Satan entered our home with a silent, invisible, devastating, disease that has no explanation and no cure. It makes its presence known in so many different ways. It demands learning anew even several times in the same day over and over again. It is impossible to say, “I’ve got this figured out now and I won’t have so many problems with it anymore.” The following things I have learned and continue to learn every day.
1. I am learning that the tone of one’s voice when talking is as important or even more so, than what is said.
2. I am learning that a person with ALZ can look directly at an object within twelve inches of their eyes and not see it. Or see it in a different color, size, or shape. For instance, My Lady put on a pair of black shoes. Within five minutes I saw that she had changed into a pair of white shoes. I asked her why she changed to white shoes and she very firmly said, “These are black shoes!”
3. I am learning that the loneliness of the caregiver of a person with ALZ can be very hard to deal with.
4. I am learning that a reasonable conversation comes briefly and goes away quickly at times. We may be having a rational conversation and suddenly the response to something that is said is completely irrational. 5. I am learning that the need to control your temper and be kind is absolutely essential even if it is so very difficult to do so. When the afflicted person is unkind and loses his/her temper the caregiver must not respond in that way.
6. I am learning that someone who has never personally dealt with ALZ or lived with it 24 hours 7 seven days a week, is not qualified to give counsel or advice to the one who has. There may be helpful books or doctors who can help us deal with some of the emotions that ALZ brings to the caregiver but living with it 24/7 is a challenge that only the one involved can understand.
7. I have learned that others who have lived with ALZ 24/7 are the best counselors.
8. I am learning that the patient can see other people and hear their voices that are not there. These people often tell the ALZ patient to do things and say things that obviously are not true except to the patient. “They” have become a full-time resident of our house although they are not there.
9. I am reaffirming my belief that it is ok and even good to be able to cry. Cheeks bathed in tears are not signs of weakness and fear but avenues of relief from pain. I say, “Cry often whatever the need, to relieve pain or express joy and happiness, just go ahead and cry.
10. I am learning the importance of ignoring words and actions and after a few seconds move on to something else. Deflection is a good tool to use every day.
11. I am learning to be grateful for friends who ‘prop us up on the leaning side’. May God bless you everyone.
12. I am feeling the importance of prayer and it is yours that we seek today.
13. I have learned that the people that My Lady is with has a great bearing on how she feels even several hours later. My daughter and her husband recently went with us on a trip that was a little more than 48 hours long and we drove almost 1000 miles. The trip was very pleasant, and My Lady had no problems staying in a hotel 2 nights and all the travel. But there are other times when she has been with someone for a much shorter time and became very nervous and it took several hours for her to become comfortable again. Be careful and pleasant in your communication with an ALZ patient and don’t go over your problems with them lest they become overly concerned about your problems and their problems become worse.
14. I have learned the importance of allowing My Lady to do what she can do even if she makes a mess of something, and I have to do it over. I have been too impatient and wanted her to just sit down and let me fold the clothes, load the dishwasher, etc. like I wanted them done. Now, she helps with those things, and she feels like she is helping even if I have to slip around and do something over.
15. I have learned that it is really good for people to realize that she isn’t the ‘bubbling over with personality Barbara’ that she has always been and to realize that when she talks to them about chopping or picking cotton the day before, just get in the cotton patch for a moment with her and she will be happy.
16. I have learned that it is very easy to scare her and that this should not be done. If I respond to something from her or even on TV, my response by word or deed may scare her.
17. I have learned that both of us are going through a tough transition in our life. It is not of her doing and she must not be held accountable for it. It is the disease that very often speaks and acts and not My Lady.
18. I have learned that we can still laugh at all kinds of things. We remember in our past things that we laugh at and enjoy remembering. I try to make her laugh as much as possible because laughter may indeed be “The Best Medicine.” Even when we cry together, when the crying is over, we find reason to laugh at ourselves.
19. I have learned that some people seem to think that she is contagious, and they don’t need to be around us. We need company. We need fellowship. We don’t need to be ignored as though something is really wrong with us, even though something is wrong with us and your fellowship with us might be good medicine for both of us.
20. I have learned that TV can be very dangerous for her if it isn’t something along “Andy Griffith” lines. If you know of a good movie that we might watch, let us know and that would be good for both of us. The NEWS us definitely a “NO, NO”.
21. I have learned that what she eagerly ate for lunch yesterday is a horrible suggestion for lunch today. When I remind her how much she liked it, she tells me that it made her really, really sick and not to offer that again. Two days later she ate it just fine.
22. I have learned to include her in everything possible just as if there is nothing wrong. She doesn’t need to be made to believe that something is drastically wrong with her.
