Book Review: Making An Exit by Elinor Fuchs

Making an Exit by Elinor Fuchs is a book that documents a mother-daughter drama through Alzheimer’s discovery, caregiving woes, and adventures in language. Elinor, while not as close to her mom while she was growing up, draws near to her in the later part of her life. When her mom first experiences a heart attack at 63, and then is found to have breast cancer at age 65, then has a mastectomy and lumpectomies at age 67, Elinor becomes more cognizant of her mother’s mortality. The mastectomy seems to set the stage for how she and her mother’s relationship will progress. “My career as ‘Mother’ – her name for me later when she struggled to place our relationship – may have been prefigured here, the day mother was sent home from the hospital.” A few years later during a trip to Edgartown for Labor Day, Elinor makes the discovery – her mother has Alzheimer’s. It dawns on Elinor when Lil, at age 74, cannot recognize a seagull and asks, “What’s that, a cat?”

The realization of Lil’s dementia and subsequent confirmation of her diagnosis by a gerontologist begins Elinor’s new protection of her mother. She extends their trip together then goes to stay with her mother in Lil’s apartment “watching her like a hawk.” Elinor discovers that her mother can no longer drive (she gets lost), can no longer cook “the fridge is full of takeout containers” and she can’t do laundry. “She used to wash out her stockings every night, but now she just drops them on the bathroom floor.”

Elinor decides to leave her mother in her apartment in Washington DC because there, “she has a devoted brother, a niece, a former business to which she is attached as the landlord of its office space.” Her reasoning is that if she moves her mom in with her in New York, “she’ll lose that support and the familiar surroundings of half a century.”

Elinor immediately decides to hire some household help and a companion “who will come part of every day to organize her life at home and take her shopping or for a walk. I’ll call this person her ‘secretary’– yes a good idea, make a bridge back to her old familiar life.” Elinor is clearly aware of person-centered care as she tries to give her mother some dignity and comfort by using phrases and titles that her mother used in her working life for over 35 years as a business owner. Elinor specifically focuses on hiring someone who is intelligent, interested in current affairs, and will be a good companion for her mother. She specifically says “I want no nurses in white uniforms”; she wants someone who will be fun. Considering her mother traveled the world for her international business, collected art pieces and beautiful clothes, she appreciates her mother’s interest in having a good time.

When the home-care companion agency cannot help Elinor with the type of services she wants to provide her mother like driving her around, shopping for clothes, taking her to the movies, and to the Women’s Democratic Club (something her mother specifically asked to join), she looks elsewhere. Elinor begins looking for people in her own industry the theater for ladies in-between acting jobs. She gets one “secretary” for 10 weeks, then another for a year, and finally breaks down and hires a home caregiver who ends up spending more of Lil’s money than appropriate. As Elinor describes it, “the decline is precipitous, and I am running, running to catch up. We go from fifteen hours to thirty, from five days to seven, from half-days to whole days, and then to nights.” Because Lil’s space does not allow a live-in caregiver, Elinor starts hiring “single professional women and willing grad students” to rotate sleeping on the sofa in the den with ads in community weeklies: ‘Earn Money While You Sleep, Seeking Companion Care for Lively Retired Professional Woman.” 

Somehow even as unmanageable as the caregiver/secretary situation seems, Elinor makes it work to allow Lil to stay in her own apartment for 9 years. She visits her monthly, managing all her mother’s affairs. “I am the link to her internist, her cardiologist, her oncologist, her gynecologist, her dermatologist, her lawyer, her bank, her accountant, her insurance agent, her landlord, the IRS, the Social Security Administration, Blue Cross, Medicare, the Wadhwanis [people who bought her mother’s business], and the helpers. I have left out her piano tuner, her dry cleaners, her hairdresser. The entries in my address book for Mother run to a dozen pages.” Elinor really grows into her role as a caregiving daughter, managing her mom’s care from a distance most of the time and managing it hands-on when she’s in town. “I learn to change my mother’s diaper: a fresh horror that practice will mitigate.”

Eventually the caregiver situation breaks down, if only temporarily, when one of the main caregivers must return to her home country for her father’s illness. This opens the door for Elinor to try assisted living for her mom, something she had decided against early on. Two weeks into her mother’s stay at the assisted living home, she takes Lil back to her old apartment for a visit. She asks her if she knows where she is. She says, “Well, yes, public-address. We are very near…somewhere…” Elinor tries another way, asking if she knows whose things are in the apartment. “Well, yes I do,” Lil answers, “I’ve known these things all my life.” When Elinor prompts her as to whom the items belong, Lil says they belong to her. But when Elinor asks if she wants to live there again, Lil nearly shouts “HELL, NO!”

