I have given up 4 months to care for my mother and my sister has done nothing.

After nearly 26 years of caregiving my 86 yo mother, I have to agree with the others and say, "Run, don't walk!" It doesn't get better . . . love is bliss, but doesn't cure all, believe me.

Know what, Delia. That statement does not help. It may be true, but there is no experience shown...in your short two sentences...that you have actually done this.

When one is in the middle of years long caregiving, situations come up that are not just "the situation," like a situation from years ago that is congealed into a single story. These people and situations are unfolding, changing, tripping us up, sabotaging our efforts, putting us on the defensive. Yesterday, today, tomorrow, next year.

Here are some tricks I've learned from various sources to keep going in spite of the highway spikes others throw in your path:

Whoever the other is, "pray for the magnitude of their soul" or ask blessing for the magnitude of their soul. So the other(s) grow into understanding of what is really important, fair, just, kind. One might imagine their soul is far away from their words and actions, from how they decided how to act. So, pray their soul grows to be more in contact with what is truly important in life.

By doing this, you do not deny your own common sense that they are wrongdoers. At this point, you don't have to love them, or even to like them. But it is a form of blessing or wish that is for their own interest, and ultimately for yours and the person you are caring for. Best for the situation, and you are not fooling yourself bestowing a blessing you do not really feel.

Another approach. "Pray for divine intervention for understanding." Must be willing to get understanding for yourself, of course. This allows one to "let go and let God," to put this situation "in God's room," and keep going without overly concerning yourself with the other. And you open yourself also for insight and transformation. Meanwhile, annoying thoughts about the person is somewhat off your plate.

Story: A man and his son are driving their wagon to market, when a man in a carriage drives madly past them, whipping his horses wildly. The man and his son are driven off the road, and their wagon almost overturns. As they pick themselves up from the ditch where they have landed, the son is about to hurl curses and insults after the wildman.

But he hears his father yell after him, "God bless you, son. God bless you!!"

The son is shocked. "Father! Why did you bless that man. He almost killed us!"

"I know," said the father. "But if he did not go forward in life without a blessing, especially now, he would be an even greater danger to others."
***
Taking that up a notch, wish even for great fortune, new job, new love, trip to FARaway land...for those bothering you. Not punishment. If they are so involved in their newfound goodies, they will not bother interfering in your life. Or perhaps feel secure and unstressed enough that they have more ease in actually helping. Perhaps they'll feel generous...or that nice offer from Argentina or Moscow will sweep them out of your life.

Little things like this, one can actually do. Growing into a totally forgiving being, turning the other cheek over and all the time that is hard. Admirable. Maybe we grow into it.

There is a new book out called "Spiritual Bypassing" by Robert Augustus Masters. He criticizes the New Agers who keep holding on to platitudes, spiritual posturing, wishful thinking. This goes for the religious as well...Rapture anyone? (today's the day...or not).

It is time to do the hard work of really working on oneself and not dreaming one's problems away. Doing these sorts of things helps dissolve the bitterness of dealing with the injustices/unfairness we often face as chosen caregivers.

You shall not bear any grudges against anyone but you shall love your neighbor as yourself. God Bless You and be strong she is still your mother regarless.

Oh, but in ONLY they really KNEW what you were going through...they would CHANGE and offer to help. REALLY. Seriously.

Alzcaregiver, thank you for all the great suggestions. And bless you for all you are doing for your own mother. That must be unspeakably hard some days.

And, yes, hardships are all relative. We've been on this path for so many years, as well - starting with my father, who kept our whole world in an uproar continuously. Dealing with "just" my mother is nothing compared to six years ago. It was so tangled up that sometimes my brother and I look back now and laugh at all of the drama with all of the family members chiming in telling us what we should do, but not helping.

Someone should put the word out that if you can't help a caregiver, for pete's sake, don't criticize. Of course everyone on this site knows that already.

Thank you again.

