norman m. lambert

          After the Alzheimer’s diagnosis I began reflecting back on things that happened as far back as a year before and realized that they were warning signs. “Danger, danger, Will Robinson” as the robot on “Lost in Space” would say as he rotated his arms around wildly. That was what I probably should have been getting from Mary, but even if I had, I don’t know what we could have done about it.                

          A tell tale clue that I completely missed was the difficulty she was having putting on blouses that she had to pull over her head. For almost a year she had been saying that it was so strange that she kept getting her blouse on backwards. She even said that it was funny because there was a 50/50 chance that the blouse would end up on the right way, but she ended up having on backwards more than half the time. I never really thought too much about it until I started writing this book. Then I remembered it and realized that it was another clue to the beginning of the disease that I missed.

          Later in the spring of 2003 she got lost driving at night. She was coming home from her friend Barbara’s. Barbara was her first employer in Fresno, and Mary had worked at an office in her home. She knew the neighborhood and the way home from over three years of driving it in darkness and daylight. This happened to her twice within a two month period. She said to me.  “I came out on Liberty, but I must have turned the wrong way because the street ended in a dead end, and I really did not know where I was.”  It was probably good that Minnewawa, the street she was supposed to turn left on, went about three quarters of a mile and dead ended, had it not, she might have really gotten lost.

          One Saturday in May she had a hair appointment. She had been going to this same salon and the same hairdresser for at least three years. She left the house in plenty of time for her ten o’clock appointment. About twenty minutes after ten I got a call from Joanne, the hairdresser. Mary was never late but she was today. I told her Mary was on her way, and that if she didn’t get there in the next ten minutes to call me back and I’d go look for her because she was either in an accident or had car trouble.  A few minutes later Joanne called and said Mary was there, she had just gotten a little lost on the way. This should have been a major alert, but I just thought it was due to the pressure she was under at work. The drive to the salon from our house was five miles east on Bullard, a right turn on Blackstone (a major Fresno street) one block south and a right turn into the salon parking lot. These were streets she drove almost every day. The pressure at work should have been another major clue. I missed it completely. After Barbara retired, her former secretary, who had become a super sales person and a super manager, was promoted to Barbara's job and she hired Mary to continue in her position as executive secretary. Barbara and Karen had two totally different management styles. Work that managers had done themselves under Barbara was now done by Mary so her work load exploded exponentially. For ten years I was accustomed to her working late and being under constant pressure, but in the fall of 2001 she felt and talked about the pressures of the job almost overwhelming her. My first thought was that Karen was adding more and more duties to her schedule. What I now realize is that Mary was having great difficulty doing things she had been doing almost by rote for the past ten years. Karen actually talked to her in May about her concern that Mary was having such a difficult time at work. Mary never told me about that, Karen told me later.

          In May, Mary ran the battery down in her car. She called me when she started to go home and the car wouldn't start. I drove to her office, gave her a hot-shot and got the car started. A couple of blocks from home she made a wrong turn and went way out of her way. Several days later we were going to go shopping for something and I casually said that maybe I should drive. She got very angry and demanded that I get in the car. Then she started driving very erratically. I demanded that she take me home, I told her I wouldn’t ride with her when she acted this way. She took me home, I got out and she drove off, then I worried that she might get in an accident and felt very bad but also helpless. Fortunately she came back quite soon and her mood had changed. The next day when she went to work she seemed to be fine.

          I had read enough about Alzheimer's disease and done work for a number of caregivers of Alzheimer's patients that I started making some physical changes in our home early on. Many patients with Alzheimer's Disease begin to wander out of their homes and get lost in their own neighborhoods. To prevent Mary from going out the front door I changed the deadbolt on our front door from a knob to a keyed device. Then I put a key up on the top of the door molding in case I ever needed it. I put a  padlock on our garden gate leading out to the street. That way she could go out into the backyard safely.

          Shortly after that Mary locked herself in her toilet room in the master bath. Fortunately she still understood me and I talked her into holding the door knob and turning it to release the night latch. After that I took that privacy lock set off and put on a non locking set so that I could at least open the door for her with ease if she got in and closed the door and became disoriented again.

           I also put keyed entry lock sets on both my bedroom door and the door to my office. I had moved into our second bedroom shorty after the diagnosis because she was already experiencing problems sleeping and would thrash around in bed waking me up.

          I also took the knobs off of the stove and put them up out of her reach at night after an incident where I left the gas on so low one night that it blew out and she woke me up in the early morning hours complaining of the smell in the house. She never did actually try to get out of the front door by herself during the whole time she was home. Nor did she ever fool with the stove.

