The locked Spirit

I think that I have finally come to an explaination of the disease of Alzheimer's, It is a spirit that used to shine and be in the forefront, that is now locked in a body that after all these years is betraying it. The spirit is there and you can see flickers of it in the eyes when my mom saw her great grandchildren. One of my last memories of her was a day she was here for lunch and insisted on with much trouble and physical difficulty to get on the floor to be close to her great grand daughters, something that she in the past would have done in seconds took minutes to do. But as she was on the floor with them I saw her love and her desire to connect with them in her eyes and in her voice. But as fast as she was off the floor and back in the couch, so was that memory of what she had just expierenced gone in to some black hole, not sure if it will ever be recalled. My mom was a woman that could recall things in an instant, and tell you stories of family members in years gone by, and in the end she could not remember how many great grandchildren she has or those names.

Alzheimers... it is ok to laugh

I think the main thing that helps me on a day to day basis with my mom is a sence of humor. It is OK to laugh, it is OK to smile. When I take my mom out, It is like being in a theatre production, I never know who I am going to be cast as or what. But when she makes that decision for me, I do the best performance that I can do, I have been on vacations with her that I have never been on , places with her that I have never been. Answered the same question 15 different ways and it is ok. These memeories even though they might be distorted or in the wrong time period, is one of the few ways that my mom has to communicate with the outside world. My mom fights for words some times that used to come easy to her, and I have to finish her sentence. When she loses things, we have created a game called, "Can Amy think like her mother?", it helps her not feel so embaressed, and weather it is the right or wrong thing to do it is what I do with her. I know that there is going to be a day when my mom does not recognize me or remember any of the memories, so as long as I can, I will play any role I need to, to help her feel happy and secure.

Alzheimer Versus Technology

When you want to make a call you pick up your cordless phone, when you want to turn TV on your get the remote. There are all kind of things that we use to make our daily life convient and easy. UNLESS you have Alzheimer's , I think one of the most challenging things of this disease is how to keep my mom functioning in the modern world with out frustration.
If you are blind there is Braile, if you are deaf there is closed caption and special phones. But there is nothing out there to keep the mentally challenged in the modern world.
We had to take the cordless phones out of my mom's place and put regular "old fashioned" corded phones in, Have you tried to find a corded phone? Well we found them and that was big help in being able to keep her using the phone, because she remembers how to hang it up and it is simple and basic.
One of my moms favorite past times is the TV, but we had to limit her to the basic cable and no movie or music channels because.... that involves another remote that has to be used. She will call me up and tell me that her TV is broke on the average of 3-5 times a week, and some times she is angry because there is only spanish TV on, ( she has pushed the language button ,,, again). I have looked and looked for simple remotes, and have not found any that will work. So, what I did was take a picture of her remote with my phone and now I can tell her what buttons to push in what order to get the "broken" TV to do what she wants.
When she was in the earlier stages of the disease she had a cell phone, it was called Jitterbug, I think this is a great phone for any one that can not function with a normal phone, You talk to an operator and tell them who to call, by name or relation and they will call you and tell you to please hold for ( in my case) my mom. But as her disease has progressed she could no longer remember to charge it, so we discontinued the service.
I think the most frustrating part of this is that you are trying to help this person have the fullest life possible, and it is such an uphill battle, to keep them in touch mentally with the modern world.

A mom with Alzheimer's, The Beginning

So many of you have commented on my blog about my mom, that I decided to continue with it and tell you a little more of what we as a family have dealt with.


Mom did not just wake up one morning and have this, it was a slow progressive disease. The first time I noticed it was about 2006, my mom came to visit me for Christmas and I noticed that she was getting confused in my house, and would laugh it off and say, "I am always getting turned around." I said something to my step-father and he said that I was making a bigger deal out of it than necessary. A month later, my mom called me from Florida and she is laughing hysterically on the other end about strawberries in her cereal. After that we started the gammit of doctors and test, and trying to figure out where we were.

I will never forget the day the doctor told her she had Alzheimer's. My phone rang and it was my mom crying on the other end of the phone, and she said Amy, "They say I am losing my mind, what am I to do?" she was so scared, and the fear and the shaking in her voice, was that of a little child when they are very upset.

I found this question to be one that I could not answer. When some one gets a diagnoisis, there is usually a treatment, a way to fight, a way to feel like you are going to give the disease a run for its money. With Alzheimer's there is no way to fight back and that in its self is a very helpless feeling. Sure there are the memory drug medicines, but that is not something that will heal, or make it go away, it is just a way to slow down the disease.

I sat on the other end of the phone, in complete silence, my head swimming with emotions and questions and anger and sadness,and out of my mouth in a very calm voice I said to my mom, " Mommy it is ok, we will be in this together, and I will walk with you and then I will guide you." I got off the phone and sobbed, I was going to lose my mom.