This part of Elinor and Lil’s story was truly fascinating. It certainly highlighted the ideas of persons with Alzheimer’s experiencing selfhood. It also clearly expresses how well persons with AD can compare their present self to their former self. It also seems to address the guilt one might feel when moving a parent from their home to a facility. If the home is tied to a former successful life, it could be a source of frustration. As in the case of Dr. M in the book, “The Person with Alzheimer’s Disease” by Johns Hopkins, Lil reveals both an intact Self 1 and Self 2. She is aware of the differences in her personal abilities and lifestyle with dementia and is able to compare them with how successful, independent and well spoken she was. She is also able to express anger for the differences between who she is now versus who she was in the past. Elinor realizes this during the apartment visit. She says, “I see that putting down this cumbersome baggage of a life she cannot live would be a huge relief to Mother, a liberation.” To confirm her belief, Elinor asks her mother why she doesn’t want to come back to the apartment she lived in for over 30 years. With clarity, Lil answers, “Why go back in life when you can go forward?”

Lil thrives in the new assisted living home until her care needs become too unmanageable for the hired nurses. When a space in a Special Care Unit for dementia opens up, Elinor moves Lil there. The Special Care Unit is working with new practices in ethical caregiving. They “do not sedate the patients, and try to reduce if not eliminate prescription drugs...They do not restrain patients during the day or tie them to their beds at night.”
Lil loves the new facility. As Elinor describes her first day upon arrival, “Lil is in summer camp and out to make the most of it.” For Lil’s 84th birthday, Elinor, Lil’s brother and Ruth, one of their favorite caregivers, celebrate with Lil. They look through old photos of Lil, finding new pieces of the puzzle on Lil’s former life and former old flames. Elinor teases Lil saying, “Oh Mother. You sly dog you! You trickster!” Elinor then tells her uncle, “The woman led a double life.” At this point, Lil changes the subject and addresses the three of them. She “proceeds to offer a peroration and exhortation from the dais, as it were, reviving perhaps the skills she displayed on the Glenville High Debate Team sixty-seven years ago.” This was a wonderful display on preventing excess disability. By Elinor, Lil’s brother and trusted caregiver all treating her as a person and not a disease, she felt encouraged and strong enough to attempt a speech. Although throughout the book Lil’s part in the conversations are often difficult to follow, her birthday speech is quite special. The best part about her speech is that it’s all very optimistic. Some of the highlights were, “And being smart, and being a happy, that you can say to them – if you want to – that ‘Isn’t it wonderful?'...In a very hopeful way. And I’m awfully happy….We can do it! We can do it!...I’m happy with it!...By gosh I, all I can say is… Let’s try!”

In sharing this speech, Elinor really portrays Alzheimer’s in a very positive way. Though Elinor shares the good and the bad throughout her journey with Lil, she keeps it extremely lighthearted. She also makes interesting realizations of Alzheimer’s that are encouraging. She shares when Lil once kept rediscovering a gift she’d received on Christmas morning, every couple of minutes, asking what it was. When her granddaughter confirmed it was her Christmas present she’d just given to her, Lil would exclaim, “You did? How wonderful!” then repeat it all again a few minutes later. The granddaughter laughed that, “It’s wonderful to give a gift that keeps coming back… You get so much for your money.” Later the granddaughter said to Elinor how much nicer Lil is with Alzheimer’s than she was before. She says, “Mom, Alzheimer’s is good for Grandma.” Elinor also describes the fresh, clean start that Alzheimer’s often provides. “With Alzheimer’s, the clock is reset all day long. We never linger in the past, nothing is as out of date as the past five minutes.”

Elinor also describes the happiness of romance and Alzheimer’s with Lil’s new love interest in the Special Care Unit. “Mother wears the satisfied grin of the Cheshire Cat about this ‘catch.’” Lil later finds a new love interest, one who is married, but his wife, Mrs. Blue, supports the coupling. “My husband has taken quite a shine to her. I’m so happy he’s found her. Anything that makes him happy,” Mrs. Blue says. Elinor also describes how her mother got up and danced when a band once came to play for the residents. One of the staff members said, “Your mom – I couldn’t believe it! She just got up there and danced. She reminded me of Isadora Duncan.”

This book was truly a joy to read. Ms. Fuchs used a wonderful balance of reality and comedy. She never dwelled on the negative. Some of the conversations her mom and she had were absolutely comical. Once when she roused her mom to get up and go to bed, Lil said “Are we going to jop the gizzers?” and Elinor said, “Sure, we’re going to jop the gizzers right now!” Ms. Fuchs also portrays her mother as happy and this is an important thing to share while people are so very fearful of getting Alzheimer’s. We need to see people like Lil, who are happy, always dancing around, pursuing new love interests and wanting to meet new people. I believe that my grandmother found more happiness in dementia than she had before it. She always held back her opinions and thoughts, but with dementia, she was finally able to be candid and say exactly what came to mind. While I won’t say her comments always made my mother happy, they definitely gave us a laugh and made my grandmother happy.

What I liked most about Elinor’s accounts of her journey with Lil’s dementia was how it felt very real, without feeling downtrodden. In a wonderfully refreshing way, Ms. Fuchs made caregiving from a distance seem very doable.  I would definitely recommend this to anyone who wants to know more about Alzheimer’s and I would love to see more books written in this style.

Have you learned something about Alzheimer's you wish more people knew about? Have you read any dementia care books you'd like to recommend? Please share!

Long-Term Care

Financing long-term care was a nightmare for our family. My grandparents initially “qualified” for Veterans benefits, as my grandfather fought in World War II. Initially, my grandfather and grandmother were receiving the maximum benefit of $2,019 per month (for veteran and spouse). Thus, the Veterans Administration was paying roughly 30% of my grandfather’s assisted living home monthly cost until about a year and a half into his care, when they determined he actually didn’t qualify for benefits. At this point, the VA began to demand the $40,000 back that they’d paid out. My mother had to get an attorney and try to fight the VA to get everything corrected.

The Veterans Administration “does not reveal maximum allowable assets” and according to a New York times article, $80,000 (“the house and a car are exempt from this total”). Yet, what the VA told my mother, was that because my grandparents owned a house it disqualified my grandfather from getting long-term care assistance from the VA. (At the time my grandfather entered the assisted living home, he had a caregiver who filled out his paperwork to help him and my grandmother enter assisted living. It is likely she left out what assets he had to make assisted living appear cheaper for him.) Interestingly, it is illegal for someone to help a veteran fill out the 26-page application. According to the September 2012 New York Times article, "A Little-Known Benefit for Aging Veterans," “The department forbids anyone to charge to help veterans fill out these challenging forms.”

In the end, the VA offered my mother a “bargain” if she repaid half of what they paid ($20,000 within 60 days) they would never ask for the final $20,000 they had paid out. My mother took their “bargain” to avoid paying it all back, but within a couple weeks of paying it, the VA demanded the full amount. Her attorney had to help her prove, several times, that she was given a special deal and had met the requirements to qualify for their “deal”. Their demands for the full $40,000 dragged on for sometime, and caused my mother a great deal of stress, but eventually the deal of paying back only 50% of what they paid out, $20,000 stood.

After the VA fiasco, my mother was paying about $8,000/month for both my grandparents to reside in a very nice assisted living facility with an integrated memory care unit (for my grandmother who had dementia). My mother spent all of the money my grandparents had in savings, cashed out her own retirements, and the stress created a variety of health problems for her. She eventually left her job to deal with all the complications, taking an early retirement. A recent segment on NPR, which interviewed Elder Law attorney, Marielle Hazen, highlighted these types of sacrifices. As Ms. Hazen described it, “I see a lot of family members making a lot of sacrifice: leaving the workforce, losing their retirement benefits, losing health care benefits in order to make sure their parents are provided the best care.”

During the time my grandparents were in the cohabitation (dementia care with other residents) assisted living home, my mother kept shopping around for assisted living homes that wouldn’t charge so much. The cost savings created other complications however. Some homes were in bad neighborhoods. Others had the memory care residents locked up in a separate facility, away from their non-dementia spouses. Eventually my mother met with an Elder Care attorney, and learned how to qualify my grandparents for Medi-Cal, and got them into a Medi-Cal Long-Term Care Provider (a skilled nursing facility). This new facility cost about 60% less than the assisted living home they had been in. However, this “solution” was short lived. My grandmother died within 5 days of the move, and my grandfather died less than two months later.

