Issue 21
October 30, 1998

Karen and I have been thrilled with the response we got to the nursing home question. We thought we'd do a Special Issue just for the responses. Look for it in your mailbox the middle of the week. Thank you FLYINGFGRS for coming up with that question.

Today's question is, When did you tell your children/grandchildren about their Loved One having Alzheimer's Disease, how did you go about it, and what did you say?

This page is loving dedicated to every Alzheimer's person who has ever been misunderstood...may God Bless ALL of you...

Alzheimer's is....

• Getting dressed to go out and you come down the stairs wearing your clothes but your underwear and bra are on the outside.
• Going to a restaurant and asking questions about what you do with a fork, knife, and spoon, only to have your family laugh because they think it's a joke...only it's not.
• Driving roads you have known for years but you take a wrong turn and end up in a different town; when you finally get home; you are literally trembling with fear.
• Never wanting your spouse to be out of your sight; so you follow them around like a puppy.
• Asking a question, and then asking the same question five minutes later then asking it again, and again, and again.
• Coming downstairs and finding a stranger in the house; you ask who this person is and why he is there...it turns out this person is your son.
• Speaking gentle words to a little kitten on the table that no one else seems to see.
• Wanting to go home after you have been on a trip, only to find out you are already home...but you don't believe it.
• Thinking you are going to work as your spouse packs your lunch, hands you your briefcase, and then drives you to daycare.
• Walking out the door in the middle of the night and getting lost; and having to have the Police come and find you.
• Loving to play with toys meant for a toddler even though you are a man who built his own home.
• Staying up late every night packing and repacking the same towels in the same drawer in your bedroom.
• Talking and talking except no one understands you; all they can hear is gibberish.
• Recalling the good old days as you sit and look at photographs...but you think the person sitting next to you is your mother... and not your wife.

Responding Positively to Alzheimer's Patients
By Howard Gruetzner, M Ed. Director of Regional Aging Services

1. The person asks the same questions over and over.

Common response: The person is not listening or trying to remember; she wants attention or is trying to annoy you; she should be able to control this.

Alzheimer's interpretation: The person is suffering memory loss, which in turn creates a strong sense of insecurity and uncertainty. She may be asking the same questions repeatedly because she seeks reassurance and security, or perhaps you earlier answers seemed vague or unclear. She may sense you are avoiding the answer, which could heighten her sense of insecurity.

2. The person denies her memory problems and makes excuses for mistakes, blames others, or seems unaware of the problem.

Common response: The person is not being honest; she should face the problem and accept responsibility for her own mistakes; she is getting old and senile.

Alzheimer's Interpretation: Denial of memory problems is a very common response to Alzheimer's. Initially, denial is a necessary defense. It protects the person from frightening changes that are difficult to accept. If she makes excuses or blames others, she may be desperately trying to explain the memory impairment without directly confronting the problem.

3. The person tells ridiculous stories or says unusual things.

Common response: She is lying or being mean; she is going crazy or getting senile.

Alzheimer's Interpretation: Such stories are easy to take personally, but they are rarely malicious. As memory and reasoning abilities continue to decline, larger gaps are left in the person's perception of reality. It is harder for her to explain or understand what is happening because her grasp of logic is deteriorating.

Ridiculous stories and obvious untruths may be attempts to fill in the blank, to explain what she cannot understand.

If the person believes her own stories, the things she says may cause real agitation, anger, and fearfulness. If her stories place blame on others, she may be trying to defend her self-respect and integrity.

Some of the unusual things a person says may also represent difficulties in speech. Finding words to explain things or even name things correctly becomes difficult as the disease develops. The person may be able to manage only fragmentary ideas or statements.

4. The person's abilities fluctuate from day to day or hour to hour; she remembers some things but not others.

Common response:She remembers what she wants to; she is not trying to remember; she must be getting old and senile.

Alzheimer's Interpretation: It is normal for the memory of all Alzheimer's patients to fluctuate in this fashion. It is a mistake to believe that improved memory on a given day means the condition is improving, however. Material that is unpleasant or threatening may be more easily forgotten.

