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They don't know me and they don't know what I have to go through,Everyone here on this board knows, we have to shower our mother or (father in my case )and put med's in places that we would really not like to touch let alone look at. Clean up urine, and poop anywhere and everywhere. Be home bound so that medicare will pay for services,take them to dr's appointments, not be able to go anywhere without finding someone to take care of them for a few hours or having to take them with you that means getting them in and out of the house and a car.
Let alone making different meals because they want to eat later or earlier.
The extra washing of clothes and towels ect...The no time to yourself or with your husband or wife. So I am missing something here what is it that we don't appreciate again. I just want to say to them walk a mile in my shoes then you have the right to tell me to appreciate what I have.

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The truth is, that they will only get it if "They do walk a mile in your shoes!"

But we wouldn't want to wish that upon anyone and so my suggestion is for you to keep doing exactly what you are doing by interacting with care giver support participants and share (via writing) your experiences.

B.Miner FL
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Not proofreading thoroughly, which I usually do, spelling errors due to clumsy fingers, lots to do before tomorrow, in a rush. Thanks to all.
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God bless you. I know exactly how you feel. The truth of the matter is you have to forgive them for their ignorance and let it fall like water off a ducks back. It's like a shoe salesman trying to give you medical advice.
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You can chose your friends, but you can't chose your family. Toss up between putting family in a box and sending them away, or going away ourselves. I am of two minds, Paris or St. Barts...... There have been times I wished I had info the feds wanted and they would send me away in witness porotection, new identity, everything. Alas, not to happen..... You ARE beautiful, don't let anyone tell you differently.
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Thanks for all the input, It sounds like we should put all of our family's in box and send them to inland some where. Here's to all of us that put in all day after day, the good the bad and ugly! Three cheers for us and a bottle wine! So happy that I found this site, I thought I was the only one feeling the way I do, but I see now that I am not. Endofmyrope do love your therapist they really do tell it like it is. Thanks again.
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yellofeever - In spite of the above I simply went on with, for want of a better word right now, 'conventional' behavior, though I have not called everyone, like each individual niece, I called my sister-in-law, I knew she would immediately call everyone she knew (telephone, telegraph, etc. LOL) which would save me the trouble. My behavior has, I think, been civilized to all ("with malice toward none, with charity to all") gone about preparations as fairly and considerately, as some are family and were mom's friends, though I did not know some of them personally. I have mjust considered it as much my responsability as I did when I cared for mom for all this time. It is my duty, I do not shirk duty. Like you, most of them I do not feel like welcoming with open arms either, but I will allow it if it comforts them in some way I do not need. As I am the only one mentioned in the will, there has been no discussion on that, though I have made or tried to make momento gifts when I thought they were appropriate (my nephew in WI, who was the most attentive one, and his wife, made out like champs in everything except money, of which there is not much. So, as I said, just be gracious and do not close any doors, if it is to be so they will close themselves, or stay open as the case may be. I am having a small funeral/Memorial service tomorrow, small because mom outlived nearly everyone in her family, and she was not one to put herself forward or make a specticle, much of my own family is so scattered I told them they are excused if they cannot come. I just expect the few people here in town, a couple neighbors and friends, and a couple of mine, not many as I have not really made that many since I have been back here. I have also elected not to have a graveside, but have arranged with the cemetary that I would be there at enterrment, a wonderful minister will officiate at the memorial, which should be sufficient. Anyone who wishes to accompany me will of course be welcome, but I fees as if it will be my last bit of responsability to her fulfilled.
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I as well have no emotion when it comes to my siblings I used to think my sister walked on water. Well, it came down to taking care of mom for me to have an awakening. I finally seen her, in all her glory. I was hurt, sure. But I accepted it and moved on. Mom was the important issue at hand no time to worry about my sis and bro being worthless.
Neither one has acknowledged mom in 2 years(as well as no contact from their children) Now I am faced with What to do? Mom is still holding on barely. Its down to a hour to hour watch. Part of me feels I should contact them. But I am risking a fight in front of mom. That is the last thing mother needs on her deathbed. Really the other part of me feels they will find out when everyone else does. Mom and I prearranged funeral details sometime ago. If they show up or not it doesn't matter. I can't even imagine the nightmare that lies around the corner. Its all about "what do I get" with them. I swear, that if they show up and stand at the casket and put on a show for others I am going to lose it. This anger is more for mom, not being worth their time than my own emotion, (if that makes sense). I am so protective over mom and they have hurt her emotionally until she forgot about them. I will be damned if they are going to make a mockery of her funeral.
When my father died, my sister made several hundreds of dollars from it. Ones would hand her monetary gifts since she is the eldest child, and she pocketed it instead of giving it to our mother. But mom knew and it devastated her.

