Volume 2, Issue 13 - The Ribbon Newsletter

Volume 2, Issue 13
July 7, 1999

We are sending this issue out a few days early because Karen is going on vacation to Florida!!! I know you all join me in wishing her a safe and relaxing trip.

Care Tips for Men

More men -- husbands, sons, sins-in-law, brothers and nephews -- are finding themselves actively involved in caring for family members with Alzheimer's disease. Currently, about one third of all primary caregivers to the elderly are male, a proportion that is likely to grow.

Men face some unique challenges in caring for a wife or mother with Alzheimer's. They are often forced to learn new skills or behaviors which life, up to that point, has not required.

Becoming a caregiver may include taking over many tasks which women traditionally did, such as shopping, meal planning, cooking, laundry, and even personal intimate help with bathing and dressing. As a dementia progresses, responsibility increases and may be translated into frustration and stress, especially if a man has competing demands, lack of support or is experiencing his own physicial problems.

Support groups offer a forum for exchanging information, and a social outlet (a sense of not being alone) for people who are experiencing similar situations. Practical, immediate, relevant information is often available at these meetings -- for example, how other husbands manage finances, household chores, and the unique supervision of wives with dementia.

Remember, problems you face as a male caregiver are probably problems which others have faced before you. Their suggestions may be applicable to your situation, or may trigger your own ideas about possible approaches.

Generally, men do not have support systems that are as well developed as women do. Women are more likely to talk with each other about their problems, true feelings and ideas. A man, on the other hand, tends to limit the intimate details of his life to discussions with his spouse -- chief confidante, friend, lover, nurturer and partner.

A male caregiver whose partner is experiencing dementia not only loses this emotional support from his wife, but begins to provide support in her traditional domains. At the same time a man is losing his wife to dementia he is, in essence, losing his connection to a social world.

Men: taking care of yourself is important. Helping someone cope with dementia while you learn to meet the demands of caregiving can seem to occupy all your time and energy. Get enough sleep, eat well, exercise regularly, maintain social and church connections, reflect, talk and remember: it's okay to laugh too. Continue to do those things which have always given you pleasure, and both you and the person you're caring for will benefit.

A support group can substitute in part for lost social contacts. Group members have a first-hand knowledge of what you're experiencing. The meeting can be a place where feelings of frustration, grief, despair, discovery, acceptance, and even humor, can be expressed. Realizing that others have faced similar problems and discovered ways to handle them can make your problems more manageable.

Courtesy of the Marin County Chapter of the Alzheimer's Association
For more information about Care Tips for Men, please contact the Chapter's telephone Helpline at 703-359-4440 or 800-207-8679.

Nine A's for Alzheimer's Care

Arguments are useless and, in fact, make matters worse. Confusion, memory loss, and frustration are making the person behave irrationally and you can't "argue" them out of it.

Allow as much freedom and independence as possible, while keeping safety and comfort in mind.
Actions help when verbal communication may fail. Help the patient by demonstrating what you mean, or sometimes, by starting them in the activity.
Assume that the person may understand and hear what you say even if they are confused. Do not say things to others in front of them as if they are deaf.
Appreciate good moments or good days, even though the person's ability is not going to remain that way.
Appropriate activities help patients pass the time meaningfully and productively and reduce agitation, boredom, daytime sleeping and depression.
Agitation can be alleviated when the caregiver remains calm, reassuring and respectful of the patient's feelings.
Adults with disabilities are still adults. Mental level is not always equal to social level.
Adapt the task to fit the ability of the patient. Break down the activity into separate steps, or simplify tasks by eliminating parts that could be frustrating.
Assessment is ongoing. What is safe and effective for now, may not be so at a later time. Keep watching and reevaluating.

Adapted from an article appearing in the Southern Tier Chapter Newsletter.