23. I have learned to be as loving and tender as I possibly can when she tells me that she knows what she has and where it is taking her. This is the hardest thing that I have to deal with because I want to tell her that she is wrong, but I know that she isn’t.
24. I have learned that Family is very, very important to my survival as a Caretaker and My Lady’s best interests as an ALZ patient. We simply cannot make it without our family. The third installment of 'Some things that I have learned from living with ALZ'
25. I have learned that ‘little things’ become ‘BIG’ things to an ALZ patient. And some very important things are not important at all to that patient.
26. I have learned that when the time comes, and is right, have some fun. Laugh and giggle about things especially things that the patient thinks are funny. Make these sessions last as long as possible.
27. I have learned to cherish those moments when she seems almost as normal as she has ever been. Make them as long as they can be before they are lost again. 28. I have learned that when she sees things and people that are not there, don’t argue about them just see those things and people in your own mind and go along. It will pass.
29. I have learned that there are things of the past that she seems to remember clearly and probably will forever. For instance, she was a part of a group of about 15 girls in school that have continued their friendship for all these years. She still talks to some of them on the phone. You would not believe how many times ‘the girls’ have told her to do things and say things that are just out of the blue sky. “The girls” are so very important to her and I hope that memory will last as long as she does.
30. I have learned and continue to learn that schedules, eating, sleeping, etc. are out the window. She may eat a wonderful lunch and two hours later ask when we are having lunch. She may wake up at 4 o’clock AM and think that she is late getting in the shower. ALZ requires some adjusting when it comes to schedules.
31. I have learned that when she is crying for no apparent reason, just stay quietly nearby and let her cry. Soon, she will be ok, but I have learned that the more that I talk and try to reason with her, the crying just goes on and on. After all, don’t we all want to just curl up and have a good cry occasionally?
32. I have learned that ALZ is the culprit not My Lady. She may do things that are totally out of character for her. It is NOT her! It is ALZ and she has no more control over it than I do. Want to place blame somewhere? Put it where it belongs, on ALZ and not the patient.
33. I have learned that I am not a real good beautician, hair stylist, or make-up artist but I sure do have a great looking Lady to practice on.
34. I have learned that sleep is a very real friend especially if you have good dreams. Sometimes the confusion begins as soon as our feet hit the floor and continues until we get in the bed that night. It is an awful intrusion into what could have been a very good day.
35. I have learned that it is OK to be angry, but that anger must be properly directed. I really get angry sometimes, not at her but at that monster that lives in her head and is constantly eating away at her brain and cannot be stopped. I hate that monster because of what it is robbing me of.
36. I have learned that I have not appreciated what My Lady has done for 63 years and 61 days in our home. Now that I am doing so much of what she has done I cannot imagine why I was so blind to her efforts. Only God knows how hard she worked but made it look easy for us to have a home like we have enjoyed.
37. I have learned that when you think that you cannot take another step, Jesus will give you another step and one step at a time is all that we can take to continue the journey.
38. I have learned that most of the care givers problems stem from exhaustion. Therefore, some provision for rest must be made or the task becomes much more difficult.
39. I have learned over and over again that God is by far the most important part of the triangle involving My Lady the AlZ patient, Me the Care Giver, and God. Time must be made for reading, study, and prayer. Without that, the battle will be lost for both parties.
40. I have learned that My Lady often thinks that I am angry just by the response to something that she did that surprised and sometimes shocks me. So, careful attention needs to be given to every response.
41. I have learned over and over that my mouth needs to be kept shut sometimes and after so long of having it open nearly all the time whether it needed to be or not, that is quite a challenge.
42. I have learned to be very careful in teasing her because what has been teasing in the past and was acceptable, may not be considered teasing at all anymore.
43. I have learned that the caregiver must be extra alert when it comes medicine taking time. The correct medicine, the correct dosage, the correct times, and making sure that the medicine is taken and not poured out all must be carefully attended to. Don’t make a mess out of the medicine taking time. 44. I have learned that it is very important to be alert all the time even during the night because you never know when she will get into something that she shouldn’t or even go somewhere outside. It happens like a quick trigger or the blinking of the eye. She may start to use deodorant for tooth paste and you see it out of the corner of your eye and jump to stop it. Or she may wander off to Marty and Lisa’s next door but doesn’t know which house they are in. So, being alert at all times is important.
45. I have learned to dislike it when she does something that in other circumstances might be considered funny, it isn’t funny to her or to me and I don’t want her to be laughed at by me or anyone else. ALZ isn’t funny.
