Caregiver guilt (excerpts from a book on caregiving)

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This short article on caregiver guilt is an excerpt from the book Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving (stayafloatbook.com).  The author is Gary Joseph LeBlanc.  The article is from a recent issue of Preserving Your Memory magazine.

This excerpt summarizes the article:

“Try not to berate yourself about areas in which you think you may have failed. Instead, focus on all the positive things you accomplished along the way. Think of the enhanced quality of life you single-handedly brought to your loved one. Remember, you will remain in their heart forever.”

The full article is copied below.

Robin

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www.alzinfo.org/wp-content/uploads/2011/08/PYM_Summer11.pdf

Caregiver Voices
Coping with Caregiver Guilt
Preserving Your Memory
By Gary Joseph LeBlanc
Summer 2011

Guilt is an overpowering and complicated emotion but appears to have a purpose in the life of human beings. When knowing we’ve done something wrong, by all means, we should experience a touch of shame.

If you are a caregiver there will be times when waves of guilt will wash right over you. There doesn’t have to be any wrongdoing to cause this. The simple reason is that you care so deeply that you never feel adequate performing this role.

For example, you may finally get a chance to do something for yourself. Let’s say you go out to get an overdue haircut. The whole time you’re sitting in the salon chair you can’t stop thinking about something bad happening while you are away. You rush straight home, instead of taking advantage of the rare and well-deserved respite break. Even when you find, to your relief, that all is well, you still experience that guilt monster.

Then there’s always that “little white lie.” You may be visiting your loved one at his or her adult living facility or the hospital. You need to be at work in a couple of hours, but you like to have at least one hour to yourself before you begin your shift. Suddenly you find yourself saying, “My boss asked if I could come in early today so I’m going to have to leave now.” Meanwhile, throughout your whole work shift, you once again feel guilt doing somersaults in your stomach.

There’s not a caregiver out there that doesn’t worry about whether or not the job he or she is doing is good enough. Even after your loved one has passed you will go through a stage of beating yourself up, wondering whether or not there was something more you could have done for your loved one.

The strong emotion of guilt that caregivers endure is just part of human nature. Go to a caregiver’s support group and ask all those surrounding you. They will tell you that they are experiencing or have experienced the exact same feelings. All caregivers face the same unattainable goal of sparing their loved ones the pain that comes with any disease. Everyone’s desire is to provide a compassionate passing.

Deep inside, we all believe that we, as caregivers, are to some degree responsible for what happens to our stricken loved ones in the end. Sadly, some endings can be downright cruel, not only to the one afflicted with the disease but also to the ones that have to witness the perishing.

Caregivers get hit with a double-whammy. While trying to wade through all the sadness and grievance, they get swept away by a pronounced tide of guilt. But take heart; this guilt trip will slowly start to fade, finally leaving you with just the normal amount of grief, which is bad enough.

With the passing of your loved one, life has just spun around 180 degrees. Everything you have trained yourself to do has come to a complete halt. That grueling fast pace lifestyle you lived has just stopped itself on a dime. It’s almost as if you have to learn to breathe all over again.

Try not to berate yourself about areas in which you think you may have failed. Instead, focus on all the positive things you accomplished along the way. Think of the enhanced quality of life you single-handedly brought to your loved one. Remember, you will remain in their heart forever.

Unfortunately, guilt is a normal emotion in life. These bouts of guilt you feel only prove what a caring individual you truly are.

[This is] an excerpt from Gary Joseph LeBlanc’s book, “Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving,” which is now available in an expanded edition. You can order the book at stayingafloatbook.com

“Web-Savvy Caregiving: Using the Internet to Care, Connect, and Cope”

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Today, a local support group member forwarded me this magazine article on web-savvy caregiving.  The article is written by the co-author of The Web-Savvy Patient: An Insider’’s Guide to Navigating the Internet When Facing Medical Crisis (websavvypatient.com).  The article was published in the magazine Preserving Your Memory, found in some doctor’s offices.  Though the magazine’s publisher is the Fisher Center for Alzheimer’s Research Foundation, the article will be of interest to more than Alzheimer’s caregivers.