8 R's in Alzheimer's Care

Routine will help someone with AD anticipate what to do next and what is expected of them. It sets boundaries that feel secure.
Rituals or life-long habits should be maintained. Don't try to break old habits. For example, if the individual never enjoyed crafts, don't expect to involve him/her in crafts now.
Reassess physical health if there is a sudden behavior change. A person with AD will become more confused, agitated or hostile when a physical complaint develops. Consider constipation or a urinary tract infection, etc. as the cause of the behavior disturbance.
Redirect or distract the person with AD. This can be accomplished by suggesting that it is snack time. When the person with AD asks to go home, say "in a little while, but first, how about a cup of tea and a cookie?" You will be surprised that the person will forget about leaving for a little while.
Real questions may be difficult to figure out if the person with AD has difficulty communicating. If the individual becomes agitated, perhaps they are telling you that they need to use the bathroom. Learn to read their body language.
Reconsider the behavior. Is it truly a problem? Does it present a danger for the person with AD? Or is it just upsetting you? Is talking to his/her reflection in a mirror, just like it was another person, a problem? Should the mirror be covered up? Only if the person appears to be upset or frightened by the reflection.
Respect is always the appropriate attitude when caring for a person with AD. Laugh with them, not at them. Never talk about them to another person in front of them as if they are not there. And remember, a person with AD will know how you feel by your body language and tone of voice.
Reassure the person with AD often that you love them and will care for them. A gentle pat, stroking their hair, and holding hands all say "I care for you." Think how much reassurance of love you would need if you were suffering from a dementia.

Courtesy of the Upstate South Carolina Chapter, Anderson SC.

The Ribbon Website

Hi guys!!
I wanted to let you know about the new and improved Jane Levy Alzheimer's Forum. The new forum is much easier to use. First of all, you don't need to register or log in or anything (yay!!). It's also 'asthetically pleasing' (looks good) and fits in nicely with the decor of the rest of the Ribbon site :)

I hope you like this a lot better than the last two boards (read: disasters) were. This is something Jane would be proud of.

PS There is no active link from The Ribbon to this new board (not now at least, it'll be in the next upgrade to the site), but here is a link you can distribute to the readers until then...

Jane Levy Alzheimer's Forum

I'd also like to let you know that I'm doing what I can to get that XoomBar thing off the tops of the all the pages in The Ribbon Online. The best way you can help is to email webmaster@xoom.com and tell him what an inconvenience it is to everyone. You can make a difference! :)

That's it for the site update as it is right now... If anything earth shattering arises, you'll be the first (er... second) to know...

Kevin

From BHostGrmLv

Hello Karen-- thought you might like to check out the
EMPOWERING CAREGIVERS SPOTLIGHT

Your newsletter has impressed me so....many times you write about things that have been on my mind....I have posted info several times in my newsletter and felt that it was equally important to spotlight THE RIBBON...I hope you approve.

Blessings to you in all that you and Jamie are doing.

IN LOVE & LIGHT
GAIL

E-Mail Box

From CAREVOICE

Thank you for adding my name to your eMail list for The Ribbon. What a truly heartfelt newsletter. You are providing such a fine resource for those who need this information and providing warmth and caring through your words online.

I look forward to receiving future issues.

Genuinely,
Brenda Avadian (Have chatted a few times under "bavadian")
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's

From SERENGETI

Hi! Keep up the great work girls. My best friend & I both have mothers w/ Alzheimers. My Dad has been battling cancer for a year but is seemingly better. My friend's Dad just had a massive heart attack and 2 strokes and is in the shut down process right now. How appropriate for me to receive the Ribbon that deals with the dying process. I will be passing this along to her tonight.