46. I have learned that it is very important that she eat properly. She has never been a big eater. She can eat a good breakfast and not be hungry until the next big breakfast. However, now she may want to eat five times a day with a few snacks in between and the doctor says, “That’s good, let her eat.” It may be good for the doctor, but he doesn’t have to have the food ready when she gets hungry.
47. I have learned to do everything that I can to avoid thinking about tomorrow. If tomorrow comes we will deal with it and if tomorrow doesn’t come it will be wonderful to be at rest or at home with God.
48. I have learned to grab hold of the peace that comes from knowing that the Godhead, God, Jesus, and the Holy Spirit are always present with us. We talk almost every night about God, Jesus, and the Holy Spirit being in our bedroom with us. Yes, we know that Satan is there as well, but he can do nothing that the other three cannot handle.
49. I have learned that there is great value in pictures to her. My Lady’s younger sister, Lin Rahrle has come to visit a couple of times lately and spent most of her time hanging pictures for us. My lady loves those pictures and goes over and over them every day looking at them as though it was the first time that she has seen them. The same thing is true with greeting cards. She reads them over and over again as though she has never seen them before. Say, you might invest 59 cents postage and a 50-cent card at Dollar Tree and bring some light to My Lady.
50. I have learned that it is futile to try to explain something to an ALZ patient. When they do something wrong it is useless to try to explain that it’s wrong because to them it is not wrong. The argument that such efforts prove to be detrimental to both the caregiver and the patient. 51. I have learned to try not to be surprised with far- fetched ideas that an ALZ patient may have. It may be from Mars but so be it. Just move with it back to Mars where it came from and love your loved one.
52. I have learned that adjusting and adjusting and adjusting again is the rule of living with ALZ. I believe that it will continue as long as the disease remains. Refusing to adjust leads to chaos and confusion for the patient as well as the caregiver. 53. I have learned that there are many things that money will not buy and a cure for ALZ at this time is one of them. If I owned Fort Knox, I would find there is no cure for ALZ there. And I don’t own Fort Knox.
54. I have learned that ALZ does not leave two people in a fifty/fifty situation. There is no giving and taking. The caregiver does the giving and hopes that the patient will do the getting.
55. I have learned that sounds in the night are of concern to her. Every house that I have ever known has had some squeak or pop during the night and they were never a concern to her before. Now the slightest sound tells her that someone is in the house or trying to get in the house. The biggest culprit is the icemaker in the refrigerator. It grunts and groans like some drunk and really upsets her until I explain what it is.
56. I have learned that an ALZ patient should be treated with the greatest respect. Who they are with ALZ and who they were before are two entirely different people? But the one that was is still in the one that is somewhere and deserves the same respect if not greater than before.
57. I have learned that when an ALZ patient is awake, they seldom stop moving. There is something that they feel needs to be changed in some way, hidden away for some reason, or completely disposed of. So, don’t be surprised at what you find in the refrigerator, bathroom, shower, or commode that should not be there.
58. I have learned that My Lady ALZ patient should not have her personal needs neglected simply because she is an ALZ patient. So, we get up, get her in the shower, I lay her clothes out as I have done for years, we do her hair and makeup, and get her ready for the day. I want her to look as beautiful as I can for as long as we can. She deserves it even if I must hire someone to help us get it done.
59. I have learned that I thought that I had been tired before but now I know that I had only touched the hem of the garment. And I look at her and know that inside she is far more tired than me because she knows what is happening.
60. I have learned and continue to learn that a one-way conversation is not very enjoyable. I make a comment and the response often is completely off the wall not even close to the remark that I made. That happens so often, and it is so frustrating. What do we do in that situation? Drop your head a bit to keep from showing your frustration and disappointment and reach over and take her hand and say, “I love you” and move on in a little bit with something that she may be familiar with. Then, when you get the chance, cry your heart out and feel better.
61. I have learned and continue to learn that I need to learn as much as I can about life with ALZ as we move along. I must not overlook anything that might be helpful down the road. Be aware!
62. I have learned that when I learn something that I want to share with you, I need to write it down right then or a short time later what I learned didn’t stay learned very long.
63. I have learned that it is hard to know which is worse….the constant talking and going from one to another thing that makes no sense at all, and I know nothing about, or the deafening silence when she doesn’t talk at all.
64. I have learned to lean on people like Dale Smith and others who have been on this journey far longer than we have and can offer much help to all who struggle with ALZ. Playing it alone can be disastrous.
65. I have learned that as difficult as it is for me to admit it, I need help. When I said, “I do for better or worse, for richer or for poorer”, I meant it and I was determined to take care of her in every situation in life. Now, there is a load that I cannot carry without God, family, and friends to help me. I sat in the Doctor’s office recently and could not believe that I was telling him that I needed him even though he has been our family doctor for 46 years. I have often preached and written that “We need each other” and I know it now better than I did then.
