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Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

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?

Caregiving Journal - Lessons in Sensitivity


Today Pa had a doctor’s appointment. Pa phoned me at work shortly after I arrived to tell me to cancel his appointment. I told him it was too late to cancel. He said he’d go next week. I told him the appointment was this week, not next week and it was too late to change it. Pa said he knew my sister did not want to drive him so I told him I’d come pick him up if she wouldn’t. In the end my sister drove him, but told me how Pa didn’t want to go to the doctor because he didn’t want to spend money. Since the doctor’s appointments are not expensive, and take place seldom, I knew this was simply an excuse.

Later Pa was in good spirits after he saw his doctor, so I confront him. I ask why he didn’t want to go earlier and he mentions not wanting to burden us driving him. When I ask about the financial concern he mentioned to my sister, he admits that both issues bother him (spending money and burdening us to drive him).

A couple days before this, on a quick trip to the store shortly before they closed for the night, my sister decided not to take Pa along. Pa wanted to go, but they were just 15 minutes to closing and she didn’t think he’d have enough time to walk the place quickly. As Pa is just 1 ½ months post knee surgery, his walking is still labored.  Sis was being sensible, but not sensitive to Pa and they argued when she returned from the store. Pa took offense, stating that sis was embarrassed to be seen with him. While this was not true, it was how Pa interpreted being left out of the trip.

About two weeks before this, when I was sick with the flu, I had sis take Pa to his post-surgery follow up appointment. After the appointment, on the drive home, Pa phoned me from his cell phone asking to go out to eat breakfast. Since I was still sick, I asked that they go eat out without me. When they arrived at the house just a few minutes later, I knew they’d skipped breakfast. When I asked what happened, Sis said Pa wanted to come home, and for the rest of the day, Pa didn’t speak to either of us. Later that day, Pa blew up and complained that he wanted to eat out for breakfast. Pa was trying to be subtle by saying he wanted to go home, but he actually wanted to eat out with the family.

Lessons Learned – 1) We must be cautious of the things we say, even in passing, with our loved ones. Oftentimes with lessened abilities, sensitivity is increased and little things can be misinterpreted and considered offensive. 2) Sometimes convenience is hurtful. Try to include your loved one even when it may take longer or on the flipside, go out and do things your loved one wants even when it’s more convenient to stay home.

Have you and your loved one misunderstood each other? What things do you do differently to keep the peace? What did you learn?