These are excerpted from a wonderful website I have visited. I will include it in the Links section.

In Passing: Those We Must Remember

From InPainToo

My friends,

It is with great solemness in my heart that I must tell you my Father passed away last nite at the nursing home. I am very grateful to God to have finally sent the Angel to take my Dad to his new home. I was with him...by his side....until he took his last breath. I got to be there all alone with him. My sibs had left at midnite to go to sleep at their hotel (everyone was gathering for the "death watch") and told me to give a call IF anything happens. I am so grateful for that time alone with Dad.....and to BE THERE when he expired was a truly wonderful experience I will never forget. Send my love to all the group for me. The funeral is tomorrow....so I doubt I'll be on-line for the group. I WILL be back.

Joan Rambo

Happenings

Well folks, the deadline is tomorrow, Oct. 31. If you have an interest in attending the "Gathering of Friends" in Nashville, TN next October you MUST send an Email to LIZA513 and Russell363. You are not committed to attend at this time, this is just get information and to give the committee an idea of how many may attend.

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. Thanks for your cooperation.

Links

As I said, the articles above were from a website. It is a beautiful website but be prepared with tissues.

Alzheimer's Outreach

Wow Karen this is a great site and should be mandatory reading for people dealing with all the behavior problems that alzheimer's patient's exhibit.

Managing Behavior Problems

From BHostAC

E-mail Box

From Datel123
re: Issue 17

I especially loved this issue of the ribbon. If you think it would help anyone else I could tell you of my own personal experience of elder law and getting on Medicaid. Of course this wouldn't apply in every state but it is what the law in Texas is and I think the Spousal Impoverishment Law would apply all across the US It had to be passed through Congress. I could also reintegrate the importance of decisions being made while your loved one is still alert enough to know what they are signing. I would say the most important thing to do is find a good attorney in Elder Law. There are probably a lot of things of that nature I could help with. Another thing with AZ. Patients its important to have them placed early on in a nursing home if you are going that way any time in the future. The reason for this is that it gives them a chance to make friends, interact with the other patients, learn the staff and in general get in that comfort zone. I have seen so many wait too long and that person is thrown in the middle of someplace they don't know as familiar and its just too traumatic for them. For so long I had this tremendous burden of guilt because family and friends tend to judge you and your decisions. Heaven forbid that you ask anything of them, but boy are they quick to criticize the things you do. I couldn't handle a 6' man who weighed 220 lb. and had an artificial limb. He got to where he would swat me out of his way as if I were no more than a fly. Don't ever think that putting them in a nursing home will make it so much easier for you if you are the only caregiver. He could still get to the phone and call, sometimes 30 times a day. I could go on and on. It never ends. You are on call twenty-four-seven. There is no rest. The head of our AZ chapter told me earlier this week I had to stop going down there so much. Its about fifteen miles from here. The wonderful psychologist Katy told me the same thing. I have been there once since then, This was Tue. And I plan to go tonight. When I tell him something I have to keep my word and I don't think I will ever lose the guilt. Its just there and I can't seem to be able to let go. God knows I've tried but when you are absolutely the only thing he has if you are any kind of person you aren't going to walk away and stay for any long period.

Thanks again for the wonderful newsletter.

Dean

From KFieseler

Although I don't have a family member with Alzheimers, I am the caregiver to both of my parents in my home. They both have numerous health problems that are potentially life-threatening. Theyboth have living wills and medical directives naming me as the responsible party. I am having a hard time trying to figure out exactly what we need at home in the event that I find them unresponsive. They both have DNR wishes. I have been told that the living wills would not apply here at the house if paramedics were to arrive. Can you help me with info? Thanks. As I said, my parents are not Alz. patients, but I enjoy your newslettter as it applys to numerous aspects of caregiving.

