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The Ribbon - Care for Caregivers
Issue 18
September 18,1998

I hope you are enjoying these last days of summer. We need rain here in TN but the good thing about it is I haven't had to mow the lawn in about a month. There's a small blessing in every negative thing. Ha


Strategies for Successful Bathing
by Anna Ortigara RN, MS

Assisting a person with Alzheimer's disease in taking a bath or shower can often be the most challenging task of a caregiver's week. Bathing can be a frightening, complicated and overwhelming task for many people in the middle and late stages of Alzheimer's disease.

There are a number of reasons why this activity can be so stressful. One is the vulnerability the person with Alzheimer's may feel when another person takes his or her clothes off. Another is the sudden change in temperature that takes place when the person enters the bath water or shower. Perhaps the person feels out of control and misunderstands the purpose of bathing. Perhaps, when a caregiver says, "It's time for you to take a shower," the person with dementia may think that he or she has already taken a shower.

In addition, the person with dementia may resist or deny needing any help. One key principle to follow in caring for people with dementia is to try meet the person at his or her level of reality. Experienced caregivers know that trying to force someone with Alzheimer's disease into rational, here-and-now reality often causes confusion and agitation. How can bathing be accomplished with the greatest success for both the person with the disease and the caregiver?

Here are some strategies:

  • Engage the person in the bathing activity. Approach him or her in a calm, gentle and non-threatening manner. Begin a social conversation instead of focusing on the bath right away.
  • Pick a time when the person is having a good day.
  • Plan the bath when you are not feeling rushed. If the person is uncooperative, try again later.
  • Consider giving the person a reason for the bath that makes sense to him or her. For instance, say, "It's time to get ready for work."
  • Schedule the bath at a time when the person is already engaged in a related activity, such as in the morning when he or she is in the bathroom and needs to change out of pajamas.

Prepare the room:

  • The goal here is to make the room as inviting as possible.
  • Is the light bright enough but not glaring?
  • Is the room temperature warm but not hot and humid?
  • Do you have all of the equipment you need in advance so you don't have to leave the room after you start the activity?

Understand the person's bathing routine:

The more familiar and comfortable the activity, the greater the likelihood of success. Knowing about the person's past habits may be useful.

Some things to consider are:

  • Did he or she generally take a shower or a bath?
  • Was he or she always very private and modest?
  • Was there a preferred time of day or night in the past?
  • Would the person feel more comfortable and safe with a same-sex caregiver?
  • Sometimes a man is more receptive to a male caregiver than to his spouse or daughter.

Understand what is going on during the bath.

  • The idea here is to focus on the person's mood and behavior rather than the task itself.
  • Is the person becoming frightened or threatened?
  • Prevent agitation from escalating.
  • Praise the person and let him or her know that the task is going well.
  • Keep saying what you are doing in simple, step-by-step terms.
  • Go slowly. Moving quickly will probably result in the person feeling unsafe and out of control.
  • Give the person something to hold onto, such as a washcloth, towel or grab bar to lessen the feeling of being out of control.

Refocus aggressive behavior.

  • If the person begins hitting or striking out, it may be due to a perceived need for self-defense. Try to discern the person's anxiety when it is still mild and then remove the source of discomfort. Keep reassuring the person of his or her safety.
  • Consider involving an assistant who can focus on the person while you focus on the steps of the bath. Encourage the person with the disease to help as much as possible in order to promote a feeling of personal control over the situation.
  • Consider alternatives. Giving personal care to a relative can be challenging because of the role change it represents. For example, bathing one's father or wife is not part of the usual relationship.
  • Consider hiring a bathing assistant if the act of bathing is too physically or emotionally overwhelming to do alone. Possibly enlist the help of another family member who has a higher comfort level with personal care.

Published by the RADC 1998


Tips and Tricks

We recently had a contribution from a member about the "conversational circles" that our loved ones get into as their illness progresses. If you missed it, see Issue #14 and Issue #16 of The Ribbon.

My brother came up with another one. He told me to "change Mom's channel." Since he has been dealing with her and her illness for 4 yrs alone, I tend to listen to him. He is a very good guide on knowing just how to handle her.

This past weekend, Mom was particularly agitated and, despite myself, I got agitated too. So I left, telling her I would be back later. (She is still on her own.) What I did was go outside and sit on the front steps for about ten minutes. Then I went back in, gave her a big hug and acted as though I had just arrived. The difference in her attitude was amazing! Her channel had been changed! It worked like a champ!

