted living home.
One of my concerns, based on visits to other facilities, was that the staff would force my mother to participate in games and other social activities. She has never been a social person, and I knew that if they tried to force her to become one, it would be difficult for her. Unlike the other places, the staff told me they would not try to force my mother into social activities if she did not want to take part in them.
Unlike other assisted living facilities, this place gave me a reasonable answer about what would happen when my mother’s money ran out.
The explanation I received from the assisted living director (next chapter details his explanation) let me feel that there was a path forward. I liked the facility, I liked the people I spoke with, and I thought I had a general outline of what will happen when the money runs out.
The only negative for this facility was that it was further away from my house than I wanted, but I liked everything else about it. So I had to compromise on the driving distance.
MEDICAID NUTS AND BOLTS
he assisted living director explained that Medicaid does not cover assisted living, but Medicaid does cover nursing homes.
To qualify for Medicaid, a person must qualify both medically and financially. To qualify medically, the person either needs nursing facility skilled level of care, or have a medical or mental condition that requires a small amount of skilled nursing help but substantial assistance with daily living activities. A skilled level of care means needing injections, wound care, catheter care, or other medical needs. Assistance with daily activities includes help with bathing, dressing, toileting, eating, or mobility.. This assistance must be needed at least three times a week.
Note that a dementia diagnosis on its own does not qualify a person for a nursing home. However, many dementia patients do qualify, as they need help with daily activities. Once the Medicaid office receives an application, they send a nurse to evaluate the individual’s level of ability to carry out everyday tasks.
To qualify financially for Medicaid coverage, an individual must have no more than $2,000 in resources ($3,000 for a married couple). Resources include all assets including savings and property with two exceptions. In Massachusetts, one car of any value is exempt, as long as a household member is using it. The home is exempt up to an equity value of $878,000 (in 2019) if one of the spouses lives in the house or if the resident plans to return to it. Note that the rules in different states might be different. All the specifics in this book are based on my personal experience in the Commonwealth of Massachusetts.
The next step was for the nurse to visit my mother and evaluate her condition. The director explained that they needed to know if she could live in an assisted living facility or required a nursing home. The nurse
determined that my mother currently could function with the level of help that assisted living provides. At the end of the evaluation, she warned me that dementia is a progressive condition, and with time, my mother would need more and more assistance. I asked the nurse to give me her projection of my mother’s condition in two years. She could only speak in generalities based on the initial assessment and her experience with other patients. She said that my mother’s current tests were marginal. Given the progressive nature of dementia, my mother would likely do worse on the tests in two years. This means that as time passed, she would likely fail the tests and probably medically qualify for the nursing home. She told me they would evaluate her health every six months and communicate with me about her status.
Everything felt right, and I expressed interest in having my mother move into their facility.
Looking back, the nurse ’s assessment of the progressive nature of my mother’s disease was pretty accurate. For example, my mother’s ability to take the medications with only light prompting has evaporated. Early on, she would take medication at prescribed times after the attendants reminded her. Towards the end of her stay in the assisted living, my mother began refusing to take her medication. Even though this negatively affected her health, the assisted living staff was not allowed to take action to help. The staff in the assisted living facility can only remind residents about medicine; they are not qualified to try to convince them to take it. Once she moved to the nursing home, the nurses were able to do some extra coaxing, and she began taking her medications again on a more regular basis.
SIGNING THE PAPERS
After the nurse finished my mother's assessment, the assisted living facility asked me to come back to select the room and sign the paperwork. They let me pick an apartment out of three options. I chose
a studio on the second floor with a beautiful view of trees and a Koi fish pond in the little park below the window.
The stack of paperwork I had to sign was more massive than I had to sign during a house purchase. Among the paperwork, there was an agreement that I was a guarantor of my mother’s payments for the assisted living facility room and board. I was hesitant about signing this obligation as the cost hovered around $5,000 per month. On the other hand, I really liked this facility, and I was afraid they would reject her application if I did not sign it. So I signed it.
