In an effort to make others aware of the disease, and to help those who must deal with a family member who suffers from AD, a Sallisaw man has kept a diary of his experiences, which he wishes to share.
The family asked to remain anonymous.
"I want my mother to keep her dignity," the man said.
Following is his story, as related in his daily diary. The diary has been edited for brevity, while hopefully maintaining the tragedy of a family's struggle with Alzheimer's.
The diary begins in 2002.
In an effort to cope with caring for an Alzheimer's patient, my mother, I thought I would start a daily diary, detailing what it is like, and perhaps help others who find themselves in a similar predicament.
To begin with my mother is from Covington, Va., where she has lived in the same house since 1920. At this writing she is 89 years old, and will celebrate her 90th birthday on the Dec. 28, 2002. She has two sons....me the older at 65, and the younger, 59, who lives in California.
My brother and I have been monitoring mom for several years, noticing a decline in her mental health. A sharp decline was noticed around June (2002). By the third week in August we made the decision ...to bring her to my home in Oklahoma, rather than place her in a nursing home.
I want to say at this time that during this whole time of relocating her, she has been confused at best. She really doesn't know me. She knows we are related but has no idea what the relation is.
She has lost all knowledge of geography, and has no idea where Oklahoma is, or any other place for that matter.
After arriving home, I immediately went to the hardware, purchased and installed door latches high on each of the doors that leads to the outside. This was done to prevent mom from getting up during the night and wandering off. During the trip, she tried to leave the motel on the second night at 2 a.m. A safety latch on the door was the only thing that prevented her from wandering off. She said she was going to the grocery store, and to play in the snow.
Sept. 18, 2002: The doctor attempted to examine her, but she refused, and he would not force an examination. He did prescribe a wheelchair for her. Will she use it? She is too wobbly to walk anywhere.
Sept. 21: Our daughter came over for a visit and amazingly mom knew who she was.
Sept. 22: The day has been a disaster. She decided she was going to clean some of the furniture, with Brillo pads. When I tried to stop her she became violent. She managed to ruin one table. Of course we now have to keep such cleaning agents away from her.
Sept. 26: Probably the best day yet. She was still depressed for about the first 30 minutes or so but after that she was a pure joy to have around. Her spirits are up.
Sept. 29: Not a good day. Mom had company last night and was up most of the night and into the day. Her (deceased) mother and several of her childhood friends came to visit... This continued throughout the morning. She wanted to go back to Virginia to let her mother in the house.
She spent a great deal of the day looking through the Covington phone book trying to find her mother's phone number. The rest of the day was spent crying and going on about us not wanting her, and how she didn't want to ruin our lives.
Oct. 2: Ma insisted on tipping her (hairdresser) $7 for a total of $15. She was going to leave a $52 tip until she was stopped. I have to wonder just how much money ma has given away in the past few years.
Oct. 6: The only hint of rational thought is to escape her current living arrangement, and return to Covington. I have noticed a sudden interest in using her cane. Yesterday I noticed the high latch on the side door was undone. My wife and I thought that one of us had undone it. This morning I was in the living room and heard her trying to go out the back door. After checking, sure enough she had undone the high latch and gone out the back door. Nothing at the store to fix the latch problem. Had to resort to a little tool making to get it fixed.
Oct. 7: Mom got up this morning angry, agitated and foul mouthed. It was one confrontation after another. Who are we? I want to go home! And so on. She managed to slip out the door, and somehow made it down the hill to the mail box, where she left a note, "Call the police, I'm being helped, but call the police first."
I phoned her doctor to ask for some medication that might help the situation. He prescribed Zyprexa. She was started on that this evening. Hope it helps
Oct. 8: She keeps talking about, "all the other people in the house." It dawned on both of us that she is talking about my wife and I. It seems that she can not connect the two people she is seeing right now with the two people she saw just a few minuets ago, or yesterday or last week. To her they are all different people.
Late in the afternoon I took her for a little ride. It seemed to help her disposition a little, although the conversation while out was trying to talk me into taking her to Virginia. After returning, she kept asking if we were going to take her home.
Oct. 11: Very bad day! The worst yet! Mom started out mean and vile. I asked her if she would like to go for a ride. She was eager to go, but when I let her out of the door, she bolted and tried to go down the hill. She was stumbling and about to fall down the hill, and I had to grab her. She immediately began to scream and punch me. After putting her back in the house she began screaming and beating on the front window in an attempt to attract attention of neighbors.
Oct. 14: I decided it would be OK to work in the yard for a while. I left the gate open while I went out front. After a short time, I caught a glimpse of something in a neighbor's driveway. After investigating, I saw mom heading up their driveway and into their back yard as fast as she could. I parked the mower and caught up with her. She fought all the way back to the house.
