Trust After


A phrase has stuck with me for the last few days- “Sometimes we have to take a leap of faith and trust after.” Learning to trust our basic instincts, I believe, has been conditioned out of many of us. I struggle everyday to pay attention to the thoughts that pop into my head, and act on many of them. This is new for me, and maybe for many caregivers. We’re often the cautious one in the family. We listen to our head and not our hearts so much. We’re so busy with what we think is the most important of things to get done, that we leave filling the “vase of our soul” till last. And, surprise, it’s often left empty, again. Maybe tomorrow you’ll get to it. Metaphorically, our flowers whither and, eventually, die. Our health then suffers and depression often sets in. If, instead, we listen to our heart (our essence, really) as well as our head, it will tell us what we need to fulfill ourselves and how to best take care of the people we love.

If you look at your caregiving as a gift to another person, it doesn’t feel like a sacrifice. You will know that while you are giving you are building a better self. This is not selfish or self centered. Because of a shift in your outlook, suddenly life is better for everyone around you. How could that be wrong? “It’s better to give than to receive.” We all know this phrase and we know it feels good to give. But, what if “it’s better” means better for your health, for your happiness, for accomplishing the mission that’s yours only in this life? “It’s better” because it brings joy to you and gives the person in your charge, the one who’s in this dance with you, what they need to fulfill their destiny. There’s growth for you both here, really great growth. If you can go about your caregiving with creativity and grace, then, I would say, you’ll come away from it with peace. With no regrets. And that’s lovely!

There’s a wonderful movie that I highly recommend: ENCHANTED APRIL. I watched it on Netflix recently. It has caused me to notice “lovely” when I see it and want more of it in my life.

So…what does a leap of faith look like? You start by stepping away from yourself as you go about your day. Quietly and mentally observe yourself, as if you were watching a movie. Would you admire that person? Would you want to be like that person if you were in their shoes? Can you see where there might be room for improvement? How could the main character go through their days with more grace and creativity? What would help them improve their situation?

Take the leap first, start by spoiling yourself a little. Be creative, think about where the opportunity lies for you to steal a few minutes for yourself. It might be when your loved one is napping. Or, you might plan to take half the time you usually take for a certain task so you can squeeze in a half hour of reading or watching a program you’ve recorded. You might take 15 minutes to prepare a special snack for yourself, one that you’ve specifically planned for while doing your usual shopping. Exercise. Wherever your mind takes you when you ask yourself, “what would I do for myself if I had the time?” MAKE that happen like you make everything else that you think is important happen. I promise, do something for yourself everyday and it will lighten your heart and your load. You will walk with more grace in your step, and be happier for it. You will feel more powerful. That power will give you more strength. You will see the big picture and continue to observe yourself from afar. You will know that you’ve elevated yourself to a new level in life. You’ll be wiser and not need to dwell on the problems. You’ll just handle them as they come, one at a time because you know you have all the tools (ideas) you need. Creativity and grace.

This gives you the “Trust After.” Baby steps were easy to create when you looked at yourself from a distance. You trust yourself. Lovely!

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Through Someone Else’s Eyes


Yesterday I went for a blood test and from 4 stories up in a building looking down I watched – voyeur that I’ve become – a woman who was preparing to take someone out of a car. There was the oh-so-familiar wheelchair pulled up to the front passenger side. The woman looked at least middle aged, a little heavy and strong with good shoulders. I was concerned about how she was going to maneuver the person out of the car, hopefully she knew how to protect her own back. She stood patiently as, I assume, the person in the car prepared themselves. I was curious, is it a man (a husband like mine), a woman, a mother maybe or a handicapped child? Suddenly the caregiver bent over, reached into the car, pulled out and plopped a very old and sickly looking woman down into the wheel chair. Plunk! One fell swoop. It was startling, especially for the old lady, poor thing. Even from 4 stories up I could see that the old woman had to recover herself, gather her breath.