The skilled nursing facility was filthy, noisy, and horrible. The staff moved my grandmother’s bed out of the room that she and my grandfather shared right in front of my grandfather in less than 24-hours after her death. He was nearly in tears as he said to me, “Where are they taking that? I bought that bed for your grandmother.” The staff kept coming in and interrupting my visit with him, their walkie-talkies echoed down the corridors, and because my grandmother was dead and they needed the room, they wouldn’t leave us alone until they could move my grandfather to his new room with a roommate. It was a horrible scene, and when he said to me “I don’t plan to stay here long,” I didn’t blame him one bit.

I did not agree with my mother in moving my grandparents to the skilled nursing facility, though I can hardly say I blame her given the financial situation and costs of keeping them in assisted living. It was not my money to spend, and therefore it was not my choice to make. Yet, considering the short time they lived after the move, it would not have cost much more had they remained in assisted living.

In some ways I do believe that the move killed them. I believe the strain that my grandmother experienced with having dementia and being relocated after nearly 3 years in the same place, to an entirely new place led to her stroke. Her death in turn, killed my grandfather’s will to live after 50+ years of marriage. His decline after her death was swift and deliberate. He was ready to go.

Thus, financing long-term care is a definite strain on families. It can drain their bank accounts, savings, retirements, and tear them apart in time. There is also guilt involved when money becomes the issue. Fortunately for “Schnootzie,” the grandmother of the NPR article on long-term care, her grandchildren were caring for her with resources her son who preceded her in death left in his will to be used for her benefit. “But in most circumstances, people don't have that extra set of funding. And so it could be mom or dad or grandma or grandpa who is paying directly for the caregiver services” according to Ms. Hazen the Elder Care attorney.

Sometimes what families can afford for care is not the best place, or where they would wish their loved ones to be. I know in our family that was the case. The “affordable” skilled nursing facility my mother chose, was in my opinion, a place to die. It’s care and atmosphere would kill anyone’s will to live. When we arrived at the skilled nursing facility, they were removing a resident who had just died through the front doors. An hour later, as we were leaving we noticed an EMT sitting with the survivors of the decedent telling them about the death in public view right out in the lobby. To say the skilled nursing facility was inferior to the assisted living facility is a massive understatement. The assisted living facility had fun activities, kind caregivers, warm decor, privacy, and staff that treated the residents like family. I know where I would want to spend my last years of life, but where I will be able to afford to live is what will determine where I go.

I believe if we can carefully plan for our own futures, we can begin to care for our own successfully. We can purchase long-term care insurance to cover the costs of long-term care. According to Wikipedia, “Long-term care insurance generally covers home care, assisted living, adult daycare, respite care, hospice care, nursing home and Alzheimer's facilities.” Sadly, “Out of more than 313 million Americans, only about 8 million have any such protection, according to the American Association for Long-Term Care Insurance” says NPR in their May 2012 article “Long-Term Care Insurance: Who Needs It?” In the article, Geneva Hunter, a lady interviewed by NPR goes on to say how although her job offered that as an insurance option, she couldn’t afford the $400.00/month from her salary to pay it. When I consider the fact that my grandparents assisted living facility cost $4,000/month per person, the $400.00/month sounds like quite a bargain.

Another benefit of long-term care insurance, according to the May 2012 NPR article, “Waiting To Buy Long-Term-Care Insurance Adds Up” is that “all the money you save for retirement, you can actually use it for retirement, as opposed to having been forced to use that money on your care in a nursing home.” That unfortunately is exactly what happened to my grandparents. The younger a person is when they buy the policy, the cheaper the policy will cost them. However, in NPR’s interview with Kimberly Lankford, a personal finance writer for, Ms. Lankford says, “In your mid-50's, we say it's usually kind of a sweet spot. It is, you know, the rates are usually a bit more competitive then. And also, it's before a lot of people have started to develop medical conditions which then also make it more difficult to buy this coverage.”

Ms. Lankford also describes how the long-term care coverage generally gives a person a $150.00 daily care benefit ($4,500/month of coverage) for about 3-years. “A couple could pay about, $3,500 a year for both of them to get these basic benefits.” Although 3 years sounds like too short of a time to have coverage, it is exactly how long my grandparents were in long-term care. They moved into assisted living in June of 2009 and died in June and August of 2012. Had my grandparents purchased long-term care insurance earlier in their lives, their entire care needs during the last 3-years of life would have been covered. Their retirement savings would not have been drained. My mother’s retirement savings would not have been drained. Also, considering how my grandfather thought he had VA assistance, and ended up losing it, I don’t think we can count on the government to pay our way in long-term care. We can only rely on ourselves, and it seems that long-term care insurance is the best bet to cover such financial needs.

