Feeling sorry for myself until . . .

 Downsizing isn't fun.  Everyone (almost) says so and has advice. There's a lot of sadness in going through items packed away and forgotten. Bob has old architectural drawings (masterpieces in my opinion in this day of computer generated plans and materials from classes he taught) and I have old essays, notebooks, poetry and memorabilia to sort through.

As I drink my morning coffee today I'm going through Christmas 2019 letters and cards. They were temporarily packed away in 2020 because of their notes and letters, but not repacked in the "big" box of treasures (going back 50+ years) because we had all of Phil's things to take care of that year of Covid. I stopped to re-read this one from Marion.

Marion is gone now; she died a few months after dictating this message. We met at Lakeside years ago at a lecture on healthy eating. The room was packed, and we were side by side in the back row. That's unusual for me--but a long friendship developed.  I noticed she carefully made notes in a small notebook, and as it turned out she was also a librarian, and we had many of the same interests. Our husbands became acquainted, and they also had similar interests like sailing and Lakeside history and architecture and served together on the Design Review Board. Shortly after they sold their adorable Lakeside home (perhaps 2017 or 2018) she was diagnosed with ALS. This was her Christmas 2019 message:

"Although I can't walk and my speech is limited due to the progress of ALS, I am grateful for many things this Christmas season.  My philosophy of living with ALS is to focus on the living and what I can do.

We have a handicapped van with a ramp so I am able to get out of the house. I go to church, the grocery store, shopping, and weekly to have my hair done.

I was in nursing care for five weeks after a week in the hospital with aspiration pneumonia but now I am so happy to be home again.  We were able to make home modifications such as a ceiling lift to get me in and out of a hospital bed.

I look forward to monthly ALS support group meetings and communication with other patients who are mostly men.  I am often the only female attending with ALS. I can read and my book club comes to my house for meetings.  They even came to the nursing facility to do a book discussion.  Friends call, come to visit, send beautiful cards, and bring food and flowers.  Thank you, dear friends.

I am able to go to monthly Lucas County Retired Teacher meetings and still serve as secretary on the Board of Directors.  A hospice nurse checks on me at home each week.  I can help prepare meals by making salads and fruit for lunch.

Jim is with me every step of the way.

Remembering you this Christmas with a wish and prayer for all the best."

Oral care for tips for caregivers

I get many inquiries to review books and to post items on my blog. Most I don't accept, but this one on dementia and dental care is one I hadn't thought about. Now that we're not looking at mask mouth (I hope), time to look at mouths.

https://www.newmouth.com/resources/dementia/There are several things caregivers can do to help maintain good dental health for people with dementia.

For example:

• Help the patient brush his or her teeth after every meal. If this isn’t reasonable, have them rinse their mouths out with water after eating or a few times each day. Or, consider wiping out their mouth with gauze or a wet cloth, especially after consuming sugary foods and beverages.
• If you’re reminding someone how to brush, offer short, simple instructions. Go step-by-step and be as patient as possible.
• Demonstrate by brushing your teeth. Brushing together is a great way to help people with dementia remember what they should be doing. It also avoids embarrassment in the early and middle stages of the disease.
• Find a dentist who has experience working with dementia or other special needs patients. This makes those twice-yearly visits less stressful. Also, make sure the patient’s dentist has the contact information of other healthcare providers caring for the patient.

Lakeside nostalgia--guest blogger Jennifer Mathews-Santulli

We have sold our cottage in Lakeside, but are leasing it for the final summer.  The air conditioning died 2 weeks ago, and is being installed today ( for new owners, of course).  It feels different, of course, especially since several in our neighborhood haven't returned due to illness, or busy schedules "back home" (usually doctors' appointments and grandchildren's activities).  I noticed this very nice nostalgia piece on Jennifer's Facebook post today.  I knew her mother--and perhaps I knew Jennifer when she was a little girl playing in Perry Park which was near her parents' house and the first cottage we rented back in 1974. She gave permission to repost it here, so enjoy a peek back.

"It was very hot and humid all day yesterday. Portable A/C units blasting all day… for the relief of it in a few rooms in the cottage. It is nothing fancy but we love it that way… it’s like going back in time to Mayberry… you don’t have to lock up your bikes in the park… chances are, if you forgot it last night… it will still be there in the morning. Right where you left it. Unless some kid took it on a late night joy ride… and it will be discovered 4 blocks away discarded after the fun. Some neighbor will recognize it from a lost bike sign and you’ll go pick it up. Last night, I listened as I heard the American flag start to flap… after dropping heavy and low thru the heat of yesterday. It’s a welcome change and you snuggle in tight with a smile. You know that the northeast winds have blown in and will chase the thick humidity away leaving a crisp chilliness. Great sleeping weather. Perfect for reading on the porch.. or taking a nap. Everybody is out riding bikes and golf carts… kids racing, cousins reunited, birds and squirrels chirping and scurrying for seeds and bugs. Rushing to or from summer jobs up here… or out to pick up some forgotten BBQ or picnic supplies.

 
In my opinion, this is some sort of surreal little pocket of heaven which I have been so lucky to be a part of all these years of my life. Again, unlike the new trend of leveling the older cottages and rebuilding up newer versions of themselves, our place is almost still original, save the shower updates in which my mother had the beloved Victorian tubs hauled away… and kitchen updates years ago… but the memories we have made in this place echo in my heart and mind all thru these years. I had first loves in this place, and brought my fresh faced new fiancé here. I nursed and rocked my babies under the moonlight rocking on vintage white wickers… until they snoozed back in bed. I taught my 3 girls how to ride their bikes or paint rocks or sing Bible school songs here. We experimented with food options and became instant chefs for only our people here. I walked dogs by the beloved great Erie lake shore here in the day and nighttime, being leery of running into midnight “friends” of the skunks or raccoons. I have stood face to face with a deer or coyote in the predawn’s light going down to the lake front. What a thrill… I had late night boat rides with old boyfriends… watching the bobbing lights on the nearby Islands… that feeling of being so young and free… and alive. I am still friends with many of these people still today… it doesn’t matter how different our lives are or have taken us… we all share that “Lakeside Bond” that does not seem to break. That’s what is so great about old friends and most especially up here.

 
I have met celebrities while being a young waitress across from the concert venue… serving them food and having the opportunity to chat awhile. And experiencing the MAGIC of hearing them play in that great and unique auditorium.. something so intimate and “back in the day” that never goes away. Magical nights when the wind turns during a program and gusts welcomed breezes to the performers.. sometimes bringing them to change their intended set list to something more intimate. Including the audience because they feel Lakeside’s spell, too.

Conversely, I have nursed my dying mother here in this cottage… watching her great light fade away slowly while secretly begging God for a miracle so she could stay awhile longer in this place… my 3 girls spread around her holding her hands and whispering gratefulness for what she had brought to us in this place… a second mother to them really… after my sad divorce. What memories we share singing and reading and taking walks and telling stories. . . playing cards games or “chicken foot” dominoes with their Nana.

 
And now I am caring for my elderly Pop. He’s still kicking it but very frail. Still hanging on. We go back and forth some . . . he’s much grumpier than my mom ever was but still . . .  he’s my dad and I love him. He took me fishing off his wooden Lyman boat.. we caught two at a time on perch double hooks. I got many a suntan on that boat . . .  while my dad and my brother fished. We drove to Canada to Pelee island and bought our English tea cups and woolen wear counting our Canadian coin change.

 
So many memories . . .  such a different life than my other 10 months of teaching in a Title One school in an Atlanta suburb. I love Lakeside for all it has given to me and my family. It always goes by too fast… And I will never forget it.

On being a caregiver

It's been 2 weeks since our son Phil died, and I may write more of my reflections (and advice to others) at my blog when they come to me. Let me first say it is a privilege to be with a loved one when he is dying, although it will be the most difficult thing you'll ever do. Phil was Phil from the beginning to the end, and although that could be very frustrating when we wanted him to go a different direction or not cause self-harm, he was also a testament to God's creative power. From the moment of our conception to the moment of our last breath, we are the same person going through stages. Jesus has ennobled our frail human bodies that get sick and die, and from here on Phil has no bounds.

