Volume 2, Issue 4
March 5, 1999
- Has difficulties with ability to talk, understand, read, write and gesture.
- Lacks ability to appreciate and interpret conversation.
- Information may be understood but not retained.
- Inability to think logically.
- Difficulty changing subject quickly.
- May understand only part of a conversation.
- Often knows what he/she wishes to say, but cannot find the words.
- May just need a cue to get started.
- May say a word but be unable to do the action (aphasia).
- Communication ability may fluctuate (often difficult late in day). This is called sun-downing.
- May lose train of thought in the middle of a sentence.
- Has no difficulty with routine questions, e.g. (How are you?), thus giving a false impression and resulting in our expectations being too high.
- Often forgotten and assumed not to understand, especially when the individual's verbal communication is limited or lost.
- Poor communication skills often cause embarrassment and result in a tendency to withdraw.
- Often senses the listener's lack of understanding and patience.
- Lack of self-confidence -- requires lots of encouragement and reassurance.
- React on what is heard, which may be incorrect.
- Sometimes mistakenly thought to be uncooperative.
Steps to Good Communication
- Be sure the situation is calm.
- Approach slowly and from the front -- do not startle.
- Get his/her attention first by touch, saying name, or eye contact.
- Speak at eye level -- sit if necessary.
- Speak slowly and clearly -- if repeating, use same wording.
- Do not shout or whisper -- this may frighten or cause suspicion.
- Avoid pronouns or slang -- it, she, there.
- Make use of gestures and visual aids.
- Allow time for response -- three to five minutes.
- Be sure directions are understood and completed before going on.
- Avoid direct questions, use statements.
- Avoid changing the subject too quickly.
- Do not substitute words for them -- you may be wrong.
- If there is a hearing problem, speak into their good ear or check hearing aid.
- Offer reassurance, encouragement, and understanding.
- Use non-verbal communication if you are not connecting verbally.
- Loved ones unable to communicate verbally are very often ignored.
- Silent loved ones communicate by emotion, expression and touch, hence hold their hand and smile while talking to them.
- When appropriate, consult the loved one about their care, let them make choices, and be aware of their need to participate.
- Allow plenty of time for loved one's non-verbal response.
- Be sure to include loved one in conversations.
- Offer lots of encouragement and support.
- Behaviour problems can sometimes be the result of frustration and not being understood.
- Don't tell the loved one you understand them when you in fact you do not.
- Never talk in front of the loved one assuming they do not understand, very often they do understand part of what is said and this could be very upsetting to them.
- Pass your learned skills on communicating with loved one to others who share in their care.
- Harsh glances are just abusing as harsh words.
- Ignoring a person can be more painful than isolation.
More information can be found at the Alzheimer Society of Ottawa-Carleton(Link: http://highlander.cbnet.ns.ca/asoc/care/comm4.html )
A Thank You to Weather91
The Ribbon has been blessed to have a wonderful young man, Kevin, AKA Weather91, to help us with our wonderful web site. He volunteered, last summer, to put this site together for us and did a great job! Over the last couple of months, in his spare time (???) he has updated the format and we would like to be sure that everyone has The Ribbon web site in their Favorites File. It is constantly changing so you should check it often.
The most recent additions are an Awards Page; yes, we are getting recognition! And a wonderful tool....a search button. There you can put in a search word and it will take you to the issues of The Ribbon that have information on that subject. We urge all to try it!
The Dedication Garden is a growing place where you can share memories of your loved one or someone who has impacted your life as you struggle through the maze of AD and caregiving.
The Guest Book section is also growing and is another touching place where both caregivers and friends leave words of encouragement.
The Ribbon web site is available to all on the WWW...address is: http://www.theribbon.com/
And, of course, for any newcomers, back issues of The Ribbon are available there for you to print or save.
Again, our thanks to Kevin for all his hard work...the web site would not have happened without his selfless efforts. Thank You, Kevin!!!!!
Karen, this site might be helpful for people filing their federal taxes...as usual, though, they should check with their preparers to be sure it's up-to-date law.
