Tag Archives: caregiving

Who I Am Yesterday finds Barnes & Noble, and a lot of new friends

Over the past month, I have been working towards a book signing arranged for me by Greta King, a magical marketing agent. My debut run at this activity was at Barnes and Noble on Black Lake Blvd in Western Olympia, Washington. Since my book is about caregiving and the things one must learn to live with a loved one with dementia, I chose to expand my influence.

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I spent some time in the offices of Council on Aging in both Aberdeen and Olympia, and collected a substantial amount of literature about support groups, resources, and organizations. That collection followed me to the signing, and will become a permanent part of any signing or speaking engagement I secure in the future.

In addition, I put together a short resource guide that included several book titles, and links to sources of clothing, medical equipment, and care supplies. That guide is available here. My list of reading material includes the literature provided by the Council on Aging, along with links to acquire additional information. Even if SW Washington is not where you live, the list is broad enough it will provide a starting point to locate support closer to home.

My local newspaper also published a brief article about the event and something about my book.

For this event, Barnes and Noble used my resource list to locate titles within their store that might be of help. These became part of my display. The store management was very gracious and mentioned several times how happy they were to be a part of my mission to inform, to comfort, and to share.

Then, of course, the event. Yes, I sold a few books. The store will continue to stock my book, at least for a while. I also had a chance to talk with people who needed and wanted what I had to offer. One group of ladies had traveled to hear me speak and when they realized I was not speaking, asked for contact information so that they could invite me to speak to their group. They left well supplied with materials, a signed copy of my book, and a few answers I could offer based on my own experience.

Another lady stopped in mid-stride as she came through the door and announced she had just decided she needed a cup of coffee and had no idea why; until she saw my table. Again, after having a cup of coffee and reading through a few things, she left well supplied with information, and a signed copy of my book.

John McBride, from the office of the Lewis-Mason-Thurston Council on Aging, stopped by with his wife to get my autograph on the copy I had left with his office. From what I hear, both his office and Aberdeen may be contacting me about acquiring more copies for their people and to share. There are also hints of a speaking thing or two in the future.

I would say, all in all, the event was a success. I know I thoroughly enjoyed meeting the people that stopped to say hi and talk (or grab a bit of candy). I think I will be a welcome guest at the store in the future, and I have made contacts that may well expand my reach and my ability to share. Not a bad start; not bad at all.

Choose to Dance – find the way that clearly defines your needs as a caregiver, and the needs of the person being cared for – and dance to your own tune.

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Cuddles at Midnight

The fate of an author. Finding that place between tooting your own horn and blatant self-aggrandizement. In this case I get to use the platform to introduce folks to a wonderful publication. One I am quite honored to be a part of.

My creative non-fiction essay, Cuddles at Midnight, was published in the Eastern Iowa Review. I’ve read the entire issue and found a thought-provoking, fun, and evocative group of authors.  It is a publication that looks for “good spaces” in whatever the circumstances may be, something that is right up my alley.

Please check it out, including a sampling of the works included.

http://www.portyonderpress.com/issue-1—2015.html

EIJ

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Reflections ~ Journeys, Great and Small

I see that I have been inattentive to my audience in my little alcove. Please accept my apologies. Life’s journeys have kept me very preoccupied of late and it’s time I express some of those experiences since they bear greatly on one of the themes in my rooms here: caregiving.

Way back in January I posted that I had made the decision to seek out a new home, a place nearer the ocean that both my spouse and I love so very much. It started with a day trip to Aberdeen, Washington in search of a place we could call home. It was the first time I had been out of the house to actually go somewhere since bringing him home on January 9. Nearly a month at the time. A very odd experience.

I found a place that suited all of my requirements. A one-owner home that had been well cared for but never upgraded. A project house, if you will, to help me bridge the space between caregiving and, well, “after.” It also provided a comfortable arrangement for my office and library so that I could build my practice and be able to work with clients without anyone invading my private home. Perfect in so many ways.

Then the stuff of contracts and negotiations and inspections and appraisals and all the other commotion required in such things began. It’s been a rocky road. It’s still not over. But we are closer. And while the wheels of real estate deals grind, many changes have continued to occur in my life.

One of the advantages of being certified for hospice care is that you suddenly have an army of people to help you. Volunteers are limited in what they are permitted to do. They are not permitted to transfer the patient, feed them, or change them. They can, however, spend hours reading, talking, sharing music, or simply watching. Without them there is no conceivable way I could have hoped to have us packed in any reasonable length of time. I also managed to acquire a volunteer that was a professional mover. The woman was a machine. I would sort for hours and she would come in and have it all packed in no time at all. She ran stuff to Goodwill, the post office, the UPS store and helped me try to find homes for things I no longer needed. Between my volunteers and my truly amazing hospice care team, the last two months have been manageable. The dream of a home of our own truly possible.

