For Friends and Family

Helping Your Partner with Dementia Through The Holidays

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[Photo: Charles in 2016]

The holidays can be challenging for a person with Alzheimer’s or another dementia. Most people with dementia thrive on routine, and holiday celebrations disrupt the routine. Think about it for a moment through your partner’s eyes. They are having trouble keeping track of things and people. It takes a massive effort just to get through basic activities. Everything in their life is shifting as the dementia progresses and their ability to manage for themself decreases. And then – the holidays!

While of course the degree of challenge will depend on your partner’s stage in the dementia journey, their attitude and yours, and family dynamics, I’d like to share some tips that may make things go more smoothly.

  1. Adjust your expectations. Keeping things simple, calm, and undemanding will help your partner to enjoy the holidays. Don’t insist that they hang Christmas lights if that is a difficult chore now; consider whether having your annual party will add too much stress; and don’t expect your partner to be able to participate in the same way as last year.
  2. Prepare out-of-town family with specifics. If you expect visits from family members who haven’t seen your partner in a long time, it is kind to let them know what to expect so they aren’t shocked. Give them some guidelines for interacting with your sweetheart. When Charles was in the early stages, some family members made a trip across the country to spend some time with us. At first, they didn’t notice much difference in his abilities and behavior, but as the days went on and they saw the simple things that gave him trouble, they began to realize how much he had changed. Tell family members what you have learned: how to communicate clearly, what things might upset your partner, and what it is unreasonable to expect of them.
  3. If you are hosting a gathering, ask another person to serve as your partner’s support person. You may be busy basting the turkey at the time when your partner needs help in finding the bathroom or is asking the same question repeatedly, and there should be a designated person to provide the response or assistance your partner needs.
  4. Try to be okay with not getting a present from your partner. This was hard for me – I’m a bit of a kid when it comes to getting presents. The first year Charles had difficulty, a neighbor kindly took him to a local store and helped him to buy me a pair of earrings, which I still cherish. After that, I realized that he just couldn’t manage the “brain work” of figuring out what to get me and how to procure it. It upset me more than it should have, not because of the present itself, but because that change represented the growing lack of reciprocity in our relationship. I had to learn to let that go.
  5. Help family and friends choose appropriate presents for your partner. A gift of a Sudoku book when your partner can no longer complete the puzzles will create stress, for example. Food is always good, or something cozy, or an experience that they are still able to enjoy – all of these items may be appropriate choices. One year, Charles’ son arranged a private tour of a nearby national park, complete with transportation and a picnic lunch. It was a wonderful experience for Charles, and a stress-free activity for me as well. Perhaps several family members could join together to provide a similar gift that has meaning for your partner. If your partner is still able to enjoy outings, an offer to take them someplace they’d like would probably be a gift to both your partner and to you (in the form of respite).
  6. Prepare your partner for gatherings, but not too far in advance. If you tell your partner that your daughter will be visiting in three weeks, you may have to deal with three weeks of repeated questions about when she is coming or what is going to happen. Depending on your partner’s memory and reactions, consider the best timing for letting them know about an upcoming activity or visit. You may wish to show them pictures and reminisce about the person coming to visit, to help them remember what to expect.
  7. Let people know if your partner may not recognize them. This is always a shock to family members and close friends, and it is heartbreaking. Reassure them that even if your partner doesn’t seem to know who they are, or mixes them up with someone else, their loving presence is important and can be felt.
  8. Take your time. Allow plenty of time to get ready to go out, to answer questions, and to complete any necessary tasks. If you are rushed and harried, your partner will pick up on it and may become frustrated or even angry. Managing your own stress is a gift to your partner.
  9. Be realistic about what you can do. Maybe this isn’t the year for you to host the holiday dinner. Perhaps it’s time to order presents to be shipped to the recipients instead of trying to go to the stores, wrap everything, and send it yourself. Your house may not be decorated the way you have done it up in the past. People who care about you will understand. If someone offers help, take it – even if they can’t make Great-Aunt Susan’s sweet potato casserole as well as you do.
  10. If young children will be present, consider sending them a children’s book about Alzheimer’s before the visit so that they can be prepared as well. Give their parents some tips for how to handle the kids’ questions.
  11. Watch the booze. Eggnog, wine, beer, or punch may be part of the festivities, but your partner may be on medications that don’t interact well with alcohol. Alcohol can also affect balance and may be a risk factor for falls. Consider having nonalcoholic versions of beverages available and either substituting them or switching your partner to the G-rated version after a single drink. I used to give Charles premium grape juice in a wine glass when we were socializing with our neighbors, because he’d forget he had already had his usual glass or two and keep asking for more wine, getting grumpy if I suggested he’d had enough. He enjoyed the grape juice just as much, and didn’t seem to notice my sneaky switch!
  12. Cherish your time together. Find every aspect of the holidays that you can continue to enjoy with your partner, and enjoy it fully. Play seasonal music, make or buy their favorite holiday foods, have fun with visits, and focus on being present, patient, and positive about celebrating together.