The full article is copied below.

Robin

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www.alzinfo.org/wp-content/uploads/2011/08/PYM_Summer11.pdf
(article starts on page 10)

Web-Savvy Caregiving
Using the Internet to Care, Connect and Cope
Preserving Your Memory
By Mary Adam Thomas
Summer 2011

Individuals and families coping with Alzheimer’s disease (AD) and other forms of memory loss have a lot of questions. What’’s happening to my loved one? What can I expect in the coming months and years? How can I meet my caregiving responsibilities while also taking care of myself? Does anybody out there have any idea what I’’m going through?

The answers, according to one expert, are right at your fingertips.

“Going online is such a great way to find what you need because you don’t often have the time or availability to go out looking for help when you’re providing care to someone in the home,” says Andrew Schorr, a noted patient advocate and author of “The Web-Savvy Patient: An Insider’’s Guide to Navigating the Internet When Facing Medical Crisis.” Rather than allowing yourself and your loved one to become isolated, Schorr recommends using the Web to find what you need for all aspects of caregiving.

“You’’re not the first family dealing with Alzheimer’s. None of this is new; it’’s just new for you,” Schorr explains. “So why not draw from the wisdom that’’s out there?”

But the Internet can feel overwhelming, particularly to newer computer users and to those who haven’t ever conducted online research. What are the best ways to wade through the seemingly endless number of Web pages to find what you need? And how can you distinguish helpful from potentially harmful content?

Mr. Schorr offers the following “Insider’’s Tips” to AD caregivers who are interested in becoming Web-savvy:

• Insider’s Tip #1: Define the condition.

““Watching a loved one suffer from memory loss is like having a ton of bricks fall on a family over a long period of time,”” says Schorr. “But you don’’t have to take it lying down. Knowing how much support is out there on the Web helps people pick themselves up off the floor and deal with it.” The first step, he insists, is identifying the problem before you kick off an online research project. This is especially true with memory loss, which can take many forms, each manifesting itself in slightly different ways. Make sure you have a clearly defined diagnosis from your loved one’s doctor before you begin searching for information online about it. Alzheimer’’s disease, mild cognitive impairment and brain trauma are distinct diagnoses and typically call for slightly different treatment and caregiving approaches. Before you turn to the Web, tailor your search to the precise health issue you and your loved one are facing. “Deal with the medical stuff first, then begin hunting for support networks for the patient and the family,”” says Schorr. “It’’s all there. You just have to learn how to find it so that everyone involved can continue to experience the joy of living.”

• Insider’s Tip #2: Connect with other caregivers.

““These days, there is absolutely no reason to feel alone. The online connection can be a real salvation to caregivers,”” says Schorr. Using the Web to find others who are in your shoes can be one of the greatest gifts you give yourself as a caregiver. Since opportunities to attend in-person support groups are more limited to those caring for AD sufferers, you can interact virtually with people as a way of participating in a community of like-minded people. Exchange coping strategies, share anecdotes, do a little venting. The point is to communicate with people who understand what you’’re going through. You can even continue conversations online with people you’’ve met in person at doctor’s’ offices or in support groups as a way of keeping discussions going. Ask your doctor, nurse or social worker for the Web addresses of local and/or national caregiving groups that you might explore. “”Many of us have to shift our perceptions of what makes a conversation,”” advises Schorr. “Conversations that happen online through email, social
networking sites and website chat rooms are still conversations. And it’’s that sense of community that really matters.”

• Insider’s Tip #3: Keep family and friends in the loop.

The Internet offers numerous ways for caregivers to communicate with the people they care about —not just to stay in touch but also to ask for support. Email, instant messaging, Facebook, Skype, Twitter and other tools allow caregivers to interact with others and stave off the threat of isolation. Use these easy, often free channels for casual as well as more official purposes. Write informal notes to grandchildren, exchange newsy letters with friends, and summarize the latest medical reports for extended family. Equally important, says Schorr, is using the Web as a way to manage the help of others. “It can be debilitating for caregivers to do it all on their own,” he notes. “So don’’t be shy about using some of these tools to delegate a portion of your caregiving duties to the folks who want to pitch in.” You can marshal the efforts of all those good people who want to bring meals, help with errands and give you a couple of hours away from the house.

