Loss of appetite: is it the end?

My 82-year-old grandfather has stopped eating in the last couple of weeks, and has lost about 20 lbs. He has advanced pneumonia and bed sores. Is his loss of appetite on purpose, because he’s ready to go, or should we still try to make him eat? He made it clear in his power of attorney that he doesn’t want any drastic measures taken, such as a feeding tube.
Wanting to Do The Right Thing

Dear Wanting,
Your grandfather obviously wanted you to know his wishes for his end times, because of his power of attorney instruction. With that in mind, it is important to make certain he is comfortable and knows how much you care about him in his time of illness. I would be surprised if he was not eating “on purpose,” as if he were intentionally trying to die. The body shuts down naturally, and that will often come to pass by naturally decreasing the desire for food and liquid intake. While I honestly don’t think it is possible to make someone eat, it is wise to offer food and liquids – especially some of his favorite things. If he eats or drinks it, fine; if not, that’s fine too.

Hospice is a truly wonderful and beneficial program for people like your grandfather. I would suggest that you ask you physician about hospice and get involved with that program. They can make certain your grandfather is comfortable and will serve as both a medical support system for him, and as a spiritual/counseling support for you in this time of decision, loss and grief.

Spend quality time with your grandfather, hold his hand. If you had favorite songs together, play the music and possibly even sing along. Talk to him, even if he doesn’t respond, and tell him all the things that made him special to you. Thank him for being in your life and tell him how much you love him. Sometimes it is comforting to stroke his arm or his forehead, you can usually tell by his body language if this touch is being well received. Concentrate on the good things in your life together.

Repetitive behavior

My Mom has moderate Alzheimer’s, and she’s recently started getting bruises on her hands because she’s clenching her thumb and forefinger so hard. I tried giving her a stress-ball to squeeze, and the doctor thought she should use a hand-grip for this. Nothing has worked. Any suggestions?
Perplexed in Kentucky

Dear Perplexed,
It seems to me that if she is clenching her thumb and forefinger that hard, it may be an indicator of pain in some other part of her body. Have the doctor give her a thorough examination to rule out physical pain. I am glad your physician is involved in this process already, because there are a couple of routes you can take – both with your doctor’s help. Physical and occupational therapists may be able to help, and it is important to request both as they look at things from different perspectives and work together to find some solutions for your mom. Ultimately, they can probably determine what is causing this response and provide some solutions. An occupational therapist can even create braces that your Mom would wear, and they should work even if the stress ball and hand-grip haven’t. Based on their assessment and recommendations, they can also probably determine if there is some pain associated with this repetitive action, and give you some preventative measures necessary to address this concern.

Some things you could do that might create a relaxing environment for her is to start thinking of the things you enjoy together, maybe activities you did together during your childhood, and start focusing on doing some of those things when you see her. She might just be so stressed trying to perform as if she didn’t have this disease that she is just “hanging on for dear life.” Find ways that you and your mom can enjoy your time together. These are often the simple things in life that bring smiles, include hugs and bring up fond memories.

For my Mom and I, one of our favorite things was to blow bubbles. Just a simple bottle of bubbles and a wand, and watching the sun play on them as they rose in the air was a treat. She loved flowers, so I always brought or sent flowers for her, and we would discuss how pretty they were. My sister liked to rearrange the flowers and make them look even prettier. Mom loved to leaf through books with pictures of flowers, and I loved the fact that they had the names of the flowers by the pictures. Mom always wanted to know the names of flowers and I didn’t know, but did want to help her with that activity. We also loved to go for ice cream, which she was able to do to the end. However, if your mom can’t get out and about, you can start your visit by sharing a dish of ice cream. Again, you can insert your own memories and ideas, family albums are good – but don’t ask who people are, rather state who each picture looks like. She’ll likely be glad to help you fill in the memories associated with each picture.

When the past is gone

I’m a psychotherapist and I recently started working with a client who has been diagnosed with early-onset Alzheimer’s (he’s 57). Much of my experience involves delving into people’s past – how do I work with this patient when he is starting to forget it?
Ronald N.

Dear Ronald,
I don’t even pretend to understand how psychotherapy works, as that is not my area of expertise. However, I would like to clarify something that doesn’t ‘ring true’ in your statement. While you may be worried that the person you’re working with is starting to forget his past, that is not really how Alzheimer’s works. He is very likely to be able to remember the past, but may not be able to recall much of the very recent past.

