The Zen of Caregiving

Listen to this Song to Help Raise Money for Alzheimer's

Liz Queler has recorded this song to help raise money for Alzheimer's, which has afflicted her father.  It's a great song and a worthy cause, as any of us know who have had loved ones with the disease.  Please watch it:  Hallelujah (sing for the hope) - song for Alzheimer's.

Watch this Video on Alzheimer's

I am still hearing from people even though I've stopped updating this blog.  Someone recently sent me the link to a video that is very powerful.  I hope you'll watch it:  One Thing You Don't Want to Forget.

It is over a year since Adrian died, and I am going on with my life, but I think about him every day.  It feels strange to be going through each day without him. 

People say I'm doing well, and I guess I am, but it doesn't change the loss.

When the Caregiver Has A Mental Illness

I am bipolar, and have managed fairly well over the years.  But the stress of caring for a husband with Alzheimer's may be the straw that broke the camel's back.  When I am feeling "up" I find myself filled with compassion, patience and kindness.  I don't mind jumping up from my dinner 10 times to help Adrian find his glasses, fix his hearing aids, or bring him some hot sauce. 

When I am down, however, I can resent having to jump up even once.  Small things can cause me to lose patience.  And when he sees that I'm upset, that just gets him upset, and he is unable to handle it.  It's frightening for him because he fears I will abandon him.

The most important thing I've learned as we've gone through many of these cycles, is not to believe what I'm thinking when I'm down.  I have to remember that "this too shall pass," and do the best I can to nurture myself.

I also have to get emotional support elsewhere, because Adrian is just not capable of it at this stage in his illness.  I know he loves me and wants the best for me.  I love him and want the best for him.  We are two people trying hard to make our life together work.

Risks of Surgery for Patients with Alzheimer's or Dementia

We are considering surgery for my husband Adrian to repair compression on his spinal cord in the neck area.  His brother-in-law and nephew had the same operation years ago, very successfully.  If Adrian doesn't get it, he will gradually (no one can predict how long) lose the ability to move his  arms and legs.  He is also in more danger of real harm when falling.

What I have heard and read is that any kind of surgery under anasthesia can cause worsening dementia in the elderly.  Adrian and I are frightened of this possible outcome, but at the same time, I would hate to seem him lose any more mobility. 

We've gotten a lot of information from doctors lately, but unless you have a medical degree yourself, you can't really understand the situation accurately.  That means you have to rely on your instincts or a doctor you trust.  The doctor we trust says there are risks either way and that she can't make the decision for us. 

The worst part for Adrian is that he can't keep all the data in his head in order to sort it out.  So he has to rely on the people around him.  I worry about letting him down, either way.

We have one more surgeon to talk to, and we can continue to get third and fourth opinions.  But I don't think we'll really get any more understanding.

Keeping the Body Alive when the Mind is Long Gone

In the early stages of Alzheimer's or dementia, most people say they want to be able to end their lives before they stop recognizing their loved ones.  And many would rather die sooner than have their spouse or child suffer the stress and exhaustion of caregiving for years and years.  But our laws and health-care system ignore these desires.

A recent article in the New York Times Magazine told one family's version of this tragedy.  In "My Father's Broken Heart" by Katy Butler, Butler's father rejects a pacemaker when he is rational enough to do so.  Two years' later, with dementia advancing, his wife had to make a quick decision, and was convinced by the cardiac surgeon to allow it.  

That pacemaker kept Butler's father alive, but the increased caregiving burden took years from her mother's life.  Reading this article, I was struck by the similarities in coping mechanisms used by Butler's mother and myself:  meditating and reading books on how to have more patience. 

I'm glad I've taken up meditation and love the books I'm reading on how to be more patient and live in the moment.  But I do not want to give up my last good years to caregiving the way Butler's mother did.

Surviving a Bad Patch as an Alzeimer's Caregiver

I am not a perfect caregiver.  Far from it!  Being bipolar as well, I have natural mood swings that sometimes make it hard to be loving and patient. 

Last week was horrible.  I took every complaint of Adrian's personally as a critique of me.  He seemed to take everything I said as a critique of him.  We were not communicating effectively at all!

At one point I lost it and started yelling at him, "Leave me alone.  Just go away and do something, but get out of my studio!"  He could not stand my yelling at him and kept saying, "Don't do this" and "I can't stand it."