Kary

From JayaeP

thank you for again sending me the ribbon. this months article was especially helpful for me, as my fathers dementia is caused by Parkinsons diseasse...

its good to know there are other caring people out there.

thank you
Jinny

From MM Sunbury

I was briefly in the chat room this evening (10-6-98) hoping to encounter someone who might be in a similar circumstance as I find myself now. You were kind enough to "speak" to me. I have been in contact with the Alzheimer's Assoc. in Chicago, and also with their nearest chapter from where I live. I have contacted people with the National Down's Syndrome group. I am receiving information from the nearest Alz. group, and some is also being sent to me from the Assoc. in Chicago. For several years I have been reading some of the boards in AOL about people with disabilities, and Down's people in particular. My daughter is now 30, and there is strong evidence she has Alz. Dementia. I have only been able to talk with one other parent who seems to be in my situation.
I have been hoping I would be able to draw more support with parents like myself (I am a widow) so that we could compare notes on the circumstances of our Down's children and just what they are going through. I noted when I entered the Chat room this evening and asked the question about Developmentally Disabled individuals and Alz. one of the people said it was probably pretty much like normal people. They couldn't be more wrong! Many of our "children" are not verbal, and it is very difficult getting any kind of assessment from the medical community.

The Down's Syndrome groups are trying to change this view, and are trying to make strides to help these individuals. It has been known for many years now that the Down's person share a very vital common gene with Alzheimer's people. Assessing is very important, but so hard when the person you are assessing can't give you any background of themselves, what they are feeling, etc. As a parent I am having difficulty seeing what is happening to my daughter, who is on healthy doses of Prozac, and recently started on Zpresa. Just how confused my daughter must feel is a very difficult for me to face. Her life has been filled with surgeries, a critical eyesight problem, hypothyroidism, and many other associated problems.

We live in a very small rural community, where I am at least 65 miles from the nearest Alz. Chapter. Since I have had severe retina problems I am not able to attend any of their meetings as they are held in the evenings and I cannot drive at night because of my vision.

I have put my daughter through all kinds of tests to make sure the behavior that is becoming very evident in the past year is not caused from some other medical problem. One of our most recent visits was to a Neurologist in May, who doubled her Prozac dosage (which had been started by our family physician in February this year). Her Zpresa was started on a recent visit to a Psychologist.

Fortunately, my daughter is living in a church run home for the handicapped which was built with their needs in mind. They are extremely caring people, and the community we live in is a very caring one also. For years it seems that our Down's individuals were not assessed as the normal population was when their behavior started to change, sometimes very drastically. Forgive my rambling e-mail and thanks for letting me "sound off" a little about my daughter. If she is actually going through this crisis I just want to be aware of hazards for whatever future she might have. I live very near her so I can help keep an eye on her progress.

Thank you again. If you know of anyone in the Alz. group in AOL with the same problem as I have, please let me know.

MMSunbury

From COWBARN
re: Issue 18

Just wanted to let you know that I'm still out here, even tho I haven't been to any chats lately. It seems I'm always behind, either trying to get to a chat or reading "The Ribbon". I just caught up on Issue 17 & 18 tonite and really feel for everybody but especially those dealing with situations where their hands are tied. The one that sticks in my mind is "the sister moving the mother closer to her so she wouldn't be inconvenienced" - geez, she's 500 miles away yet. Now, she's not close for anybody to visit her. This sister doesn't care about her Mom, just the "power" that is attached to her. My aunt resides in a NH six miles from me, I could have moved her to one only 3 miles away, but I didn't care for it - reminded me too much of a NH. My mother (her sister) passed away 3 yrs ago last month (cancer) and I moved back home to take care of my Dad (emphysema), he died 2 yrs ago in June. Did I mention that I'm an only child and my aunt doesn't have any children? During the time of my mother's sickness, I'd moved my aunt from her home to a retirement home via the hospital & a 2 1/2 wk stay at a "very bad, gives me the chills" nursing home. This was my first insight to the kind of NH that were out there. She was at the retirement home for 1 year before moving to the NH. I wish there were more family to visit her as she is able to carry on short conversations, but her brother & many nieces/nephews all live out of state. I am still grieving for my parents, I don't know if I'll ever be "right" again. My poor dear hubby doesn't know quite how to handle it when I break down. I've rambled on enough, got to go dry my eyes now.

