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The Ribbon - Care for Caregivers
Volume 8, Issue 6
April 3, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

Well folks, I can say I'm rested and ready to get back at it tomorrow! We were so busy this week at work! I was bone tired Tuesday night when I got off. We were kept hopping all day long each day. My feet hurt and I wear nurse's shoes! Usually when I'm off I'm anxious to get back to work. This week the anxiousness didn't hit until Thursday evening. (smile)

One of our patients was heartbreaking. He was my age and come to find out he went to the same school I went to. He was a year behind me so I didn't know him then. He had a serious illness about seventeen years ago and it lead to his having severe dementia. It is a sad thing to see.

A terrific thing to see was a heavyset patient who came to us who has been bedridden and withdrawn. I had to stop by Wednesday and lo and behold! This patient was up in a wheelchair and all smiles!

I cannot say it enough times, when there is a change in your loved one, combativeness, depression, not eating (not at last stages), etc. See about their meds, have them checked for a UTI. A geri-psych unit works wonders. I will be a little smug here for a moment, I will have to say that I think our small 12 bed unit works better than a large one since we can give a little more individual time to our patients. Our Psychiatrist seems to have a second sense when it comes to adjusting meds. It doesn't seem to take long until we are seeing major improvements in our patients.

Everyone send good thought this way for Easter. I will be working and I'd love for the weather to be nice so that we can take the patients out into the courtyard for an easter egg hunt. After a nice lunch a trip outdoors will be nice. Hopefully the dogwood trees will have bloomed and still be in bloom next week.

Jamie


In doing some research this week I ran across two new websites I truly loved! I am printing an article from each with the link to get to the sites. I hope you will check them out as there is so much more in each of them. I just read and read and couldn't get enough!


Spirituality

The concept of spirituality has been niggling at me for a while now....not uncommon for people in our 40's. It probably started when my mother died and has been lurking in the back of my mind.

Questions like: who am I?, what am I?, what is this thing - this concept - known as my life? Questions that take a lifetime to answer because the answers keep changing.

I recently attended a support group "Caregiving and Spirituality", led by Douglas Graydon, Pastoral Counselor for Casey House here in Toronto. Casey House is an AIDS hospice so I can only imagine the burdens he must share on a daily basis.

During this evening we all admitted that we as 20 th century humans are used to quick fixes; give us a book, a course so we can find the answers and get on with our busy lives. I'm as guilty as the next person! It seems there is very little in our lives that we don't talk about...politics, religion are open season at coctail parties. But when was the last time anyone asked you:"So how is your spiritual development going?" Apparently this topic is too personal or embarassing for us to openly discuss with others.

The dynamics of spirituality is the ability to discern within ourselves the dynamic of our 'otherness' - in other words - to be conscious of not only myself but also to be conscious of others around us and also to be aware of that otherness known as community. Three significant spiritual needs of a person are:

  1. The search for the meaning of life
  2. To live and die appropriately
  3. To find hope that extends beyond the grave

We discussed what it means to be a caregiver from a spiritual perspective...to be with someone else on their journey towards the end of life. According to Doug, there are 3 steps in spiritual caregiving:

  1. To bear witness to
  2. To be present to
  3. To give expression to/li>

We also discussed what we could do to feed our own spirituality. He gave us a few exercises which I share with you here.

The first is a Journal Exercise. Many people journal their lives or parts of their lives; many caregivers (including myself...see On My Mind) record our caregiving experiences to ease the stress and to have something to remember when the person we care for has died.

The other exercise was a Spiritual Care Contract. This exercise..I have not done it yet...is to help us start thinking about spirituality on a daily basis by putting some goals down on paper.

Doug read us some short poems and meditations which were wonderful. He suggested we start small; spend a few minutes a day reading and reflecting on a passage of some kind. He gave us the title of some books; when I find them I'll pass on the details.

One other thing I learned; I asked how I could learn more about what my father needs from me spiritually. Since he has dementia, coupled with aphasia from his strokes, it is so hard for me to talk to him about anything, let alone something as oblique as spirituality. We somehow got onto the language of dementia and how words uttered by someone with dementia often mean something totally different. Doug said that when a person with dementia asks to go home, they don't necessarily mean their previous physical home, but rather they are expressing the desire to return to what they were when they could speak, understand and communicate ...to a time when they had their minds. I asked how a caregiver could respond to this issue; Doug suggested we ask our loved one some simple questions: Do you feel loved? Do you feel nurtured? Do you feel secure? Because these are the primary needs of those with dementia, these questions may help alleviate this caregiver's obsession with helping her father in any way she can.

