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Hey all, I hope everyone is hanging onto their sanity.... mine us SURELY slipping away. When I think back to all mom and I have been through it seems like a different world. The anger stage, not wanting to leave the house, the shadowing, the threats, the escape artist, the SUNDOWNING, the marathon 36 hours of non stop pacing, the falling, the non eating of solid foods, the UTI's, the incontinence and and, what have I forgot to mention?...Oh, the repetitive questions over and over and over and over again..... through each and every phase we had to adjust and readjust dialing living and how we got by, this newest change is just frazzling... I have no fingernails left and the cuticles aren't far behind.

Near death for days, so much so her nurse and bathers gave me their private numbers as they didn't think mom would last through the weekend. Inaudible breathing, no food or water for 2 days, no body fluids, BP pressure was so low....half opened glazed eyes. Heck, I was using a tiny syringe to keep her at least somewhat hydrated... my brother staying the night with me so I'm not alone when she passes...

What did I get this morning?.... mom saying she was hungry. She proceeded to down 3 ensures, a cup of applesauce, cup of pudding and a small bit of soup. Has peed like a racehorse all day and very chatty. Don't get me wrong, I'm grateful she didn't pass away but I can't help wonder why the Higher power lets this cruelty continue. Why? So I can suffer the guilt of hurting her every time I have to readjust her position or change her? So she can suffer the pain and indignity of me putting a suppository in her so I can cause more suffering? So she can be frightened at the thought of being moved or I have to feel bad for drugging her up so I can change her without her protesting in pain?

Makes me wonder if trying to keep her hydrated/nourished was the right thing to do. Am I too scared for my own selfish reasons (being all alone) to let her go peacefully?

Sorry for this post... this is what goes through my head most of the time...sucks!

I want to thank you for all your heartfelt messages to me and mom. I try and read most of them to her, letting her know that she is loved by many people, even those who have never met her or me, yet genuinely care.

She is a kind, gentle woman with angelic eyes who most certainly wouldn't want to suffer the atrocities of AD if she was aware of it.

Thoughts and prayers to all of you wonderful carer's.
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Jeanette, it may be that the end is very near. Quite often someone has a last good hour or a last good day -- something called surging. My father surged on his last day of life and ate a big meal and relished his Ensure. After he finished eating, he started to die. I don't know what is in the future for your mother, but don't be surprised if she crosses to her life beyond soon. Surging can raise false hope that someone is getting better or concerns that the suffering will never end. I don't know, but it may be what you are seeing with your mother. If it is, be glad that she was able to enjoy some of the good things here on earth before it is time for her to leave. You're in my thoughts tonight.
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Freqflyer..dont know if this will help but you could try inserting one of those clorox tablets into their toliet bowl or spritz the bowl with pooporri to keep things smelling better despite not flushing.
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Hi everyone. Well my dear Mom is still hanging on. The end of life doctor has taken over and she is now on full comfort care. They stopped fluid I.V.'s and she is getting suctioned regularly and of course morphine.

I spent 6 hrs. with her today. Would of liked some time alone with her but my sister has decided to camp out by my Mom's bed.(fair enough) But I find it funny that someone who wasn't there much during my mom's life is now the doting daughter at my mom's deathbed. Didn't have the courtesy to leave for even half hour to let me have some time.

Sorry if I sound b*tchy and bitter. I know that it sounds bad but ........well anyway.
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I am sorry dear Gershun, you know I am right beside you with my dear mother. Keep doing your best and God Bless you and your mother as you transgress once again in this journey.

