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i can relate to this very well all my firnds scattered when i moved mymom in my placein 2009 i was her sole care giver and no -one wanted to help me out towrds the endmy was really going down hill more presser on me i became so burnt out at the end i eneded up puttin her in a nursing home rehab she was at the end o stages of her demntia and alzheimers i lost her december 10 2010 . I really miss her still greving over her
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Dear Menohardy, regarding what would I do if my brother did everything. I would probably crap myself and then I would go saddle a couple of my horses and take my 5 dogs out for a ride with me. I am a caregiver, but that does not define me. I have been a nurse for 25 years so I have the expertice to deal with my folks health issues. Built n addition on my house so mom & dad are close. My brother believes dad should be in a home (why he cares is beyond me since he doesn't participate with mom & dad). Since mom wants dad at home and we can help and he is safe~~my bro has sort of disowned us. I spent about a week wasting my enery being angry and hurt and have come to realize that his pulling away is all about he and his wife~guilt and fear. IT IS ABSOLUTELY NONE OFMY BUSINESS what he or others think of me. Is this the hardest thing I have ever done~You bet. Would. Do it again.. YES, in a hot second. My brother is the one who is missing out. , My own personal time has been drastically cut down. But I also know that I am not God and cannot control everything. And if I don't take time every now and then to ride one of the horses, or walk the dogs.....I won't be woth a damn to anyone. And my folks sacrificed for me. I was not raised to throw elderly folks intoa home just because things are tough. That I not to say that the future may not require this decision. But for today I feel honored to be able to help my folks. It is tough as hell, but my choice. And I know when I lose my folks that my hearty will be broken. But I also know I will have no regrets. Today is a good day despite incontinence, dementia and all that goes with it!!
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Well PegPeg, A Psychologist with a PHD and who has been a champion of the elderly for about 50 years is full of it-full of love, respect and an advocate for the victims of elder abuse by squabbling narcissistic family care-givers who use their loved ones as a cash cow and treats them less than the family pet. He teaches at several universities pro bono and specializes in turning fear of death into tears of joy. He is so full of it he repairs dysfunctional adults fighting over mom and pops will even before they are gone. Professional care givers know what I am talking about. They see it all the time. I am taking classes because taking care of my dad opened up my understanding to dementia, just a crack, enough to know I needed to know more. One of the reasons friends stop including you on their social calendars is because they are afraid of death and all that goes with it. We avert our eyes instinctively from the reality that we too will face old age. A Palliative therapist says don't turn away-embrace it. Don't blame a brother or a sister who doesn't help you-they can't handle it. You are caring for your elderly mother or father out of love and respect. Never mind what others are doing-you chose to be their caregiver. You didn't have to. You could have let the professionals do it but for whatever reason you decided to do it yourself. If it was financial gain or the avoidance of losing the home they worked for then again that was your choice.
Thank you for the hug 195Austin. PegPeg-what can't you believe a professional told me? Please-be more specific.
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In all fairness, I don't believe that our friends change and abandon us. It is OUR lives that change when we become caregivers, not theirs. My friends are doing what (we) they have always done. We can not get up and go with them the way we could before Mom came to live with us. I don't blame them, can't blame them. It is life as normal for them. I can not and will not fault them for that. I do get angry that I can't get together with them like before, and I do feel isolated at times. I am early into this caregiver life and my thoughts as time passes may change, I truly hope not. I will reach out to them, invite them over to my home for visits, diner,BBQ's. Or just a nice phone conversation. I personally with be calling our public health nurse, to see if there is a list of volunteer's who would be willing to come stay with Mom, even just for a few hours so I may get out and have lunch with a friend, or run errands. I hope this helps. Life is good, live it feeling Blessed.
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Menohardy I think your Dad would be proud of you both for staying on AC and also for getting into the health field-you will be an asset-it sounds like you have a tender heart- I am so glad that you prayed with you Dad-you are special and good luck with you education.
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Dear menohardy

What is a Palliative care psychologist? Sound like they were full of it. Plenty of things to replace negativity with! Can not belive a profesional told you that. Life is what you make it. How do you get your life back is to realize it never went anywhere. Good to hear you are doing medical training in the caregiving field, it always needs good people. Sorry, for the loss of your father, sure he is smiling down on you.SMILE!