Of course I realize that there will be times this won't work but it is worth a try, both for the patient and the caregiver. Maybe we should issue a LO remote!

From KMenges581


Special Requests

I have a special request, if you will please. Could you send a note to all in the room to say a prayer for my Dad. He under goes surgery tomorrow to put a defibrillator in. Thank you.

Sharon (Guydeen)

Sent to us on 9-17


I found this in our local Alzheimer's Newsletter....

Twelve Requests from people with Alzheimer's Disease:

Please:

  • Be patient with me
  • Accept me the way I am
  • Talk with and listen to me
  • Be kind to me
  • Don't hurry me
  • Consider my feelings
  • Remember my past
  • Remember my present
  • Remember my future
  • Treat me with dignity
  • Pray for me
  • Love me

From STSWILLIE


Happenings

A reminder to those who may be interested in attending the Gathering of Friends in October, 1999. You must respond by Email to LIZA 513 and Russell363 by October 31, 1998. That's 6 weeks away folks! They ask you to respond to both of them just in case of computer crashes or unforseen problems.

Disclaimer: This "Gathering" is being arranged by a group of friends. It is not sponsored by Better Health or AOL, therefore, we ask that you not discuss it in any of the chats as their purpose is to provide support for caregivers not to do planning. If you have need of any information you may email the two committee members mentioned above. Thanks for your cooperation.


E-Mail Box

From CKnox0911

Before I really get involved with my story I want to tell you what a wonderful job you do with this newsletter.....While you don't see me on line and probably don't recoginize my name I read and print every page. I have been guilty of failing to express my appreciation for the had work that goes in to getting this to all of us in this extended family of caregivers..... So before another thing is said*******THANK YOU VERY MUCH FOR ALL YOUR EFFORTS AND HARD WORK*********

I haven't participated in the chat for quite some time......it's not that I am uninterested but I really don't feel that I have much to offer and due to the fact that i don't deal with my mother on a daily basis my situation is slightly different.....My sister is the primary responsible party for my mother's health concerns....Notice that I did not use the word caregiver.....She will quickly tell you that she has young children and therefore doesn't have time to visit mother in the nursing home 500 miles away from where my mother has lived all her life... My sister moved mother closer to her home so that she would not be inconvienced......I have requested that she allow me to care for my mother....My children are grown so I would be better able to focus on my mother and her needs....my sister won't even respond to my request except to call other family members (my brother) and tell him that I am unreasonable...The nursing home didn't even know that there was a family member other than my sister.....It seems that to her the power she can exert in keeping my brother and myself away from my mother is what keeps her going....There a a number of other issues as well, failure to provide an accounting of the trust etc.....I have taken all the steps necessary short of a lawsuit to resolve this issue....it cannot be resolved by me or my brother.....The very idea of a lawsuit makes me ill.......and we haven't even begun to address the costs.....My sister has the benefit of the trust and it's money and attorneys for support......I have myself.... My brother and I both feel that the sooner the good lord sees fit to end my mother's suffering and grief the better off everyone will be...Let the sister keep the $ for the trust......

One recent morning my Champion Boxer who has been getting on in years could not get up and walk.......I had known for about 6 months that my friend Trixie's time was near.....I knew that day that we were going to the vet and that only I would come home.... Much as I loved Trixie I knew that I could not allow her to suffer.....The appointed time came and we went to the vet.....Trixie and I sat on the floor in the vets office on a cushy comforter and enjoyed each other.... The vet told me what I expected although I would have been most happy in this instance to have been wrong.... I took my good friend Trixie and held her in my arms and told her how much I loved her and thanked her for the time that we had together...and that is how she left this world.....with my telling her how wonderful she was and remembing all the good times and the bad times....but above all appreciating all that she has brought to my life for the last 10 years....Typing this now I have tears coursing down my face but I know in my heart that while that was one of the most difficult things I have ever done it was the right thing to do for Trixie....She was a large part of my family...the emotional costs that I paid by doing the right thing by my friend were small compared to all the many ways that she enriched my life and the lives of my children and others that were fortunate enough to have know her and see the twinkel in her eyes. She was more a part of my family and life then my sister will ever be.....

Isn't it unfortunate that what I am able to do for my friend and companion I can not do for my mother....I understand that many people disagree with my position....but it is never the less my point of view.....It is not the politically correct position but it is my position.....On one brave occasion I did express this view in the chat and can tell you that the reactions are the primary reason that I no longer participate....