I was sure you had a web site which included old newsletters but didn't see it in this issue anywhere. Could you maybe publish it again or just e-mail me with it? Thank-you so much! Marcia

Karen! What a marvelous website!!!!!! and I thought your newsletter was great! It's one thing to receive & read a newsletter & think, "Thank God this doesn't apply to me" BUT when "it" all of a sudden applies to us it's really great to have this website to refer back to the "I remember reading..." stuff! In just a few short minutes I was able to find and print out articles from past issues of The Ribbon on elder law, nursing homes, feeding tubes, and the end. Thank-you! It is very obvious that the newsletter and website entail a LOT of time and from everyone involved! Thank-you from all of us! Don't you wonder where people turned in the age before the internet? Thank, God, for People like you all!...Marcia

From JRNYWMN

Hello to you all. I've been coming to the chat (not so much lately) since January 1997; and the thing that really stands out as we go through this part of our lives together is that there is never an end to the tears. Neither is there a lack of support from all the wonderful people I've met; and as much as I cry and mourn what Mom's going through, there is always someone who pops in and sends a hug or a comforting word. I just want to thank you for that. Ann

From Bobbi 191

Dear Currby4
I know the agony you are going through with your Mother and I wish there was something I could say to make it better. It is perhaps the hardest thing I have ever had to do in my life but basically I had no choice. I have some serious heart problems and it reached the point that I just physically could no longer care for Mom.

I checked all the homes and found one that was very neat and clean and unlike a nursing home. They are working on a new theory of having pets, birds, fish and lots of plants there. It makes it much more homelike. Mother is close to more of the family now and they can go see her often. The lady in the room with her is really nice and they are both very content there. They have all kinds of entertainment for them and Mom now thinks it is her house and all these people are visiting her.

Believe me I understand what you are going through. Just don't let yourself feel guilty about resenting how things are. We all went through a lot of the same thing and it is never easy.

Also just three weeks after we moved Mom into the home my husband had a stroke. I know God knows what he is doing when he has us do things because I could never have been able to care for Mother and him both. Take care Bobbi191

From O BCH BUM

Thanks for dropping me a note. I copied your name down last night and just hadn't gotten time to e-mail you. I had a blowout yesterday, melted in the 90+ Florida sun while waiting for help and had to run all the errands I was out to run then today! I just got in and am beat! I really enjoyed the group last night. I followed Spke in and thought it was a CFIDS support group. That's how I met Spke. I have CFIDS (Chronic Fatigue Syndrome) and one of the symptoms is what we jokingly refer to as fibro brain (fibromyalgia) or brain fog. I joke about it, too, but I am suspicious of whether CFIDS is really the sole cause of mine. My motor responses are beginning to be affected, and I get scared sometimes as I am all alone and 52. I keep trying to remember that I'm a spiritual being having a physical experience, not a physical being having a spiritual experience. That, along with a lot of humor and constant listening to motivation tapes keeps me going. I loved the humor of the group last night. I felt right at home immediately. Ya'll are obviously doing something very right.

My uncle by marriage died with Alzheimer's after he choked my aunt to death when she wouldn't give him the car keys. Of course he didn't remember anything about it. If a neighbor hadn't seen him driving around in his car and knew he was too far gone to drive I don't know how long it would have been until her body would have been found. Before he died several years later, he got more and more violent. We took him from home to home as he got kicked out of each one. By the time he died, there hadn't been a person as is normally recognized in his body for many years. He had always been a mean man and treated my aunt with meanness and her family (us) with contempt. Yet when he got sick there was no one to take care of him but us. After his relatives found out there wouldn't even be enough money to pay for his care, much less to be inherited they couldn't be bothered and vanished like smoke. Ironic, isn't it.

But I had a much more direct experience with caretaking from my years as a hospice volunteer. When I became a volunteer, it was very early in the hospice movement and we had a lot to do with creating it's present accepted practices. At the time I often had to put myself between my patient and the doctor(s). They couldn't seem to get it through their heads that a procedure that could give the patient a few more weeks and an excruciating death was unconscionable when to do nothing might bring death sooner, but relatively easy. They saw the dying process as a personal failure of theirs. The job was so stressful that we were sent into the Georgia mountains on retreat four times a year as well as met in support groups every week to discuss our cases and how we were holding up personally. Since our welfare had to be almost completely sublimated to the immediate and pressing needs of our patients and their families the drop out rate was high. I lasted over three years; that was longer than most. I still have some of the material we got during our retreats, and I will never forget some of the people I worked with--and many of my patients and various members of their families. Some were practically saints and others were absolute monsters, but most were merely human trying to cope and love as well as they could under very difficult circumstances--sometimes falling way short, but often caring for their loved ones with a degree of tenderness and selflessness that was nothing short of heroic.