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I have learned that it is far better to have one or two true friends than a hundred fair weather ones. I assume that most of us have been brought up under the Western Philosophy and since I've been studying the Bhagavad Gita and the Dhammapada
I am learning patience truly is a virtue and letting go of negative thinking has done wonders for me. The more I lower my expectations of others the less disappointed I am when the phone stops ringing and my social calendar is cleared. I am learning that the only thing I can really change in this entire universe is myself.
I talked to the Palliative care psychologist briefly shortly after my dad passed and he told me we hang on to negativity because if we let go of it we have nothing to repace it with. Then he asked me to think about that. I did. I inventoried all the things that are negative in my life and found out that if I rid myself of them I would practically have no life at all. Whenever I check my emails I am left flat if no one has emailed me. If my phone doesn't ring I get upset and start dialing. What has happened to us? We can't go anywhere without our cell phones. The other day I was driving somewhere and found myself staring at someone in the next lane picking their nose! Think ABOUT-sorry, caps lock-think about what we have and don't have? To the poster who said her brother lives five miles away and does nothing-would you be happy if he did everything? Then what would you do? Since dad has passed I have alot of free time on my hands-time for introspection. How do I get my life back? Did I like my life when my parents were well? I just signed up for a medical training course as I intend to work in the Care Giving field because I have some ideas that may help others who were in need of pro-active care. My dads doctors thought he was special-I don't think so-I think I tried different things that helped him stay connected to our world with a bit more cognition. I could have setled for just feeding and cleaning him up but instead I worked with him full time prayingf I would get him back. I didn't. But he was a lot more aware-alot more. I really believe that alzheimers patients try very hard to educate us and we are the ones who don't get it. Why? Because we are set in our ways and live in our world-try reaching them in theirs.
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Hi Carmen P--I will happily share my firends with you, but only if you will kick my brother in the butt , ha ha ha
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DesertRat555......we need a little humor..... can you share your friends with us? We are always available! Hee hee. Maybe we are all stronger than we think we are and don't need friends right now. Just a thougt!
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I am so sorry that those that you felt were friends have deserted you. I have had exactly the opposite experience. My dear friends are here all the time. But my brother that lives only 5 miles away has completely deserted myself and our parents. If the folks you felt were friends deserted you then I doubt if they were truly the friends you thought they were. I am sorry that this has happened to you.
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I have been a caregiver to my severly disable son for 21+ years. Friends what friends? Whats that? Yea Yea I have reached out countless times to people and still do. Most people do not get it or care. Its a lonely life. I find ways to entertain myself. Not sure what I am going to do when I can not take care of my son. My mother thinks I should put him in a home, so I can take care of her, not! I do not have a answer for this. You just have to do the best you can with what you have. Try to stay positive. One day at a time!
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So true EvaLyn! My best-friend of 20 years got mad at my mom for something she said about her dreams and then the friend told me that she didn't want to be around my mom anymore. Mom and I are kind of a package deal right now and will probably stay that way until she passes. I just can't believe that I was friends with someone that long who really didn't love me. I think I'm like a positive proton and all I attract are negative ones! That's a rut I have to learn to get out of, but for now my sunday school class will have to do because right now my nurturing instinct is getting all used up! :)
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I don't feel like I even have the energy to invite people over. I'm living in a foreclosure house that we are fixing up and it is a mess all the time. My husband has talked about having our sunday school class over. That might be a great place to start....if I can get started. I'm just whooped by all the emotional stuff and the physical labor of caring and cleaning. Hang in there guys!
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Care Giving vs. Care Giver. I have been in most of your shoes. Unfortunately, my mother and brother haven’t spoken to each other in over 30 years. I could be very angry and resent both of them. No, this is not reality. My father died at the age of 5 and my mother took care of both of us mostly by herself. What is sad in this situation is the old saying, “Forgive and Forget”. This is easier said than done. Even though this is a very difficult situation to understand, and I am caught in the middle of all of it, it is important to understand the situation from both sides. I miss the days when I was a child and all sides of the family visited each other and stayed together. Unfortunately our society today doesn’t allow any of us time to live close with our family members. You have the choice to live by yourself or build new friends in your life. Until just recently, I never understood the word “community” . When you find a true “community”, this is when you learn who your true friends really are. These are people who will help you and stand by your side no matter what happens. What is important is for you to find a true “community”. How does a person do this? Reach out to the people who have basically the same interest in life as you do. For example I belong to a Mountain Dulcimer club. I never thought I had real “true” friends until I started asking or their help. If you have friends who you thought were your friends all this time, and when times get rough and they run away from you, these people are not your “true” friends. What you may learn to do is “Think out of the box” and search for people who have the same interests in life as you and who care about you to help you”. If I have come on too strong, I am very sorry. If you want a friend who cares about you, this is the type of person that I am. My prayers and thought s are with you. You and your loved ones are very important and don’t let anyone tell you any different. If you have a long-time friend, and all of a sudden they are not there for you in crucial times, they were never a good friend to begin with. Your parents raised you -- not friends who run away from you.