          I had not realized that the only danger for Mary were the pictures and decorations on the walls and tables. Since I had done all the cooking for the past twenty-five years she never seemed to be interested in anything in the kitchen after the diagnosis. Because she was the decorator that was what she did when she began to compulsively walk from room to room. She began removing pictures from the walls and hiding them in her bedroom sometimes in drawers, sometimes under the mattress, in her clothes hamper or wrapped in pieces of her clothing that she would take out of her closet. I was afraid that she might break a glass in one of the pictures and hurt herself. But by the time she started that behavior I never caught up with her until she had totally stripped the house of all pictures.

          I came to realize that I should have put all candles, silk flowers and plastic decorative fruit in some safe storage spot. First I found her trying to eat candles, and then she was chewing on some phony grapes that were in a bowl on the mantel. One day she tried to eat the fruit in the picture on our place mats.

Learning: expect the unexpected. Every Alzheimer's disease patient is different. Very often what you plan for will not occur and what you never even thought about will. The following are some exerts from my daily diary from August of 2003 to December 2003.

August 8, 2002. I went and visited my friend, Don Bonnet at his home. His wife, Agnes (who was diagnosed with Alzheimer's three years ago) just walks around following Don wherever he goes. He has mentioned a number of times that “there is no intimacy any longer.” At first I thought he was talking about sex, but later on I realized that what he meant was that there were no more of those intimate conversations between two people who really liked each other. He takes her to day-care while he works for four hours in the afternoon. She is a very easy patient. She never fights him although she will sometimes roll around when he is trying to clean her up after a bowel movement. None of the usual medicines helped her at all. It was a very depressing visit. I felt horrible. That's where I will be very shortly.

December 23. 2002. We drove down to Gretchen’s (our daughter who lives in Corona, California) for Christmas. We had a horrible fight on the way. I stopped in Bakersfield at the IHOP for breakfast. We got a booth, which so happened to give me a view of the restroom entrance. She had to go to use the restroom. I pointed it out and she went. I thought I was watching to see when she came out but I missed her. She ended up going outside to look for me. She probably wandered around for ten minutes before she came back in and I found her. She was madder than hell at me for not being there for her and we barely got it patched up by the time we got to Gret’s, two and a half hours later.

August 9, 2002, Charlton Heston made his announcement about having Alzheimer's. Mary and I watched it together. It is very depressing to both of us. We talked about the disease, and what it had already done. There is no way to make light of any of it. Regardless of what Dr. Dayton says, it is a death sentence and there is simply no other way to look at it.

In July Dr. Dayton suggested playing cards as a way to keep her mind active. We started playing Crazy 8’s and Gin Rummy.  By October she no longer wanted to play. She could not understand what she was supposed to do with the cards. We then bought a Sorry game. We played for a month and then she lost interest because I was having to play for both of us. She doesn’t even ask about playing cards or Sorry anymore.

In September of 2002. I started teaching two classes at Clovis Adult Education. A Home Repair class and a Beginning Magic class. She went with me each night, sat in the back and read a novel. In November she stopped reading completely. She would occasionally pick up a magazine but lost interest after flipping through half a dozen pages.

She no longer watches TV. She was a channel surfer par excellence just four months ago. Now she cannot turn the TV on, can’t adjust sound, or change channels. She is, however, still addicted to La Femme Nikita, which comes on twice daily on weekdays. She broke her newest hearing aid (not her fault) and so I got her old hearing aid out. It worked but she is unable to adjust it and sometimes would put it in the wrong ear. I took her to Radio Shack and we bought an earphone set for TV watching. It is too much for her to set up on her own, so I have to do it for her but it works like a charm. Before the earphones she had to have the sound up so high that it would blast me out of the house. Now I can’t even hear the TV when I’m in my office with the door open. Nikita and the characters on the program (whose names she cannot recall without my help) are the source of our daily conversation. Actually the conversation is mostly questions, “what is our sweet______ doing?” I respond with several names to fill in the blank. Then we may or may not go on with the original thought.

November 24 2002. Thanksgiving. I realized that she can only set the table if I assist her and oversee everything. Only a month ago she was capable of setting her usually lovely table. This is progressing very fast.