That puts an extra burden on us. Now she can't be trusted alone anytime a door is not locked down. After she returned, and for the third time she became physically aggressive toward me. That makes her unacceptable at adult day care centers. They refuse to accept anyone with a history of physical aggression.
Oct. 18: Her mood changed and the rest of the day was spent dishing out non-stop verbal abuse, accusing us of stealing her things, money, lying to her, being mean, and other negative things. It got to the point that I was trying to make arrangements for her to spend a week in a nursing home or the psycho ward of the local hospital. However she finally retreated to her room and went to bed.
The Alzheimer's Association is trying to find us some help. It can't come too soon. We all need a break from this madness
Oct. 19: Thank God! She gave us a day of rest. It was a whole day of the gentle, kind mother I had before. I have no idea what caused it but hope it lasts.
Oct. 23: During these times you have to fight the tears, and realize that you are dealing with a 90-year-old body, and a 3-year-old mind that is in a continuing state of regression. The only emotion here is pity and compassion for her.
Oct. 26: Pretty good day. She got up in a good mood, and by mid morning her face was beaming, her eyes were dancing, and she was giggling like a school girl. She was in the dining room ironing, and asked me to come in with her. I did. She was able to engage in conversation a little. The mail came about noon and she received a card from her brother. That turned out to also be a pick me up for her.
About 3 p.m. the paranoia returned, and she became mean and cranky.
Nov. 1: Today we all went to the doctor for a flu shot. The rest of the day she seemed especially confused, and all day kept jabbering nothing but psychobabble. Trying to have the simplest communication with her was impossible. It appears that her mental decline continues at an alarming rate. Although her rational moments still come, they seem to be getting fewer each day.
Nov. 5: Tried to get her involved in sewing again. I am afraid that her sewing days are over. She just can't comprehend a sewing machine.
Paranoia seems to be getting worse. Not a day goes by that we are not being accused of stealing her stuff that she misplaces or hides.
Nov. 10: She seemed quite confused until afternoon, when she asked if I had any glue to glue some acorns together. I got my hot melt glue gun and she and I sat down and glued acorns. This became one of those happy special moments. Just before supper, she got a call from her brother, and afterwards became quite agitated, and started in on going back to Virginia to see about her mother and brother Charles (both of whom are long dead). Again I explained to her that that was out of the question.
Nov. 22: She spent a good part of the day being a bit down. I guess the most remarkable thing I learned is that she has moments when she realizes that she is ill. At one point today she came in and sat beside me and said, "I guess that I am crazy as a junebug. I think that I am as crazy as a lot of those people that they have in the crazy house." I tried to explain to her that she had a disease called Alzheimer's, but it went over her head.
Nov. 24: Her mental state is very confused most of the time now, and she is noticeably in decline. The only thing she knows for sure is that her mother is alive and well, and living at 125 S. Marion St. and she needs to return to take care of her.
I tried my best this afternoon to explain to her that her mother died in April 1938, and that the house on Marion Street no longer belongs to her, she has no bank account, or any other ties there. I also tried to tell her that she has Alzheimer's and has to live under close supervision 24 hours a day. Her reply? A long blank stare, then finally; "Well I know that just before I left, momma was there with me, and she must still be there!"
Nov. 27: To put the "who's living and who's not" thing to rest, I typed up a paper identifying her mother and date of death. Where her sister and brother are and whom they are living with. Also included is her name, where she is living, and whom she is living with. I attached it to her vanity mirror, and insisted she read it.(She seems to be able to grasp the written word better than the spoken word.) I guess it backfired. She read it but was unable to understand the date of her mother's death...April 6, 1938. In her mind, her mother is alive and well and living on Marion Street when she left for Oklahoma. Her mother has made several visits since moving here. Therefore, if she died, it must have been within the past few days. She cried, and got mad at all her family and neighbors for not telling her that her mother had died. Wanted to see the obit in the newspaper. No way could I convince her that this event took place some 65 years ago!
Another note to point out some of the humor that comes with this tragic illness. Mom thinks that the wife and I are many people. She came into the living room while I was sitting in my chair watching TV. She stood next to the doorway that leads into the kitchen, where the wife was working. Pointing to the wife's chair, she asked where she was. I pointed to the kitchen. She turned and looked, and said; No! Not that one. I am looking for the girl that sits there. I just shook my head and kept watching TV. What else can you do?
Nov. 29: Nice day! After seeing the turkey, and being told once again that it was Thanksgiving, mom finally realized it. We all sat down and had our dinner after mom said grace. Of course she had to have a little cry, but otherwise it was a nice dinner. I can say that nothing is wrong with her appetite.
Dec. 3: Pretty good day. She subscribes to her home town paper. When she gets them she doesn't realize that they are three to four weeks old. This morning she was reading about the elections that took place last month, and got dressed, stood by the door waiting for someone to take her to vote.
