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This was a good day to listen to the self-doubt check and wisdom expressed by my new friends here. I, too, was brought up to keep a stiff upper lip. It's taken me a long time, but I know better now, although I still see myself falling prey to it every once in a while and chastise myself for sitting on the pity pot.
Christina, I had the same kind of early relationship with my mom. She wasn't mean, but her relationship with alcohol took precedence over me. Only with the help of a good counselor was I able to grieve for what I think of as my lost childhood and forgive, knowing she--they, Dad too--did the best they could. Life dealt a cruel blow in that, after all those years, my mom and I started to connect on a Christmas Eve, and a stroke took her away two weeks later before we could benefit from the newly forged relationship. Although it was a few decades ago, I still haven't made the last stage of grieving with the relationship that could have been. I've always struggled with acceptance when it comes to things I feel cheated of. I feel cheated of a childhood, cheated of my married-kids-white picket fence era, now my golden years, since my husband and I didn't get together until our late 50's, and his mind started it's downhill slide soon after. Whoa. Talk about pity pot. I'd better flush and get on with things. Just in time--the Comcast tech is here to fix the DVR.
Kuli, you keep talking about those feelings here, get it all out when you need to. Your feelings are your wound and it hurts deeply. Going through the pain of grieving is so hard and I admire you for your willingness to "feel" it because the only way to get through something is not by going around it but directly through it. I promise you that you will get to the other side of this deep grief and when you do you won't lose more of your father but you will hold him and the memories alive in your heart like a cocoon. Later it will give birth to empathy and understanding others who much go through grieving. God bless you Kuli.
I totally agree with Rossella. It seems like the way most of us were brought up to believe is to always look at "what is wrong" in every situation. Instead of doing this, how about we change our belief. When we were taught to think this way we were children and our whole belief system was based mostly on what our parent taught us and they in turn were taught from their parents and so on. We are no longer children but adults and as adults we have the right to believe what we want, what serves us. What prompted me personally to change this belief is that I concluded that if we are always looking for what is or was wrong in something, then we are going to limit our perceptions and only see the wrong. What this way of thinking does is it makes us critical and judgmental. It leaves us feeling defeated because along with this comes blame. It tares us down instead of helping us recognize we did the best we could. I say let us look at the big picture and an SEE what is RIGHT in the situation. Like, yes we made mistakes, maybe we weren't the best at communication or understanding, or maybe we bitched or grumbled but honestly we did the best we could. We need to pat ourselves on the back for what we DID do. By looking for and focusing on the "Right" we did we are comforted when our loved one isn't who they always were or if they have passed on. Instead of looking outside ourselves for understanding and praise we need to first show understanding and praise to ourselves. We really need to keep our focus on the belief that we look to what was or is Right with the way we do or have done things. It's not the details that matter most but the big picture. Everyone of us has our weakness and our strengths and it's great that we have this site because caregiving is like being on a giant seesaw and here we can sit on it with others and balance things out. Letting go of the past allows you to fully embrace life today and for anyone of us who has already lost a loved one if we are honest with ourselves we know the right and loving thing to do is to let go of any blame or anger and or guilt because by holding on to that we are stuck in that old wrong belief of seeing the wrong. Lets resolve to change the way we choose to see, and start looking at everything with the perspective of what is good, right, and true. We simple have to look inside our hearts and we know this.
You're right, Rosella, none of us have anything to feel guilty about. Intellectually I know that but emotionally I can't help these thoughts. I know I gave my dad excellent care, I know he appreciated all that I did for him, I know I gave him years he probably wouldn't have had without the care I provided, I know he trusted me and my decisions. I also know I lost patience with him, especially in his last few weeks out of sheer physical exhaustion, I know I missed the chance to experience the dying process from his point of view because I was looking for cures instead of accepting what was really happening, I feel like in those ways I let him down. Crazy, yes. But very real. Hospice had given me a book about dying when he was admitted in June. With all that was going on with my daughter's wedding later in June, I put the book away and still haven't found it. Denial? Probably. I know at least part of the reason I wanted to put it away was so dad wouldn't see it and think I had given up on him and was now planning for his death. Of course, sibs are back to their old lives. They don't still live in the place we grew up with dad, the place I cared for dad, the place dad died, the place my dad became not only my dad but my best friend. But this, as I'm told, is the process called grief and it hurts like hell! Thanks for all the kind thoughts and words. We really are one special group here on GO. Hugs ~ Kuli
Good Day Friends, Carolyn, I am confined upstairs, but I can leave if I want to. I keep telling the drywall guy who is cutting through the stucco outside,"Remember the gas line", as if it were the Alamo. Very dusty, very noisy, but, we must do this work, as 3 slab leaks in 5 years is demoralizing and unhealthy if mold forms. I understand about parents and unhealthy relationships, about projected guilt and neglectful siblings. Every one does the best they can, or feels like doing at any given moment. When I have made that statement about my Mother--accepting that she did the best she knew how--I really do not believe it. I still believe that she knew better, but that she was self-concerned, nervous, and was mentally ill or had some other malady that made her a poor choice to be a Mother. I say that inspired by memories from my moment of awareness--which was very young--to the moment I became responsible for her. So many memories of her weird priorities, her neglect, or seemingly uncaring, unmotherly ways. Those of you who had nice childhoods, or loved your Mothers, who received love and/or were financially supported by your Fathers, have siblings who you have happy childhood memories of, etc.: Good for you. Some of you did not. Life within a family should be equitable on some level. One cannot undo a parents mistakes, or control their sibling's behavior with threats, or interfere with God's plan for someone's life. I have thought, if it were not for me, seeing to my Mother's care the last 3 years, and it was up to my sister, visiting her a few times a year in a care home, I doubt our Mother would be alive