The caregiver wasn’t doing this out of love. She seemed to be a hired assistant who was working very hard herself. Even if the little old lady only weighed 90 pounds, do you know what it takes to reach into a car and use every muscle in your body to pull someone out? And oh, yes, I think she may have hit the woman’s head on the doorframe as she pulled her out. Now that I recall, the old woman was touching her forehead with her right hand. There was no apparent concern by the caregiver, not a touch on the shoulder or a stoop down to address her pain in the head. I felt sorry for both actually.

My sister works in a nursing home. I know something about how it must be caring for people physically day after day because you need the paycheck. It’s very tough on the body and frustrating because you’re always tired. Love or at least compassion for the person you’re caring for is crucial. You’ve got to be intelligent and thoughtful; find efficient ways of doing things. You might seek professional help or ask questions of nurses in the hospital: “When you were trained did they tell you to lift from a certain place or how did they tell you to do x-y-z?” Don’t be shy. Trained people are usually happy to answer your questions. People like to share what they know. I would have saved a lot of strain on my back had I known that I needed to be using my stomach muscles as well as my back and leg muscles when lifting my husband. I learned that after-the-fact from my chiropractor.

As I watched that scene I was thinking to myself, you can’t be sure when your time comes if there’s going to be someone who can keep their cool and is strong, caring, patient and intelligent enough to find a way to make things go easily for both of you. Ideally there would be enough money (LTC insurance, if necessary) so the person who loves you can afford to be there while the hired person does the physically hard part when necessary.

Watching the scene was surreal in that it told it’s own story of what is such a common occurrence now. So many aging people need a lot of help. It just occurred to me that maybe the patient was nasty, rude or bigoted. Karma? This is the advantage of the voyeur, you get to make up your own version of the story. My sister tells me that some of the words that come from people with dementia are very hurtful. She heard one old woman say to her nurse while laughing, “Look at you with your false teeth and wrinkly face!” Do you think your compassion would wane after a few of those experiences?”

It’s so nice to have the time to observe humanity now, like when I watch the people who live in the tower next to my apartment complex. There’s a huge parking lot. I stand at my kitchen window doing dishes and see people going to their cars – singles carrying too many things like I do – couples walking together hand in hand, or not. Kids playing ball sometimes. My favorite was a young woman walking – waltzing actually – with her baby attached by a front pack to her chest, she must have been singing to the baby while waltzing in the fresh air for both their sakes…so sweet. I feel like Jimmy Stewart in the movie Rear Window and a little guilty at the same time, not enough to stop though. Oh, yes, the couple who had walked together every weekday morning to her car – he opened the car door for her and handed her coffee when she was in, then closed the door. He didn’t kiss her goodbye. Interesting. Now I see her walking alone carrying her own coffee. Why doesn’t he walk with her anymore? Was she demanding that he walk her to the car? Were there better days when he enjoyed this routine and did kiss her? Human behavior is fascinating.

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Ground Rules to keep your spirits up.


Lets talk about how you can take good care of yourself while you’re taking care of someone else. As a basis for everyday living there are six things I think will keep you in good spirits and bring you back to center consistently. As you read my stories, you’ll see that in the beginning I did few of these things I’m suggesting. My husband was extremely stressful by nature and almost impossible to deal with at times. I didn’t have anyone to make suggestions. I had to reach bottom sometimes before I figured out how to deal. Once I discovered a few good ideas, even if I couldn’t do them all each day or any of them some days, at least I knew what I should be doing and I squeezed them in as I could. Nothing stays the same for very long with your patient so it’s a good idea to have these rules in mind.

I’m assuming you get up at a similar time each morning and go to bed at a reasonable time each night. If this is not the case, and I surely know how your sleep can be less than restful, please send me a message and we’ll discuss how some changes might be made to help you. With that said, these are the ground rules:

1. Get up when you wake up naturally and start your day early if you can. You’ll feel better during the day if you don’t go back to sleep for “just another twenty minutes.” And, if the house is still quiet you can get some things done early, hopefully, something just for you (I love to read early in the morning with my coffee).

2. Have a positive phrase you say to yourself each morning as you rise. This sets the tone for the day. It’s amazing how things can go the way you expect them to, in “either” direction. So make it good and positive. Don’t laugh, I still do this; I look toward my window where the light is coming through as the sun is coming up and mentally say, “Good morning Sunshine.” My bedroom is on the second floor and I see palm trees outside the window. I make a mental note of how happy I am to live where I do and have my health. You’ll figure out your own pleasant phase. Just start the day on a positive, hopeful note.

