Shani is at her wits end. She is the only child of Holocaust survivor parents. Over the years they have faced a great deal of difficulty with memory issues, forgetting to pay bills, failing to take medications properly and not remembering doctor’s appointments. Her mother calls her several times a day, forgetting that she spoke to her 10 minutes prior. Her father expresses concern about strangers coming through the window. He leaves random things like towels and papers around the house. Shani reached out to her relatives. Not only were they unsympathetic, but they even said that she was exaggerating. They are rarely in touch with her parents yet feel that “all seems well.” Shani feels completely alone in handling her parents’ difficulties.
Moshe is caring for his wife, Chana, who was diagnosed with dementia last year. While her symptoms are still relatively mild and she can still carry on a conversation and participate in meaningful activities, he feels like he has already lost her. He does not like to take her out, and they stopped going to the senior center. On Shabbos, he goes to shul himself and leaves her at home, even though she enjoys going to shul on Shabbos. Chana’s friends have stopped coming over since her diagnosis because they don’t know what to say to her or how to act. Now, Chana is becoming increasingly depressed. Moshe gets frustrated with Chana’s new difficulties and often lashes out at her, only to feel guilty about it afterwards.
These are two of many cases I see in my practice. Families who are caring for someone with dementia are constantly adjusting to their changing behaviors and personality and to the feelings of loss that accompany those changes. They have to deal with practical issues, such as how to manage finances and daily tasks like shopping, preparing meals, and managing medications. They may be arranging home care aides and trying to work around a parent or spouse’s resistance to receiving help. In many situations, family caregivers feel they are all alone and that even friends do not truly understand what they are experiencing.
Anger and guilt are part and parcel of the caregiving experience. It is completely understandable that Moshe will get angry after answering Chana’s question of when lunch will be served for the twentieth time. It also makes sense that he may feel guilty afterwards, after acknowledging to himself that Chana cannot help it. He may also get angry that he has to go through this whole emotional cycle.
Caregivers who find themselves in these situations can do things to help them cope.
Self-care is a necessity. Oftentimes, caregivers feel compelled to put the needs of the person they are caring for first. This can lead to the caregiver ignoring his/her own health and wellbeing and can create even more problems. It is essential to take time to attend to your own physical, emotional and spiritual wellbeing.
Ask for help. If family and friends offer assistance, take it! Make up a list of things you can use some help with so the next time someone says,” If there’s anything I can do…” you can give them a concrete task to help you with. While it may be difficult, another important thing to consider is home care. One person cannot adequately take care of someone with dementia without help. Even a little relief from practical care can make a big difference in the life of the caregiver.
Seek out emotional support. There are professionals who understand dementia and are here to provide support. There are local caregiver programs in every district in every state. There are dementia-specific organizations which provide support and education to family caregivers as well. Many of these organizations have support groups where caregivers can share their experiences with others who are going through similar things.
Be compassionate with yourself. Caregiving is hard. It brings up all sorts of difficult emotions. This is normal. Know that you are not alone and it is part of being human. There are people who understand you.
Shani found relief when she was able to find a professional who understood what she was going through. She was able to learn more about what dementia does to the brain and navigate her parents’ odd behaviors by going into their world and seeing things from their perspective. She argues with them much less. She goes to a support group and has found the encouragement and understanding she needs to helps her through her situation , even though the rest of her family does not recognize her parents’ difficulties.
Moshe was able to find a counselor with whom to discuss his issues. He also went to educational seminars about dementia to learn more about what to expect. During stressful times, he explains to himself that Chana’s difficulties are a result of her disease and now he can take a step back and not react in anger as much. He spoke openly with his family about Chana’s illness, and his sister-in-law offered to take Chana to shul and the senior center on some days. Since COVID-19, she comes over at those times to give Moshe a break.
While there are still ups and downs for Shani and Moshe, they are now able to find some balance while caring for their loved ones by seeking out support, asking for help and being gentler to themselves.
Adina Segal is passionate about helping people thrive through the difficulties life throws at them and has worked with family caregivers in different capacities over the past 13 years. Adina maintains a private practice in Brooklyn. She may be contacted at adinasegal@yahoo.com