Rebecca's Blogs

 


Some musings, mental notes and generally some ramblings from author Rebecca Warner.


 

ISOLATION FALLOUT FROM A to Z

 

Imagine if, for ten or more months, you could not visit with your loved one except through a window.

Wonder if each time you visited, you found your loved one mentally and physically declining in ways that are obvious to you, but ignored by facility employees.

Try to picture your loved one with dementia reaching out to you, wanting a hug, yearning for a tender touch, and crying because you won't oblige.

After six months of his mother's being in isolation, Bill Borrelle finally got to see her in September. As a member of the Facebook group Caregivers for Compromise - because Isolation kills, too, Bill appeared on that site in a video on January 16, 2021 to share a list from A to Z of the areas in which his mother's mental health and well being had been impacted according to his experience in observing his mom. Note that she is legally blind. 

Bill asked everyone to share his list, so I'm doing it here.

Anxiety
Boredom
Confusion
Dementia acceleration, despair, depression 
Eating very little
Fall due to loose shoes
Eating very little
Gastroenteritis
Hearing aids not working
Inability to remember
Jail sensation
Keeps asking why I don't come in
Loneliness
Mold in fridge
No exercise
Overgrown fingernails
Persistent phone calls
Quests to be with family
Refrigerator without favorite snacks
Sleeping all the time
Ten months not going out
Unhappy
Very little social interaction
Weight loss
X-treme fatigue after getting and surviving COVID 19
Yearning for a hug
Zero visits from grandchildren and great-grandchildren
 
 
In less than a year, the Caregivers for Compromise Facebook group has grown to over 14,000 members, the great majority of whom are committed to changing their loved ones isolation by getting permission to visit in person. After all, they're willing to follow all protocols the facility has in place, but they have repeatedly been told they cannot have in-person visits. 
 
But this group's efforts have had some astounding results. Lawmakers and Departments of Health and Human Services in some states have now recognized that, beyond being a welcome visitor, many family members are critical partners in the ongoing care and physical and emotional support of people living in nursing homes and assisted living facilities.
 
In some cases, they have designated these people as Essential Caregivers, noting that the goal of designating Essential Caregivers is to help residents who are missing care previously provided by a loved one or outside caregivers. An essential caregiver may be a family member, friend, personal private caregiver, or volunteer who was providing care before the pandemic and/or who needs to start providing care now because there has been a change in the patient’s condition and they now need care.
 
It's a great start, but there may be those who are thinking that more administrative action won't be necessary because with vaccines being administered, things will return to normal in terms of visits. But there are more impediments that mean those longed-for visits won't happen as quickly as everyone involved would like. 
 
Some comments on Caregivers for Compromise explain why that is so:
 
"Here in NC there's no telling when mom's nursing home will open up. After the vaccine is given to the patient, the whole facility, employees and residents have to be Covid free for 30 days. The county is a hotbed. What are the chances no one will get Covid for 30 days. I'm heartbroken. Our loved ones are suffering greatly." 
 
"Here on Long Island in NY, my Moms a resident in a Nursing Home and is actually due to receive her 2nd dose of the vaccine this coming week. HOWEVER, we have ALL been informed that until such date that the ENTIRE facility (BOTH residents AND staff) are 100% vaccinated, there is NO FORESEEABLE date for their lockdown to ease. That said; MANY employees as well as residents have refused the vaccine, so who knows when or if this nightmare will ever end for ALL of us. Its beyond heartbreaking, truly cruel at this point and inhumane already."
 
A number of those who have been able to do so have removed their loved ones from those places and brought them home, which can entail difficulties and adjustments for everyone. But that's not an option for many, and so the efforts to make in-person visits possible will continue. 
 
And for every day that is so, isolation will continue to kill.  
 
But I can't end this blog with that sad and scary prediction, so I'll end with this happy story of a woman who was able to take her mother out of the nursing home and bring her into her own home to live.
 
Here is what she posted about that on Caregivers for Compromise
 
On November 20 my 91 year old wheelchair bound mother left her retirement community of 20 years (assisted living the last year) to live with me in an effort to keep her safe from Covid. It has been a difficult 6 weeks- exhausting, frustrating and a million other emotions. Being isolated in temporary housing because my home is not handicapped accessible has been making me a little crazy and maybe depressed, especially over 2 holidays but having her with me is all worth it, today especially. We got out of the house and went to Starbucks! My Mother’s first Peppermint Mocha DECAF latte- she loved it! She’s so darn cute sitting there drinking her Starbucks!
 
 
 
 
 

 

Caregiving: The Importance of Good Communication Skills

 

There’s no doubt dementia diminishes the ability for effective communication between the patient and caregiver. When people can’t comprehend what is being said, or can’t find the words to express their own thoughts, it can be painful, embarrassing and frustrating.

How a caregiver sets the tone for the conversation can make all the difference between being gratified and exasperated.

