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You may ask yourself, "Now that Jamie has lost her two Grandmothers is she going to give up doing The Ribbon?" The resounding answer to that is a big NO! There are two main reasons I have for that answer.
The first is that I am still a caregiver for my mother, living next door, who is showing signs of Multi-infarct Dementia, along with CHF and COPD,and my husband, Nick has been diagnoised with "dementia" but no definite diagnoisis yet and he also has diabetes.
The second reason is that when Karen and I started The Ribbon, we both felt it was something that needed to be done so that others just starting out on the caregiving journey would not have to stumble around looking for answers like we did.
This newsletter has been a blessing to us. Your letters of encouragement mean so much to us. Just when we feel "burned out" and never want to hear the word Alzheimer's again, someone will send us such a nice letter telling us how much The Ribbon has helped them. That reminds us just why we started this newsletter and gets us determined, again, to help and inform as many caregivers as we can.
We invite you to send in any thoughts, comments, articles, poetry, recipes, and any thing else you might think is important enough to include. Remember, what you have learned, someone else might need to know. Share with us so that we can share with others.
Before I Forget
The PWiD's Perspective
This issue we are featuring the online journal of Chip Gerber.
In Defense of Incontinence Products
All of us are going to face care issues either with a spouse, a parent, or ourselves at some point in our future and the vast majority of us will be dealing with incontinence on one level or another. With our population aging as it is, it is imperative that we learn to alter our impressions of this level of care. Having said that, I suppose there is at least one question that springs to mind.
How do you do it?
The answer to that is: You just do it! You put on your bravado hat, take a deep breath, and you step in and do it. When that first 'event' happens you really don't have much choice. Someone has to clean them up. It takes a little time, a little confidence, a little set back once in a while, but ultimately you just do it your way and you will develop your style, your ritual, and your own sense of order to enable you to do it.
Lets face it, if there is reluctance to enter the caregiving role, the reluctance to clean the bottom of a parent or spouse flashes through the brain big time. Recognizing that our family members can no longer act as their own authority in this very private matter is a difficult one to accept as caregivers. We really get bogged down in worrying about their dignity when the issue isn't about their dignity at all, it's about safety and hygiene. We assume authority for the safety and the hygiene of our children without second thought and we don't worry much about their dignity while we take care of their very basic needs. We know their sense of self will develop in spite of their potty needs. There are certain tasks a small child cannot be responsible for and it is the same for a confused adult entering the mid-late stages of Alzheimer's. There really is little difference between the two groups.
We wouldn't allow a three-year-old to determine if they need diapering or not.
As difficult as it may seem to cross that barrier of privacy with our parents, the fact is, you already have these skills, you just have to learn to apply them to your elder's needs. Entering their space with authority and love and understanding is the key. This is why I encourage you to start entering their private lives early in the process. Instead of asking if they need help, just be there to give help when it's needed.
There are no easy answers but your attitude makes the difference in how successful the transition will be. People manage to cross this barrier all the time. I don't mean to minimize the problems caregivers face in entering this particular phase of care but perhaps it is time to examine some of the reasons we have for holding back on taking charge of this phase of care.
Here are a few of the most used reasons for avoiding that first step into the forbidden space. Please excuse my directness in shooting them down.
I can't put diapers on your mother, she would rather die first. Mom wore sanitary napkins for most of her adult life and she didn't die, she adjusted. As for Dad, well he didn't wear sanitary napkins, but I'll bet he wore a jock strap or two during his life and he probably adjusted to that too. If he was in the service he learned a lot about loss of privacy and anyone who has gone through childbirth or surgery adjusted to the invasion of privacy. These are old memory issues the Alzheimer's person can draw on. Also, their sense of wearing these products is less acute than you think because their brain is less attentive to touch and feel.
My husband is much too dignified to have to wear diapers. I could never do that to him. Is it more dignified to let him wet himself and then need help changing his clothes five times a day? Is it more dignified to keep him confined to his home than to allow him to continue to enjoy eating in restaurants or visiting family or taking part in events? Incontinence products take the worry out of the 'unthinkable.' Their dignity is viewed through the eyes of those who care for them.
I can't help my mother in the bathroom, it would be much too embarrassing for her. That makes sense as long as its less embarrassing for her to wet herself and the floor, leaving you the task of cleaning it up. Besides, helping her isn't about embarrassment in the first place it is ultimately about her safety and comfort.