She had one of those precious moments where she could talk with a bit of rationality. Even though it was quite sad it was worth listening to. We took a drive to see the Christmas lights, and during the ride she started calling me by her dead husband's name. Then suddenly she told us that she knew that I was not her husband but she was very confused and could not remember who people were. She went on to say that most of the time she can't remember who she is. She can write her name down, but it means absolutely nothing to her.
Dec. 13: I think the date says it all. When mom got out of bed she was wearing her panties on her head for a night cap. She came in the living room, panties on her head, and talking about having to go home and take care of her mother and sister, because her sister had gone "off the beam." When I finished my bath I could not find mom anywhere. I knew she was unable to get out of the house. I found her in the pantry, in the dark. She thought it was the bathroom.
Her entire day was spent taking all her stuff from her room and placing it by the side door. She said that it was the things she was taking home with her. The "going home" thing went on all day and into the night. She kept pounding on all the outside doors, and looking through the house for a way out. She was led to her room several times but always returned, with purse in hand, trying to find a way out. She spent most of the night on the couch, waiting to leave. At about 4 a.m. the wife finally got her to bed.
Dec. 19: Absolutely a miserable day! I noticed her walking hurriedly through the house, and on her way to the back door. By now I am able to read her like a book, and knew instantly that this was going to be an escape attempt.
Sure enough she went out the back door. I continued to watch as she tried to get out the big gate that opens onto the carport. She was unable to open that one, so went to the other side of the house and opened that gate. She was no more than two steps out the gate when I grabbed her, and pulled her back in. Like a little kid she fell to the ground and started kicking and screaming. I had to get a grip on her under her arms, and drag her back inside the house, with her screaming, kicking, slapping, and biting. Soon the wife returned, and we locked the house down and were able to calm her down to a manageable level. She continued to try to get out of the house, and was so mad at us she refused supper.
After today and much discussion about events, we increased her medication to 7.5 MG. We are hoping and praying that this works, otherwise I am afraid that we are going to have no other choice but to find other living arrangements for her. In the least, the wife and I are going to have to find a way to at least take a break from this madness!
Dec. 26: A change that has taken place over the past several weeks, has been so subtle that it has practically gone unnoticed. Increasingly her food has to be cut up for her. To do so herself is a monumental task that she can no longer handle. If her food isn't cut up for her, she picks it up with her hands and rips it apart with her teeth, like an animal would.
Jan. 13, 2003: She really got into the go-home thing today. She got her coat on, belongings in hand and began beating on all the outside doors, and shouting to her mother and brother to let her out. She became so agitated that I seriously thought of taking her to the local ER. However as a last resort, about 4 p.m. the wife took her into the bathroom, and gave her a nice hot shower, and a couple of aspirins. Then dressed her for bed. That seemed to calm her down a lot, but she continued to be very confused for the rest of the evening.
The wife and I talked about her later in the evening. We have noticed that she is forgetting the English language. Simple everyday common words are lost to her, like knife, fork, spoon. Also body parts, hand, fingers, face, mouth, nose, etc. These words are a mystery to her, therefore her ability to communicate is all but gone. The only topic that she can put two words together on is the go home and mother topics. So sad to watch!!
Jan. 23: Not a good day!
She came out of her room shortly after the wife and I got up, complaining that she had fallen during the night and that her right side was hurting real bad.
A trip to the local ER showed that she had broken two, possibly three ribs. She was sent home with a prescription for pain medication and told to take it easy.
Jan. 25: Since mom's fall, she seems to have slipped another notch. Is it the pain medication, or did it cause her to fast forward the progression of the disease?
Although bull-headed defiance still rules her every moment of the day, it seems that the use of aid devices, i.e. canes, walkers, etc., is just too overwhelming for her to master. To get her to use them, it is necessary to stand over her and bark orders like a drill sergeant. If you leave her on her own with these devices, she can't figure out how to use them.
Without using these devices, the probability of another fall skyrockets. What can we possibly do to help her? I have discussed this with medical professionals, and I would have to agree with their conclusions;
During the night, we could put her in a hospital bed, and use physical restraints to keep her there. Put her in a wheelchair and use physical restraints during the day. That would keep her safe from falling, but would destroy her self-esteem and dignity. Also it would cause other medical problems, bed sores, etc. That makes it unacceptable! A nursing home at this point would solve nothing. They would be faced with the same dilemma.
Jan. 16: She got into her defiant attitude and started standing on the couch again. After a good talking to she spent the rest of the morning and part of the afternoon pouting. After a nap, she got in the talking mood, and started a major conversation. She was having a great time telling us about something. It had something to do with getting married. I don't know who was getting, or had gotten married. I guess the real happening was the fact that she was talking, and at least the words were understandable if not some of the sentences.