3. If you can, take a short nap midday. If you meditate, that’s even better. Maybe your patient takes a nap and you can too. You need that if you’re getting up at your natural wake-up time. Our bodies need periodic rest. I love the custom in many other countries where the afternoon nap is common.

I learned to meditate after my husband passed away. I do so wish I had known what I know now. My stress relieving abilities have greatly increased. I’ll be sharing them with you through my stories.

4. Plan to do something nice for yourself. I remember being tired and not interested in anything that meant more work. My husband was hardly eating anything for the last couple of years and his food needs were changing constantly because the consistency of the food was critical to his ability to swallow. It occurred to me, as I was looking at a magazine in a doctor’s office, that there were many lovely, simple meals I could make for myself that I would really enjoy and feel like I was having a treat. I started putting things on my shopping list like salami, brie, olives, arugula and heirloom tomatoes. We had always eaten well, my husband was a terrific cook. Why had I stopped enjoying my meals? I started drinking a glass of red wine with my dinner, too. That is a habit that continues today.

Your special something you do for yourself may be different. I have a friend who was taking care of his wife who had Lou Gehrig’s disease. They had been married for over 50 years. Trying to figure out how to help him I asked, “What have you always thought you’d like to do, but have never done?” He said he had always had an interest in astronomy. What a pleasant surprise! We discussed how he could get on the computer or start reading books about the stars. He needed a new hobby, golf was just about impossible under the circumstances and he wasn’t enjoying it as much as he used to. Next time I saw him I asked if he had gotten into astronomy. To my surprise, he had bought a telescope and put it in their upstairs guest room. That’s a special something he can look forward to every night!

5. You need exercise. No matter what you’ve done in the past, you’ve got to do something to keep yourself healthy. About 6 years before my husband passed away, I had started walking. He was healthy then. I had read in a magazine that if you walk 10 miles a week, you will lose 30 pounds in a year. That’s exactly what I needed to lose. So I was already walking every other day when he became ill. Over the next couple of years, things got to the point where I could leave him alone for less and less time. Eventually, and because he wanted me near him constantly, we agreed that I would walk for 10 minutes (on the street in front of our house) and come back into the house, kiss him so he would know I was back (he was blind and nearly deaf) and go out again for 10 more minutes, then do that again. That way I got 30 minutes of fast walking done every other day. I, also, had started to do gentle yoga a few years before the walking and that I could do in the living room when I got him settled into his favorite chair with a TV program on.

Be creative, you need your health now and later in life.

6. Find something you can do together. My friend, who had Alzheimer’s disease, who’s care I managed for ten years, loved politics and so did I, in those days. I made sure I spent time with her every Sunday at her assisted living home. I was still working and my husband was well in those days. We would watch the Sunday talk shows and she would throw her slippers at the television. It was fun to have something in common like that. It kept her mind sharper, too.
My husband liked crime shows, I didn’t even want to look at the screen. We plugged a headset into the television so I couldn’t hear it and I read my books with one hand while he held the other and watched his shows. Love finds a way, he would say.

So… 1. Wake up at your natural hour
2. say “good morning” to the sun
3. take a nap/meditate
4. do something nice for yourself each day
5. exercise at least every other day
6. find something you can do together

In case I made it sound easy, know that I had to fight for myself all the way. I’m not a martyr and I hope you’re not either. You’re a giving, responsible person who takes on tasks only the strong can survive. Be proud that you do it with grace and love.

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Sleep Deprivation

sleep deprivation

In late June 2008 my husband’s doctors still couldn’t find a way to get his anxiety level down to a point where he could sleep at night. I’m not sure he ever slept during that time. I know some will think I’m stretching the truth, but I rarely got more than twenty minutes sleep at a time from late April until the fourth of July. He needed company. My husband’s psychiatrist tried several medications but was not able to figure out a solution to our sleeping problem. He said the next step was to go to a psychiatric hospital. That my husband would be under 24 hour observation and a specialist would figure out how to get him to sleep. I was desperate.