I guess the bottom line in writing this is because you always encourage us to write and make the ribbon our own....... in telling my story or perhaps stories is more appropriate I would ask people to try to be alittle more tolerant of views that differ from their own.....it does not make them wrong just different....if nothing else it opens up a dialog that may not have otherwise taken place......this position may not be appropriate for everyone but I would be willing to bet that there is more than one person who has at least thought these things....

Lastly, I know that many of you will want to write and tell me how wrong I am to feel this way......I can assure you that I have thought long and hard.......this is not an easy issue.....it is in fact extremely painful and more than alittle emotional.....

Thank you again for all your efforts for the ribbon........and thank you for the opportunity to express my feelings on this very difficult issue...


From BetKai

You have done a really marvelous job with continuing Bill's work on this newsletter! It has really been a great help to me in caring for my Mother who has Alzheimer's. Recently my Mom suffered a stroke which made her unable to walk or even sit up without assistance as well as disabling her left arm and making her mental processes even more confused. I subsequently was unable to care for her at home due to the constant lifting and extra care her condition requires. Reluctantly, I placed her in the best nursing home I could find and she is doing fairly well there. I visit her daily and am still coming to terms with my grief at losing her and guilt at putting her in the home, but my overall health and attitude are making a good recovery from the low level to which they had sunk during the most trying times of being her caregiver. Well, to make a long story short(er), I now no longer need to cope with the day to day care of a loved one with Alzheimer's, so I am not really in need of your newsletter anymore. You may remove me from your list and send it to someone new who needs it far more than I do now. Thank you so much for your support!! --Betty


From Xray602

Mom will be 90 in November...you hit on the part about toooooo much foooooood on the plate makes them full before they start......it hit home so well......I found small portions on small plates is so much easier to handle...soooooo.....she eats a few more meals a day.....but life at the dinner table is not as feisty!! But......the old saying there is always room for JELLO......or any sweets is so true...... Thanks for letting me know I am not left at the dinner table alone fighting with mom to eat.......she consumes ever so much more in smaller portions......and with no fights.....

-anne


From Datel123

I can't tell you how excited I was to get your wonderful newsletter Karen. I sent it on to everyone online that I correspond with regarding Alzheimer's. I'm sitting here now knowing that I must get up and go to the nursing home but my feet are dragging because I'm not sure how much more of this emotional rollercoaster I can go alone. Its just too hard and then people have the audacity to ask you what is wrong with you/You feel like screaming "I'm watching my husband die slowly in front of me and can do nothing to prevent it","What could be possibly wrong with me?" I, m in the process of writing a book regarding the feelings and emotions from the prospective of watching a spouse slowly lose her husband but there are days its just too painful to write. It was hard enough living through it at the time, but when you write about it, everything comes back to you and there are many days I just can't do it. I really related with the lady about relatives that never showed an interest until now. Isn't it wonderful that we are dealing with this horrible disease, and then have to deal with close family members who neither cared if you lived or died before but feel now that they should have some say in the decision that was yours alone to make. My own 30 year old daughter is in total denial. I finally got her to go down there last week and when I flew out of the room shaking with sobs and had to go to the chapel her comment was, "Mom is sure taking this hard." Thanks for your wonderful insight to all of us out here struggling to just get through today.

Dean


From NANNAEDY

thanks for contacting me i was just surfing the net last night looking for support groups for different diseases that i have, heart disease, graves disease(THYROID) ,diabetes and my hubby fibramyalgia and m. faci. pain and happened upon the alzheimers chat ironically my dad had alzheimer's and we lost him at 90 yrs . it brought back many memories with him at home and i know how difficult it is for the family as well . i will most likely stop in on the chat from time to time and appreciate that your group is there for others with this disease. My dad died 20 yrs ago and we were really on our own at that time with a young family to raise because i was the youngest of my dad's family and i was also working 40 hrs a week and had my 84 year old mother with me that had a heart condition. My husband loved my parents like his own and that was a blessing for me. My dad was very mobile for his age and very big, tall but he could really get around and our biggest fear was that he would get out of our home while we were at work and he was alone with my mother . I am glad we have those memories of my dad and mom it taught my children to respect their elders and understand life, it sure made them all better adults today . We had no support group back then and really could have used one for sure. We had so many fears for him , and decisions to make in his favor. I was shocked to learn just how much professional people, doctors for one that had no clue of what it was like to live with an alzheimer's patient. I understand that it may be my turn one day with this disease because my dad had it and i developed everything else he had, and i am real glad that there are people out there like you. thanks again.