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Dear gardener,
So you know. I recently went to a local caregiver meeting. As it turned out I was the only one there with the counselor. Anyway, she said we have to at times tell "little whlte lies." I do that as well, just to save peace. You're lucky your brother steps up to the plate and helps out. My brother finds every excuse not to do anything or offer advise or support. I haven't heard from him in almost a month and as each day goes by the resentment builds. He's my only sibling. He knows my father is difficult but evidently it doesn't matter. Oh, and I understand the wine thing. :-)
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Why not make a lunch at your house and invote some of your friends in to visit. Does not have to be fancy but you might be surprised if you reach out. many people will feel that you have your "hands full" and don't have time for them anymore. Tell them you still value their friendships even if you are tied to your home and invite them in to visit. You might be surprised.
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I feel all of your pain. Had a boyfriend but, that didn't work out. You'd think I was 15 years old going out on my first date. I swear Mom looked and sounded as if I was committing sin. She's a control freak and, she didn't like that she couldn't control my social life. She did try to make it difficult, though. Finally, I just lied to her. It's easier that way and I don't have to go through that unnecessary guilt trip she tries to put on me. Since honesty doesn't work, she is now on a need to know basis. It is what it is. I'm thankful for my brother.He takes Mom out to dinner and breakfast, an occasional play, so I can have my privacy and sanity. He's happy to leave that's for sure...I drink more wine:-))
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My extended family had a bad reaction to my mother living with us, but I was surprised that my husbands family had a terrible reaction too. What is that all about? Since my parents came to live here I have lost a best-friend of 20 years who decided that my mother had insulted her jeans and didn't want to be around her anymore, I've lost the one sister-in-law that I thought I got along with because she said I had been marginalizing them all for years, and very few people invite us out because of my mother being in attendance. I literally have no friends at this point and I meet people who I would love to get to know better and could, but I don't have the energy after dealing with my mother all of the time. It's a sad life sometimes. Now that my siblings and my husband's siblings are in distancing mode it gets pretty painful. Like a stab in the heart. I shouldn't care so much what any of them do, but I love them so I do care. I even had to block a few of them off of Facebook because they were writing mean crap to me on there and my daughter saw it and got really upset! Unbelievable! I guess the Devil really hates it when we do the right thing....I sure resent the "tiny minds" though....they are making sure that they are a burden to deal with. They keep telling me I am judgmental and I just resent them even more for burdening me when I really need some emotional support. They don't want her moving in with them! What are the accusations of judgmental all about anyway? Cause I'm a caretaker?
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I can certainly attest to EVERYONE scattering when my Mother came to live with us!
No one calls, maybe once a month my Mom's brother calls to check on her and I have a good friend who is going through the dementia thing with both her parents. My daughter comes in and says Hi to her Grandma, even though she is super busy with her work and her husband and our son in law, I can tell, is very uncomfortable being around Mom because there is NO privacy. When he stops by, it is for about 15 min. tops. My husband thinks he has said something to offend him and I told him No, it is just the fact that Mom listens to everything, chews on her teeth and smacks her lips and stares at everyone. He hasn't come back much since he and my daughter were picking on each other and my husband and I were laughing and picking back with them and I actually thought my Mom was going to get up out of her rocker and "thump" him! She actually glared at them!! I try to understand, but sometimes it is very hard and you really need people in your life. Don't think it is going to change any time soon. My only fear, and so far he has been wonderful, is that my husband is going to get tired of the NO privacy and her nosiness and how I have to take care of her and can't do everything we used to do together thing. I pray he will continue to support me and all the crazy things I do through my role as caregiver. My Father always said that my grandmother, Mom's Mother, was the nosiest woman he ever saw. No way, her daughter, my Mom, is way, by far, nosier than Grandma ever was!! Please say a prayer for my sanity, because some days, I just don't think I will make it through the day. Thanks for listening and take care!