Caregiver Network


About Karen Henderson

For 14 years I was involved in caring for my father, something I never anticipated. He died on Easter Monday, April 24, 2000.

If I had known back in 1986 what I know now about caregiving, I could have saved myself considerable worry, frustration, anger, illness and guilt. I probably would have done some things differently -- I know I would have been a healthier, more effective caregiver

Read more about Karen at the website....truly an amazing woman!


Respite Care

Dare to Ask for the Help You Need

by Pauline Salvucci

Respite care takes top billing among the many challenges facing family caregivers. Most caregivers take on the responsibility of caregiving without considering the need of respite care as an ongoing necessity. While some can afford to pay out of pocket for help, many can't. Low income caregivers often qualify for assistance from subsidized programs if they're available, however, that still leaves many caregivers without the financial means to pay for the respite care they need.

If you're a caregiver who experiences constant frustration and a sense of hopelessness about finding respite care, you're certainly not alone. However, part of the answer to this problem may be within your grasp -- if you're willing to take steps and ask for the help you need. Before you dismiss asking for help a waste of time and energy, give yourself the benefit of altering your perceptions and read on.

Taking the Plunge

Yes -- asking for help is difficult. You're probably not used to doing it, most of us aren't. It takes practice. It also takes something else -- the freedom to ask. Here's the rub. Many of us weren't brought up to ask for what we need. You may have little or no experience in asking others to help you. Again, you're not alone. If you examine what feelings and attitudes that prevent you from asking for help, you may find yourself feeling one or more of these common responses:

  • The fear of being "selfish"
  • "Feeling guilty"
  • Experiencing a sense of shame

The problem of asking for help isn't in the asking -- it's in minimizing or overcoming the obstacles that prevent us from asking. Let's make this the starting point and examine how a shift in thinking and perception can free you to ask for the help you need. The following four exercises are valuable because when faced with changes that "tweak" our comfort zone, most of us resist and freeze up. Remember -- telling yourself the reasons why you can't change, rather than how you can, insures continued frustration accompanied by a sense of helplessness and hopelessness. These exercises will help you shift your perceptions about asking for help.

Respect your Need for Respite Care

Accepting and respecting the fact that you need respite care is the first step in asking for the help you need. The decision to ask for help increases rather than decreases your self-esteem because it acknowledges your need. This is a good thing. Not acknowledging your needs, or pretending you don't have them, protects you from asking for help. If you have rationalized your decision not to ask for help by convincing yourself that you don't need it--that others are too busy -- that you're just going to get a "no" anyway, so why bother -- you're not respecting yourself. What has this cost you in terms of your quality of life? Respect your decision to ask for help. Don't say, "I don't care," or "It doesn't matter," when you do care and it does matter.

Examine how Shame Drains you.

Shame can prevent you from asking others for help. To examine how shame affects you, complete the following sentence: "I feel ashamed when..." Repeat this sentence and list your shameful feelings. It's tough, but be honest with yourself. Using the following scale, rate each sentence according to how often you experience the feeling it expresses:

  1. Sometimes
  2. Almost always
  3. Always

Total the number of sentences in each category. The result indicates the degree to which shameful feelings drain and rob you of energy and the freedom to ask for the help you need.

Say "I Want", and Let Go of "I Should"

Beware of "should thinking." "Shoulds" not only diminish your responsibility to make choices, they also reinforce a sense of unworthiness. Use the phrase "I want" rather than "I should." This will help you release internal pressure and explore options to get the help you need. When you say "I want", you affirm a positive sense of yourself and your practice of self-care. You are worthy of having the help you need.

Relax Your Mind

Changing old patterns makes most of us up uptight. A relaxed mind will help you focus on your goal to ask for help. Get comfortable, close your eyes and take slow deep breaths. Allow your body to relax. Open your eyes and choose an object to look at -- a pencil, a rock, a book, whatever you choose. Now really look at it. Slowly examine its composition, color, shape and texture. You can decide to look at more than one object -- just do this very slowly for a period of two or three minutes. When you stop you will experience a relaxed mind. This happens because your mind clears as you shift and refocus your attention.