today. Realistically, would that be a BAD THING? Is she getting anything out of life? I try to "help" her get something out of life every day, but what the hell am I doing it for? If I act like my brother, Mother would be gone from a broken heart, if I act like my sister, she puts up a shallow front for as long as she can generate that behavior. I think she's past it. Reality is that each of us is/was the caregiver, we have our unique family dynamics that cause the situations we are dealing with. Guilt? I have NO GUILT, even about getting upset with my Mother when she was here. I have made up for it a million times. Move on. My life is MY LIFE. Her life is her life, and I am NOT going to live it FOR her. What is that all about? Meaning, I realized at some point last year that I was giving up my health, my freedom, my entire house transformed into "Christina's Care Home for the Queen Mother". Why? Because I am a more compassionate, generous person than my Mother was, than my sister or brother are? Or because I am a chump, I am still trying to EARN the love of my Mother? Some in my family have cruelly said that. I'll tell you this: when my Mother is gone, I doubt I will feel guilty. Will I miss the time I take out of each day to visit her, take her out for walks, see her enjoyment from eating a piece of See's candy, sing with her? I think perhaps I get more out of it than she does, but I DO IT for her, Not for me. My sister visits a couple of times a month for HER, so that when Mother passes, she can say,"I drove through windstorms once a month, half a year to see my poor Mother". Bull shit, pain in the ass. I value life from the spiritual instant of conception, to the spiritual instant of the soul leaving the body. If a person is alive, they are meant to be here, whether it is convenient or not. I also have learned to value my own life, the good family life I have worked so very hard to create for myself. I have given my Mother more consideration, more of my time, more concern for her medical and emotional needs in the last 3 years, than she ever gave me my entire life. No, I do not feel guilty. Unfortunately, I don't think my sister or brother feel guilty, either, or they would "do something", wouldn't they? Those of us with a HUGE conscious are going to think this way; the others don't.
Re: Sense of guilt. Who should have sense of guilt? Us, who sacrifice our life to our relatives who need us, even if sometimes we make mistakes or we give them 90% instead of 100% of attention and care, or our siblings who don't want to spend with them one whole day or one whole night? Really, I am sure when my mother will not be with me anymore I will feel the same sense of guilt thinking that I have done something wrong, that sometimes I have not been patient enough... But this is not right.
Yes it was amazing that Winnie's family were not all crowded around her this week when she was able to ask them questions and was not ready to die-I would not put it past her to make believe she was out of it at times to hear what they are saying-my husband did-he wanted to punish me so he would not respond except once when he was getting liguid nutrition I said oh it's time for lunch and he woke up for a second. SS maybe your Mom is only telling them what she wants to-my Mom is pitting us against each other by some things that she says to one or the other of us 4-I found out what she thinks of me by what my sister told me Mom has said about me. You are doing all you can and more than most -your sibs do not care enough to ask you what they can do or even to thank you for all you are doing-I would use your parents money if you have access to it for their care as long as you write down what you use it for the sibs can't say anything-if they have no assests or you can not get to it call social service and tell them what you are up against-a good social worker will get in contact with all the adult children to make sure they are cared for-you know sooner or later they will be there looking for any money they think are due them. You have good friends here who care about you.
It's not selfish to cry for yourself, not at all. You've done so much and it's gone beyond what you can do. When we lose self care and self love to give ourselves self care then we need to listen to what our hearts are telling us (yes we should have a heart for ourselves) when we've done to much and crossed that line. Your first responsibility is to yourself and we were taught as children that it was selfish to think that way but we were taught wrong. When our mind and body are telling us to stop because we are not just tired but to tired, in pain physically and emotionally, just wiped, it is our very "soul" speaking to us. If we ignore it we are killing ourselves.
Being a Martyr helps no one. I see to many people Martyring themselves under the name tag of doing the right thing. That is a self deception that damages us on so many levels. It's the right thing to do to recognize our limitations and get help, it doesn't mean we've failed but just the opposite "we did all we could until we could do no more without harming ourselves" That is real Bravery.
Good Morning all! I'm confined to the second floor today - my contractor and his crew are working on the first floor at long last. The kitchen is being reconfigured to allow easier access to the frig and the gas fireplace is being replaced and re-tiled. I do feel like a prisoner up here. lol
I'll have to keep this short as I pulled my back out Saturday and it really hurts to sit here. But I wanted to check in to see how everyone is doing.
Christina, you are so kind to everyone here. You touch my heart every day. Diane, I'm so proud of you. It's hard to break out of our molds to take care of ourselves by reaching to others for help, especially when they don't give it freely. I haven't written much lately, but I've been reading so I know what you have been dealing with. It's wonderful that James was able to drive to church!
Welcome Sheila. Kuli, Cricket, cuz, SS, Liliput, Linda, Austin, and everyone I didn't mention - Hi and hugs to all of you.
I have to get off my back for a while - I'll try to check in later. Bee
Dad fell before Christmas, was in the hospital, in ICU, out of ICU now in a short-term rehab place that also has long term care. He can't walk or take care of himself personally. I don't think he is coming home. I'm exhausted, can't sleep and cry all the time. But I'm crying for me. How selfish does THAT sound? Crazy.....we should have a better idea in two weeks. Have legal issues to deal with. My siblings know nothing of what is going on except what my mother tells them. I don't hear from either one, ever. In the mean time, I have to deal with all of her OCDs, hawking up flem, matching purses, hoarding bags, (she'll rip your arm off if you take a bag from the house!!), and now have scheduled another hip surgery for her next month. I can't do this anymore.....I'm just wiped.
Kuli: so well said…your words are poetic and moved me deeply…so sorry for your sadness and sense of loss.
You wrote, “…I couldn't have stopped the dying process no matter what I had done.” Under all the stress of caregiving, I think we forget that. I just spoke with my friend last night who cared for his Gma for many years. He still lives with the “coulda, shoulda, woulda” doubts. She was 95 when she passed…I assured him that her life was extended due to his care, so when it was her “time” it was out of his hands.