To finish the day on a sour note, she became extremely agitated, and got into the go-home mode. After getting up and checking on her at about 11:30 the wife found her sleeping on the couch, and had to get her up and take her back to bed.
March 23: NOTE: Living with insanity 24/7 is surely a challenge at best. We are both holding up, but it is taking it's toll. We are becoming tired and irritable, unable to get a good night's sleep because of the stress.
April 7: Sadly, she has reached another benchmark in her life with AD. For some time now she has had increasing trouble putting on her makeup. Since she has been here, she has made a mess with face powder. She usually ends up with it all over her clothes, and we will have to vacuum it off her. Then a few months ago she began using lipstick as rouge. That practice progressed until she was getting it all over her nose, then all over her hands. This past week on a couple of occasions she would get lipstick all over her clothing, as well as her hands, and anything she would touch. This morning we had to confiscate all the lipstick in her room. She had made a pretty bad mess of her new sweater, pants, and PJs.
May 13: She got a good bill of health from the doctor. All her vital organs are healthy, and she is fine. He did however go into great detail about the health of the wife and me. He cautioned about the health effects of being a caregiver, and at some point she will have to go into a nursing home, for the good of all.
June 30: Last Tuesday I noted that the wife thinks she sees a change in mom. Since then we have noticed that Ginger, the poodle, has been hanging closer to her, and tonight she slept with her. Since Ginger was a pup she has slept in our bed with us, and has never shown any desire to do otherwise. Too she seems to be more protective of mom. The sitter pointed this out last Saturday.
July 4: She is sleeping more and more as time goes by. Today she spent most of it in bed. Otherwise in her normal daze.
We had our traditional BBQ, which includes a variety of fresh veggies from the garden I got tickled at mom eating corn on the cob. She always did like corn on the cob, and this meal she attacked the corn with a vengeance. Corn was just flying...all over her, the floor, the table, and anything else around her, with little actually being consumed.
July 10: There is a lot of information about the positive effects of babys and animals on the elderly. Yesterday mom's granddaughter, a great-granddaughter, and her new baby, a great-great-granddaughter, came for a visit, along with another great-great-granddaughter. I could not believe the up lifting reaction to the new baby. Mom really came alive, and enjoyed the new baby.
July 11: Today marks a new era for this journey. At lunch mom just couldn't cope with feeding herself and the wife had to feed her.
July 27: The day started off on a good note. We had a great lunch, enjoyed by all. Then we went for a long Sunday drive, covering some territory that none of us had seen before. However, upon returning home mom became quite agitated, and began pacing the floor. We tried to calm her down but she became hateful and belligerent. At one point she spat in the wife's face. I finally sat down beside her and held her there until she calmed down. She kept muttering things that clearly suggested that she was a young girl in about 1928.
Aug. 8: NOTE: Something I wish I could change. Mom keeps boxing herself in. She is her own worst enemy. If she is allowed to have things in her room to make it homey, she will carry them out and put them next to an outer door to be ready when "they" come to pick her up. Small items she hides so "they" won't steal them.
If we leave snacks within her reach, she pours them in the floor for the "cats" (we have no cats) to eat. If allowed access to kitchen water she will have it poured all over the place to water the "cats." She does think that the poodle is a cat, and is surly starving and dying of thirst.
We can't allow her to have candy or cookies without close supervision, as she is determined to feed them to the dog.
She can't be trusted alone in the yard, as she will do everything in her power to escape. We must keep all doors double locked at all times for the same reason. We must deny her access to all closets, as she will try to empty them to put their contents by an outer door. She will even drag a chair to the closet to climb on to get things off the shelf. In addition to closets we have to deny her access to the hot water heater room and the furnace room.
Her latest is to make a scene after a ride, when it is time to get out of the car. The past few times we have had to resort to physically extracting her from the car. I know she enjoys the rides but little does she realize that those rides are soon going to become few and far between if she fails to change her ways when returning home.
She keeps clearly saying that she does not want to go back in that house! We understand that. This house is the one place where her lack of mental function, and therefore control of herself is blatantly obvious. However, without this house, and we that are in it, she would surly be dead within days!
Sept. 14: NOTE: It has been a year now since mom came to live with us, and what a year it has been.
Looking back, it is apparent that mom was surviving on "points of reference." She knew it was morning if the Roanoke, Va., paper was on the porch, and evening if the Covington, Va., paper was on the porch. By the paper she could also tell the date. She would remember people by the arduous task of going through the phone directory until a name clicked.
There is no question in my mind that she has known for some time that she was in trouble and had to do things to keep up appearances of not being sick.