See if rather than spend time with your mom while in the room, to go with her to these events. If she gets 2-3 residents who will visit with her, or she with them, she will be happier. You might also find a nice digital photo frame, some even send photos wirelessly. The action of the slide show might keep her occupied, and if a new photo comes in every hour...or three at once, then two in an hour...even of mundane images...sent from your cellphone.

If this cross stitching becomes also a matter of making a gift for one of the more lonely residents, then she has a meaning. About a year ago, when Mom was finally without dentures, I made up the "kissy photo project" with the neighbors. I would bring mom over, dentureless. They'd make a big deal over her, with posed hugs and kisses (they do that anyway, no need to pretend). Big smiles. I made copies of photos, one set for Mom, one for them...and another excuse to visit. To make present of the photos. Take more kissy photos. Make more sets. another excuse to visit. More kissy photos...more printing sets...and on and on. Probably 6 times we did this. It worked.

Parlay one thing to the next. Go to her most active activity, and take photos, make prints and have her deliver them at the next gathering. Make a bulletin board for them perhaps. Something to get continuity in your mother's life THERE...without you so much.

Good luck,and hang in there. By the way, i am with mom 18 hours day, every day. Sometimes 24 hours day. She is totally dependent. We live in the same room, the living room. nine years now. Alone. For past 1.5 years, have had respite care 6 hours day, now 7 days week, but I am here 3-4 hours of that doing things here.

So...hardships are relative, I find. Some caregivers are pissed off when they have to interact with their parents once a week for a few hours. Some siblings feel put upon if they have to show up once every six months to help for a evening.

Your situation has been on my mind since I read about it this morning. I just remembered something that a wise social worker told my mother years ago when she was caring for her mother and was ignoring the rest of her family and her own life. My grandmother was being cared for in assisted living, but Mom spent every waking moment there by her side trying to make her happy.

The social worker said, "This is your mother's life now. The only thing that could make your mother happy is to be 40 again - with a family and responsibilities of her own. You giving up your life is not going to make hers significantly better. Find a balance in what you can provide for her without giving up the other blessings in your life."

I wish Mom could remember that now that she's pulling on me even more than my grandmother pulled on her. Now all I can realistically hope for is that I can remember it if someday I'm unable to care for myself and my daughter must help me.

You do have a life too. You've been a caring and responsibile daughter. I know it is difficult to let go emotionally and quit "owning" all of the responsibility - I'm not good at it myself. But do what you can and try to let the rest go.

I, too, have one sibling. My mother (with long-term issues with mental illness and now dementia) lived close to my brother for several years in assisted living. Now she lives close to me in an assisted living and he's hundreds of miles away. I've always had the responsibility of handling my parents' finances, but thankfully, I am blessed beyond measure that they had the resources for mom to be in assisted living now that Dad is gone. I am aware every day that we are blessed in that aspect.

My brother tells me that I definintely got the worst end of this deal because now Mom can no longer entertain herself, can't remember who anyone is, but me and now calls me every day to tell me how bored she is.

Even writing that last sentence sends me into an emotional frenzy. I go from pity that she no longer has purpose, to dread that it could happen to me someday, to aggravation that she is bored while just keeping her (somewhat) upright and alive has become my main "hobby". I'm never bored. I spend too much time trying to figure out how to make her happy, when even I realize that it is not my job. But somehow we get pulled into it.

It's certainly frustrating that I spend so much time trying to figure out what Mom can possibly do (like cross stitch, puzzles, rug making, scrapbooking, and on and on and on), buying these things and trying to help her figure them out plus keeping her finances in order and insurance and conferences with her doctors and therapists and yet all that counts is when I'm sitting right there in her apartment with her. When I'm not there, she thinks I've forgotten her, when the truth is that she is never more than a minute out of my thoughts and I never go a day without taking care of some aspect of her care.

Yesterday my husband and I went to see her and I took everything she needed to cross stitch. She was so excited about it and it actually came back to her how to do it (however, today may be another matter). She was so content with both us us held hostage while she sewed.