As far as your sister.... I agree, well anyway.
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Gershun, the bed has two sides, so there's room for two daughters. I know you want to be with her, too.
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Jeanette, your post is really spooky. I am going thru the identical thing right now. Mom fell a couple of weeks age, hit her head and slept as if in a coma since then, not eating, no liquids except what I could get into her with a syringe and most of that ended up rolling down her chin. Hospice has stepped in and been a world of help, even giving me five days of respite care (all payed by Medicare, yes! Medicare) They say she probably won't last a month, this after a year of going thru everything you described, each and every thing. Today she said "hungry" and ate some pudding and drank some tea, peed in 3 diapers and has been trying to climb out of bed for hours (it is after 2 am here.....) I feel so bad because I am so disappointed, I thought she would finally be free (me too, but that is just between us gurls) The nurse said it could be surging, and all I can think is How long will this go on? All I can say to any one reading that has one nearing the end, see if your county has hospice care, You won't be sorry, once they are on the program, they provide free of charge a hospital bed and all the necessary equipment for you to use, all the drugs (and they don't mess around, you get the good stuff) bathing care, a nurse and best of all they don't push you to keep trying to keep them alive. When they get accepted for hospice, the goal is to keep them comfortable, but let nature takes it's course. But, it sure isn't doing it very fast, my mother only speaks a few words and then lots of nonsense ones, she can't sit up, all she can do is lay in the bed and struggle with her covers until she wears herself out and finally goes to sleep.
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Jeanette, your post is really spooky. I am going thru the identical thing right now. Mom fell a couple of weeks age, hit her head and slept as if in a coma since then, not eating, no liquids except what I could get into her with a syringe and most of that ended up rolling down her chin. Hospice has stepped in and been a world of help, even giving me five days of respite care (all payed by Medicare, yes! Medicare) They say she probably won't last a month, this after a year of going thru everything you described, each and every thing. Today she said "hungry" and ate some pudding and drank some tea, peed in 3 diapers and has been trying to climb out of bed for hours (it is after 2 am here.....) I feel so bad because I am so disappointed, I thought she would finally be free (me too, but that is just between us gurls) The nurse said it could be surging, and all I can think is How long will this go on? All I can say to any one reading that has one nearing the end, see if your county has hospice care, You won't be sorry, once they are on the program, they provide free of charge a hospital bed and all the necessary equipment for you to use, all the drugs (and they don't mess around, you get the good stuff) bathing care, a nurse and best of all they don't push you to keep trying to keep them alive. When they get accepted for hospice, the goal is to keep them comfortable, but let nature takes it's course. But, it sure isn't doing it very fast, my mother only speaks a few words and then lots of nonsense ones, she can't sit up, all she can do is lay in the bed and struggle with her covers until she wears herself out and finally goes to sleep.
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End/Jeanette/Gershun you are all struggling right now and I dont envy you this time at all. If it is any consolation and it probably isn't my Dad surged and it seemed as though he need to have one last try to beat the big C. When he knew it wasn't going to happen then he let the good Lord take over and Im not a relligious person as you all probably guessed but I swear he joined the nagels that night.

My Mum on the other hand has had the family called in twice and has not just surged but rallied to the point we are taking her on holiday next week.

I have no clue who wrote our life plans - all I do know is that they did an absolutely crap job of it
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my mom stopped eating food about 3 days before death . she stopped accepting water a few hours later . i didnt try to force either because id read that starvation and dehydration were a natural and trauma free way of letting go . something happened that caused mom to realize the end of life because she wryly asked me " how am i going to get out of this one ? "
i believe her digestive system ground to a halt and she felt it happen . i once offered her an ice cube and she accepted it .
the hospice nurse said we were right to not push food or water on her . ive seen that compared to watering a dying house plant in end of life literature .
when in a few hours mom developed terminal restlessness it was time to knock her out with liquids ativan and morphine . we were instructed to keep her knocked out regardless of how much morphine was required because her body was actively dying . mom had a multi decade hydrocone dependancy and kinda liked opiates . i suppose in her final hours she was jellin like a felon but ill probably always believe she could recieve auditory input .
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Jeanette and Endof rope. I was going to write exactly what Jessie said. This last day allows our loved ones one last look at the world and their loved ones and then pass peacefully usually within a couple of days. As Jude said not always a guantee but that is how it usually works. The husband of a dear friend passed at 5am yesterday. the nurses said he would not last the night on Sat but I told her it would not be on a Sunday because he was not a believer and had some bad history. his family is RC and the funeral home that usually cares for the catholic famillies picked him up but he is being cremated with no visitation or funeral just a memorial during the summer. He was only 55. Prayers to al, this is the hardest time.l
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I have not been here in a while and now reading as many of your comments as I can my heart just goes out to each and every one of you....I know it's coming to me too I just don't know when...Mama has had some improvement over the last few weeks and so now she is mostly just lying there, talks sometimes, even laughs and seems to be comfortable and resting well. No one can explain it. I have let her go so many times, we have talked so many times and I have prepared myself so many times to the point of already having my clothes her clothes etc. all prepared and now she is "back"....I am very happy about that ....it is just that all of this is so confusing sometimes to me. After going through the winter and almost losing her so many times...I have also heard, as Captain mentioned, not to force food or fluids and I have never done that...I have told her so many times that she knows we love her and it is ok to let go, we know she is tired...I don't know...I am in a holding pattern now...I know God will take her when it is His time...and not until...