• Insider’s Tip #4: Get to your computer regularly.

The best way to ensure that you get what you need from the Internet is to return to it as often as possible. “Carve out time for it. “Add it to the list of things you ask for help with; have someone else sit with your loved one so you can focus,”” says Schorr. “Maintaining those connections and staying engaged with the world beyond your four walls will benefit you and the person you’’re taking care of,” he adds. This is especially true if you are researching your loved one’’s condition, since online content is ever-changing and you may make new discoveries each time you return. However, Schorr cautions to establish boundaries when it comes to interacting with online communities. “Don’t get sucked into more than you can bear,” he warns. “Devote a certain amount of time to connecting and chatting with others—even if it’s just in ten-minute blocks —but honor that limit if it gets to be too much.” (If anything or anyone makes you uncomfortable, or if your online activities begin to interfere with your caregiving responsibilities, then it’’s time to re-evaluate your approach.) The Web can and should be a source of comfort and connectivity that helps recharge your caregiving batteries.

• Insider’s Tip #5: Share your story.

“The Internet is a two-way street,” reminds Schorr. “Don’’t just use it to learn from others; use it so others can learn from you.” Along your journey as a caregiver, you will make many discoveries. You find it helpful to hear about coping strategies that have proven successful for other families caring for AD patients, so why not do the same for individuals just starting down a path that’’s similar to yours? “You’’re learning as you go and you have so much to share. “It can be extremely rewarding to offer your new-found wisdom to fellow caregivers,”” says Schorr.

• Insider’s Tip #6: Protect your privacy.

Use common sense while establishing accounts and communicating with others online. Think twice before using your full name (or that of your loved one) and identifying your hometown when visiting public Web spaces. You always have the option of using an alias or a nickname for any moniker that is visible to others. But don’’t let your desire for anonymity prevent you from diving into whatever resources you can find. In The Web-Savvy Patient, Schorr writes, “”There are plenty of ways to find what you need without divulging your identify or your personal information unless you want to do so. Remember that everyone who explores the Internet in search of answers and support is in the exact same position as you and shares your interest in privacy.”” Final note: Do not ever give out credit card information or social security numbers to a non-verified source. Caring for someone with memory issues is a job characterized by uncertainty, variability and occasional loneliness. According to Andrew Schorr, that makes it a lot like life. “Sometimes it’s easy for caregivers to see a black cloud rather than the breaks in the cloud—those rays of sunshine and hope,” he acknowledges. “But the Internet offers a huge community of people who have been there and felt all those things. There are real people out there— — doctors, nurses, social workers and caregivers just like you— who want to help for free simply because they’’ve been through it. They know they can help you avoid some of that pain so that you can get to a more positive place.” Then, Schorr says, the Web-savvy caregiver can turn around and give the same gift to others.

Mary Adam Thomas, a frequent contributor to Preserving Your Memory, is the collaborative author of Andrew Schorr’’s “The Web Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis. More information and excerpts from the book are available at www.WebSavvyPatient.com

“Let Go” (poem)

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Someone on one of the online Lewy Body Dementia support groups shared
this poem. The poem’s author is unknown. The poem is included in
Jolene Brackey’s lovely book Creating Moments of Joy. It describes
the healthy choice of letting go for the right reasons. Perhaps this
will resonate with many of you.

Robin

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Let Go

To let go does not mean to stop caring;
It means I can’t do it for someone else.
To let go is not to cut myself off;
It’s the realization that I can’t control another.
To let go is to admit powerlessness,
Which means the outcome is not in my hands.
To let go is not to try to change or blame another;
It’s to make the most of myself.
To let go is not to “care for,” but to “care about.”
To let go is not to judge,
But to allow another to be a human being.
To let go is not to deny, but to accept.
To let go is not to nag, scold, or argue,
But instead to search out my own shortcomings and correct them.
To let go is not to regret the past,
but to grow and live for the future.
To let go is to fear less and love more.

