I wonder if my Mom is reaching the end. I don't know what signs to look for but she is different now. Would you share your experience?

I agree with gardenartist. Mom has late stage dementia for at least a diagnosed 2 &half years.
My sibs didn't want to bother having a 90th bday gathering. That was 2 years ago. Each day is a challenge but also a gift for us to learn from....They made funeral arrangements, etc. But she is still here, giving back in her own way...dignity lost & found...hopefully by my sibs one day.....

Try to connect with alzheimers uk + talking point. Just google it that way. They are not based in the USA, but they are at the top when it comes to great information, wonderful caring people and lots of help. I wish you well. It is a very hard, long road. You have done a wonderful thing for your Mom and I am sure she knows this on some level.

Lastone you could always contact admin. and ask them to remove this from the forum. People will continue to answer the question if its on here especially if they don't feel like reading all the answers thusfar.

Dear Forum,

I am sorry to those who took offense to my comment to Babalou in my response back to her question of me. But you know, I don't know Babalou and and Babalou doesn't know me either. I think her question was quite personal to me regarding my mom passing away in my home. I don't even think I would ask that question of my best friend if her parent was living with her in her home. And if I did ask my best friend, I would not judge her for saying yes or no to the question. And I would not make her feel bad if she said she would or would not want that situation to go on in her own home. I think that is quite personal and should be respected as such.

Nobody knows what it is like to walk in someone else's shoes unless you have their personality, family dynamics, finances, working and living situation, and relationship with that individual. So until that happens, please be compassionate with that person.

Thank you to those who had compassion and understanding with me.

Thank you so much--
LastOne

Vstefans: Thank you also for coming to my aide along with Katie and Garden to let lifeexperiences know that none of my words to her were wrong.

Katie: Thank you for your kind comments explaining that I said to lifeexperiences-"excellent take on caregiving lifeexperiences, it is hell" was no in way offensive. Thank you for coming to my defense along with Garden. You and Garden are so sweet.

Garden: Thank you for helping me out here with lifeexperiences. I am never a negative person. This is supposed to be a loving, caregiving site. Quite frankly, her responses to my logical answers are not going along with the mindset of this supportive site.

This is what Llama wrote:

"Excellent take on caregiving, lifeexperiences! It is hell."

So, LifeExperiences, what's so offensive about that? I thought it was a compliment.

But for you to refer to her as a "big joke" is really quite insulting.

We're all struggling to do our best, under generally not optimum circumstances. Show some sympathy like the rest of the posters do.

dear Lastone, some of the answers here have me scratching my head...when my dad passed over, he was feeling the bedsheets with his fingers , some want the windows open, and some people have the second sight to know when someone will pass over...sounds like you may be one of thoes...talk to her of everything in your heart, read to her, hold her hand...she knows of your love.

life experiences I don't understand what llamalover said that came across as so awful to you? we normally stay away from such personal attacks, we are all hurting here in some way or another!

I think llamalover47 meant when she said it is an excellent "take" on caregiving that it is an excellent observation or view of it that it is hell, or horribly difficult on us all.

There are times when I am glad I can help my Mom but other times I am so angry and sad that this has been allowed to happen to her. I often feel like I have a knife in my back that is being turned very slowly and painfully. Watching someone decline this way truly can be described as hell. I miss going to her home to have coffee and a good chat with her...and now I watch her bedridden and sleeping a lot of the time here in my home. I wake up each morning and wonder what happened and why did it change so for the worse.

EMAL96, what you described with your Mom, who is around the same age as mine, is exactly what my Mom is going through. There are days that I think this is the last day, then there are days where Mom is alert making conversation but doesn't know where she is or even what time of day. Her hospitalist had suggested hospice, which I agree.

My Mom is also in a facility, not once has my Dad asked to bring her back to their home, I believe he wants to remember the great times they had over the past 72 years then to witness her condition as it is today.

As for the others on the debate to pass away at home or in a hospital/long term care, it is an individual choice. Not everyone can be a caregiver, some of us are seniors ourselves and if I had to physically care for my parents, my parents would outlive me.... I don't believe that is the master plan that my parents wanted for me.

katie222, I don't think the doctor meant that everyone lives 5 years once they are bedridden and sleep most of the time...I think he was telling me that it's about 5 years max on average. AND YAH...that seem like an awful loooooong time to me at this point too. My beautiful mother has no quality of life and all I could do is wait. Don't want her to die, but don't want her to live either. It's a very difficult process.

