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My mom, who has dementia, is getting worse and I see the decline in her behavior and weakening in her physical functioning everyday. She talks with more nonsensical sentences, losing her vocabularies and walking wobbly and much slower movements. She has no anger or ANY tantrums, yet very polite and considerate. She is truly an angel with a kindness I haven't seen in my years!
Every day I see her melting away, makes me more anxious and sad and it's tearing me apart internally thinking the time is getting closer.
How do you deal with this on going worrying and anxiety on a daily basis? I understand we all pass one day and with this disease it only gets worse and not better. How do you handle the thought of something is going to happen one of these days to cause her loss. The thoughts of unknown (how she will go) is extremely difficult. How have you handled that? How do you prepare yourself for the unknown? What are the usual causes of passing in the last stages especially when physically your loved ones are in a great shape (NO cholesterol, diabetes, high blood pressure etc. etc.)?

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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.)
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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.
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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.
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dseag2 Oct 2021
You're so right. My mother has had TIAs and epileptic seizures since she was in her 50's. My father was unable to get long-term insurance for her due to pre-existing conditions. She has been in and out of the hospital due to minor strokes for 20 years. Most recently it has been pneumonia and falling. She has made the cycle between assisted living and physical rehab so many times she has a favorite room in rehab. She went into hospice over a year ago but kept rallying. It was only last week, at 89, that she became bedridden due to cardiac issues and labored breathing. My father passed away almost 21 years ago. If I had worried about my mother's health during all that time I would have passed before her.
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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.
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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.
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MarshallW Oct 2021
Thank you for sharing this resource. I downloaded the .pdf of Crossing The Creek and it offers valuable information on the dying process. I wish I had read this information before my wife entered hospice as I read information like this only days before she died and it would have been helpful if I had understood a lot of things about the dying process prior to her last week of life. We all grieve differently but I was fortunate to understand that while her body was in pain, her mind and spirit were at peace and that brought me peace also when her final day arrived.
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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.
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Grandma1954 Oct 2021
If she is on Hospice all you have to do is call Hospice. They make “Death Call Visits” all the paperwork will be completed. If a funeral home has been chosen they will call the funeral home. And most likely will remain with the family until the funeral home takes the body away. If there are any cultural preparations that need to be done they will wait until the completion.
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Don't obsess about when or how death might finally happen. Take care of your mother each day. Your worrying ahead of time will not prevent or change her death. Take heart in knowing you are helping with what she needs each day.
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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.
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I saw that word 'guilt' mentioned--and I would caution you to work on ANY feelings of guilt surrounding your mom's passing. You are NOT responsible for her emotional state.

EVERY PERSON who comes into this world will eventually die. This should not be a surprise to anyone, yet over and over I see people who mourn and are wracked with guilt because they felt they 'could have done better'.

If you are caring for mom and see her inevitable decline, and deal with it in a positive way--look at it like the beginning of a great adventure for HER, instead of a loss for you--I think that would help.

I have walked right up to death's door with DH about 5 times---and I guess he wasn't ready, because he always rallied and came back. Went back to work, all the stuff of living. He is a liver transplant patient, so his dying has been thought about and planned for for many years. We're 15 years into his 2nd liver. He's only 69 but has had such an accident prone life, it's a miracle he's around.

Occasionally, I sit down and really think about what I am going to do when he does pass. It's just pre-planning, so when he does pass, it won't be such a trauma.

Our mothers are both 91. Cranky and miserable, for the most part. You can live far past your sell by date, for sure. DH's mom is way worse than mine is as far as mental health and he really struggles to care for her. My mom is just slowly falling apart. I expect she may well outlive me.

When the joy of life is gone---why would we feel anything other than relief that this earthly life is over?
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In my case, anxiety has been manifest around not knowing how much longer my mom has. I scour her medical records and google medical terms, google for EOL signs, email and call MD and RN family friends… she is in hospice, but she’s been very up and down, and hospice is unwilling to venture a timeframe guess. I’m told I must accept that no one can say how much time is left, make peace with the uncertainty, which seems wise and true, but it’s also felt impossible. Probably because financing mom’s care has been a big part of the stress, also because of all the decisions which have to be made regarding her care - what a responsibility.

In any case, Anxiety has been a huge issue for me throughout my mom’s decline. I’ve now had bouts of insomnia and full-on panic attacks. But I think I realized something: when I let myself lean into the grief and feel the sadness about losing her, the anxiety seems to abate. I don’t know if it’s because it’s physiologically hard to be sad and anxious at the same time, because unexpressed grief engenders anxiety, or what. But it seems like letting myself be sad is the healthier mental state.

