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.[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? 

Assisted Living for LGBT Seniors

Case Study
Robert and Jack are a homosexual couple, both in their 70’s, looking into assisted living options for their future needs. They have two preferences: a community that is supportive of their lifestyle and one that is intergenerational. The couple does not have financial difficulties that would limit their choices in facilities, so this is not a barrier to their search.
First Preference Options: Communities in Existence or Under Development?
            As Robert and Jack seek a supportive community that isn’t predominantly heterosexual, I might suggest they look into an LGBT retirement community. On the GLARP (Gay and Lesbian Association of Retiring Persons, Inc.) website, there are listings of retirement communities that already exist as well as some in the planning stages[1].
Since Robert and Jack are both in generally good health, they might be interested in looking in into the communities currently under development or those with plans to open an assisted living portion of the facility. The GLARP is working on a “Desert Resort Retirement Community”[2] where seniors can move in healthy, transition into assisted living, and then into a skilled nursing center. According to their site, “GLARP is in the course of securing a parcel of land within Palm Springs, California.” Other facilities in the planning stages include “Rainbow Visions” of Santa Fe, NM and “Stonewall Community” of Boston, MA.
If Robert and Jack prefer a community that already exists, so they may visit and get a feel for the place, we may want to explore other options. On the GLARP website, they list a GLBT retirement community, “Palms of Manasota” in Sarasota, Florida, with plans for opening an assisted living facility in their already existing retirement community.[3] In Gresham, OR, the “Rainbow Vista” describes itself as “Active Gay Living Community” and accommodates senior living for those ages 55+.[4] However, like the “Palms of Manasota”, “Rainbow Vista” does not presently have an assisted living facility[5], which would make “Rainbow Vista” a poor choice for Robert and Jack’s needs for continuing care. In Santa Rosa, CA, the new “Fountaingrove Lodge” expected to open this year is “a retirement community being built primarily for gay men and lesbians”[6]. Fountaingrove Lodge is first in the nation to combine “independent living and continuing care, including assistance for those with failing memories” specifically for gay men and lesbians.[7]
Second Preference Options: Intergenerational Experiences
            Although it appears most retirement communities are not intergenerational in residency, there are alternative options that could meet Robert and Jack’s needs. Places like “Friendly House” in Portland, OR connect “all ages and backgrounds through quality educational, recreational and other life-sustaining services”[8]. Also providing intergenerational experiences is “GenTog” in Tigard, Oregon, where seniors and children can spend time together as part of an Adult Day Care program.[9] Although these intergenerational activities would take place outside the retirement/assisted living community, they could help meet Robert and Jack’s needs to engage in activities that are intergenerational.
For Robert and Jack, “Fountaingrove Lodge” appears to be the best fit because it provides transitional care, caters to gay and lesbian seniors, and is opening soon. For intergenerational experiences, perhaps they can suggest or work with “Fountaingrove Lodge” to improve activities for the community by including younger generations for special events or happenings. Their other alternative is to seek intergenerational community day activity centers for intergenerational experiences. Either way, Robert and Jack can still meet their intellectual needs while receiving the care they need in a community that understands and supports their lifestyle.

Have you or your loved one experienced difficulty or success finding a retirement community or assisted living facility that supports a LGBT lifestyle? Please share.


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!

Fond Farewell - Vivian Brown (1927 - 2013)

Fashion icon Vivian Brown, one of the beloved San Francisco twins, has died at age 85 after suffering complications from a fall last July.

Vivian, and twin sister Marian, became icons of San Francisco over the last 40 years. Best known for their matching outfits and hairdos, the twins shined in several commercials including Reebok, IBM, Virgin Atlantic Airlines, AT&T, Dell Computer, Atachi, Apple Computer, Joe Boxer shorts and Payless Drug Stores. They also appeared in a variety of television shows and films.

Did you know?

  • The twins were born in Kalamazoo, Michigan.
  • Vivian was the older twin by 8 minutes.
  • Richard Branson once flew the twins to London for Virgin Atlantic and took them shipping at Harrods. 
  • The twins appeared in a variety of skateboard films as icons of San Francisco's Embarcadero Center.
  • The twins lingerie even matched.
Did you meet the twins? Let us know - Share your story below.