In that process, though, it has become increasingly apparent that the love of my life is declining at an ever increasing pace. You don’t notice quite so much from day to day until you sit down to talk to the nurse about the changes since her last visit. With amazing rapidity he has developed many of the end-stage conditions of dementia and related ailments. It is now a balancing act between what must be done for one condition versus what must be done for something else. I face the stark reality of palliative care decisions each and every day.

The hardest part of my journey thus far was this past week. As I anxiously waited to find out if the seller was going to accept the value assessed by the appraiser (an answer I still don’t have at this moment) I had to take myself quite firmly by the emotions and acknowledge that he just might not be with me on my journey to the sea. The prognosis at this point is weeks, not months. With that acknowledgement I was able to turn down the stress meter on myself, my agent, and my loan officer. They have been working so hard to make this happen and every little bump caused everyone so much stress I was afraid we would start to make decisions that were not wise for anyone. So, I took a step back and accepted that I may be finishing this particular journey on my own.

I have thought about care options in these last difficult weeks. It is not that I am completely adverse to professional and caring facilities. I know that when I checked him into rehab what seems so very long ago, we were both in tears. Leaving him there was one of the hardest things I had ever done. The issue is that the tie between us is so tight that even outsiders observe it and often mention it. He has not known my name or who I am for nearly four years; and yet it is me that he reaches for, me that he holds close and wants to hug, me that he wants to touch, and me that receives his kisses. For both our sakes, I shall do my best to keep us as one to the very end.

Wedding

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Memories that Strangle

Rings. Symbols of promised love, a symbol of taste or status, a gift. A gift that can turn ugly with little or no warning. I tell this story because it is something easily missed in the rush to care for someone suffering from some form of dementia. One more hazard in life’s ever more restrictive path.

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When my husband and I got married, we decided to do something a bit different. We selected titanium rings. This is an extremely hard metal that does not yield to much in this world. Just about the only way to do much more than scar it is to use a diamond blade. We loved the cool, gray metal, the uniqueness, and the idea of endurance.

There was a bit of a problem. His ring finger was sort of in between things. He lost the ring twice (and found it again) and we even purchased a replacement (only to find the lost one). We were told that to have a smaller one on his hand would risk not being able to remove it over his knuckle. Well, he solved that and wore the ring on his middle finger – for years. Until a couple weeks ago.

One morning as he reached for my hand he jerked back and seemed pained. On closer inspection I realized that I had missed a gout episode in the making. It was his ring finger, and it was already quite swollen and warm. Knowing the strength of the metal and the impossibility of removing it if things got worse – off to urgent care we went.

They did take us in immediately. It was obvious there was an issue. And they tried. Squishing, squeezing, the thread trick (I don’t think they did that one right), the ring cutters (even the electric ones) and nothing. It was only getting tighter. My poor husband was in pain and the ring was going nowhere. Someone got the bright idea to call orthopedics.

Some 30-40 minutes later (while I kept hand up and cold pack on the finger) here came the bone doctor with the one thing I knew we needed; a diamond bladed saw. It was really quite an operation. I held a couple of supports under the ring to protect the finger as best I could, the doctor sawed, and a nurse ran a saline drip to keep things as cool as possible. The doctor passed out eye protection against sparks and spray. And we cut. Twice. We couldn’t force the thing open with only one side cut. When the ring came off my poor husband had a second degree burn. The metal had heated up even though we did our best to avoid it. Interesting that the only time he took his hand away is when we stuck it in a bucket of ice. With all the ignominies he had suffered that morning, ice water was one step too far.

There was a point while we were waiting for the orthopedic fellow that someone was floating the idea of visiting the jeweler. Really? Do YOU know a jeweler that would take the liability of taking in some poor bloke with dementia, saw off his ring leaving a 2nd degree burn, all the while hoping the wife had the right whatevers at home to care for it? Um, maybe somewhere the lawyer count is lower but not in my neck of the woods.

The moral, of course, it to be a bit more watchful of those who can no longer understand or communicate when they see a problem coming. In years gone by, any hint of gout and the ring would have been off until things were back to normal.

Be wary the midnight strangler. Put jewelry safely away. If it is missed find a flexible substitute. It really is a near thing that we lost a ring, and not a finger.