Within the Family

When you're ready to ask for help, talk with family members first. It doesn't matter if they live a mile away or 1000 miles away. The point is to make them aware that you need help and you're looking for their ideas and input. No idea is a bad one. When you're willing to express your needs and talk with your family, you allow them to put forward their best effort in helping you and your care recipient. Families can be very creative and inventive. You could miss out on some good solutions if you exclude them. The following are a couple examples of what some families came up with to help their parent caregivers.

After one woman asked for help, her four adult married children decided they would each contribute $10.00 a week toward respite care help for their mother. The teens who held jobs volunteered to help and another $5.00 a week from each working adolescent was added to the pot. Every month over $220 was collected for respite care. This was $2640 a year more than what their mother had before she talked with her family. She not only felt supported by the response of her children and grandchildren, she also experienced a genuine sense of connection that helped minimize her sense of isolation. The children and grandchildren felt they shared equally in providing help. This family created a win-win situation for everyone.

Another family living within a 30 mile radius of their parents, volunteered four eight hour days per calendar year to help their father. The caregiver parent decided what increments of time he wanted and one of his children took responsibility for working out a monthly schedule with all the other siblings. Each month this caregiver received eight hours of respite care -- eight hours more than what the he had before he asked.

Both examples illustrate that asking for help from family can result in receiving it. It isn't the perfect solution and in many situations, it isn't enough time, but it's a solution that worked for these families -- and it's better than nothing at all. In both cases, the parent was willing to ask and the children responded by making equal contributions of money or time. This, in part, may be the key to each family's success.

Beyond the Family

It's also possible to look beyond your family. Most churches and synagogues today have a family life, social justice or faith in service action committee. Oftentimes these groups are willing to help when they receive direct requests. Just because a "program" isn't already in place doesn't mean a need can't be met. Many people respond well when they're directly approached for help. Get the name of the appropriate contact person and telephone them. Let them know who you are and what you're requesting. Give them the opportunity to fulfill your request or network on your behalf.

Talk with people you know and let them know you're looking for volunteer help. People get jobs and business through networking because it works. When you begin to think of your family and people you know as a resource network, you broaden your scope and open the door for options you may have not know about or even considered.

Another option for respite care comes from other senior citizens who volunteer their time and talents at over 100 Shepard's Centers around the United States. This is a free service in some areas. I e-mailed them about their services and received the following response: "Shepherd's Centers in some areas provide volunteers to help on a part time basis with respite care. Centers in some areas provide volunteers to help on a part time basis with respite care. The volunteers are other older adults. In addition, some centers help with yard work, small home repair projects, and grocery shopping. Check out our web site at http://www.shepherdcenters.org for some of our local center activities. When we receive calls from areas not presently serviced by a local center we refer them to the eldercare locater, AARP, or their local United Way office."

Getting the respite care you need is an ongoing process. If you say nothing and don't ask for help, you probably won't get it. If you dare to ask for help, you're taking positive action on your own behalf, making your respite care the priority it deserves to be and allowing your family, friends and neighbors to help. You have choices. Dare to ask for help -- develop your skills, give yourself permission to ask. It takes practice -- you can do it!


Copyright © 2001 Pauline Salvucci. All Rights Reserved.

The content of this article may be forwarded in full without special permission provided it is used for nonprofit purposes and full attribution and copyright notice are given. For other purposes, contact Pauline Salvucci at Pauline@SelfCareConnection.com

Pauline Salvucci, M.A., is the author of the Self-Care Now! booklet series, a personal coach, founder and President of Self Care Connection, LLC. Her specialty is coaching men and women at midlife, particularly those living with chronic health conditions and family caregivers who are "sandwiched" between their families and their aging parents. Visit Pauline's Web site at: http://www.SelfCareConnection.com
E-mail: Pauline@SelfCareConnection.com


Alzheimer's Disease Insight

by Risa Levovsky

Q: How do I explain Alzheimer's disease to my children and grandchildren?

