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Volume 7, Issue 3
February 16, 2003

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

A question has come to my mind lately as things are on a downward turn with Mama. When do you know that it's time to no longer seek "emergency" treatment for your loved one. This is an end of life decision to no longer seek medical treatment when an illness hits or has continued to progress.

My brother, Andy and I have been trying to discuss this issue this weekend. It is such a hard thing to bring up in the first place and secondly, to try to choose a circumstance when you want to say "enough".

Mama isn't at that time yet but we just know that it is coming and sooner rather than later it seems.

Mama's congestive heart failure is flaring up again and it is really causing her problems. She recently fell 7 times in one night. She gets up and she falls. I told her not to set one foot on the floor without calling me in there first, but with the brain injury she doesn't remember. Needless to say, when these nights happen I don't get any sleep. I have taken to sleeping in the recliner in the living room so that I can see right in to her bed and can hear her when she starts to get up. She gets up because she says she is restless. I think the fluid is making it hard to breathe at night and she does not exactly realize what is waking her up.

When she came home from rehab about 3 weeks ago she was in better physical shape than she had been in in many years. Today she has regressed to worse than she was before her accident.

I sometimes think she has just given up. If this is the case, when do we as a family give up or decide to let nature take it's course?

Jamie

How to Help Your Loved One when She Denies She Needs Help

by Mary C. Fridley RN, C

You've noticed Mom wears the same clothes day after day, isn't bathing, and is wetting herself and hiding the evidence. It's also obvious that she's not eating well and forgetting to take her medicine. You're concerned but don't know how to approach her, after all, she tells you what to do, not the other way around! When you inquire about how she's doing, she replies, "…just fine, thank you". You offer suggestions to help but she gives you "the look", you know the same disapproving look she gave you when you were a child. So, your dilemma is that if you confront her you risk insulting her but if you don't she may become ill or in danger of harm. Anyway you look at it you're going to be the bad guy.

Denial about the need for care usually comes from fear of being ill, getting older, embarrassment, or of being 'put in a home'. Try to identify the fear and address it compassionately. Never make a promise you may not be able to keep, especially " I'll never put you in a nursing home". Nursing home placement is the last thing any of us want for our loved ones but it may be the safest environment. Instead, tell her that you will do everything possible to see she is taken care of.

Choose a quiet time to talk to her and avoid talking when tempers are short or you're feeling frustrated. Avoid accusing her of not eating, it will only lead to more anger and denial, just keep telling her that you love her and are concerned about her well being. Because the older generation is less questioning of what physicians tell them, use him or her as an intermediary whenever necessary. Ask the physician to talk to Mom and write down her health problems and a 'prescription' for help or services.

Always encourage your loved one to be involved with her healthcare. Collaborate together on a journal. Include day of diagnosis, daily feelings, frustrations, highs and lows, and results of appointments and tests, etc. Also include conversations you've have. Use the journal as a reference to remember what was said or done. It's important that writing take place at the time of the experience or immediately after and that your loved one does the writing. Keep your own journal too. Use it as a dumping ground for pent up emotions and frustrations. Be sure to include those happy and humorous times as well.

Sometimes you must make difficult decisions that your loved one will not agree with. Step back, look at the situation and ask yourself, "Is she safe where she is now?" "Does she have the opportunity to live life to the best of her abilities?" "Are my emotions getting in the way of rational thinking?" When you keep her safety foremost in mind decisions are easier to make.

Witnessing changes in an aging loved one is difficult and role reversal is inevitable. Approaching it with empathy and concern for safety will make decision making easier.

God Bless.

Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.

Caregiving Quiz

How SMART are you? Test your caregiving IQ.

Source of survey:
http://www.solutions-online.ca/consumer/solutions/index.html

Solutions magazine Vol. 4, issue 4.
Article: "Be a Smarter Caregiver."

For each of the following questions, pick a number from 0-3.
0=never, 1=sometimes, 2=most of the time, 3=always

___ I try to schedule my caregiving activities along with the rest of my responsibilities.

___ I realize that I can only do so much each day and don't try to do too much.

___ Taking care of myself is still important to me, and I take time to eat well and exercise.

___ I try to get at least seven hours sleep every night.

___ I keep a care diary, which contains important information on medical visits, drugs, ets.

___ I am open to suggestions on my role as a caregiver and seek out advice.

___ I share my frustrations and challenges with family, friends or a support group.

___ I can rely on family members and others to do their part.

___ I am not afraid to ask the doctor/health professional questions.

___ I have investigated options, such as mibility aids and safety devices, that will make life easier for my loved one.

___ I always involve my loved one in any care giving decisions.

___ I have taken the time to learn about my loved one's medical condition.

___ I try to emphasize the positive and relish the good moments as they come.

___ I am realistic about my loved one's condition.

___ Every so often, I take some time to relax or pamper myself.

Total:

0-15: Poor:
You need to smarten up your caregiving skills now, before you burn out or do some harm to your loved one!

16-27: Not Bad:
You realize what you should be doing-now you need to work on doing it!

28-39: Pretty Good:
You are a smart caregiver, and probably doing the best job you can!

40-45: Perfect:
You should be giving lessons in caregiving!