  • Think about how you are presenting yourself. Are you frowning? Tense? Expecting the worst? Bossy or controlling? People with dementia are often extremely aware of nonverbal signals. In my book, My Dad My Dog, there’s a scene in the first chapter where Joe, Rachel’s Alzheimer’s-afflicted Dad, has had the “presence of mind” to answer a question posed by a resident of the care facility where he lives. Unbeknownst to him, this causes Rachel embarrassment. He looks at her, pleased that he was able to answer, but her reaction is not what he expected.

Told in the first person, this is how Rachel describes the resulting dynamic:

I brush at the non-existent lint on my pants and look over at Dad, who is smiling at me. He’s pleased he was able to answer Grady’s question. Then he looks at me, really looks at me, and his smile disappears. The corners of his mouth turn down and his eyes dull.

He’s aware of my distress. His shaky hand reaches for mine. He wouldn’t be able to describe what I’m feeling, but he senses it. He doesn’t think clearly, but he feels deeply; and at this moment, he wants to comfort his daughter.

 

  • Sometimes things can be said to an Alzheimer’s patient that cause an unexpected shift in mood, and the patient can spiral down from there. A caregiver can just be physically and mentally tired, and might say no to a request, or order him to do something, but that often brings about a bad result, most often stubbornness or resistance or a bout of “shutting down.” There are ways to overcome a possible downward spiral, including humor, cajoling, or cheerfulness. Humor or gentle teasing often helps caregivers through difficult moments. Here’s a scene from the book that describes how Rachel deals with her dad’s response to her refusal to give him a beer.

 

 

“Can I get you anything, Dad?” I call from the kitchen.

“A beer.”

“Too early in the day. Plus, it will make you have to go to the bathroom all afternoon.”

I hear him grumble, but I’m not going to put myself, or him, through the effects of a beer so early in the afternoon.

I wait to see if he says anything else, but when he doesn’t, I go back to peeling potatoes.

“Hey, Dad, remember what you told me about how I peeled potatoes?”

There’s no response, so I walk into the living room, holding a peeled potato. He won’t look at me. Is he being petulant over a beer? How aggravating. I just want to turn around and go back into the kitchen, but I don’t want his mood to descend any further.

So I cajole him. “You used to say I peeled them so much, they looked like marbles when I got through with them. Remember that?”

Still no response.

Standing directly in front of him, I show him the potato. “Now look at this one. If you hadn’t shown me how to peel a potato, we’d be having marbles for dinner.”

There’s a long pause before he responds. “I peeled enough of them in the Army.”

“And you learned to peel them perfectly. Thanks for passing that on to me.”

Mollified, he starts digging into the box of crackers again.

Being a caregiver requires learning on the job. One has to find out what works with her loved one, and build upon those skills that keep communication open.

In Part II, I cover more about approach and tone through using more excerpts from My Dad My Dog.

BECOMING AN IN-HOME CAREGIVER

"I had a talk with the administrator of my Mom’s facility today. I told her I was coming to get Mom on Friday. I’m taking her out. Taking her home. Those are some of the best words I have ever said. I just finished her bedroom today. I am so excited for Friday. My heart aches for those of you that cannot take your loved ones out. I have struggled all these months. Sleepless nights. Knot in my stomach. So many tears. I know it won’t be easy. But, I’m doing it. I’m doing it."  From a member of Caregivers For Compromise 

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A room for Mom...

Relatives of loved ones who live in long-term care facilities, such as nursing homes and assisted living facilities, are taking their parents, siblings and grandparents out of those facilities and taking on the enormous task of becoming their caregiver within their own homes.

One obvious reason is because of the high number of COVID-related deaths that have occurred in those facilities.  

As of the latest reporting on November 12, 2020, these are the number of CDC reported cases:

RESIDENT CASES AND DEATHS:

Total COVID-19 Confirmed Cases:      294,438

Total COVID-19  Suspected Cases:     156,929

Total COVID-19 Deaths                       65,446

With the projected escalation of the number of COVID-related cases and deaths throughout this next coronavirus surge, we can expect to see even more residents being taken out of nursing homes.

But there's another reason for the escalation of in-home caregiving. Many have not been able to visit in person with their loved ones for what is now almost nine months. They have only been able to visit through panes of glass. But it's not enough; not nearly enough.

Image result for image of visiting nursing home resident looking through glass

 

Not being able to hold their loved-one's hand, kiss their cheek, comb their hair and say, "I love you," in person has taken a toll on everyone's emotions, but it has also taken a huge toll on the health of those residents who have been totally isolated in their rooms for months. Many suffer from dementia and cannot understand why those in-person visits have stopped or why they can't go to the dining room or visit with the friend next door.

Progress was being made in changing this through appeals to state governors, and visiting restrictions were beginning to lift, albeit on a very restricted basis. Now, with COVID-19 cases expected to surge through these dark months of winter, we can expect more people to be bringing their loved ones home.

Perhaps the much-needed, highly anticipated vaccine can turn this entire situation around. That's the very best outcome for those who are separated from their families. And that's the outcome we should all wish for. Until then, many who have no training and no experience--those who can find any possible way to do so--will become caregivers in their homes. As we can tell from the poignant opening paragraph of this article, they understand the challenges will be great, but the rewards will be greater. 

