Interactions – Alzheimer’s Hope

Connecting with your loved one – use tools from the past!

How can I find out what hobbies and interests my loved one with Alzheimer’s had in the past, especially in his growing-up years?
Playful Caregiver

Dear Playful,
Relatives are always a great source of information though not necessarily the information anyone wants them to reveal. If you have yearbooks or picture albums they will often indicate some of their interests. Old papers will also reveal interests, resumes used to list hobbies and interests. Look at wall plaques and awards and then Google the organizations to see if they reveal any history that would indicate interest. I am assuming that the reason you want the history is to find things that make it easier and more useful to interact when visiting. It is so commendable that you are interested and it shows great compassion and concern for your loved one. If you don’t feel you are able to acquire enough information then that too can be alright. Often, people especially in the early and milder stages are very reluctant to do the things they once did quite well. It is assumed that they are fearful that they will not be able to do it well and they would just rather not do anything. However, this too passes and then they will become quite willing to try things they never would have tried, it is one of the few advantages of illness progression. In the meantime, while you are researching you do already know the things your loved one and you enjoy together and the focus should be on enjoying and together. Perhaps one of you has a favorite food or a favorite place or a favorite book or even a favorite subject that you can go over again and again. Variety may seem important to you but “the same old thing” is very comforting to them. Even the ability to complain about “the same old thing” often offers them reassurance that they “know what is going on.” I often ask people if they ever complain about their work or their families and everyone tends to smile at the question. The important part is to show how much you care, increase the hugs and touch and even if you never hugged or touched, try it, you will be amazed at how much better it makes you both feel. I hope in some way this will assist you in finding the information you need, you sound like a wonderful person to have as a “loved one.”

Settled in at “The Home”

What’s the best way to get my dad settled in his nursing home? I tell him he can’t come home when he asks, but he gets upset, so I’m not sure if that’s the right thing to say.
Keeping The Peace

Dear Keeping the Peace,
Your intuition is exactly right telling him he can’t come home is not the right thing to say. You don’t say whether he a dementia or not but I am assuming that he does and the answer I am giving is primarily for persons with dementia. First you want to make certain that he has some familiar things in his room that look like what he had at home. This can be done with pictures, bedspread or a favorite chair or radio – especially things he has had for a long time. When you go to visit, go prepared for a visit and start concentrating on the things you can do together and enjoy during your visit. He will pick up on your stress (though he may not be able to fulfill the role in any other way he is your dad) and concern about not being able to please him and that contributes to his concerns. Bring something he loves, a picture book, pictures of some old cars, pictures of birds, mountains, architecture, something he has been interested in during his life. Also, start with a favorite thing, coffee, candy, ice cream or if he goes out or to the shop in the nursing home say something like, “Hi, I stopped by to take you for ice cream.” If you do something together and then share your pictures and whatever else you brought to help you make conversation then you have a focused visit and you can avoid the more difficult topics. Remember to greet him with a familiar greeting such as a hug, kiss, etc. just as you always have done but maybe even step it up a little. When you are conversing try to start in the middle of the sentence and try not to ask questions. For example, in a picture book say “this looks like Jack” rather than saying,” Who is this?” This provides him with an opportunity to discuss things and be the “smart and in charge person.” If the subject gets to “home” or “going home” the best answer is to get you in agreement with him. The answer to someone, if they actually says, “I want to go home” is the truth and that truth is, “so do I.” Then the very next thing you want to do is change the subject to a different subject as quickly as you can – you may need to go for ice cream again! When you are ready to leave don’t make a fuss about having to go, in fact try to arrange for a staff person to assist you with exiting. Say warm hello’s and avoid good byes, get him engaged in something else and then leave. These are some general tips and they will take some practice but you can start having better visits and when you adjust so will he.

Activities to do with your loved one

What are some fun, safe craft projects to do with Alzheimer’s patients?
Crafty Lady in Madison

