'til Death or Dementia Do Us Part
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Ritalin ER (methylphenidate), 27 mg. AD/HD.
Namenda (memantine), 10 mg. Alzheimer’s, though sometimes used for other dementias.
Risperdal (risperidone), 0.5 mg. Anti-psychotic.
Flomax (tamsulosin), 0.4 mg. For ease of urination in men with enlarged prostate.
2011
Behaviors/Events:
Less able/willing to shave or cut fingernails.
Unsociable at The Guiding Star facility dining room.
Lashes out at caregivers.
Intermittently incontinent.
Intermittent bouts of diarrhea.
Regularly tries to “escape” from The Guiding Star.
Plays the piano less often and less well.
Other than, “Let’s go,” when I visit, his capacity for self-expression is quite limited. Gives short, often inaccurate, answers to questions.
Often yells, “Fuck you!” at caregivers and fellow residents.
Prescription Drugs:
Depakote (divalproex sodium), 500 mg. For agitation and aggression. An anticonvulsant and mood stabilizer. It suppresses the spread of abnormal electrical discharges, relieving the symptoms of disorders such as epilepsy, bipolar disorder, and migraine headaches. Side effects may include drowsiness, diarrhea, nausea and/or vomiting, fatigue/weakness, tremor, headache, asthenia, indigestion, stomach cramps, slurred speech, insomnia, nervousness, respiratory infection, blurred vision, flu syndrome, liver irritation, pancreas problems, weight gain, ringing or buzzing of the ears, hallucinations/psychosis, sedation, tremor, dizziness, abdominal pain, rash, hair loss.
Lipitor (atorvastin), 80 mg. (started 4/08/08). Drug class of statins. Cholesterol-lowering drug.
Namenda (memantine), 10 mg. Alzheimer’s, though sometimes used for other dementias.
Trazodone, 50 mg. Antidepressant.
Zyprexa (olanzapine), 2.5 mg. An atypical antipsychotic. Approved for treatment of schizophrenia and bipolar disorder.
2012
Behaviors/Events:
Often needs help getting dressed.
Bouts of diarrhea are more frequent. Lab tests, blood panel, and stool samples show no apparent cause.
Needs more help with showers and shaving.
Increased blankness in affect.
Mostly one- or two-word answers to direct questions with random accuracy.
Increasingly agitated and violent at The Guiding Star.
Arrested early February for violent, out-of-control behavior.
Moved to Sister Sarah’s.
Constantly walking a loop around and through the house at Sister Sarah’s.
Totally incontinent.
Persistent twitching of Mike’s right wrist when walking or standing.
Sang cuts drug intake to include just one anti-anxiety drug, Seroquel (quetiapine fumarate).
Lashes out at residents who get in his way.
Takes food from other residents.
Often removes shirt and shoes.
Eats constantly and voraciously.
Steady weight loss.
Occasionally walks bent and crooked, leaning to his right at an extreme angle.
*Prescription Drugs:
Lipitor (atorvastatin), 80 mg. Statin. Cholesterol-lowering drug.
Celexa, (citalopram), 20 mg. Anxiety and agitation.
Depakote (divalproex sodium), 500 mg. Agitation and aggression.
HCA Aspirin, 81 mg. Heart health.
Zyprexa (olanzapine), 5 mg., severe dementia agitation and aggression
Miralax (polyethylene glycol 3350, 71 gr. Anti-diarrhea.
Seroquel (quetiapine fumarate), 300 mg. Atypical antipsychotic, approved for schizophrenia, bipolar disorder.
Trazodone, 50 mg. Stated use now for agitation and insomnia. Previously prescribed for depression.
*By the end of 2012, Sang had weaned Mike off all drugs except for Seroquel.
2013
Behaviors/Events:
Mike receives Medi-Cal approval as a potential Assisted Living Waiver resident.
In September, Sister Sarah’s gives a 30-day notice of eviction. Motivation is unclear.
