The Zen of Caregiving

Hospicare Helps Us at the End of Life

Adrian died on May 24, 2011 at home.  He died peacefully without pain, thanks to Hospicare.  Once this wonderful organization took charge, I felt that we were cradled in their arms.  They were available 24/7, guided us on pain medication, talked to doctors so that we didn't have to, and provided whatever we needed such as oxygen, hospital bed, air mattress, etc. 

I will be going to bereavement support groups sponsored by Hospicare, and they have counselors available to me as well.  In every way, they support us at the end of life, caring for the dying as well as the family left behind.

Adrian went downhill both physically and mentally over the past six months, and caring for him was very stressful.  I was not able to keep up with this blog, but I want all of you out there who are caregivers to know I am thinking of you.

Mixed with my grief and sadness is relief, as anyone who is or has been a caregiver will understand.  Caregiving takes such a tremendous toll on our bodies and our hearts.

If your loved one is near the end, in pain and suffering, think of calling your local Hospicare.  I was so glad I did.

 

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.

Holiday Respite for Caregivers

It's important for caregivers to get some respite  on holidays.  We're spending ours with one of Adrian's sons and his family, so I am not the one "on call" 24 hours a day.  Not only do I get some time off, but I get to see that I am really NOT indispensable. 

It's easy to get over-stressed on the holidays by adding a lot of cooking and baking chores to an already-filled day.  Or driving long distances while stressed. 

This year I decided to drive more slowly, to stop more often, and to actually look at the scenery around me.  Much of it was a snow-covered landscape, which is beautiful and lovely to see when it isn't in your face or on the roads.

I arrived at our son's house feeling rested rather than over-stressed.  That's a good way to start the holiday!

P.S.  I did not bake the cookies I'd planned to.  And it was OK.

Same Caregiving, Different Attitude Changes All

I have been doing whatever is necessary to give Adrian the help he needs because of his dementia and physical disabilities. A while ago I overheard him tell a friend, "Lynne does everything a good wife would do."

But he also added, "I don't think caregiving is the work she wants to do."

Of course he thought that, because it was what I thought also.  While I did what was necessary, I did it as if I were bearing a huge burden. 

Recently Adrian and I talked about the changes in me since I've been reading Dr. Richard Carlson's book, Stop Thinking and Start Living. With my new attitude, I am a much happier caregiver.  Adrian has noticed it as well.

"I thought it was phony at first," he said, "but then after it persisted, I realized you were sincere." 

Not only am I sincere, I am more relaxed and peaceful about all the stressors in my life! 

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.

At last, Caregiver Respite Arrives

For over four weeks I've been dealing with Adrian's bike accident.  While he is much recuperated, he is still  more frail and slower than he was before the accident.  Yet he still wanted to make the trip alone to California to spend a week with his son and family.

Hurray! 

Sorry, it's just that I don't get relief that often and this time I really need it.  (Caregivers always need the respite whenever they can get it.)

Adrian was very nervous for the last two days, so we packed early in order to help him feel prepared.  Of course, he kept wanting to review everything, to know what I'd put in his backpack and to repack it. 

He practiced using his cellphone, but I assured him that he didn't need to use it if he forgot how to.  I stayed with him until he got on the plane in Ithaca.  His son will be there when he gets off the plane in San Francisco.  The airline is supposed to get him from one gate to the next in Philadelphia.

Some people would say he shouldn't make this trip alone, that he is too frail and forgetful to handle it.  I would agree if Adrian said he did not want to do it.  But he does.  He flies alone a couple times a year and has always managed fine.  It is just getting harder each time.

This may be the last.  I will be sure to enjoy my week home alone.

When the Level of Care Increases

Three weeks ago Adrian had an accident with his bicycle and fell onto it, cutting his head, hurting his body, and knocking his glasses off.  He managed to walk his bike home, but when I saw him, he and the bike were covered in blood.

I'm not very good in emergencies, and panicked when we could not get the bleeding over his eye to stop.  I called a neighbor for help getting to the emergency room, and she told me to call 911, which I did.  The EMTs arrived quickly and said I had done the right thing.  They couldn't get the bleeding to stop either.

The emergency room was very busy, and as soon as they got OK results from a cat scan of Adrian's head, they released him.  He was dizzy and nauseous, and soon fell again in the bathroom.  Two days later he fell again. 

He must have torn a ligament in his elbow and either cracked a rib or done something else which caused pain behind his shoulder blade.  For three weeks now he's been on pain pills to get through the evening and night.  I have to get up periodically to get him a pill or help him get in and out of bed.  He can't wear pullover shirts any more. 

The level of care Adrian required since the accident has increased greatly, and that combined with sleep deprivation has made me cranky at times.  It is both easier and harder to do the extra caregiving.  Easier because I can see he's in pain and the physical things he needs me to do are obvious.  Harder because the extra work and lack of sleep have taken me out of my usual routine. 

Adrian is supposed to visit a son in California soon, and I just hope he makes it.  I can use the rest.

Finding Peace by Changing Our Thoughts

A book I read recently has changed the whole way I am approaching my life as the caregiver for a husband with Alzheimer's.  Richard Carlson's STOP THINKING AND START LIVING has made a profound impact on every aspect of my days and nights.  He encouraged me to make a commitment to be happy no matter what.

Interestingly, I have a friend who has managed to be happy her whole life, even though she's been through some awful things: having her husband join a cult; two divorces; being mugged; losing her job.  She doesn't have a lot of money, but she has a joy for life that is unmatchable.  I had never thought that I could possibly be like that.

Here is a list I made for myself from Carlson's book:

DON'T HURRY - SLOW DOWN

BREATHE

LISTEN TO THE QUIET

FOCUS ON ENJOYMENT

THE PAST IS OVER (INCLUDING THE AWFUL THING THAT JUST HAPPENED 5 MINUTES AGO)

ALL WORRY IS A WASTE OF TIME AND EFFORT

I AM THE THINKER OF MY THOUGHTS

HAPPINESS IS A FEELING, NOT AN OUTCOME OF EVENTS

THE FUTURE AND THE PAST ARE JUST THOUGHTS

LIFE IS RIGHT NOW

LET IT GO

PRACTICE

Bipolar Dementia Art Chronicles - 38

(continued)

When I got to Dad’s room later, he was glad to see me as always.

“You’re the only one who comes to see me,” he said.  “Is that because of where we live?”

“Right, Dad.  I live ten minutes away, but the others are a few hours at least.”

“I see.”

“Bobby was here two weeks ago, and Adrian comes by often.”

“Not that often.”

“He comes a couple times a week to play pool with you.”

“I guess he does, and I appreciate it, too.”

As I walked away from Alterra after dropping Dad off at the dining room, I realized that both Dad and Elsie wanted more from me than I could possibly give them.

Later that night Dad called me at 9:15.  “I was asleep,” he said, “but woke up and realized that gal who was supposed to come today never came.”

“Dad, I saw you this afternoon.”

“I must be confused.  I don’t have any gal.  I’m sorry I woke you up.”

“You didn’t wake me, Dad.  You must have had a dream.  Call me any time.”

“Will you see me or call me tomorrow?”

“Yes, Dad.”

“I feel better.”

“OK, go back to sleep.”

(from The Bipolar Dementia Art Chronicles)