Saturday, April 25, 2015

One of Those Days with Alzheimer's

There are times, not many, but there are times when you do some of the dumbest things.
I like to blame the disease in cases like this. Everything started out fine today. Until I was sweeping out my truck. I have a shop vac and I get so tired of those wheels coming off.
Every time I pick it up, one, two, sometimes three wheels come off. I fixed that. I got out my super duper gorilla glue. That stuff will stick to anything and once it's on there ain't no getting it off.
Things were going well. All glued up, I was done sweeping, so I just let it sit so it would set up good and proper.
Sam (my dementia service dog) and I had a couple of things to do, and when we got back I thought I'll put the shop vac back. It has to be set up by now.
It was. Now comes the part where "things happen." Somehow some of the glue had went from the wheel housing, to the wheel, to the floor.
It was stuck like Chuck to the garage floor. Three out of four wheels. Could have been worse, could have been all four.
And when they say gorilla glue works, they mean it. There was no moving the thing. Wouldn't budge an inch. So...I figure I would take a hammer and tap each wheel.
Break it loose, if you will. I suppose this is the part where I don't realize the difference between a tap, and a whack.
I got them loose but not before breaking the one wheel off. So now I have a tripod shopvac.
And that all happened before 10:00 am. I can't wait to see what the rest of the day brings...
Editor's note: Rick's journey with Early Onset Alzheimer's Disease was chronicled in "Fade to Blank: Life Inside Alzheimer's," an in-depth look at the real lives of families affected by the Alzheimer's epidemic. His story continues on his personal blog on

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Friday, April 17, 2015

Caregiving is All about Love




In a comment on my recent post about Charlie's lack of emotional response to tragedy, someone felt I resented my husband for his inability to show compassion. That is far from the truth. I was merely bringing to other caregivers' attention the fact that this is just one more side of what happens to a person with dementia.
If your loved one is in the early stages of one of the mind-altering diseases, a lack of empathy is just one more thing that is probably in your future as a caregiver.
Actually, by a week after my daughter's fire, Charlie finally was able to listen to talk of the recovery and realize that something very serious had happened. He even was able to suggest that we should make a generous donation to the recovery fund that had been established. Now that's the Charlie I fell in love with.
But it took a whole week of talk about the fire before it became a reality to him. How long he will remain cognizant of the circumstances is questionable. Next week, he may not have any recollection that it occurred, or he may again suggest that we make a donation, not recalling that we already did that. That's the way of the disease.
I try not to be angry and disappointed by the things he doesn't recall or the things that no longer matter to him. I have to keep reminding myself of the man he used to be—the man he would be today if ischemic attacks had not affected his brain function. It isn't always easy, but it was what I signed on for when I said "in sickness and in health." If the situation was reversed, I know Charlie would be caring for me with everything he had to give.
Even now, if I am having a bad IBS day or my joints are aching, he is always ready and willing to wait on me, encourage me to "order out" or take a nap. The least I can do is keep any resentment I may feel for his inability to show emotion or his lack of memory under control.
By writing about the problems that occur on a daily basis I hope I can help another caregivers to feel they are not alone, and perhaps even give them a laugh at some of the craziness that goes on in the life of a caregiver. It helps me to stay positive and lighten up the situation in which I find myself.
Do I resent Charlie? Never. Do I get frustrated? Of course. But I will continue to care for him as long as I am physically and mentally able. That's what love is about. That's what caregiving is about.

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Thursday, April 16, 2015

Taking a Moment to Celebrate the Good Things about Caregiving

 I, like most caregivers, need a sounding board to let off steam. It's either sound off to some anonymous computer screen or sound off to our loved ones. I choose the computer, and you, as the lesser of two evils. But today I am going to talk about the good qualities that Charlie has retained, so far, through this trip down the lane to never-never-land. Charlie had a career as a fighter pilot, and a second career as a U.S. Customs Officer. Those careers demanded that he be focused, precise and in complete control of his surroundings.These traits are things that he tries desperately to hang on to—thus his obsession with his calendar. This sometimes drives me crazy, but it means his mind is still trying to perform as required. From the time he was a young boy, Charlie was engaged in hunting, fishing and wildlife conservation. These are habits that have continued into his receding years. He sits in his recliner, near a window overlooking a large open field surrounded by trees. He never fails to alert me to a passing herd of deer, a fox with its pup, a mother bear and two or three cubs, or the darting presence of numerous birds, most of which he can no longer identify. He would be devastated if he had to move to a place where wildlife observation could not be a part of his daily entertainment. Charlie is a good eater. He never complains about the meals I prepare, even though, on occasion, he probably should. Even the worst meal brings the comment, "Another gourmet meal," from him. It is a pleasure to cook for him. There are times when I wish he would tell me what he would like for dinner, but his Swiss cheese brain is no longer able to think of something different to eat, so when the question is raised, he is likely to tell me to, "Just order a pizza." The only problem is that his appetite is no longer as robust as it used to be. This means that we often eat leftovers for several days until a casserole or roast is gone. But I'm not complaining—especially when I read about caregivers who have meals thrown at them. Charlie has always been a helpmate, doing any chore that I set out for him with no complaints.He still tries to help me with chores. It's just that he is no longer physically or mentally able to carry out many of the things he used to routinely perform. I have had to get used to lugging out the trash, learn to put air in the tires and deal with other "man chores" on a regular basis.I grumble about it, but I know it's one more step towards getting used to not having a man around, when the day comes. I'm grateful Charlie is still able to enjoy reading. His days are consumed with reading up on health issues. He is certain everything he reads in health magazines and flyers is gospel and suggests we look into the latest fad. I have to use my wiles to convince him that every vitamin or natural herb recommended by some "doctor" who has only his own bank account in mind, may not be in his/our best interest. At times I even agree to order something he insists will help him, and then forget about it, as will he.  Until the day comes when Charlie no longer knows I am his wife, recognizes the children, or is able to enjoy the few things left to him in his limited physical and mental state, I will continue to love him and care for him. I may grumble and wail about his frailties, but I will carry on and thank all of you for listening and commiserating.

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Monday, April 13, 2015

Advance Directives to Hasten Death in the Event of Dementia

, Blogger
Diagnosed with Parkinson’s

Advance Directives to Hasten Death in the Event of Dementia

As an old man (86 next month) with Parkinson's, I want to maintain control over the way I die. Quality of life has always meant more to me than the length of life. My greatest fear is losing my cognitive function due to dementia, stroke—or whatever—and being unable to stop my medical care providers from putting my nearest and dearest through the emotional strain and financial drain of watching what's left of me slowly disintegrate.

Fortunately, a new way of dealing with this issue is being explored. Ethicists, lawyers, and older adults have begun a debate about whether someone can specify in an advance health directive that he or she wants to end their life by voluntarily stopping eating and drinking (VSED) if they lose their cognitive function.

How VSED works
My introduction to VSED came as I worked on a post about the death last June of John Rehm, the husband of NPR host Diane Rehm. His Parkinson's had progressed to the point where he was no longer able to use his arms or legs. He checked into a hospice and signed a paper with these instructions: no food or drink. He was kept sedated and died nine days later.

Talking with several friends, I learned they had been at the bedside of a friend who went through the same process in hospice. He suffered from kidney failure and didn't want dialysis.

The ethics of assisting in VSED
Hospice and palliative care organizations are debating the ethics of responding to patient requests for help in VSED deaths. Some view intentionally hastening death by fasting an act of suicide that should be discouraged. Others regard VSED as an ethically appropriate decision to forego unwanted life-prolonging measures...that forcing people to eat is as objectionable as imposing some unwanted medical treatment.

A discussion of the ethical and legal pros and cons of this option was presented in an excellent article in the Journal of Hospice and Palliative Nursing last year. That piece reviewed the case of a patient who requested hospice support for her decision to take the VSED exit.

The patient—a nurse who works for a home hospice agency—had a pelvic tumor that had metastasized throughout her abdomen. She was not in great pain or close to death. But she decided the burdens of living outweighed the benefits.

The hospice ethics committee reviewed clinical and legal opinions in the palliative and hospice care literature. They concluded that VSED was an option that should be available to any mentally competent, terminally ill and suffering patient. Here's a summary of that decision:

“After considering the prospective benefits and concerns about informing patients about this option, the committee concluded that, on balance, providing comprehensive information about VSED permits patients to make an informed decision that reflects their personal values and wishes.” The decision to stop eating and drinking was thought to be consistent with the ethical and legal right to forgo unwanted life-prolonging measures. And finally, it was thought that educating patients and families about "what to expect" as the VSED progresses, providing support as the patient dies, and providing a family with bereavement care after death were actions consistent with the hospice value of patient—and family—centered care. Their final report highlighted their concern about the absence of organizational procedures and guidelines to provide direction to clinicians, patients, family members and the hospice organization when future cases of requests for VSED support occurred.
The report also noted that as professional and lay journals run more stories about VSED experiences, future hospice patients may wish to know whether their local hospice has a VSED policy in order to make an informed choice about whether to begin a relationship with a particular hospice.

