How to handle the anxiety of knowing your loved one's time is closing?

You prepare, I suppose, the by understanding deep-down that the day someone dies is just another day in their life. It all comes full-circle, and every day is just another 24 hours where something unique to your life will happen. Some days it might be that you'll go to the grocery store, another day might be the day you give birth to someone, another day will be your first gray hair showing up. One day will be the last day.

This is distressing because the LAST day is permanent and you think you see it coming. However, with aging and dementia (and likely with lots of age-related illnesses), there's a lot of rollercoaster-like ups and downs that goes on before the end actually does come.

My mom was diagnosed with cancer in 1988, and I thought she would die. If I'd continued to stress out about that until she did die, I'd have gone bonkers, because she didn't die until two months ago. During the past seven years since her diagnosis with dementia, we thought she was leaving us in 2014, 2017, and 2020 before she finally did pass away on July 26. When that day came, I had come to expect it, but even so, I wasn't ready to close that chapter of my life.

You'll drive yourself nuts worrying about looking for the signs, so at some point you have to do what you've done every other day of your life -- take what comes when it comes.

I have been present when many people have passed from life. I am a registered nurse. Your mom will most likely pass when she loses the energy to rise from her bed, to eat or drink, to stay awake. If she stops eating and drinking altogether, you can expect her to pass within a week. If this happens, just make sure she is comfortable and maybe ask a family member or friend to stay with you. I would suggest it might be wise to have family and friends help you now so you will not be alone during this difficult period in your life.

When your mom passes,
if she is at home - call EMS to come and pronounce her.
If she is out of the home with you - either call EMS or go to the nearest ER.
If she has prepaid funeral arrangements, call after the EMS have done their job. They will take it from there.
If you do not have a prepaid funeral for your mother, it might be a good idea to decide on what you want to do for a memorial service. If there are not funds to deal with the remains, check to see if you can donate her body for tissue research. The facility picks up her body, uses the tissues needed, cremates the remains, and delivers them back to you within a month.

Try to maximize the value of each day that you're together.   This minute, this hour and this  day won't be repeated, so try to treat it as a unique experience. 

(That's what I tell myself when I get lazy, which is too frequently.)

My Mom will soon be 94 years & was diagnosed with dementia more than 11 years ago. We know it began even before then. Much of your first paragraph describes her perfectly, however, she does still have the occasional tantrum. She outweighs me & I've suffered a black eye & many bruises during the course of care giving. I've accepted the fact that the little old lady living in Mom's body is not my Mom, she left long ago. The lady I've gotten to know in the past 2-3 yrs of being a caregiver looks & acts nothing like my Mom & until recently had no clue who I was. A short time ago while bathing her with the help of a sister-in-law, she told me she had told the angels she was ready to go. She called me by name for the 1st time in 1-1/2 years & asked if I would tell them too. I asked if that was what she wanted, she said yes, so I promised I would tell them. She set us free. This little lady has become a beloved friend. She's totally dependent upon us to keep her safe, fed, clean & happy, but when the time comes, I hope I can let her go without guilt as that's what she wants. She told me so.

Consider getting a hospice evaluation for your dear mom.

They provide awesome support for both the patient and the family during the long slow decline.

Your profile says Mom is 91. This could be the beginning, the progression of the desease or just old age.

My Dad died at the age of 79. He took disability at 52 because of heart problems. He was pretty much bedridden after a hospital stay and Hospice was called in. Up till then he had shown no signs of Dementia but his mind had been failing. Mom was told he wouldn't last the weekend, he lasted 5 weeks and was able to enjoy Thanksgiving with his 3 kids and their families. TG day he could not talk just kind of grunted but enjoyed watching football with my brothers. At 10pm he was gotten ready for bed, Mom slept on the couch and those from out of town went to bed and the rest went to home. Mom woke up at 6am and Dad had passed in the night.

My Mom, she had been in a NH for 5 months when she started to hum which got worse as the days went on and she needed to be medicated for anxiety. The next thing, she closed her eyes and never opened them again. Then, she would not get out of her bed and was having swallowing problems. Hospice was called in. Mom stopped eating and drinking because her body was shutting down. She passed six days later, peacefully, after my nephews visit. We left at 1:30pm, she was pronounced at 2:50 pm. Mom was healthy except for the Dementia.

As Dementia progresses it effects different parts of the brain and that part of the brain dies. It has nothing to do with how healthy someone is when they pass it has to do with when the Dementia hits the part of the brain that controls heart and lungs. When that part of the brain dies, so does the person.