You wrote, “The caregiving doesn't end when they pass, it only ends when you come to acceptance of their passing.” When you work with and live around someone in such intimate conditions, it takes a long time to fill that void. Others will grieve your father’s passing too, but not in the way a family caregiver will. The void comes from personal loss and from losing an honorable “job.” So, it is doubly hard to fill in that space.
Prayers, good wishes, and love to all who care for a loved one in any way we see best. It really is something only other caregivers can relate to.
195Austin: Good news about your friend. I hope family is still visiting her.
My friend Winnie has ralayed some-I almost did not go to see her yeaterday because I thought her family might be there even thought they seem to have been too busy the last 15 yrs-but she was alone and actually talked to me some-I did not think she would be able to anymore so that was a nice surprise.
Kuli, thank you for the information about "terminal agitation". I don't think mom is in the final stages so I'm going to guess it is agitation caused by the dementia. She has an appointment with the Geriatric Psychiatrist on the 17th so I will discuss it with her.
Well the PCA was here lastnight and wouldn't you know it I couldn't rest because my back and legs hurt so bad! Murphy's Law! Oy vey! I have another one coming tonight and I'v taken an anti inflammatory and plan to sleep well tonight. It was definitely a relief to be "off duty" even if I didn't sleep. James and I went to church today. It was the first time he had driven since having his heart attack. It was a good mental booster for him.
Linda, my heart says keep mom at home as long as I possibly can and do like Lilli said "tell my family this is what I need". Would you believe tonight bro was out to dinner when I needed to get mom off the floor. She didn't fall but rather slid out her chair as I was trying to get her on her feet. Thank God the strong young guy next door was home and got mom off the floor in seconds.
Kuli, when my father died over 20 years ago he had not been ill long and really didn't require caregiving. However, I was the only one home when his tumor ate through his pulmonary artery and he drowned in his own blood. It took me over a year to stop blaming myself for not acting sooner, not knowing what to do, did I cause his death, etc. Emotionally some how I felt I caused his death. I know the situations are different, but I do understand the second guessing. Time and counseling will help you. Please stay with us and share your grief. It's a heavy burden to carry by yourself. We will each face this loss soon or have experienced it recently. We are more than pissanapplesauce! We love you and all the others that have lost their loved ones.
Well crew, let me see if I can get mom in her nightie before the pca for tonight shows up. The old girl is too curious to fall asleep before she meets the pca :) Have as good a night possible and I'll chat with you tomorrow.
Kuli ~ "...but I had convinced myself I was ready for him to pass, prayed for him to pass in peace. " Meanwhile ~ "I don't know why something that is inevitable, and impossible to change, is so hard to except? "
No matter how much we buck up for the inevitable, no matter how much we think we've prepared, we are never really ready when faced with the reality of nevermore. Final. It's just too much for us to wrap our heads around. Eventually I think we just get used to it. Used to the pain and emptiness. And, no matter how much we've done for the loved one, there's always something that we regret and desperately want a chance to make it right, and that chance will never come. All our lives, we've experienced time moving forward. Time stopping is an unimaginable shock.
This is a day I spent to clean the house so it's quite uneventful...Dorothy is well and she seems happy.... My mother is as strong as a rock... Normal day in Normalville. Good night everybody!
Ahh, Kuli, wish I knew what to say. Since my husband died, everyone asks "are you doing alright?". What a stupid question, and I grit my teeth and say "fine". I don't tell people I can't sleep, I spent most of Christmas day splitting firewood, because I am so angry. I have a widowed aunt, who wrote and told me she still misses her husband. He died 20 years ago. I don't know why something that is inevitable, and impossible to change, is so hard to except? Diane, please don't feel guilty. you have done the best you can. That is all any of us can do.
good evening you folks . diane - do what ur heart tells you . dont listen to anyone but ur heart . i agree with cricket amen to that . i have done the right thing havin dad here , he doesnt belong anywhere eles but here with his baby girl . ifhe was somewhere eles i be worried about him . like kuli said , she couldnt rest at home without her dad . i would have someone come in ur home and stay how ever long u want them to stay and come back again tmr . till u get ur feet on the solid ground again , u know u can always ck mom out when ure thinkin of her and go back to bed and knowing she is ok . right or wrong like cricket said , do what ur heart tells u .
we re doing ok here , same old stuff . rossella - no more bandit #2 , uh . sure can not have a dog that likes to kill cats , nananana . lucky my bandit #1 likes to sniff the hellout of my cat , well one time ge grab her tail and flung her around . beat his ass for doing that . he does it again but i d say ohhh bandit then he come arunnin and hugs me . i love that dog ! hes my boy .... ur new dorthy looks so happy with you . big hugs to u rossella ! u gave her a home with open arms , i love u rossella .....
i ve been wanting to go to chattin line but havent went there for a long while , i cant sit at this puter too long , am always up and down and zoom or zleeping , mm like right now i need to throw laundry in the washer and fold the bed sheets thats in the dryer , guess i did laundry on new years day and now i have this bad luck that laundry just never ends here lol , christina ! take that spell off of me waaaaaaa . hee heee . miss you all and i hope that who doesnt come here much anymore is havin a good evening and all is well with em all . thought of deefer today and said a prayer for her . love you all xoxoxox
Thanks cricket. Yes whatever decisions we make, we always need to remember that we are doing the best we can, the best we know how. I still find myself questioning if I had done things differently, would dad still be here with me. The grief counselor I met with last week said I couldn't have stopped the dying process no matter what I had done. So the questions, the doubt, the uncertainty we have making decisions as caregivers during our loved ones lives, unfortunately do not end when they pass. While I know in my heart I did all I could for my dad with my focus on comfort above all, I still question every decision I made. I know I've not been posting but I do read all the posts here and keep all of you in my prayers. The relief everyone said I would feel with dad's passing has proved not to be relief as much as a hole in my life, a wish for a few more hours with him, a deep, deep grief that seems to only get worse as time has passed. Others tell me it's only been a few months so it's to be expected, but I had convinced myself I was ready for him to pass, prayed for him to pass in peace. The caregiving doesn't end when they pass, it only ends when you come to acceptance of their passing. I told the grief counselor that I wish I could see things from other's perspective right now - I can't even begin to tell you how many have told me they respect my courage, my ability to stay the course, my goal to keep his wishes in mind to make the right decisions. I only wish I could internalize those opinions right now. I can't tell you enough to cherish each moment you have right now with the one to which you provide care because you will always wish for more once they are gone. Love and hugs to all ~ Kuli
Diane and anyone else here..just remember that whatever decisions you decide to make you will find understanding and support here among us. Decisions right or wrong, we all just do the best we know how and in the end hopefully everything will work out for the best. Chirp!