When we got the call from hospice in February we were totally unprepared--we thought Phil would be continuing his chemo and battling his brain tumor. It was an ugly fight, but he was determined to stick with the treatment. The appointments were on the calendar. But with hospice, treatment stops and palliative care begins. Our weekly visit and daily phone calls turned into 24/7 care. Because of HIPAA and Phil's personality, we knew little about his treatment or glioblastoma, only what we'd been able to learn on our own. We didn't live in the same community and knew nothing about his financial situation. The national situation almost eliminated our familiar support network. And we were so wrong about so many things.

Imagine (if you are about my age) you know how to drive a car--you've been driving so long it's almost second nature. But it's becoming difficult and you no longer do the free ways and stay with the streets you know. You vaguely remember how to drive a stick shift because you learned that as a teen (or in my case, your husband has one). So, these two nice ladies you've never seen before pay you a visit, show you a 1950s era pick up truck, put you behind the wheel, and say, "Don't worry, we'll teach you what you need to know." Meanwhile you're headed for the entrance ramp to drive through the center of Atlanta at rush hour, or Chicago through 50 construction zones at night. In a pick up truck you don't remember how to drive. At every stop light, a different person climbs in the cab and reroutes you--no map, no GPS. Sometimes at night something breaks down and it takes hours to get help. Fortunately, there are some hitch hikers to pick up along the way who really do help and explain things.

If you've been or will be a caregiver, your mileage will vary; spouses have rights and relationships with the medical system, financial institutions and social networks that parents and adult children don't have. The same people who are there to help may also say, by law we can't advise you, or that's not my area of expertise.

If you are healthy now and have no worries, pause and reflect. Two days before Phil was diagnosed we'd had a birthday lunch at the Chef-o-Nette in our old neighborhood and we knew nothing about what would be coming on October 1.

The Orientation and Disorientation of Caregivers by Peter Rosenberger, guest blog

By Peter Rosenberger author of 7 Caregiver Landmines and How You Can Avoid Them

 

(Available in Kindle and Paperback from Amazon) Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years.

https://www.youtube.com/watch?v=zete6PeZozA

https://www.youtube.com/watch?v=FKxgyymMy4c

“Walking into Waffle House for breakfast, I held the door for two men. The younger man awkwardly helped his older companion with a walker and oxygen tank. No stranger to these things myself, I waited for several moments while nodding to the younger man. Mustering a sad smile, he expressed his gratitude for my patience.

As they slowly exited, I stepped in—only to be stopped by one of the longtime servers. “Peter, go out there and talk to that young man! His name is Randy, and I ain’t serving you breakfast ‘til you do,” she stated forcefully.

Decades of Waffle House visits with her taught me that disobedience usually involved a tongue-lashing. And, she really wouldn’t serve me until I talked with him.

Dutifully returning to the parking lot, I approached Randy, stuck my hand out and said, “I was told to come out here and talk with you—and Judy won’t serve me breakfast until I do. What’s going on?”

Randy’s eyes instantly filled with tears while sharing that this was their last breakfast out before hospice came that afternoon for his partner. Listening, I understood why Judy sent me back to the parking lot.

I speak fluent caregiver.

Randy added, “We’ve been together for 24 years, and I am just so upset. I don’t know what to do. I’m afraid I’ll go into my room and cry—and won’t be able to stop.”

Chatting for a while, as Randy’s companion quietly sat in the car with the engine running, I offered things learned from a lifetime of caregiving for my wife who lives with severe disabilities. Giving Randy my card and sharing he could call anytime, I prayed with him, hugged him, and watched him breathe a bit easier. Returning to the restaurant, Judy, with brimming eyes, nodded her thanks and served me breakfast.

Strengthening and encouraging my fellow caregivers serves as one of my deepest passions. I understand the brutality of the journey in ways few do. I also understand that the caregiving burden borne in the gay community is all too often compounded by judgment from people of faith. People who share my faith.

