Feb 27, 2010

Vision improved

"Finding the lightness in a situation that we have made dramatically heavy can bring on healing and happiness," Marsha Lehman.

It is perhaps easy to make heavy living with dementia or any terminal illness. In our human condition we can make heavy about any living situation. How much better to allow laughter, love and lightness into any situation.

Lightness entered our situation yesterday when Dwane received his new corrective lenses with specially-made prisms to correct his double vision. I am delighted to say that the trip to the ophthalmologist resulted in Dwane being able to read without having double vision. It seems important to check out any medical cause and remediation before assuming it is part of the disease process. We got hearing aids thinking that perhaps Dwane's trouble with comprehending verbal communication was because of a hearing problem. It was not. But the hearing aids do help us hear each other. So, well worth the effort and expense: the hearing aids and new glasses.

I am going to enjoy a respite with my daughter, so I will not be making a blog entry tomorrow. Let's all have a lovely weekend.

Feb 26, 2010

Maintaining peace

"When the mind is peaceful and still, it catches a vision of this greater good . . .," Ernest Holmes.

There are many techniques for acquiring and maintaining peace. Meditation, prayer, immersion in creativity, mindful walking, practicing being present. It is important that we each find what is most effective for us, and implement it. Perhaps nothing is as important as being at peace. Peace in the world starts with peace in our hearts.

Feb 25, 2010

Lost Keys

Yesterday we discovered another set of keys lost. It does not seem to matter how many safeguards I put in place, Dwane still loses things. Tools, checkbooks, keys, coats. I cannot even think of how/when he can lose something, as I am always with him. Can they be replaced? Of course. Is it frustrating? Yes, it is.

Feb 24, 2010

Being Heard

"Why is being heard so healing?", Margaret Wheatley.

In my training as psychologist and life coach, I know the value of creating the safe and sacred space of listening. Being heard is balm and growth for the soul. It is important for us as caregivers to have places where we feel heard. What brings you joy? Pain? What is uniquely you?

"Being heard until we remember we are whole is a need," Marsha Lehman

Feb 23, 2010

Planning Fun

"Unconscious intentions or intentions chosen out of fear ---- a feeling of not having enough or not being enough --- can sneak up on us," Marsha Lehman.

How true. For me at least. According to psychologist Dan Baker, too, fear of not having or not being enough underlies all unhappiness. So, to be happy.

The fun activity I planned for Dwane and me this week was a trip to a regional area with mineral hot springs. I thought immersion in the waters would be good for his arthritis and the swimming good exercise for us both. Since he does not walk at all any more, nor get any real form of exercise, this was good. It was a clean and welcoming atmosphere, and we both enjoyed it. I wondered if he would have trouble working the locker in which to stow his clothing in the men's dressing area. And lo and behold, a miracle: He asked an attendant for help. Amazing! I love him relying on help from people other than me. It was also good to see that he could problem solve this on his own. Yesterday at least.

Feb 22, 2010

Appreciation activity

"Anything that comes along that is better than what I've got.......I want to know about it," Ernest Holmes.

An activity in the book, What Happy People Know, may be helpful to those of us giving care to someone with a terminal illness. The author, Dan Baker, states that the most powerful tool for cultivating happiness is appreciation, and he suggests that we spend several minutes several times a day thinking about those things we appreciate. He even suggests that one can develop a top 5 list for appreciation, and that this can be applied to an illness. Following his example, we can make one for living with dementia:

Five Positive Aspects of Living with Dementia
1. Dwane's diagnosis caused both him and me to reevaluate what is important in our lives.
2. We focus on creating quality time.
3. We are grateful for those people who are kind and supportive to us, and we avoid the negativity of a few who misunderstand us.
4. We are living the life we want to live, knowing it is finite.
5. We have stopped working so hard, and we focus on fun and finding meaning and purpose in our lives.

If you are living with dementia or any terminal illness, creating a list of what positive things have come from it may be helpful for you.
5.

Feb 21, 2010

Happiness Tools

In his book, What Happy People Know, Dan Baker lists 6 happiness tools: things we can each do to increase our happiness:
1. Appreciation: First and most important happiness tool, an antidote to fear, the strongest form of love.
2. Choice: The author of freedom and the voice of the heart. Happy people choose the course of their lives.
3. Personal power: The proactive force that gives one power over feelings and one's fate. Taking responsibility and taking action are the components of personal power. Personal power keeps you from being a victim.
4. Leading with your strengths: Lead with your strengths instead of trying to fix weaknesses.
5. The power of language and stories: Language can alter perception. We think in words and we can choose to tell healthy stories or horror stories.
6. Multidimensional living: Three primary components of life: relationships, health and purpose (usually called work). Strive for balance among the three components. Happiness comes from a full life.

