Alzheimer’s Hope

My husband just moved into an assisted living community for persons with dementia. He paces a lot and now is walking into other peoples rooms, picking things up, and walking out with them. The staff keeps telling him to stop, and when they try to take the things away, he becomes very angry. I am afraid he will become combative with the staff. What can be done about this situation? Has he become a thief?
Troubled Wife

Dear Troubled,
Don’t worry, your husband has not undergone a moral lapse and become a kleptomaniac! This issue is quite common for people with dementia symptoms. What’s more likely is that your husband is bored, so he wanders, and he stumbles upon objects that he truly believes are his. Otherwise he wouldn’t be taking them.

It is important that you discuss with the administration that as an advertised dementia-specific facility, they should be prepared to handle this situation. The first and most important step is that your husband needs something to occupy his time, and there are a variety of activities you can use to keep him busy. In the meantime, however, the most effective approach is to give him something of his own to carry – it will make him less likely to pick up other things. For example, if he is always taking other people’s wallets, give him his own wallet to use with a library card, or other kinds of things you would put in a wallet – just make sure not to put any important personal information in it or more than a few dollars.

Another idea is to create an area at the end of the corridors which he frequents where you can place items that are his, with his name on them, so he will gravitate toward those things instead of into the other rooms. When he does go into another person’s room, you or a staff member should gently approach him and invite (never demand) him away, saying something like, “Oh! There you are, Dad, come with me. Let’s go find your things at the end of the hall.”

If he has taken something that doesn’t belong to him, do not just swipe it out of his hands! Instead, offer something he likes in trade. A few minor changes in your approach will provide him with the attention he obviously needs, and will create the best outcome for all involved. As you can see, I have used Absolute #3: Never Shame, Instead Divert! Accusing him of taking things and then trying to wrestle them away is embarrassing and frustrating to him. Because of the brain deterioration due to his disease process, his only response is to become defensive. If pushed, he will feel he must protect himself and that will naturally result in combativeness. This situation is clearly preventable.

Is really it possible for my mom to have lucid moments, even though she’s pretty deep into the Alzheimer’s journey?
Jane K.

Dear Jane,
It is not only possible, but probable that your mother will have lucid moments all throughout her journey. This tends to be one of the things that makes it so difficult to accept the disease for what it is. We think that if our loved one can have a lucid moment and understand what’s going on, even for a few minutes, then maybe they’re going to recover. Sadly, that is not the case. Think of the degenerating brain as a little like a light bulb. It can be there and present, but until someone turns on the electric current, it doesn’t work. Lucid moments seem to be like a switch that turns on suddenly, and then turns right back off, both for no particular reason – somehow, something just makes the connection.

It’s also possible for your Mom to understand things even when she has lost the ability to communicate. This is why I always instruct not to talk about our loved ones in front of them, as if they weren’t even there. Another very important thing to remember about your mother is that her feelings aren’t impaired – and by feelings, I mean both physical and emotional. She will always be able to feel touch, warmth, hugs, kindness, and how much you care for her. Keep hugging her, hold her hand, stroke her forehead and smile at her; it will help improve the journey for both of you.

My mother was recently diagnosed with Alzheimer’s. She’s originally from Germany, and didn’t learn English until she was in her 20’s. Is she going to forget English altogether? How can I communicate with her if I don’t speak her language?
Worried English-Speaker

Dear Worried,
There are many factors to determine how far back she will go in her life. There certainly have been instances where someone goes back to their teen years. She may be more comfortable speaking German than English. I worked with a lady once whose first language was French, and she seemed to be speaking French. However, we had several tutors from the city of her birth work with her, and they said that she was speaking a combination of French and English. Even though she didn’t seem to be speaking English, we were able to understand her enough to make certain her basic needs were met. My own mother’s first language was German, but her parents had not allowed any of the children to speak German after about the time my mother entered elementary school. She had very advanced Vascular Dementia prior to her death, and though she would say a few words in German, she spoke mainly English. Many people with Alzheimer’s actually lose the ability to speak at all, and if they can speak they have difficulty completing sentences and thoughts. However, regardless of language or ability to speak, it is still possible to communicate, to enjoy spending time together, and to make certain her needs are met. I wish I could promise you that your mom could be your mom. If she does lose the ability to speak English, the two of you can still play games that don’t require the use of language.

What is the youngest a person can be diagnosed with Alzheimer’s?
Curious in Canada

Dear Curious,
The youngest known diagnosis of Alzheimer’s was age 28. However it is very rare to develop the disease this young. It is estimated that only about 5% of the approximately 5 million Alzheimer’s disease cases were diagnosed under age 65 (classified as early-onset). The physician Alois Alzheimer was credited with identifying the disease first, and that case was a woman who was 51 years old. The youngest I have ever known personally was age 37 when I met him, though he had been diagnosed a few years earlier. I personally have worked with many people in their 50’s and 60’s with Alzheimer’s disease or a related dementia – and remember, dementia isn’t always Alzheimer’s disease. Sometimes it’s caused by Huntington’s, Frontotemporal Lobe damage, or Lewy Body Disease, which are all often mistaken as Alzheimer’s, though doctors are now pretty adept at identifying the differences and not just lumping them into the Alzheimer’s category.

None of that information is all that important from my perspective, because I like to focus on helping caregivers enjoy the time they have with their loved ones who have the disease. We can’t spend our lives worrying about what might happen, but we do have the choice to respond positively when something like this does happen. However, it is quite important to physicians, as there are differing medications that can make a significant impact in a person’s medical treatment. What is very important is to know that a person with Alzheimer’s is still a person, and you can still have a relationship with them regardless of their age or disability. In addition, it is very important as a concerned party that you take care of yourself – and one of the best ways to do that is to get involved in a caregiver support group.

What would you suggest when my uncle with Alzheimer’s relives a traumatic event (such as his wife’s death in a car crash) over and over? He cries and calls out, “Oh my god, are you ok? Honey, honey, are you ok?”
Daughter of a Grieving Dad

Dear Daughter,
You should do exactly what you would do if anyone were grieving a terrible tragedy. Provide him as much comfort as possible, as if the event has just occurred – because in his mind, it has! Sit with him, hold his hand if he allows you to, and let him cry. Find the tissue box. If you say anything at all, keep it simple and say something like, “I am so sorry for your pain.”

Often, spending the time to show you care enough to be present and offer a hug will make a world of difference. There is no time limit on how long it takes to work through a grief process, each individual is different. Naomi Feil, the author of Validation Therapy, has some excellent techniques and tools for assisting a person with expressing their feelings.

There is no need to try to explain that it’s not really happening or she’s already gone, just be there to comfort and calm your loved one. The pain he feels is very real, but you can be there to hold him while he goes through it. While it is always important to acknowledge and validate grief, for an Alzheimer’s sufferer, it is equally important to try to change the subject to a better subject as soon as possible. Grief work is important and essential to one’s well-being, but it is also possible that the Alzheimer’s disease is preventing him from getting to the next steps of the process.

Think of his favorite things and try to change the subject by focusing on them. My go-to answer for everything is ice cream: either bring him a bowl of ice cream, or suggest that you go out for some. The distraction doesn’t have to be food, however: you can suggest a walk, look at a book together, play favorite music, try playing a card game, anything you know he will enjoy. It is possible that the focusing on this tragedy is a result of lack of stimulation or loneliness, and offering alternatives for him to think about may reduce the likelihood of this situation.

How do I get my in-laws (including my own husband) to understand that something is wrong with their mother? She is very forgetful, asks the same questions over and over and should not be driving. I just don’t know what to do to make them understand something must be done!
Open Eyes

Dear Open Eyes,
Since you are an “outsider,” you may be looking at this situation more objectively than her sons and daughters are – kudos for you for watching out for her! However, I’m sure you are at a disadvantage as the in-law in this situation, and it is likely that you will not be the person that is successful in getting the family to do something. There are some steps you can take:

If you’re worried that her driving is unsafe, there are driving tests that are often available at medical centers. They may cost several hundred dollars, and are rarely covered by insurance. In addition, some senior centers assist senior drivers in taking exams to assist in lowering their insurance. One of these programs could test the safety of her driving, for better or for worse. If she can’t drive, you need to call an organization that will help drive her places – some are paid, some volunteer. At the same time, if you can get those support mechanisms in place and she is willing to use them, then perhaps the tests won’t be necessary as she will no longer need to drive.

As far as living alone, is she a safety risk? If so, then a geriatric care manager can be hired (again there is a fee, but they can provide an outside opinion) to do an evaluation, including a home assessment. Geriatric Care Managers have a national association and can be found through a web search. If you are not internet-savvy, then go to the local library and the librarian will assist you in finding some geriatric care managers in your vicinity (your librarian can also assist you in finding driving programs).

Last but not least, see a doctor. There are benefits in obtaining a diagnosis, as it can rule out treatable conditions. In addition, the medication now available for Alzheimer’s is more effective in earlier stages. Finally, it is very important that her legal and financial house is in order prior to obtaining any kind of dementia diagnosis.

My mother is 89 and has lived with me for the past 3 years. She has been getting more confused lately, and of course I know it’s Alzheimer’s. You have to have a lot of patience! Sometimes I cry when I see my mom so helpless. She used to care for me, now it’s the other way around. I’m at the point where I have to make a decision. How do you know when it’s time for a nursing home?
Ready For Change

Dear Ready,
It is very important that you don’t just assume her condition is Alzheimer’s. Diagnosing Alzheimer’s disease is a process called rule-out which is exactly as it sounds. The process of diagnosis rules out any other disease that may be treatable. In addition, while there is not yet a cure, there are medications that can help your mom if her doctors do think she has Alzheimer’s. The earlier you catch the disease, the more treatable it is. The time for a nursing home also varies from case to case, and doesn’t need to be grim or sad. Very often, people with Alzheimer’s disease do well when placed in a home that provides excellent Alzheimer’s care. They are able to form new relationships with peers, and can find new meaning and purpose in life. You will know the time is right when her care exceeds what you feel you can do while still maintaining her health, safety and stimulation. This decision process creates a very trying time for you, and creates a lot of guilt and indecision. In my Ten Absolutes for Caregiver Decision Making I elaborate on this with Absolute #4: Never Walk Alone, Instead Accept Help. It is imperative that you allow yourself to do that. I wish you and your mother the best!

Why don’t I get any help from my relatives? I feel like I’m all alone in this.
Isolated in Iowa

Dear Isolated in Iowa,
This is one of the most frequently asked questions I hear from caregivers, and while there are many answers, there are few solutions. The one thing that every caregiver seems to get from their relatives is criticism. Perhaps it is because we don’t get to choose our relatives! It is so much easier observe and criticize than it is to actually get up and do, that in times of difficulty the natural inclination is to criticize and avoid any responsibility. And while that is not an excuse, I do think it is an explanation.

Let us try to change the focus of the question to, “How can I get help from my relatives?” The first thing to do is to make a list of things with which you truly need assistance. Take that list and call a family meeting. If there are distant family members, this can be done via conference call. Ask for volunteers for the things you need help with and if no one can volunteer time or assistance, don’t hesitate to ask how they would like to divide the cost that will be incurred when you hire a helper to get these things done. Depending on your family situation, this may sound either too simple or too complicated, but it actually works. Bringing up the fact that your family members can indeed help by physical action or monetary contributions has provided a solution for many family members that I’ve worked with. It will help to distribute the burden you carry, and in many cases has provided a means for enjoyable interaction.

Why don’t I get any appreciation from my loved one? I do so much for my husband, and he used to be so gracious. Now he just snaps at me all the time.
Confused in Jersey City

Dear Confused,
A very basic explanation of how this disease process works is that the Alzheimer’s sufferer is unable to keep track of the most recent events that occur in his life. Unfortunately, everything you do for your husband is in the here-and-now, and he cannot show appreciation for something he cannot even remember occurred. What you have not asked is why he expects more and more from you, and it’s quite impossible to do enough. The answer to this is actually the same: he can’t recall what you have done.

I have my own little trick for explaining how this works that is unique in the healthcare industry: the Brain-Gizmo that gathers new information starts to malfunction first, meaning that it either doesn’t store new information, or can’t retrieve it when it is needed – even if it did get stored. This malfunction continues to get worse and worse, and only when it adversely affects the person’s ability to function normally in their daily life can it be considered a diagnosis of dementia.

Don’t forget that dementia is the symptom, and what is causing the dementia is what the doctor will establish upon examination. There are three causes:

1) Alzheimer’s Disease,
2) Vascular Dementia, and
3) NOS (meaning “Not Otherwise Specified,” which refers to some other disease process).

For the dementia to be considered Alzheimer’s, the patient will also have at least one of the 4 following afflictions:

1) Aphasia,
2) Apraxia,
3) Agnosia, or
4) Executive Functioning Difficulties.

To expect someone with Alzheimer’s or a related dementia to show appreciation would equate to a diabetic not having a reaction to the birthday cake you made them, just because they liked the taste of it. Your husband’s reaction is because of the disease; it is not a choice he has made, or something over which he has any control. When we as caregivers become aware of this, we can focus our anger on the disease and its symptoms. Then, and only then, can we move forward and work with the person for whom we truly care.

Why do I have to take care of things? Why didn’t my loved one do something to prevent this, or to prepare for this?
Frustrated in Ohio

Dear Frustrated in Ohio,
Historically, there has been no way to prevent a regressive degenerative brain disease. Nowadays, we have suggestions about prevention through diet, exercise and brain activity such as Sudoku or crossword puzzles, or the Alzheimer’s Association’s Maintain the Brain program. Despite all this, many people are reluctant to prepare using any of the modern-day tools we have to combat Alzheimer’s. It is my opinion that one reason for this is the fear of admitting something could go wrong for us in the future – or that something could already be wrong. It is as if ignoring bad things that might happen will make them go away, and acknowledging them will make them come true.

You don’t have to “take care of things” alone. You could give the choice and control of decision-making for your loved one to another relative, or even to a trust officer or a guardian. While that is an honest and even factual answer, it seems a very inhumane one. You have either been appointed by your family members or the responsibility has defaulted to you because no one else will take it. Good for you for being angry! While you must still safeguard the feelings of your loved ones, making that statement out loud (even to yourself) will help you maintain your emotional well-being.

The Ten Absolutes for Caregiver Decision Making compares the Alzheimer’s caregiver’s journey to the grief process best described in the book by Elisabeth Kubler-Ross, On Death and Dying. Few people are keenly aware that Alzheimer’s disease is a terminal illness so this book is very appropriate. In the stages of grief, the first one is denial, which is yet another reason your loved one did not prepare. The second stage is anger, which is why I commend you for the ability to express your anger instead of bottling it up. Now that we understand why there are strong feelings involved in this process, we can hopefully move forward in determining what the next steps should be so you can navigate this journey with the best outcome for everyone involved.