Sunday, September 14, 2014

How Inspiring!

I am so honored to have been nominated by a fellow blogger for a 'Very Inspiring Blogger Award"! I had noticed this award going around and was hoping my blog makes enough of an impact to be noticed and I'm grateful to Sandra Ross from,, for her nomination. It just means so much to have people know you've been heard and noticed; it makes what I'm doing even more worthwhile!

The rules of the game are;
  1. Thanking and linking to the person who nominated you.
  2. Listing the rules and displaying the award.
  3. Telling seven facts about yourself.
  4. Nominate 15 other bloggers and comment on their posts that they have been nominated (this will be a hard one because a lot of the great blogs I follow have already been nominated!)
  5. Display the award proudly and follow the blog that nominated you.
The blogs I nominate are:   By the lovely writer Emily Caldwell.   RA Guy has done a huge amount to spread awareness, understanding, and support about RA.   Kathy Lowrey writes an amazing blog, and has now started a second one about life after caregiving.  Kathy Ritchie writes a lovely blog and is doing so much to spread the word about dementia.  Linda Fisher works tirelessly to advocate for caregivers and dementia sufferers.   Because not all caregiving is about dementia. Trish Hughes Kreis' great blog.  SK Waller writes beautifully, especially about her health concerns and living with a chronic illness.  The Whitworths' work so hard to advocate for caregivers and those with LBD.  I just like Emily's blog!  I really enjoy Beverly Johnson's blog and her writing.  Leslie writes beautifully about living with a chronic illness.  I don't know much about the blog's author but I really like her pithy stories and her spirit.

Some of these blogs may already have been nominated, so they'll really know they are doing something right! I've also included blogs about living with chronic illness, because that's a big part of my life.

Seven facts about me:
  1. I love dahlias and I grow them in containers in my garden.
  2. I am a mixed media artist, working with fabric, quilting, found objects, paper, and leather. I especially love old keys and feathers!
  3. I got married on Kauai where someday, my husband and I hope to have a vacation condo.
  4. I became a caregiver at 33 and had no idea what I was doing but I'm really glad I took on the challenge.
  5. I read, a lot! Mostly present-day fiction, memoirs, and creative non-fiction.
  6. I am currently teaching my step-daughter how to drive, which is quite the adventure.
  7. I love doing hospice work, working with families, and facilitating grief groups for those who've lost loved ones. It is the greatest honor to work with those at end-of-life, and those who are bereaved.
Thank you again, and please visit the blogs I've linked to!

Monday, September 8, 2014

Surgery - Yes or No?

There was a post on Alzheimer's Reading Room, the best clearing-house for dementia and caregiver information currently, about anesthesia and it's effects on dementia. Below is a link to their list of articles and other information about this important topic. Too many caregivers and loved ones of dementia sufferers don't yet know the dangers of anesthesia to those with dementia.

It can cause a worsening of cognitive dysfunction; physical paralysis, muscle contracture, and other problems; and increased delirium and confusion. These effects are particularly bad in those with Lewy Body dementia.

Even though I knew Dad had Lewy Body dementia, I wasn't aware of the risks of anesthesia. I authorized a surgery for a double hernia, which I probably didn't have much choice about, but which I would have considered even more carefully had a known about anesthesia and dementia. After the surgery, I noticed a marked drop in his mental presence, facial affect, and cognitive abilities. I only found out a year or so later that the anesthesia had probably worsened his LBD symptoms.

When my caregivers ask whether they should authorize a particular operation or procedure for their loved ones with dementia, I always inform them of the risks, tell them to talk to the physician and research other options, and decide whether the procedure is really necessary.

Check out the link below for more great information.

Thursday, September 4, 2014

What's Your Orientation?

This is a subject that comes up often in caregiving discussions, thank goodness! The question of whether you should re-orient your loved one if they get confused about where, or when, they are. I saw the essay I've linked to below and it reminded me of what I used to do with Dad and how important it is to keep talking about this, even though practices have changed a lot in the last ten years.

When I started caring for Dad, the prevailing wisdom was to continually remind your loved one with dementia about who they were, where they were, what year it was, and that the people they might be talking about having just seen had, in fact, been dead for forty years. It was called 'reality orientation' and it meant that family members and facility staff corrected people with dementia all the time. Even before I knew anything about dementia, and how you should treat people with it, it seemed like the cruelest thing in the world to keep making them even more confused and anxious by forcing to think or remember a certain way.