Caregiving respects no sexual preference, creed, politics, religion, or race. The harshness of caregiving saves all its assaults…to wage on the bonds of love. In the face of a chronic illness or disability, that love isn’t sexual or about sexual orientation. The love compelling one person to put themselves between a vulnerable loved one and even worse disaster—is something far different and worthy of respect.

Suffering and sorrow tend to put differences into perspective. The ministry of grace vividly displayed from the cross of Christ, can flow from us without this incessant need to fix, change, or dispute those who live differently.

In that parking lot, Randy and I were not gay versus straight. Nor were our doctrines and creeds discussed. While I remain devoutly evangelical with deep convictions, I never asked Randy’s beliefs. I just saw a fellow caregiver grieving as he ministered to a suffering loved one. Randy and I have that in common.

Caregivers struggle. They deserve care—not judgment for their fears, mistakes, or even their lifestyle. No one has ever argued me into a relationship. But there are those who loved me into one.

When the AIDS epidemic crashed upon society, all too many in the gay community were shunned. In the process, a vast number suffered with a horrific disease without the comfort of Christian ministry. That tragedy can’t be undone. Yet, that same community stands in need now, as they grieve while caring for aging and disabled loved ones.

Acceptance is not agreement. In order to care for someone, one is not bound to condone a lifestyle operating in contrast to Scripture. Yet, ministering hands reached into my grief and trauma to help me get to safer ground. I would be a poor steward of that help …that grace …if I didn’t offer it to others as they journey down the heartbreaking path of a caregiver.

While I’ve learned to speak fluent “caregiver,” it’s my Savior’s native tongue.”

Work through that bad mood with a walk

At Metro Fitness today I chatted with a woman who is a personal care giver; she exercises 3 hours a day, she told me. Her client is in her 90s, still smokes, and is on oxygen. I'd exercise that much, too, if I had her job.

Caring for elderly parents, guest blogger, Jacqueline Marcell, author of Elder Rage

“For eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, ‘Jacqueline, I just can't work with your father. His temper is impossible to handle and he’s not going to accept help until he's on his knees himself.’

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was heart-breaking as one minute he’d be my loving dad and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors, only to be flabbergasted when he could act completely normal when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and P.E.T. scans. After ruling out numerous reversible forms of dementia, such as a B-12 and thyroid deficiency, and evaluating their medications, I was stunned by the diagnosis of Stage One Alzheimer's in both of my parents–something all their other doctors missed entirely.

What I'd been coping with was the beginning of Alzheimer’s, which starts very intermittently and appears to come and go. I didn't understand that my father was addicted and trapped in his own engrained bad behavior of a lifetime of screaming and yelling to get his way, but that it was coming out intermittently in inconsistent spurts of irrationality. I also didn't understand that demented does not mean dumb (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer's makes up 60-80 percent of all dementias and there's no stopping the progression nor is there yet a cure. However, if identified early there are four FDA medications (Aricept, Exelon, Razadyne and Namenda–and many more in clinical trials) that in most people can mask dementia symptoms and keep the patient in the early independent stage longer.

Once my parents were properly treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s aggression, I was able to optimize fluid and nutrition with much less resistance. I was also able to manage the rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I also learned to just go-with-the-flow and let hurtful comments roll off. And most importantly, I was able to get my father to accept two wonderful live-in caregivers. Then with the tremendous benefit of adult day health care five days a week for my parents and a support group for me, everything finally started to fall into place.
Alzheimer's disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a ‘normal’ part of aging. Since one out of eight is afflicted with Alzheimer’s by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and help educate patients and families so everyone can save time, money–and a fortune in Kleenex!”

TEN WARNING SIGNS OF ALZHEIMER'S
www.ElderRage.com/Alzheimers.asp

The author is available for speaking engagements.

'Elder Rage, or Take My Father... Please!
How to Survive Caring for Aging Parents'
Book-of-the-Month Club Selection
www.ElderRage.com

There's something wrong with the math

This kind of cold calculation really sets my teeth on edge.