One of the points often made regarding a person with Alzheimer’s disease is that they can remember second grade perfectly, but have no idea if they have eaten breakfast or taken their medications today. What I am guessing you may be experiencing is his inability to remember what you were discussing in your last session together. In my opinion, that could be very useful as he will have very little ability to be selective about what he tells you, and by monitoring your own notes, you could delve into his past very deeply.

My suggestion for the approach would be, “Last week we were talking about an incident in your family when you were in junior high, and your brother stole a car. Lets continue where we left off with that.” If he remembers it he will probably start right into it, if he doesn’t, then it may not be a very important event. If he can’t follow that flow of conversation, try going at it from a different perspective, such as asking about some other event or aspect of that time-period. A person with Alzheimer’s will very often pick up in the conversation if it is brief and to the point. You can usually read if they are following you by paying attention to their body language.

Your patient may be reluctant, as most people are, to answer direct questions. People with this disease so often don’t really know the answers, and the only safe answer when you don’t understand is a yes/no answer. However, if you can put him at ease and discuss time segments in his life, you will find that he’s an excellent historian, lacking only recent memories. If he is, by nature, a “pleasing person” or just has excellent social skills, he may be likely to engage in what we call “confabulation” – he may just tell you things, true or not, because that seems to be what you want to hear. Once again, this is based on his survival instinct to read your body language. The most important thing for you to understand is that the feeling part of the brain is not the area that is impaired – it is the storage and storage-retrieval that’s damaged, beginning with the most recent things and then regressing backward in time from present to past. If you can tap into his emotions this way, you can probably have great success.

When one leaves the other behind

My father died recently. He was very ill, but had no dementia. He had been taking care of my mother who was diagnosed with dementia several years ago. They had been living in their home of many years. Mom’s at home alone now, and it seems like she is doing okay. Sometimes she doesn’t even seem to know that my father is gone. Do we need to move her from her home?
Mom’s Girl

Dear Mom’s Girl,
Your mother clearly needs a return visit to the doctor who diagnosed her with dementia. He can evaluate her and, at your request, order a complete work-up for her current mental status. At the very least, an occupational therapy evaluation will determine her capability to care for herself safely, or determine if she requires 24-hour supervision based on her knowledge of emergency response strategies.

Think of this situation in comparison to a first-grade child. At this age, children usually know their name, their address, meal times, sleep schedule, and how to dial 911 if there is an emergency. When answering the phone, they generally know not to reveal private information, not to buy or accept things from strangers, and safe methods for answering the door (including not letting strangers into the house). However, even with all those capabilities, children this age are not allowed to be left home alone. Your mom should have all those capabilities, and then some.

With the help of your physician and some other health care professionals, your mother’s capabilities can be impartially evaluated to determine if she has at least the capabilities of a seven-year-old. If she can’t be alone, there are many options to help her stay in the home: a family member might be able to move in and she can attend a day center while they are at work, 24-hour care is available in the home, and there are organizations that can arrange for caretakers to share homes with the person who needs assistance. Information about these resources is often available through the doctor’s office, your geriatric care manager, or on the internet.

Dealing with anger & hurt

My father, who has Alzheimer’s, has gone through so much in the last couple of months. My mother died, we determined he couldn’t live alone, we took him out of his home, and now he is living in an assisted living community. He is very angry, and calls me all the time at work. I don’t know how to talk to him anymore and I don’t know if he is in the right living situation. What can I do? I just feel like there is no right answer.
Feeling Miserable in Denver

Dear Miserable,
Your father isn’t the only one who has gone through a lot in the last couple of months; you have gone through all of this too. It is natural for this to be an overwhelming and difficult time for both you and your father; you’re in the midst of the grief process – not only due to the loss of your mother, but the loss of your father as you always knew him. Is it possible for you to get involved in an intensive grief group in the area? It would be so helpful for you to take one of the most important steps in caregiving – taking care of yourself.

Your father has reason to be angry- and it is a part of the grieving process. In addition, he can’t really process these changes because of his cognitive impairment. He is very likely to continue to ask for your mother, as he often will not be able to remember that she has died. That subject is covered in #1 of the Ten Absolutes: Never Argue, Always Agree. Because of his memory impairment; he will not only have forgotten that your mom has died, but if you remind him he will first relive the terrible news that she has died, then forget that you reminded him.

So, the best thing to do when he brings her up is to answer honestly, “I haven’t seen her today.” Then change the subject as quickly as you can. You are likely to have the opportunity to repeat this conversation several times, which will help you practice and get better at your response. In addition, while sorting through your mind for better subjects to bring up, make notes about all the good subjects and favorite objects or activities you and your father like to do. With this list, you can plan visits and enjoy them by focusing on changing disagreeable subjects to ones that are more pleasant, and focusing on how much you love your father as a person – regardless of the challenges you may be facing.