So even though I'm more of a patient myself than a caretaker now, I remember the other side of the coin well. I would love to attend the meetings when I am able and get the weekly newsletter if my presence wouldn't inhibit the others who are there to get AWAY for a little while from all patients and neediness outside themselves for just a few minutes. Heaven knows they deserve at least that little bit, and I wouldn't want my presence to dampen that. I remember how that felt all too well to ever knowingly be part of the problem. You let me know if it's all right with everybody. I'll wait to hear from you.

Thanks so much, Karen. Even if the group wants to stay just present day caretakers, I feel like I've met some new friends! And I will completely understand.

Yours very truly,
Kate Beall

From LauraW64

We are at a crossroads with my Dad. I am writing this letter to see if others have any suggestions or comments. My Dad has dementia (the doctors say it is not Alzheimers, but he is being treated with Aricept and has many of the common symptoms of the disease) and my Mom died 6 months ago. Dad is in the middle stages - he still dresses himself, drives limitedly and can spend time alone. Nevertheless, he forgets to change his clothes, forgets to eat and cannot remember that he ate 15 minutes ago, among many other classic symptoms. My sister has since moved into our parents' house with her 3 young children to live with Dad. The problem is that although Dad needs someone to be with him at night (he panics when alone at night), he is fine alone during the day. He is not used to the kids living with him - he was not much of a Dad when we were young and probably doesn't want to start now! He basically doesn't want to feel "babysat" and he is lonely for people his own age. He is 65. He and my sister are resenting each other and it is building at a fast pace. We feel that one option is to have my sister move out and have someone come in at night to spend time in the evenings until Dad goes to bed, and then to sleep in the house. But how do you get used to a stranger in your house? Another option is to have Dad spend the day at a senior citizen type place during the day (although Dad is not as old as many of the people there) and then come home in the evening. We also thought that Dad could move into an assisted living place that could do his cooking and cleaning for him and keep an eye on things at night. We don't want him to have to move out of his home though. We're not sure how to solve this because we thought this would be a good solution after Mom died - Dad could live in his home and one of my sisters luckily was in the position to move in. We did not anticipate the resentment and we also thought that Dad's exposure to kids would be a plus, not a minus. Maybe we are being foolish to think we can escape the resentment. Will we go from one form of resentment to another? He really wants to stay in his home and we want him to as well - but what are others' experiences with strangers coming in? I think anyone who has been through this gets the picture. If you have the time, please feel free to e-mail me with any thoughts. Thanks so much for listening!

Best wishes to all!
Laura
LauraW64@aol.com

From Courheathe

Thank you for your current issue. The segment on dying was comforting. My aunt died on June 10 and I went through many of the "dying steps" with her. I am grateful that I was there with her. I was so close to my aunt, it is like losing my mother again but I am left with wonderful memories. pam

From I rx pts

In response to Currby4's note about how she could not put her mother in a nursing home I just feel that I must speak up.

I am one of those people that placed my mother in a nursing home. Do I consider that my sister and I are still care givers for my mother? Of course! She lives in the town that my sister and I grew up in. Most of her adult life has been right there as are many extended family members and friends. I wanted her in what is now my hometown. But the "family" found that quite intolerable. So she is in her own town. And no, it isn't easy. I wonder about her daily. I pay high phone bills to stay in touch. I travel and pay for hotel rooms to visit her. I try to make it on a monthly basis.

I guess that I wrote the first paragraph to try and defend that I too love my mother. As does my sister. But you see because we do love our mother. We want what is best for her. I made a vow with my husband at the alter when we married. We became a family that day. We had children and they enlarged our family. And you see that I believe my family deserves certain things also. First of all, my being a sane person. Not that everyone is nuts that takes in an ailing parent. But we are all different, and that is a choice only we ourselves can know. And we also have a responsibility to our spouses and children. They need to have a choice also. How many of us want to live our so called "golden years" in a nursing home. But then again I know my mother didn't want the dementia that she has either.