When it was time to go, we walked her downstairs where there was a birthday party for residents with live music. The social director told me how much they enjoyed Mom. I looked at the schedule of activities and the social director confirmed that she was showing up for almost everything going on. Then several of the residents came up and talked to her and said how much they enjoyed being with her and I realized that just like her memory of her family is gone, so is her memory of having done anything 30 minutes earlier.

But, no matter, the guilt is unending although unearned. You try not to buy into the feeling that sacrificing yourself and your life is the only answer, but when they truly believe that you are the only one who can make them happy, it's hard to keep perspective.

My daughter keeps telling me to pace myself - let the guilt go and try to have as much of a normal life as possible now, because there will come a time when she really will need much more of me. While I can understand what she's saying - because this could go on for years, doing it is another matter altogether.

TRY,TRY,TRY hard not to feel guilty and i agree run and run fast. i have been care giver for both my step father (who passed in august) and my mother for 8 yrs. i alone cleaned their entire house out of pictures, documents etc. i felt devastated to go thru two peoples lives that i loved and decide what should go-which was most of it because it was junk to me but to them it held value. pictures of once young, vital people living their lives... pictures of all of us together at holidays. my mother is 90 and thinks she is 13. she is obsessed with makeup,her hair and even goes to the laundry room and steals others clothing like she is at a shopping mall. she never calls to ask about any of us... it's all about her. she has "lists' of things she wants. i can't just visit i have to take stuff to her or take loads of crap she accumulates (clothes she has stolen or trinkets won in games) back home. she also makes crafts that she is so proud of and it saddens me that she is so excited about something my 9 yr old grandchild would be excited or even think goofy! there is so much.... people, relatives included have not a clue. both my siblings live out of state so they don't really think about it. they call her once a week to talk for 5 minutes and think she is fine! my sister lost her husband to cancer two years ago and was caregiver to him. and while i understand how hard that is... one doesn't realize what the role reversal does to a child that now treats their parent as their child. you will feel as you don't do enough, you do too much, you get sick of taking your vacation days to handle medical and financial stuff. and just wait if you have to go to medicaid when money runs out.... the rules and regulations are tedious and mind boggling! so once again i agree... RUN RUN RUN AND DON'T LOOK BACK you could end up hating your mother and your sister.

During this Thanksgiving season I will say, as I have always said,
"Be thankful for all that you have, as well as all that you don't have (that you don't want anyway!)"

Have a beautiful Thanksgiving holiday!

pamela,
DO NOT WEAKEN! STAY STRONG. Sounds like sis put mom up to this. Do not go! They need to work thru this themselves. Remember, there are 4 able-bodied beings to your ONE! They will handle it. You need a break. You did your time. Who cares what OTHERS think of you...it's none of your business!
Also, I agree with the other poster about the papers. Keep the originals for yourself & send them a COPY. Also, if POA was changed I would ask for a copy of the new one.

P.S. I forgot to add this food for thought.....WHAT OTHER PEOPLE THINK OF YOU IS NONE OF YOUR BUSINESS!!! (Even Jesus had enemies!)

Oh my Gosh - I am hurting for you!!! I also am the out of state daughter that did all the visting - sending money - buying airline tickets, condo down payments, furniture, vacations - my families birthdays were missed - grandsons ignored because she preferred girls - but now that she is without means of walking, thinking, planning - taking care of her own personal bodily functions - cleaning herself - I am the bad one that is forcing her to live with my family now and she hates it - cries all the time - I understand as you do the horror that a family goes thru due to this horrible disease - neither do I have any control over the money situation and to get a check from the family to help with expenses is like talking to a blank wall - I hope you can get some help somewhere - call your insurance or your Mom's insurance and find out if elder services are available - or try a hospital to find out if elder services are available - they will come to your home and access your mom and what her finances are and if she qualifies for aide assistance - paid for by them - there is alot out there to help - you just need to ask and tell everyone that you need help - I have had my mom at my home now - out of rehab - broken hip and alzheimers - for 30 days - and if feels like it has been 6 months - my friend gave me a book - meet me at the well - she could tell I was about to collapse and cry constantly - hardest job in the entire world - but then I realize those people that have taken care of paralyzed loved ones - babies born with severe needs and I then thank God that we did go 84 years without those problems - but when it hits it hits hard and you sound like you are getting it from all sides - I hope you don't cave and give your deadbeat family control - maybe that's why they are acting like they are to you - - talk to your friends - even if they don't have the same things going on - just ask them to listen - find the book "meet me at the well" I'll pray for you and God Bless You!!!