Trouble with activities of daily living

We are having so much trouble with my mother – she absolutely refuses to brush her teeth! Before the Alzheimer’s diagnosis, she was always very cavity-prone and diligent about brushing. How are we going to get her to brush? When we ask her, she insists that she already brushed them, and becomes very upset when the subject is approached.
Frustrated in DC

Dear DC,
Personal care becomes a real issue for our loved ones with dementia, because it is not only a privacy issue but a dignity issue as well. It’s possible your mom has forgotten how to perform the task of brushing her teeth. That’s why when you confront her about it, she becomes defensive – she’s probably embarrassed!

The first thing you need to learn is to stop confronting her or arguing with her. The real issue is to get her to brush her teeth and it is much easier than it might appear. A good way to translate Absolute #8: Never Command or Demand, Instead Ask and Model is to think of the saying, “a picture is worth a thousand words.”

When you need her to brush her teeth, go with her to the bathroom and start by quietly demonstrating to your mother the way you brush your teeth, perform one step at a time, and most likely her rote memory will continue. For example, hand her the toothbrush with toothpaste on it and turn on the water. As you begin to brush your own teeth, she is likely to mimic you. You may need to take her brush, run it under the water and brush her teeth exactly as she has done for years. As you demonstrate the action and provide her with her toothbrush, standing beside her so she can see you, and brush your teeth and she will likely brush hers – in this way, a picture really is worth a thousand words.

When bathing gets difficult

How do I get someone to take a shower when they are violently combative, especially if they are soiled and must be bathed right away?
Getting Hit

Dear Getting Hit,
In my training presentations, I often refer to this situation as a “lactose moment”. As they age, some people become lactose intolerant and will have very explosive bouts of diarrhea. This is a particularly tricky situation for someone with dementia, as they may not have time to process what is happening and find their way to the bathroom. While your loved one may not have all the capabilities she once had, be assured she will still find this occurrence very embarrassing.

Absolute #3 of the Ten Absolutes says, Never Shame, Instead Distract. In this case, the distraction you will use will be the “befriending or rescuing” technique that can include a little bribery, if necessary. When you see someone in this situation it is best to find something large like a sheet or towel, and approach them and say very quietly, “you must be uncomfortable, let me help.” Wrap the sheet around them so the cold, embarrassing area is completely covered. Then, with an arm on one shoulder, have them walk with you towards an area where they can be assisted with bathing.

If they already hate bathing and are reluctant to go into the bathroom, it is perfectly alright to offer them a cup of coffee and a comfortable chair just outside or maybe even inside the bathroom. Once you get them to relax a bit, you can usually get them to move to a chair inside the shower area. If they don’t yet trust you to remove the sheet and clothing, then make certain the water is warm and comfortable. Show them the warm water with the shower wand. Then, while talking in a comforting tone, remove their shoes and socks and start running the water on the lower part of the body, even while their clothing is still on. It helps clean the clothing, and as it gets wetter it will become more uncomfortable and then you can assist them with removing the wet things. Make certain you offer them a towel or two to cover up with as the clothing is being removed to maintain their modesty and dignity. This works almost every time. Lastly, you can assist them with wrapping in a towel or another sheet and possibly even helping them get dressed before leaving the shower room.

What to do?

I would love to know how to keep patients entertained in a nursing home setting. Ma Katie (my mother in law) is too mixed up to be able to do puzzles, bingo, dominos, etc. She just sits there so much when we aren’t there. I have bought her things like crossword search,
pop up books, etc. but they seem too hard for her.

Dear Vicki,
Usually there is some programming that engages patients at the home where she stays, but even then, she may have between 4-6 hours during the day that need to be filled. It is so good of you to realize that and attempt to address her needs, especially the need she has to feel useful and purposeful.

Is she at all interested in coloring? A few ladies really like to color, and you can find amazing clip art to make coloring books. Try to find images that will remind her of things in the era she grew up in, or even patterns that she might have used for sewing, needlepoint or embroidery. Regular paper might be too flimsy, so try printing the pictures on cardstock so she can manage the paper better. This will also allow her to use markers (they can be larger for an easier grip by arthritic hands and will be easier for her to use). It is nice to provide something other than regular coloring books, as they tend to be targeted for children.