I would call Hospice in to have them evaluate Mom.

I am Christian so my answer is rooted in Christ. So if you don’t want that perspective don’t read on. I don’t mean it to be preachy - but it is how I process this pain and worry of which you speak.

Two things I learned recently while on a much needed retreat. My stress comes from fighting God. Once I accepted the path before me and my Mom I gained peace. Mary stood at the foot of the cross. She stood. She didn’t wail and scream and toss a hissy fit. She stood. She walked with. She accompanied.

God never wills bad things for us. He simply makes good out of a fallen world as evidenced by Christ. Who also suffered tremendously. We are all born only to die in whatever is our destiny and way of death.  I will be there walking with her until one of us is gone.  And I will find joy there amidst the pain because that is love.  No one promised us it would be easy.  So I give my worry and stress to God in prayer. It is in asking that faith grows. The more I ask, the more I come into a personal relationship with God.  Who knows - maybe that is the point? But I cry. I go to spend time before the Blessed Sacrament. And when I give in to fear and worry again - I repeat. That is all I can do. Don’t keep your anxiety and worry - give it to Christ - as many times throughout the day as necessary. When worry takes over, I replace it with a short prayer phrase. You mind can’t do two things at one time. Someone told me when you worry it simply means you don’t trust God enough. So when I am anxious and worry - I remember that!!

I had Hospice come in and help with my Husband.
I had the support of a wonderful team from the Nurse, the CNA, Social Worker and all the rest. I got the supplies, support and education I needed to help me care for my Husband.
All that said all the preparation in the world did not help the morning that he died. My Brain knew what it was supposed to know...my Heart however broke in two.
There is a great pamphlet that you can read on line called Crossing the Creek and it gives some pretty good information in a way that makes EOL (End Of Life) understandable and allows you to be more prepared.

Dear OneBlueMoon,
One thing that may help with your anxiety is to focus on the present. How is Mom right now? Is she clean and dry, warm enough, hungry? Don't concentrate on the past, or obsess about the future. Enjoy and experience the NOW. Have a conversation with your Mom, without correcting her nonsensical statements. Slow down and wait for her responses. Don't ask a lot of questions, just talk to her.
As for your constant wondering about the when and how of her final day...nobody knows that. You can expend a lot of energy worrying and wondering but that won't give you answers it will just drive you crazy! Knowledge is power so use that wasted time and energy to learn all you can about the details that worry you. (No need to become an expert on all aspects of dementia!) The Alzheimers association has books that can help you. And they also offer resources for people in your situation. There are plenty of support groups that can be very helpful and comforting. And you may even want to look into professional counseling if your anxiety has become very disruptive to your daily life.

It sounds like your Mom is a sweetheart, which is so much easier than a person who is difficult. Consider yourself lucky. But I must warn you that it could change. Dementia can affect personality.

Have you contacted Hospice? It's probably time to do that. Not only will they take care of your mother, they will also take care of YOU. They have lots of information to share with you about end of life expectations.

My Dad died of Alzheimers last summer at home, under Hospice care. I was there every day and as hard as it was to watch his daily decline I also felt somewhat honored to be taking part in his final transition. It's hard to explain, and yes, it was a terrible burden at times, but overall it gave me peace to spend those last weeks with him.

Wishing you all the best in these trying times.

It can feel excruciating watching a loved one deteriorate. I was the primary caretaker for both my (late) parents and I once shared these same thoughts.

Someday in the future, however, you will look back and feel very grateful that you were able to have this time together. You will feel pride in your relationship.

This is part of her journey and yours, and your love and generosity (with your time) are precious.

Challenge the dementia by making her life as wonderful as possible and giving her reasons to love her remaining time here.

If your mom is deteriorating, she may not be doing as well next week as she is today, so focus on the present. Sit down and write a “bucket list” of things you want to do with her and make every day count. If your list empties make another. Use this time wisely and don’t wish it to be fleeting.

If you need to, take enough breaks so that your time with her can be focused and higher quality.

Concentrate on small moments of beauty in your own life. Take time to get up a little early and watch the sunrise. Hire a caregiver to step in so you can watch a movie or even walk around the mall. Take some notice to enjoy YOUR world.

No one knows how or when anyone will pass. Instead of researching the end (which is unknown under all circumstances anyway), research and focus instead on how to make the middle the best and most enjoyable it can be for both of you.