About 34 million caregivers provided unpaid help valued at $375 billion to family and friends last year, up from $350 billion in 2006, according to a report being released Thursday by AARP, a large advocacy group for older Americans in Washington, D.C.

The typical U.S. caregiver is a 46-year-old woman who works outside the home and spends more than 20 hours a week providing unpaid care to her mother, the report says. Those tasks include personal care and everyday tasks as well as health-related interventions such as administering medications.

Last Sunday friends picked us up for Bible study; Friday night our neighbors drove and we all went out to dinner. Are they unpaid taxi drivers? Is there a value there that someone needs to be calculating? Last week my husband raked leaves at our summer home. Yesterday I prepared birthday dinners for my children. Is he an unpaid gardener, and am I an unpaid cook? Where do I turn in my time card to the government or academic tracking this?

How many additional hours would that 46 year old need to work in order to pay someone for 20 hours to provide nothing close to the care she is giving her mother? How many hours of work to put Mom in the nursing home at $5,000 a month?

WSJ article

Caring for Aunt Ann

Michelle and I have known each other for several years, but during Advent we were both on the same communion team and chatted a bit while waiting for others to arrive. She told me about her aunt, and the frustration she was experiencing with nursing home staff. I asked her if she'd like to be my guest blogger, and she agreed. In the few months since we talked, her aunt died.

My aunt died January 4 after her last urinary tract infection led to the kidney failure, to hospital treatment, to hospice and three weeks waiting for her wish to be fulfilled - to join her family in heaven.

For the past five years, I had to be a strong advocate for her, fighting for what I consider good treatment. You need to understand, Ann was in a "good" nursing home. But she and many other patients who could not get about by themselves, were wheeled to their rooms and left there without an attempt to give them their push cords to call for assistance. Staff or volunteers would wheel a cart by and put ice and water in their pitchers. That was good, but many couldn't lift the pitcher after it was filled. I never saw anyone put any water in a cup that the resident could take by himself/herself. I asked several to do it and, while they didn't say, "That's not my job," I never saw them do it in other rooms where they were filling pitchers. Often the pitchers were on the tables and way out of reach of the residents. (Lack of water increases potential for urinary tract infections and kidney failure with change in mental status.)

When busy, staff would put Ann on the toilet where she could sit for more than a half hour at times. Ann would sit there scratching previously inaccessible areas but the staff would haul them off the toilet, wipe their bottoms, restore them to their wheelchairs and bring back out into the room. I would protest that Ann's hands needed washed, and they said "We wiped her." I explained about her scratching and showed them her fingernails and the dead skin, etc., under them. Staff would wheel her back in bathroom and help her wash. That gradually became wheeling her to the sink and leaving her there to care for someone else -- but Ann couldn't reach the faucet or handles from her wheelchair.

I discovered that oral care (tooth brushing) was asking "Do you want to brush your teeth?" (not asked nightly) at the end of the day. So longing for their beds, the elderly would say "no." Weeks would go by that no toothbrush would be used. I tested once by bringing in my own toothbrush to use on Ann and winding a couple of Ann's hairs in the tooth brush. After two weeks unchanged, I reported it to the director and head nurse.

I went on rampage after rampage in the winter when the heat was up and I would walk through the halls, stopping in various rooms where I had made friends and offering water. No one refused and no one drank less than 6 ounces of water. Most drank at least 12 ounces. When I told the facility I had offered to find a new place for Ann to live but she told me "No, I have friends here. And the other place will be the same or worse" - it got the director out of her office daily to walk the halls and survey who didn't have their call cords in their hands, offering water to patients, checking to see if water was available for those who couldn't pour. She did this for nearly two months during the heating season -- and guess what?? People were healthier when appropriately hydrated, were less listless and more interactive per my observations However, when the director stopped her daily walks, things went back to the way they were before.