There were things she needed to do to reinforce her apparent normalcy. Go to church, to the grocery store, to the hair dresser, and to the bank to draw money. These things too were social gatherings for her, and helped her to see familiar faces, even if she could not place a name with the face.
The disease started to effect her judgment and dangerous problems were developing. She would go to the bank, and loudly state she wanted $500, and make a big deal out of it until she had the attention of everyone in the bank. She would then take the money home and in many instances hide it, then go back a day or two later and repeat the process. She also kept a lot of money in her purse. She regarded anything she received in the mail that had dollar signs and amounts on it as a bill, and acted on them.
Since moving to Oklahoma, she continues to receive these glitzy requests for donations to charities, many that I have never heard of, but obviously have been receiving donations from her.
She would make frequent trips to the grocery store, where she would purchase the same items every time. While there she would commonly pass out money to the workers in the store. Her cabinets and refrigerator were jam packed with many of the same items, yet she would buy more. One example of this was the 12 to 15 jars of gourmet mustard we found in her cabinet when we moved her.
She enjoyed church for the value of social contact, and attended regularly, and provided handsome financial support. She enjoyed the trips to the hairdresser for much the same social contact.
She began hallucinating, and hearing voices. They were becoming more and more real to her, and had become a problem. She began to wander out of the house at all hours of the day and night. A strong desire to wander is one of the leading symptoms of Alzheimer's. It became quite evident that she could no longer live alone.
She could no longer read her mail, remember to take her medication, handle money, or maintain proper nutrition. She forgot how to cook, and was very limited in her ability to choose TV dinners that were nutritious.
Her desire...her obsession to wander off became evident on the trip to Oklahoma. She desperately tried to get out of the motels during the night. This significantly interfered with the ability for the wife and me to get any restful sleep on the trip. By the last day I knew that my first task was going to be to make the house secure, or she would surely wander off at the first opportunity.
The first order of business upon arrival home was to provide security so that we could get a night's sleep without worry. Since then, a great deal of money has been spent on door locks, and chains to secure the gates in the fence. Since that time, many changes have taken place, both in mom and the necessities required to provide care. It seems that she provides us with almost daily challenges. We have learned that you can't use logic to deal with an illogical mind, nor reason to deal with one that has lost the ability to reason.
In the past year, mom has undergone many profoundly sad changes. Of these changes, her loss of communication skills is by far the worst. She simply does not have the mental capacity to read and understand the written word, and for the same reason, can not write, nor carry on a conversation. It has become a rare event for her to be able to put enough words together to communicate a thought. Usually after one or two words the thought completely leaves her.
Without her points of reference, she has no idea whether it is day or night, nor what time of day or night it is. It is a daily effort to keep her from sleeping all day and wandering about the house all night.
She recognizes no faces, names, or photographs. She has no idea who I am. No idea who the wife is, and when her grandkids come to visit, she has no idea who they are.
In late spring, I happened to catch part of a TV show that was talking about caring for an Alzheimer's patient. The lady said that at some point the patient would become little more than an animated cadaver. With the passing of time, mom is fitting that description better each day. She has little control over her bodily functions. She can't dress herself. She can't bathe herself. She can't apply makeup. She can't brush her teeth, nor use dental floss. That has to be done for her. She will try for hours to make her bed, but that has become too much of a mental challenge for her. Her food has to be finely chopped for her to be able to eat. More and more, she has to be hand fed. Quite often she will get a mouth full of food and forget what she is supposed to do next, and have to be prompted to swallow. I think I have seen no more pitiful soul in my life. To make matters worse, every time help is required, that help is met with very vocal negativism, and absolutely NO cooperation.
We try to keep her as active as we can, but that is very difficult. She is very limited in the things she can do. Any thing that requires any cognitive skills is out of the question. To take her for a walk is difficult at best. She is frail, and staggers, and wobbles and frequently falls. However she will not use a cane or walker. It seems that the operation of these devices has become too complex for her to master.
She seems to enjoy rides, but is usually unresponsive to any place she is taken. There are times though when she is stimulated to comment on something. Last week was one of those times. We drove to Magazine Mountain, an Arkansas state park. It offers some breathtaking vistas, and lots of really peaceful picnic areas. On two occasions mom responded to the stimulus. Once at an overlook she remarked, "Graaaa day! Pretty!" Then when I told her that we were having a picnic, she became excited and was eager to get out of the car.
Although she enjoys the trips, she is becoming less able to tolerate them. Right now a round trip of about 200 miles is about all she can handle. After such a trip, it takes a couple of days for her to recoup.
She is doing everything in her power to significantly limit the number of short shopping trips we take her on. On one occasion, she threw a temper tantrum in the Fort Smith shopping mall, and we had to cut that trip short. At the end of each trip, for reasons known only to her and the good Lord, she has to make an ugly scene about getting out of the car, and more times than not has to be physically removed.