I don't even have the words to say to any of you in so much uncertainly, waiting and pain right now...My heart and prayers go out to all of you....I have had a lot of really bad and difficult things in my life, but I know none of them are as difficult as this is...or as lonely as it seems sometimes...and yet at the same time, I am thankful to be here...while I have been given this extra time I am making the most of it and my brother is as well. I reach a point sometimes where I don't even know how to pray anymore...and so I just repeatedly ask God to please don't leave us....and I know He won't....thinking of you all......
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I stay pretty fatigued due to several different health issues and even just typing here exhausts me. I might not post much, but I do read posts and pray for all my friends here. I just want you all to know, I would never had made it without your help and kindness. Moms doing well in NH and might even have a few years left. I am diligent with my own health now and am so happy I lived to see my new grand son. A month from today I will be heading to Indiana to see all my sweet babies. Remember, even if you don't see me, I'm still here. Love and Prayers to all of you.
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@Gershen - re your long lost sister's being there for your mother's final hours, you just have to let that go because it will eat at you and make you miserable.

My mother is in the hospital after one ER trip a month ago for falling, during which she severely banged her head. The last three ER trips came this past weekend, two of which resulted in her being sent back to the NH. The first was the resulted of a nasty fall (her eye is black, her forehead has some sort of blister type bruise) the second of the three was because she was acting out. The third, was yesterday, at which time she was speaking inappropriately. I believe one of those hits has changed her dementia 'timeline' if you will. The NH says one thing, hospital indicates another.

A neighbor's MIL just went through what you're going through now. About a week into it, the MIL took a breath and it stopped.

All our thoughts are with you. While I'm less stressed since I decided in the NH route, I have to tell you there are times when you just wonder what the heck is going on with the health care system in this country? One hand doesn't know what the other is doing. HIPPA laws and patient rights laws are over the top.

It's exasperating.
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I agree, letting it go and moving on is the best course of action for your own sanity, but wow, it is so hard to do. I have finally had to do just that, let a LOT of stuff go and move on....I can't deny it still creeps in now and then and when it does it makes me sick...

My SIL does not come to see my Mama...hasn't been here in over three years now, even though she passes within two blocks of our home on a weekly basis on her way to their lakefront estate (that used to be half mine) But on the few times that Mama was in the hospital over the course of the last few years, the minute she knew I had gone home to change clothes, here she came, making a big show of herself and then once she knew I was headed back she was gone....and yet no one even seems to notice that behavior...I have to say I will never understand very much of what all has gone on over the course of the past few years, but finally did realize the only way I was going to survive was to do my best to let it go and just try to be happy in my own mind, knowing I have been the one who has been here...and God knows it too...
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My whine - Mother's Day in 5 days. Why should picking out a card be so difficult?
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I am finding this too...that I need to compartmentalize things for my own sanity and well being. Things have been so tumultous with many hospital stays, and 2 bad nursing homes last summer for rehab, more hospitals, a long stay at home and another hospital and now a finally a good nursing home for rehab, that I found myself taking notes, writing things down and names etc. then filing them into folders to deal with later at times if necessary. Some of the people that have angered me I have decided to just dismiss as fools, and get on with my life. look at it this way...I am now done with these fools but they have to live with themselves each day...I don't! If I were to look at all the turmoil and strife of the last year I would go crazy...better to compartmentalize and let go what and who does not help me with what I need to do each day.
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Linda22, I know what you mean. I will find a card that have a beautiful front but the wording inside is all wrong..... or way too wordy.... or printed in such a light color that even I have issues with reading it, can't imagine someone who is almost blind trying to read it.
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My relationship with my mom is complicated so Mother's Day is too.
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This afternoon my Dad [93] called wanted me to come over to help change a light bulb.... sure, what light is that?.... it is the light hanging down from a cathedral ceiling in the dining room.... Dad, I've told you many times before I [68] no longer do tall ladders plus looking up makes me very light headed... my sig other also has the same problem.....

Dad grumbled that he would need to call their electrician and that would probably cost him $100.00. I had to bite my tongue because it sounded like Dad didn't care if I fell backwards off that ladder loosing my balance from dizziness as he would have saved $100 [or whatever the cost].