Sorry to ramble on.... I have gotten over the shock that it is now moms time and left it in Gods hands. But, I am having feelings that I thought was buried. Anger towards my worthless sibs, each day I can feel it building towards eruption!! At this time, I am not able to open my arms and welcome them in. I know its wrong but hey I am not perfect.
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I do love mine which is whyit has hurt so much. All they have done for years now is criticize my every move, and have been EXTREMELY mean. I will always love them, and I do forgive them. Forgiving is for you, not them.
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Point taken. I do not love them nor hate them. I just don't consider them important in my life anymore, which was not my intention when I moved back here.
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Sounds just like my story. They are all about plastic surgery, hair, nails, makeup and social life. I shouldn't have used the word loathed! I had never felt this way about them but they really screwed me over. I actually ended up in the hospital for 5 days because I allowed myself to become so stressed. My point here was forgiveness. It does no one any good to not forgive. It's just another poor use of time that should be spent happy.
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PS - My neices are not the only ones - I lost a couple so-called friends who simply did not want to hear of my troubles (I call it the FWFA - Fair Weather Friends Anonymous) - like the number from The Wiz - Don't go bringin' me no bad news - they did not even want to hear of it, let alone let me vent. And then there is also the multitude who would get warm and sloppy and gush how "lucky" I was to still have my mother with me - she may be in pain and discomfort and wasting away before my eyes, but am I not LUCKY to WATCH it happen with NO help? They certianly did not want to come around even to visit either. Those are the people with whom I have an issue with, and will have for a long, long time.
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Oh, I never said I Hated them, hate is a useless emotion and contrary to popular though, is Not the opposite of love. Apathy and disinterest is the opposite of love. I have no hate for them, if anything it is a matter of "forgive them for they know not what they do." The 'girls' as I call them are just empty headed non-enteties. they have nothing much on their minds but their hairstyles, makeup, tanning parlor and maybe a couple trips to Branson or Vegas a year. They profess to have 'loved' Grandma but we never saw or even had so much as a telephone call from them from Christmas to Christmas for Years!, and mom did so much for all of them in their youth (this includes my sister-in-law who had no parenting skills at all and wanted to be their friend rather than their mother. Must have worked, they 4 are thick as thieves, but no time for grandma. In fact, from the son of one of them we got a side reference that to their 2nd childs' Christening the little celebration afterwards was only a small one "for the family". So what are we - chopped liver?! Hurt mom badly. When I had my knee replacement I had to beg them to help out a bit, they did for about a week after and when I started to get around better _I rushed it) they fell back into the old pattern. They say "just call if you need anything" to which I think - Why should I have to Call?! One of them, about once a year when we see her always brings on of those meaninless little plaques like you get in the drugstore gift area with a sappy little poem about how much Grandma is loved, thinking that makes it all up. Bah! Humbug! So, if they do not want to consider us not as family members, that is the way I will react. As I said, it may be a long time before I 'forgive' them, the sad part is that they will probably never notice. I had total strangers volunteer more than they did.
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For DT:

"Always forgive your enemies; nothing annoys them so much."