2 main types of PSP have different FDG-PET scan findings

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There is a special type of PET scan — fluorodeoxyglucose PET (FDG-PET) — that tests for glucose metabolism in the brain.  Such scans are only available at large medical research institutions, such as UCSF or Stanford.  There have been FDG-PET studies in the past comparing progressive supranuclear palsy (PSP) and Parkinson’s Disease patients.

This German study takes the research a step further and looks at two different types of PSP.  In this study, 11 patients with the Richardson’s syndrome (RS) form of PSP, 8 patients with the parkinsonism form of PSP (PSP-P), 12 patients with Parkinson’s Disease, and 10 controls underwent an FDG-PET.  They found that different areas in the brain were affected in each of the PSP patient groups — thalamus and frontal lobe for RS and putamen for PSP-P.

For those who may be new to our PSP support group, let me briefly give the primary symptoms of these two most common types of PSP:

* RS, or “classic PSP”:  early onset of postural instability and falls, supranuclear vertical gaze palsy and cognitive dysfunction

* PSP-P:  asymmetric onset, tremor, a moderate initial therapeutic response to levodopa, and frequently confused with Parkinson’s disease

If you’d like to read more about the two most common types of PSP, see this post from 2005:

www.brainsupportnetwork.org/two-distinct-types-of-psp-rs-and-psp-parkinsonism/

Using this German study, we can correlate some of these primary symptoms of the two types of PSP with the FDG-PET findings:

* Reduced neurotransmitter activity levels in the thalamus are associated with falls and postural instability, and those with RS have a high frequency of falls.

* Reduced activity in the frontal lobe is associated with cognitive dysfunction, which occurs in those with RS.  (RS patients “have an increased risk for dementia.”)

* And the putamen is associated with parkinsonism symptoms, such as those seen in PSP-P.  Frontal metabolism was normal for PSP-P patients.

The authors state that the “putamen/thalamus ratio may be a useful parameter in clinical differential diagnosis of these PSP subgroups.”  This is potentially helpful for distinguishing PSP-P from PD (Parkinson’s Disease) because these two diseases are hard to differentiate in the early stages.

Limitations of this study are the small sample size and the lack of pathological confirmation of the diagnoses.  I’ve copied the abstract below.

Robin

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Movement Disorders. 2012 Jan;27(1):151-5.

Fluorodeoxyglucose positron emission tomography in Richardson’s syndrome and progressive supranuclear palsy-parkinsonism.

Srulijes K, Reimold M, Liscic RM, Bauer S, Dietzel E, Liepelt-Scarfone I, Berg D, Maetzler W.
Department of Neurodegeneration, Hertie Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany.

Abstract
BACKGROUND:
We hypothesized that postural instability and cognitive decline in patients with Richardson’s syndrome could be a consequence of reduced thalamic and frontal metabolism. Severe Parkinsonian signs in patients with progressive supranuclear palsy-parkinsonism may be reflected by alterations in putaminal metabolism.

METHODS:
Eleven patients with Richardson’s syndrome, 8 patients with progressive supranuclear palsy-parkinsonism, 12 with Parkinson’s disease, and 10 controls underwent clinical assessment and fluorodeoxyglucose positron emission tomography (PET).

RESULTS:
Richardson’s syndrome patients showed pronounced thalamic hypometabolism, and patients with progressive supranuclear palsy-parkinsonism pronounced putaminal hypometabolism, compared to all other investigated groups. The putamen/thalamus uptake ratio differentiated progressive supranuclear palsy-parkinsonism from Richardson’s syndrome (area under the curve 5 0.86) and from Parkinson’s disease (area under the curve 5 0.80) with acceptable accuracy. Frontal hypometabolism was predominantly found in Richardson’s syndrome patients.