We have a lot in common. But I am an only child. My mothers mind is sound and after all I have done over the last 11 years, she accuses me of things that she did. She says lies about me and says she despises me. It is very difficult because I have put her first before my husband, children and business. I thought this was what I was to do. My mother was never a mother to me. She was always critical and I left home at 15 years old. She didn't have much to do with me till she got sick 11 years ago. Then she called me. I was advised to distance myself from her and never visit without someone with me. Hospice was with her for about 9 months. But, now she is in better health today, than over the past 11 years. When she was very ill and thought she was about to die, she was kind to me, but now she doesn't need me, so she is the old mom I use to have. The only thing that has gotten me through all these years is GOD. Praying and trusting GOD to take care things which are out of my control has helped more than anything. I have seen him provide people that saw and heard the real truth. I am now at a point where legally, I don't know what to do. Thank you for sharing and I will be praying for you.

kimbrough8 my heart really does go out to you, I wrote this post a long time ago and had only taken care of my mom for 4 months, (as someone pointed out to me a while ago). Since then my mom has gone downhill further and furtherwith Advanced Alzheimers. I made myself SICK with anger and came to the realization that it wasn't helping me. So in the process I had to come to terms with my sister because no matter what or how I thought about her and her family, WE had to do it together because it was no longer about she and I, it was about MOM.

I do not live in my moms house, my sister does. Together we have one main caretaker, and stand by caretaker, and my sister and I pick up the slack. It has really become a team effort and that is the only way OUR situation worked out. My sister realized she couldn't do it alone, as did I. In the beginning I took on too much and did not have the sense to ASK for help and that fell on my ignorance. Shortly afterwards my sister realized the same thing however it was still a few months before we came together. Now I still have the choice of whether to pick up my phone, or not. I also still have the choice to say Yea or Nae. There are times when I just do not want to go there.

I am not an expert here as you have people that have been caretaking much much longer than I, however I will tell you that whatever you do will not go overlooked. What you do is for your mom and no one else. Too hell with your siblings if they don't want to help, just do you. Now this is easily said, and harder to do but I am sure your children give you plenty to do.

About the home with all the "black" staff, I don't really understand your sister's logic on that however if you felt your mom was becoming more and more depressed and YOU felt it necessary to remove her, then so be it. Maybe that would have been the perfect opportunity for you to let HER take over.

Good luck to you and please keep us posted, we're all praying for you and I'm sure you've met some wonderful people here.