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I once was the type of person I would drop everything to help out another person but now I can't be bothered because since becoming the divorced parent of 2 autistic individuals and caregiver for my mother, strangely, friends are hard to find or they act like they don't know you, as if my life is a stigma they do not want to be seen as associated with...you learn to become your own best friend, and as for relatives, well, all I can say is they never learned what the meaning of family is...my sister is too busy keeping up her high income lifestyle on a koolaid budget because her perfect appearance to the world is the only thing that matters to her, and common folk like me are a disgrace....you learn to walk to your own drummer and tell people to go to hell when they make judgemental comments...you become a very strong person with a backbone...I had a neighbour whom decided since she did not see me outside often call child and animal welfare officials on me to come in and investigate me 3 months after we moved into the home I purchased because she felt I must be doing drugs based on non-factual rumours from my ex whom just wanted to cause issues.......he also has mental health issues and needs the support of his mother now to be able to function day to day so it is like having another difficult 12-year-old to handle....life is hard and you find out whom your real friends and family are....sadly, you sometimes find out you never really had the friends and family you thought you did, which is why the internet is such a wonderful resource and support tool at times when you really need it.
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Our culture shuns the "disease of old age"-we are conditioned from youth that health is right up there with wisdom and wealth. We are like hamsters in a wheel-dieting, jogging, eating all the right foods, taking our vitamins-all to stay the inevitable; "Old Age"-Eventually barring disease other than old age or accident we will have our turn. Other cultures revere the aged. My social calendar suffered while I was caring for my father. After his Service, cremation and bvurial at sea I watched as my siblings and relatives and friends ate their honey glazed ham and deviled eggs. They were not there on those lonely days and nights I sat with my father. They did not understand why I fought so hard to keep him out of hospice but I learned so much caring for him-learned how much we fear aging and death and all that goes with it-almost as if it was catching. In a way I suppose it is-we inherited it the same as all living things do-it is a natural process. How many of us shun our parents from puberty on. I remember thinking once how ignorant my parents were. Then when I hit forty I wondered how they suddenly got so smart!
We can hardly avert our eyes to an auto accident but to see our parents shuffling down the hall in a fog is just too much for some. I learned that my dad was sometimes confused and sometimes out to lunch altogether but in between those moments I saw a charming man who gave me more love and understanding than any of my best friends ever cou or would. I have a little book called If Only I knew. Each page has something we can all relate to. If Only I knew...
this was the last gift I could give you
I would surprise you with something that says nothing compares with you...

If only I knew
my choices

however small and seemingly insignificant...
were taking me away from you,

I would turn around and run to




If Only I knew...

that success is never measured in dollars or positions.

I would have treasured
the things that last forever.

The way I look at it Our Parents and grandparents were and still are The Greatest Generation. How will History judge us? And if one believes in God How will God Judge us? I gave up my career to care for my dad while my brother and sister lived thousands of miles away keeping theirs going.
I closed my ears to their pleas of: "Put him in a home-he's gone!
No, he was not gone. I spent hours reading to him and trying to connect with my eyes and sometimes he did and I saw a world in those eyes of his-so bright and so young. The eyes never age-the skin around them wrinkle and grow dark but the eyes stay sharp-so sharp that not even cataracks could shut out the light-his light.
