It’s been a struggle to find things my husband, who has late-moderate Alzheimer’s, can do and enjoy.  Charles used to be an active person who enjoyed building things, fixing things, doing yard work, and much more.  Now I have to find creative alternatives to his sitting and picking lint off his shirt.

When he was in in the earlier stages of the disease, I was extremely frustrated because he refused to participate in things that I thought would be “good for him,” such as doing art projects, and I was worried that his functioning would decline more rapidly due to lack of stimulation.  I finally learned to chill out, pay attention to what makes him happy, and not take it personally if we try an activity and he doesn’t like it.  (At least most of the time – I’m human and I still get disappointed and frustrated at times when I try to orchestrate something I think he will like.)

Part 2 of this article will cover activities on the home front.  Here’s what I’ve come up with for activities we can do out and about.  Every person is different, and your loved one* (LO, for short) may not like any of these activities, but perhaps they will spark some ideas for you.  If your LO can still communicate their preferences to you, of course you will want to respect their ideas and desires.  In Charles’ case, he has a hard time understanding what I am describing and can’t really talk about most activities in the abstract.  “Would you like to go for a walk?” may or may not bring a clear response, and asking questions often makes him feel frustrated with his own lack of comprehension, so I often have to guess at what he might like.

Just to set the stage, I have my own consulting business and work primarily from home, although I do have work-related meetings away from home and travel from time to time.  We have a great part-time caregiver and a back-up caregiver who stay with Charles when I can’t be there.

Charles and I  go out once a week to a Chair Yoga class at the local senior center.  We are blessed with a wonderful, patient teacher who is kind and inclusive.  She makes him feel welcome and reassures him when he worries he isn’t doing something right.  I enjoy the class as well, and it is certainly physically and emotionally good for both of us.  We often eat lunch at the senior center afterwards, sometimes with a friend who attends the class.  Charles looks forward to the yoga class and so do I.  Because all exercises can be done seated, his waning balance and stamina don’t get in the way of his participation.

We also belong to a local writers’ group that meets twice a month at the library.  While Charles really can’t participate verbally, he enjoys the familiar setting and people – and the snacks!  This allows me to attend without having to pay a caregiver, and it has become a welcome part of his routine.  Consider having your loved one accompany you to a routine activity if you don’t have to worry about disruptive behavioral issues.

We go out to lunch about once a week, and this is a pleasure for Charles.  If I am going to be out for work all day or I’m away on a brief business trip, his caregiver will sometimes take him out to lunch (I pay for both their meals) in order to break up the day.  I used to feel self-conscious about ordering for him and cutting up his food, but now I just don’t care.  In addition, I now have to take him into the ladies’ room with me because he can’t manage alone in the restroom.  I no longer worry what other people think.  If anyone looks concerned, I just say, “My husband is in here with me because he needs some assistance.”  I’ve never had anyone react negatively.

We enjoy going to an occasional movie.  I try to pick movies that are uplifting and that are visually interesting enough to hold Charles’ attention even if he can’t follow the plot.  I admit to sneaking in familiar food for him (a cheese sandwich and some fruit).

We have recently moved into the realm of incontinence.  It is a game-changer in some ways, but I don’t want it to restrict us from being out and about.  I always have a “go-bag” in the car with disposable briefs, wipes, gloves, small trash bags, and a fresh pair of blue jeans, “just in case.”

Other items that help us to stay active include a lightweight transport chair (only 13 pounds, and easy to handle) and a folding rollator walker with a seat.  Usually Charles walks with a cane, but these additional mobility items allow us to go places that require more walking than he can manage.

Recently we found a wonderful activity – we are now Reading Buddies to elementary school children.  I have wanted to do this for a long time.  I contacted the program (sponsored by the United Way) and explained our situation, asking if Charles could accompany me.  He had to have a background check like any other volunteer, and now he is able to go with me to a local school while I work with two delightful little girls on their reading.  He can no longer read, but he enjoys the children and they like having “Mr. Charles” there.  I’ll include him by suggesting, “That’s a great picture – please show Mr. Charles and tell him what it is about.”  They accept him without question.  The program coordinator explained that being a buddy to a child is as important as the reading itself, and I emphasize that point to Charles.  He is proud of his participation in this program, which takes just an hour each week.