Diane - there's a term - "terminal agitation" - that I didn't learn about until a few days before my dad passed. I looked for every reason why his mental status seemed to deteriorate even more quickly than his physical status. We tried all kinds of meds to help what we thought was sundowning. Turns out it probably was terminal agitation and no amount of meds will help that. It does wear you out to the point that I now feel like I missed the chance to have some very important conversations with dad because I was so physically and mentally exhausted that all I could think about was sleep. If it is terminal agitation with your mom, hospice may be able to help by providing overnite nursing care so you can rest. They did that for dad but I still didn't really rest. Thinking of you ~ Kuli
Gee, it's quiet here. It must be as gorgeous everywhere as it is here today. I am taking a break on the bridle trail at 11:45 to check here. Good advice from the very brilliant minds of newbie Sheila and the sage Lilliput. Sorry I do not have any practical advice, I just know when something must be done to survive, but I only know what I must do for myself. We are all different, with unique details. Just want to say good luck, Diane, and I'll be praying for God's grace to pave the way for an easier transition. I'm starting school this week and doing construction, so maybe check in later this week. Blessings Everyone. love, Christina xo
ZEN TEACHINGS 1. Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me for the path is narrow. In fact, just leave me alone.
2. Sex is like air. It's not that important unless you aren't getting any.
3. No one is listening until you fart.
4. Always remember you're unique. Just like everyone else.
5. Never test the depth of the water with both feet.
6.. If you think nobody cares whether you're alive or dead, try missing a couple of payments.
7. Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes.
8. If at first you don't succeed, skydiving is not for you.
9. Give a man a fish and he will eat for a day. Teach him how to fish, and he will sit in a boat and drink beer all day.
10. If you lend someone $20 and never see that person again, it was probably well worth it.
11. If you tell the truth, you don't have to remember anything.
12. Some days you are the dog, some days you are the tree.
13. Don't worry, it only seems kinky the first time.
14. Good judgment comes from bad experience ... and most of that comes from bad judgment.
15. A closed mouth gathers no foot.
16. There are two excellent theories for arguing with women. Neither one works.
17. Generally speaking, you aren't learning much when your lips are moving.
18. Experience is something you don't get until just after you need it.
19. We are born naked, wet and hungry, and get slapped on our ass... then things just keep getting worse.
20. Never, under any circumstances, take a sleeping pill and a laxative on the same night.
Have you ever wondered who first uttered the phrase
"You Gotta Be Shittin Me?"
Well, it just so happens to have originated through the Father of Our country, way back when George Washington was crossing the Delaware river with his troops.
There were 33 (remember this number) in Washington 's boat. It was extremely dark and storming furiously and the water was tossing them about.
Finally, Washington grabbed Corporal Peters (remember this name) and stationed him at the front of the boat with a lantern. He ordered him to keep swinging it, so they could see where they were heading.
Corporal Peters, through driving rain and cold, continued swinging the lantern back and forth, back and forth.
Then a big gust of wind and a wave hit and threw Corporal Peters and his lantern into the Delaware . Washington and his troops searched for nearly an hour trying to find Corporal Peters, but to no avail. All of them felt terrible, for the Corporal had been one of their favorites.
Sometime later, Washington and his troops landed on the other side, wet and totally exhausted. He rallied the troops and told them that they must go on.
Another hour later, one of his men said, 'General, I see lights ahead.' They trudged toward the lights and came upon a huge house.
What they didn't know was that this was a house of ill repute, hidden in the forest to serve all who came.
General Washington pounded on the door, his men crowding around him.
The door swung open, and much to his surprise stood a beautiful woman.
A huge smile came across her face, to see so many men standing there.
Washington was the first to speak, 'Madam, I am General George Washington and these are my men. We are tired, wet, exhausted, and desperately need warmth and comfort.'
Again, the Madam looked at all the men standing there, and with a broad smile on her face, said, 'Well, General, you have come to the right place.
We can surely give you warmth and comfort. How many men do you have?'
Washington replied, 'Well, Madam, there are 32 of us without Peters .'
Thanks for the good advice Lilli and Sheila. I have been looking around at some of the ALF and NH nearby. The one that seems most appropriate has progressive care units that she could transition to as she declines more. And yes, they do have a memoryn care unit. There is one more that I would like to check that is affiliated with a local hospital.
Mom is happy to be home. She has even been alert and reading some tonight. I text my brother a little while ago to tell him I forgot mom's pillows at his house. Would you believe he wasn't home? Why do I actually expect better from him? Oh well, chalk that up to experience.
Well crew I am still doing laundry while I "rest" so let me fluff and fold. Have a good night dear friends.
Diane ~ I feel for you. When I started deteriorating physically and emotionally, everyone told me that I couldn't do it myself and that I needed respite. It's a nice thought, but who's going to help? I don't see any of them at my doorstep. I don't have any sibs. My husband's kids don't even call to find out how he's doing. For about seven years, they've been promising to take him fishing--hasn't happened yet, and now it's probably too late. I digress. This was supposed to be about you.