66. I have learned that some people are not very conscious of what they say to and in front of an ALZ patient. They understand much more of what we say than we think that they do, and the results are often very painful to both patient and caregiver who is left to try to explain that no hurt was intended.
67. I have learned, and this may be a bit blunt…But some who were friends before this disease came, are not very friendly and evidently were not the friends that we thought they were. Blunt, but painfully true.
68. I have learned the inestimable value of every minute that I get to spend with her. I know that sometimes it is very, very difficult to spend hours on end with her and that my children and many of you tell me that I must get away and take care of myself. But I know that every minute that I am away from her is a minute that I can never regain. I know that when I am away from her in body, I am with her in mind, so it is not possible to really get away. So, I must get every minute with her that I can and still maintain my own mental and physical state. So, I say to other loved ones, “Don’t let too many minutes pass without being with that loved one because the number of minutes is passing by rapidly.”
69. I have learned that it is OK to be scared. I am not John Wayne or Clint Eastwood. Sometimes I find myself just scared half to death, but God picks me up and helps me to go again.
70.I have learned that time means nothing to an ALZ patient because they cannot tell time and when I ask her for five minutes to get something done, she comes two minutes later and wants to help me. I must move along in life with a fraction of the time that I did have to get my work done. She doesn’t mean to, but she demands time that I need for myself.
71. I have learned to accept that my expectations may not become reality. I keep telling myself that when we get up in the morning all of this will have been taken away and we will return to normal, but I know that isn’t going to happen unless God intervenes.
72. I have learned that when she needs to cry, I need to just hold her and let her cry. And that usually results in both of us crying and that’s when the only place to go is to God. That is when God sees us and hears us with our cheeks bathed in tears. Normally the relief that we feel when the crying is over is almost worth it. A great load has been lifted off us. • I have learned that today I can count my blessings because…. • Today I still have her, and she still knows me, and we can still communicate well…. I’ll take it. • Today I still have her, and she has a good appetite and eats really well…. I’ll take it. • Today I still have her, and her medications still seem to work well…. I’ll take it. • Today I still have her, and she is as beautiful as ever…. I’ll take it. • Today I still have her and so many, many, people still love her dearly…. I’ll take it. • Today I still have her and when I forget the words to a song, she reminds me…. I’ll take it. • Today I still have her, and she can still take care of almost all of her personal needs…I’ll take it. • Today I still have her, and she still loves her lipstick….I’ll take it. • Today I still have her, and she still loves to assemble with the church and listen to me preach…. I’ll take it. • Today I still have her, and she is still a great example to our children, grandchildren, great-grandchildren, and thousands of friends…. I’ll take it. • Today I still have her, and we will lay down to take a nap and five minutes later she will say, “I had a good nap.” I will say, “You scoundrel, you didn’t even take a nap” and …I’ll take it. • Today I still have her, and she will ask, “Is today church day?” ten times and I will tell her “No.” and ….I’ll take it. • Today I still have her, and she has no doctor appointment and is in good physical health and….I’ll take it. • Today I still have her, and she will wake me up in the middle of the night saying, “Somebody’s in this house” and I will catch her and say, “There’s no one here but you and me” and she’ll be happy with it and….I’ll take it. • Today I still have her, and she will get me so frustrated and yes angry, but I will grit my teeth and get over it and….I’ll take it. • Today I still have her and tomorrow…wait there is no tomorrow! Today is what God has blessed us with and we will not think about tomorrow until and if tomorrow comes.
73. I have learned ALZ is winning the battle over us mentally and physically, but its victory over us in those areas will mean victory FOR us spiritually and eternally.
74. I have learned that one of the most difficult things to do in an ALZ patient is to get them to sit down. My Lady just walks and walks looking for something that she never finds until I can sit down with her.
75. I have learned that the caregiver needs a good dose of extra education in the Fruit of the Spirit: “Love, joy, peace, longsuffering, gentleness, goodness, faith, meekness and temperance”. These qualities all in abundance are needed with an ALZ patient.
76. I have learned that what I learn today must be learned in a different way tomorrow because life has changed since yesterday.
77. I have learned that things come into her mind without any foundation for them at all. For instance, this morning she woke up feeling fine but in just minutes she became very upset because she realized that today was the day that she would die. She even saw herself in her casket.
78. I have learned that every day she becomes more conscious of what is happening to her, and it is very painful to her. The days of not knowing what the problem is, is over. One of her closest and dearest friends of more than 56 years passed away after a long battle with this disease. We would go and see her and when we left, she would cry and say, “I don’t want to be like Peggy.” That is exactly where she is headed unless the Lord would be merciful to her and change that destiny.