Lose weight JUST exercise

Most of you that know me personally know that I am extremely over weight, but to some peoples shock and amazement I am not here by choice. Every thing that seems to go wrong with you, people say lose weight, and that will cure it. Do people think that I would not want to be skinny, and wear all the clothes that are popular, not have to go to the baggy section. Yes I know , the answer to losing weight is eating less and exercise. But in talking to some over weight people in the last few weeks, I have discovered something, I think there are a lot of over weight people out there that do not eat enough! My brother has chosen a new career path as a personal trainer and I am his pet project ( I don;t know how I feel about that ) and I had to write down what I ate and how much, and he told me. "Amy, you do not eat enough." WHAT! All my life I have been taught fat people over eat, and to now be told I need to eat, is mind boggling. So three meals a day, and let me tell you this is not easy for me, I find myself feeling guilty for eating, or for having a snack. A snack, fat people can not snack. I know my idea and perceptions are wrong, but believe it or not there are a lot of people out there that believe that. Then he said the nasty terrible word, exercise. I explained to him that a person as out of shape as I am , that is like saying , 1 tsp of Castor oil, you know it works but it tastes terrible. His answer was to just get out and do something, Ok, sounds easy, like what? Take a walk,anything. But for a person that has not done something like this on a daily basis ,and never had to exercise when they were younger to keep an ideal weight,this is more a chore than you think. Just exercise, to me comes with all the uncertainties that a new job would, lets face it , it is a major life change, and to start exercising hurts. Then you have to keep doing it, even though your muscles are aching, but wait that is a good ache because you know you are getting in shape. Is that like arthritis hurting is good because you know you are still alive? Well I am going to try this new concept of JUST EXERCISE, and see how it works, but I do not think I am going to do it with a smile on my face in the beginning.

A mom with Alzheimer's

I am sure most of you know or know some one that has a loved one that has Alzheimer's. My mom has it, or well they say she has it, the only way they can be 100% sure is to do an autopsy of the brain at death. That all being said, having some one with this disease teaches you to expect the unexpected, to know that plans are made to be changed, and that patience and undestanding friends are something that you need a whole lot of. My mom is in stage 5 to stage 6 of the disease, and she can remember people, but her short term memory is completely gone, she can take a pair of socks off and lose them in a matter of a minute. It is hard to watch some one that used to run several businesses, helped but my dad through school, got a 4.0 in college, not be able to turn the TV on or off, and be reduced to tears over it. I get on the average of 15 calls a day from her, and when she calls me she can not remember why she called, so I have to guess and help her get through the conversation. It is like there is a whole life locked in to the brain of this person, and it can not come out. She lives in an assisted living because I can not take care of her, she is on 15 medications a day and needs assistance to remember when it is time to eat. But if you were to meet her and talk to her, you would never know that this woman has this disease and that it is so progressed, she can carry on a conversation and talk to you and have a great time, but in 5 minutes, she will not remember talking to you at all. I know this disease is hard on the person that has it, but it is just as hard on the loved ones of that person. You look and see one person on the exterior, but the person they are on in the interior is gone, and they lose the sparkle in their eye and the smile on their face, So if you know of some one that has a loved one with this disease, give them an extra smile or hug and let them know you understand, believe me it goes a long way on the path that they are walking. Because the loved ones of a victim of alzheimer's are suffering a long slow loss that is hard to understand unless you have been there.

LIFE IN THE SLOW LANE

How many people are finding themselves in the new economy, unmarketable? I thought it was just me , being in real estate and heading in to the big 50, but I am thinking that it is more wide spread than I thought, This wave of unemployment and cut backs seems to be hitting all kinds of employment and all kinds of people with varying degrees. Why all of a sudden are people that have given a lot of time and effort and sometime over half of their working career just becoming disposable? The term job security , now means nothing. When I was growing up I was taught get a job, house, and then a savings, all of these things seem to be mute points in todays society. Jobs are just getting taken out from underneath people that have worked for years and years, housing are losing value and becoming more of a burden than an asset, and savings, how many of us have watched our savings/ retirement just go by the way side. So what do we do? Just say oh well? I feel that it is to late in my life to change careers, and I really do not want to go back to school. I want some one to stand up for the middle aged american, and say hey you can not do this to these people, but who will stand up for us? That is the question I have been asking myself for a long time. Being self employed I don;t have any one that comes up to me and says, hey clean out your desk, which is in a way harder, because, I have to keep myself motivated and feeling great. So if the government is bailing every one else out, why don;t they make the new retirement age for medicare and social security 50, and then all of us can be put out to pasture, with at least a little security and not left in the middle of the street with just our britches.