Move to Green Hill Care Home, another six-bed residential facility.
Weight now down from 190 pounds when he entered Sister Sarah’s to 160 pounds on entry to Green Hill.
Near miss for move to Assisted Living Waiver facility.
Cutting fingernails and toenails is an extremely difficult three-person job.
Continued “looping,” but with more limited outdoor space.
A series of Green Hill caregivers quit because of Mike’s violent behavior.
Broken teeth, abscessed gum.
Complicated and largely unsatisfactory dental care.
Continued voracious eating. Continued, consistent weight loss.
Only speech is in one-word answers to simple, direct questions.
No longer initiates any speech, even “hello,” or “hi.”
Prescription Drugs:
Seroquel (quetiapine fumarate), 300 mg. Atypical antipsychotic, approved for schizophrenia, bipolar disorder
2014
Behaviors/Events:
As a result of Mike’s ongoing weight loss and a “failure to thrive,” Mike qualifies for hospice care, which offers invaluable support, both emotionally and in practical matters.
Often seems not to recognize family visitors.
Continued lashing out. Other residents fearful of Mike. Their family members are concerned.
Mike’s ravenous appetite results in attempts to consume inedible items such as puzzle pieces, the foam from a resident’s safety helmet, etc.
On a visit to Mike on a hot July day, I discover that he is locked outside.
After a 90-day evaluation, Mike is dropped from hospice care.
Elena and Livia seem more and more stressed over the difficulties of caring for Mike. I fear another 30-day eviction notice.
Early September. Mike falls, hits his head on the floor, gets up and continues walking.
His head is bleeding. Livia is unable to get a close enough look to assess the extent of the injury. Calls 911. Mike is taken to the emergency hospital. Turns out to be a minor injury.
Mike again qualifies for hospice care. The hospice social worker helps renew the search for a Medi-Cal facility. One after another, local facilities turn down our applications because of Mike’s behavior until, finally, he is accepted by the Oak Tree Post-Acute Care Center in Sacramento.
Move to Oak Tree on December 9.
December 19, 9 p.m. The night nurse calls to say that Mike has started breathing heavily. I am at his bedside by 9:30. A little after 11, Mike breathes his last. Finally released from the bonds of frontotemporal dementia.
Prescription Drugs:
Until December, no drugs except for occasional use of Valium for dental examinations.
December 9, entry to Oak Tree. Mike received something for sedation, anxiety, agitation, though I’m unsure of the specific drugs.
WHERE TO FIND HELP
Below is just a scattering of possibilities for help and support for people who are, in one way or another, dealing with FTD, or other forms of dementia. In general, if you can connect with a local social worker or RN, they can save you a lot of time in your search for help. Your medical provider can steer you to other areas of help.
The Association for Frontotemporal Degeneration (AFTD), www.theaftd.org
This website offers a wealth of information, including how to find support groups, managing health care and legal and financial planning, etc., etc. It also offers ways to get involved in the organization, reports on research, related news reports, and more. I highly recommend The Doctor Thinks It’s FTD. Now What? A Guide for Managing a New Diagnosis. It can be found under the “Life with FTD” tab. It offers much needed information and guidance. Published in 2013, it’s exactly what I and others who loved Mike needed in
2009.
Alzheimer’s Association, www.alz.org
As with AFTD, this organization offers help on all aspects of dealing with dementia. Although Alzheimer’s and FTD differ in the way the diseases attack the brain, symptoms often overlap. In some areas, Alzheimer’s support groups are more prolific than are FTD support groups. Any dementia support group, whether or not it’s labeled FTD, can be helpful.
Hospice Care Services
Hospice agencies vary from area to area. Your doctor or medical group will be able to refer you to an appropriate service. Even if the person you’re caring for seems not to fit hospice criteria, it’s worth discussing such possibilities with your medical provider. I was surprised when Mike qualified for hospice care, but once set up, hospice significantly eased our way.