Feb 20, 2010

Happy People

"Happiness is the whole aim and end of human existence," Aristotle.

A friend recommended the book, Wat Happy People Know,by Dan Baker. It is a good read. The author says all of life is a dance between fear and love. Love takes us to happiness, and fear takes us away. I like the 12 qualities of happiness:
1. Love: the wellspring of happiness, most enjoyed when we are loving, an antidote to fear.
2. Optimism: This provides power over painful events. It gives you power over fear.
3. Courage: Nature's natural balance for fear.
4. Sense of freedom: Freedom is choice. When we choose, we define who we are.
5. Proactivity: Participation in one's destiny and forging one's own happiness.
6. Security: Knowing that feeling secure is based on simply liking who one is.
7. Health: To include healthy mood chemistry.
8. Spirituality: Concern about not living, rather than about dying.
9. Altruism: Not self-absorbed (as unhappy people are), gives one purpose
10. Perspective: Can prioritize their problems and turn them into possibilities
11. Humor: Shift of perception, lifts suffering off the heart and hands it to the intellect which can deal with it.
12. Purpose: Happy people know why they are on earth. They are doing what they are meant to do.

Good reminders for us as caregivers. Tomorrow: 6 happiness tools

Feb 19, 2010

Photos

"With conscious choice, you can take the mental photos you want. You can, with spiritual technology, decide how you want to see things," Marsha Lehman.

How true. Our current ability to take digital photos, manipulate, change and refine them can be an example for us with our mental photos. We can transform the mental images we see; thus changing our thoughts. Author Marsha Lehman suggests we look around our environments, take a mental picture of how we would like it to look and imagine how we would feel with that mental picture. Like Victor Frankl; we can always control and change our attitude. So too, perhaps, we can find new ways of seeing our environments.

Feb 18, 2010

Inspiration

"Be the change you want to see in the world," Gandhi.

When I am tempted to think how something "should" be thus and so or someone "should" do thus and so, I am reminded by Gandhi that the only area I can control is myself. If I desire change, and I do, the only real change is within and by oneself. If I cannot change the situation, at least I have control over changing my attitude.

Feb 17, 2010

Integrity

"I water my wilderness with faith, and suddenly it blossoms as the rose," Florence Scovel Shinn.

In the book, No Act of Love is Ever Wasted by Thibault and Morgan, one of the authors states that the last lesson we teach our children is how to die well. I think that plays a factor in my choosing to provide caregiving to Dwane. When I became a mother, I remember consciously thinking that it wasn't just about me any more. It changed me dramatically in the responsibility I felt for modeling well for my children. I think part of what I am doing in providing care with graciousness is modeling for my children the way I think people who are dying should be treated. Dwane is not their father, so it is not his aspect that would be modeled for them; it is mine. How do I feel people with dementia should be treated and what is my choice in responsibility toward that person.

Feb 16, 2010

Patience

"Fear wants us to act too soon," Mark Nepo.

When I feel impatience, it is usually fear behind it. Fear that more will go wrong, fear that things won't get done, or done in time. Yesterday Dwane some how managed to get the television remotes so messed up that it took me an hour to have television back on for him. Time I had planned on spending on figuring year-end expenses and taxes. I choose to regroup. Business matters will get done on another day.

"Today, I enter into the experiment of waiting in the energy of loving kindness for myself and others," Marsha Lehman.

Feb 15, 2010

Intimacy

"How can I help your day be more wonderful?" Marshall Rosenberg.

One of the things perhaps most missed in living with dementia is intimacy, especially emotional intimacy. So, how can we remain intimate? There are creative ways we can remain intimate with the person who has dementia, and we can also create intimacy within our network of support. I am not talking of sexual intimacy; I am talking about love and support and the broader definitions of intimacy. We can look for authenticity and loving connection in any and every encounter.

Feb 14, 2010

Looking for the good

"Describing our Good will bring it to our sight again." Emma Curtis Hopkins

It seems that people are either oriented to seeing the good in life or they are oriented to seeing what is wrong in life. The better orientation for mental health is to see what is good in one's life. Research supports that an orientation toward the positive is life enhancing. Joan Borysenko and others recommend expressions of gratitude to help a person orient toward seeing the good in his/her life. What is there to be grateful for: Dwane has been more lucid for the past week than the previous 6 weeks. It is a beautiful and sunny day, albeit cold. I am so enjoying watching the Olympics (we have television coverage for the first time in 8 years.) My children are well, safe and experiencing transitions that seem very good for them. Life is good. I will look for examples that support that goodness today.