Years ago, I watched my aunt and my father deal with my grandmother, who had vascular dementia. My aunt insisted that what my grandmother said was wrong, that the people she was talking about were dead, that is was a different year from the one my grandmother thought it was, etc. I knew nothing about dementia, but this seemed so pointless and mean to me. Who cared where she thought she was, or who she thought she was talking to? When I took over for Dad, I decided early on that I was going to go along with whatever he said or did.

And I did, and it was fine. He would tell me wild stories about having been on his sailboat on Lake Washington during a huge storm that trashed the boat, and how lucky he'd been to stay alive. I knew the boat had gotten loose in the wind five years before and crashed into a dock, but I didn't remind him of that. He told me that my mother had died while giving birth to my sister, who was too big (I think he was thinking of her as a full-grown adult), and I just listened. I don't think he ever mistook me for someone else, but then he kept a lot of what he was experiencing to himself, so I don't know how he saw me. I do know that it kept him relaxed and unstressed that I didn't try to make him think something he couldn't, and I got to hear some interesting stories!

Now we know that people with dementia are unable to make current memories - snapshots, if you will, of what is happening in the present. All they have are snapshots from the past, and a lot of empty pages in the present. Lacking these recent snapshots, they try to make sense of current events and people using old memories. So a waiting room might look like the airport they used to fly into as a pilot. Or they think a caregiver who they see all the time and who cares for them intimately is their mother. Seems logical to me.

Dad and I are past the point where he's even talking, let alone mistaking me for his mother or thinking that he's somewhere, or somewhen, else. I no longer know what is going on in his mind or what he is thinking or feeling. I'm proud of how I dealt with his dementia, though, and that I made his life as comfortable and enjoyable as possible - largely by trying not to remind him he had dementia!

I'm so glad that practices have changed in the last few years and that good people have studied dementia and what it is doing to the brain and behaviors. Wonderful people are developing new techniques to deal with those with dementia in a compassionate and low-stress way. I tell all my caregivers not to try to keep their loved ones in "reality" because what is reality after all? Reality should be a relaxed, non-stressed care receiver!

Learning to Speak Alzheimer's. Joanne Koenig Coste
Contented Dementia. Oliver James

Thursday, August 28, 2014


I went to see Dad yesterday for the first time since getting back from Boulder, CO (site of lots and lots of Shakespeare!) It was good to see him, and I was early enough to catch him at lunch, which I usually try to avoid since I don't like getting in the caregivers' way. He was pretty alert, and he half-smiled at me when I smiled at him, and widened his eyes at me in the teasing way he sometimes does. His favorite caregiver told me that Dad had said "Hi!" to him that morning, which apparently is a rare occurrence. It was good to hear that Dad still reached out sometimes into the world.

The last few times I've visited; in fact, most of the time when I visit, Dad has been sleeping. I don't know if it's just the disease making him sleepy, or perhaps he just prefers to descend into sleep as much as possible. However, on my last visit, I realized that he might not really be sleeping. In fact, as I watched him raise his arm to scratch his face, while keeping his eyes resolutely closed, I realized that he might just be retreating from a world that is no longer comfortable or comforting.

It made me think, as I drove away, about him squinching his eyes closed, even though he may have known I was in the room. I thought about how rarely I see him awake and alert, and about the fact that he may not be unconscious all the time - he might just be enduring. And if there's one person who can endure - it's my father. He was the most stoic, quiet, uncommunicative man and he bore the dramas, injuries, and traumas in his life without complaint or discussion. He just tightened his jaw a little further, and kept on. The only time I really saw him unhinged was when my mother died.

It makes me sad, the fact that he's just enduring what has become an untenable and unbearable life. I try to enjoy every little, tiny thing about my life because I don't know how long I'll have it, or what will happen, so I try to be grateful for what I have. There have been times, mercifully short, when I have had to just endure life - once when I got Rheumatoid Arthritis and once when I relapsed - and I remember how horrible it was and how glad I was when it was over. I would hate to have to endure the life that was happening to me...for years.

And that's what is happening, with dementia sufferers and their caregivers. Endurance, sometimes for years, of difficulties, dramas, and unbearable indignities. There is really nothing to do but endure and hope for something better for our loved ones after their death. Most of the time, I hope Dad doesn't have to endure much longer. Today, though, it's nice to see him up and about, enjoying his lunch as much as he ever did, surrounded by people who love him.