Have you been involved with long-term care funding for a loved one? Or do you have long-term care insurance for yourself? Why or why not?

Freedom in Dying

Last week, New Jersey cleared a Death with Dignity bill, Assembly Bill 3228, to reach their full assembly for a vote. Sadly, most of the nation still does not have Death with Dignity laws to protect patient choices. For example, in California where my grandfather died last year, there is no law protecting Death with Dignity. My grandfather had been ready to die and said as much. Following the death of my grandmother, he lost the will to live. He was unable to swallow foods or drinks anymore, and would have died had my mother not consented to a gastric feeding tube. He was losing consciousness, said goodbye to us, and he would have died in sedated delirium, but a feeding tube was inserted which re-nourished, and brought him back to suffer for an additional 2 weeks. My mother's belief system forced her to make the decision to keep him going, and he suffered until his death as a consequence. Some years ago my grandfather-in-law was determined enough to pull out his life-sustaining IVs, oxygen and feeding tubes in three separate incidents, only to have hospital staff reconnect him each time. His wishes were to die at home and not to be kept alive by machines.
The Oregon “Death with Dignity” law while progressive, could do more to protect patient choice for comfort in dying. First, the patient must be deemed “capable” of making the decision to use the Death with Dignity Act. Secondly, the physician may refer the patient for psychiatric or psychological counseling if the physician believes the patient has a psychological disorder or depression. When this occurs, “No medication to end a patient's life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment [1995 c.3 s.3.03; 1999 c.423 s.4]”. Additionally, there are also waiting periods between the patient’s initial oral request and the writing of the prescription. The patient must ask for the prescription orally, then submit a written request, and then reiterate an oral request to his/her attending physician at least 15 days after making the initial oral request. When one considers the fact that most patients want to live as long as they can, and enjoy what time they still have left while they’re still lucid and able to do things themselves, it’s easy to see why patients can often wait too long to use the law. With the law’s restriction on administration of the medicine being allowed only by the patient himself/herself, oftentimes the patient has become so weak that he/she cannot self-administer the medicine without assistance. At this point, because the law states that no one can administer the medicine to the patient but the patient himself/herself, the patient is no longer able to use the law. Even a doctor cannot be involved at this point. If a doctor were to administer the final medication to a patient he/she could be charged and imprisoned.
Although advanced directives are important legal measures to document your end-of-life wishes, the truth is that health care facilities do not have to honor a patient’s wishes. According to “The Patient Self-Determination Act” there is nothing in ORS 127.646 to 127.654 that requires any health care organization, or any employee or agent of a health care organization, to act in a manner inconsistent with federal law or contrary to individual religious or philosophical beliefs. No health care organization shall be subject to criminal prosecution or civil liability for failure to comply with ORS 127.646 to 127.654. [1991 c.761 §4]. Also a lesser-known issue is that between hospitals and medical facilities, there is often an unsaid code of respect for when a family has been denied their choice in care in dying. For example if one facility declines to allow a patient their choice in dying, there is pressure towards other facilities to “follow suit” should the family wish to move their loved one elsewhere. With medical facilities keeping a united front, the patient’s wishes are denied. As Dr. Kevorkian said on Fox News (in the video below), “If a patient consults with a doctor who is opposed to what he wants, then he’s in the wrong place."
The legal protections that health care organizations are given, also applies to physicians. Health care providers have no duty to participate in withdrawal or withholding of certain health care; duty of provider who is unwilling to participate according to ORS 127.625. (1) No health care provider shall be under any duty, whether by contract, by statute or by any other legal requirement to participate in the withdrawal or withholding of life-sustaining procedures or of artificially administered nutrition or hydration. The healthcare provider, without abandoning the patient, either discharge the patient or make a reasonable effort to locate a different health care provider and authorize the transfer of the patient to that provider [Formerly 97.070; 1993 c.767 §20]. As Dr. Jack Kevorkian said, “You have a right to refuse to participate in anything that assaults your body or your conscience." As a doctor, he saw patients suffering, and felt that his duty to help and follow his conscience was above the law. He discusses Einstein’s quote, “Conscience supercedes the law” and Hippocrates’ saying, “’You do what is best for the patient.’ and the patient knows what’s best for the patient in most cases.” Yet, even Dr. Kevorkian used more stringent safeguards than the present Death with Dignity law before assisting patients with end-of-life wishes. Instead of two patient consultations, he would conduct anywhere from 6 to 8 interviews making sure the patient was rational. Sometimes the interviews were held with family and or psychologists present.
Fear tactics by both the media and politicians have put a negative spin on end-of-life choice. Calling “Death with Dignity” suicide or calling end-of-life consultation a “Death Panel” stigmatizes the national dialogue and intimidates family and friends of individuals who’ve opted to use the Death with Dignity law from open discussion. Additionally, hospices even have their own points of view imposed upon their patients and volunteers. When we attended hospice training, we were told that hospice’s stance was that you were not allowed to be in the room with a patient who has opted to use the “Death with Dignity” law during the time they are taking the final medication. The volunteer’s role in comfort care is to make the patient comfortable as well as provide compassion, presence and companionship. However, if one of our patients were to use the law, we were unable to support their decision by being present with them. We were actually told to either leave the patient’s home or wait outside. We believe this is intended to dissuade the patient’s confidence in using the law. Therefore, although we believe in the natural right to our choice in end-of-life, to die without suffering, there’s much work left to be done to improve and address the needs of the dying in providing the best care possible.