Unfortunately you can't force your brother to pitch in. Is he adverse to putting her in a NH? A thought: What do you think he'd do if you brought Mom to his house and flat out refused to accept her back into your home until you've recharged yourself?
One of the first things I did when getting my ducks in a row was to make an appointment with my lawyer and a financial person from her office who specializes in elder law. From some of the information I got about NHs, Medicare should pick up the cost after your mom meets the spenddown. One source that's been very helpful for me is the Department on Aging, who referred to my county. Unfortunately it doesn't work out as well for spouses. If I spenddown for Medicare to pay, I won't have much to live on myself. But that shouldn't be an issue for you; however it probably will affect inheritance.
As far as your mom falling trying to get out of bed, the bed rails should keep her from getting out of the bed, unless she's very spry and mobile. Even if she is, the NHs my husband's been in have bed alarms that alert staff. They have sensors that go off when someone has shifted enough weight when trying to get up.
When you are checking out the NHs, find out if it is especially for people with memory problems or has such a unit. I found this out the hard way. The first time Alan had to go to NH rehab, he was a flight risk in that he continued--as in every five minutes--to try to go out to the parking lot because "My wife is picking me up." Since NH's aren't allowed to use restraints and it wasn't a locked facility, I had to hire an agency to provide sitters to the tune of $25/hr. 24/7. It totalled $10,000 just for the short time he was in there, and it's not covered by insurance. This time, I chose a NH that was affiliated to the hospital he was in. They have a locked unit with staff geared to handle dementia, so no sitter is necessary. Hindsight is 20/20.
This disease not only strips the afflicted and their caregivers' physical and mental well-being, but usually also strips them financially.
Diane, I think the problem in families goes way back to childhood. After having this experience, I'll bet you that I could go into any young family and point out the kid that will become the eventual caregiver. Also, most caregivers are women because, traditionally, women are seen as the "nuturers" based only on gender. Usually, men do not get opportunities when the are younger to practice these skills...they do not baby sit or have connections to caregiving. So it is not a surprise that they do not develop these skills as adults. No excuses here...they are still responsible for their parents. And if they are not the caregiver types, as in the case of your bro, then they should be pitching in, in other ways. To simply tell you to "come get Mom" because she is a bother to him, for such a short period of time, is inexcuseable. So what is the solution? I am very forward looking when trying to figure these things out. Dwelling on past discretions does no good and is not productive. So I would take the reigns, if I were you. Start by visiting the facilities in your area. There are many "hybrid" faclities that have more care than an ALF and are not as restrictive as a NH. If your Mom is mobile, she may do well in a small group home that has an emphasis on memory care. Then you can return to being the caring daughter who does other things for her...and, believe me, there is still a lot to do. We all start out thinking that we can do it all and feel as though we have failed when we discover that it really takes a "village" to care for an elder. It was unrealisitic in the frist place to try and do it all...it just took us a while to figure that out. Congratulate yourself for getting this far, but be proactive. Do not sit around and wait for the sibs to dole out advice to you. How dare they? You are on the front lines and they are using that old ploy of "well, just put her in a NH" knowing full well that you would step in and take over. Get all your ducks in a row, gather all the information you need, including financial, then sit the sibbys down and TELL them how its gonna be. You might shock the hell out of them. Good luck and get a well deserved rest....Lilli
"If you are not the lead dog, the view is always the same." arf, arf...
Mom is back home and I'm cooking dinner. My brother did agree to have someone here tonight and tomorrow night from 11pm to 7am so I can get a good nights rest. I bet you mom sleeps through the night tonight! Now that mom has been declining so rapidly I'm not against a NH, it is the finances. My sibs were ready to put mom in a nursing home back in July until they found out the cost. On the emotional level I know if mom goes into a NH she will be completely disoriented for awhile and I'm afraid she will try get out of bed and fall and seriously injure herself. When she has been in the hospital overnight in the past I have all but had to tie her down to get her to stay in bed. Logical or not, if mom hurt herself I would feel like I failed to protect her. This wouldn't be an issue if my brother would help me with mom, but we all know how that is. I will take my two nights of help and try refocus my energies until I can decide on a long term arrangement.
I've got to get mom fed and I will check in again later.
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Christina, I had the same kind of early relationship with my mom. She wasn't mean, but her relationship with alcohol took precedence over me. Only with the help of a good counselor was I able to grieve for what I think of as my lost childhood and forgive, knowing she--they, Dad too--did the best they could. Life dealt a cruel blow in that, after all those years, my mom and I started to connect on a Christmas Eve, and a stroke took her away two weeks later before we could benefit from the newly forged relationship. Although it was a few decades ago, I still haven't made the last stage of grieving with the relationship that could have been. I've always struggled with acceptance when it comes to things I feel cheated of. I feel cheated of a childhood, cheated of my married-kids-white picket fence era, now my golden years, since my husband and I didn't get together until our late 50's, and his mind started it's downhill slide soon after. Whoa. Talk about pity pot. I'd better flush and get on with things. Just in time--the Comcast tech is here to fix the DVR.
Kuli, you keep talking about those feelings here, get it all out when you need to. Your feelings are your wound and it hurts deeply. Going through the pain of grieving is so hard and I admire you for your willingness to "feel" it because the only way to get through something is not by going around it but directly through it. I promise you that you will get to the other side of this deep grief and when you do you won't lose more of your father but you will hold him and the memories alive in your heart like a cocoon. Later it will give birth to empathy and understanding others who much go through grieving. God bless you Kuli.
Carolyn, I am confined upstairs, but I can leave if I want to. I keep telling the drywall guy who is cutting through the stucco outside,"Remember the gas line", as if it were the Alamo. Very dusty, very noisy, but, we must do this work, as 3 slab leaks in 5 years is demoralizing and unhealthy if mold forms.
