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.”

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 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.

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.

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 (, 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!