US Tax Code - Title 26.A.1.A.IV.A - Sec. 21. Expenses for household and dependent care services necessary for gainful employment(Link: http://uscode.house.gov/download/pls/26C1.txt )
In response to MARYMARYIM(Link: http://www.theribbon.com/issues/vol2issue03.php#ma ry )
To: E-Mail Box
I was the "chosen one" to take care of my Mother's affairs when she had a stroke in May. On top of that, I have a "Down Syndrome" younger brother living with her. Double Wammy! It was best for me to move back into my mother's home, which wasnt too difficult for me, being single. However, I was able to confer with her Doctor and Lawyer who in turn conferred with each other. Mom's will was opened and reviewed by the lawyer, although I wasnt able to actually view it. I was granted Power of Attorney and advised to use her money to pay bills for the house and my Brother's needs. Since she had excellent medical coverage, and became strong enough to come home, there were minimal medical bills to cover. The lawyer also advised me that I was entitled to a percentage of her income (social security, interest and dividends). That percentage was devised by the lawyer and agreed upon by other family members. I rarely write myself a check, as I am a working professional and am now saving money living in a mortgage free house, where I dont have to pay utilities. However, I have lost alot of my personal time, which hurts when there are others in my family who could help more but dont. Check with your lawyer, if there is one involved.....it may help you out too. Good Luck! ESKIMODEE
In response to MARYMARYIM(Link: http://www.theribbon.com/issues/vol2issue03.php#ma ry )
Hi.... My name is Linda.
I was a 'long distance caregiver' for a couple of years during which time my brother resided at home with my parents and was the 'primary caregiver' (He'd only recently graduated college when both my parents fell ill and hadn't moved out yet). (Dad suffered a partially paralyzing stroke and Mom was Diagnosed with Alz)
RE: Finances.... my parents owned two homes, had a stock portfolio and some cash.
The first and most important step we took was seek the advice of an elder law attorney. Each states' laws vary, so I won't get into particulars about how we went about transferring our parents assets.
It was all done, however, knowing that we were faced with the commitment to keep our parents in the community (at home) for at least 3 years as they would not be eligible for Nursing Home Medicaid until after such time.
(In NY, it just so happens they were still eligible for other assistance in the interim). In our family it was just myself and my brother. We got along for the most part and both had our parents' interest at heart. We have each made personal sacrifices which cannot be compensated financially.
At first, we only used funds from the money we derived from our parents' for expenses we incurred on their behalf. This included the hiring of attendants, medications, renovations to their apartment, as well as airfares for myself to and from NY to help tend to their needs, pagers for each of us, etc.
As time went on, we became cognizant of how the personal sacrifices we were making were indirectly affecting us personally as well as financially. Our lives before becoming caregivers were hectic enough. We each had our own set of responsibilities, obligations, individual goals and aspirations. These were all affected by the added responsibilities of caregiving. We not only had our parents personal day-to-day needs to tend to, but the maintenance and repairs of the homes, the paying of their bills, and the upteen other responsibilites of running their now, more than ever, needy household. Little by little our mindset evolved to the point that we realized when something needed to be done on our parents behalf we should try to hire it out if at all possible. Especially if by doing it ourselves we are taking away from something that is important to us or would affect us financially. In the same breathe... if it's something either of us opts to do ourselves, we should be compensated accordingly.
It has been a while since we took on this mindset and things that need to be done are being done far more promptly and efficiently than before.
For instance, when a repair was needed around the house, it would be put on a list of 'to do's ' . Nine times out of ten it was on the bottom of the list and wasn't done in a timely fashion. Now, if a repair is needed around the house, I ask my brother if he'd like to take it on. He usually prefers not to, so if it's something I can't do myself, I call in a repairman.
I have relocated and now live in my parents building to better manage their 'case'. (the needs have increase with mom's deterioration)
We have home attendants provided by the state, so my responsibilities do not include hands-on patient care. (diaper changing, bathing, cooking, cleaning, etc.)
