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.

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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.

Wednesday, July 30, 2014

Caregiver Space.

This is a link to an essay I wrote for The Caregiver Space, an amazing blog/Facebook page that is all about supporting and informing caregivers, with lots of great posts, opinions, articles, etc.
In my essay, I talk about the benefit of support groups for those of us walking the caregiving road. I focus on my Lewy Body groups and how beneficial it has been for my members to be in a group of people that understand their particular struggle. However, I wanted to add that whatever dementia or illness your loved one, or maybe you, suffers from, a support group is a must-do. The balm, fellowship, and great info that you'll find there will be life-changing.
I urge all caregivers to find a group near you, and if there isn't one, and, tragically, there still aren't enough, check out the many on-line forums, chat rooms, blogs, and Facebook pages around. Memory People on Facebook is one such amazing group - it is a closed group but you just have to ask to join and someone will contact you.
I hope you go to check out my essay, but stay for the content and the comfort that The Caregiver Space provides. 

Wednesday, July 23, 2014

Sharing Shakespeare.

My husband is performing in Henry IV, part 1 at the Colorado Shakespeare Festival this month, and it has been all Shakespeare all the time for a few weeks now. So it wasn’t surprising that when I went to the bookstore the other day to find something new to read to Dad, I thought of picking up a collection of the Bard’s plays, a greatest hits, if I could find it, or his Sonnets. Reading to Dad has been so rewarding, lately, but I’m getting tired of the Bible, although the Psalms are always a good standby.

In the end, the bookstore didn’t have a good complete collection, only the plays individually, but I ended up getting a book of poetry instead. Poetry for Hard Times, a collection edited by Garrison Keillor, one I’ve looked at before briefly and thought might be good for Dad. I also bought a copy of Thoreau’s Walden, which I have read before and thought Dad might enjoy hearing since he was something of a nature lover (and was big on simple living.)

The poetry collection turned out to be a winner; I knelt by Dad’s chair and leafed through it, picking out poems I liked or had seen before and reading them out. Surprisingly, Dad was very alert and seemed interested. He kept his eyes focused on my face, and I looked up often to smile at him. At times, I caught a faint smile on his face as he looked at me. I’m not sure if he was trying to figure out what I was doing or saying, or just happy to have company, but it was just so nice for me to have him so engaged. As I’ve said before, I doubt he knows who I am – if he does, he’s not saying – and while I came to terms with that a long time ago, it’s still nice to imagine he enjoys my presence.

It reminded me of a conversation I had with a caregiver a few days before. This person was describing how their sibling wouldn’t go see their parent with dementia because she “didn’t like seeing him like this – it’s too hard.” I know that people deal with the difficulty of having a loved one with dementia in their own way, so I won’t criticize, but being there with my Dad just made me realize once again; we don’t visit for us, we visit for them. In the end, it’s not about us, it’s about making our loved one feel connected to the world; giving them companionship and love; and affirming the invisible connection between us.

I had my issues with Dad in the past, and I would never judge other’s decisions to be part of a loved one’s life or not. I can only say it made me happy to read to my Dad and have him look me in the eyes and be present, if only briefly. I didn’t get to the Shakespeare, but I’m sure my husband will have a collection I can bring from home next time. But we did pretty well with a collection of poems – ultimately, it’s not the words that matter – it’s the reader saying them, and the listener receiving them.

Wednesday, July 16, 2014


In the last few months, the subject of sex has come up a lot in my discussions with caregivers, so when I saw a book about sexuality and dementia pop up on my Amazon list I was happy, hoping it would help me answer some of the concerns and questions I’d been presented with. It is an interesting topic because sex in normal life is a private, somewhat taboo topic; sex in dementia life can be even more difficult to talk about! But I’ve had several caregivers present different sexual situations involving their loved ones, and it seemed like a good thing to explore.
The desire for sexual intimacy doesn’t just stop when someone is diagnosed with dementia. Sometimes, sexual contact continues between caregiver and loved one late into the disease and that’s great, as long as everyone is fine with it. I’ve also talked to caregivers who wanted suggestions for how to avoid the sexual inclinations exhibited by their loved one; either toward themselves or towards the other parent, if the caregiver is an adult child of someone with dementia.