I'm sorry you were hurt. I to have a similar problem. I have been taking care of my mother with alz./dem. for going on seven and a half years now. She is just now really getting bad. I have two older sisters and one younger brother. My brother has been locked up for some time now so I dont cont him in all this. My one sister helps a little when I "try" to plan little outings for me and my kids once a month (when It fits in her time). Then theres my oldest sister. My mother was a very mean and selfish parent raising us. When all of this came to light I was the one she chose to be her guardian. I didnt want to take that on at the time because I knew how we got along and I was pregnant with my fifth child. I chose a nursing home that delt with dementia. When my sister came to help take her to the home she was furious with me for choosing a home that was mainly run by black nurses which messed me up because my husband is black. What the heck? Then after watching her in the home every few days I would visit she seemed so depressed. So I made the decission to bring mom home. When my sister heard that she was so pleased and promised to take mom once a month to give me a break. Well like I said it has been seven and a half years and I can tell you mom has NEVER seen my sisters house to this day. Now she thinks she is doing the daughterly thing by calling every blue moon to chek on her and when I tell her all the troubles we have been having lately and then ask when she is going to take her like she says she will then its sure bring her up here and pick her up too (she lives two hours away) and in the same breath she doesnt want to put mom on her husband while shes at work. Then she continues with "Maybe you should put her in a home where she can get the care she needs. All this time I have had her and she is still liveing I must be doing something right! Never mind that my "BLACK" husband picked up the slack and let me quite my little job to be here with mom. With six kids we dont have the money to drive my big ol suv both ways nor should I have to. She is her mother to. Talk about making yourself sick? I can relate to that as well. I have been on three antibiotics, steroids, albuterol and chest exrays on top of doctor visits after visit after visit and Im not getting any better. Im heartbroken to say I think Im at the end of my rope. I dont want to take this on anymore. It kills me to say that. I dont want to give up on mom. Its taking such a toll on me mentally physically and emotionally. My other sister complained once when I asked her to come and watch mom for "fifteen" minuets so I could run my kids to school. She said to me "That puts my life on hold" I was thirty when I first took over moms care. Now at thirty-seven I can only wonder. Do they even realize how much of my life I have "put on hold"? All my life my siste would brag how she felt family came first. I must have heard her wrong.

Hugs, to all of you!!!

READ THE ABOVE POSTS! READ THE ABOVE POSTS!

AMEN, SISTERS! AMEN!

Thanks - I so needed that this morning!

HUGS TO YOU ALL!!!

It is a fight! Trying to deal with non-rational thinking and unreasonable demands and expectations is frustrating, at best. Not everyone has the compassion it takes to do what needs to be done. It is the emptying of oneself, and giving up of our own desires and pleasures, that wins this fight. But a battle of wills with an unreasonable person is a different story. Here, we are on the grounds of shifting sands, just looking for the rock, and place to land. It is in the midst of the storm we find our weaknesses tried, and must cry out for help. Then God will calm the raging seas. On our own, we just can't control things.

oh my friends, keep fighting the good fight.

What Do You Do?
It seems to be the same wherever you go and with whomever you talk to. Most families have been seriously divided or driven into conflict and chaos over this situation. First of all, it's difficult to watch the mother who was responsible for you deteriorate before your eyes.
As the family communicates to you, you often feel as if you are being manipulated by your mother and your siblings in an effort to hold you accountable and responsible for the care (financially, mentally, and emotionally) of your very sick parents.
There are days when you don't believe that your parents are sick until that moment when they repeat something 6-10 times or they babble some incoherent or irrelevant statement in the middle of a perfectly logical situation.
You gripe, you complain, you search for answers, you pray, you gripe, you complain, you look for a sympathetic ear- someone who really understands what you are going through. In the end you realize that you have reached an impasse. Your parent isn't going to get any better. Members of the family don't want to give up activities, time, or other things that are dear to them. Once they pass the responsibility to you, you won't see them again unless it is absolutely necessary. Friends stop calling or coming over because they don't know what to do, what to say, and are often unable to communicate with, understand, or tolerate you sick parent(s). Ultimately, you find yourself saying "What do I do when I don't know what to do?"
Guess what? God really does become the answer. Not because he comes down and changes the pamper(s) , cooks the breakfast, or dishes out the medicine; but more because He listens and sends a song, a prayer, a verse of scripture, a moment of peace and contentment in the midst of the confusion (for dealing with a person with dementia is confusion).
You struggle with the tears, the temporary moments when your want to give up everything, break up everything, or even destroy everything because you have had enough and it seems like taking anymore is out of the question. Then suddenly, you reflect on the life and the sacrifice of Jesus Christ and realize that He took an intolerable and undeserved punishment by the cruel hands of those who spit on Him, whipped Him, hit Him, and then saddled Him with a wooden cross on which He sacrificed His life for us who are unworthy and "deserving of nothing" (for all our righteousness is as filthy rags).
So I'm saying, cry, scream, yell, jump up and down, but don't quit, don't throw in the towel of life and when you think you can't take anymore- think on these things (For a sinner such as you and I, Christ died and rose again) . Get up, shake yourself, kick yourself if you must - it will be rough but don't you quit. Even though some days may be very dark and lonely - this test and trial didn't come to stay. It came to "PASS". Think on these things: if God be for us, He is more than the whole world against us- You can Make It!!! YOU CAN MAKE IT!!! YOU CAN MAKE IT!!!