Heck, I had called the same electrician a few months ago to help me change the batteries in the ceiling smoke detectors.... no way was I climbing up a ladder to do that. Now, 10 years ago I could have.
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Cards are difficult
I tend to buy blankish ones that just say Happy whatever then write my own verse in them. Not always what I want to write but then I dont think she'd appreciate my sense of humour....
Ive cleaned up mess 7 times today
Dont you think Im tired of it
All you do is moan and whine
And of course you sh...
Ould be resting up today
you had such a restless night
You rang that bell 5 times to talk
And all you talked was sh......
all we go somewhere nice today
To the galleries to look at art
Or perhaps a walk through the park nearby
But mother please dont f....
eel you need to decide
What you want to do today
Because despite my moans and groans
I wish you Happy Mothers Day
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Jude..you might ought to market that one for caregivers ... :)

I happened to be at wallyworld today and so thought, hey, I'll go ahead and get my Mother's Day card...and it is hard to find one now that says what I want so I tend to find one that is pretty, has some sweet short message and then I write my own verbage....Mama doesn't really read a card now, it is heartbreaking going through it actually, as is any holiday, but I am still thankful to have her here with me...I am exhausted for some reason today...a lot of pooing all over the place for some reason...most of the time I am able to handle that without a hitch..for some reason it just feels more exhausting than others...

Katie, the thing about dismissing the folks who have angered me as fools...that would mean dismissing pretty much every single person who comes here now...lol.... but what has actually dawned on me, when the sad day arrives that Mama decides to leave me, I am going to be completely alone because even though I have huge extended families on both sides, not one person has been here for Mama or for me, so I am done with all of them...how sad....but that's ok...I have come to terms with it...
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The one thing and maybe the only thing I can say with certainty...I do believe that the only thing that will enable me to move on and accept losing Mama is that I know with absolute certainty I have been here through it all and honestly don't think I could have done more, so I will be able to live with myself....I don't know how any of them will.
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One Mother's Day card that my Mom really liked was one of those really huge cards, the height of a small child. It didn't really matter about the verse, it was just so really big. She brings that card out every year to have on one of the tables :)
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I know how you feel! My mom gets three meals and snacks a day. Good thing she is pretty simple. I do cook dinner at night but sometimes she gets a frozen Smart One for lunch and has the same thing for breakfast. I have been gone for two weeks just got back from Hawaii! I did not want to return!!!!! I talked with a nurse today to reinstate my mom in hospice at home and she was so worried about me. She said get as much respite as you can this is hard!!! Duh!!! The more I leave the more I do not want to return so i don't know if respite is good or not! I feel like an awful daughter and that I am not doing a good job because of the way I feel. I lose my patience, I raise my voice at her when she does not listen and does things that don't make sense like trying to move the coffee table!!! The nurse said all of your feelings are normal. Take the respite that Hospice offers five days a month even though mom does not want to go there. I don't know if I can do that or not but I will try. She said if you don't take care of yourself you cannot take care of mom! I try and get out and go workout five days a week and I have weekends and nights off. So I would say I am getting a lot of time to myself and I still don't want to do this but I have decided I will do this until I cannot anymore which means if my mom become incapacitated like I cannot get her out of bed and I have to change her diapers.
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Hope, it seems that I won't have a whole lot of people that won't fall into the "dismissed fools category" too. A lot of these are health providers and nursing home personnel that I have encountered on this caregiving journey , but some are family and friends too. I keep telling myself that no matter what happens...in the end I will still have me, and I can be proud of the fact I did all this. Caregiving is the hardest thing I have ever done in my life. It makes other people's problems often seem so petty and not really problems at all....
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For mothers day and birthdays I usually get the most bright and flowery card they have. Mom just likes the bright flowers and doesn't care too much about the verse...just that we sign it. Some cards play music, but that might not work for some people...
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The only time I like those music playing cards is if I know it will play music when I open it, warn me first... otherwise it startles me to no end, then I can't enjoy it :(
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FF dad was the same way! first time we sent him a musical card Mom said he almost feel out of his chair.. but then he loved it!
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old man burley is back tonight and talking like he might not go back to VA at all . he has family here to stay with but he dont want to live in the city with them . after listening to about 3 hours of his superstitious malarkey i think he needs to move on from here . im not a big fan of extended education but this guy has the whopping credentials of 4 yrs of grade school and im sure id strangle him in a week if he hung around here . this is all rather surreal . hes been effectively evicted along with his brain dead daughter but he just likes it here . i like the old guy but i dont need an elder care gig for a non family member . his daughters are brain dead for a reason . ( brain dead parenting is where it begins ) . my unshakable belief .
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