When You Feel Helpless During End-Stage Alzheimer's: 6 Things That Help

It can be hard not to feel a certain amount of helplessness as you witness your loved one's body slowly shut down during end-stage Alzheimer's. A caregiver's impulse to do something is strong, even when there's little beyond daily care and comfort measures that can be performed. But the sad reality is that there's nothing you can do to stop the process.

What helps:

  • Realize that there's both a time for action and a time for inaction. Both belong in the ebb and flow of life.

  • Allow yourself a little grace by acknowledging what you have done in the past.

  • Remember that, while you may be the world's most loving spouse or caring child, you're not God. Neither is your loved one's doctor. There comes a point where mere humans can no longer help -- at least not in the curative sense.

  • Focus on helping by comforting and cherishing. Providing comfort is a huge benefit to someone whose body is shutting down. You can console his or her physical self while also comforting the emotional self. Talk about how you feel and how much you love and will miss the person.

  • Allow yourself to grieve. Some experts in hospice care say that our task as caregivers switches at the end of life; you may feel helpless about being able to help your loved one, but embracing grief -- even before death, when it's known as anticipatory grief -- is a form of action you can take now that helps you.

  • Don't take whatever emotions you're experiencing to be a sign of weakness or not caring. You may feel helpless in the moment, but simply having that feeling actually says a lot about your true heart. You couldn't feel such anguish if you didn't care so much.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio

almost 5 years, said...

My mom is in the final stage of Alzheimer's. She is hospitalized with a UTI infection, high fever and Mrsa infection. She has stopped eating and drinking for the past week. I am so cared that she has given up the fight and just wants to die now. It has been horrible for her in the nursing home these past two years. We did not have money to pay for a nice nursing home. We had to put her on Medicaid to get her the help she needed. No matter how much we complained about her care she has not gotten the care she so deserves. Her husband my step-dad is disabled and my sister and I. We were not able to change her diapers and bathe her. We didn't have the equipment we needed to care for her and like I said the funds to do so. She deserved so much better than she has gotten. Everything we have bought for her has been stolen from the nursing home even her clothes even though her name was written in them with permanent marker. She didn't even get the bathes like we thought she would. They didn't check to make sure she had water and ate her food. How I wish we her family were not in bad health so we could do more for her. I hate that anyone has to suffer so much! Everyone is so busy with problems of their own that they have no time to lend a hand. I have found this true with my own situation. Being disabled and needing help to take care of things in my household. My husband who I depended on just had a stroke in July. Now there is no one to help us. So far with God's help we are struggling day to day and making it. I pray that if Mom passes I will be able to be with her these days and help her as much as possible. With prayer and strength from God I am leaving it in his hands. I just want Mom to believe and know that she is loved so very much!

about 5 years, said...

It has been six months now and my sister's husband will not allow me to see her..It is not that he has said "you cannot visit" however whenever I try to set up an appointment to see her her always has some excuse to not allow it. Is there any legal action that can be taken in order to force him to let me visit?