79. I have learned that sometimes the difference between being angry at the disease and being angry at her is very small. I must work diligently every day to remember, “It isn’t her it is ALZ.” I emphasize to her over and over again, “This isn’t you; this isn’t you, it is your illness.”
80. I have learned that it is very difficult to explain things to her. She said, “I have to live a different life now.” I asked what she meant, and she told me exactly that because of ALZ she cannot live like me, our family, and others. She was correct and what do I say? She told me, “It’s over.” I again asked what she meant, and she told me that her life is over and today she will die. How do you explain something to somebody who already knows what the explanation is…that we are all going to die but we do not know when? She knows that but in her mind for that moment, it is today.
81. I have learned that it is very hard to get her to eat when eating is the last thing that she wants to do. Do you remember how difficult it was to get your child to eat? To get a sick adult to eat against his or her will is far more challenging. 82. I have learned that one of the good stress relievers is to get out of the house and take a walk if possible or get in the car and take a drive. A stop at Andy’s frozen yogurt place is a good idea or some other favorite place for a refreshment time. Four walls can get closed in pretty quick at times.
83. I have learned that smiles can turn to tears in a very, very short time and it is challenging for the care giver to make that change. The care givers response can be one of frustration or even anger in such cases.
84. I have learned that the mental and physical health of the caregiver is of supreme importance to continue to provide care for the ALZ patient. It is a tough road to travel but it can be done if proper care is given to both the caregiver and patient.
85. I have learned that being a caregiver for an ALZ patient is not a one-person task. Remember the saying, “It takes a village”? That is certainly the case in providing proper care for a loved one in this condition.
86. I have learned that holidays, especially ones like Thanksgiving and Christmas are quite painful for both the patient and caregiver. My patient is still conscious of things enough to know what holiday it is but it is not the enjoyable time that it once was. Both of us hear of others having a great time and we are very limited in what we can do, so we try to enjoy as much as we can under the circumstances.
87. I have learned that I would love to have one more day with My Lady of five years ago or even 63 years and 135 days ago on our wedding day. She was so beautiful and so much a Lady and she continues to be that same way today. Oh, for one day with her before ALZ came.
88. I have learned that ALZ is a devil, eating away at the brain one small bit at a time until a person is totally helpless.
89. I have learned that it is difficult to maintain a spirit of hope when the patient is slipping away and there is no stopping it. There must be always a heart full of prayer
90. I have learned that I need to go back and read again some of the things that I have already written and see that I have fallen far short of some of those things and that I need to listen to myself more often.
91. I have learned that so many, many, people have suffered a greater loss than we have and that prompts me to count my blessings and move on.
92. I have learned that when patience is weak and anger is strong and in a conflict with an ALZ patient and a caregiver, both lose, and nobody wins. It is up to the caregiver to see that those times are as infrequent as possible, and resolution reached quickly.
93. I have learned that those moments when everything seems normal must be tucked away and the memory cherished because those moments will melt away quickly.
94. I have learned the folly of trying to ‘explain’ something to an ALZ patient who will remember that explanation for two or three minutes and that which needed explaining will return.
95. I have learned that it would be a lie for me to say that I have never been so angry that I could hardly function and sought escape for a few moments. Frustration mounts as things continue until my teeth are clenched that my entire head hurts. Those are times when crying out to God is the only recourse that one seems to have. 96. I have learned that it is alright to cry out, “WHY?” In fact, I doubt that anyone has gone through life with ALZ without crying out “WHY?” Sometimes the only answer is stark silence until we can grasp our focus and bring it under control until we let God answer. And answer He will if we will listen closely.
97. I have learned that long ago times of pain and sorrow which she thought were long ago forgotten, have reared their ugly heads now and are causing the same pain and sorrow as long ago. That is why it is important to have a good doctor who works with ALZ patients to help them through these times. Oh, how I wish that I could remove these things forever from her memory, but I doubt that it can ever be done. We have a very fine geriatric/psychiatrist who has helped, and we highly recommend this treatment.
98. I have learned that unexplainable spells of anger can cause an ALZ patient to be an almost unrecognizable person that we have known for years. Offering to pray is one very good way to handle such a time but if that is rejected, leaving the scene as quickly as possible without damage is the best way to handle such a problem.
99. I have learned and re-learn daily to enjoy the sweet moments as often as they come and that is really often. This morning she said that she was ready to get up, shower and get dressed. I told her that she would have to get out of bed to do that. “Oh,” she said and looked at me as though she was asking, “Why do I have to get out of bed to do that?” I love those times when we can laugh and joke and have fun.