10 Ways to Support the Partner of a Person with Dementia

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Your brother is feeling lost and lonely since his wife developed Alzheimer’s. Your mom worries about your stepdad, who has moderate dementia after a series of strokes. Your friend who lives far away just told you that his husband is going into an assisted living facility because he can’t manage the physical care that the husband needs, and there is no family nearby to help. You want to support these care partners, but you aren’t sure what to do. Some of these ideas will have to be modified to account for social distancing and pandemic safety, but many will work even under current conditions. Here are some suggestions.

  1. Stay connected. Depending on your relationship, this might mean a weekly phone call, a daily check-in, an occasional card or email, or a monthly in-person visit. Don’t be offended if your friend or family member doesn’t reciprocate as usual. You may have to do the heavy lifting in this relationship for a while.
  2. Ask what form of communication works best. Your brother might prefer to email so he can describe what’s going on with his wife frankly without her overhearing. Your mom might like a call in the evening after your stepdad has gone to bed, but might find a daytime call too disruptive. Your friend might appreciate frequent brief texts just to know someone is thinking about him.
  3. Listen, listen, listen. People whose hearts are hurting sometimes just need to talk things out. Be an active listener by being fully present and responding actively, but let the person talk freely without interruption.
  4. Think hard before making suggestions. When my husband developed Alzheimer’s, many people (especially those I barely knew!) felt free to go off on long monologues detailing what they thought we ought to be doing: “My uncle had memory problems, and he took this supplement, and it really cured him!” I tried to keep in mind that their intentions were good and they were trying to help, but often I felt either overwhelmed or insulted by their suggestions. They usually didn’t know enough about the situation to be helpful, or they suggested things so obvious (“Have you talked to his doctor?”) that I felt irritated. If you truly have something you’d like to share, offer a bit of information and be sensitive to how it is received. Or simply ask if you might share a suggestion, and keep it brief unless the person clearly demonstrates interest in what you are saying.
  5. Ask for specific ways you can help, and suggest things you are willing to do. For example, if you are local, you could offer to bring over a meal once in a while or take over a chore such as mowing the lawn. If you live far away, you could offer to help research whatever resources the partner is looking for in their local area (the phone and internet will make it possible). If it is safe to do so and you feel comfortable, keeping the person with dementia company for a while so the care partner can have some time to themself is a great gift. Even keeping the person happily occupied for an hour while the partner takes a nap or does some gardening can make a big difference.
  6. Include the person with dementia. My cousin and my brother used to call and very patiently speak to my husband, who was beaming while they spoke. I’d keep the phone on speaker and help him navigate the conversation while he felt listened to and cared for (even when he got to the point where he couldn’t remember who was on the other end of the line). I loved it when neighbors would invite us over for an evening or a friend asked us to join in some board games even when my husband couldn’t participate actively – he enjoyed being around them and I was craving a two-way conversation. If you feel awkward because you don’t know how to interact with a person with dementia, have a private conversation with the care partner to get some tips.
  7. Don’t try to fix feelings. Your friend or family member is losing their partner to a progressive, terminal disease. They are grieving the loss of their relationship as they knew it. Don’t try to “cheer them up” by being relentlessly positive. If someone says, “I don’t know how I’m going to cope. He is getting worse every day,” don’t launch into a motivational speech about how strong they are. Just say, “That’s got to be so sad and a bit frightening. I know how much you love and care for him.”
  8. Accept anger. It is normal for people to get angry at their partners even when, deep down, they know that it is the dementia that is causing the conflict. If your dad begins an angry diatribe about how irrational your mother is being, hear him out rather than immediately trying to defend her or telling him she can’t help it. Ask him about his own reactions: “What is bothering you the most?” You can gradually bring the conversation around to something like, “I’m sure it must be so hard for you when Mom just can’t understand things like she used to or when she repeats the same question a million times. If you’d like, maybe we can figure out some ways to make this less aggravating. I know you realize she can’t change this.”
  9. Sweet gestures make a difference. A family member sent my husband a fidget pillow made specifically for people with dementia. It gave him a great deal of comfort and helped him stop picking at my clothing, which was driving me a bit nuts. Sending a favorite treat to the couple or flowers to the care partner can help fill in the void left when a loving partner can no longer show much appreciation. Don’t forget that birthdays and holidays can be very lonely when your partner has no idea what the occasion is or how to celebrate it, or when they are being cared for outside of the home.
  10. Educate yourself so you can have a better understanding of what the care partner is experiencing. I think of people I knew in the past who were coping with a partner’s dementia, and I realize I had very little idea of what their life was like or how dementia plays out. It meant the world to me when both of my daughters invested in learning about Alzheimer’s as I cared for their stepfather. When I wanted to brainstorm a problem with them, they had a foundation of understanding.

The basics are: stay in touch, listen without judgment, offer specific forms of help that you can comfortably provide, educate yourself, and realize that the better supported a person is, the better they can meet the challenges of caring for their spouse or partner.