Ground Rules to keep your spirits up.

positive

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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SUNDOWNING PART II

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.

 

Hugs,

 

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SUNDOWNING PART I

sundowning

Have you heard of SUNDOWNING?  Most sources describe it as “a state of confusion and restlessness experienced by people with dementia.”  “Not a disease, but a symptom.”

In the spring of 2008, when my husband and I were experiencing some of the worst times of his illness I was desperate for help.  He wasn’t able to sleep therefore… I didn’t sleep.  He had lost a lot of weight and was probably down to 110 pounds.  His stress level was “to the moon!”, as he would say. Though I didn’t recognize it in the beginning, he was in the throws of “Sundowner Syndrome.”  It’s a condition commonly known to caregivers in nursing homes. As the sun begins to set, the agitation of the patient begins to surge and confusion sets in.  My husband’s case was severe.  He would hallucinate.

Not all cases go to this level.  The doctors had him on medications that addressed heart issues and fluid levels, even a low dose of an anti-depressant. He was also taking a prescription to relax him.  He was a stressful man before he got sick.  Our lives were now a nightmare.  I had never heard of Sundowner Syndrome.  Like everything else, I was learning by-the-seat-of-my-pants.

It started mildly, with him saying, “Oh, there’s a cute little black dog.  He jumped into my lap.”  That seemed harmless enough, just sad.  It was another sign of his aging and a little dementia.  He was 85 now.  A little dog was no problem and it seemed to give him pleasure.  I didn’t contradict him.  But my heart ached a little.  My husband was totally blind, how could he see a dog?

Within a day or two, with me sitting next to him, facing the windows in our living room he said, “Be still.  There are three men in trench coats with guns pointing at us.” Calmly, I said something like, “Ok, honey, I don’t know what you’re seeing, but I don’t see anything.”  He insisted I call the police.  Obviously, I couldn’t do that. I tried to reason with him.  We agreed I would call our neighbor across the street who is a retired nurse.  I told her why I was calling and she understood.  Our closest neighbors knew that I kind of had my hands full and they were wonderful.  She came right over.

My husband gave me instructions to stand next to him and hold his hand while she was to look in every room, including the closets, and report back to him with anything that was out of the ordinary.  I told her in front of him what he was seeing and that I couldn’t see anything.  She was amazing and cool.  As a nurse she had seen a lot.  She took her time, did everything he asked and told him she saw nothing unusual.  We thanked her and she left.  He wasn’t relieved, just knew he was losing the argument and didn’t have control.  By now he didn’t trust me.  I learned later that he figured I was in cahoots with the bad guys. Otherwise, why would I deny their existence?

Somehow we got through that night and a few others with me doing my best to deal with this situation, trying to convince him that there was no one there.  I couldn’t insult him by saying he was seeing things.  I tried explaining that there was this condition that some people experience when the sun goes down.  It was like shadows, I said.  Meanwhile I was talking to his doctors about medication adjustment or anything that might help.  They told me to humor him.

On the worst night of all, we had come home from an early dinner out.  It was dusk.  Just as I thought I was getting him settled in his chair he said, “We have to get out of here, they’re back!  Let’s go for a drive and see if they go away.” I thought, OK, we’ll go for a drive till dark, what can it hurt?

As I put him into the front passenger seat he said, “call the neighbors, they’re still here” (in the garage now).  I told him “It’s OK, there’s no one here.”  This was useless as I was the enemy now.  I used my cell phone to call our next door neighbor.  He came right over and assured my husband everything was OK. “There’s no one in the garage.”  It appeared to be working.  We thanked him and in his oh-so-kind way he left us, feeling helpless I’m sure.

We were only about a block from our house, driving very slowly, when he started searching for the door handle and opened the door.  My blind husband wanted to jump out of the car!  Thank goodness he had a seat belt on and no strength.  I was horrified and hollered for him to stop. Our street is private and short so there were no cars coming.  What I didn’t know at the time was that he was seeing the men in trench coats, with guns, in the back seat.  Poor guy was terrified for our safety and couldn’t trust me because I wouldn’t admit that they were there.

In the end, he decided that things would be OK for him if we went to a particular friend’s house, so that’s what we did. They took us in without hesitation.  My husband’s friend distracted him, gave him a martini and comforted him with conversation and laughter for about an hour.

The sun was down now.  We could make it through another night.

This story continues in my next post titled “SUNDOWNING” Part II

 

Hugs,

 

 

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