I understand about parents and unhealthy relationships, about projected guilt and neglectful siblings. Every one does the best they can, or feels like doing at any given moment. When I have made that statement about my Mother--accepting that she did the best she knew how--I really do not believe it. I still believe that she knew better, but that she was self-concerned, nervous, and was mentally ill or had some other malady that made her a poor choice to be a Mother.
I say that inspired by memories from my moment of awareness--which was very young--to the moment I became responsible for her. So many memories of her weird priorities, her neglect, or seemingly uncaring, unmotherly ways.
Those of you who had nice childhoods, or loved your Mothers, who received love and/or were financially supported by your Fathers, have siblings who you have happy childhood memories of, etc.: Good for you. Some of you did not.
Life within a family should be equitable on some level. One cannot undo a parents mistakes, or control their sibling's behavior with threats, or interfere with God's plan for someone's life.
I have thought, if it were not for me, seeing to my Mother's care the last 3 years, and it was up to my sister, visiting her a few times a year in a care home, I doubt our Mother would be alive today. Realistically, would that be a BAD THING?
Is she getting anything out of life? I try to "help" her get something out of life every day, but what the hell am I doing it for? If I act like my brother, Mother would be gone from a broken heart, if I act like my sister, she puts up a shallow front for as long as she can generate that behavior. I think she's past it.
Reality is that each of us is/was the caregiver, we have our unique family dynamics that cause the situations we are dealing with.
Guilt? I have NO GUILT, even about getting upset with my Mother when she was here. I have made up for it a million times. Move on. My life is MY LIFE. Her life is her life, and I am NOT going to live it FOR her. What is that all about? Meaning, I realized at some point last year that I was giving up my health, my freedom, my entire house transformed into "Christina's Care Home for the Queen Mother". Why? Because I am a more compassionate, generous person than my Mother was, than my sister or brother are? Or because I am a chump, I am still trying to EARN the love of my Mother? Some in my family have cruelly said that.
I'll tell you this: when my Mother is gone, I doubt I will feel guilty. Will I miss the time I take out of each day to visit her, take her out for walks, see her enjoyment from eating a piece of See's candy, sing with her? I think perhaps I get more out of it than she does, but I DO IT for her, Not for me. My sister visits a couple of times a month for HER, so that when Mother passes, she can say,"I drove through windstorms once a month, half a year to see my poor Mother".
Bull shit, pain in the ass.
I value life from the spiritual instant of conception, to the spiritual instant of the soul leaving the body. If a person is alive, they are meant to be here, whether it is convenient or not. I also have learned to value my own life, the good family life I have worked so very hard to create for myself. I have given my Mother more consideration, more of my time, more concern for her medical and emotional needs in the last 3 years, than she ever gave me my entire life. No, I do not feel guilty.
Unfortunately, I don't think my sister or brother feel guilty, either, or they would "do something", wouldn't they? Those of us with a HUGE conscious are going to think this way; the others don't.
Who should have sense of guilt? Us, who sacrifice our life to our relatives who need us, even if sometimes we make mistakes or we give them 90% instead of 100% of attention and care, or our siblings who don't want to spend with them one whole day or one whole night? Really, I am sure when my mother will not be with me anymore I will feel the same sense of guilt thinking that I have done something wrong, that sometimes I have not been patient enough...
But this is not right.
It's not selfish to cry for yourself, not at all. You've done so much and it's gone beyond what you can do. When we lose self care and self love to give ourselves self care then we need to listen to what our hearts are telling us (yes we should have a heart for ourselves) when we've done to much and crossed that line. Your first responsibility is to yourself and we were taught as children that it was selfish to think that way but we were taught wrong. When our mind and body are telling us to stop because we are not just tired but to tired, in pain physically and emotionally, just wiped, it is our very "soul" speaking to us. If we ignore it we are killing ourselves.
Being a Martyr helps no one. I see to many people Martyring themselves under the name tag of doing the right thing. That is a self deception that damages us on so many levels. It's the right thing to do to recognize our limitations and get help, it doesn't mean we've failed but just the opposite "we did all we could until we could do no more without harming ourselves" That is real Bravery.
-SS
I'm confined to the second floor today - my contractor and his crew are working on the first floor at long last. The kitchen is being reconfigured to allow easier access to the frig and the gas fireplace is being replaced and re-tiled. I do feel like a prisoner up here. lol
I'll have to keep this short as I pulled my back out Saturday and it really hurts to sit here. But I wanted to check in to see how everyone is doing.
Christina, you are so kind to everyone here. You touch my heart every day.
Diane, I'm so proud of you. It's hard to break out of our molds to take care of ourselves by reaching to others for help, especially when they don't give it freely. I haven't written much lately, but I've been reading so I know what you have been dealing with. It's wonderful that James was able to drive to church!
Welcome Sheila. Kuli, Cricket, cuz, SS, Liliput, Linda, Austin, and everyone I didn't mention - Hi and hugs to all of you.
I have to get off my back for a while - I'll try to check in later. Bee
Dad fell before Christmas, was in the hospital, in ICU, out of ICU now in a short-term rehab place that also has long term care. He can't walk or take care of himself personally. I don't think he is coming home. I'm exhausted, can't sleep and cry all the time. But I'm crying for me. How selfish does THAT sound? Crazy.....we should have a better idea in two weeks. Have legal issues to deal with. My siblings know nothing of what is going on except what my mother tells them. I don't hear from either one, ever. In the mean time, I have to deal with all of her OCDs, hawking up flem, matching purses, hoarding bags, (she'll rip your arm off if you take a bag from the house!!), and now have scheduled another hip surgery for her next month. I can't do this anymore.....I'm just wiped.