Sorry for the misspelled word. He saw beyond physical pain and limitation-I and my siblings lived somewhere in his memory and now he is with my mother and his mother he and my mother chose to keep in their home. I learned that death and old age is not something to be feared-it is a badge of honor that old and wrinkled skin. Only we can turn it into something else. I never want to be a burden to my children-no one wants that. But caring for my dad was never a burden-it was an honor and a privilege to learn to do what is natural-caring for someone you love with all your heart. I said goodbye as my dads ashes floated for a few seconds then settled beneath the waves to return to the elements and I felt rather than heard a "Well Done"- I realize now that death is a beautiful angel that comes to us in our darkest hour and walks us into eternity. Until death comes we are charged
with the responsibility of caring for our loved ones up to then. I have no regrets about missing social events or friends that stopped coming by-Fair weather friends who just don't get it-We are on this earth for one purpose. To learn-to be tried by fire and obstacles and old age. Whatsoever you do to the least of my brothers-that you do unto me
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I sold my home and moved in with my father after my mother passed away. It was a big mistake. Immediately after she passed he needed a triple bypass and was always upset, crying and didn't want to be alone. He has two classic cars with a 4 car garage. His car hobby is his life. My home, that I loved, only had one small garage. It was a decision I made at the time and regret it. Knowing my father's disposition I should have realized it wouldn't run smoothy. In the beginning I would invite friends here. Later he would comment that he didn't like them. One Thanksgiving I invited my grown children and my grandsons for dinner, also an out of town friend. I decorated the house, bought a centerpiece for the diningroom table, shopped for the turkey etc. That morning I got up early struggled putting the huge turkey in the oven, and started preparing all the other stuff. My father came into the kitchen and started telling me the rules for day, and said he would tell them when they arrived. My grandsons are not babies and are well behaved. Like most kids today they play their video games and are quite. I asked him why he felt it was necessary to even say anything to them. We had words back and forth and he said, "this is my house and I don't want anyone here.
I'll lock the doors ." I got very upset and actually didn't know what to do. I finally told him the day will go on as planned, but I will never invite anyone here again. I can't risk the the chance that he would pull this on me again. My family and friends invite us to functions and some times only me.
I realize everyone is busy with raising children and working. They also know if my father has a car show or whatever that will come first. He announced to the family that he met a woman he had worked with years ago. He told me he was going to tell them he had a girlfriend and didn't care if they liked it or not. She's 22 yrs younger. Actually she was very nice and the family liked her. They would go to all kinds of car functions, out to dinner etc. Now that he's 97 and failing she only calls on the phone. Never invites him to her home anymore. So to me she is not a true, good friend. I hear him telling her all the things that go on with the family. I really believe she calls to hear the gossip. On his birthday and holidays, he receives all the fancy greeting cards, but no one comes to visit or take him for a ride or even get a hotdog. I feel sorry for him because he likes attention but sits alone. He did that to my mother, left her sitting on weekends so he could go to the car shows. She would call me and ask if I were coming over. I would go take her for a ride, stop for lunch and sometimes shopping.
I didn't mean to go on and on, but I do realize the feeling of being left out and at times lonely. We have to push outselves to find what makes us happy. When you think about it there's probably many people feeling the same way
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Your experience is the same as most caregivers. Old friends slip away and seem not to care but mostly they do not relate. They are at a different place. I was shocked when I realized that all of my parents friends abandoned them when my mom was diagnosed with Alzheimer's. I was shocked when many of my friends abandoned me when I became the primary caregiver and I still saw them at my sons' baseball, soccer and golf matches. It was eye opening but it is not unique. My new friends became the caregivers who helped us with mom, the church ladies who would stop by trying to convert me to a new religion and fellow caregivers. It was similar to when I cared for my babies. My old friends faded away and new ones with small children replaced them. This is a great place for you to find online friends, your local senior centers and assisted living centers will have caregiver groups to find fellow caregivers and new friends. I even started chatting with some of the customers at the medical supply store....they understood. I know that you feel alone, sad, tired and abandoned by your former support group. This group is here for you. We understand and we will not fade away. Big hugs and support to you!!
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I am so glad someone finally said this. In the beginning they all professed their help with anything - helping with Dr. appts, checking in, etc. Guess what? Everytime I said I needed help they were all "busy". Imagine that. It makes for strained friendships. As far as family goes - I am an only child and so I don't have that issue - however - it made me really need the help of friends. As said in one of the posts above - They will go through this as some point also. We know what it's like.......
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Being a caregiver is a lifestyle and the past 2 years have changed our lifestyle dramatically. Sisters visit and just sit. Entertainiing Mom with their aches and pains. Not one offer of help or concern as to how I am doing. These are her very "it is all about me" daughters. My husband's family call constantly and come by as often as possible...live 40+ miles away. They send cute cards and flowers once in awhile to brighten my day. We are blessed to afford companion/nurse twice a week so I can get out and meet friends for lunch and still do a little volunteer work that I love so. Thank goodness for email and facebook. My friends know that is easier for me than phone calls or daytime visits. Everything said is repeated to my sisters when they arrive for their evening sit. My drop in neghbors never know when I am available to
.