I’m reading a book called “Anxiety: The Missing Stage of Grief” by Claire Bidwell Smith. It is written for those with anxiety stemming from unresolved grief (ie it is targeted to those who have already lost a loved one). But thinking it might help with anticipatory grief, I checked out an ebook version from the library. It is pretty good, and I suspect I may want to purchase a copy to read again if I need it. It outlines how a grief counselor specializing in anxiety would approach therapy.
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Clairesmum Oct 2021
Glad that you are finding some effective ways to relieve your anxiety. In hospice there is a lot of 'not sure. don't know. focus on comfort and treasure the moments." Treatments are focused on comfort, and the hospice social worker and spiritual care team members can be good sources of support. Some hospices or aging service agencies offer caregiver support groups, as well as grief support groups.
Claire Bidwell Smith is a great guide to this part of your journey.
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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!!
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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.
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I’m sorry for your situation; it’s not easy. Lost my dad to AZ earlier this year. Hospice is a godsend-talk to them about your mom. Find out her wishes upon passing if you haven’t already. Then enjoy time together now! The process can linger on or move quickly. Being there when you can, holding hands and laughing about old times is nourishing for both your souls! Try not to worry; instead believe she’ll pass when her time is right knowing you’ve been with her along this journey. God bless you both🙏
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I resonated with your post because I'm feeling some heavy emotions too as I watch my mom lose more of her memory & ability to communicate. She's not suffering and is very loving, but it's heart wrenching to see her slip away. Hopefully knowing you are not alone in what you are going through may bring you some comfort too.

For me, I deal with the emotions by labeling them & actually"feeling" the uncomfortable emotions so they can pass through and not get stuck. It's not a 'one and done' event though, I am having to label & feel the emotions a lot. It helps me get out of my head by releasing the emotions.

Maybe you can experiment with how that works for you. Maybe writing them out on paper and then shredding it may be easier at first. Today I can feel some emotions bubbling up so I know I need to give time and space for them to be released. Otherwise, my emotions will build on top of each other and it will feel heavier and heavier. If you are able, having a therapist to help you process what you are feeling can be so valuable during this difficult time.

The thoughts of preparing for the unknown is something I try to replace with realizing it's probably not good for me to know.... because that will affect my TODAY. I don't know if my time left with my mother is very short or much longer than I think it would be. Like swanalaka said, focusing on the present moment can help reduce our anxiety.

I hope all of the different responses from everyone can be a source of encouragement to you.
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You rejoice that she will be a free spirit with her inner beauty shining and her earthliness shed.

Much like a visit to Disney World, a visit to Earth has it’s great moments, it’s exhaustion, new sights to see and experiences to garner. Now you’re the one staying to ride more rides and she’s going home. Be happy for her. It sounds like the last rides frightened and upset her if she was angry.
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Bridger46146 Oct 2021
Erikka, One of the best answers I’ve read on dying. Makes me think of my Mom and Dad. My Dad would have loved the analogy with Disney World.
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OneBlueMoon: As I had to live out of state with and provide care for my late mother, I could have dwelt on the 'what if's,' e.g. when will she pass?, did I do enough?, et al. However, I knew that that would not be good to be to go on mentally. Best wishes. You are a STELLAR caregiver.
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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.
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I have a quote posted that I look at any time I start feeling over-anxious like you seem to be feeling. I don’t know who said it, but it goes like this:

“Worry doesn’t empty tomorrow of its sorrow, it empties today of its joy.”

My mother is 94 and has been with me for a year. We have had good moments and bad moments but they are “our” shared moments and someday I think I will be glad for all of them. A year ago I did not know what to expect but I guessed I would lose her sometime during the year. The medical professionals she interacted with before she moved in had all written her off even though her only real problem is age snd weakness leaving her bedridden. We were all wrong - she is still here and has some really good days.

None of us know what will happen. I try to live in the moment and treasure whatever joy I can find.
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look into hospice. compare the ones in your area. some are businesses (such as Vitas or Kindred) and some are not for profits/nonprofits (an independent hospice agency or one that is affiliated with a health care system (Kaiser, hospice program for the health care systems in your area.) Her MD needs to make a medical referral to hospice, but you can talk to a couple of places first, to get an idea of what is available. Medicare requires certain stuff to participate in a hospice, but interpretation of how to meet those conditions (such as 24 hour availability, which particular medications to provide for symptom management, etc) do vary.
Ask if the outreach person you speak to or who comes to see you and your mom is a health care professional....or what they did before they came to their current job.
Sometimes the person hired has a sales background, not a clinical one.
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To turn the question round, why are you anxious and worrying. Yes she is going to go one day - we all do - you expect that. Will you be sad and grieve, it sounds like it and it is a very normal process, not point worrying about what it will be like because for everyone it is different, but maybe a chat to a bereavement counsellor could help with what you might expect. As she is physically fit and well then her passing will probably be very peaceful, in a chair one afternoon, or when you go in one morning. There is no reason to expect any particular "difficulties" around it because she is not in pain or needing hospice etc. Most "fit" elderly people sleep more, and eat and drink less as the body begins to shut down, its a simple natural process that will cause her no distress, and you do not need to feel she is suffering. Let things happen as they do and just go with it. Enjoy what she can do and time she is with you, don't try and make her eat to keep her healthy, just let her tell you what her body is telling her it wants. Do read a book on bereavement and dying - and remember whatever you do you are doing for you and its normal to find coping strategies for before and after, but worrying is just causing you stress, be grateful she is physically well and you will have good memories of her being pleasant to be with. The usual cause of passing is simply the heart stopping nothing noticable or pain causing or changing behaviour just a simple physical body action. Hugs to you - enjoy her time with you and let the future take care of itself.
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Benton Oct 2021
You're so insensitive. Everyone isn't the same. Obviously she's asking because it's bothering her. I recently lost my mother after caring for her 3 years. We may know that the time is coming. But when you love someone so dearly it's not easy. Shame on you. Though you offer her resources the way that you started out is harsh.
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