My husband is 59 and he's been mostly in bed for a yr some how I feel it's worst when they are moving and wake the good news is
You know where they are at when in bed do they live about 5 yrs like that I don't know. But they live far less in nursing homes in bed about two yrs tops depending on how good the
Y are cared for and how much they want to live personally I hope my husband lives much longer then that 5 I am old
I don't work so my world is him we married for better or worst richer or poor in sickness or in health I did notput a time limit on my love and care if your burned out get help daycare
If possable or part time sitter if not tell them you love them and put them in a rest home you either can do the job or can't they will understand because they love you and you tryed for as long as you could

Five years of living in bed?? Is this possible for very old people to live five years this way?

Excellent take on caregiving, lifeexperiences! It is hell.

sounds like you're in the grieving process. caretaking loved ones is ONE HELL OF A PROCESS...i have gone thru every emotion possible, guilt, feelings of being overwhelmed, not doing enough, anger, rage, exhaustion, fright...then acceptance, acknowledging that i'm doing tooooo much, so give myself a break...no more guilty feeling about anything...now i just hope they don't outlive me...then i would be worried for them!! I had a doctor tell me that once our loved ones are bedridden and sleep most of the time...average life is five years...but of course...we never know. you had lot's of greeeeaaat advice here! Take care...

LastOne is really showing signs of needing relief from overwhelming responsibility. She's a hero to her loved one, no doubt. But we support each other here and are kind to one another, she did not need to go after Babalou about living in a house where someone died. That said, in other parts of North America, kin will burn a house down that a person died in. So a wide range of beliefs is present. Fortunately, I think we are all forgiving of snappiness due to over-stress. I wish there was some way we could jointly bear the tremendous stress we each find ourselves under, depending on the day.

My Mom has been exhibiting end of life symptoms of withdrawing from the World, hallucinations and illusions, sometimes cold hands and feet, coughing, eating and drinking less, saying she is dying, purple hands...for a year and a half now.
These symptoms appear...then go away after a few days and come and go. I don't know what to believe... .She is bedridden and on hospice and the hospice team has been great. I have heard that when they can no longer swallow that this is an indicator that it could happen soon. Again with my Mom I would be skeptical but everyone is different.

As for someone dying in the home, everyone is entitled to their beliefs in this matter and I have met people that feel ok about it and others that don't like the idea. It depends where you live too. Many older homes have a long history and there were deaths and many births as well in homes and buildings. We don't know what kind of things occurred on the spot where the home was built beforehand either. When I rent or purchase a property I am first more concerned with it's location and condition and is it affordable!

My Mom is also 96 and I am feeling similar to you although unlike you, my Mom is in a nursing home as I am unable to care for her at home since she is not at all mobile. I am feeling sad and frustrated as she is sleeping whenever I come to visit. She even sleeps or appears to be sleeping when she is being fed. My communications for the past several months have been limited to minutes and all she says is "I'm sleepy" and "I love you"...but mostly the former.
The residents and staff said she has moments of alertness and she is smiling and cheerful. her BP and vitals are all good and she is on very little medication. I've questioned her doctor and he said they could do alot more tests but to what end? This sleeping has been a gradual but increasing process over the past 2 years. We moved her from assisted living to NH about 10 months ago as I felt she needed more assistance because of the sleeping increase. I am ready for the time when she just doesn't wake up...but wish we had talked more before reaching this point as I already miss her.

Call your local Hospice - you don't have to go through alone and their Hospice nurses will check her daily and let you know what to expect. Her dying is natural - no one has managed to escape death yet. Don't fear it; know she'll leave her earthly problems behind her and she'll always be watching over you. You've done your very best; no one can do more and there's not a harder job anywhere than being a caregiver. I know, I did it for 11 years. She will continue to want to sleep - let her do that. If she doesn't want to eat, don't force the issue. Please, contact Hospice (they're usually associated with Visiting Nurses - your doctor has to request them - talk to him ASAP). They will keep her comfortable, help you bathe her and as I said, they'll let you know when the end is near. Take care! Get help - don't spend another day trying to do this all by yourself.

I don't think its the same with everyone anyway. If I described my Mom's last days to you it doesn't mean that you should expect that. As someone said previously on this thread just treat every day as if it was the last and then no matter when it happens you will feel like you did the right thing. God Bless.

So, yes, I was curious, because I live in a part of NYC where the homes are generally 100 years old at least and if someone HAD NOT passed away in them, one would be astounded. It just seemed to me that the ongoing "taking care" was the much harder thing. So I asked, and I got my answer.

Hey, we on this forum come from all different parts of the US and the world. We are of differing belief systems and different socioeconomic groups. We learn from each other.

A couple of months ago, someone said that a poster's mother was lying because the mom said she had an appointment for a lab test on Easter Sunday. It my part of the country, many doctor's office and labs are open EVERY Sunday.

So, I apologized to the OP both privately and on the open forum. Yes, my mom is in a NH.