Based on previous experiences as a hospice nurse, Marg had a strong preference for a nonprofit service. Our first hospice experience with Mike was with a nonprofit. They were extremely supportive in practical matters, securing a hospital bed, providing twice-weekly LVN visits that helped with matters of hygiene and general care, and keeping check on Mike physically. They also offered invaluable emotional support. On the second and final round with hospice, we had a for-profit service. Their services were equally caring and competent.
In-Home Care
Again these services vary from area to area. Both the AFTD and Alzheimer’s Association can offer basic guidelines. Depending on where you live, financial aid for in home care may be available through the Health and Human Services agency that serves your state.
Community Senior Centers
Tax assistance, legal hotlines, adult day care programs, these centers usually offer referrals to a host of free or low cost, trustworthy community resources.
Del Oro Caregiver Resource Center, www.deloro.org.
This is a nonprofit organization that provides a variety of no-cost services to residents of 13 Northern California counties. Their services include counseling, respite care, legal/financial consultations, and education and training related to caregiving. Their help was invaluable to me both emotionally and in practical matters of negotiating the bankruptcy maze.
Private Referral Services for Residential Care
Senior Care Solutions, www.seniorcs.com
Carol Kinsel of Senior Care Solutions was a great help and support throughout the nearly six years of this most difficult journey with my FTD-afflicted husband. Senior Care generally serves the greater Sacramento area, but they are also knowledgeable about similar services in other areas.
Senior Care Solutions offers monthly talks/discussions with experts on various aspects of caregiving, i.e., veteran’s benefits, caring as a family, dealing with grief, etc. Each of these meetings that I’ve attended has been excellent.
The Internet offers listings for senior placement services in the greater United States. My experience has been that word-of-mouth referrals are most helpful in finding trustworthy services, but sometimes the Internet provides a good start.
For medical diagnoses
UCSF Department of Neurology, Memory and Aging Center, memory.ucsf.edu
Mayo Clinic Department of Neurology, www.mayoclinic.org/departments-centers/neurology/home/
Specifically for frontotemporal dementia, www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/basics/definition/con-20023876
Most teaching hospitals have departments of neurology. You can find teaching hospitals in your state at: www.ushospital.info/teaching.htm
For the sake of science
You can get information on clinical trials at:
www.google.com/search?client=safari&rls=en&q=clinical+trials+for+frontotemporal+dementia&ie=UTF-8&oe=UTF-8
Brain donation, specifically FTD:
www.theaftd.org/life-with-ftd/participate-in-research/brain-donation
Brain donation, general information:
neurobiobank.nih.gov/pages/donor/
For the sake of your own sanity
According to some sources, 60 percent of caregivers die before those they’re caring for do. One study claims that caregiving extends the life expectancy of the caregiver. I seriously doubt that, but the 60 percent figure also seems high. What is known for certain, though, is that caregivers are more prone to depression. Their immune systems are compromised. They tend to neglect their own health needs. Exercise habits fall by the wayside. Needs for personal time go unmet. How to balance the needs of the declining person you love with your own needs? There are no easy answers to that one, and what’s helpful to one won’t be to another. But here are a few things that I, or others, found to ease our way.
Friends and family! Independent to a fault, I found it difficult asking for and accepting help. But I got over that. Many of our circle truly wanted to help. And I truly needed help. The lunches, movies, and various outings with Mike that others provided gave me some much-needed breathing space. A chance to read, to write, to dawdle at the computer, to meet a friend for coffee, such times offered nourishing renewal for my depleted spirit.
These folks can also offer important reality checks. Although looking back on my husband’s decline it doesn’t seem that it was gradual. I adapted to his changes without always consciously registering them. It was the “frog in the soup pot” syndrome. Someone who knows you both but doesn’t see your ward on a daily basis can more clearly see the extent of the changes he or she is exhibiting. Such an outside observer can help you avoid getting to the boiling point.