I am compensated, however, as a 'case manager'. My brother, on occasion does repairs to the building, otherwise I am also the 'property manager' who gets estimates and hires out the work and oversees the contractors.
Taking all this on with 'job titles' enhances my productivity.... As prone as I had been to feeling overwhelmed by my 'caregiving responsibilities', I am now more apt to waking up and saying "I must tend to my job duties". It's a good psychology game to play with oneself. It helps to keep me 'objective'.
This 'technique' has been working out for my brother and myself. Where more than two siblings are involved it adds alot of complexity to the situation. Especially when the caregiving responsibility is left to only one. Each situation and family has it's unique set of circumstances.... but I believe there is always a compromise to be found...
Best of luck to you Mary.... If I can offer any additional input, please feel free to email me.
In response to MARYMARYIM(Link: http://www.theribbon.com/issues/vol2issue03.php#ma ry )
I HAVE NO HELP EITHER. RUNNING OUT OF FUNDS FAST. IF YOU FIND OUT ANYTHING LET ME KNOW. DAD HAS PROPERTY THAT HAS NO POSITIVE CASH FLOW BUT PREVENTS HIM FROM GETTING HELP.
Thanks for the newsletter.. It really is a big help to read messages from other caregivers. I was very interested in the article on aspartine and the symtoms it causes as I suffer from fibromyalgia.
You are really providing a great service to other caregivers. May the Lord bless you and yours.
Thank you so much for the Ribbon. I am a new subscriber and find it so helpful I am reprinting it twice, once for my sister who is the caregiver and a NH involved.
Twice for myself as a leader for the Arthritis Foundation in my area where I live. The info on sweetners was especially enlightning as I get headaches and discontinued using them.
I sometimes run into difficult situations with families but share experiences and it certainly helps. When someone dies, I've had people say, "What good did you do?". But I remember all the calls they made to me, and feel good about what I managed to do as long as I receive the strength. God Bless You both and your families.
HAPPY ST. VALENTINES DAY! DOLORES.:)
The article about the "ASPARTAME DISEASE," made me stop and think. I will talk this over with my doctors, and see what my situation is.
Thanks for the article. :-)
And thank you for the for the newsletter.You are appreciated. :-)
Aspartame - the Truth at last(Link: http://neuro-www.mgh.harvard.edu/forum/LupusF/1.6. 994.12PMAspartame-theTruth )
Please note the source of this Article is Harvard University
I thank you for the effort you must go too pr produce the paper for us. Sorry there are a few that aren't courtesy and give the change of address that you need but theirs always a few rotten apples in the barrel. keep me on the list.
I need all the help I can get. I made a list of my option in caring for my husband and they are limited. I cant get him into a state hosp cause he walks and not on last breath, day care out cause he wont get in car, I don't want to medicate him and would be arrested if i killed him..I do get 15 hrs. out which my kids have decided I need more so we will be making some changes for my quality time. Planned to give you encouragement than I sounded off. forgive me.