~ Oscar Wilde
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I think DT that it is the family members who are carrying so much rage, and are intent on making us feel unept and rotten because we "slipp[ed" and upset dad or mom with our "selfishness". I literally HATED those two rotten, selfish imposters for 5 years! I felt like they were portraying me as the "bad" one to my dad, and getting away with it!! It absolutely enraged me. They were screwing me under the radar from dads view, and he was buying right into it. I tried to convince my father of what they were doing; how they were ganging up on me right under his nose. HE blamed me too for the "rift"!!! I see a fantastic therapist who has helped me sooooo much through this complicated time of pain and games. He said to me "Why do you care?". I said "Because I don't want dad to think I'm a bad person." He said "Are you a bad person?" I said "Of course not...I would die for my dad." He said "You just gave yourself what you needed to know." He told me to completely ignore every single thing they said and did, including my dad! He said if your father isn't treating you with respect, gratitude and the same love you're giving to him eff him!!! I was totally shocked! I said, but he's my father! He said would you take that treatment from anyone else? Me: No, but he's my dad! Dr.: SO WHAT! He's an adult with a sharp mind, and shame on him. He needs to own his words and actions just as he expects you to. Yes he's old, and yes he's dying but you know this, and you still treat him with respect and kindness. Screw them all! You are the one who's there, and when he goes you will feel proud and strong. They'll all have to deal with the guilt and anger for not being there like you were. IGNORE them, and forgive them. They are pitiful and weak. DT, my anger completely dissipated...poof! Now when they try their crap it's like they don't even exist. Now when dads mean I camly say "Dad, you're being very cruel and disrespectful." If he starts to scream I simply say "Dad, I will not stand here and take your verbal abuse. I am very good to you, and I love you with all my heart, but I do not deserve this." He usually continues to scream, and I quietly calmly say "Dad, I won't argue with you" When you feel you can speak to me civilly, I'll be happy to talk. I love you." I do the same thing with the Broomhildas!!! Drives them nuts, but it keeps me grounded and above their caveman behavior. They are not worth your scorn DT. I'm not saying to seek them out to forgive them...OH NO!!! I'm speaking in your heart forgive so you don't have to own what is theirs to own. You do not deserve to feel bitter. You should feel WONDERFUL and PROUD. From "Streetcar Named Desire" "Stella, DONT---- dont hang back with the brutes". You deserve happiness, leave them behind you and start your new life of freedom and happiness!
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I think it is important to gain as much information as you can about any subject, I have a theory that ALL knowledge is useful at some point or other, but it is just as important to remember that each case is Unique, no one person or no one book has the answer for all people. Just as you can't take a page and turn it into a volume, you can't just read the arbitrary book and turn it into a solution. And I agree with enofmyrope - talking is the best. On another entry, I forget if it was this tread or not, I said most of my depression and my resentment was because I had to, was forced to, bottle it all up, bottle me up, and act as if I were insignificant compaired to the sacrifice of my own life that I was making for my mother. Through it all, I was definately NOT insignificant except in my role as a tool to keep my mother alive. In fact, it is going to take a very, very long time before I forgive quite a number of people including 'family' members who made me feel that was or as if that is the way I was supposed to be satisfied feeling.
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Books, and articles are a means for pedantic people to make $$$$. They don't really know about that which they write about. They just throw down a bunch of psychobabble, and hope people will buy it. There are so many people these days who buy self-help books because they're desperate for answers. Some are good, but many are BS. It's good that site like this print some of these things because it gives everyone an opportunity to share true helpful advice that has come from hard won experience. Provocation brings forth truth! Just look . . . 58 answers . . . 58!!! Obviously this article hit a cord, and also inspired us to to talk about many other more serious topics. In the end, something good came from an idiots words!!!! LOVE TO ALL