Support groups for dementia caregivers and other community resources. Both the national Association for Frontotemporal Degeneration (theaftd.org) and the Alzheimer’s Association (alz.org) list support group resources available per region.
Churches, assisted living facilities, medical centers and senior centers also often offer support for caregivers.
Communication. It is easy to become so enmeshed in the demands of caregiving that you lose touch with the outside world. Early on Mike took on toddler behavior and demanded attention whenever I was engaged in telephone conversations. For me at that time, email became my lifeline.
Mike had a wide circle of concerned friends, all wanting to know how he was doing. At first I tried to let all interested parties know by email but soon found that to be problematic. I might forget to include someone in a group email. Or I might say more in a group email than some would want to know. Shortly after his diagnosis, I started a “Friends of Mike’s” blog, in which I posted updates every week or two. The last year or two of Mike’s life, blog entries became less frequent, but the blog was, I know, helpful to some readers—maybe even more helpful to this writer.
Professional therapy or counseling. During the most difficult years, every two weeks or so, I met with the psychiatrist who had previously worked with Mike. It was helpful to talk with an “outsider” who had close-up knowledge of Mike and his condition, but who was not emotionally entangled. Our conversations often enabled me to think more deeply about the situation that I, and Mike, were in. I still see this doctor, though since Mike’s death my visits are less frequent.
Exercise! Before caring for Mike became too confining, I’d consistently participated in a “sculpt and stretch” class at a local gym, and had also walk/jogged (mostly walked) on the gym treadmill three times a week. Out of necessity, I walked the dog three to four times a day, but these walks hardly qualified as exercise. When I moved Mike to a “facility,” I again had more opportunity to exercise. By that time I could no longer afford gym membership, but more lengthy, vigorous walks helped. Both mood and energy level greatly improved with exercise.
Something that feeds your soul. For me that was friends and family, reading, working on writing projects, and working with at-risk teen readers/writers. During the time that Mike was needing major attention, I occasionally worked with local incarcerated youth in a writing program. I also managed time for a few author visits to high schools. I worked sporadically on a collection of personal essays. Over
70 and I Don’t Mean MPH: Reflections on the Gift of Longevity (2012) was a mostly lighthearted look at the joys and challenges of aging. I’d originally thought the 70+ book would include stories of Mike’s dementia, and of my taking care of him, but the balance was off, hence the book you are now reading. During most of this time I managed to participate in a weekly writing group—another opportunity for much-needed renewal.
For my whole life, at least since the first Nancy Drew mystery I read sometime around the age of 7 or 8, reading has been a source of entertainment, a connection to the wider world, intellectual and spiritual growth, and, sometimes, healing. From about 2007, maybe 2008, most of my reading time was when Mike was sleeping. I had one of those tiny booklights and, if I turned away from him, was able to read in the late-night/early-morning hours. Unlike a lot of serious readers, I don’t record what I’ve read, so the following book list is incomplete. But here are some that I found to be helpful during this very hard time of life:
Books that eased my way (a partial list)
Strange Relation: A Memoir of Marriage, Dementia, and Poetry, Rachel Hadas. This was one of those books that shows up when one most needs it. It was probably spring of 2011, shortly after it was published, when I first found it. I was lonely for the husband I’d once known, feeling guilty that I either couldn’t or wouldn’t care for him on my own, frustrated that, even with Mike in residential care, the demands of watching out for him, plus living with financial disaster, were keeping me from any concerted writing time. More than anything Rachel Hadas’ story let me know that I was not alone. She is a poet and scholar. Her husband was a musician. It seemed we had some things in common. She, too, was puzzled by her husband’s changes in behavior. By his lack of concern for her. Guilt. Frustration. Demands on her time. Loneliness. There were so many parallels in our experiences, it was as if we were sharing a lifeboat—so much easier to row with two people handling the oars rather than handling them solo.