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My visit to the Health eBrain Study

Well, this time my poking around really got me into things. I had written Meryl Comer, author of Slow Dancing with a Stranger, because I was so touched by her experience. She just happens to be a very reachable kind of lady and full of passion for her focus; mental health. During our chat she asked if I would share the press release for the Health eBrain Study around noon EDT, September 29, 2014. And I did. Everywhere I could think of. I also went one step further – I took the test.

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It’s a simple test that really doesn’t take all that long to do. You do provide some demographic information, mainly so that the researchers can compare apples with apples, sort of. It is NOT an IQ test. It tests your response time, the ability to remember a sequence (both forwards and backwards) and your ability to assess changing information based on some really simple parameters. Your score is provided at the end of each section and you are allowed to practice – how many times I’m don’t really know. If you do decide to take the test, I suggest you close everything else on your computer (yes, even Facebook) so that you can focus and do your best. It also helps the response time on some of your answers. My mouse got stuck in a couple of places and caused me to register a few errors. Which is okay; you aren’t competing for a scholarship or a vacation or anything, but it is a nice thing to provide the most accurate information you can.

So what is all the fuss about? Let me quote from the press release.

Changes in cognitive efficiency are closely linked and can occur with depression, fatigue, stress, and long-term chronic illness. This impact is particularly severe for caregivers of individuals with complex chronic conditions like Alzheimer’s and other dementias, two-thirds of whom are women. The physical, mental and emotional burden over time can take as much as ten years off a family caregiver’s life. It also can increase the caregiver’s own risk for dementia. [The numbers Meryl gave me are 6-1].

“Over fifteen million unpaid individuals provide care to the 5.4 million victims with Alzheimer’s or other dementias. [Just to point out the math, that is less than 3 individuals per patient which means that most of us are working far more than one 8-hour shift, seven days a week, 52 weeks a year.] We form the backbone of all unpaid long-term care in the U. S. What happens to our loved ones if something happens to us?” (Meryl Comer, a 17-year veteran of caregiving and President of the Geoffrey Beene Foundation Alzheimer’s Initiative.)

I really urge caregivers to take this opportunity to contribute to serious research about the impact of caregiving. It can give us much needed tools to mitigate or defer the impacts of a mind on holiday.

I have attached the press release for the study. The list of supporters for the program read like a who’s who in the world of caregiving and dementia. You will also find links to the video and to the survey itself. Again, no money is required – just a few minutes of your time to increase the pool of information that researchers need so desperately to find ways to help the caregiving community and those they care for.

Health-eBrain Study link: www.health-ebrainstudy.org

Geoffrey Beene Foundation Alzheimer’s Initiative: http://www.geoffreybeene.com/alzheimers.html

US Against Alzheimer’s: http://www.usagainstalzheimers.org/

Meryl Comer on Facebook (great news feed on things going on): https://www.facebook.com/meryl.comer.alz

What it is all about: https://www.youtube.com/watch?v=7dD3ROvJvbo&index=1&list=PLETJvf11XiB_EmzOS44Py8YCRC4VzHLOr

 

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Book Review ~ The Dance of the Absent Mind

Slow Dancing With a Stranger, Meryl Comer, Available on Amazon for $13-20

Slow Dancing CoverAs strange as it may seem, I don’t often read books about dementia. I do read a great deal about the brain, memory, and where we are in researching the functions of the mind. I am certainly not aware of my reason for following up on a generally posted suggestion to read this particular title. A brief post stating it was a “must read” (aren’t they all) in a Facebook support group for caregivers of those with dementia caught my attention. Well, why not?

Meryl both stunned and encouraged me with her account of two decades of care for her husband who suffered from early-onset Alzheimer’s. She has faced many things I have not had to deal with, including anger, violence and very public battles as her husband slipped into the disease at a high point in his illustrious career. Dr. Harvey Gralnick was a brilliant NIH scientist working on the leading edge of Leukemia research. Suddenly, he was showing changes in his behavior. Anger and confusion, and fixations on things no longer relevant. In search of an answer Meryl spent hours in doctors’ offices with few if any answers. When care became necessary, she burned through hospitals and facilities until the only choice was home with herself as lead to a caregiving team. In later years she added her mother to the already monumental financial and emotional burden.

In her own words, when given the opportunity to return to work as an advocate for the disease and direct a foundation fund, she saw it as a lifeline. Not only would she have income again if she could manage to take the challenge on; she had a place for “the sound of (her) pain (to) go.” US Against Alzheimer’s is an organization that strives to establish awareness in two ways; early detection and research on prevention.

