We Are In This Together

As the holidays show up, the losses we as caregivers experience are often brought to the forefront. No longer can we celebrate the way we used to. Everything has to be adjusted to the needs of our loved ones. But we still have the togetherness. It may be different now too, but it is even important.

As dementia develops, it is like going into a long dark tunnel. Think about how it must feel to be heading down this tunnel that gets darker as you travel. Having someone to cling to makes the journey much less scary. You may have had a good relationship before, but your loved one was probably able to envision himself operating on his own as well. Now that may not be possible. This leads to more feelings of helplessness. Now, your presence becomes crucial. And as it does, so does the fear that you will leave. That you will not want to be tied down to the helpless old wreck that they feel they have become. This in turn leads to excessive clinginess and even to delusions of infidelity.

Right from the first, talk about this as a journey you both are on. Talk about how you are in this together, and how you are in this for the long run. Remember to put everything in positive tense. For instance, say, “I’m staying right here” not “I will never leave you.” As dementia advances, the negative adjectives get lost and he may hear, “I will leave you.”

Right from the first, develop routines and rituals. Pat Snyder author of Treasures in the Darkness) tells how when her husband John was diagnosed with LBD, she told him, “We are in this together no matter what. I want you to always remember that you have TWO BRAINS now---yours and mine. I’ll act as your second brain when your first brain is feeling sick in some way. That’s my job. Your job is to trust my brain.” Because she started this early, John was able to accept the idea. Because Pat used it often, as when he saw something scary that wasn’t really there or when he became confused, John remembered and the technique helped him through many rough spots. For example, when he recently became agitated with their paid caregiver, she reminded him that he’d just had a tooth pulled and his medicine was making him cranky. She said, “You need to use my brain right now and trust her to help you. Lewy has made you ornery!" It made him laugh and he was able then to cooperate more with the caregiver.

You can also adapt the rituals and routines you already have. For example, before Morris became ill, he and Judy had the habit of leaving notes to each other. She kept this up even after he couldn’t read. Even early on, it helped. Judy could leave Morris alone while she ran errands but his time sense was going and he’d get anxious and start calling her cell in about a half an hour. She found that if she left him a note, he’d be fine for a couple of hours. She was there, with him, in that note. Later, when he was in a memory care unit, she’s stick a note over his heart before she went home and it had the same effect. He would pat the note, nod and smile. Again, Judy was “there” with him and he was peaceful.

For more about working with dementia, read our books

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders