Alzheimer’s disease

Start your retirement – start your job as a family caregiver.

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You’ve worked your entire life; you’ve lined up your retirement leisure activities; you’re ready to start the first day of the rest of your life, but instead you start a new job: caregiver to your sibling, spouse, parent, or other family member.

Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver.  It doesn’t work or it only works until the caregiver runs out of steam.  One way or another, your retirement years sure don’t resemble what you envisioned.

The CNN article, As baby boomers retire, a focus on caregivers, paints a frightening picture but one that is painfully accurate.  The highlighted caregiver, Felicia Hudson, said she takes comfort in the following sentiment:

Circumstances do not cause anger, nervousness, worry or depression; it is how we handle situations that allow these adverse moods.

I agree with the above sentiment to a very small degree because let’s face it, the nitty-gritty of a caregiver’s life is filled with anger-inducing depressive circumstances about which I don’t think caregivers should beat themselves up trying to handle with a happy face and a positive attitude.  It just doesn’t work that well in the long-term.  It’s a well-known fact, and one that is always talked about by the Alzheimer’s Association, that caregivers don’t take care of themselves because they don’t know how, or don’t have the support, to stop trying to do all of their life’s jobs by themselves.

“I’m obligated because my parents took great care of me, and now it’s time for me to take care of them.” 

or

“For better or worse means taking care of my spouse, even though she’s getting the better of me, and I’m getting worse and worse.”

The problem with the above sentiments is that oftentimes the adult child or spouse start to resent the person for whom they are providing care.  It’s like going to a job you hate but being held to an unbreakable employment contract; your employer is a loved one with a life-altering or terminal illness; and you’re not getting paid.  “Taking care of a loved one in need is reward enough.”  No, it’s not.

I’m not bitter, I’m simply realistic.  Caregiving is one of the most difficult jobs any of us will hold and we can’t do it all by ourselves.  My blog article, Caregiving: The Ultimate Team Sport, encourages each person in a family caregiving situation to create a team of co-caregivers to more effectively get the job done.  And please take a look at the other articles found in that same category of Caregiving.   I hope you will find encouragement in those articles – some based on my own experience, and some from other caregivers’ shared experiences – especially when a positive attitude and a happy face just isn’t working for you.

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Making Memory Books for People with Alzheimer’s Disease or Dementia.

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Making Memory Books for People with Alzheimer’s Disease or Dementia..

This post, from a wonderful Blog about caregiving, http://www.letstalkaboutfamily.wordpress.com provides an excellent idea.  It’s never too late to start this project for a loved one with Alzheimer’s or other dementia.

Alzheimer’s and other dementia: Advance Directives

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Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.

Auguste Deter. Alois Alzheimer's patient in No...
Image via Wikipedia of a patient for whom Dr. Alzheimer provided care. This patient became the model for diagnosing Alzheimer's dementia.

My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved.  My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died.  Think of an Advanced Directive or Living Will as a gift to your loved ones.  It certainly was a gift to my siblings and me.

An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia.  This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness.  This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness.  Bravo Washington State!!!

Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives.  The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.

What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?

Potential issues that might be addressed are preferences regarding:

  • care in and outside of the home;
  • financing of said care;
  • caregiver choices;
  • involuntary commitment;
  • consent to participation in drug trials;
  • suspension of driving privileges; and
  • any future intimate relationships.

To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816.  At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia.  Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver. 

That’s a priceless gift to be sure.

Honesty is NOT always the best policy.

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Bear with me – don’t judge me quite yet.

You are not destined for Alcatraz just because of a little well-placed dishonesty.

If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies?  Do you stretch the truth a bit in order to keep the peace?  Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life?  Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.

How do you jump over the hurdles of negotiating with a loved one for whom you provide care?  Here are a few examples that come to mind.

Scenario one: the need to get creative in order to leave the house for personal business.  For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours.  Then make sure you’re back on time!  If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed.  Knowing that you’re going to a support group only confirms how miserable she’s made your life. Read the rest of this entry »

Caregiver Guilt

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Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.

The local caregiver.

Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.

Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.

At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.

Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.

Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life.  No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.

The long-distance caregiver.

One of many walks my father and I took around his facility

My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.

I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience.  I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.

As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be.  Cut yourself some slack and don’t be so hard on yourself.

Do your best – that’s all that is required.