My nephew’s mother has been in a memory care facility for a few years. She has early onset Alzheimer’s. He just let me know that hospice is now involved. Due to the Covid 19 virus he hadn’t been allowed to visit her since March. I asked him if he felt as if he had already lost her. I acknowledged how difficult it must be to face her impending death and he said, “Yes, it’s like losing her twice.” His sad words made me think about how complicated grief is in his situation. From our conversation, I wanted to pass along some good tips.
Grieve the losses as they come. Grief is normal. The loss and grief you experience for a loved one with dementia is ongoing: not a one-time trauma, like sudden death. Long term diseases are similar in some ways but it is different to grieve the loss of physical rather than mental connections. From the time you first notice symptoms the person with dementia is experiencing, you will see the losses and changes to cognition, personality, and abilities. As these changes happen, the loss of memory and the ability to think clearly, the inability to drive safely, or travel, or take care of one’s own needs are losses that must be grieved. The term “ambiguous grief” has been applied. It means you grieve the losses of those abilities while the person is still here physically.
I just read where people experiencing their loved ones’ deterioration due to Alzheimer’s or other types of dementia do not receive support during the process. Sadly, it can be years of dealing with the symptoms of these diseases. The caregivers are coping with the many losses and the anticipatory emotions knowing there is no turning back all while caring for their loved one’s physical needs. There are support groups that can help. I am a firm believer in one on one counseling. Ask for help. I know that is hard for a lot of folks. But, find someone to talk to. Give yourself a break.
If your loved one has to be in a care facility, don’t beat yourself up for not being able to continue caring for him or her. You can only do so much. Guilt is not helpful. Visit as often as you can. But remember to take care of yourself.
If you know someone going through this process, reach out periodically and ask if you can assist or just listen to how he or she is doing under such stressful circumstances. You can offer to stay with the patient while your friend or family member takes a needed break. Or buy him or her beer and allow him or her to vent, cry, brag, or whatever.
I would love to hear from you if you have other ideas or if you need help.
Thank you to Qingbao Meng for the beautiful photograph via Unsplash!