Dear Crafty,
There are many fun things to do with a person with Alzheimer’s disease. Check in with your local Alzheimer’s Association (either from the phone book or www.alz.org on the computer). They have a paper called 101 things to do with a person with Alzheimer’s disease and it has a lot of quick easy ideas. A person with Alzheimer’s needs to feel useful and important but that doesn’t mean they can do the things they once did. What it often does mean is that they will try things they were always insecure about doing before. Keep in mind when they don’t know how to do something or they aren’t sure what you are asking the only safe answer is NO. So, don’t ask if they want to just get started and invite them to join or just hand them something and then proceed. They can do the same thing over and over without honestly getting tired of doing it though it often gets boring for the caregiver. Another thing to keep in mind, just because they gripe and say things like, “this is the last time I am going to do this;” as long as they are not visibly agitated they might just like to complain – most people like to complain a bit especially about work. Discussions and reminiscing about anything is really fun but it requires a technique – instead of asking questions, start in the middle of the sentence or just share knowledge, such as “when I was a little girl we used to pick mulberries at my grandmother’s farm.” If they are interested they will add something or tell a story, if not try something else. Photo albums are great again instead of saying. “Who is this?” Say, “This looks like, John.” If they don’t know and don’t care they don’t know and don’t care, if they do and you have used the wrong name it gives them a chance to correct you and for them that is a “feel good” opportunity. It isn’t what you do and it isn’t the finished project that is important what is important is that you are sharing good time together and enjoying relationship and interaction. It is important if you are the primary caregiver that you find a place where they can interact with others like themselves and have “peers or friends” and equally important for you to have that time to do things you need and want to do without them.

More about bathing

How do I get someone to take a shower when they are combative?
Rose L. in Madison

Dear Rose,
Bathing is a very difficult challenge, not only for the Alzheimer’s sufferer, but also for the caregiver. It is important for the caregiver to think first about the issue and put themselves in the position of the person with Alzheimer’s. That can best be done with a question: Is there anyone in your life that you would allow to give you a shower, because they think you need one? Would it be your parent, your child, your sibling, your spouse, your best friend, or your neighbor?

Think of it this way: having your clothing removed is a very personal and private act, and if another person were to remove your clothes without your consent, it would make you (or anyone) very combative. With that in mind, we need to then focus on the outcome – not necessarily the task. The outcome should be to maintain ones skin in good health by keeping it clean. One tool I have learned is that bathing can be done little by little, in a soothing, spa fashion, rather than giving a full shower. In addition, one must also take the time to create a rapport during bath time and develop trust regarding this private issue.

Start with several washcloths handy, and begin with a foot soak. You can roll up your loved one’s pant legs, sit on the floor and just let her soak her feet while you wash up to the knees. If that is going well, you can then start with a new warm cloth for the face. Next, move to the neck and remove the shirt or blouse “so it doesn’t get wet.” Remember, only do this if you are in a private place. You can then wash the arms, and after you dry them, apply either powder or lotion. This is not only soothing but helps the Alzheimer’s patient stay fresh and feel pampered. You may find that as you continue with this practice, “bath” time becomes less confrontational and more relaxing, and you can move closer to a full bath one step at a time.

If bath time has been difficult for some time, it may require a bit of conditioning for your loved one to feel safe again. Remember that he or she communicates primarily through emotions, and may not remember the events of the last bath time but will remember the feeling, whether fearful or comforting. Forcing someone into the shower, even if you feel you must because you have an unsanitary or “smelly” situation, creates negativity in relation to bath time. This makes it increasingly difficult for you in the future – she will remember the experience and fight it every time. When a peaceful bathing routine is established, you can avoid the fight or flight reaction.

How to break the news

Dear Jo,

My father has suffered from Parkinson’s disease for the past 14 years, and the doctor recently told us he also has Alzheimer’s. The trouble is, my dad doesn’t know yet. We want to wait until after his birthday this month, so he can still enjoy his time with our family – we’re planning a big celebration! How do we break the news?
Putting It Off

Dear Putting It Off,
My suggestion would be to evaluate, of course with input from his doctor and other family members, how you should “break the news.” I find it rather curious that the doctor told you and not him directly, so there must be some reason for that – probably not just because there is an important birthday on the horizon. These are some of the questions you should ask yourself:

• Does he need to know, and why?
• Do you think he already knows he’s having some memory impairment, and his knowledge of the disease would provide a confirmation of why he is struggling with these issues?
• What will it mean to him, and what does it mean to you, that he has Alzheimer’s?
• Will this change his care, his independence, or his current living situation?
• Will this change the family dynamics, and how?
• What do you, your family, and perhaps he need to know about Alzheimer’s so you can continue to interact positively and enjoy the time you have together?

The celebration, and how he is able to tolerate a large celebration, may already answer some of these questions. It is often stated that one of the most feared diseases is Alzheimer’s, and it is my impression that you and your family believe your father will agree with this statement. However, I have worked with persons with Alzheimer’s disease for nearly 30 years, including my own mother. It is still possible to have many good times with your father, to enjoy every visit, and to appreciate the person who exists, though he will not necessarily continue to exist in the role he once had in your lives. It is important to learn to focus on his abilities rather than his disabilities – something I’m sure you and your family have some experience with – and to focus on enjoying time together rather than the loss and changes that are taking place. There are many resources available to assist you with these questions as you travel the Alzheimer’s journey with your father.

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.

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.