You wrote, “…I couldn't have stopped the dying process no matter what I had done.” Under all the stress of caregiving, I think we forget that. I just spoke with my friend last night who cared for his Gma for many years. He still lives with the “coulda, shoulda, woulda” doubts. She was 95 when she passed…I assured him that her life was extended due to his care, so when it was her “time” it was out of his hands.
You wrote, “The caregiving doesn't end when they pass, it only ends when you come to acceptance of their passing.” When you work with and live around someone in such intimate conditions, it takes a long time to fill that void. Others will grieve your father’s passing too, but not in the way a family caregiver will. The void comes from personal loss and from losing an honorable “job.” So, it is doubly hard to fill in that space.
Prayers, good wishes, and love to all who care for a loved one in any way we see best. It really is something only other caregivers can relate to.
195Austin: Good news about your friend. I hope family is still visiting her.
Kuli, thank you for the information about "terminal agitation". I don't think mom is in the final stages so I'm going to guess it is agitation caused by the dementia. She has an appointment with the Geriatric Psychiatrist on the 17th so I will discuss it with her.
Well the PCA was here lastnight and wouldn't you know it I couldn't rest because my back and legs hurt so bad! Murphy's Law! Oy vey! I have another one coming tonight and I'v taken an anti inflammatory and plan to sleep well tonight. It was definitely a relief to be "off duty" even if I didn't sleep. James and I went to church today. It was the first time he had driven since having his heart attack. It was a good mental booster for him.
Linda, my heart says keep mom at home as long as I possibly can and do like Lilli said "tell my family this is what I need". Would you believe tonight bro was out to dinner when I needed to get mom off the floor. She didn't fall but rather slid out her chair as I was trying to get her on her feet. Thank God the strong young guy next door was home and got mom off the floor in seconds.
Kuli, when my father died over 20 years ago he had not been ill long and really didn't require caregiving. However, I was the only one home when his tumor ate through his pulmonary artery and he drowned in his own blood. It took me over a year to stop blaming myself for not acting sooner, not knowing what to do, did I cause his death, etc. Emotionally some how I felt I caused his death. I know the situations are different, but I do understand the second guessing. Time and counseling will help you. Please stay with us and share your grief. It's a heavy burden to carry by yourself. We will each face this loss soon or have experienced it recently. We are more than pissanapplesauce! We love you and all the others that have lost their loved ones.
Well crew, let me see if I can get mom in her nightie before the pca for tonight shows up. The old girl is too curious to fall asleep before she meets the pca :) Have as good a night possible and I'll chat with you tomorrow.
Love ya,
Diane
Meanwhile ~ "I don't know why something that is inevitable, and impossible to change, is so hard to except? "
No matter how much we buck up for the inevitable, no matter how much we think we've prepared, we are never really ready when faced with the reality of nevermore. Final. It's just too much for us to wrap our heads around. Eventually I think we just get used to it. Used to the pain and emptiness. And, no matter how much we've done for the loved one, there's always something that we regret and desperately want a chance to make it right, and that chance will never come. All our lives, we've experienced time moving forward. Time stopping is an unimaginable shock.
.
Good night everybody!
Diane, please don't feel guilty. you have done the best you can. That is all any of us can do.
diane - do what ur heart tells you . dont listen to anyone but ur heart . i agree with cricket amen to that .
i have done the right thing havin dad here , he doesnt belong anywhere eles but here with his baby girl . ifhe was somewhere eles i be worried about him . like kuli said , she couldnt rest at home without her dad .
i would have someone come in ur home and stay how ever long u want them to stay and come back again tmr . till u get ur feet on the solid ground again , u know u can always ck mom out when ure thinkin of her and go back to bed and knowing she is ok . right or wrong like cricket said , do what ur heart tells u .
we re doing ok here , same old stuff .
rossella - no more bandit #2 , uh . sure can not have a dog that likes to kill cats , nananana . lucky my bandit #1 likes to sniff the hellout of my cat , well one time ge grab her tail and flung her around . beat his ass for doing that . he does it again but i d say ohhh bandit then he come arunnin and hugs me . i love that dog ! hes my boy ....
ur new dorthy looks so happy with you . big hugs to u rossella ! u gave her a home with open arms , i love u rossella .....
i ve been wanting to go to chattin line but havent went there for a long while , i cant sit at this puter too long , am always up and down and zoom or zleeping ,
mm like right now i need to throw laundry in the washer and fold the bed sheets thats in the dryer , guess i did laundry on new years day and now i have this bad luck that laundry just never ends here lol , christina ! take that spell off of me waaaaaaa . hee heee .
miss you all and i hope that who doesnt come here much anymore is havin a good evening and all is well with em all .
thought of deefer today and said a prayer for her .
love you all xoxoxox
only know what I must do for myself. We are all different, with unique details.
Just want to say good luck, Diane, and I'll be praying for God's grace to pave the way for an easier transition. I'm starting school this week and doing construction, so maybe check in later this week. Blessings Everyone. love, Christina xo
ZEN TEACHINGS
1. Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me for the path is narrow. In fact, just leave me alone.
2. Sex is like air. It's not that important unless you aren't getting any.
3. No one is listening until you fart.
4. Always remember you're unique. Just like everyone else.
5. Never test the depth of the water with both feet.
6.. If you think nobody cares whether you're alive or dead, try missing a couple of payments.
7. Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes.
8. If at first you don't succeed, skydiving is not for you.
9. Give a man a fish and he will eat for a day. Teach him how to fish, and he will sit in a boat and drink beer all day.
10. If you lend someone $20 and never see that person again, it was probably well worth it.
11. If you tell the truth, you don't have to remember anything.
12. Some days you are the dog, some days you are the tree.
13. Don't worry, it only seems kinky the first time.
14. Good judgment comes from bad experience ... and most of that comes from bad judgment.
15. A closed mouth gathers no foot.
16. There are two excellent theories for arguing with women. Neither one works.
17. Generally speaking, you aren't learning much when your lips are moving.
18. Experience is something you don't get until just after you need it.
19. We are born naked, wet and hungry, and get slapped on our ass... then things just keep getting worse.
20. Never, under any circumstances, take a sleeping pill and a laxative on the same night.
"You Gotta Be Shittin Me?"