Dear Karen and Jamie, I wish I had the words to convey to you how important The Ribbon is to me. Every issue seems to deal with a problem I am coping with at the moment. We cannot plan ahead even one day because each day brings new twists and turns--Hubby falls suddenly and ends up in the hospital, or he needs stitches from hitting his arm on the car in the garage, or his blood pressure is 200/120, or his wrenched shoulder requires visits by a physical therapist, etc. In spite of all these maladies, I miss most his intelligence and his personality--they have slipped away. Even though I have grandchildren, sometimes I feel like a single mom with a 4-year old. I am blessed by having a daughter and her family living one mile away. They give me pleasure and moral support--just like The Ribbon. A million thanks. B315
Dear Fellow Caregivers and Wonderful Friends:
Without you I could not have made it through the last year of my mother's ten-year bout with Multi-Infarct Dementia or Alzheimer's. It has been a long ten years, starting with her depression and rage over having things taken away from her: not only her memory, but her beloved car and freedom, her checkbook, her credit cards, and nine years down the road, her good jewelry (which she would throw in the trashcan on occasion). It was a denial process in the beginning, both on her part and on mine, and when she became incontinent she would refuse to wear Depends. This went on for several years before they became a routine. The last year, bathtime became a nightmare, and the last couple of trips to the beauty shop (which we both agreed was important) became a time of not wanting to be shampooed. She would dance in, but when it was time to be shampooed, she would jump out of the shampoo chair. The last visit, (2 days before she had the heart attack and fell and broke her hip on December 10th) she luckily was in good spirits and agreed to have "the works." She had been combative the last couple of years and I had learned to duck, and was able to accept this because I learned from "the group" that it was common. She was in restraints when hospitalized five years ago and during her final illness in the hospital. At one point during the last hospitalization, it took three nurses, me, and a male nurse to subdue a little bitty 88-year old woman who could not have weighed over 75 pounds. This was the saddest part of the whole thing, that she was fighting to the very end. She was brought home after the hip surgery proved to be to no avail, and hospice was called in. She had pulled every tube in her body out and they said she could not possibly last very long. Her arms were a mass of bruises from pulling against restraints to keep her from pulling the tubes out. Hospice put her on painkillers and melloril in addition to her restoril and trazadone and were planning to put her on a pain pump the next morning (which she probably would have pulled out too), but in the middle of a terrible storm on January 2nd, she finally was released from her misery and died. This was the shell of the adorable mother I had been so close too. She still communicated through her piano music up until a week or so before she fell, and she still had occasions when she would make jokes. She had told me my grandmother had been here and was coming back to see her and spent most of her last weeks talking with the deceased, so she was already more in that world than this one.
I took my retirement two years ago because the stress of work and home became too great. I was caring, not only for mother, but for my aunt who lived around the corner and was suffering from emphysema and osteoporosis. She died last June. The last year would have been unbearable if it had not been for the excellent advice from the support of my wonderful fellow caregivers. God bless you all for helping us on our final lap through this journey. I will never forget any of you or your kindnesses.
It was with great shock that in the midst of this I learned that our "Alzheimer Jane" had suffered a heart attack on Christmas Day. I understand she is well on her way to recovery and I have much to thank her for; not only the help in our support group, but also for being online during the day and available for IM almost all the time. She is truly remarkable.
Thank you all for your support and kindness and the laughter you provided along the way. The laughter is what made it all bearable.
With hugs and gratitude to all,
Hi Karen and Jamie. As I quietly sit here at my computer this morning, enjoying and valuing The Ribbon, Volume 2-3, I am thinking about the other 399 or so people who do the same, and about the two of you who labor to make that possible. I'm sure that the inputs you receive from others are invaluable, but pulling it all together and sending it all out, is no small effort. As Rita expressed in this latest issue, "thank you" seems like such a little thing to say, but behind each expression of thanks there must be many heartfelt feelings -- and probably many deep feelings felt by others that never GET expressed, as we each read and identify with some part of the newsletter. So, I'll take a moment to add my sincere thanks to both of you for all the time and effort you put into getting The Ribbon out to all of us.
And hang in, Jamie. Yes! We DO need to share with one another when we are hurting. It is so easy to pull in and think we should not do so. I, too, have been there. And even though I no longer deal with the challenge of Alzheimer's on a daily basis, I still find the concept a vital one in my life. I'm sure your sharing in the newsletter will be helpful in encouraging others to do the same. All the best to you both. Pat Miller
Hi! Hope someone can give me some information. I am caregiver to my AD Dad. His doctor has never diagnosed him, but I know it is what he has. I worked several years in a retirement center. Biggest percentage of residents had AD. When Dad was in the hospital several times, the nurses pointed out he had AD. Told them to tell the dr., because I was aware of it. He has him listed as AD tendencies. Since I worked in a retirement center, not a nursing home, was not familiar with last stage much. Then I got the ribbon telling of the symptoms of the 3 stages and Dad had every symptom in the 3rd stage. (including the no reason for his weight just dropping). Had others from the others too.