Case Study - Caregiver Burnout


“Amy” is a sandwich generation caregiver who has reached a critical pointing her caregiving – “caregiver burnout” and has become short-tempered and desperate and misses many days from work trying to care for her mom, “Margaret.” The following information details how we could help support Amy and her family so Amy doesn’t lose her job, and Margaret continues to receive good care.
            On the Family Caregivers Alliance website, there is a page on working caregivers[1] with helpful questions we can ask Amy.
  1. Firstly, we have Amy consider what she needs help with and the times she needs the help. We know Amy has a job, and may benefit from being able to return to work, secure in knowing her mother will be well cared for, or able to attend doctor’s appointments in her absence.
  2. Second, we have Amy consider what level of care is needed for her mom, Margaret. Amy may like someone to prepare her mom meals, keep the house clean, or simply drive Margaret to and from appointments so Amy doesn’t have to miss work.
  3. Next, Amy needs to consider what type of in-home care Margaret’s Medicare or health insurance covers. For costs exceeding the insurance, we must consider how much Margaret can afford to pay, or perhaps how much her siblings are willing to split with her.
  4. Lastly, we need to help Amy to locate elder care resources near her home.
In considering that Amy has used up most her sick leave, and may be in jeopardy of losing her job, we start focusing on bringing in help for Margaret so Amy can continue working. Amy decides against a full-time live-in caregiver; costs can range from $700 to $3,000 weekly[2].  Since cost is a concern, we have Amy consider hiring in-home day help for Margaret. We ask Amy to consider an agency like “Visiting Angels[3] or “NW Senior Resources,[4]” where private caregivers can be hired to help out in the home. Amy will determine how long and for how many days of the week. We make a suggestion for Amy to start with hiring in help 2 to 3 days a week and that any and all appointments for Margaret will be scheduled to take place on those days so Amy does not miss work for them. The hired caregiver, will be given notes from Amy to take to the doctor, and a recording device to record the medical visits so Amy is able to catch up on what she misses.
            Next we help Amy look at Margaret’s Medicare benefits to determine coverage for in-home caregiving help. BenefitsCheckUp.org[5] is a good starting point for Amy. Here she can complete a questionnaire to find out what programs exist for assistance as well as benefits that may be covered for Margaret’s in-home care. We have Margaret complete the questionnaire entitled “For Older Adults and Families Raising Children”.[6] The questionnaire considers veteran status, abilities, housing, employment, programs of interest, finances (including monthly income for the household), assets, and the number of children in the household.
            Once Margaret’s Medicare benefit is confirmed. We help Amy consider how many days of care this will cover. Although we would ordinarily have a family consider the 50-50 rule, “the idea that adult siblings should divide caregiving responsibilities 50-50[7], for Amy’s two siblings who live over 1,000 miles away, this is impractical. For the remaining caregiving costs, we suggest that Amy negotiate a payment plan with her siblings so they can instead equally share the financial burden. Another alternative would be to split caregiving costs and time based on what each sibling may have to give. “One sibling may have a good income but live at a distance. This sibling could contribute more financially, while another sibling who makes only enough money to get by on can help by providing hands-on parent care that may keep down some of the costs. A third sibling may do a little of each.”[8] If Amy and her siblings are unable to reach an agreement, we may need to connect them with a family mediator to negotiate a caregiving plan.[9] Together, in a family meeting the mediator may be able to help them make a written agenda, listen, get specific about needs, divide up tasks and not to expect total equality.[10]
            Once payment and Medicare coverage is ironed out, we have Amy interview and select an in-home caregiver. After this process is completed, we help Amy to locate a volunteer for respite care to give Amy a break at least once or twice a week so she can recover and feel renewed. If Amy is unable to secure a good in-home respite caregiver volunteer, we help her to locate Adult Day Care services for Margaret. Perhaps just on Saturdays, Amy will have Margaret attend a local Adult Day Care so she can have Saturdays off.  According to “Sarah Care” adult day care is the most affordable type of senior care.[11] With Margaret at day care, Amy would have a bit of respite to rest and have some personal time.
We also want Amy to connect with other caregivers, and since she’s free in the evenings, we search support groups so she can share with others like her. Unfortunately the support groups we find in Portland, all run during Amy’s work hours. In Multnomah County, there are caregiver support groups that run from 2:00 – 3:30pm, 3:00 – 4:30pm.[12]  In Washington County, the caregiving support groups also run during business hours (2:00 – 3:30pm, 4:00 – 5:30pm, 3:30 – 5pm, and 10:30am – 12:00pm.)[13] We therefore help Amy decide that she may instead find a more convenient support network in a place like “Caregiver Village” online. “Caregiver Village members connect with friends, participate in book clubs with celebrity authors, journal, play mystery games, solve puzzles, and learn valuable information about caregiving.”[14] With an online support group, Amy can get started sharing with others right away, until she is able to locate a local support group that operates after business hours or on weekends.

Have you ever experienced caregiver burnout? How did you overcome your stress and did you have support?



Caregiving Journal - Making Time


The big outing for today was a 2-hour shopping trip to the grocery store. Now this may sound silly, but you don’t know Ma.

Ma can become cantankerous on shopping trips. If she’s not hurling complaints about the store itself, she may likely wander off in a place like Costco, where she can be impossible to find at the petite stature of 5 feet 2 inches.

But today was different. Ma was walking slowly, pacing herself through the store. We deliberated on each aisle, reading what it contained, and then deciding if we needed anything on it. She reminded me of things we needed that I’d forgotten. We negotiated and came to an agreement to pass on foods that weren’t diabetic-friendly (I relented on the Gluten Free Waffles.) We talked about veggies each of us liked, that neither of us knew the other liked (and threw some in the cart.) I asked her which meats she liked and she picked out a few types. And, as we finally ended up at the register with a full cart that took both of us to push, she was still in good spirits.

She chatted and joked with the cashier, then told her how she normally is forced to rush through the store, but today she got to experience it fully. Although this statement didn’t surprise me, as we usually do rush through the stores, it got me thinking.

Was all our rushing around causing her displeasure at the stores? If we simply gave her the time to shop (taking it slow to explore everything) would she find shopping pleasant, maybe even enjoyable? If this one trip was any indication of how to do it right, maybe it needs to be the guide for all future shopping trips.

What I learnedAllow for the time on the things your loved one enjoys - it may improve your experience and your interactions.

  What do you rush through that a loved one might want to take more time on?

Caregiving Journal - Hand-Picked

 
This week has been noteworthy for Ma’s protein consumption. The reluctant carnivore who often claims that the meat I’ve prepared makes her nauseous then gives her portions away to my husband, has not complained once about the meat this week.

This is a new record.

I started to wonder what might be causing my good luck this week and it dawned on me – the grocery trip. She selected all the cuts of meat herself. I expressed no opinions or objections, even though selecting meats is something that my husband or I normally do. This week she chose the meat and now mealtimes are complaint-free and pleasant.

What I learnedFolks like when they are allowed to be part of the decision-making. If a loved one is complaining about a certain part of their meals, have them help you select ones they prefer better.

What routines have you changed that improved a caregiving experience for the better? 