Your father will never agree to wearing diapers. If he can't find the bathroom by himself, or know what to do once he gets there, the chances are he is past the point of being able to give you permission to use them. First of all you don't ask for permission. When I began using incontinence products on Tom, I had already begun helping him dress. The adult pad went into his underpants and became a part of his dressing routine. Wearing a pad took a great deal of panic out of getting him to the bathroom on time. The less panic I felt, the less panic he felt.
Your father knows very well how to go to the bathroom, he's just giving me a hard time. Dad probably has lost the ability to organize the tasks involved in bathing and toiletting. And I emphasize how confusing bathrooms can be. It's easier for them to deny needing to bathe or use the toilet than to deal with the confusion. If they're urinating in the potted plants and waste paper baskets instead of the toilet and they haven't bathed in a week, and you're finding soiled underwear hidden under the bed, then you are getting a very clear message from them. They can't do it alone anymore! Requiring them to continue to try without help is really unfair to them. They are being placed in a situation that is increasingly frustrating and if the response they get from family members is in the form of criticism or distaste, they also feel a sense of failure and incompetence. They aren't trying to annoy you, they are trying to maintain their dignity. Avoidance of a truly embarrassing situation may be the only survival tool they have left.
Before the wall-to-wall is ruined Mom, I'd say it's time to put Grandpa in a nursing home. He would never want you to do that for him. Well, chances are Grandfather wouldn't want anyone to have to do this for him, but Grandfather no longer has the choice, and will he feel better having a stranger do it for him in a nursing home instead of a family member in his own home? I guess that depends on the family member, and the attitudes they bring with them to the tasks. As for the wall-to-wall, well you'd be surprised how many people manage incontinent adults with wall-to-wall carpeting throughout their homes.
In fact you'd be surprised how many grandchildren help care for their grandparents. Just because there is one person in the household willing to do it doesn't mean that no one else can pitch in once in awhile. As my friend Linda said to her younger brother, who expressed reluctance in changing their mother's pads
"I am not the only one in this house. Our mother is not to be left sitting in her poop because you have a hang up about changing her. Get over it. She changed plenty of your diapers and this is not such a big deal. If I can do it, you can do it. I take care of her when I'm home but I get out very infrequently and when I do I don't want to worry about her developing skin problems because of your reluctance to make sure her needs are taken care of."
Linda, who is by nature a quiet but determined woman, said her brother just nodded in agreement and that was the end of discussion. As an added note, 'accidents' never happened while Linda was away. She said it was as if her mother instinctively saved that particular job just for her anyway. This from someone who couldn't identify her caregiver my name.
We can't go into our favorite restaurant anymore. Your Dad urinated on the floor in the men's room the other day. If Dad can still announce the need to use a public rest room, then there really is nothing terribly outé about accompanying him into the handicapped stall in the ladies room, or the men's room for that matter to help him manage the logistics of his clothing etc., and if need be, aim. As impossible as this might seem to you, people do this all the time. I would hazard a guess that most public places would rather you help your person than let them mess the floor or themselves. Incontinence products can be changed in the handicapped stalls as well as at home, although I longed for a sink in those stalls. Just make a point of traveling with your kit, a kit very similar to the baby kit you once carried. When I traveled with Tom I generally looked for the smaller gas station with the single toilet room which could be locked as a preference. This gave us greater privacy than the larger restrooms available in other places.
You might be amazed at how helpful and understanding people can be when they realize the problem your family member is having. Should someone object, well it is difficult to talk about Alzheimer's Disease with your family member present especially while they are aware enough to understand what you're saying. There are times when explanations are called for because the public often accuses them of being drunk or crazy.
A woman I met after a talk I gave, came up with an ingenious solution to this problem. She had business cards printed up, and when someone made comments about her father or stared at him in public places she reached in her pocket and handed them one of the cards. She found them particularly helpful when assisting her dad in public rest rooms. The caregiver has enough to do to get their person in the stall without having to explain why to a curious and sometimes judgmental public. She said it stopped all need for her to explain anything in front of her Dad, and the response was almost always supportive. And when it wasn't, her attitude was to ignore the ignorant behavior. Her card read:
My father has Alzheimer's Disease, a neurological disease that is slowly destroying his brain. He was once a scientist but he now needs our help in almost all phases of his care. Our family is trying to keep him a part of our world for as long as possible. Your understanding and support is appreciated.