Ann had numerous urinary tract infections (UTI) over the years, sometimes two or three in a row before they were conquered. She also contracted an MRSA (methacillin-resistant Staphylococcus aureus) infection and had to be moved from her nursing home to a sister facility to share a room with someone else with MRSA. This is highly contagious and challenging to treat. However, with any infection and the elderly, using a new, powerful antibiotic is very hard on their systems, often resulting in yeast infections, stomach irritation and other side effects.

Keep watch and an open ear to your loved one's condition -- seek to discover if they are feeling unwell while under antibiotic treatment. Good aides will notify the nurses. Good nurses will respond quickly to the aides comments about a change in condition (stomach upset, not wanting to eat, yeast discoloration, redness in genital area). Sorry to say, not all aides and nurses respond appropriately or quickly. If you are able and the resident is willing, ask to see the condition yourself.

During those years, as I struggled to get attention for many of the nursing home residents and did some of the things they needed done on my own. I had a phone conversation with a doctor who cared for Ann there. He told me that my expectations for what the aides could provide in care was "unrealistic." (i.e., forget keeping their teeth clean, forget them getting body lotion immediately after a shower, offering water when they entered her room to serve her). He explained that during an eight hour shift, with the number of patients an aide had, the charting, showering, serving food, assisting in needs, it was his thought that I could not expect any more than 30 minutes of care per shift by an aide for my loved one. If I were lucky, or her need was more severe than other patients, perhaps 45 minutes. I was stunned into silence with that. But I did tell him, I would not be able to accept that what he was proposing was an acceptable level of care for any of the patients. And, you can probably guess that cantankerous and challenging patients that don't offer warm fuzzies with staff have a slightly decreased opportunity for his/her "number of minutes."

Knowing the suffering that Ann had endured over 5-6 years (Ann still had her mental capacity to protect herself and demand certain care, but also hesitated to do too much in fear of making staff angry with her. Those with dementia may not always be able to seek appropriate care.

While Ann wanted to "go home to the Lord" for some 10 years before her death, Ann was so amazingly happy to "be back home" after a hospital stay, it shocked me. She rejoiced in our visits, but did acknowledge that the times in between weren't so great for her, but I would watch her interact with staff, and the staff and Ann would each tell me their versions of stories when they shared fun and happiness together. I saw that interaction as being moments of quality that she appreciated. I found this contrasting with the desire to be done with her life on earth and sometimes challenging to reconcile.

Hospice nurses have told me that pneumonia can be a gentle opportunity to escape from life. So, there is an option that can be written and added to health directives:
1) that a patient who is debilitated can ask not to be treated for pneumonia.
2) That should breathing difficulties and pneumonia symptoms appear, patient and family can request NO transfer to the hospital for treatment and implement hospice treatment (care centers or specialty hospice groups can provide that.)
3) It is my understanding that the pneumonia process gradually lessens the patient's responsiveness and she succumbs to death reasonably easily.
4) This peaceful death is with pain medication appropriate for condition.
5) Ann might have been granted release from nursing home a few years earlier had she and I implemented this plan together. It's not an easy choice, but one that deserves conversation.

Thank you, Michelle--this is better than I could have hoped for, and I'm so thankful that Ann had a loving, Christian niece to help her through difficult times. In part 2, Michelle will share her experience with a 90 year old neighbor who needed emergency care.

Stolen, Borrowed or Misrepresented Links

Have you ever visited a link that was recommended by a reliable site, or which appears in a Google search to match your topic, and then discovered that in some sort of weird way, its body has been taken over or occupied by an evil spirit or advertiser? Today I was looking through the caregivers links from Family and Consumer Sciences at Texas A & M--something I'd recommended years ago, but now had a broken link (error). So I thought I'd try to track it down. In the course of that search I saw a link to a bioethics site, so I clicked to it. It was just advertising: A Rolling Stones T-Shirt (for elderly rockers?), a blue collar "ethic" belt buckle, Wolfgang Puck hearty vegetable soup, Rabbit Air BioFresh Ultra-Quiet Air Purifier w/ Germicidal Protection, 1/4" Extra Thick Deluxe High Density Yoga Mat, and so forth. Not a very ethical way to do business, in my opinion.