Caregiving Journal - Planning for Absence (Part 2)


Back from New York - Ma is elated we are home, though I notice Ma did not finish the pre-bottled protein shakes I left in the fridge.

Protein - She insists she told me when we were in NY that she didn’t like them and wasn’t going to drink any more of them. I recall the conversation - that she didn’t like them but never the part that she wasn’t going to drink them. This is bad news because Ma hates meat, and those were her replacements for the meat I would not be preparing on the days I was gone. If I had heard her say that, I would have insisted that she did indeed need the protein. We discuss this, and I go over the fact that the body cannot make certain enzymes without the proper proteins. Although she did eat the eggs I boiled for her, the protein was insufficient without the shakes. We discuss this fact as well, and how important it is for her to get the proper protein in her diet. Because she is diabetic she cannot get her proteins from beans (too high glycemic) and so she must get her proteins from animal sources (eggs, meats, cheeses).

Vision – Ma didn’t eat the salad I left her, although it was clearly labeled. She also said it took her a couple days to locate the cucumbers (they were in plain sight). She didn’t notice water that was on the next table but instead found the bottled waters near her on the floor. I’m not sure if she’s unobservant or having memory issues or vision troubles. Will have to ask the Naturopathic Physician she sees at her appointment this Friday.

Blood Sugar – Even though we discussed before the trip that maintaining her blood sugar means that she cannot drink pre-sweetened coffees (cappuccino for the Keurig coffee maker), I find Ma had 3 of these coffees on 1 day with the high blood sugar readings to match. We discuss this, and again I reiterate that only one pre-sugared coffee is safest for her. I remind her of the pathology involved if her blood sugar remains too high, diabetic neuropathy, peripheral neuropathy, and that avoiding the sugars helps maintain her own blood sugar and avoid those health problems. Even though Ma says nothing, I know she is listening.

Lesson Learned1) Even the best-laid plans can go awry. 2) If you leave your loved one home alone for a few days, have someone check on them to make sure they are eating & taking meds as planned.

Have you ever had a loved one not follow your instructions to their own detriment? How did you deal with it? Did it work?

Caregiving Journal - Planning for Absence (Part 1)


Intro - Tomorrow my husband and I leave for New York for the weekend, as Ma cannot stand long enough to cook and wash dishes, and has trouble managing all her supplements, I must plan ahead…

Food - Before the trip I head to Fred Meyer to pick up 3 days worth of food. I focus on items that are pre-packaged and ready to eat like veggie trays with dip, sliced up pieces of cheese, 2 boxes of rice crackers, cucumbers, avocados, tomatoes, prepared seaweed packs, and three packs of protein drinks (the low carbohydrate ones without sugar added). I also boil 1 dozen eggs and place them in the fridge in a clear glass dish. All the foods are low carbohydrate (low sugar) foods with high nutritional content. What is in the fridge gets labeled, so as easy to identify. Most items are in clear translucent containers for the same reason.

Medications/Supplements – All supplements are prepackaged up per day in empty (amber) prescription bottles. They are labeled 2 per day with the day and AM or PM below the day (e.g. Wed. AM). I give Ma all the bottles on 1 tray on her desk so she can take them accordingly.   Ma manages her own prescription medications, as she has just a few and the dosages seldom change. I mainly manage the supplements required, as those change based on how she’s feeling between visits and or based on new blood labs that Kaiser has run for her. Ma sees Kaiser for main medical issues but also has her care managed with a Naturopathic Physician (which I help to coordinate).

Lesson LearnedBuying pre-packaged serving packages really simplifies meals when you can’t be there to prepare food for your loved one or if he/she cannot prepare food for himself/herself.

Have you ever had to prepare a loved one for your absence? What helped you prepare? Please share here!

Book Review: Dancing with Rose - Finding Life in the Land of Alzheimer’s

Overview
In "Dancing with Rose: Finding Life in the Land of Alzheimer's" by Lauren Kessler, Ms. Kessler takes work as a Resident Assistant in a care facility for people with Alzheimer's. Although Ms. Kessler starts out at the care facility with the intent to make posthumous peace with her mother while learning enough to publish a book on Alzheimer's, Ms. Kessler soon becomes enmeshed in the lives of her residents. She builds relationships, grieves at the loss of others, works to cater to each person's specific personality and desires, and ends up keeping the job far longer than she ever imagined.

Ms. Kessler, who began her journey with many pessimistic views on Alzheimer's given the poor relationship she had with her own mother when her mother had the disease, does an about-face. Her initial negative views on Alzheimer's change, as she begins to express the disease as a complex and unique condition requiring patience, understanding, compassion and adaptability from caregivers. She learns to work within its confines and bravely shares both her successes and failures with her readers.