My mother herself had a mother with dementia. And mom didn't bring her into our home. She saw that grandma was well cared for. She visited grandma as often as possible. Grandma was lucky that we could find a live-in care taker so she could stay in her home. My mother lived in a home with a huge old staircase! It wouldn't work out. And finding a responsible caretaker for in the home didn't happen. But my parent's gave me a gift. They helped me learn responsibility isn't always easy. They taught me to value all my family. They encouraged me to understand priority needs and how to make compromises even when they hurt.

I don't want to sound angry in this letter. And I am afraid that I do. And I don't think you know that you sounded almost shaming to those of us that have come to the point of having to make a very hard choice and place a parent in nursing home. But as a fellow care giver I would like to be a supportive person to you and have you do the same for me. Please ask yourself at times. Am I losing sight of what is best for all included? Am I starting to lose my feelings for mom because I can no longer see my self as her child in her eyes? I got back some of those special smiles and a precious few times I have seen myself as a daughter in her eyes. And I have let her still have her sister and nieces and nephews be with her.

My sister and I made a very hard decision but I will believe forever that we did the very best that we could for our mother. It was a thoughtful, loving decision. Probably one of the hardest one either of us has ever faced.

Thanks for listening to another view of this sad side of life. We all care for our loved ones in different ways. But the love seems to be very universal.
Blessings to all care/love givers-Rita

From Piano kf

As you know, my mother passed away on April 27th---she was diagnosed with bone cancer the day before she died. I will have to take a leave for now, but I want to say THANKYOU so very much for all the support and prayers. It truly is a great group of compassionate people---I can't imagine going through the heartache with out all the wonderful information and prayers. God Bless you!!! Love, karen

From AGwynne50

I wasn't sure if this was how one is supposed to send messages for The Ribbon, but here goes...

Thanks to suggestions from BHostAC, I contacted the local Senior Services, who put me in touch with Respite Care Services. They linked me with a wonderful lady who does in home visits to seniors (for a small donation). Claire will stop in and check on my in-laws every day for 10-15 minutes just to be sure all is well, and will contact their doctor and us if there is a problem, while my husband and I are on vacation. This is such a relief to me, and after meeting her, I know they will be in good hands.
Just wanted to share that even a minor thing like that can be such a help for the loved ones and for one's own peace of mind.
Thanks, AnnaMarie!!

Andrea (AGwynne)

Editors Note: Please send any information or comments to The Ribbon by emailing either Karen or Jamie.

From CAREVOICE

I would love to take you up on your offer to share information.

My sixth book will be about caregivers humorous and joyful experiences caring for their loved ones. The purpose for this book is to give caregivers hope that there are moments of great joy ...especially when caregivers feel they've hit their darkest hour and there's no escape. I invite you to submit humorous and joyful experiences you have had caring for your mom.

Like my fifth book, "Where's my shoes?" My Father's Walk Through Alzheimer's, the sales proceeds will be donated to help groups and organizations that help people with Alzheimer's and their families.

If you wish to submit stories, please reply and I'll give you the guidelines (number of words, etc.)

Genuinely,
Brenda Avadian
(on the Alzheimer's chat as "bavadian")
The Caregiver's Voice
Speaker and Author, "Where's my shoes" My Father's Walk Through Alzheimer's

From Rich O'Boyle

This issue was particularly good. The first two articles are very practical and well-written. I would like to reprint them on my website with your permission. Will you allow this, or should I ask someone else? I would like to place them on the Transitions & Spirituality Channel.

Thanks so much for spending the time on The Ribbon.

Kind Regards,
Rich O'Boyle
ElderCare Online
http://www.ec-online.net

If you would like to send comments or respond to an email in The Ribbon, you can send your email to KMenges581@aol.com.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)