VSED and dementia
Many of us have advance directives attached to our wills declaring that—if we are terminally ill—we decline cardiopulmonary resuscitation, ventilator, feeding tube, and other life-sustaining devices and procedures.

But can we also specify that we want our healthcare proxy to arrange for VSED if we have dementia?
This issue was explored in a post, "Complexities of Choosing an End Game for Dementia," in the New York Times blog "The New Old Age." That piece noted that dementia—a terminal diagnosis—presents unique obstacles for those who want some control over the way they die. Dementia generally kills slowly, over years, and "there is often no plug to pull," says Dr. Stanley Terman, a psychiatrist who specializes in end-of-life decision-making. He estimates that several hundred people have requested copies of his Natural Dying Will, which we'll address a later post.

Even in the few states where physicians can legally prescribe lethal medication for the terminally ill, the laws require that patients be mentally competent and able to ingest those drugs themselves. But demented patients don't qualify for this so-called “death with dignity.”

These laws also require doctors to certify that death is expected to occur within six months. That's usually impossible to do in cases of Alzheimer's or some other dementia. Those same laws would also typically prevent those of us with Parkinson's from qualifying.

The question for proponents of VSED by advance directive is whether the practice can also provide a humane exit for people who, years later, no longer remember or understand why they wanted to use it. Proponents of the approach acknowledge that dementia patients and their health care proxies will face great controversy if they try to cut off food and drink; so will the professionals who care for them. From infancy, nourishment carries connotations that make stopping it feel different from rejecting medical machinery.

Questioning the legality of VSED
The legal status of VSED by advance directive remains untested.

A court case unfolding in British Columbia shows just how tricky these legal issues can be. The case involves an 83-year-old retired nurse with advanced Alzheimer's disease. Her advance directive specified "no nourishment or liquids" if she became incapacitated. When her husband and daughter attempted to honor her wishes, the care facility where she lives refused, sending the family to court.
Last February, a judge ruled that although a health care provider could legally honor such a directive, the feeding should continue in this case in part because the patient swallows food placed in her mouth. That constitutes consent, the judge ruled. The family has appealed.

If swallowing is all it takes to legally invalidate an advance directive, then few VSED directives will survive when challenged.

The moral and ethical aspects are even more dizzying. Can one's current and competent self make decisions on behalf of one's future demented self—who may find modest pleasure, years later in a life once deemed intolerable? What if that later self asks for, or points to, applesauce?

Clearly, we will see many more legal and ethical challenges to advance VSED directives for dementia.

Meanwhile, maybe I'll get a T-shirt that carries the motto of one of the proponents of these directives:

Sunday, April 12, 2015

How To Deal With Financially Freeloading Siblings

Family Financial Feuds: The Case of the "Borrowing" Sibling

Money fight

Watching those close to us age is stressful for everyone, but certain situations seem guaranteed to set family members against one another and start families unraveling at the seams.

And nothing causes more distrust and divisiveness among siblings than feeling they're not being treated equally or that one sibling is taking advantage of a parent at the others' expense. Case in point: Online support groups  are filled with discussions about difficult family situations involving money, uneven sharing of caregiving responsibilities, dishonesty, or all three.

When One Sibling Repeatedly Borrows Money From a Parent and Other Siblings Resent It

This story plays out in all sorts of ways, but the central player is an adult child (or cousin, or nephew...) in difficult straits who frequently goes to aging parents asking for "loans," help with living arrangements, or out and out handouts.

Take Bill, a less-than-successful 36-year-old who always seems to be moving home while he "gets on his feet again." While there, he eats his parents' food, drives their car, and always seems to need $40 to "tide him over." He was mom's baby, and she can't say no. Meanwhile older sister Kate is driving dad to doctor's appointments, bringing hot meals, and coming over on Saturdays to clean the bathroom. (Somehow, in this story, it's almost always a sibling who's not doing much of the caregiving who's asking for help; meanwhile, other sibs who are bearing the brunt of helping out, feel unrewarded for their loyalty.) Sound familiar?

I asked several experts in family dynamics for some suggestions in dealing with this situation, and got a lot of ideas. I also asked people whose stories followed this plotline to tell me what worked for them, and what just made tensions flare even more. Here are their thoughts, suggestions, and admonitions.