LastOne - I see no need to respond to Babalou as you have. I have ALWAYS lived in "antique" homes. In fact I've never lived ina house that was less than 50 years old (not do I have any desire to). Grew up in a house that was 200+ years old, first house I bought was 100 years old. (Our current home is "only" 60+ years old.) In those days (and now, if one is lucky) people frequently died AT HOME. It's really what most people wish for themselves and their loved ones (it's certainly what we wish for my 92 yo MIL - who now lives with us and has progressive dementia). Both those homes that I lived in of course had people die in them! In my last home (the 100 year old Victorian) I knew of at least 2 people who had died there: the former owner's sister and husband. My MIL's mother died in my MIL's home, of a stroke.

I do not agree that having someone die in one's home devalues it (as long as it's not murder!). BUT you are certainly entitled to have your own beliefs about this. As long as you realize that others are, too.

Dear Lastone, Yes, call Hospice and get set up as soon as possible, or if you are going the Nursing home care route, please for your sake, start your plans for this. My experience with Hospice care was wonderful, and our Mom was bed fast with end stage uterine cancer, and she was in horrible intractable pain. If Hospice care is the route you choose, let them know about your preference that she Not die in your home, they also have Hospice Hospital's in some areas, an she would probably get even better and more attentive care in a Hospice Unit. Our hospice team recognized some very subtle changes in our Mom that we did not see, and recognized that she was Actively Dying. Their recommendations were for her to be transfered from home care after the 6 mo that we had been doing that, to be inpatient, in a beautiful hospice environment where she could get the very best care. They also recognized that we, and I mean all 6 siblings who were very actively involved in her care, were Flat Out Burnt Out! As I said, they were incredible. Now you and your family have been doing this all alone, and I can't even imagine how very difficult it has been for you! You absolutely must get more help Now! Me and all the others recognize that you are scared, overworked, overwhelmed, and burnt out, but your need to be the very best is not helping your situation, and things will change for you once some of your load is lifted. I hope my advice has helped, our Mom passed away after about 9 days in the Hospice Hospital, on Labor Day 11 years ago today. I miss her every day, but I know that she is with our Dad in Heaven. I can tell by your writing, just how much you Love and care for your Mom, and strive for the very best, but you must care for you Now, you've earned it and you deserve it! No one could have cared for her as you have, but she will be alright with aditional outside help, and it's time! Maybe even try for a respite break, Hospice will help you with that too, andvit may be the perfect transition time. Good luck and God bless! Stacey B

Your feelings are so familiar. I lost my dad 3 weeks ago. He had lived with me for the last 3 + years. His dementia took a slide in June and went rapidly downhill. Hospice came in on July 4th. They were very helpful and we were fortunate to find a nursing student to give me a few hours a few days a week. I joined a support group for caregivers and they were lifesavers. I experienced many of your feelings. I wondered if I was doing enough and felt guilty when I got tired. After all, he and my mom had taken care of me for a lot of years. I think these feelings go with the territory. He was at home when he passed away and I had briefly left the room. I knew the time was near because he had not gotten out of bed for a couple of days, would not eat or drink and suddenly became incontinent. I am grateful I had this time with him and wondered constantly how much longer I could do it. I have no real advice but know that your feelings are very real. I was a nervous wreck and hated to leave the room for fear if I went back in, he would be gone. I grieved daily before dad died but still the reality has not set in. Find a way for a little break...it saved me from insanity. Call Hospice!!!

Lastone: Oftentimes elders will predict their own demise by saying such things to you as "it won't be much longer" and "I've lived long enough" none of which one wants to hear from their parent. Though scary to hear, they are usually correct. At least it was for my mother, whom I had to live with out of state IN HER HOUSE FOR AN EXTENDED PERIOD. Don't be afraid.

Check into Hospice Care, you will find the answer to your prayers with them. They will come into your home and will help you with your Mother, and help you with anything you need to learn or know. I am sure if your Mother is on Medicare she qualifies for Hospice care at this time. Be sure to check out several companies as some are better than others. They were a blessing to us as I wanted to care for my husband at home and I could not have done it without them. God Bless Hospice care, they are there for the asking and come for as long as needed, none of us know when our lives will end and Hospice does not expect you to know. God Bless You and Your Mother.

I'm including a little bit of insight to help you out, because at some point you're going to have to prepare yourself for the inevitable.

http://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with-Terminal-Illness/Signs-of-Approaching-Death

Dear LastOne,
I understand your sadness around the loss of your best friend. The next stage.. whatever that brings--is something you can handle.
The best you can do is -- the best you can do---and the best you can do is Enough.
Take care of you, please! Thoughts and prayers for you and your mom.