The Characters
Ms. Kessler, the author of the book, is the main character and the one through whose eyes we get a glimpse at all the other characters She is an author, on a caregiving assignment in a care facility, observing and interacting with residents who experience the effects of Alzheimer’s. In addition, Ms. Kessler is a mom, holds advanced degrees, and lost her own mother to Alzheimer’s.

The other characters, as portrayed by Ms. Kessler, are fun and multidimensional. She makes it clear they are authentic people, living real lives; they just happen to live in a care facility because they need some assistance due to memory loss. Although there are quite a few characters Ms. Kessler makes reference to, for the sake of simplicity, these are the characters we found the most intriguing.

Ella
– A large and quiet woman, whose only interaction with Ms. Kessler, affects the author deeply.

Eloise – A kindly soul who loves hugs. She has a local daughter who seldom visits, and usually complains about her mom’s care when she does.

Frances “aka Calm Guam Frances” - A veteran resident assistant at the facility and Ms. Kessler’s trainer. Frances is an understanding woman, known for being calm, compassionate and keeping everything under control.

Hayes - A former engineer and tall, slender man, who is constantly cold. He is always dressed well thanks to his loving daughter and often asks, “What’s next?”

Jasmine – A hard-working, single, young mom, and trusted co-worker of Ms. Kessler, who is determined break out of her minimum-wage job to improve her life.

Marianne – An independent, “tall attractive, well-dressed woman” (p. 79) who “believes she is an administrator” at the facility (p. 85).

Rose – An unconventional woman who does exactly what she likes and treats all the other residents of the facility like one big extended family.

Alzheimer’s as Hopeful and Positive
Throughout the book, Ms. Kessler portrays Alzheimer's as a hopeful experience. Sometimes, she even poses it as a mere inconvenience. For instance, when Marianne forgets when lunch will be served, and has to ask again twice more, Ms. Kessler does not see this as problematic. She instead praises Marianne's former successes, "This is a woman who graduated from college in 1948, a woman who figured out how to be a feminist while Betty Freidan was still working it out. Does it matter really, that she forgets when lunch will be served?" (p. 91).

Even when Ms. Kessler has a negative experience with a resident, she doesn't let it frustrate her. In fact, she relies upon the many positive interactions with the other residents to outweigh the few bad experiences. At one point, when an especially challenging resident, Rose, snuck into Hayes's room and "smeared her greasy, cookie crumb hands all over" his bedding, Ms. Kessler is clearly agitated at the extra laundering that had to be done (p. 101). However, she recovers quickly by focusing on the positive relationships with other residents. "I get a hug from Eloise. I pour Marianne a fresh cup of decaf. I kid around with Jane. I find my rhythm again" (p. 102). Ms. Kessler’s positive relationships with other residents help her to maintain good composure during the more difficult times.

Patient Centered Caregiving
Ms. Kessler tailors her care and interactions to the individuals she is caring for. She explains her fascination with her patients "I enjoy their company. Their dementias and delusions, their personalities, are fascinating and distinct. Figuring out who they are and what makes them tick is intellectually and emotionally challenging. It is also deeply satisfying" (p.93).

With resident Hayes, Ms. Kessler makes the connection that as a former engineer he needs "every process broken down into small steps" because it "must be how he lived his occupational life" (p. 95). She then tailors her care of him; "I will treat him like the methodical, systematic, organized engineer he was" (p. 95). She proceeds to explain every step in her care processes to him, which she finds helps comfort him by alleviating more of his concerns.

When introducing herself to resident Marianne, Ms. Kessler foregoes her normal greeting of "patting an arm or rubbing a back" (p.84). Instead, she matches Marianne's professional demeanor and formality and shakes hands. She also stays within Marianne's reality, asking "what would be appropriate questions and respond[ing] in appropriate ways if she actually were an administrator here" (p.86). Validation therapy is the approach she finds is helpful in working with Marianne (p.87).

Residents as Individuals
Ms. Kessler encourages us to see beyond the disease; to see people changed by Alzheimer's as individuals. Ms. Kessler also sees her residents as people, with personal lives and specific interests. In reference to a neighborhood with a few swinger couples, she says, "Officially, this is neighborhood 4, but Jasmine and I and the other RAs call it, with wonder and amusement and not a hint of condescension - 'Maplewood 90210' or 'The Old and the Restless'" (p. 78). She respects that residents have a right to explore their sexuality and to be in private relationships with other residents.

New Insights into the Lives of Family Caregivers
While Ms. Kessler’s book was centered mainly on caregiving within a memory care facility, she did touch on aspects of family caregiving. Ms. Kessler’s book illustrated just how much work it is to care for persons with memory loss and how varied the needs of residents can be, from those needing help with every aspect of living to individuals needing just helpful reminders. Ms. Kessler’s book also demonstrates how families can continue to care for their loved ones even after they are being assisted in a care facility by providing them good quality clothes, visiting them often, and maintaining good relationships with the care facility staff.