May God bless all of you.
Janice

From GreenEys6

I want to thank you so much for the newsletter. My father is 63 years old. He has been diagnosed with Dementia. He has been exhibiting symptoms for about 4 years. My mother died at the age of 59 in 1995. Since that time he has steadily gone downhill. He still lives alone, but we have his meals brought in at lunchtime and one of us children go over to sit with him every evening. We have to take his dinner, turn down his bed, get his clothes ready for the next day. He knows who all of us are, but is so forgetful about everything else. He can't even remember to turn the water off after getting a drink of water. He has starting using foul language a lot. He never did that before. He seems to also be showing signs of aggression. I have a young 5 year old niece who is now afraid to go and see him because of that. He has never shown that in front of me, but for some reason he "behaves" better for me. It could be that I am the oldest and I look so much like our mother did I could pass for her twin. I fear it won't be very long before we are going to have to think about putting him into a home. I fear that when we do that, he will completely give up. There are 5 of us children ranging in ages from 44 to 38. We all have full time jobs that none of us are able to give up at this point in our lives. We don't really have the option of moving him in with any of us because of that. I personally have another 8 years to work before I can retire. But I don't think he can last that long before going into a home. Already though it's starting to take a toll on us.

Reading this newletter sure gives me some tips and pointers on what to look for and what to expect. Keep up the good work. I look forward to each and every issue. I put the weblink in my favorite places for future reference.

From Currby4

Allow your care needer to do the things they do at their pace. Allow them to walk slowly without rushing, to eat and dress at the speed they are capable. Allow time in your schedule to make this happen. Constant rushing make life frustrating for you and for them because neither of you will ever be fast enough. And when we are rushing are the times that preventable accidents happen. Find that peaceful spot inside of yourself and allow it to help you find the calm you need to.

i needed to hear this!!!!!! sometimes i think my mom is being "slow" on purpose but then realize it is because she must be afraid. every trip to the bathroom is "new" to her. thank you for this. laura

Thanks for another issue of The Ribbon. As always, I cried but read every word. It is amazing when I can read about what other people are going through and relate so much of it to my situation with my mother.

I was interested in the article on dealing with the financial end of being a caregiver. The problems I face financially are a bit different. Mom has enough money and income to live on for a while, and as of 6 months ago I voluntarily became responsible for taking care of her finances.

However, her money is limited. If her money runs out, we will have many more problems than we already have. The stress of making all of the best decisions, and of making sure all of her bills are paid (she lives in her own apartment with a live-in aide), and that all of her needs are met, is enormous. Add to that the stresses in my life with a full-time job, a handicapped husband, and the responsibility of my own finances, and I am overwhelmed.

I would love to see an article that addresses some of these concerns.

I'm glad you are recovered from your illness, Karen. You and the others are doing an excellent job and I thank you from the bottom of my heart.

From CNORRNFA

I have been reading The Ribbon fairly recently and find it very interresting and supportive as my 86 yr. old mother has Altziemers. This most recent issue is one that I wish I had read 2 years ago, before I Became the caregiver for my mom. I did exactly what you have advised people NOT to do. I sold my home, gave up my job,moved 150 miles back to may parents home and took over caring for my mother.The worse thing that I did was to drag my family here with me.

I have a sister who lives nearby and she tried to do this, but said she couldn't manage it. I thought that I was some kind savior and decided that I could. Well, needlessto say I'm in over my head and now my sister has the freedom and I feel as if I'm locked into a situation from which I shall never return.
My marriage is suffering, we are financially hurting, and I can't seem to make my sister understand that I need help with my mom. I mean REAL help. Not a twenty min. visit and then she runs home, or a lunch date and then she leaves again. How can others be so blind especially when they actually had a short taste of this situation themselves.

So, if you are new to this Ribbon, listen to what others have to say for they know from where they're coming. I wish I had read all of this before I made the decisions I did. But, I didn't. So if anyone can help me please feel free. Thank you all so very much. Dianne

Remember to watch your mailbox Wednesday for The Ribbon, Special Issue.

Have a Safe and Happy Halloween!! Don't forget the candy is for the kids not us. Heehee

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)

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