I know AD patients do strange things from time to time, and it can last a few minutes to months. My Dad was never much of a talker, so not sure when the disease started stealing his personality. A few months ago, he started rambling and saying the same things over and over. Hasn't done that for years. Then 3 days ago he got very strange. He is talking to imaginary people. Some names are familiar, so know he is at work. I never heard of this imaginary friend conversations. I have met a wonderful man on line and he answered a pen pal ad I ran, because he had taken care of his AD father for 9 years, before his father died. He said his father also talked to an imaginary friend. Is this something common for AD people? I was just wondering if any other care givers have experienced this. Thanks for your time. Psears123
Hello--just wanted to thank-you for a most informative newsletter---I must say that I really look forward to it. Just knowing that there are others that share in our heartaches and tribulations mean so very much. I feel a special bond with all that care for their loved-ones. No one truly knows, unless you have been through the situation, just how trying it can be.Sometimes I think "How can I go on---where am I going to find the strength"---but it comes, ---it has to come--God Bless! love, pianokf
Well, the person who is suffering with this dreaded disease is my father-in-law in S.C. My husband has not come to terms with him having it or cannot even talk about him, in this condition, without getting upset. I don't know what to say or do other than just give my support. I tell him that at least he is not suffering in any pain, but there is mental pain. He said he just can't think about the day coming that his dad doesn't remember him. We are in another state, so very difficult in terms of helping out with him. His mom says she is not going to worry and taking one day at a time, but it is taking its toll on her. Do wish that we could get back that way sometime in the near future to give our support and help. Thanks for newsletter. I just hope and pray they find a cure for this disease. My father-in-law is on so much meds., it's enough to make him confused!
Please, be extremely patient with me, this is a very lengthy letter, but I really, really feel that it may need to be put into the Ribbon. This is extremely important, to anyone and everyone who may be, may be thinking of, or even has a friend of a friend of a friend.... that is or may be thinking of taking care of a loved one with Alzheimers, or any life threatening illness. Do you get the idea???
My mother-in-law, a very dear, dear person to me and my family, has this dreadful disease. She was admitted into a hospice facility in April of 1998. Her prognosis was not a good one because she is in the last stage of Alheimers. But, as we all know, it is a very difficult disease for doctors to be able to diagnose just how long they can live in this stage, especially, if they do not have any other complications or illnesses. My mil is 93 years old. She has lived a very long and prosperous life, but my friends, the last year has had no quality of life. She was released from the hospice facility in December of 1998. The reason being, medicare has very strict regulations about hospice, alzheimers, and other terminal illnesses. Basically, you have to die within six months of the day you entered a hospice facility. Which, if you have any experience with a loved one in the end stages, you know, is a very difficult diagnoses. Only the good LORD up above is the only one that can decide your fate. Since my husband and I have admitted Grace (mother-in-law and to whom I will refer to here on out) into a nursing home, we have experienced several things that we feel as inappropriate to her wishes. And please, understand, that this is a particular facility, not all facilities. They have ordered meds in excess of $600.00 that the nurse later realized she was unable to receive, due to advance directives, which I will explain later in this letter, but were IV meds that had to be mixed, therefore, you are unable to receive a refund. This my friends, is a mistake made by the facility in this matter. Other experiences are listed as follows, but not limited to:
Force feeding- We all know that in the last stages, eating becomes difficult, we resort to pureed foods, baby foods, ensure, etc. BUT, the pt is unable to speak, therefore cannot tell the person feeding them to stop. As we all know, babies will eat until they vomit.
Incontinence- we have all changed diapers. You do not let a baby stay wet, or keep feces in their diapers. But on many visitations, have smelled the odor of an old diaper, or a dirty one. This is extremely unhealthy.
I could go on and on and on.... but will get down to it.
Most private doctors will not follow a patient to a nursing home, due to the fact that most nursing homes have their own physicians. The doctor for this particular facility, believes in prolonging life as long as possible, believes that alzheimers is NOT a terminal illness and that he can cure this disease. Let me explain: I am cutting this very short, but to the point. Basically, this is the conversation. I am the doctor, and I know more than you and anyone about alzheimers and it is not a terminal illness. Hospice is for cancer patients only, who have less than 6 months to live.