An Insightful and Inspiring Read

As a good friend likes to say, "You reap what you sow" and persons with Alzheimer's are definitely one great example of that. The openness, positivism and willingness to roll with the punches, as Ms. Kessler finds and expresses in her book, can make visiting and caring for persons with dementia a wonderful experience.

Alzheimer's: The Art of Losing

I found Ruth L. Ozeki’s piece, "The Art of Losing: On Writing, Dying, & Mom," of special interest because my grandmother suffers from Alzheimer’s. I wanted to learn how others deal with such a long-term loss of one who slips away slowly over several years. Though my grandmother’s health in other aspects is not bad, the fact that she cannot recall names, faces, places or family history is a death of sorts. It is a death of memory. Somehow families must push through with the awareness that their loved one is no longer who they once were in healthier times. We must learn to love a new person who looks a great deal like the old person, but may or may not remember us from day to day. We must learn to not hold anger or resent their loss of memories we revere, but learn to appreciate new memories we can create while they are still with us. I felt Ozeki really proved how important this step is. Ozeki’s adaptability enabled her to build new memories with her mother and prepared her for her mother’s passing. Ozeki’s piece was an inspiration to any person dealing with a loved one suffering from Alzheimer’s.

Ruth Ozeki discusses writing the article “The Art of Losing: On Writing, Dying, & Mom” which she was asked to consider renaming to “The Art of Letting Go”. Ozeki thoughtfully considers the alteration in meaning via a poem by Elizabeth Bishop titled “One Art.” Ozeki describes the poem as “clearly…a case where ‘losing’ and ‘letting go’ are not interchangeable.” Ozeki highlights some differences between letting go and losing: “When I let go, I’m in control; when I lose, I’m not. Letting go is a willful act; losing, a violation of my will.”

Ozeki then discusses the traditions her family’s Japanese culture and the custom of sitting zazen during spiritual meditation. Her mother as a 2nd generation Japanese American had so much distance from her Japanese roots that she did not meditate in the zazen position and this prevented her from attending her grandmother’s funeral. Her inability to sit in the position would be “an embarrassment to the family,” Ozeki explains. At the funeral in Japan Ozeki explains another Japanese custom called “honewake” or “dividing the bones, which is often practiced when a person’s family lives in different places.” She returned from Japan with some bones of her grandmother, which she was to deliver to her mother. The experience inspired her to film a documentary called “Halving the Bones.”

Once Ozeki’s father died, she asked her mother with Alzheimer’s to come live with her in 1999. She cared for her mother until her death in late 2004, but reflects on some of the exchanges that took place between she and her mother during those five years. Once mother expressed concern that the washer and dryer in the guesthouse she lived in would prevent Ozeki from washing laundry once she died and Ozeki rented the guesthouse to another person. Ozeki settled the concern by jokingly confirming she would bury her mom with the washer and dryer so she could keep her clothes clean in heaven. When her mother turned 90 in May of 2004, her mom was in disbelief that she was 90. She said she felt forty and when Ozeki confirmed that even she was “older than forty,” her mother replied, “You are? That’s terrible!”

Ozeki then reflected on the differences in how she handled the deaths of her father and her mother. When her father died, she wasn’t ready for it. She held much anger at him for not preparing for it. She drank too much during the grieving process. However, the time she spent with her mom prepared them both for her mother’s death. “I wanted to keep my wits about me. I didn’t want to run away." She also encourages that people “write your loss” – “I spent ten years losing my mom, little by little, day by day, but during that time, I wrote books, letters, e-mails, blog postings, stories, journal entries, and poems…I’ve been turning loss into letting go.”

Reference:
Ozeki R. L. (2008). The Art of Losing: On Writing, Dying, & Mom. Shambhala Sun Magazine. Retrieved from:
http://www.shambhalasun.com/index.php?option=com_content&task=view&id=3186&Itemid=244
All content © Village Memorial. 2009-2010.

Independence vs. Assistance

The elderly should be mindful of how much help they accept and caretakers should be cautious of offering too much help are the fundamentals of an idea called “wise independence”. Ruddick (1999) describes the idea of wise independence as “the capacity to plan and control one’s life, combined with the willingness to acknowledge one’s limitations and accept help in ways that are gratifying to the helper.” The elderly person and his or her caretaker should “create between them and for each other a workable balance between letting go and holding on, assertion and acceptance, intervention and letting be” (Ruddick, 1999).

A real risk exists when people let go of their independence to become too dependent on caregivers. Ruddick (1999) explains that, “a caring person should know that if she hovers and insists she may encourage in the person she cares for a despairing acquiescence that is as life-ending as the ‘fall’ she would prevent” (p. 58).