Monday, August 18, 2014

Energy Exchange.

I was talking to a caregiver a few weeks ago, who has been sharing her caregiving journey with me over the last year. A year ago, she came out of the denial phase that we all go through when we first see dementia in a loved one, and realized that there were some serious issues with her mother that needed to be addressed. She approached me for some advice about what to do and where to start and I was happy to help.

Unfortunately, her mother lives across the country, which made it more difficult to start the process of taking over financial affairs and overseeing her mother’s health. There is an older sister who lives relatively close by but as is often the case, the sister is reluctant to commit to doing much for their mother and not as responsible as my acquaintance, who has had to take on almost everything.

I few months ago, I learned that the caregiver had gone through the difficult process of convincing her mother that it was time to move to a facility, which had gone smoothly, and everything seemed to be progressing. My friend had also gone out to clean out and close up her mother’s home, again with limited help from the sister. My friend mentioned in passing that she was really struggling to find the time at home to take care of all her mother’s bills and clerical tasks: she felt her own job, and her time with her family was suffering. She also felt she was resenting her mother's tasks, and therefore not doing them well, and there had been problems with late payments.

I suggested several tricks to make her tasks a little easier: putting all her mother’s mail in one spot as it came in and designating one particular day a week to deal with it (Dad gets more mail than I do, and it piles up); spending a designated length of time, doing only her mother’s tasks; paying as many bills as possible on-line and automatically, something I have found to a be a lifesaver with Dad’s various bills and payments; and marking in her calendar when various things would be due. I also suggested that, if her mother’s estate could afford it, that she should really get paid for what she was doing, something that she seemed surprised to hear.

I told her that her time and energy were worth being paid for; I reminded her that she wouldn’t do work for a client without presenting them with an invoice. She was devoting valuable time to her mother’s business, and she deserved some sort of exchange for that. So often, caregivers don’t look at their situations this way – they don’t believe they are worth getting care back. Often, resentment and bitterness can grow, which harms us emotionally and can affect the job we are doing with and for our loved ones.

Most people have the, somewhat idyllic, idea that caregiving is done only out of the goodness of our hearts, because we feel the call, and because we are happy to care for our loved ones. This may be true, but what is also true is that caregiving is a job – and a tough one. I wanted to care for my Dad for personal reasons, but I also knew that I could only do it if there was some sort of energy exchange – in this case money. I would be sacrificing a lot, and I needed to have compensation for it, financially and psychologically. Luckily, my father had enough money to make this possible.

I urge caregivers to ask for some sort of energy exchange for the phenomenal jobs they do. We all deserve an exchange when we use precious energy and time for another’s care or benefit. There isn’t always money available for a paycheck, as in my case (and believe me, I wish there were, especially money from the government), but there are other types of compensation. The use of a care receiver’s car for tasks and errands; a little extra money for a caregiver’s groceries; or living rent-free with the care receiver. Be creative in finding ways to receive – because you ARE worth it!


Saturday, August 9, 2014

Did Malnutrition Make Dad's Dementia Worse?

It has been shown that malnutrition in the elderly can lead to fatigue, depression, muscle weakness, weakened bone health and immune system, anemia, weight loss, and heart problems. Poor nutrition also obviously leads to a decrease in much-needed vitamins and minerals. Malnutrition in the elderly often happens when they are living alone and are either too weak or uninterested in feeding themselves properly, or have medical issues that keep them from eating. Although it is starting to get more attention, and more articles are being written, many people still don’t know about the connection between poor nutrition and dementia.

Poor nutrition not only worsens the symptoms of dementia, but increases the chance of an Alzheimer's sufferer needing hospitalization or institutionalization. One study that looked at institutionalized patients with dementia found that fifty percent of them had calorie or protein malnutrition. Malnutrition can make the symptoms of dementia worse for people unfortunate enough to have this condition; people with dementia who are undernourished may experience a rapid worsening of their dementia and their health.

When I realized that there was something seriously wrong with Dad, and that I couldn’t be in denial anymore, it was partly because I became aware of how he was living and what he was eating. His house was dark, cold, and messy, and he had evidently largely been eating carbohydrates. Dad has always suffered from depression and I can only guess that eating bread sandwiches (bread with a bread filling), chips, potato salad, cookies, crackers, and pop was his body’s way of helping that, since carbs can temporarily improve depression.