Boy, did I feel like a heartless failure after that scene.  I finally calmed down enough to be able to go to him and make peace, but it poisoned the air between us for several days. Only this morning was I able to tell him in a kind and loving voice that I thought we needed to find a better way to be together.

When I am calm and loving and peaceful with him, he reacts much better.  Duh! 

The important thing to remember as caregivers is that we can get through these bad patches, and not to beat ourselves up about them.  We are doing the best we can.

Top 50 Online Resources for Families Coping with Alzheimer's

This blog was recently listed in the Top 50 Online Resources for Families Coping with Alzheimer's.  The first twelve on the list are personal stories, like mine, from children or spouses.  That's where you'll find the heart and soul of the daily struggle.

The next section of the list deals with information about Alzheimer's.  Some of the organizations on this list that I have found helpful are the Alzheimer's Association, the Mayo Clinic, and the Alzheimer's Reading Room.  One I hadn't seen before is Coping with Daily Life and Alzheimer's Disease, which is from Web.md.

The last section is on survival skills for the caregiver.  One of my favorites is Ten Tips For Communicating with a Person with Dementia.  This is available from caregiver.org.  All in all, this top 50 list has a number of useful sites, and I invite you to browse when you have the time or just need another point of view.

When is Home Care the Best Option for Your Loved One? by Alexis Bonari

(Alexis Bonari is our guest blogger today--see her bio below.)

The decision to put a beloved spouse or parent in a nursing care facility is often one steeped in guilt and indecision. Everyone has heard the stories of elder abuse and neglect uncovered perpetrated by some nursing homes. Nobody wants to subject their loved one to loneliness or mistreatment. 

Arguments for a nursing care facility.

On the flip side, caring for a family member with a serious disorder like Alzheimer's or Parkinson's can be more than the caregiver is capable of handling.  This point is often reached when the caregiver simply does not possess enough medical training to attend to their needs or is too frail to provide the proper level of care.  Some caregivers simply can't leave their job or other family obligations to care for an aging parent full-time.

When relatives and friends can no longer care for the individual's needs, the most logical course of action is to enlist the help of a care facility.  Inadequate care can lead to a severely diminished standard of living. 

Planning ahead for home care.

If home care is the most desirable option, planning ahead can make all the difference.  Taking measures like adding a long term care rider onto an existing life insurance policy, and discussing desired care strategies before illness sets in makes the decision-making process less painful for everyone. 

Aid for caregivers.

As the cost of nursing home care climbs, respite care and nursing help within the home are becoming more popular.  A stressed caregiver can make use of these services so that they can emotionally re-group.

Essentially, the questions of when and whether to use a nursing care facility must be answered on a case-by-case basis.  The best decision is the one that allows the loved one to have the best care, the most autonomy, and is closest to their stated desires.  On the same note, family members should not be vilified for suggesting a move to an assisted living home or nursing care facility. 

Bio: Alexis Bonari is a freelance writer and blog junkie. She is currently a resident blogger at onlinedegrees.org, researching various degree programs. In her spare time, she enjoys square-foot gardening, swimming, and avoiding her laptop.

When the Doctor Becomes a Caregiver

Dr. Arthur Kleinman sounds like he was a compassionate man long before his wife was stricken with Alzheimer's disease. Back in 1966 as a visiting medical student, he was appalled at a neurologist's lack of "caregiving" in treating a young couple.  Kleinman brought the issue up with the physician, who then re-met with the couple to offer more comprehensive advice, "including empathic suggestions for rehabilitation, family counseling, and social-work assistance."

Now Dr. Kleinman has to help his once-brilliant wife negotiate a path through the living-room, find the food and utensils placed before her, and other caregiving tasks many have faced when living with a spouse who has Alzheimer's. 

You'll want to read Dr. Kleinman's own account of his experience, written up in an article in the Harvard Magazine.  It is a touching story, with much insight.  Also read the comments, especially those of Pam Mack, for another point of view.

Maybe I should have watched a movie.

The great thing about movies, and books too, when they're working for you, is that they take you into a different world.  That means you're out of this one.

Oh, how I long to be out of this one sometimes, like now, when I'm thinking about how I don't know what to do about being depressed about Adrian having Alzheimer's and our lives together.  Our lives that might be physically together, but are separate lonely non-encounters where neither one of us wants to be there.

I'm sitting here crying on a Sunday afternoon, weeping because I don't have the strength.  Weeping because meditation isn't enough to get me through this.  Weeping because I should have watched a movie instead of thinking about this shit.