Well, it just so happens to have originated through the Father of Our
country, way back when George Washington was crossing the Delaware
river with his troops.
There were 33 (remember this number) in Washington 's boat. It was
extremely dark and storming furiously and the water was tossing them
about.
Finally, Washington grabbed Corporal Peters (remember this name) and
stationed him at the front of the boat with a lantern. He ordered him
to keep swinging it, so they could see where they were heading.
Corporal Peters, through driving rain and cold, continued swinging the
lantern back and forth, back and forth.
Then a big gust of wind and a wave hit and threw Corporal Peters and his
lantern into the Delaware . Washington and his troops searched for
nearly an hour trying to find Corporal Peters, but to no avail. All of
them
felt terrible, for the Corporal had been one of their favorites.
Sometime later, Washington and his troops landed on the other side,
wet and totally exhausted. He rallied the troops and told them that
they must go on.
Another hour later, one of his men said, 'General, I see lights ahead.'
They trudged toward the lights and came upon a huge house.
What they didn't know was that this was a house of ill repute, hidden in
the forest to serve all who came.
General Washington pounded on the door, his men crowding around him.
The door swung open, and much to his surprise stood a beautiful woman.
A huge smile came across her face, to see so many men standing there.
Washington was the first to speak, 'Madam, I am General George Washington and
these are my men. We are tired, wet, exhausted, and desperately need
warmth and comfort.'
Again, the Madam looked at all the men standing there, and with a broad
smile on her face, said, 'Well, General, you have come to the right place.
We can surely give you warmth and comfort. How many men do you have?'
Washington replied, 'Well, Madam, there are 32 of us without Peters .'
And the Madam said, 'You gotta be shittin me.'
Mom is happy to be home. She has even been alert and reading some tonight. I text my brother a little while ago to tell him I forgot mom's pillows at his house. Would you believe he wasn't home? Why do I actually expect better from him? Oh well, chalk that up to experience.
Well crew I am still doing laundry while I "rest" so let me fluff and fold. Have a good night dear friends.
Unfortunately you can't force your brother to pitch in. Is he adverse to putting her in a NH? A thought: What do you think he'd do if you brought Mom to his house and flat out refused to accept her back into your home until you've recharged yourself?
One of the first things I did when getting my ducks in a row was to make an appointment with my lawyer and a financial person from her office who specializes in elder law. From some of the information I got about NHs, Medicare should pick up the cost after your mom meets the spenddown. One source that's been very helpful for me is the Department on Aging, who referred to my county. Unfortunately it doesn't work out as well for spouses. If I spenddown for Medicare to pay, I won't have much to live on myself. But that shouldn't be an issue for you; however it probably will affect inheritance.
As far as your mom falling trying to get out of bed, the bed rails should keep her from getting out of the bed, unless she's very spry and mobile. Even if she is, the NHs my husband's been in have bed alarms that alert staff. They have sensors that go off when someone has shifted enough weight when trying to get up.
When you are checking out the NHs, find out if it is especially for people with memory problems or has such a unit. I found this out the hard way. The first time Alan had to go to NH rehab, he was a flight risk in that he continued--as in every five minutes--to try to go out to the parking lot because "My wife is picking me up." Since NH's aren't allowed to use restraints and it wasn't a locked facility, I had to hire an agency to provide sitters to the tune of $25/hr. 24/7. It totalled $10,000 just for the short time he was in there, and it's not covered by insurance. This time, I chose a NH that was affiliated to the hospital he was in. They have a locked unit with staff geared to handle dementia, so no sitter is necessary. Hindsight is 20/20.
This disease not only strips the afflicted and their caregivers' physical and mental well-being, but usually also strips them financially.
I wish you luck and God's blessings.
I am very forward looking when trying to figure these things out. Dwelling on past discretions does no good and is not productive. So I would take the reigns, if I were you.
Start by visiting the facilities in your area. There are many "hybrid" faclities that have more care than an ALF and are not as restrictive as a NH. If your Mom is mobile, she may do well in a small group home that has an emphasis on memory care. Then you can return to being the caring daughter who does other things for her...and, believe me, there is still a lot to do.
We all start out thinking that we can do it all and feel as though we have failed when we discover that it really takes a "village" to care for an elder. It was unrealisitic in the frist place to try and do it all...it just took us a while to figure that out. Congratulate yourself for getting this far, but be proactive. Do not sit around and wait for the sibs to dole out advice to you. How dare they? You are on the front lines and they are using that old ploy of "well, just put her in a NH" knowing full well that you would step in and take over.
Get all your ducks in a row, gather all the information you need, including financial, then sit the sibbys down and TELL them how its gonna be. You might shock the hell out of them.
Good luck and get a well deserved rest....Lilli
"If you are not the lead dog, the view is always the same." arf, arf...
Mom is back home and I'm cooking dinner. My brother did agree to have someone here tonight and tomorrow night from 11pm to 7am so I can get a good nights rest. I bet you mom sleeps through the night tonight! Now that mom has been declining so rapidly I'm not against a NH, it is the finances. My sibs were ready to put mom in a nursing home back in July until they found out the cost. On the emotional level I know if mom goes into a NH she will be completely disoriented for awhile and I'm afraid she will try get out of bed and fall and seriously injure herself. When she has been in the hospital overnight in the past I have all but had to tie her down to get her to stay in bed. Logical or not, if mom hurt herself I would feel like I failed to protect her. This wouldn't be an issue if my brother would help me with mom, but we all know how that is. I will take my two nights of help and try refocus my energies until I can decide on a long term arrangement.
I've got to get mom fed and I will check in again later.
Love ya,
Diane