100. I have learned that it is really important to enjoy life to the fullest when you can because that blessing may be changed drastically in a moment. No one intends to lose their ability to function fully and stay well but it can happen in the twinkling of an eye, and you will be challenged in ways that you had never even considered before.
101. I have learned that some people are not as sensitive as they should be when laughing at something that is not normal. The ALZ patient will wonder what they have done because to them it is normal to say or do the things that they say and do. All people should be doubly sensitive about laughing the presence of an ALZ patient.
102. I have learned that stubbornness and anger accompany ALZ. It is much better to show the patient how and why something should be done than to demand of them something that they have never liked and now it is even more distasteful to them. Showing rather than just telling is a much better plan.
103. I have learned that it is advisable to talk to an ALZ patient about their condition occasionally. For instance, tonight, Jan. 2, 2022, I got up on her side of the bed and told her, “I know that it isn’t you when you become angry and stubborn, it is the medical problem that we are dealing with. I know that at times you do or say things that you didn’t do before. So, we are going to live with it, and it is going to be OK with me and the kids.” It is amazing how much good that seemed to do for her. (I do not call it ALZ to her because she despises the word ALZ.)
104. I have learned that the changes that take place between the time that we close our eyes at night and open them in the morning are many and at times shocking. That is how quickly the mental abilities are digressing. 105. I have learned that the thought of just giving up sometimes looms large in the mind of a caregiver. It passes quickly and we press on with trust in God and the assistance of family and friends.
106. I have learned to be appreciative of even the very small things that others do to give me an opportunity to have a little time to do my work or just walk up and down the street on a bright sunny day. Don’t neglect to be aware that you may do a world of good by giving a few minutes of your time to assist someone.
107. I have learned that one of the most difficult things to deal with in an ALZ Patient is stubbornness. It is very challenging to get one to change their mind about a matter even if it is very important that they do so. It takes time and a gentle approach to turn a stubborn streak around.
108. I have learned that learning never stops with ALZ disease. Every day something new arises and a caregiver must learn something new. 109. I have learned that the activating of the brain of the ALZ patient is like the waves of the sea. When one comes in very high, shining in the sun, her mind is almost normal and for a brief time we have a conversation like we always did. But the beautiful wave crashes and her mind with it and it is back to not being to converse very well at all. But I love those beautiful high waves that bristle in the sun.
110. I have learned that precious moments come, and I love to store them away. She stood directly in front of a picture of her mother hanging on our wall. Her Mom has been gone for 69 years but My Lady still speaks of her nearly every day. As she stood there suddenly, she put her hand up to her mouth and kissed it and then reached out and planted that kiss on her mother’s face. A more precious moment I haven’t seen in a long, long time.
111. I have learned of the agony that comes with looking either straight in the eye and my seeing a beautiful, stunning, bright Lady who is pleading with me to let her come out and join me in the life that we have had for so long and I am frozen in the place where I can do nothing but love her and hold her and pray together.
112. I have learned that there needs to be, and I do not know where it is yet, a definitive line between not knowing something or a fit of anger and just plain meanness. I hate to make this statement but in the case of burst of anger one must learn to walk away, and it may not be a short walk but one that will give the caregiver time to regain composure and settle down while the patient does too.
113. I have learned that trying to take the next step is very, very discouraging when you hardly know how to handle the present step. It is best to deal with the present moment and stop until the next moment comes.
114. I have learned that a caregiver who is not a family member may sometimes do a more effective job than a family member.
115. I have learned that the guilt that is felt when a wrong decision had been made can be the greatest pain that one can feel. It is very wise to consult others when a major decision is being considered. 116. I have learned the heartache that comes from waking our son or daughter in the wee hours of the night is very heavy.
117. I have learned that she has almost lost the desire for affection and even to some degree a touch and or an attempt to hold her provokes feelings of fear and what she perceives to be aggression on my part. She becomes afraid quickly. I miss so much the warmth and feelings of love and holding her in my arms.
118. I have learned to be open to dealing with things that I never considered being a part of my life. But I strive daily to be able to do those things without complaint for My Lady’s sake. After all I may not have recognized it earlier, but how many times has she dealt with similar things for me?
119. I have learned that I just thought that I loved her in the past I guess, because it seems that another whole batch of love has come from somewhere and I love her more each passing day. Not everything is easy and pleasant but with love everything is possible.
120. I have learned the awfulness of not having a reasonable conversation and when making a statement of some kind the response is completely off the planet. Sometimes just a bit of conversation is genuinely needed and is missed greatly.