I gave the best answers I could to these requests for solutions to a delicate problem, but it made me realize that in all the books I’ve read on dementia, there hasn’t really been much discussion about how to deflect sexual advances carefully and tactfully. Some of the books cover sexual behaviors in facilities and how professional caregivers should handle it, but there wasn’t much for the family caregiver.
I had no problem with Dad having sex, as long as it was consensual (and I didn’t know about it!); in fact, when I toured facilities the first time, I asked all of them what their policy was on sexual relations between residents, whether they allowed them, and how they handled it. Since I knew that relationships in facilities between residents were possible, I wanted Dad to be in a place where it was okay to experience as much of the relationship as possible, should it happen. The subject of a relationship between Dad and a resident never came up - however, he did have a relationship with someone else.

A few years after my mom died, my father started dating a woman named Janet, who was a lovely individual, although she had some personal issues. I imagine they had an intimate relationship, not that I wanted to know about it, but they eventually broke up. After I moved in with Dad, unaware of his physical situation, she began sending him letters suggesting a renewal of their relationship. I met with her and told her about Dad’s illness, then we all had lunch together, which everyone enjoyed. Eventually, I hired her to be one of Dad’s informal caregivers; a few days a week she would take him out to lunch, or to her house, or on a walk with her dogs, etc.
The situation worked for a few years, until her mental issues began to intrude, making me concerned for Dad’s safety and my own sanity, and I fired her. (This story is detailed in my new book!) Until that time, I know that they enjoyed spending time together, and I suspect they resumed their intimate relationship, which I was fine with. Eventually, I suspect he lost that drive since he never really exhibited any sexual behavior to his caregivers or to me.

As a family caregiver, it is important not to ignore the question of your loved one and sexuality. Think about various scenarios and decide how you feel about them and what you think is best for you and your loved one. If they are your spouse, it is up to you whether you want to continue to have a sexual relationship; if not, there are ways to deflect and redirect that energy. Sometimes, what comes out as a desire for sex is actually a desire for touching or affection or connection.
Sometimes, dementia sufferers who are living close to each other in facilities make the reasonable assumption that the man they sit with at dinner every night, or the woman they take walks with is actually their spouse, or that they are in a relationship, even though their spouse may still be alive! Some families have a problem with this, some don't. Personally, I think as long as everyone is safe and happy, who cares if they find comfort with someone else? In any case, it is up to the family to make the decisions, but try to open your mind to the possibilities somewhat since your care receiver's well-being is what really matters, not your own feelings.
Make sure everyone is safe and comfortable and not doing something they don’t want to do. If you are placing them, find out the facility’s policies on sex between residents, what they do with inappropriate sexual behaviors, etc. Sexuality is a natural part of being an adult, and it doesn’t just go away with the onset of dementia. Don’t be embarrassed or uncomfortable, and find a good support group or peer who can discuss options and normalize it for you.

Sexuality and Dementia, by Douglas Wornell: I recommend this as the first book I’ve read directly addressing dementia and sexual behaviors. He covers reasons for sexual impulses in those with dementia, as well as medication issues, and the possible issues with sexuality in facilities. I wish he gave a few more strategies for how to disarm a situation between a family caregiver and loved one, for example, but he does suggest some, such as redirection. A quick, informative read!

Thursday, July 10, 2014

I've never heard of this site but this is a very interesting article on a new test for Alzheimer's. For so long the only way to decide whether someone had Alzheimer's, or other types of dementia, was more guesswork than anything else.

People ask me whether it's really worth it to get an accurate diagnosis, arguing that, in the end, dementia is dementia. In some cases, I agree with them, however, getting a correct diagnosis (or as correct as possible) can help avoid medication problems, since some meds are harmful for certain types of dementia; can help people get services and support aimed at that specific disease; and can help families plan ahead for housing and care.

I know that there are other tests like CatScans and MRI's that help determine a diagnosis, but the only way to know for sure is through an autopsy. It is heartening any time we see some sort of advance in medical science related to dementia - usually Alzheimer's. I know I usually focus on LBD and not Alzheimer's, so I'm hoping that they might tweak this test to help diagnose that, but any win against dementia is a win for all of us.