Wife and I are holding up well, but are showing a little wear and tear. We soon will find an experienced and qualified caregiver to keep mom for a couple of weeks while we take a well deserved vacation.
We are fully aware that her condition will never improve, and she will continue to decline until one day she will simply forget she is alive. Until that day comes, all we can do is keep her secure, for if she had a moment she would surly wander off, as she has done on three occasions thus far.
Only God knows what challenges await us for the next year. Please keep us all in your prayers!
Oct. 9: From time to time mom somehow appears to realize her predicament and will put her heart into doing something. This morning she made a four-hour project out of making her bed, and did a fine job of it too.
Nov. 23: Mom is definitely in a downturn, and seems to be sleeping more and more as the days pass. I also notice that she is sleeping in the fetal position. I have been told that this is another part of the disease, and that she will probably die in that position.
She seems to have little left in life but to eat, sleep and go to the bathroom. Her time awake is spent mostly in bizarre behavior that I would be hard pressed to try to describe.
Dec. 5: Again she spent a lot of the day in the geri chair. At one point she was trying to talk to me and would start to say something and stop after about the third word. I kept asking "what," and finally she said that she didn't know, that she forgot before she could say it. How profound for her to say that!
Another observation over the past several days. She is forgetting how to get out of bed. I recall someone saying that this would happen, but I never thought much of it until now.
Dec. 28: Today is mom's 91st birthday, and she started out celebrating at an early hour. She started her wandering and getting into things at 1:30 a.m. then kept getting us up about every hour thereafter. By 7, she had fallen and after learning she was not hurt, I picked her up and put her in her geri chair. I should have done that at 1:30. That will keep her in one place but I would never put her in there while we sleep.
After much discussion we decided to try to take her out for a birthday dinner. We went to a very nice Chinese restaurant in Fort Smith and all had a nice time.
Jan. 1, 2004: We start the year having to feed her. Her food has to be pureed and liquids thickened. Communication skills are about nonexistent. She can't find the bathroom, and because of that...we have had to restrict her from all the house except her bedroom and the main bathroom during the night. She has forgotten how to get out of bed, and will get out on the side she would not normally get out, and is then lost.
Jan. 4: The wife and I were discussing mom today, and think we notice a change. She is either slipping or has slipped another notch in her downward spiral. Nothing really to put a finger on, but being with her all the time, we see something taking place. She just seems to be more detached, if that is possible.
A couple things we have noticed is that her breathing is becoming labored and...her appetite seems to be lessening.
Jan. 7:This was an unusual day. Mom was in the conversation mode, and was able to actually put some words together that made sense. At one time she clearly asked where her mother was. Another time she asked the wife about the wrist support she had on. I guess it would be fair to say that this was a very special day. Wish there were more of them.
Jan. 11: It appears what we have solved the case of the mysterious rash on mom's legs. She had gotten a bottle of Lysol toilet cleaner form under the bathroom sink, and was using it as lotion on her legs.
Jan. 16: Something new noticed over the past few days. She is shredding paper napkins, paper towels and toilet paper and stuffing it into her mouth in large amounts.
She seems to be more confused also. I guess the change is so subtle that it is hardly noticeable until I start looking at photos over the past year, and reflect on those. The change is significant.
Jan. 29: The rash on mom's legs is getting worse and there is an indication that it may be spreading to her arms. She has an appointment with the doctor tomorrow to see about it.
Jan. 30: The trip to the doctor resulted in a prescription for a medication...for skin rashes. He also got her an appointment with a dermatologist in a couple weeks.
Jan. 31: Just after midnight mom fell in the bathroom. We got up to help her get back on her feet, and learned that she had injured her knee, and has a problem walking now. The injury seems to be a sprain, and kept her in the geri chair for the day.
Feb. 3: Mom is unable to stand today and we called for a doctor's visit. Bottom line is she has a broken pelvis. Nothing much to do for her other than try to make her comfortable. It will take about eight weeks to heal.
Feb. 4: The wife and I have to lift her out of bed and place her in a wheelchair. That 94 pounds of dead weight is heavy, and taking its toll on both of us.
Mom spent the day complaining about having to stay in one spot all day. She can't accept that she has a debilitating injury.
Feb. 5: The home health care people came over today and qualified mom for their service. They will send someone over five days a week to help bathe and dress her. Also feed her breakfast. Also a physical therapist will come over three days a week to work with her.
Feb. 6: The home health lady came over this morning and helped the wife bathe and dress mom. That proved to be a big help.
Feb. 7: Mom's blood pressure continues to be high, and she is quite stressed by all the attention and pain. She continues to act like I have not seen her before, with posturing and a look of fear in her eyes. She appears to be having a difficult time dealing with this new development, and if she fails to accept it, I fear this marks the beginning of the end for her.