I felt so bad when I saw what he was doing, and even worse when I realized the many layers of clothing he was wearing masked a very thin frame. Dad has always been naturally skinny, but he had lost a lot more weight. I don’t know whether the poor eating had helped cause the cognitive issues I was seeing or whether the cognitive issues lead to malnutrition, but either way, he was in danger. When I took him to the doctor, she diagnosed him with a serious B12 deficiency, which was the first time I heard about that vitamins connection to dementia.

Researchers have discovered that deficient vitamin B12 levels correspond to both a decline in cognitive ability and a decrease in brain volume. Brain atrophy (a loss of cells that causes areas of the brain to actually become smaller) has been clearly identified as one of the physical effects of Alzheimer's disease. A deficiency in this essential vitamin can cause dementia, as well as depression, bipolar disorder, nerve damage and anemia. For dementia patients, if a Vitamin B12 deficiency is prolonged, reversal may be impossible. If the deficiency is caught in time, it may be reversed, and cognitive abilities approved markedly.

Now I urge the people I meet who are just starting to notice cognitive problems in their loved ones to assess their nutrition and have a doctor check their levels of B12 and other essential vitamins and minerals. Some of the cognitive issues they are seeing could be completely reversed, at least temporarily. Dementia symptoms don’t automatically mean Alzheimer’s; there are many other factors that can be ruled out first. I still wish that I had been braver about dealing with what was going on with Dad. Perhaps the cognitive decline could have been reversed somewhat, or slowed down – I’ll never really know.

Read more :

Sunday, August 3, 2014

Up In The Air.

Summer is always an evocative time for me. The first weekend of August always makes me think of my parents. In Seattle, the first weekend in August is Seafair weekend, when many people get together on Lake Washington on their fancy boats, and various other “floating” objects to drink, enjoy the sun, and watch the antiquated and almost non-existent sport of hydroplane racing.

I think about my mother because she died on this weekend, twenty-four years ago this year. I still miss her. I think about my father because almost every Seafair weekend for the past thirty years or so, the Blue Angels synchronized flight team have come to perform. For most of the week leading up to the weekend, twice a day you can hear the shriek of jets as they streak low over the city, practicing their fancy stunts and familiarizing themselves with our air space.

Dad loved the sound of the jets. Until a few years ago, his aide, Del, would take him out on Seafair weekend to some hill overlooking Seattle so he could see the Angels flash over him - feeling in his body the thrum of the engine and the plane cutting through the air. Dad loved pretty much all planes, actually. For a few years in my early childhood, he had his pilot’s license and would take us flying, and for as long as I could remember, he was building planes in our garage.

The problem was that Dad was a workaholic – feeling so responsible to his family, his job, and his other duties, that he rarely gave himself the time to work on them. There was always Boeing to go to, or a car engine to repair, or a toilet to fix, or yard work to do. Every year, he got a week off at Christmas, and he would spend the whole week downstairs, filling the house with the smell of epoxy. But he never finished.

When the time came to clean out the garage – a mammoth task – we found no fewer than three different planes, in various stages of construction, and piles and boxes and stacks of plane parts, engines, gears, wings, propellers, and more. We arranged an estate sale for people to come and pick over his many tools, but I despaired of finding something to do with his planes. I didn’t want them to just go to the dump – all that work and dedication, wasted.

At the last minute, on the day of the sale, a small ad we had put on Craig’s List paid off. A local man called asking about the plane parts. His voice over the phone became almost tremulous with excitement as I listed what we had. He told me not to get rid of it – that he would be there as soon as possible - and he was, trailer and friends in tow.

In the end, they took everything, even small parts and instruments we’d already thrown out. They combed through the dumpsters, finding everything they could. As the man wrote me out a check, I almost couldn’t contain my happiness. Dad’s work – his passion – wouldn’t be wasted. He had never finished a plane, but now his various parts and pieces would be resurrected – used in the way they were supposed to be.

So today I hear the scream of the Angels, and watch as they race across the clear sky, and I remember my parents – for different reasons. I remember my mom for her laugh, and her love of me. And I remember Dad’s planes and how they were an expression of his inner self – a dream of flying, of slipping the surly bonds of earth. He loved to fly, and I hope that somewhere, somehow, his planes are flying too.