A: Here is some practical advice on how to tell children and neighbors about Alzheimer's disease or other forms of memory loss:

  • Once overcome your own denial, you will you feel more comfortable sharing information about Alzheimer's disease with friends, neighbors, children, grandchildren or your extended family.
  • As Alzheimer's disease progresses, the grandchildren may notice changes in their grandparent's personality. They may hear Grandpa or Grandma becoming repetitive, forgetful, short tempered and even more distant.
  • Explain that Grandpa or Grandma has an illness, which is causing him/ her to act differently from the past. Let them know that the disease affects the brain and causes him/her to say and do things, which he/she does not mean to do.
  • Reassure them that they are not causing this behavior.
  • Tell then that their grandparent still loves them regardless of what he/she may say.
  • Remind them that although it may look like their grandparent is getting better one day, he/she may appear to be getting worse another day.

Today, there is no cure for the progressively debilitating condition called Alzheimer's disease. Acceptance and inner peace is truly attainable. Begin your journey to acceptance and inner peace by sharing your insight and thoughts about Alzheimer's disease with others. Through discussions, insight from books or through your own actions, you will be concurrently helping yourself and others!

For more information about Alzheimer's disease, please visit www.alzheimers-tips.com


Email Bag

From donweller@worldnet.att.net

Thank you for your newsletter. I am the outreach specialist for the Family Caregiver Support progam on the Kenai Peninsula in Alaska. I was going to pass on the bedsore recipe, but I have a question. The zinc oxide says "with either". Is that either size of Maalox or something else?

Thanks, Janell Weller

donweller@att.net
caregive@acsalaska.net

I talked to Sharron B. and she said she is sorry for the misunderstanding and the correction is a tube of zinc oxide with either size of Maalox.


From bettyp@a-znet.com

HI JAMIE,

I JUST GOT DONE READING THE RIBBON AND APPRECIATE ALL THE WORK THAT GOES INTO IT. YOU SAID YOU WERE CRYING AND DEPRESSED ALL OF A SUDDEN AND THOUGHT YOU WERE OVER THE PASSING OF YOUR MAMA. I HAD THE SAME THING HAPPEN TO ME WHEN MY MOMS ANNIVERSARY DATE GOT CLOSER, I WAS CRYING EVERYDAY FOR NO REASON AND REALIZED IT WAS CAUSE THE DATE WAS CLOSE. YOU NEVER GET OVER MISSING THEM, IT JUST GETS A LITTLE EASIER WITH TIME. I STILL GO TO THE CEMETARY AT LEAST ONCE A WEEK TO SEE MY PARENTS AND TALK TO THEM. I MISS THEM SO MUCH AND DAD HAS BEEN GONE FOR 14 YEARS NOW. I WAS ALSO SORRY TO HEAR ABOUT NICK FAINTING. I HOPE HE IS ALOT BETTER NOW. I MISS NOT TALKING TO ALL MY FRIENDS I HAVE MET THROUGH THE GATHERING PLACE AND AT THE GOF IN 2001. WE HAVE ALL SEEMED TO DRIFT APART AS OUR LOVED ONES HAVE PASSED ON TOO. I KNOW WHAT A CARING AND WONDERFUL PERSON YOU ARE. YOU HANG IN THERE AND HAVE FAITH THAT GOD WILL SEE YOU THROUGH WHATEVER YOU NEED HELP WITH.

LOVE AND HUGS

BETTY P


From MLAndr216@aol.com

Hi! I received the latest copy of The Ribbon. Thank you.

My husband of 53 years started having memory problems at least ten years ago. However, the last couple of years these problems have accelerated. The AOL Chat and The Ribbon and various books from the library has helped me understand what is going on.

He has had two MRI's (1996 and 2003) and according to the doctors neither showed any strokes or reason for his memory problems. However, last November they put him on Aricept, which has made him more aware of his problems but has not helped his short-term memory at all.

December 2003 he had a hernia operation, followed two days later by a mysterious chest pain and passing out. Called 911. Day and a half in hospital, and no answers. But, he has definitely worsened since then.

For a couple of hours no one would know there is anything wrong, and then he will say something that makes no sense.

I have never used IM so don't know how this will come to you.

More another time,

ML


We hope you all have a warm and sunny Easter!!

Hugs and Peace,

Jamie and Karen

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