The payment schedule for the room and board worked like a typical apartment rental. My first payment covered the first and last month’s costs, and I had to make a monthly payment by the 5th of each month. I agreed that I would notify the assisted living facility when my mother had three months of payments left in her savings account. The director of the facility did not explain why he needed a three-month notice. You will see later that the three months was a critical time frame as it gave me more options.
DID I MAKE A BIG MISTAKE?
When I got home, I did an internet search on being a guarantor for payments and found statute 42 CFR 483.12(d)(2) of Federal Regulations on Public Health. I included a direct link to this law in Appendix at the end of this book. This statute was in the Admission Policy section. This statute says it is illegal to ask a family member to sign the paperwork as a guarantor.
Here is the exact quote from this document that starts at the bottom of page 50:
(2) The facility must not require a third party guarantee of payment to the facility as a condition of admission or expedited admission, or continued stay in the facility. However, the facility may require an individual who has legal access to a resident’s income or resources available to pay for facility care to sign a contract, without incurring personal financial liability, to provide facility payment from the resident’s income or resources.
I panicked that I had made a huge mistake and made an appointment to see an elder law attorney. If I could have had a doover, I would have seen the lawyer first. The lawyer explained to me that the statute I found refers to nursing homes, but not assisted living facilities. Even though he would have recommended that I did not sign such paperwork, it was not illegal for the assisted living facility to ask me to sign this agreement.
For the next two years, I worried about what would happen after my mother ran out of money. I was afraid that the facility would tell me that my mother did not qualify for the nursing home even if she did. I feared that they would have a financial interest in keeping her as a resident instead of transferring her to a nursing home. Thankfully, my worries turned out to be groundless; the assisted living facility was accommodating throughout the process. Perhaps one of the reasons was that both the assisted living facility and the nursing home were part of the same company and the parent company was so they would not lose residents during the transfer from the assisted living to the nursing home.
Tip: If you think you might need to transfer your loved one from an assisted living facility to a nursing home, keep in mind the financial interests of the companies involved as well as yours. If possible, try not to sign guarantor paperwork. Also, keep in mind that elder law attorneys specialize in answering these and similar questions.
LIFE IN AN ASSISTED LIVING FACILITY
My mother adjusted to her assisted living facility quickly. She liked her apartment. She enjoyed that she could stay in her studio as much as she wanted. Occasionally, she joined community activities but not often. Her primary interaction with other residents was during meal times. Sometimes, she ended up at a table with people she did not like, and the care coordinators moved her to a different table to be with people she liked better.
Most of all, I appreciated that they kept in touch with me via email, which was my preferred method of communication. I work in an environment that provides no privacy, so I was glad I did not have to use the phone to discuss these personal matters. I would use email to pass my mother’s requests to them. Other times they would give me updates on her health, mood, or behavior. For example, when she refused to take showers or take medication, we would discuss options on how to handle the situation. They were always caring and responsive. It took a lot of worry out of my life, as I no longer worried about how she was doing while I was at work or why she did not answer the phone.
The next year and nine months went by quickly. I noticed my mother ’s dementia became more severe. Sometimes she thought I was her sister rather than her daughter. It was shocking the first time it happened. I did not know if I should try to change her mind or just go with the flow.
The assisted living staff helped me understand that people with dementia often picture themselves as their younger selves. So if my mother thought of herself as a middle-aged woman, how could another middle-aged woman be her daughter? I had to be her sister. It was only logical. The good news was that my mother forgot that she and her sister did not get along. She was happy to see me both when she thought I was her sister, and when she knew I was her daughter. The director of the assisted living told me that this is quite common. He said that his personal experience was very similar to mine. His father thought he was his brother, with whom he did not get along all his life. When his father thought he, his son, was the brother, he treated “the brother” very affectionately.
THREE MONTHS WARNING
ADMISSION TO THE NURSING HOME
Tip: Get a receipt for the installment. You should submit it with your Medicaid application.