Thanks to sfgh123@hotmail.com

In Passing: Those We Must Remember

It is with great sadness that I write to tell you that I received word from Superscan1, or Helen to us, that her husband passed away a few weeks ago from what they now believe to be heart problems.

When Helen first visited us, she and her family had been informed her husband had Alzheimer's. In her email, Helen credits her online friends at The Gathering Place, the help, strength, support and information to deal with that diagnosis, yet know that it was acceptable to question information if it did not seem correct.

Helen states the loss is difficult, but she is ever so grateful to have had our support and love to help her through.

Please join with me in expressing your thoughts and sympathies to Helen and her family during this very difficult time.

Love Always,
Linda
Linda@theribbon.com
The Gathering Place

Dear Friends at The Ribbon;

My sincere thanks for all the support I found in your emails these past years. My husband Eddie ended his eight year (+?) journey with Alzheimers on Jan. 19th, peacefully holding my hand as I said goodbye for both of us to our 52 year life together.
I am resting a lot, not from the ending, but from so many years of being in control of his care and my emotions. It is hard but important for me to block out the picture of the ravaged Eddie II and bring back memories of the original Eddie I. I am putting his minivan with ramp up for sale. I have removed the wheel chair, the oxygen, the air mattress, the reclliner chair from our home, and now the time has come to remove The Ribbon.
I know you will each have many special joys, not just exasperations and trials, as you accompany your loved ones down this unique path. I wish you strength and "the courage to make your life a blessing". May God bless and restore you.

Rosalie--- "BubbieRG"

Clinical Trials

The following trials are now available in the Alzheimer's Disease Education and Referral Center's Clinical Trials Database (http://www.alzheimers.org/trials/index.html), a service of the National Institute on Aging.

* NEW! Cholesterol Lowering Agent to Slow Progression of AD (CLASP) - sponsored by the Alzheimer's Disease Cooperative Study and funded by the National Institute on Aging. This study, at 40 sites in the U.S., seeks participants with mild to moderate AD to test the effectiveness of the cholesterol-lowering statin drug simvastatin in slowing AD.

* Updated! Treatment of Agitation/Psychosis in Dementia and Parkinsonism (TAP/DAP) - This study seeks patients with a primary dementia (probable Alzheimer's disease or dementia with Lewy bodies, also now includes Parkinson's disease with dementia) complicated by coexistent parkinsonism to test the efficacy and tolerability of quetiapine and donepezil, used alone or in combination, to treat psychosis and/or agitation.

You can also view the records on our web site at http://www.alzheimers.org/trials/basicsearch.html - click on "View All Trials" and select the trial you would like to view.

Email Bag

From Currby4@aol.com

Hi,

You wrote about the $200. for respite care. I live in PA and my mom qualifies for a program thru the Area Agency on Aging. It is called the PDA waiver program. Thru that program I/mom receive 7 meals per week, diapers, ensure, any preventive creams needed, bed pads, hospital gowns, and an aide that comes in 2 times a week for 3 hrs. AND...... to my surprise nursing home placement for respite care. Last summer my family and I got to go on a 2wk vacation ..........normally they go and I stayed home with mom. It was the best 2wks of my life.

I hope people look into things like this. At first I felt really guilty going out while someone else took care of mom........ well after a few talks with mom's caseworker I felt better and surely enjoy my 6 hrs. a week. I have been taking care of my mom for more than 10 yrs.

Thanks for listening and hope this helps someone.

Laura

From Superscan1@aol.com

I would like to thank all the people in the gathering place for the so wonderfull companionship when we were told in Jan of 2000 that my husband had alzheimers. He had had carotid artery surgery, on both arteries and we now know he had heart attacks that somehow he hid without telling us how he was feeling. Without the gathering place he would have died thinking he had alzheimers. Listening to your stories made me begin to wonder if he was wrongly diagnosed, as he progressed instead of regressing.

I gained so much knowledge and compassion and learned a great love for all of you who so givingly care for your loved ones. God may have a purpose for teaching me. It was a very hard lesson as accepting alzheimers in my husband, who never found anything he could not accomplish, was so difficult for all our family.

Then when he could again add numbers etc. I questioned the diagnosis of alzheimers, even though he had had all the available tests prior to the diagnosis. Without you at the gathering place I would never have been able to do that. He lived this past year of 02 feeling quite sure he did not have alzheimers. Then in Nov. of last year I told his family doctor, I think he has heart problems. He gave him an EKG and sent him straight to the Hospital. He had congestive heart failure,and was so serious by that time they could not operate. He had become so weak by that time that he could hardly walk. He had also been diabetic for several years. I had taken him evry month to the doctor and this was the first knowledge I had of heart problems being his main problem. However the doctor did have him on oxygen with his Cpap which was used to correct the snoring problem he had.

I lost him two weeks ago. with a heart attack. I know that many of you know how very devastating that is. I want to thank you for allowing me to come into your loving chatroom and for all the knowledge I gained from all of you. I think of each of you so very often and pray God to take care of each of you wonderfull people and those you care for.

Sincerely Helen Superscan1@aol.com

Next issue we will include some of the many remembrances we all shared in our Valentine's Day Rememberance of Alzjane198 chat. What a terrific time we had sharing and laughing and remembering. It was really great seeing some of the "old timers".

Hugs and Peace,
Karen and Jamie