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That is all they can think of to say......and jeannegibbs that is so funny. Have a brother-in-law that is an authority on raising the perfect children since he never had any.....haaa. Then there are the do gooders who just roll and over and take the whipping and think everyone else should too. Please.
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I know it's hard to see it this way but it really is a beautiful thing. To me it is very similar to the miracle of birth. It is our birth right to be given the release of death. We are sad because we are the ones who are left behind missing our loved one. However, they have gone to a place of such incredible love, peace and beauty. They would not want us to be sad here. Not letting go, and grieving too long only makes it harder to fully enjoy their new land of peace. Our grieving energy concerns them, and they feel like they must stay longer until we feel okay. Grieving is completely natural and necessary, but death should also be a celebration of the freedom and peace they are now in.
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Yes, mom had the 'rattle' too, I have heard of it referred to the 'death rattle' - the hospice nurse demudrred but I used the word and she agreed. Sorry to be so blunt, but it is what it is. As for the fluids, I have heard anywhere from 3 to 4 days fluid deprivation on a healthy person, hospice nurse said to wet a clean washcloth with cool water and moisten her lips, if she sucks on it it is OK, but I am sorry to say that if this is going on it may be her last hours. Yes, talk to her, it will help both of you.
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Oh sweetie, I am soooooo sorry. If you are hearing a rattle, and she is somewhat comatose it should not be long till she passes. Your moms best friend probably didn't visit because it was too painful for her to see your mom. My mothers own sister did the same thing, and she and my mother were so close. She adored mom so much that it know it would have killed her to see my mother like that. My mother was only 46 when she died, and ironically she died on my 26th birthday. She had breast cancer that spread everywhere. At the end of her life she looked nothing like the gorgeous woman (and my mom looked like a movie star) she had been. My mom didn't want to see any of her friends either because she didn;t want to be seen that way. People behave strangely when someone is sick and dying. You just have to let them deal with it in the only way they can. As far as the ER, we took my mom OUT of the hospital when she was near death. We wanted her to die at home. I slept on the floor of her room the last week of her life. Our last verbal exchange as I sat by her bed holding her hand was "Mom, I love you so much...so so so much", and she said "I love you too Tam". Then she said all excitedly, "You are such a huge vibrant!!!" and I said "What do you mean by a vibrant mom?", thinking she was halucinating!!! She said "There are bright bright beautiful colors swirling all around you!!!!". Then she looked me right in the eyes and very lucidly said "You have brought me such great pleasure my beautiful Tamara." Those were her last words to me. She went into a complete coma, and died the next day; my 26th birthday. She was in and out of confusion that last week, but our exchange was completely lucid. Hold your moms hand, and sit with her. Tell her how much you love her. Believe me, she WILL hear you, and understand what you are saying. She is in between worlds right now. As sad as I was about my mom, there was an extreme beauty and peace about her. Her beautiful face was so serene. My mom was very depressed before she was near the end, but in her final days she was way beyond depression. Ignore your moms friend. She knows not what she says. It is all about you and your mom right now . . . no one else. Just be with her and love her. I haven't told this story to anyone in a very long time, but I thought it might help you somehow. I follow my gut feelings when they are strong, and felt compelled to share this with you. Love is the one and only single that counts in this world . . . just love. IN LOVE and LIGHT
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Well, mom has took a turn for the worst in the last few days. It has been 4 days since any fluid or food. She is starting to "rattle" in her lungs. And has had quite a few seizures in the last couple days. She is quiet either sleeping or awake. She is comatosed in a way. Expression: "the lights are on but no ones home" best descibes mom when awake. I sit and just watch, wandering if she will take another breathe. Thursday was the worst, but she has gotten slightly better and leveled off. we had Christmas last evening for kids just in case. Since we,my husband and I have children from previous relationships , this morning the kids went to the other parents home. We don't want the kids here to see grandma like that. So split family situation is helpful at times.