HOW CAREGIVERS FOR PARENTS WITH DEMENTIA CAN IMPROVE COMMUNICATION

HOW CAREGIVERS FOR PARENTS WITH DEMENTIA CAN IMPROVE COMMUNICATION

Children are moving their dementia-afflicted parents out of long-term care facilities due to fears about COVID-19’s high fatality rates, and/or because they recognize that imposed isolation is accelerating their parents’ cognitive and physical decline.

In becoming the primary parental caregiver, children also become the primary communicator, which can present complications and frustrations that soon become overwhelming.

One of the most challenging aspects in dealing with loved ones’ cognitive decline is learning how better to communicate when their ability to express themselves diminishes as their dementia progresses. We have, after all, been the child who communicated with our parents in a certain way for decades. Learning to speak as the adult without offending our parents’ sensibilities can mean walking a fine line and adjusting our expectations.

The Alzheimer’s Association has some excellent advice about communication, and it’s a great resource for understanding what to expect and incorporating its recommendations into your personal situation.

My dad’s Alzheimer’s was the slow-progressing kind, so his changes in communicating came in stages and over time, unlike fast, severe dementia which removes the ability to speak at all. In Dad’s case, the changes had a tendency to surprise me when I realized, for instance, that he was losing his train of thought much more often. Or that he took longer to respond because he was trying to organize his words logically. A later-stage change for Dad was trouble in finding words. Instead, he might use familiar words to replace lost words, so that a word such as “skillet” became “plate.”

But over time, with research, advice and practice, I found ways to facilitate communicating with Dad. 

Dad stayed better focused when I looked like I was really listening: I’ve always been a good listener, so I didn’t have to pretend; but I admit it was difficult at times to stay focused. When that happened, I looked directly into his pretty blue eyes to let him know I was interested, no matter how long it took him to say what he wished to say.

I also learned to focus on feelings when the words weren’t there. When Dad couldn’t verbally express himself, I focused on feelings conveyed through his body language. I entered his apartment one day and, seeing he was napping, changed the channel on his TV. He sort of grunted, and when I looked at him, I saw his eyes were still closed but his jaw was set and his teeth were clenched. He was irritated, but he either couldn’t summon the words to tell me that, or he didn’t want to offend me. I hit the “previous” button on the remote and his show came back on. His features completely relaxed as his irritation dissipated.  

Using his name when addressing him is something I asked everyone, including the caregivers in his assisted living facility, to do. Not sweetie or honey, but Joe. I often used “Dad” to begin or end a sentence. Being addressed directly by Dad or Joe helped him maintain attention and orientation.

Treating him with respect was easy enough to do, because I respected him greatly. But at times I had to resist the temptation to talk down to him when he was being what I thought was petulant or obtuse. I had to remind myself his behavior was due to his dementia. Since many individuals with Alzheimer’s feel that the illness has robbed them of their adult status, talking down to them or talking about them as if they aren’t there diminishes their already-eroded sense of self-respect. I learned to overcome that impulse, but it was much harder to get others to do the same. Busy doctors, for instance, just wanted to speed things up by talking to me directly about “him.” I respected their time, but including Dad in the conversations as much as possible gave him confidence that he was still being seen as an independent adult.

It’s difficult to get out of the habit of asking questions such as, “Do you need to go to the bathroom?” It may seem like a simple question that should yield a simple answer, but for someone in a wheelchair or who has problems ambulating, going to the bathroom is a chore. There might be hesitation in responding. By saying instead, “Let’s get you to the bathroom before dinner,” the decision was made for him.

In that same vein, asking more than one question in the same sentence—in effect giving him choices—caused confusion. “Dad, do you want to have lunch here or at a restaurant or take a ride on the Parkway first?” didn’t work nearly as well as saying in a calm, relaxed tone, “Let’s go get a hamburger before we take a ride on the Parkway.” I learned to choose my action verbs more carefully, too. Phrasing as simple as, “Let’s hop in the van,” might be taken literally—he might think he had to hop to get into his handicapped van. From where he sat in his wheelchair, that wasn’t possible for him to accomplish, and it could bring on anxiety.

These are techniques that worked really well for me and my dad, but there are others you might find work better for you. Mayo Clinic provides even more suggestions for effective communication.

Patience, biting your tongue, searching for and practicing better ways to get through to your parents, and accepting and adjusting to their ever-changing way of speaking can be frustrating. But doing the work and getting positive results, no matter how small, can make your efforts immensely rewarding. By using these techniques, I kept in touch with Dad longer than I thought possible.

There were times we both became agitated and weary, but neither of us stopped trying. And the words, “I love you,” so often conveyed all we really wanted and needed to say when other words failed us.

 

Caregiving Comes at a Cost: Should Family Members Be Compensated for Caregiving?

Caregiving Comes at a Cost: Should Family Members Be Compensated for Caregiving?