There is no cure. Dementia, and there are several types, destroys various parts of the brain. Different dementia affect the brain in different ways. But once those cells or neuro-connections are destroyed, we know of no way to restore them or their functions. We barely understand functions of only parts of the brain and some of the interactions between the various areas of the brain. We are only beginning to understand the function of memory, how it relates to who we are, how it is built and maintained and what sorts of things impact how it operates. Reconstructing this vital piece of who we are is simply beyond us at this point.

This means that we have to get better at knowing risks, understanding early signs, and finding ways of mitigating or forestalling the onset. As an example we have been able to beat back the effects of many types of cancer through one crucial factor: early detection. We know that it is no longer an automatic death sentence to hear the words: “You have cancer.” We can treat it, at least some forms of it. But nobody wants to hear that they are predisposed to dementia. That who and what they are can be stolen away from them in slow motion or overnight. With the misunderstanding and discomfort our society has for any mental disability or challenge; the last thing we want to admit is that we might be “losing it.” It is long past time we stopped playing games.

Meryl points out in her book that France, Britain, the EU, Japan, Canada, China and India have all announced national plans to fight Alzheimer’s. Where are we in this battle with all of our vaunted medical expertise? Somehow we have to bring our country back to open debate on real issues affecting ourselves and our future. It is not just the cost of the various forms of dementia; the financial and medical cost doubles or more with the impact on caregivers. Lost employment, lost coverage, and asset depletion all create a burden on families and the country as a whole. Care in a facility can range from $50,000 to over $100,000 a year. In the state of Washington Medicaid will not kick in for the first two years in a facility. In home costs include medical supplies and durable medical equipment. Then there is in-home nursing or caregiving support and, if the caregiver cannot find a way to earn money from home, loss of income from outside employment.

Can we really afford not to be aware? Not to know ourselves enough that our family and friends know our preferences for care before we can no longer decide? Not to take responsibility for the road that may be ahead? I love my husband dearly and I will care for him as long as I am physically able. I would not, however, wish this on anyone else. I know that I may one day be in need of some kind of care and that drives me to work ever harder to build a safety net. There really is no one left for me to fall back on and those that I know of should not be burdened. Let’s find a way to learn when and how to prepare until we know when and how to cure.

Meryl’s organization can be found on the web at: http://www.usagainstalzheimers.org/splash-caregivers

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Reflections ~ When Letting Go Gives a Firmer Grip

Epiphany. A word misspelled, misused and, sometimes, misunderstood. Its roots lie deep in Latin and relate to a moment of divine manifestation. There is even a feast named Epiphany on January 6. It also means (according to the Oxford Dictionary) a moment of sudden revelation or insight. In my opinion such moments are often life changing. I have experienced both joy and suffering at such times – today it was joy. Today I had an epiphany.

The last few weeks have been rather difficult in our household. My husband has been experiencing a number of deteriorating symptoms as he and I travel in this alternate universe called dementia. It became necessary to put him on a prescription that is meant to calm him. A move I was reluctant to make. But it did become a matter of necessity. Happily it appears to be helping.

He is slower. His communication skills have dropped precipitously. He is quickly losing control over his bodily functions. We have had much learning and adjusting to accomplish. Today he was becoming quite (actually royally) peeved with me because I would not take him to some imagined meeting he could not miss. This went on for a couple of hours and I suddenly realized that I was not upset. I was not tearing my hair out wondering what I was doing wrong. I was not yelling at the top of my lungs that I was doing the best I could. In fact, I started to giggle.

Standing in our kitchen looking at my beloved spouse, now so far from me, I realized that I was doing the best I could. Simple, right? Not really. Any caregiver can tell you that no matter how hard we try, somewhere deep inside we feel inadequate. We are not creating a perfect world for that one person we care so much about. We are not fixing it. And, sadly, we won’t. You know what else? It’s not our fault.

I could not do what he wanted and needed so badly for me to do right that very minute; and I did not feel a single ounce of guilt. Not one drop. At one point I was able to let him talk on the phone with our caregiver (we were setting up times for tomorrow) and he was promised she would be here and they would talk – and it worked. It wasn’t a desperate cry for help, it was a practical solution.

Can I keep this feeling? Cling to it for the release and freedom it gives me? Probably no more so than anyone leaving the Sunday-night revival and heading to work on Monday morning. But now I have a secret. I know what it feels like. And I can get back there. And from that place I will gain strength and I will do the best I can. I did not do this to him. It is not my fault.

Warning: The following clip does contain “South-Boston” language.  It is a scene from Good Will Hunting when Matt Damon and Robin Williams are discussing – it’s not your fault.

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