Tuesday, April 8, 2014

The Journey of Dementia

Good day all.  As you can see from the title of this blog entry, like all things in life the experience of dementia is a journey--for both the individual and their loved ones.  We learn and grow from journeys, we experience joy, and we grieve.  Sometimes the journey is wonderful and other times it feels like an absolute nightmare.

Living with dementia can be heartbreaking but it can also give you the opportunity to provide your loved one with the greatest gift you have--your time and love.  Patience is key.  Second is an attitude of non-resistance. 

Let's first talk about love.  Today in the Memory Center, AltaGolden's Adult Day Program, one of our clients said he had a confession to make.  He told everyone that he thought his wife was going to leave him because he has dementia.  His wife reassures him daily of her love and devotion, but I think that this fear is common when one spouse has such a significant and degenerative condition.  We have another client who has expressed similar concerns.  These feelings of insecurity permeate many aspects of the life experience when you have no control over your ability to remember events, people, or how to do things.  Even the ability to communicate, remember words, and form sentences becomes a challenge.  Add to that our natural tendency to want to "assist" by completing someone's sentence for them when they are having trouble finding the right words to express their intent.

One of our in-home clients has mild cognitive impairment and it often takes her several seconds to pull out the right word.  Several seconds doesn't sound like much but try counting to yourself, on-thousand, two-onethousand, three-onethousand, and so on up to ten.  It's actually a fair amount of time, but it sometimes takes that long for this woman to pull the words out of her head.  And she hates it if I try to help her with the word.  I have learned to just be still--eventually the words come.

This idea of stillness can be very important.  Today we had a client that became disoriented as to his location and wanted to go home.  Nothing we did could console or convince him to stay so Nora walked outside with him and during that walk she validated his feelings and gave him the space to become peaceful again.  By the time his ride came to take him home he and Nora were standing arms around each other like old buddies and he was peaceful again.  Nora was very non-resistant and accepting and this allowed our client to also be non-resistant and peaceful.  We have learned that the more you push against the desires of someone with dementia the more they will push back.  Being gentle, consoling, accepting, validating, and peaceful is important--even tho, at times, it is very difficult.

There are times when I am working with someone and I will just be in prayer.  There is one particular prayer that I especially like--partly because it reminds me why I am here and why I have chosen to be a caregiver.

The Prayer of St Francis
Blessed spirit (my personal beginning)
Make me an instrument of thy peace
Where there is hatred let me sow love
Where there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light
Where there is sadness, joy

Oh divine master
Grant that I may not so much seek
To be consoled as to console
To be understood as to understand
To be loved as to love
For it is in giving that we receive
It is in pardoning that we are pardoned
And it is in dying that we are born into eternal light

This prayer serves as a reminder that I am here to serve and sometimes that service lies in stillness.  Disorientation, agitation, anger, and despair are all common emotions we see in someone with dementia and these same emotions end up being mirrored in the family and caregivers.  It can be very difficult to remain peaceful when the world around you feels like it is falling apart.

I've mentioned this in the past but it bears repeating.  The most important thing the family caregiver can do for themselves is to get a respite break.  Have another family member come in to take care of mom or dad/husband or wife, hire a caregiver, send your loved one to a day program, have them go for a few days to a residential community.  Whatever you do, make sure that you are doing what is needed to regroup, allow yourself to be peaceful, and rejuvenate.  We've had spouses come to the support group and they have been very reticent about turning their partner over to a caregiver.  They are exhausted--emotionally and physically--and increasingly isolated from friends and activities due to the demands of their caregiving responsibilities.  I tell each of them the same thing.  You must take care of yourself! 

Stress is incredibly debilitating and can cause myriad health and emotional problems.  It can also make you quicker to anger and not allow you the peace needed to face each new day.  Give yourself permission to rest and have a break.  Give yourself permission to go out with your friends.  Early in the dementia progression your loved one will be able to participate in outings with your friends.  As time goes on this becomes increasingly difficult and eventually your loved one will self-isolate or your friends will distance themselves.  Have the honest discussion with your friens that you really need them in your life but also remember that you need to have what I call your "adult time" with them.  This is not a betrayal of your love or devotion to your partner or parent--it is simply self-preservation.  You must survive this experience and you want to survive it in the best physical and emotional state possible.

So please, take care of yourself and let that be OK.

And don't forget to make cookies--I've even give you the recipe!  I had to end on a lighter note--it is my nature.  Be well, friends.  We're all in this together.  One planet, many people, no islands.

Wednesday, April 9th is AltaGolden's monthly dementia support group at the Memory Center from 5-7pm.  Let us know if you'd like to come.  If you can't make it, we're here every month.  I'm also working on getting support groups going at some of the local churches and synagogues.  Let me know if you would like to to start a group in your community.

That's it for now.  Be well and many blessings to you always.  Laura Barish