What do you want?

"The indispensable first step to getting the things you want out of life is this:  decide what you want," Ben Stein.

Far too many of us have had our dreams of what we want ignored or interfered with by other people, to the point that we have gotten out of touch with what we want and instead are doing what will bring the approval of other people.  Parents, educators, and other adults may have persuaded you that you should do or be something, to the point that you have lost track of what you want.  Being a caregiver for dementia can be so demanding that in this role, too, we can lose track of what we want.  After all, who has time to reflect on what one wants when one is supervising, assisting, monitoring, cajoling --- plus taking care of all the tasks necessary to keeping a household solvent. 

One thing we can do is think about what we want in respect to this task before us, this task of caregiving.  For me, I want harmony, ease, safety, as well as the basic needs of food and shelter.  But I also want fun, recreation, exercise, time for meditation/prayer, good conversations, supportive relationships, laughter. 

What is important to you?  How can we have what we need for our own well being?

Inner well being

"When you realize how perfect everything is, you will tilt your head back and laugh at the sky," Gautama Siddhartha Buddha.

What if it is true that the most functional way to approach life is to consider that everything is already perfect?  What if we really do create life from our attitudes, feelings and thoughts?  We may never know the absolute truth of this in our human experience, but what is the harm of implementing this approach -- just in case?  Joanne McFadden suggests, "we are called to enter a state of complete acceptance that we have everything we could ever want or need.  We know that that which we give out comes back to us multiplied."  It seems that the essence of these words comes from so many different sources that there must be truth therein.  And, we can also know that we benefit our bodies and minds when we choose to see that all is well.  All is very well, indeed. 

Boundaries

""Guilt trips are about violating boundaries.  Guilt trips are about control.  It is a way of manipulating people to get a desired outcome through indirect and passive-aggressive tactics." Dr. Val Farmer.

As dementia caregivers, it is nice when people offer to help us.  But not all of the help offered is in our best interest.  Sometimes people have ulterior agendas.  When the help that someone is trying to force upon us is not in our best interest or in the best interest of the person for whom we provide care, then we need healthy boundaries.  Dr. Val Farmer offers some tips for establishing boundaries when people are trying to control us or force some help that is not helpful:
1.  Mirror back to them what they are saying.  Confront them with their own words. i.e. "Are you saying I am not providing good care if I don't do what you want me to do?"
2.  Try to find out what they want, and tell them the options that you are willing to consider.
3.  Don't let them suck you into their plans; make your own plans and be very clear about them.
4.  If they try to inflict guilt, develop thick skin.
5.  Don't be afraid to say no, and if necessary, use the broken record technique, which is repeating what your plans are.
6.  If possible, try to get the issue clearly defined (although I find this is a hard one with people who are not willing or able to honor boundaries -- they also seem to have trouble being clear and forthright about what they are after.)

Help and support from others is wonderful, but only if it is in the form that is help and support for us --- only if it is the form of help we want.

Well being

"We didn't say: when you feel good you are allowing good, and when you feel bad you are allowing bad (although it may translate into your experience in that way). There is only a Source of Well-being—which you are allowing or not."--- Abraham

What if that is true?  That there is no bad, no evil; only goodness which we allow or not?  Intriguing thought, and it seems like a very good practice to consider.  Only goodness prevails, other people want only the best for us, only good experiences abound, only health exists.  What if only these good things exist, and our practice is to bring ourselves into a place of allowing that goodness in our lives.  I sometimes use the rule of thumb -- if a practice can cause no harm, why not try it?  It would seem that this practice could cause no harm, why not give it a try.  Look for, anticipate and allow goodness in our lives.  On the day that America celebrates its freedom; let us celebrate our freedom from any limiting beliefs or practices --- and let us implement practices that better serve our well being. 

Elder Abuse

"Elder abuse can take many forms: financial exploitation, physical abuse, sexual abuse, neglect or exploitation. It typically centers around a relationship of trust which is exploited to the elderly person’s disadvantage. The common denominator is the use of power and control by one individual to affect the well-being of an older victim. In 1987, Congress offered this definition of elder abuse: the domestic and institutional abuse of persons over age 60 involving physical, sexual, and emotional/psychological harm, as well as neglect, self-neglect, abandonment, and financial exploitation."  Tom Simmons, LLP.

As caregivers, we need to be vigilant to give ourselves enough breaks to enable us to keep our patience, and we need to be vigilant to protect the person for whom we provide care from being abused or taken advantage of by others.  Statistically, most people who are abused are done so by those they know well:  often relatives.  It adds another responsibility to our long list, but I think it is very important that we be informed and vigilant to protect our care receiver from abuse and exploitation.

Caregiver Relief

"Despite the useful caregiving strategies many of you share, clearly the stress of caregiving is the most consistent theme in your recent comments. In my experience, one of the most significant ways caregivers cope is by taking regular breaks." Angela Lunde, Mayo Clinic.

This week's Mayo Clinic Alzheimer's Newsletter has some excellent suggestions about the importance of having caregiver relief, how to do it, and to do it sooner rather than later.  The author recommends getting respite care in long before the caregiver thinks it is necessary, and to not elicit the permission of the care receiver in securing respite care (saying we will never get permission from them).  She suggests instead to say something, such as, "I am having Martha come in because I need some help."  She also says that guilt and denial are the leading reasons, along with the financial burden, for not getting respite for ourselves.  I agree completely!  For our own well being, as well as that of the person for whom we provide care, let us create consistent and thoughtful respite for ourselves.

To read the entire article:    http://www.mayoclinic.com/health/respite-care-strategies/MY01811/?utm_source=Alzheimers&utm_medium=email&utm_campaign=TargetedNewsletter 

Lost items

"I have learned silence from the talkative, tolerance from the intolerant, and kindness from the unkind.  Yet, strange, I am ungrateful to these teachers." Kahlil Gibran.

The above quote seems so true, to me at least.  Life's greatest teachers are not always ones for which I am grateful.  Dwane had several very good days; I think he was so excited about his daughter coming from such a long distance to visit.  But the adrenaline of that, or the nature of the variation of lucidity in Lewy Bodies Dementia, has shifted.  In just the last two days, he has left his glasses, his hat, and - yesterday his hearing aid!!!   I have become accustomed to scanning an area to make sure nothing is left behind; and good thing.  What have you found to help prevent loss of valuable items?  Coats, hats can be replaced.  But bigger ticket items like glasses and hearing aids? 

The visitors have cleaned up the debris left from the caved in greenhouse and built a new one on the site.  It feels like one of the old times "barn raisings" (friends, neighbors and relatives coming to build a new or damaged barn), and I am so grateful to have this accomplished.