From Bdref

Thanks for sending The Ribbon. I try very hard not to talk at all about my AD mother who lives with me. I have found people are very critical of anything I say to let off steam over the AD situation, so reading your newsletter & connecting is very helpful to me. Keep up the great work - it is invaluable to we isolated care givers. B


From KatAttack5

In the most recent issue of The Ribbon, Margie said:

Also, my mom is functional enough to call me on the phone once or twice a day...and what am I supposed to say? I wish my life were exciting enough to support that much conversation, but it just isn't. I've found lately my fuse is very short and I am losing patience with her much more than I would like. I am not very proud of myself, but have not got my temper under control quite yet.

Margie, I have this problem when talking to my father, too. Because of his memory problems, it's difficult to make small talk--he doesn't remember what he's been doing lately, who he's talked to today, what he's had for lunch, etc. Since I can't ask him any questions, I have to do all the talking. I have finally found a way around this by asking him questions about his cat. Since the cat is usually in the same room with him, he will talk about how funny she is, how soft her fur is, etc.

He seems to be happy making conversation and doesn't realize (or it doesn't bother him) to talk about the same thing during each conversation. Maybe you can try focusing your conversation on something your mom likes so you don't feel compelled you come up with small talk yourself. I think, also, it doesn't much matter what you say; your mother just wants the comforting contact. Re: patience, we all lose our patience. Alzheimers wears us down.


From Irisco@airnet.net

Just a quickie to tell you how much I appreciate your newsletter. Haven't had much time to respond, but it does help reading all the notes from everyone... just to know I'm not alone. I could particularly relate to "Mary Jane" who says she's an only child. I, too, am an only child and dealing with my mother, who has been impossible all her life, but with alzheimers it's a zillion times worse. And, I too, have a WONDERFUL son who has absolutely saved my sanity the last few months. My mother has finally been placed in a small group home and we're still attempting to clean out her house, etc.... an absolutely monumental task in itself. And, yes, I do feel guilty! I could never do enough when mother was at home, and now I've delegated her care to others. She was still living in her own home (next door to me) and while I spent a lot of time with her, she refused to allow me to "stay", nor would she come to my house. However, NOW I KNOW that she's clean, sleeping on clean sheets, eating well (she's gained weight), and socializing to the best of her current ability. She is much happier now than when she was in her own home and I KNOW that I made the right decision... doesn't make it any easier though. Thanks for listening. Iris


From Uhootie

I want to thank you very much for sending me all the information today, it is very helpful. I would very much like to receive your email on whatever basic's you send it out. I am sure I will find it interesting and handy. I am having a very hard time with dealing with this situation with my father in law, he lived with me for 4 years. He moved in cause mom had a stroke and I was unable to commute back and forth my home to his and work at the same time. Mom passed away and he for some reason was happy or relieved I really don know. Mom was a better person to take care of than he was. He just wants everything done for him, he gets very depressed and has become forgetful and really needs help with meeds and dressing and cleaning himself. Well, he was in the hospital for depression and the doctors tested him and said he had dementia and was in the first stages of Alta. We just took him home and hoped it would go away but it only got worse. Sometimes people would say to me that he was just playing a game, there is nothing really wrong with him. Well, he had to go back into the hospital for depression and while in the hospital he stop walking and became much slower. They changed meeds and sent him to a rehab for two weeks. He did great, really great. Came home and on the second day fell down steps and made a very ugly bruise on his head, but he said it didn't hurt. While home he stopped wanted to go for walks, only wanted to move out and get his own place. The doctors at this point said he needs to be in a nursing home. Well, it took us a while to get one. Now he is in and complains about the food and people. But he plays bingo, cards, watches movies and goes for walks everyday. The nurse that evacuated him when he came in called me in for a meeting and said that all the reasons he came in for are gone it is like there was nothing ever wrong with him. I am so upset cause I really don want to take him home again cause I really believe he will do it all over again. And if that happens I will not have the funds to put him back into a nursing home. Medicaid has a two year waiting list.

I am so confused and don know if I, am, wrong or right anymore. Do you guys ever find anyone with the same situation. I would be glad to talk to someone and see how they handle there situation,

thank you again,
Barbara


Remember to keep everyone in your thoughts and prayers including our own Karen as she is sick with high fever. We always look forward to seeing all of you in the chats.

Hugs and Peace,
Karen (KMenges581)
and
Jamie(DRMOM1955)

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