          Our lives have changed drastically. Mary had worked at a job she was good at, she had many friends with whom she had daily contact in the office, and we had family gatherings in our home and at both daughters’ homes on a regular basis. I worked every day for people whom I enjoyed being around and whom I liked helping, I was doing magic regularly, and we both in good health. Within six months everything turned upside down and our lives were completely shattered. As they say, “shit happens” and it did.

A PLAN OF ACTION FOR NEW CARE GIVERS - Has your patient just been diagnosed?  Some of these ideas might help.

Appendix A
My Suggested Plan of Action
    This is written to fit one group only. That group is spouses where one has been diagnosed with A.D. and the other is healthy enough to be a caregiver.
    Immediately after the diagnosis the patient is going to go through anger, denial, depression and fear. As a caregiver and mate to this person you will be trying to comfort them while contending with the very same emotions yourself. Very quickly you must realize that as you and your patient work your way through this emotional morass you must also set a game plan in action because you have no idea how long you have until your patient will be unable to help you, unable to recognize you, unable to even communicate with you. It may be years, it may be months, only time will tell.
1) Get in touch with all relatives. The patient’s children, parents, siblings, cousins and best friends. Also, your children, parents, siblings, cousins and best friends. A big issue may come up here for the patient, and that is the one of their privacy. In most other cases it would be appropriate to respect the patient’s privacy, but with A.D. we do not know how much time we have, so we must usurp some of the patient’s rights to protect the caretaker’s long term health and sanity. If you have to make calls from another location, do so.
    Give them all the details. Fill them in on what has led up to the doctor’s appointment. Some may feel that you should get a second opinion. You may need a second opinion later on to get the patient into a skilled nursing care facility. Children sometimes do not want to believe that it could happen to their parent. If this is a second marriage for the patient it adds to the difficulties that the patient’s children from the first marriage may undergo.  They need to experience it to understand it. You and the patient can visit them or have them visit you for a few days to experience the patient’s loss of mental ability as compared with a year or two earlier.
    2) Get a power of attorney and a durable power of attorney over health care. Do these two things immediately while the patient is capable of signing their name to a document and knowing what they are doing. The first one gives you the right to handle all of your community assets, monetary and real estate and to put the patient in a home when the need for that comes. The second gives you the right to say what health care measures are used or not used with regard to the end-of-life issues regarding the patient. Those are extremely important documents. Get them immediately. Where to go to get help is different in every state. Check with your Alzheimer’s Care groups and ask for their recommendations. In some states you can get the papers from people who offer Legal Document Assistance in the Yellow Pages, or from Notaries Public. In some states you may have to use an attorney. Whatever you do, do it at once.
Obviously if there is a pre-nuptial agreement then you need an attorney. If there is a large estate or there are trusts already set up, again you need an attorney.
    3) Gather up all your financial data and understand exactly what is going on in your financial life. You must now find every hidden cache of coins, savings accounts, second and third mortgages, and life insurance policies that exist so that you can figure out exactly where you stand financially. There are counselors available to you through many of the Alzheimer’s groups to guide you once you have your complete financial records in hand. They can help you plan for the future. Do that as soon as possible.
    4) Develop resources to give you respite as a caregiver. Start early on enlisting relatives and friends to come and spend time with your patient so that you can get out and do things by yourself or with friends. See if you can get friends of the patient to take the patient out to lunch or dinner on a regular basis or maybe even on an overnight visit to their home. Check with the Alzheimer’s care groups in your area to see if there are any daycare facilities available. Daycare can be a good respite for caregivers and is usually reasonably priced. Start this early while you are still feeling good and your patient is not too demanding. Do this before you get stressed out, and you will make life much easier for yourself later on when your patient becomes demanding and difficult to deal with.
    These are just the bare bones must do things. There are more mundane things that you will need to consider. Yard work, housework, laundry, ironing, cooking, shopping, doing dishes, window washing, home repairs, auto maintenance, hair care, and personal hygiene are among the many items that one partner may have always done, that the other partner knows nothing about, and is now suddenly responsible for.
    If you haven’t paid bills in the past get someone to help you set up at a system so that you don’t neglect to pay the water bill and get it cut off at a very inconvenient time, or neglect to pay the property taxes and get hit with a sizable penalty, or overdraw your checking account and embarrass yourself by having checks bounce all over town. If your patient took care of the car, you now need to find a trustworthy mechanic who will be your ally in this always losing battle with the aging automobile.
    Your life will change. How much and how fast will depend on how fast your patient declines. Every patient with A.D. is different. Some of the most gentle and caring men become combative and physically abusive as they enter late stage Alzheimer’s. If you see that coming you must place that person in a home. You cannot put yourself at physical risk trying to care for them. If they break one of your bones, then both of you end up in a home, and that is not a desired outcome.
    Always plan ahead. Have a home in mind where you want to place your loved one. Know that it is the best place you can afford. Make sure that you can get them in when it is needed, and then you won’t have to spend time searching out a place at the last minute.
    The more you can do ahead, while you are relatively stress free, the better off you will be when the stress builds later on, and it will. It always does.