What do you think the future holds for end-of-life freedom? Will we look back on this time, in decades to come, and see this as a dark period in this nation’s history (akin to the pre-Civil Rights Movement era)?

Dementia Care and Death Notification

For persons with dementia, one question not handled by advanced directives, is how to tell them when a loved one has died. One facility took the lead from the patient’s son.

Well, we just had a person die, and the son told the father. We asked him if they wanted to take the father to the funeral, and the family said no. The nurses themselves don’t really go into it. The son doesn’t think that his father remembers. I don’t know if his father remembers or not, but he doesn’t have a NEED to know. We don’t think it’s our business to say, “Do you remember your wife?” “Well she died.” To the demented person it doesn’t mean anything. We just meet the needs of the person individually. If it was a person who keeps on saying “where is my wife”, “where is my wife”, then we would probably tell him that we are really sorry, but that she had died. But then they have people walking around asking, “Did I get my pills?” “Did I get my pills?” You don’t have to keep repeating. So again it is just really individual. We also go off just what the family members want. It’s their family.

Many long-term care facilities use POLST forms to keep track of their patient’s end-of-life wishes. Some facilities also have on-staff social workers that can help families work through advanced directives for their loved ones.

Have you had the difficult choice of informing a person with dementia about the death of their loved one? How did you handle it?

Romance in Memory Care

Nursing homes have a responsibility to provide a safe environment for their residents. They cannot put patients in positions at risk to their health and romantic relationships are often allowed if in agreement with the resident’s family.

One facility’s method is to encourage friendship; but mostly try to discourage extensive physical closeness if there is dementia or physical impairment. “As care providers, we must allow individuals their freedom and independence to make those decisions.” Care facilities can hold weddings, allow for boyfriend-girlfriend, and same-sex relationships. Sometimes inpatient relationships can push limits. As one nurse describes it, “We do accommodate people’s sexual preferences and sexual needs even if they have a mild dementia.”

One caregiver describes a very happy couple that met at her facility. “Actually I just got a card from a lady who is not demented, but had lived here as a patient and was very, very sick. And she writes to her on January 19th of this year, ‘Dear everyone, some of your patients do get well, you make them better. I thank you for your medical care, and for caring for me as a person. I moved out in January. Just before Thanksgiving I met a man who was recovering from a bad fall. We fell in love like two teenagers and married in September. We wanted to let you know, thank you, and wish you a wonderful new year.’ So you know, the most amazing things happen. We try to help people to live and feel hopeful even if they have a medical diagnosis like dementia or some other condition.”

One couple with mild dementia married at the care facility. “They both had their faculties and the families encouraged the relationship. The man’s wife had died, so he got remarried.”

The facility retains a cautious stance on intimacy. “We don’t encourage behaviors that we cannot manage, or that they [the residents] can’t manage. We had a couple who were having sex right here in the garden room. It was pretty close for the staff, but we allowed them until it became a danger for the lady who needed oxygen.”

Sometimes the staff has to intervene with inappropriate behaviors. “We’ve also had men who fondle woman from time to time and it’s really inappropriate. When this happens we call in adult protective services. We had to warn one man, his wife lived across the street at the assisted living and he was in our memory care. And she had to tell him; you know if you don’t stop this we’re going to have to move you to an all male facility. Sometimes you have to move people to keep everybody safe. Despite all our efforts, sometimes folks are asked to leave. But we give them chances to reform before being kicked out.”