121. I have learned that soon we will have to forego eating out because it is very hard to please her and very often the table gets quite messy. We have enjoyed that luxury for all of our married life although for a first few years it was simply McDonalds but we thought that it was the greatest thing on the planet.
122. I have learned the greatness of the pain of watching the dearest person on earth not only dying mentally but now physically as well. Her condition physically seemed to have hit quickly and is being effective quickly.
123. I have learned that it is very important to know when it is time to get help. The health of both patient and caregiver hangs in the balance and to be too late in getting help is not good for anyone involved.
124. I have learned that it is very important to do the best that you can to find time for prayer and bible study. It is really hard to do that because the patient is usually right on your heels wanting to help what you may be doing or needing you to help with something that they need or think that they need your help for. Time is such a vital thing so when it is available, grab it and use it for a good purpose. (I was just now involved in getting some very urgent work done and she came in twice to talk to me about her sister who has been dead for several years but was telling me that we needed to help her).
125. I have learned that chewing gum that she loves is the best way that I have found to keep her quiet when I am doing something that needs to be done.
126. I have learned that it is impossible to know when she is really hurting and when she just thinks that she is hurting. I want her to be as comfortable as possible but sometimes she simply hurts only in her mind and we try to distract her and she finds that she really isn’t hurting at all.
127. I have learned that the best remedy for a temper tantrum or a time of intense confusion is a tight and honest hug for a couple of minutes. In fact, isn’t that the remedy that most of us need to share?
128. I have learned that the most painful time is when she has that flash of complete awareness of what is happening and cries and says, “I don’t want to go. I don’t want to leave you and the kids.” Oh, the pain in my heart because I don’t want her to go either but there is nothing to be done.
129. I have learned that the time that a caregiver spends with an ALZ patient without any communication from others should not be a very long time. It is really hard to go for hours, not to mention days, without anyone dropping by for just a visit and give the caregiver the opportunity to visit with someone who is aware of what is being said and is able to have a normal conversation. You may consider this to be bold but it is what I have personally learned. 5/10 minute visits can make a huge difference in a 24 hour day.
130. I have learned that is extremely hard to see her really struggle to do something that she has done all her life and not be able to do it. She will say, “Would you like for me to fix you something to eat?” I know that she can’t and it breaks my heart to say, “No, we’ll get something later.” She struggles to fold clothes and most of the time they have to be done over but I let her do it in the way that she wants to do it.
131. I have learned that nothing will replace calmness even though it is really challenging at times. It is necessary to be calm and the calmness will be repaid in the same way after a few minutes.
132. I have learned to be very grateful that she still knows with an occasional exception and then only for a flash of time and she laughs and recognizes me quickly.
133. I have learned that my journey is one of its own and like no other. Others may have had similar circumstances but none have had exactly the same circumstances as mine.
134. I have learned that when my children encourage me to go to the Holiday Inn express for a night and let them take care of My Lady, my body may be at the Holiday Inn express but my mind is right where My Lady is and I cannot sleep for wondering about her.
135. I have learned that it is highly tiring to try to watch almost every move that My ALZ patient makes in order to find that something that I was going to need soon but which she found and felt the need to hide it. And, we when I finally found it stashed away somewhere she was as puzzled as me how it got to its hiding place.
136. I have learned that if we really had as many people living in this house as she believes that we do, we would be heavily overcrowded. And those people cause me much anxiety.
137. I have learned that the pain of watching My Lady being slowly taken away from me is impossible to measure. And yet, she is my greatest encourager when she assures me that everything is going to be OK. She will take me in her arms and assure me that I should not worry about her and the future. Mercy, how can she be so strong?
138. I have learned that an ALZ patient becomes afraid at the slightest thing. The joking with her that I have done all of our lives now must be done very little and with great care. If she wakes us in a good spirit and seems almost normal I may get her to laugh at something silly but if the moment is not just right I must wait until another time lest the silliness is replaced with fear. Be careful with the joking.
139. I have learned that the journey does not get easier but that I just have to catch that special moment when things seem almost normal but knowing that it is only for a moment. As quick as a flash of lightening the darkness invades again and we move on.
140. I have learned that one of my best friends is sleep because I am away from the horror of ALZ for that time. But it is hard knowing that when I open my eyes the next morning, probably the first words that I hear will make no sense at all and we are plunged into the pit of ALZ again.
141. I have learned to try to be calm when outrageous statements are made that surprise and shock me. For instance, we were at the river and a barge was moving slowly along. She said, “I was on there yesterday. I flew in and landed on it.” What do you do but shake your head and look away without comment.
142. I have learned that whatever I am doing she is going to want to help. So, I try to find something that she can help with and get her to do that. Folding clothes, helping to make the bed, washing dishes even if you have to wash them over, and other things like will help her to feel that she is contributing.