Clark (2003) experienced this situation with her mother who moved into a “nursing home for a few weeks rest.” Although her mother, in her late 70’s, had suffered debilitating arthritis for many years that was so bad that “she probably would have been confined to a wheelchair”, her independent life prevented it. Clark (2003) explained how “her [mother’s] need to do for other people was so great that she kept pushing herself, forcing activity on those aching joints willing them to function.” However, shortly after Clark’s mother entered the nursing home, she witnessed a drastic decline in her mother’s energy. Clark (2003) described that “as soon she began to take it easy, everything in her body slowed up…She could no longer take care of others” and she died a few weeks later.

A similar decline is occurring in an elderly relative who recently entered a retirement home. Pedro, who is in his mid 80’s, lived independently as a retiree without any caregiving assistance until two years ago when he suffered his first fall. Pedro. tripped over his rambunctious dog, Nero, and suffered a minor injury. Since then, Pedro began to accept the help of a caregiver. As Pedro began to increasingly rely upon his caregiver he did less for himself. He delegated errands, shopping, house care, yard care, and personal budgeting to his caregiver and thus began to require even more help until he moved into a retirement home in June this year. Since his arrival at the retirement home he has fallen multiple times. The last fall resulted in a broken elbow. He has since been hospitalized.

When Ruddick (1999) explains that “both living and caring well involve a changing process of adjusting, accepting and appreciating the living and caring that remains possible,” (p.58) I see how a lack of “wise independence” negatively affects the elderly. I believe that Pedro’s comfort level with caretakers just minutes away has led him to be less cautious when walking or moving about his apartment. In this sense, Pedro is becoming even more dependent on the caretakers and much less independent. I now fear for Pedro’s health, that it might decline even further now that he has no requirement to care for himself.

Wise independence is not merely just an encouraging idea; it is a vital component in the health and longevity of the elderly. Caregivers and the elderly must be mindful of the independence vs. assistance balance, so they do not create excessive vulnerability and dependence on the caregiver(s).

Reference:
Clark, M. H. (2003). Kitchen Privileges. New York: Simon & Schuster, Inc.
Ruddick, S. (1999). Virtues and Age. In M. U. Walker (Ed.), Mother Time. Women, Aging, and Ethics. (pp. 45-60). Lanham: Rowman & Littlefield Publishers, Inc.

All content © Village Memorial. 2009-2010.

Selecting In-Home Caregivers

Marion is in her 90’s. She lives alone, but is across the street from her son and his wife. Her children have hired many caregivers for Marion. However, Marion is never invited to interview or choose her caregivers. So, the result has been that Marion often goes without care because she frequently dislikes who has been selected to care for her and usually fires the person or drives them away with menial tasks unrelated to caregiving (i.e. pulling weeds). This has left Marion in an unsafe situation - without regular care.

Once when Marion was chosen a caregiver she got along well with, the benefits of good communication were obvious. Because Marion was instructing the caregiver in what she wanted and needed done, Marion was happier and more responsive during visits. The caregiver made sure she got up and dressed every day (as opposed to sleeping in bed all day in pajamas). She helped Marion to look presentable, even helping her to dye her hair red. Marion was eating regular meals, looking healthier and feeling better. She boasted how good it felt to have her back scrubbed during her bath. She stopped falling trying to use the restroom during the night (perhaps because she did not sleep all day, she had more opportunities to go during the day.) This caregiver contentedly worked with Marion for over a year until Marion’s son cut her hours back and she was forced to move on.

The lack of communication between Marion and her children has been a losing situation for Marion’s health and wellbeing. Marion does not communicate her wishes to her children because she feels they do not care (likely because she is never included in the decision making). Marion does communicate her concerns to her grandchildren, but they have no control over the finances, Medicaid, or care giving decisions.

As in-home care is highly personalized, communication is key. If a senior is of mental clarity and can communicate for herself, this is ideal. This gives the senior a voice and a decision in the administering of her own care. However, when family members step in and make decisions without the senior’s input or consideration, as Marion’s family did, this is highly destructive to the senior’s sense of independence, as well as the quality of care she receives.

A properly placed caregiver, sensitive to the client’s personal needs, would ensure better care and a greater longevity of caregivers. Simply working in firms that had high turnover rates, one gets a glimpse of the stress that training new people or adjusting to changes in staff creates. I cannot begin to imagine how just how stressful it would be to add a turnover in caregivers to dealing with one’s own personal disabilities or unattended needs. It cannot be healthy for seniors to deal with such turnover, which makes the initial proper placement such a vital step in the care giving process.

Benefits of In-Home Care
• Significant financial savings to seniors and Medicaid
• Staying in one’s own home is generally preferable to entering a retirement community.
• People tend not feel sick if they are cared for at home.
• People are able to maintain some forms of independence, as they address some of their own needs themselves or by delegating difficult tasks to an in-home caregiver.
• Seniors do not have to lose the community they have grown comfortable with.


All content © Village Memorial. 2009-2010.