Have you had to discipline a resident who was acting out sexually? Or perhaps you have witnessed successful new romances grow at your facility? Please share.

Caregiving Journal - Misunderstandings

Today I had a miscommunication with Pa over coffee. Before starting to serve coffee I asked Pa if he’d already made himself a cup. He confirmed he had and I asked him if he’d added the new creamer in the fridge. He said he hadn’t and that he drank the coffee black.

So, I proceeded to serve my sis her coffee, then prepared my own. As I started drinking my cup, Pa asked, “Where’s mine?” I said, “Oh, did you want another cup? You usually don’t drink more than one.” Then Pa mentioned that he hadn’t had any coffee yet today. “You didn’t?” I asked, “but we just had a whole conversation about you making a cup of black coffee without the cream.” Pa corrected me, explaining that he hadn’t been talking about today, but another day. Needless to say, I served him a cup of coffee, but I wondered what exactly went wrong. Pa tried to blame the odd misunderstanding on the paper-shredder noise, but he wasn’t using it at the time.

So I think back to two weeks ago when the flu left me with laryngitis, and I had to whisper everything to communicate for 2 whole days. Pa told me not to talk to him until I got my voice back and sounded “normal”. While I was offended at the time, I now realize that it’s likely my whispers were unintelligible to him.

A week after that, my sister came into the room Pa was sitting in to ask her to turn down the volume to his computer. She was hearing the TV show Pa was watching in the next room, even though the door to her office door was closed, and Pa had headphones on. (Yes, he was wearing headphones and Sis could still hear the show in the next room with the door closed.)

In the last few weeks when I’ve tried to ask Pa something, he often does not respond. I usually end up calling him loudly to get his attention and then repeating whatever it was I said. If we haven’t made eye contact yet, he often isn’t listening.

I had interpreted Pa’s behavior as passive aggressive behavior or that he was mad about something. However recently, the last few times when I’ve walked up to Pa to tell him something, he’s jumped and clutched his chest out of fear from my having surprised him, even though I was talking as I walked up. I’ve now started raising my voice to gain Pa’s attention.

It’s becoming pretty clear that Pa’s hearing is a big problem. After 26 years working at the airport, the noise damage has taken a toll. It concerns me that recent studies have found that older adults with hearing loss have increased risk of cognitive decline, and Pa’s own mother died from dementia.  Pa has mentioned considering a hearing aid before. I think now’s a good time to start exploring his options.

Lessons Learned – 1) Don’t raise your voice. Get someone’s attention before speaking to them. 2) Get close to them when talking. 3) Make eye contact to be sure the person knows you are speaking to them.

Caregivers - Have you had a sensory perception misunderstanding? What did you discover? How did you augment it?

Dementia Care Plans in Practice (Interview 1)

This interview was conducted with a Supervising Resident Care Manager and Registered Nurse for people with dementia at a prominent Dementia Care Home.

Please describe your experience working with care plans:
We don’t do specific dementia care plans. Everyone here is demented, including the staff (no, just kidding.) We do a lot of teaching and individual care notes. We do individualized care notes for everyone. I don’t have a set book for persons with dementia only. We work with each person individually, maybe they won’t shower and we have to work with that. We have a whole program here to train people. We have a nurse consultant. We make the care notes up ourselves.

How long have you been doing this type of work?
Since 1980. I worked part-time as a nurse here for many years and since 2001 have been the dementia care nurse manager.

What training/education did you have to prepare you for the work you’re doing?
I went to nursing school and I have a bachelor of science.

What is your favorite part about working with people living with dementia?
Just having fun with everybody and enjoying the day.

What is the most challenging part about working with people living with dementia?
What we find challenging is trying to get people with dementia to do the things that other people want them to do. To gain their cooperation we try to work with the resident’s family caregivers to work with this person. This is the message that we try to teach - To truly enjoy being together. If someone is not happy with what your doing… They can’t think, they have dementia; YOU have to stop and think about what’s a creative way for the day to go smoothly.

Almost like children becoming more independent. They want to do things their way, but you the mother are trying to get them to do the things your way. Those are the types of power struggles and issues a lot of people with dementia have when they are still at home with their families. A lot of people don’t realize the other person isn’t thinking… The caregiver might get frustrated and start yelling so that really is the most challenging thing. Dealing with everybody’s anger and frustration when people just need to relax and figure out that they need to manage daily activities at the level where the patient is at. To realize there is a problem, recognize it and let go of some of the lifestyle habits that worked in the past and try to be where the person is now. To be with them where they are in a friendly and fun way. A lot of people don’t realize that somebody has it and they will just be screaming about why they are the way that they are. They need to acknowledge that the person now has an illness.