Look for volunteer opportunities that you can do with your loved one.  Depending on their remaining abilities and interests, even very limited participation can enhance self-esteem and social contact.  It is an opportunity for you to get out and do something worthwhile as well, which can break up the tedium of caregiving.

At this stage, we can still travel a little.  Charles and his caregiver recently accompanied me on a four-day business trip about three hours’ drive from home.  He enjoyed the travel, and his caregiver stayed with him in the hotel room during the day while I worked.  It is expensive to do this, as I have to pay the caregiver’s expenses as well as her salary, but it is worth it for us.  We travel together to see family, although we are no longer making trips involving airline flights or long distances.

We have a long rainy winter where we live, and with the advent of Spring I am looking forward to getting back outdoors soon.  With Charles in the transport chair, I can get some exercise on our local paved walking/biking trail while he gets some fresh air and a change of scenery.

We are also fortunate that we have a supportive community.  We make a weekly excursion to our local food coop, where the staff know Charles and greet him warmly.  They have just one little seating area with a couple of chairs, but he sits and has a root beer while I do some shopping in the small store, and then enjoys the weekly cookie we buy to bring home.

Our local Target store recently acquired a Caroline’s Cart.  This wonderful innovation is a shopping cart designed for special needs children and adults, with a built-in seat facing the person pushing.  It’s much easier than trying to maneuver a wheelchair and a shopping cart, or even the combinations that most stores have.  Charles was able to sit comfortably and see me, while I meandered around the store without feeling like I needed to rush.  Let’s all try to get our local stores to purchase these carts, which could benefit so many.

The other excursion that we make on a monthly basis is to a Memory Cafe.  This is sponsored by Senior Services and takes place in a private room of a pleasant restaurant.  People with Alzheimer’s and other dementias attend with family members, and we are treated to soft drinks or coffee (with the option to purchase food) and a delightful short concert by a volunteer musician, who plays the guitar and sings in a lovely baritone voice.  It is an opportunity to socialize without judgment and I’m grateful that these Memory Cafes are springing up around the country.  For more information about Memory Cafes and a directory, see this Memory Cafe Directory article.

I know I am lucky that Charles still has a great disposition and is mostly socially appropriate, although it is difficult for him to follow and participate in conversations. He has also always been willing for us to be open about his Alzheimer’s, and that makes things easier. This is not the case for everyone with dementia, and our circumstances will certainly change as the disease progresses.  But remaining engaged socially and cognitively can help moderate the disease process, and it can help keep you and your LO from going stir-crazy.  So explore your community and think about what activities might suit the two of you.

I have found a few key things help to make outings successful:

• Try to spread things out – don’t do too much in one day, or plan things for too many days in a row.
• Develop routine activities so that the places and people will become familiar.
• Be prepared with whatever personal items you may need, such as incontinence supplies, a change of clothing, or familiar foods.
• Keep mobility devices like a folding transport chair in your car, so you are not so limited by your LO’s lack of stamina or balance.
• Try not to feel embarrassed or self-conscious about any help you need to provide, such as cutting food or bringing your LO into the restroom.  Most people will understand.  You can also get or make cards that say “My companion has special needs and may need some extra time and assistance” to give to servers and others if that is easier for you.
• Look for special activities such as a Memory Cafe or programs sponsored by a senior center that will make it easy to accommodate your loved one.

Please follow me on Twitter @AlzPartner.

*Note on language: I’m not a huge fan of the term “loved one,” since it sounds like something a funeral director might say, but saying “the person with Alzheimer’s or another dementia in your life that you care about” is a bit cumbersome!  So I am using “loved one” or the abbreviation “LO.” I also use “they” and “their” as singular pronouns to be gender-inclusive.