143. I have learned that it is OK to feel cheated when you see everyone else continuing with their lives as always before and you cannot do so. It is at that time that you really need a break for a few hours and be with someone with whom you can have a normal and pleasant conversation by going to lunch or something of that nature.
144. I have learned that ALZ, like Satan, never stops or rests from its horrible efforts. It never says, “I have done enough damage and taken away enough from you so I will stop.” It keeps slowly taking away from its prey and doesn’t stop until death.
145. I have learned that the medical experts tell us that ALZ patients do not know what they have and are not aware of what is happening to them, are very, very wrong. I wonder how many of the experts have ever lived 24/7 with an ALZ patients. There is a huge difference in studying test results and in living with that patient all day, every day. I believe that there are times when My Lady is fully conscious of what is happening to her. She was lying quietly beside me and said, “You don’t want to go where I am going and I am going fast.” When she was rudely and abruptly told, “You have ALZ” she knew exactly what that meant. There have been many occasions when she has said and done things that keenly shows that she knows exactly what is wrong with her, what her future holds to come degree, and nothing can be done to stop it. It is at those times when she is calm and quiet, and fully in control of her emotions. They are sad times but sweet times too. Don’t under estimate the mental ability of an ALZ patient to know what is going on in his/her world.
146. I have learned that no one has all the answers as to how to deal with ALZ. It affects each person differently and therefore what helps with one person aggravates another. Each case must be handled with what is best for each one.
147. I have learned that it is hard to determine what is confusion and what is pure mean spirit on the part of the ALZ patient. I have thought at times that My Lady knew exactly what she was doing when she was causing so much trouble but most of the time knew that it was the disease controlling her thoughts and actions. It is really hard to deal with that kind of issue.
148.
148. I have learned that it is absolutely possible to have a very, very good day and a very, very bad day on the same day because a change of feelings come that quickly. We recently had a Sunday when we attended the morning services of the church and it was a wonderful experience. However, in the afternoon she had a tremendous change of mood and by bed time I had to call our daughter for help in getting her to bed. Such a day is extremely hard to deal with.
149. I have not learned how to deal with My ALZ patient’s anger. Sometime she becomes very, very angry and it is very hard to know what to do or say. She has left my daughter and me both in tears as we looked into her eyes and listen to her words of intense anger. It is really a difficult problem.
150. I have learned that she comes almost to the place of being combative and it is then that I simply walk away and pray for wisdom to deal with this as I would with a baby.
151. I have learned that when something happens that we can share a big laugh about, it is one of the best times that we have. So I try to make those things happen as often as possible. Laughter overcomes anger and a host of other problems.
152. I have learned that in this highly technological age, videos should be made of family members enjoying great times together. I would give everything if I could see a video of her bustling smile and laugh, hear her laughter, see her eyes shining so brightly, and her beautiful face looking at us with hope for the future and grace that would fill me. I do not have one single video of her and it breaks my heart.
153. I have learned that the most painful thing that one can experience is watching the most precious earthly person slowly pass from you and there is nothing that can be done about it. 154. I have learned to never say ‘never’ when it comes to doing things that you had never thought you would do. That idea just vanishes when it comes to doing something for one so priceless and precious as the one whom you have known all of your life and have been married to for almost 64 years. One does what is best for the patient although that requires doing things that are unpleasant.
155. I have learned that if the ALZ patient can laugh at himself/herself at times it can be a precious time as patient and caregiver can enjoy a time of pleasant exchanges now and then.
156. I have learned that I forget all this advice that I share with you. Her mood changed this morning in the twinkling of an eye, going from someone sweet and tender to someone who was mad and mean. I am not accustomed to the moods changing so quickly. 157. I have learned that when I look her straight in the eye, I try to remember those eyes when she was conscious of the thoughts that we exchanged before ALZ. I just can’t bring myself to see who she is now mentally but to see who she was. 158. I have learned that other people who know us and should expect her response to their questions and other comments to not be normal, don’t respond sometimes in tender and caring way. I know that it is easy to be caught off guard but when we know the situation we just need to make a little extra effort to respond in the right way. 159. I have learned that LOVE is an absolutely invaluable necessity when being a caregiver for an ALZ patient as well as other illnesses. It must be remembered that we are dealing with an illness which the patient has no control over. It is easy to forget that your loved one is ill and not just very difficult to get along with. 160. I have learned that if it is possible two people need to work together in caring for an ALZ patient. The hours get really, really long when you are alone. 161. I have learned, and this is really hard, but there have been times that I have wished that I could just go to my place of rest but I do not want to leave her for others to care for.