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I find that we are given new friends for a new season. Do I miss my old friends? Yes, but they are not going through what we are going through and it is hard for them to listen to our cares. I am not interested in what I am going through, lol. How do I expect them to be. I am not hard hearted, I have just learned to accept that this is how it is for now. In the not too distant future, I will be missing my Mom but I will have the liberty to make new friends. What kind of friends will I have then? I am not too sure. I do keep in touch with some of the old ones on Facebook but it is not the same as talking to them. Life just changes for all of us. I hope this helps anyone a little bit.
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It was like that when my husband was dying. He was a man's man, always with his guy buddies. Well, all the Good Time Charlies just pretty much disappeared when he needed them the most. And they were nowhere to be seen afterwards. When I run into one or another occasionally, he will inevitably want to tell me a funny story about the old days. Of course, I wasn't there at the time. I seldom was allowed to be there at the time. And, I was busy working and raising our kids, keeping the home fires burning. My very close women friends were there afterwards and I will be forever grateful for them. Still, now that Mama lives with me, I have to initiate meeting them elsewhere. They seldom call me. They certainly don't offer to visit Mama & me. I had to sell our life long dream of a lake home (just a little trailer on a little lot, but loved it) to care for Mama. People who still live up there tell me how much fun they are having, but not invite/include me. One friend and her husband travel alot. I always here about their lovely adventures. I never get invited. So, yeah, I guess that is how it is with we humans. But, you know, I've met new friends here and we all get it and truly do wish each other the best. And, I've my lovely fb friends. And I've rekindld very old friends, the best. Perhaps it is just all about seasons of our lives.
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to lversaci, I think you would find that work friends disappear after you retire and that has little to do with you being a caretaker. It is out of sight, out of mind. If you want them in your life I suggest you call them... you reach out. But CarmenP, there is something about caring for someone who is at the end of life. And I agree that is it also family. I am caring for my grandfather and I see less family around than before he become sick. We had some out of town family come in to visit and held an "open house" gathering. I had an appt was was late getting back to the house. Everyone was in the kitchen talked and leaving grampa out of the conversation in the livingroom alone. I had to tell them that they needed to move the conversation into the livingroom so he could participate. It seems the average person can not handle mortality. I get emails telling me how important he is to them but I do not see actions to support that. Not sure there is an answer other than to tell you that you are not alone with this problem. It is so sad... like somehow they think they will catch something. I went to a friend's cookout. Her uncle was dying of cancer. I found him on the deck alone and not one of the family went to join him. I went up and just sat with him. I did not have to say a word, just be there. Deep breath.
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Ya learn who your True friends are - or aren't.
An ol' saying is: "The more I see of people, the more I love my pets."
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I know what you mean - all of you. When my 95 year old aunt came to live with me 3 years ago, all my friends became dots on the horizon. They still go to church and talk about the need of being a good neighbor and Christian -- I sure could use a few of those! When I run into people who dropped me, the first thing they ask is, "Do you still .. er, is your aunt still. . ." I tell them, yes, she's fine, thanks for asking, and they stand there doing the head bob, looking out to the horizon (where they probably wish they were). But then . . . I think about people I've known in the past who were dealing with some similar situation. Did I call them & offer help? Never. I figured they had everything covered, and maybe they did. Those were all families, and I'm alone. So, I don't know how to think about this problem. My family is greedy and mercenary, who stole all they could from my aunt before abandoning her. I won't hear from them until she dies and they want to see the will. My friends? Maybe they think I want to be let alone. We caregivers seem to have broken some cardinal rule of US life. When a family member gets disabled or old, put them away. If you don't, society puts you away. I have been on both sides of that, I guess, but never thought about it till now. So, I do what I can for a friend who can't leave her home, add her errands to mine, come by to visit, call on the phone, bring her a surprise meal -- why? Not because I'm a saint (watch out for my wings when I make a quick turn) but for my own personal growth. I don't want to be that person who deserts those who need help. Ok, end of sermon. "Blessed are the flexible, for they shall not get bent out of shape."Amen.
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