I am going to post this question in a bit, but in the meantime does anyone know how long a frail 60-70lb woman can go on without food/fluid? I know dehydation has set in by now, because of moms low intake prior to her decline. I just don't want mom to suffer anymore than necessary.

I debated on who to contact and share moms condition with. I decided to call moms "supposed" best friend(who hasn't been her to see mom since spring) I causally called and slowly approached what was going on. Sure enough this woman instead of coming to see mom or accept it. She went into her spill of useless fixalls and information. I was furious, this "friend" of moms had enough nerve to tell me its just depression and she will pull out of it!!! I know this woman has told me that a thousand times before but now I had enough. So I wasn't so nice, I know I insulted her but hey this is the reality: Dementia has now consumed mother and its just a matter of when it will finish her off. I was told that mom should go to ER or to another dr. For what????? Her wishes was no artifical means, and really what will that do but just prolong her suffering. Right now, mom is comfortable and is in her own world. She looks so at peace.
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You can't get the show on demand, but you can see peices of it on youtube. You can also rent or buy the series. DEFINITELY worth it!!! XO
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hooping,

If you don't let them go they will feel obligated to stay for your sake. They need your "permission" to go. There is also a part of me that doesn't want my dad to go, but the other part knows he must. I want him to be rid of his broken painful body, and go the the land of pure light and love. I've posted this berfore, but try to watch the show "I Survived . . . and Beyond". Not "I survived, it must be "I Survived and Beyond. You can probably get it on demand. I think your thoughts of not wanting to lose them will change. Remember, it's about them. We will all miss them terribly, but they have lived full lives, and are ready to go. It is the natural order of things. MUCH LOVE and LIGHT! I will Google the show and post it, K?
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My dad was sick this morning but is better now and I guess I really got a look at how it would be if something happened and I relize I am not ready to let them go. My mother slid out of bed the other night but didn't get hurt. I think this is all a wake up call for me that even this is very hard I am not ready to let go. I am so tired sometimes as the demands are so great. I wonder when it is over who will have the most guilt the caregiver for lossing their patience or the one who did nothing. The one who does nothing can justife that that they live states away and have to work while the weary caregiver losses patience. I love them and am not ready to let them go and I pray for patience as they need me so much and the needs are so great at 24/7 . A Merry Christmas to everyone.
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EarthQuake,
It's a good thing that your mom has embraced the death (I call it the beginning of life). She recognizes that she's lived life, and now can't even do the things that bring her simple joys. I watch the show "I survived . . . Beyond". I recommend to everyone I know to watch it because they interview people who have actually "died", some as long as 1 1/2 hours. Every single one, except the ones that have taken the wrong paths, have claimed they feel love, intense pure love the likes of which they could never have imagined. They all say that they are embraced in such powerful love that they don't want to come back here. They see their loved ones who've passed there waiting for them, and claim they appear to be the most beautiful and luminous versions of themselves looking healthy and glowing. They are so happy with out the cares of this world. That show can take the fear of death out of anyone. The only reason some come back is they have unfinished business here, and it is always young people. The elderly have lived full lives, and their are ready to go to that amazing place. When my time comes I will look forward to my new life! Everyone should Google the show, and read about it. I'm sure it is probably on demand too. Do not confuse it with "I survived". "I survived and Beyond" is the version of those who have actually died. It is an amazing show! Your mom is probably feeling the light, and love radiating from the other side. Be happy for her! As much as I will miss my dad, I know my mom, and his family and friends are waiting there for him with open arms. I no longer fear death because of watching that show. So, anyone reading this post . . . PLEASE watch that show! It will ease all your woes. LOVE TO ALL
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My mother wants to die--she's said that several times. Her friends have died and she can't garden or quilt or sew or read or any of the things that she once enjoyed. She's still able to knit--with effort.
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earthquake - been there. Mom's death is not something anyone wanted, but it was inevitable. Anyone who denyes the enevitable does not deserve to be listened to. Those people who say things like that just do not realize sometimes that to live in agony is no life, if they had to do it they would agree. Mom's death released her and released me from having to watch it happen. When she died it reminded me of some of those old newsreels of the freeing of Achwitz, she was nothing but skin and bones. Would not have wished to remember her that way, but there it is. Perhaps those people are such cowards that they cannot face what we do.
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EArthquake, you couldn't have been more honest. I think we all have that thought but seldom have the courage to voice it. I hope you have a quiet holiday season!
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I hear a lot of this, "You should be grateful for your mother" or "You thankful your mother is still alive my mother died when she was 60." When I was younger and living in a different state I really feared that my mother would die and I'd be alone. Now I am alone because while she's alive there isn't really any friendly relationship. Now I fear that she won't die.
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Do you have medicaid or medicare yourself? Did you know many people who do can actually be paid for their caregiving time through either. Dig, dig, dig Millieannie!

"Past the seeker as he prayed came the crippled and the beggar and the beaten. And seeing them... he cried, "Great God, how is it that a loving creator can see such things and yet do nothing about them?" God said, "I did do something. I made you."

~Author Unknown
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