APS, Family Rights & Challenges

The recent hospitalization of my grandfather led me to make an emergency trip to San Diego to check on his well-being. When I arrived I found my grandfather unable to walk, eat or swallow. He was somewhat confused, though he did say he had not seen my grandmother for several days. I tried to locate my grandmother, but could not find her. After checking with the charge nurse at her nursing home facility, I was informed that my grandfather’s power of attorney, filed eight years ago, gave him legal rights to authorize a dubious caregiver to remove my grandmother from the retirement facility and relocate her to the caregiver’s home. Apparently despite the recent decline in my grandfather’s physical and mental health, the power of attorney still held legal precedence. My lack of power of attorney or a conservatorship over my grandparents, restricted the police from acting on my request to remove my grandmother from the caregiver’s custody or terminate the caregiver. The police could only perform a “welfare check” and recommend that I contact Adult Protective Services (APS) for further assistance.

Adult Protective Services, in California, is an agency that helps seniors of 65 years and older and dependent or disabled adults between the ages of 18 to 64. On the California Department of Social Services it breaks down the assistance provided by each agency: APS assists when seniors or disabled adults are “unable to meet their own needs, or are victims of abuse, neglect or exploitation”. APS investigates abuse of elders or dependent adults in “private homes and hotels or hospitals and health clinics when the abuser is not a staff member”. The California Department of Aging is responsible for investigating abuse that takes place in nursing homes, board and care homes, residential and long term care facilities. The California Department of Health Services “handles cases of abuse by a member of a hospital or health clinic.” The APS evaluates “abuse cases and arranges for services such as advocacy, counseling, money management, out-of-home placement, or conservatorship” as well as providing information, referrals to other agencies and public education of “Elder and Dependent Adult Abuse Reporting laws.” The services of APS are available to all regardless of income level (CDSS, 2007).

When I called the San Diego County APS on Saturday, I was dismayed to get their answering service, which informed me that their business hours were weekdays only from 8am to 5pm. I did however find a form on their website called “SOC 341,” a “Report of Suspected Dependent Adult/Elder Abuse.” The “SOC 341” form has sections to be filled out for information on the victim, suspected abuser, and reporting party (along with an option to waive confidentiality to specific parties or all). The form asks for incident information and designates two types of abuse categories. The category “Perpetrated by Others” offers a checklist for abuses of assault/battery, constraint or deprivation, sexual assault, chemical restraint, over/under medication, neglect, financial, abandonment, isolation, abduction or other. The category “Self-Neglect” offers a checklist for abuses of physical care, medical care, health and safety hazards, malnutrition/dehydration and other. The next section, “Abuse Resulted in”, has check box options for physical injury, death, mental suffering, minor medical care, hospitalization, care provider required or other. The last five sections ask about the reporter’s observations, targeted accounts, other people believed to have knowledge of abuse, others responsible for victim’s care, and report information.

While I was impressed with the depth of information that the APS form requires, I was displeased with the inability to contact APS on the weekend. The fact that my grandmother was in the custody of an untrustworthy caretaker, who was responsible for the disappearance of my grandfather’s car and miscellaneous valuables from their home including jewelry, antiques and furniture, led me to investigate a conservatorship further. Similar to guardianship of a minor, “a person under conservatorship is…a protected person” (Wikimedia, 2009). “A conservatorship can be set up after a judge decides that a person (called the "conservatee") can't take care of themselves or their finances. Then the judge chooses another person or organization (called the "conservator") to be in charge of the conservatee's care or finances, or both” (California Courts, 2009). My mother, now seeking a conservatorship of my grandparents, has to submit addresses of several relatives for notification. Both my grandfather and grandmother will be interviewed by social workers and my mother’s background will be investigated to consider her for the conservatorship.

At present financial abuse of the elderly is on the rise since the economy has collapsed. As seniors “usually have steady income -- Social Security and sometimes pension checks”, they are targeted in turbulent economic times. Although people generally consider “financial abuse…[as] phony investment schemes or Internet scams…attorneys say just as common are instances of exploitation perpetrated by a loved one or friend”. The most usual suspects of financial abuse are “in this order -- family, caretakers and new best friends”. Protecting seniors proves difficult if they have given authorization to bank accounts or signed over a power of attorney to the abuser. Without a power of attorney or conservatorship held by a trusted family member or friend, seniors continue to remain at risk.

While it is commendable to have an agency devoted specifically to the protection of seniors and disabled adults, APS needs to be available like other emergency services – 24 hours a day. APS should also work to make the public fully aware that without the legal action of a power of attorney or conservatorship, families will not be able to protect their loved ones.