Inexpensive MP3 players with headphones are also a great tool, as you can download songs that she liked as a young person (take her date of birth, add 16-20 years and look for music from that era). If she loved any type of religious music, you can record that as well. Ask the nursing staff to put the headphones in her ears at specified times of day, and make sure they remember to remove it and put it in a safe place so that it is not lost. Often, even after someone has lost the ability to speak (though not everyone does) they will sing along with songs they knew and loved. Singing and tapping feet along with the music is very uplifting.

A great place to start looking for your mother-in-law’s favorite music are CD soundtracks from Memory Lane Media (Memorylanemedia.com, or free from Forest Pharmaceutical). It’s inexpensive and very engaging – the CD will also require someone to turn it on – and it is something you could start for her during your visit.

Family scrapbooks are also very good tools – try to write the name and place on every picture. Make certain to only use copies of photographs, as they can become damaged or lost in a nursing center. Your mother-in-law may not be able to initiate the use of the scrapbook, but if it is given to her, she can page through it and smile at the photographs – the older the photo, the better! Talk to her about who is in the picture, making sure not to “quiz” her and ask her if she knows who the subjects are.

These are just a few ideas. Hopefully as you begin to use these, it will give you more creative ideas, and the fun will grow as you see how the activities work. Remember, your mother-in-law may not be able to initiate activity, but she can still participate in many things!

Early onset Alzheimer’s

My husband has early-onset dementia. He is now 53. Do you know of any resources for someone like him? Most of the information that I can get is for people over 65 with more advanced dementia. Neither one of us is ready to deal with that. I work full time, and he cannot tolerate being at home by himself all day. Right now I take him to his brother’s, but all they do is sit around all day there! Please help!

Dear Kathleen,
Unfortunately, there are few resources for persons with early-onset dementia. You are definitely on the right track in being concerned that he has nothing to do! Does your husband seem content with the situation at his brother’s house? I am glad you both realize that he shouldn’t be home all day.

If I were you I would look for a senior day center. Even though the people there are mostly older, the staff is usually well-trained in dementia care, and knows appropriate ways to interact with him to maintain his dignity. Very often, early onset and early diagnosis (less advanced) patients enroll in these centers as volunteers, and can actually assist with much of the programming. The center may need a lot of help moving things around, pushing wheelchairs, etc., and he can truly be of assistance – which will make him feel needed.

I know a young man (in his 50’s) who did just that. The staff put him in charge of an exercise program, and with a minimal amount of support he actually ran the exercise program for the other patients in the center. The center used a video of the exercises as he stood in front and lead the group. Everyone was much more engaged and able to participate when they had a live person showing them how. As time went on, and his disease progressed, going to the center was a comfortable and developed routine – and he just segued into the program.

Resources for early-onset patients are starting to be more common in some places, and even if there’s nothing in your area, you might be able to pique some interest based on your husband’s need by talking to some local nursing facilities.

Difficult decisions

My grandmother is 90 years old. The doctors have told me that the metal plate in her head needs to be repaired, and if it is not she will likely develop an infection that could lead to her death. However at her age, anesthesia and surgery seems risky, and she will probably never really “recover.” She isn’t able to tell me what she wants due to her dementia. How do I know what to do?

Dear Unsure,
Ask yourself this question: if the dementia were not affecting her the way it is, would she believe she has a good quality of life right now? Next, do as you would do with any medical decision for yourself: ask a lot of questions. Ask your doctor if there is medication available that can prevent the infection for as long as possible, and in either case, ask what the chance of infection is in percentages: 50%? 10%? 90%? Find out what effect the surgery and anesthesia are likely to have on her, especially based on other health risks she might have. Don’t be afraid to be vulnerable. Ask your surgeon to put herself in your shoes: if it were her grandmother, would she recommend the surgery? With that information, you can make a more informed decision.
The next item to consider is that even though your grandmother can’t tell you what she wants, you are likely to know what her wishes are about her health and how she operated in life previous to her dementia. Is she a risk taker? Would she “go all out” to have yet another day? Make the decision based on what you believe she would want if she were able to make it herself. Once you’ve decided what to do based on who she is and how she lived her life, rest assured that you are acting in her best interest and don’t try to second guess yourself. It will not help your peace of mind to play “what if” games. I have worked with dementia patients for over twenty years, and the one thing I know for certain is that we have some control over the quality and comfort of life of the people for whom we care, but we have absolutely no control over when they are going to die. We can make decisions, and we make the best ones we can. The limits of modern medicine go only so far, and for good or bad, we cannot bear the burden of guilt. We simply don’t have that much control in this world.