We went to the hospital (a lock down unit) and prepared for him to check in. The process was lengthy. It took hours to go through the paperwork and interviews. By the time we were done with admission my husband didn’t want to check in anymore. He said he was tired and would be more comfortable if we came back tomorrow. You can be sure I was afraid that he might not want to return the next day. He was a very clever man. He could be trying to trick me. But, that didn’t happen. He was reluctant, but wanted to find a way to sleep.

Upon arrival the next day, I asked the staff to say that the rules were that I could not stay past 8 PM or arrive before 8 AM. I was determined to get sleep now. The doctor came in and discussed our case with us. He had prescribed a medication for sleep. That day I arranged for 24 hour personal attendants and taught them everything I could about how to take care of his every need. Believe me, the people that knew us well could tell you what it took to take care of this blind, deaf, impatient man who was used to my being there for anything he needed. I wanted him to be comfortable and cared for so we would have the best chance of this working.

It was hard to leave him that night, but I did. I had the deepest nights sleep of my life. It was July 3, 2008, a night for which I shall forever be grateful. Of course, the phone rang in the morning about 7 am. He had not slept. He said the attendant was behaving badly and when was I coming back? I took a shower, got ready and drove to the hospital thinking about how dangerous it was for me to be driving.

The next day went by with visits from one or another nurse on duty and from the doctor. Tonight he would try another sleep medication. Of course, my husband was complaining so the doctor told him that he could go home as soon as he slept through the night. Well, that did it. Mind over matter? The meds worked, he slept through the 4th of July fireworks, and conned an attendant to go to a phone and call me at 6 AM the next morning. At least I had two nights sleep and the promise of more to come.

After that things were “better” in the sleep department. We saw his psychiatrist every week for a while and then less often, until my husband’s passing in March 2010. I will always be so grateful to that man.

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sundown 2

We never had another evening quite as bad as the one described in PART I. The Sundowning continued despite adjustments to medications and the men in trench coats with guns arrived every evening around sundown until I made a decision without the doctors.

Sitting at the dining room table one day I told my husband we needed to talk. That we had something very important to discuss and he needed to listen to me carefully as I explained.  I told him how much I loved him and how I wanted more than anything for him to be healthy and without stress.  I asked him to confirm for me that he knew how much I loved him, which he did.  I told him that what I was about to say would be hard to deal with but was the absolute truth and he needed to believe me, he agreed to listen.  I explained that there was a movie made recently called A BEAUTIFUL MIND. It was a true story about a brilliant physicist who suffered from schizophrenia and would see men in trench coats with guns that no one else could see.  This man was so brilliant and had such a strong mind that he eventually overcame schizophrenia enough that when the images would appear he could tell them to get lost and to not bother him anymore.

I told my husband he had a beautiful mind.  That I was telling him this because I believed that he was just as strong and had as powerful a mind as the physicist. I asked him if he believed me, he said he did.  It was a solemn moment.  He accepted what I had told him.

I had previously arranged with my brother-in-law to be available by phone so my husband could talk to him about what I had just told him.  His brother had had similar experiences when on medication in the hospital after having surgery. He had thrown things at the nurses when he thought bad guys with guns were ambushing him on a street they were both familiar with in New York city.  This was very helpful.  His brother is one person my husband always said would never lie to him.

I had also arranged with a neighbor to talk to my husband about her experience with what medication can do to a person’s mind.  She is a retired surgical nurse who had suffered from extreme anxiety for years.  She was wonderful in her generosity to us.

From that day on the bad guys were not a problem.  We made an agreement that he would tell me if he saw something unusual, even a dog, so I could tell him if it was real.  For a short time, maybe a few weeks, I would occasionally see him turn his head slowly as I was wheeling him in his chair.  I would ask if he was seeing something.  He would say, “Yes, do you see it?” I would say, “No, it’s not there.  Just tell it to go away.”  He would accept that.  Soon they didn’t appear anymore.  It was like a miracle.  I was so proud of him and would remind him how brilliant he was.  It must have been so hard.




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