The pain medication is helping. It at least is causing her to stay in bed throughout the night, and during the day. This is necessary for the healing of her broken pelvis.
Feb. 19: Mom is definitely in less pain today. This presents another problem. She is determined to get up on her own. Of course if she is successful she will surly fall immediately and do herself harm. We may have to get an alarm to attach to her bed clothing that will alert us if she tries to get up during the night.
Feb. 20: The wife mentioned that she has noticed mom's verbalizing has become even more unintelligible in the past few weeks. She reminds me of an infant that jibber jabbers with an occasional word.
March 6: Mom is very eager to get on her feet and walk. We have to be especially careful now to see that she does not get up prematurely and fall again.
March 14: The day started with mom in a slump. She had difficulty eating the noon meal. She would get food in her mouth and have no idea what to do with it. By late afternoon she was a little more alert and was able to walk with assistance.
March 16: Still in a fog, but quite active.
March 18: She seemed to be in a fog all day.
March 19: She continued in a fog for most of the day.
March 20: She spent the day in a really bad fog. The only way I can describe it!
March 22 through 28: She continues in a deep fog...One time I even felt her pulse to make sure she as still alive.
March 29: The supervising nurse from home health care came over and said that she thinks mom is about ready for hospice care and is going to have the hospice nurse come over for an evaluation.
March 30: Mom was...in the kitchen waiting for her breakfast when I went in and sat down in front of her. She looked up and into my eyes and an expression came over her face that told me that she recognized me. I waved to her and she got a beaming smile on her face and waved back. Then it was all over and she went back into the fog.
April 7: Hospice brought in a hospital bed today. To my pleasant surprise it does make handling mom much easier.
April 9: A great day! Mom came for a brief visit. She awoke talking and continued to be alert and talkative for most of the day.
April 10: At the supper table she began to aspirate her food and feeding had to stop. However she had eaten most of her food.
April 23: We went to the produce market today and bought a large amount of snap beans. I dumped them out on the kitchen table and we all sat around snapping beans, a task mom used to enjoy doing. She tried and tried to get it going right, and after an hour or so managed to snap a dozen or so. She seemed to enjoy doing it though, and that is what really counts.
May 2: For the past couple days mom has been very sleepy, and had to be constantly encouraged to eat. We noticed one of the blisters that she has been having on her legs and arms, was breaking out on her face. The appointment with the dermatologist is still over a week away.
May 11: We took mom to the dermatologist...and found she has bullous pemphigoid, a disease of the immune system attacking the glue that holds the skin together. They had to take a biopsy to send to the Mayo Clinic to confirm the diagnosis.
May 22: Mom began the day in a fog, but by afternoon she had once again became alert, and talking. Not making any sense but talking none the less.
May 23: Mom was fidgety and very vocal all day. She was very uncooperative and disagreeable too.
May 24: We learned from the nurse that the agitation is caused by the new medications for the skin. It will soon pass.
May 27: We have noticed that the medication for the skin disease has done a good job of clearing up mom's skin. It has had another effect, that of making her more alert. That will pass with time though. We will enjoy it while we can.
June 2: What a thrilling day (sarcasm intended). About mid morning mom managed to climb out of bed and I just happened to notice her stumbling across the hall and into my bedroom. We called the nurse for advice and she suggested we call the skin doctor to see if we can lower the dosage of her meds for the skin problem.
We went to lock down to restrict her to only her room and the bathroom. In addition we hooked her up to a bed alarm. During the night she set the alarm off twice, but did not manage to get out of the bed again.
June 15: We decided we would blanch and freeze green beans. Looking back through my notes, mom helped snap beans on April 23. Today we tried our best to get her involved in snapping beans, but she had no idea what to do. She kept trying to eat them.
July 6: It was noted today that mom is returning to her fog. She is becoming quite unresponsive.
July 7: She is rapidly becoming more and more confused and now started moaning a lot. We can't determine if she is in pain, or moaning because of all the mental confusion. The latter is suspected, as there is no indication of any reason she should be in pain.
July 16: This turned out to be a special day. After she finished eating I began to try to talk to her, and started playing patty cake with her. She started to smile and showed she enjoyed the attention. I asked her if she knew who I was, and she replied in the affirmative. I then asked her if she knew my name, and again she replied yes. I then asked her to tell me what my name was. After several seconds of a blank expression, she said, "Wait a minute, and let me think about it." That was as far as it went, but it was a few moments of joy for me.
July 19: A couple of things today. Mom fell and hit the corner of the coffee table, which caused a small cut on the head. The other thing is the moaning. She moaned all day when she was not sleeping.
Aug. 8: We had a really nice day. Mom was a little more alert than usual. She sat out back while I picked green beans. We went inside and mom helped snap the beans. Something she has been unable to do for months. She also smiled at the wife a few times.