Appendix B
A Note To Physicians
    This late addition to this manuscript was suggested by Michael Dayton, M.D., who was Mary’s doctor and still is mine.  I gave him an early copy of the manuscript to read and he suggested the inclusion of a “learning” section for medical doctors.  Obviously I will not address the medical care of the patient.  What I will attempt to address will be your time with the patient’s caretaker.  Whether that person is their spouse, child, sibling, other relation, or friend, they are the individual most in need of your immediate counsel. 
    When the patient is to be told of the diagnosis they should be asked to bring that “special person” in their life, be it spouse, sibling, etc.  This will obviously upset them and they will know that something bad is coming.  Better that than to hear that they have Alzheimer’s and have to drive home or back to work afterwards all by themselves.  The second reason for this is that this is a good time for an initial counseling session.  Give the patient some literature about Alzheimer’s from the Alzheimer’s Association.  Give them the local addresses and telephone numbers of city and county organizations that offer help to Alzheimer’s patients.
Then under any pretense you can, for instance have your nurse come in to take the patient’s vital signs, etc., excuse yourself along with the caretaker.  The two of you go into your office and have a private conversation where you will tell the caretaker exactly what they are facing.
    They must know that they may have two to three years or up to ten or twelve years.  They may have a docile, helpful, cheerful patient or they may have an angry, combative one.  Whatever their patient has done in the past, i.e., cooking, yard care, paying of the bills, car care, home repair, etc., they will soon not be able to do any longer and it will have to be done by someone else.
    New financial arrangements must  be made quickly while the patient can sign the necessary forms.  The house will probably have to be secured so that the patient cannot escape and get lost.  Arrangements must be made for others to spell the caretaker for respite periods and for time for shopping, doctors appointments, etc.  And finally, arrangements for a home to place the patient in at some point in the future must be made ahead of time.
    It would be ideal at this point (and not a little self serving on my part) to put a copy of this book in their hands as this is a lot of information for them to absorb and especially since they are going to be under a great deal of stress.
    On follow-up visits with the patient it would be helpful for you as the physician to schedule time with the caretaker.  Since most Alzheimer’s patients will lose their driving privileges very quickly they will most likely be making their doctor’s visits with their caretaker.  There are two reasons for you to see the caretaker.  One, you may not be getting reliable information from your Alzheimer’s patient given their growing memory loss problem.  Two, you can quickly check on the condition of the caretaker as well as do a double check of your patient’s description of their own condition.  Since the patient’s care is entrusted more and more into the hands of the caretaker it will become increasingly important that the caretaker’s physical and mental health be maintained since they are such an integral part of your primary patient’s health and well being. Again separating the caretaker and the patient can probably be done by having your nurse do a vital signs check while the caretaker leaves the room and at that time goes into your office with you for a few minutes of personal interview and question and answer time.
    These are the times to probe the caretaker to find out if they are getting any respite time, have friends and family stepped forward to take the patient for overnight stays, for evenings out to the movies, etc., to give the caretaker respite time?  If the patient was the primary cook who does the cooking now?  Is the diet a healthy one?  Is the caretaker showing signs of depression?  If you are not their regular doctor, talk to them about depression and discuss the possibility of seeing their own physician regarding potential treatment.
    What questions does the caretaker ask you?  Do they need to make contact with the local Alzheimer’s group?  Do they need to do some reading or go on the internet about Alzheimer’s or the care of an Alzheimer’s patient?  Maybe some of the resources you first gave to the patient need to be brought out again.  You are not there to solve their problems, just to point them in the right direction.  Most of their problems will not be medical problems.  They will appreciate someone who listens to them, but you need to be able to direct them to a local group that has an ongoing support group that they can join.  They need to understand that you are there for your patient’s health needs and that includes, to some degree, their health needs (if they are not also a patient of yours).
    But, within those limited parameters, you can be of great assistance to the caretaker, who in a very real sense has now become your patient because they are now “joined at the hip”.  And the caretaker will increasingly be your most reliable source of information about your patient.
                                                        

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