Feb 13, 2010

Stress tips

A local (cbs I think) television station gave the following tips for handling stress during a recent broadcast:

1. Decide: Is this important?
If no: let it go. If yes, go to question #2.
2. Is it reasonable to be angry?
If no: let it go. If yes, go to question #3.
3. Can I modify the situation?
If no: let it go. If yes, modify the situation.

I use a similar method for handling stress in my position as caregiver. When something goes awry, I always evaluate: Is this worth getting upset about? Usually it is not.

Feb 10, 2010

How to Help the Caregiver

These ideas were in a recent Mayo Clinic Alzheimer's email/newsletter, and I love them.

How to help someone who is providing care for someone with a terminal illness, i.e. dementia:

Don't say: "Let me know how I can help." It's a nice gesture, but such offers can be difficult to accept — primarily because they're not specific. Instead, make concrete offers of help. For example:

1. "I'm going to the grocery store. What can I pick up for you?"
2."I've got a couple of hours free tomorrow afternoon. May I sit in for you while you run a few errands or take some time for yourself?"
3."I doubled my meatloaf recipe so that I could share it with you. I brought enough to last you for several meals."
4."Do you need some laundry done? I can pick it up today and bring it back clean tomorrow."
5. "Does your yard need to be mowed? I'd be happy to take care of it this weekend."
Sometimes sending a card or making a phone call to check in on a caregiver means a lot. Emails and text messages work, too — but often personal visits are even better. Contact with the outside world can help lift a caregiver's spirits.

© 1998-2010 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved. A single copy of these materials may be reprinted for noncommercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.com," "EmbodyHealth," "Enhance your life," and the triple-shield Mayo Clinic logo are trademarks of Mayo Foundation for Medical Education and Research.
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Book

A very dear friend sent me a book which I am finding very helpful, "No Act of Love is Ever Wasted" by Jane Maire Thibault, PhD and Richard L. Morgan, PhD. The title is further described as, "The Spirituality of Caring for Persons With Dementia," which resonates with me and is akin to my intention for this blog. The authors state that it is easier to find physical and financial support for the person with dementia and the caregiver, than it is to find spiritual support. My intention with this blog is to provide spiritual support and good information.

I am grateful to the gift from my dearest friend for over 40 years. What a gift to be so loved by someone that she (or he) thinks of and wants only the best for the other person. Thank you, Ruth.

Feb 9, 2010

Acquiring peace

"Peace is the power at the heart of God," Science of the Mind.

I think peace is our power too. When I am peaceful and cheerful, Dwane responds so much better. If I am anxious, he reflects that as well. It is fairly easy to choose peace. A wise person once said to me that anxiousness is caused by how one perceives a situation or event. One can choose anew; to choose a more neutral way of seeing events. My peace has the power to create peace for Dwane too.

Feb 8, 2010

Systems

It is said that one reason to create habits is that it frees up our minds. We don't have to stop and think about the steps of an activity that has become a habit. Consider brushing your teeth. You no longer have to think about what to do first, second; because it is now a habit.

I think systems can serve the same purpose, and we can create systems to support us while we support someone with a terminal illness. There are many categories we can consider. Financial: can we have any more automatic deposits or payments, so we don't have to do that work each time ourselves? Medical: Can you devise a system of medication that works easily? Physical: Is there anything you can do to make bathing and dressing easier? Perhaps pull-on garments or having someone come in to assist with those tasks. Are you able to create time for physical exercise yourself by creating a system that allows you the freedom to do that. Respite: how do you access and use your respite time? Independence: what can you do to support any level of independence in the person with dementia?

Today let's consider what systems we can put in place to make the lives of the person for whome we are providing care and our own lives easier.

Feb 7, 2010

Social

Today we are invited to a Super Bowl party. I am looking forward to it. Dwane likes social events, and I will enjoy having easy, relaxed conversation. It is our extended family who has invited us. I am so grateful for the kindness of my family to Dwane and to me. So, a bit of cheer and "time off" for me. A good day.