So how do you deal with helping the family to accept the person’s limitations?
Now when we get to meet the family, they already have the diagnosis. So now, anything that we want people to do, sometimes I have to say to a family member, we’re not going to give your husband a shower, he doesn’t want one. I have one family member who’s a nurse and she takes her husband home and showers him at home.

Other people we just say to the family, we’ll your relative doesn’t want to shower and we’re just going to wash her in the bed. Is that ok with you? We’re going to give them a “bed bath”. There are ways to take care of people who are really not getting that dirty. They’re not playing in the mud. When they get soiled, there are shampoos that we can apply and then not worry about rinsing them off. Creative ways to give good care to people without screaming and anger ruining everybody’s blood pressure.

Please describe how care plans are developed. Who has input into the process? Who can suggest changes?
Everybody in this building has individualized care notes.
We try to make the care plan in the voice of the person. For example I will write “I like my medicine with my lunch” “Please bring my pills at noon” “I like to take a walk everyday, please take me out”. Writing them in the voice of the person. “Please be gentle when you move my leg, I’ve had back pain for many years”. This is how we write them. We take a narrative approach using what you know about the person to create a plan of care that makes sense. “I need two people to help me transfer out of my wheelchair, I don’t walk anymore”. It’s the same thing with behavior.

So how do you develop the care notes?
Everybody who comes into the building, for every admission, the care manager writes the care notes and then after you gather a lot of information over the next two weeks we do paperwork and then make the care notes as individual as possible.

Who is responsible for communicating the care notes?
I do it. The culinary people do it. The activities department does it. But the initial care notes are always created by the nurse and then as time goes by the whole interdisciplinary team works on it; reviewing it at least every three months.

Today, we’ve gone electronic. We have touch screens so the aids who work with the residents. When they turn on the touchscreen to the person’s name, the care notes pop up. So they communicate verbally and through written material changes and things to do for people.

What do the words “person-centered care” mean to you?
Person Centered Care in Dementia Care is actually known as “The best friends approach”. i.e. If your resident is alert and oriented, you might say, “Hi Mrs. Jones, I’m here to give you a shower… Is that ok with you? Do you like your showers in the morning or at night? That’s when you can get information from people who can communicate and speak. But if your client cannot do that because their dementia is progressing, you might sit down and talk with them a little bit.

This is what we recommend: “Hi I’m _______, I’ll be your nurse tonight… I’d like to help you wash-up before I get you comfortable to go to bed. What would be a good time? 7 or 8 O’clock?” This depends upon the person’s ability. So that’s what we call the best friends approach. We talk to them more than the average person who can think and speak in a gentle way so that they will want to accept the care that we are offering. To get their permission.

If a patient starts yelling, our staff is instructed to stop immediately. Trying to keep the anger and frustration low. That’s the hard part. People cannot think, they cannot speak, and that is a huge communication problem. To work with their permission at their level of comfort. Make it fun; enjoy the day, that’s what we teach. That’s our message.

How do you ensure that the care plan is followed on a daily basis?
I can’t really ensure it. If something happens like somebody falls, I have to review it to make sure everybody knows. We are honest recorders, so when there is a problem, or if I see it, I call it to their attention whether it’s right or wrong. I also talk to staff about what things happened. Basically we have nurses, medics, all kinds of people walking around here, we are not in some individual’s home. There are a lot of people working to make sure the care notes are being followed. We offer families a copy of the care notes if they want it. The plan of care is unique to each person. In the old days, we used to use little index cards to write down details about a person. But so many of us are here for so long together, and the care is so consistent, that we just tell one another about changes.

Like the other day I found out someone liked tea with milk in it. So I added that to their care notes. Again, I’m not sure that everyone is checking the touch screen to review these details, but I advise them to do it. Especially then if something happens.

Can you tell me about some of the fun activities that go on there?
Well, we have so many people at various levels of functional and intellectual ability. If a person is just in their room, they will have one-on-one visitors and TV. Most people at in the assisted living home go out. They have outdoor activities for everybody there. In the memory care community they have extra activities three times a day. So we make sure that everybody is enjoying their day with music and movement, garden club, an accordion player who comes. We have a structured program.

Are care plans at work in your facility? Do you find them effective? If not, what alternatives do you prefer? Please share.