Aug. 13: Mom woke up this morning very talkative, and continued to talk all day and into the evening. Some of the talk made at least some degree of sense, and she was able to respond to questions and comments that we would make. At one point she said that she doesn't know what is wrong with her mind, that if we opened it up and looked inside we would find a mess.
Aug. 15: As quick as the alertness and talking started, it stopped. She was extremely sleepy all day, and when she was up, she was back into a deep fog.
Aug. 21: Mom continues to be quite agitated, and was able to climb out of her hospital bed, then as we watched, climbed back in, almost falling backwards. We are still wondering what we can do to prevent this from happening.
Sept. 1: The moaning and agitation continue.
Sept. 4: Really out of it today. Unable to stand or help us in any way. Mom still has congestion that she is unable to get rid of. The wife worked with her for quite a while and got her to spit up a lot of it, but this proved to be a temporary fix.
We both feel that mom has slipped another notch into oblivion.
Sept. 7: After a doctor's examination it was determined that the congestion was a buildup of secretions in her throat that would normally be swallowed, but the disease has progressed to the point that she has great difficulties swallowing and doesn't know how to spit it out.
The doctor went on to explain ...what the near future would hold. He explained that at some point she would totally be unable to swallow anything, and that she may have already reached that point. At that point there is nothing that can be done, other than keep trying to get something down her, and making her comfortable. At that time the end would come fairly quickly. He prescribed a suction machine to suck the build up of secretions out as needed.
For the rest of the day, mom was able to eat little of the noon meal as well as the evening meal. The suction machine does seem to help with the gurgling. That is a blessing.
Sept. 9: Not a good day at all. Her total consumption today was one tablespoon of pureed prunes and about as much cream of wheat. All attempts to consume anything else resulted in (her) getting choked.
Sept. 11: Mom awoke this morning alert, and pretty much back to her old self of a couple weeks ago. She ate three good meals and was quite talkative. Nothing short of miraculous.
Sept. 14: Today marks the first day of the third year she has been here.
Amazingly her ability to talk and make some sense has returned to a point of over a year ago. I got her to tell me what her last name was, but try as she may she could not tell me her first name. She also was able to tell me that she had two children, but didn't know if they were boys or girls, and had no idea where they were.
Sept. 26: Except for the moaning, it was a nice day. However, we all went for a short ride, and during the ride mom calmed down and enjoyed the ride.
Oct. 4: Mom is getting weaker. It is almost impossible for her to stand on her own feet without help on both sides.
Oct. 22: Mom is getting more tired all the time, and by 4 p.m. she can hardly function well enough to eat her evening meal. She simply has too much trouble swallowing her food. It is becoming a normal affair to pump the secretions out of her throat to clear her breathing passageway. She is then put in bed where she immediately goes to sleep.
Nov. 4: In this wacky world of Alzheimer's Disease nothing is normal, regular or typical. Life is simply turned upside down.
One thing notable is how mundane life's events now stand out, and are looked at in awe when done by the patient. To speak a rational sentence, no matter how short, a look of recognition, the mere act of doing something rational. Today she reached for a magazine and began looking at it, flipping pages and looking at each one. This is something mom hasn't done in many months and was reason for much discussion.
Nov. 5: We took mom to the hairdresser where she actually returned the hairdressers greeting and smiled. It has been a very long time since that has happened. Again after returning home she sat at the table studying me, then asked "Who are you anyway?" I tried my best to explain to her that I was her first-born son, but I never got that idea through to her. She also asked about the wife, but again drew a blank when told who she is. As she does each time she is rational, mom tried to ask several questions about her mother.
The outcome of the conversation was of no concern. The joy was in the fact that she was lucid enough to participate. Sadly this is only a fleeting moment in her downward spiral that will only reduce in numbers as time passes.
Nov. 19: She was a little more alert today. I started cutting up with her at the noon meal and actually made her laugh. Not much of a laugh but a laugh none the less. It brought joy to my heart!
Nov. 20: I woke up at about 2:30 this morning and as I always do checked on mom, rolled her over and played with the computer until I once again got sleepy. As I sat here I heard someone talking and I did not recognize the voice. I thought I had left the TV on and went to check. After investigating I learned that it was mom speaking in a voice different from any I had ever heard. You could tell by listening to her that she was definitely carrying on a conversation with probably more than one other person. However her words were not intelligible to me. She has done this many times before, and usually you can tell that she is visiting with all her dead relatives. What makes this unique is the voice she was using. It was so different that it was kind of creepy.
The mother turned 92 years old on Dec. 28, and continues to live at her son's home. He and his wife have joined a support group and have obtained some home care for his mother so he and his wife can have one night out a week.