  • Recognize selfishness for what it is -- a focus on the self at the expense of others.
    Let's face it, psychologists say, people are wired differently, and some naturally think carefully about how their actions affect others -- while others don't. If you reflect back over your childhood, you may realize there's a pattern here -- self-obsession to the point of narcissism is often at the root of this kind of behavior, psychologists and other experts say. Recognizing that your sib falls into this category doesn't solve your problem, but it gives you some context, so you're not continually caught by surprise. And it allows you to stop expecting something different from him, and getting hurt when it doesn't happen.
  • Don't take selfishness personally.
    One thing experts suggest in all these types of scenarios is to depersonalize it as much as you can. While you certainly have every right to feel hurt and angry -- and to have thoughts such as "how could she?" -- your sibling is probably not preoccupied with the emotional side of things. She probably doesn't even fully recognize her actions as hurtful. Remember, to these folks, it's all about them; you're a bit player in their ongoing drama.
  • Desperation makes people do desperate things.
    Remind yourself that when people back themselves into a corner, they tend to come out swinging. If the problem child in your family wasn't like this in the past, it may be that personal troubles have overridden her better judgment. That's not an excuse -- remember the old saying about hard times showing people's true colors. At the same time, it's a good strategy for managing your own feelings of betrayal to point out to yourself that it's not your sibling's best self you're dealing with.
  • Recognize if there's alcohol, drugs, gambling, or another addiction involved
    One useful strategy comes from family therapists who deal with addiction: Try to separate the addiction from the person. For example, counselors might tell you to picture the gambling addiction or acoholism as a monster riding on your family member's shoulder, controlling his or her actions. This is not to get your family member off the hook -- but it can be very comforting when dealing with feelings like, "My baby sister used to be so sweet; what happened?"
  • Self justification is a powerful thing -- don't try to fight it. The adult child who begs, borrows, or even steals from a parent or other family member usually surrounds himself with an elaborate scheme of self-justification. Attempts to break through this bubble of victimization and get him to admit he's behaved badly, or to apologize, are likely to be met with complete failure. The reason? To take such an extreme step in the first place, your sibling had to talk himself into feeling his actions were justified. Most often, some old resentment, mistrust, or dissatisfaction that's festered for years is the foundation on which the self justification is built. Do any of these sound familiar?

Once you've accepted that your sibling is mired in a quicksand of self-justification, don't try to break through it. It will just be an exhausting and pointless waste of time and energy, because these types of justifications tend to multiply like Gorgon's heads.

What do you do? This is where it gets tricky, because unless your sibling (or cousin, or nephew...) out-and-out stole or defrauded your parents, you have to recognize that it's your parents' money, not yours, to do with what they will. But there are still a number of strategies that others have found effective.

1. Separate the personal and the practical. Recognize that to your sibling this is a financial matter -- he needed money, felt he was entitled (or constructed a new reality to make himself feel entitled) and took it. You have all sorts of emotional issues of trust, respect, and loyalty mixed up in the situation, but your sibling may not see any of this. So depersonalize the situation as much as you can and treat it like any other business deal. Do your parents feel resentful, or do they feel it was a fair deal? Was the money a loan or a gift? If it's a loan, on what terms will it be repaid?

2. Change what you can change -- your own actions -- and leave others' actions to them. What often complicates these situations is resentment, experts say; the sibling who's behaving honorably and responsibly resents the contrast between her role and that of the freeloading sib. Unfortunately, the hard reality is that you can only change yourself, not others. And it's quite possible that your resentment is fueled by your own panic. In other words, you're burdened beyond what you can handle, and desperately wish your sib would help out.

But let's face it: That's not going to happen. So where can you get some help? How can you reduce your load? Look for help from other sources -- neighbors, friends, other family members, your parents' church. Talk to your parents and sibling(s) and explain that you're shouldering more than you can manage, and have to step back a bit. Then wait and see - maybe faced with a need, your parents will demand that slacker sib step up. If not, their response is not up to you, but you can help your parents look for other solutions.

3. Focus on long-term rather than short-term fairness. You may not be able to make the situation fair now, but it can help to think of ways to make things better in the future. Many siblings have had good luck bringing loans or gifts to the attention of the executor of a will, and getting the money treated as an "advance" on that sibling's inheritance. In other words, if your sister "borrowed" $20,000 from your parents for the down payment on a house, her share of the inheritance is $20,000 less than yours. You may need the help of an estate attorney to help you and your family sort this all out, but it's probably worth it to get the issue out in the open.

No question, we've only touched the surface of this important topic. More to come, and please feel free to describe your experiences and solutions.

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