You know nothing about the disease. Then the secretary got on the phone to tell me that Grace was kicked out of hospice and that I was stupid and knew absolutely nothing about it. Now, my mother in law was never kicked out, believe me, medicare stopped paying, the private charges were more than $5,000 per month, this we/she could not afford. Decided to move her to the facility where she is now, and regret not leaving her at hospice and paying the $5,000 per month.
Well, let me tell you, I know enough to know, that it is a terminal disease, and dealt with it hands on, as I took care of her for a period of time. I could go on and on, but will stop here, I think you can relate this far.
Please do the following for your loved ones.
Have a will, have a living will, buy long term care insurance, check and recheck facilities, contact your state ombudsman to see if there are any complaints of any kind against the facility you are inquiring about. An ombudsman is a person who handles complaints for a family or patient, who has any complaint or concern against any facility. You can get this information from your local alzheimers chapter. Have a power of attorney. Put your wishes in writing, hiring an attorney if necessary, and make sure that on admitting any loved one into a facility of any kind you have this living will with you, and that it is placed in the very front of the chart, where it can be seen first thing. It is a legal binding document, and the facility or facility doctor cannot go against these wishes, they will face charges of negligence, loss of license to practice and more. Just remember, "you have the right to die if you so choose", "failure to thrive", "quality of life", these are all terms, but probably the most important terms you will ever hear.
Fill out those Advance Directives in detail, take up all the time you need, take it to an attorney if necessary, you have these rights!!! do not let the facility rush you or tell you that they will call the responsible party before they administer any meds or extreme measures, THIS IS NOT TRUE, if the "medications restrictions" is not marked and listed in detail as to you or your family members wishes, they can and will sustain life. They will find any and every way around it, so have those power of attorneys, living wills, advance directives executed and in full force before that loved one gets in the door. If you do your homework and pay attention to detail, they cannot even give your loved one ensure if you so choose, and yes it is considered artificial nutrition, and also causes constipation, which is very painful for your loved one. Ensure is very high in calories and given in excess, as with Grace, will cause the patient to gain weight. This particular doctor used this to his benefit to say he was making her well because she was gaining weight. WRONG, you cannot cure alzheimers by making a patient gain weight. He also took her off of her Haldol, which kept her from being agitated and pshychotic. He says she is more active and alert. Sure, she is agitated and now phychotic again, she keeps putting her legs throught the bed rails and scrathing them up, gritting her teeth and reaching for the air. Is this alert and active, or agitated and phsychotic?? This poor woman can not even speak and let us know what she is feeling. Can we do anything about it?? YES, and have, the ombudsman is working on this case as I type.
This has been the most stressful week of my entire life. I would rather have multiple babies and stay in labor for days than to deal with this situation, and my friends, I do not take pain well. LOL
Also, I have finally decided what I want to be when I grow up, LOL (am 35). I have decided to go to school to be a para legal, and continuing to go to school to be an Elder Care Attorney, if at all possible. Big dreams? ya betcha, but am sick and tired of this country treating our Senior Citizens like they do not exist when they can no longer work and pay taxes, and Medicare not paying for extended care treatment for alzheimers patients. After all this disease, shrinks your brain cells. Is this not terminal?? YES, without a brain, can you live?? NO. How can this doctor say it is not a terminal illness?? Plainly put, he knows absolutely nothing about it, in my opinion!!
Mom and Dad always told me I would make an excellent attorney. Should have listened when they were offering to pay, LOL, but seriously.
We are out of room again. We wish to thank you all for your contributions. We know that you all are reading the whole newsletter. LOL Your answers to each other are inspiring.
Next issue we will have responses to our Special Issue--Memories of Jane.
Hugs and Peace,
Karen (KMenges581@aol.com (KMenges581@aol.com))
Jamie (DRMOM1955@aol.com (DRMOM1955@aol.com))
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