CONCLUSIONS:
Richardson’s syndrome, progressive supranuclear palsy-parkinsonism and Parkinson’s disease showed different metabolic patterns in fluorodeoxyglucose PET.

PubMed ID#:  #22359740  (see https://www.ncbi.nlm.nih.gov/pubmed/?term=22359740 for this abstract only)

Review of davunetide in the treatment of PSP

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This review article was written by researchers at Allon Therapeutics (manufacturers of the experimental medication davunetide, which is currently in clinical trials around the world) and some of the world’s top progressive supranuclear palsy (PSP) experts.

The theory behind davunetide, animal research, and clinical research (in humans with amnestic mild cognitive impairment) were reviewed in a webinar for laypeople held last year (2-8-11).  See my notes on the webinar here:

https://www.brainsupportnetwork.org/davunetide-research-update-webinar-2-8-2011/

One of the co-authors of this paper was the Allon Therapeutics presenter of the webinar, Dr. Bruce Morimoto.

There were two new bits of info for me in the review of davunetide animal and human research:

* davunetide has also been tested in alpha-synuclein models, so it may have relevance to Parkinson’s Disease, Multiple System Atrophy, and Dementia with Lewy Bodies

* davunetide has also been tested in an exploratory trial in cognitive impairment in schizophrenia.

The review article’s section on “Challenges and opportunities for clinical trials in PSP” was fascinating.  Some aspects of this section were reviewed by Dr. Adam Boxer from UCSF at a conference in LA last year for PSP families.  He explained why pharmaceutical companies are inclined to conduct research with PSP patients rather than Alzheimer’s patients.  The info provided in the article takes all of what Dr. Boxer said a step further.  The authors explain why the davunetide trial going on now in PSP limited the patients to those with the classic form of PSP, called Richardson’s syndrome.

The authors referred to German research which indicates that although both PSP “patients and relatives frequently seek medical treatment, their willingness to participate in clinical trials has been surprisingly low historically.”  Indeed, I only know of one caregiver group member whose wife participated in the lithium trial, only one caregiver group member whose father participated in the transcranial magnetic simulation study, and very few group members who have participated in the NIH-funded study of genetic and environmental causes of PSP.  Unfortunately, participating in these trials has not been easy.  On the other hand, probably half of our caregiver group members donate their family member’s brain upon death, which is certainly one vital means of enabling PSP research.

By the end of 2012, we should see a paper on the davunetide clinical trial and the Nypta clinical trial.  These are exciting times for the PSP community.

I’ve copied the abstract of the review article below.

Robin

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Neuropsychiatric Disease & Treatment. 2012;8:85-93. Epub 2012 Feb 9.

Critical appraisal of the role of davunetide in the treatment of progressive supranuclear palsy.

Gold M, Lorenzl S, Stewart AJ, Morimoto BH, Williams DR, Gozes I.
Allon Therapeutics Inc, Vancouver, BC, Canada.

Abstract
Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease characterized by the accumulation of tau protein aggregates in the basal ganglia, brainstem and cerebral cortex leading to rapid disease progression and death. The neurofibrillary tangles that define the neuropathology of PSP are comprised of aggregated 4R tau and show a well-defined distribution.

Classically, PSP is diagnosed by symptoms that include progressive gait disturbance, early falls, vertical ophthalmoparesis, akinetic-rigid features, prominent bulbar dysfunction and fronto-subcortical dementia.

There are currently no effective therapies for the treatment of this rapidly degenerating and debilitating disease. Davunetide is a novel neuroprotective peptide that is thought to impact neuronal integrity and cell survival through the stabilization of microtubules. Preclinical activity in models of tauopathy has been translated to clinical studies, demonstrating pharmacologic activity that has supported further development. Davunetide’s efficacy and tolerability are being tested in a placebo-controlled study in PSP patients, making it the most advanced drug candidate in this indication.

This review examines the disease characteristics of PSP, the rationale for treating PSP with davunetide and assesses some of the challenges of clinical trials in this patient population.

PubMed ID#:  22347799  (see pubmed.gov for this abstract only)