If I help him he'll forget how to do anything for himself. Once our people can no longer manage their clothing, the faucets, the toilet paper, or know whether to sit or stand, or where to sit, they can no longer toilet themselves without help. They will not be able to relearn those things no matter how hard you try. There is only a one way street with progressive dementia. Instead of dwelling on what your person can no longer do, try to dwell on their needs for assurance, love, patience, and understanding. These are the things we offer our toddlers when they are in the process of toilet training. The course may be in the opposite direction but the basic needs of both are the same. Helping them without judgment does more to preserve their dignity and yours, than ruminating over the loss and the bother it brings to you both. Following closely on the heels of this comment however is the next...
If you didn't do everything for Dad, he might be able to do 'things' for himself. As if any of us are trying to make our family members so dependent they can't take themselves to the bathroom any more. All I can say is that it is time to invite whoever says that to spend more time with Dad. Be sure and tell them where the cleaning supplies are as well as his clean clothes, and you can be sure that when they ask Dad if he needs help he will give the same thing he gives you. No! Which brings me to this last point.
I ask Mom if she needs help but she always says no. If I leave her alone she ends up making a real mess in the bathroom. If you are waiting for them to give you permission to take charge of their care you are "Waiting for Godot."
The patient says 'no' to help with toileting because they are incapable of taking the question any further than the most surface levels of meaning. Of course they don't want help, they also can't evaluate that not accepting help translates into the inevitability of soiling themselves. They can't envision that clothing will have to be changed and they will have to be washed, or that the caregiver will have a major clean up task to do. They still believe they can do it on their own. There is no easy solution to this problem but lurking, stepping in to fasten snaps and belts, and pulling shirt tails caught in underwear, is a beginning.
I can't tell you how many times caregivers contact me in a state of total frustration because they've been called by the supported living unit which houses their parent, with complaints that they've pooped themselves again adding; "I asked if John needed help but he said no!" The caregiver is then faced with a race across town to get dad cleaned up. What sort of dream world do these facilities live in? Don't they have any concept of the level of help these people will need when they agree to let them move in? I understand that many of these facilities are not set up for chronic care, but until a transfer to a chronic care facility is accomplished what does this family do in the meantime?
I've said elsewhere in my web page, "Its just poop it isn't toxic waste."
Reproduction of this material is permitted with permission from: Beverly Bigtree Murphy, MS, Rehabilitation Counselor, Advocate e-mail: firstname.lastname@example.org
American Association for Geriatric Psychiatry
Alzheimer's disease is the most common cause of dementia (a condition of deteriorating memory and mental functioning) among adults age 65 and older.
The American Association for Geriatric Psychiatry has created several brochures that provide patients and caregivers with information on Alzheimer's disease, how to recognize its symptoms, and where to go to for help. The brochures are available on the AAGP Web site in both English and Spanish-and are free of charge.
You may link to the brochures at:
Its Spanish equivalent, "Enfermedad de Alzheimer: Entendiendo
Acerca de la Demencia Más Común"
The American Association for Geriatric Psychiatry
AAGP provides a referral service, whereby individuals can request the names of board-certified geriatric psychiatrists near them.
"The American Association for Geriatric Psychiatry is a national association representing and serving its members and the field of geriatric psychiatry. It is dedicated to promoting the mental health and well being of older people and improving the care of those with late-life mental disorders."
Government Program for Caregivers of Disabled Persons
To: President George W. Bush
This coming January, 2003, Karen Menges, one of the writers for
The Ribbon will become Mrs. Kevin Bradley. Karen all of us are
excited and happy for you and Kevin. We wish you all the best and
many years of happiness the two of you deserve.
Just for GP
(Just for General Principles - Get It!)
So much has happened in one short year! A year ago this weekend (October 5-8, 2001), a group of internet friends gathered in Nashville, TN for the 2nd annual Gathering of Friends. It was a weekend of respite, fun, and finding new and lasting friendships. It was also a year ago that, well, we entered into a confrontation across the seas with the terrorists trying to break our spirit.
A year later, even though terrorists failed in their attempt to tear down our great nation, we are stronger than ever. So is the group of friends who met a year ago. The online friendships which were made are now real and lasting, with enough love and support shared to last for several life times.
Even though a lot of the readers were unable to attend the 2001 Gathering of Friends, I would like to encourage you to take the time to take the time to reach out to an old friend, be it real time or internet and let them know you are thinking about them and how much their spirit means to you. Let them know how very special they have made your life.