Feb 6, 2010

Confusion

When I notice the confusion in Dwane and it concerns me, I remember those people with the type of dementia with significant memory losses, and I feel grateful that I am not dealing with that also. Recently there was a newspaper account of a woman found dead from hypothermia in a field. The article said she had been diagnosed with Alzheimer's Disease. My heart goes out to her and her family. I think of the amount of guilt one could feel if a person had been responsible for her safety. There are many safeguards we can take to provide for the safety of the persons with dementia for whom we care, but there is no absolute safeguard. We do the best we can by putting in preventative safeguards; we are vigilant in our watchfulness; we are responsible. And that is all we can do. We cannot prevent all incidents.

Feb 5, 2010

Memory boosters

We who are providing care for someone with dementia or any terminal illness are under some stress. It is critical that we take good care of ourselves and preserve our own health. One area to preserve is our own memory. According to Consumer Reports OnHealth there are 3 things we can do that can actually improve our memories: 1. Eat fruit and vegetables. 2. Engage in regular exercise 3. Reduce stress. The article goes on to say that stress, bad news, family arguments, unexpected work demands (and it could certainly add: caring for someone who is terminally ill) all cause stress, which causes memory lapses. Relaxation exercises (or meditation) for 20 minutes a day improve attention and responsiveness in just five weeks.

One thing that does not show evidence in improvi9ng memory, according to this research, is any supplement, such as ginkgo biloba or beta-carotene.

So, to the health of us all.

Feb 3, 2010

Good news

We got good news at the ophthalmologist today, at least in the short term. The double vision Dwane has been increasingly troubled by can probably be corrected by adding prisms to his corrective lenses. The double vision is caused by weakening eye muscles, so there is the possibility with his diagnosis that it will worsen (though the eye doctor, of course, could not definitively predict this). But, for now, she thinks new corrective lenses will help his eyes focus together and eliminate the double vision. Very good news. For him to be able to continue his greatest enjoyment: reading.

I will not be doing a blog entry tomorrow because of a medical procedure I am having. Thank God for my daughter to drive me to and from it.

Glimpses

Dwane usually does not express any particular perceptions or happenings in relationship to his diagnosis. He has several times complained that his eyes feel like they are being pulled back into his head, which seems to coincide with a decline in his functioning. He also complains about his double vision, but he does not complains about, nor seems to notice, his inability to do things. A recent exception was when he expressed frustration over being unable to think of a word. I tried to help him by asking what topic he was going to be talking about, but he was unable even to verbalize that. And that is what seemed to frustrate him. I knew what he had been reading, so I was able to talk about it enough for him to catch the word, "ethics" and remember what he was going to say. It is puzzling to me. He realizes it is his brain that has difficulty finding and expressing words, but he does not realize it is his brain which makes it difficult for him to use a tv remote, or telephone, or do other multi-step tasks. Dementia is mysterious to me. I wish we could understand more what occurs, and even more -- what could prevent it.

Feb 2, 2010

Attitude

"The attitude I have -- rather than the results I produce -- is the most important measure of my life," Jack Boland.

Attitude is important. It is important to me that interactions, living conditions, daily activities be pleasant. Attitude has impact on whether or not these things are pleasant. In my early life, training in special education steeped me in behavior modification. I found that I personally preferred setting up conditions that prevented problems, and that preference serves me well in providing care for someone with dementia. I notice areas of difficulty; such as the reading, and we make accommodations to alleviate the difficulty. The Kindle is working out splendidly in this regard. One may not need to buy an electronic book device, as libraries sometimes have them. The pill taking was another problem area, but developing a system using a 7-day pill dispenser handled that. It seems easier to me to prevent a problem than to deal with the emotional fallout that results when problems occur. Losing a checkbook was a problem, so I opened a separate account for Dwane that has a relatively small balance. That way he can keep his dignity and still write checks, but there is not the concern that he will compromise our larger accounts by losing the checkbook. What area of difficulty in your life can be prevented by implementing changes in the environment? My next step is to obtain a credit card for Dwane that has a smaller line of credit, in case he loses it.

Feb 1, 2010

Meaning

"Today, more than ever before, life must be characterized by a sense of Universal responsibility..... nation to nation .. ... human to human..... and human to other forms of life." Dalai Lama

It helps me to not become discouraged in this caregiving role if I can find a sense of meaning and purpose about it, larger than the every day tasks and sacrifice. Finding meaning and taking care of oneself are so important for caregivers, at least for me. So, Universal responsibility, suggest Dalai Lama. That resonates with other beliefs I have that our actions affect us all, and that as good stewards and citizens we behave in a way cognizant of others. Seems easier to apply on a large, general scale than to the individual, the care of one other person. Is it just as important to be caregiver for one person as it is to work to preserve the rain forest?