References

Adult Protective services (APS). (2007). California Department of Social Services (CDSS). Retrieved from: http://www.cdss.ca.gov/agedblinddisabled/PG1298.htm

Conservatorship. (2009). Wikimedia Foundation Inc. Retrieved from: http://en.wikipedia.org/wiki/Conservatorship

Duties of a Conservator. (2009). California Courts Self-Help Center. Retrieved from:
http://www.courtinfo.ca.gov/selfhelp/seniors/duties.htm

Jun, C. (2009, July 27). Financial abuse of elderly rises as economy sinks. The Detroit News. Retrieved from: http://www.detnews.com/article/20090727/METRO/907270338/1409/METRO

SOC 341. (2006). Report of Suspected Dependent Adult/Elder Abuse. State of California. Health and Human Services Agency. Retrieved from: http://www.dss.cahwnet.gov/cdssweb/entres/forms/English/SOC341.pdf

All content © Village Memorial. 2009-2010.

Arranging Care with Community Calendars


When families and friends share responsibilities for the care of loved ones, coordinating schedules, errands and tasks can become cumbersome. Simply trying to figure out who is taking grandma/mom/dad/uncle to the doctor, to the pharmacy, or shopping, can amount to hours spent of the phone arranging and planning. Lotsa Helping Hands has developed a free website to help alleviate such issues.

Lotsahelpinghands.com allows one to act as a coordinator and build a community of family and friends who may all share access to one calendar. Each member of the calendar can access it privately on his or her own computer. Once logged in, a member can see which appointments and errands are on the calendar, which events another person has already signed up for, and which events are open so he or she may sign up for openings that work within his or her own schedule. The calendar even sends out email reminders so no one forgets their assignment.

Calendar events listed can be as specific as necessary to be certain everyone is clear about what exactly is needed. “For example, the request to receive weekday dinners would specify the desired days and times, dietary restrictions, and delivery instructions. Or if a family requires transportation, they can easily specify pick-up and drop-off times, locations with direct links to Google Maps for directions, and appointment durations” (Lotsahelpinghands.com, 2009).

Private message boards are also open for members to share “photo galleries" and "resource sections for sharing relevant web links and documents” (Lotsahelpinghands.com, 2009).

Reference:
How it works. (2009). Lotsa Helping Hands. Retrieved from: http://www.lotsahelpinghands.com/how/

All content © FateCare.com. 2009.

Widows Face Caregiving Needs Alone

Many friends I have are either widows or in second or third marriages to younger men. The fact that women outlive their men is a fact many women will face, though I see the strength it has provided some of my friends. My good friend Lily, widowed for four years, says she can now eat what she wants, when she wants, and without complaints. She cleans the house and kitchen and it stays clean for days or until she messes it up herself. She travels alone on long road trips to visit friends or family. She spends time pursuing her multiple hobbies and interests without anyone to hold her back or complain. Without her husband to stop her, Lily was finally able to sell and move out of the house they shared and move into a smaller apartment, something she’d been wanting to do for nearly a decade. Lily is just one of the women I’ve seen thrive in widowhood. As Ray (2004) refers to Helibrun’s essays, “the move toward self-knowledge and authenticity, the freedom to choose our own projects without guilt or self-recrimination, the importance of perpetual becoming – vibrate with crone energy” (p. 116). For my widow friends, life as a single person in later life has not been a death sentence but key to freedoms unavailable to them during marriage – namely “crone energy”.

Not only do most women outlive their spouses and live many years alone, their health in later years may require additional caregiving. If they have been long time caregivers beforehand, they may have spent or lost opportunities for significant retirement savings. “‘Women who take early retirement or otherwise modify their employment to provide care not only lose wages and wage-related benefits, but also jeopardize their own sources of income for their later years’” (Holstein, 1999, p. 233). When women begin to need long-term care themselves, lack of funds can create complications as “Medicare does not reimburse long-term care and covers home health care only if there is no one at home to provide it” (Nelson, 1999, p. 90).

“The longer lives of women and the relatively older ages of men at marriage mean that men have spouses to care for them while women are likely to be widows” (Holstein, 1999, p. 230). Considering my friend Cat’s second husband turns 80 years old next year, and she is still in her 50s, she will likely outlive her husband. In later life, she will probably require an in home caregiver or need to move to a retirement home. She will be just one of many women facing her caregiving needs alone.

References:
Holstein, M. (1999). Home Care, Women, and Aging: A Case Study of Injustice. In M. U. Walker (Ed.), Mother Time. Women, Aging, and Ethics. (pp. 227-244). Lanham: Rowman & Littlefield Publishers, Inc.

Nelson, H. L. (1999). Stories of My Old Age. In M. U. Walker (Ed.), Mother Time. Women, Aging, and Ethics. (pp. 75-95). Lanham: Rowman & Littlefield Publishers, Inc.

Ray, R. E. (2004). Toward the Croning of Feminist Gerontology. Journal of Aging Studies. 18.1. (pp. 109-121).

All content © Village Memorial. 2009-2010.