It seems to be the same wherever you go and with whomever you talk to. Most families have been seriously divided or driven into conflict and chaos over this situation. First of all, it's difficult to watch the mother who was responsible for you deteriorate before your eyes.

As the family communicates to you, you often feel as if you are being manipulated by your mother and your siblings in an effort to hold you accountable and responsible for the care (financially, mentally, and emotionally) of your very sick parents.
There are days when you don't believe that your parents are sick until that moment when they repeat something 6-10 times or they babble some incoherent or irrelevant statement in the the middle of a perfectly logical situation.
You gripe, you complain, you search for answers, you pray, you gripe, you complain, you look for a sympathetic ear- someone who really understands what you are going through. In the end you realize that you have reached an impasse. Your parent isn't going to get any better. Members of the family don't want to give up activities, time, or other things that are dear to them. Once they pass the responsibility to you, you won't see them again unless it is absolutely necessary. Friends stop calling or coming over because they don't know what to do, what to say, and are often unable to communicate with, understand, or tolerate you sick parent(s). Ultimately, you find yourself saying "What do I do when I don't know what to do?"
Guess what? God really does become the answer. Not because he comes down and changes the pamper(s) , cooks the breakfast, or dishes out the medicine; but more because He listens and sends a song, a prayer, a verse of scripture, a moment of peace and contentment in the midst of the confusion (for dealing with a person with dementia is confusion).
You struggle with the tears, the temporary moments when your want to give up everything, break up everything, or even destroy everything because you have had enough and it seems like taking anymore is out of the question. Then suddenly, you reflect on the life and the sacrifice of Jesus Christ and realize that He took an intolerable and undeserved punishment by the cruel hands of those who spit on Him, whipped Him, hit Him, and then saddled Him with a wooden cross on which He sacrificed His life for us who are unworthy and "deserving of nothing" (for all our righteousness is as filthy rags).
So I'm saying, cry, scream, yell, jump up and down, but don't quit, don't throw in the towel of life and when you think you can't take anymore- think on these things (For a sinner such as you and I, Christ died and rose again) . Get up, shake yourself, kick yourself if you must - it will be rough but don't you quit. Even though some days may be very dark and lonely - this test and trial didn't come to stay. It came to "PASS". Think on these things: if God be for us, He is more than the whole world against us- You can Make It!!! YOU CAN MAKE IT!!! YOU CAN MAKE IT!!!

Been there done that - let it roll off your back ! If nothing else, caregiving toughens your skin a little bit --- or a lot!

Thing is - there was a long line at the post office and I shoulda listened to that little voice inside telling me not to go in- as it turned out, my returned package (my dad's pants, no doubt) was in a priority mail box and I had to repackage it and go to another post office later that afternoon so as to not pay the shipping costs again! GRRRRRRRRRRRRR!

yeah don't you love it when not real family tries to butt in and tell you what to do in life.....that [email protected] never tell me another thing ever! As long as he's been living with her, her mouth was always big big big!

PirateGal, to continue my story.. "that person" who had all the answers was my cousin's husband... again, don't get me started... he also had all the answers as to selling the house and using the proceeds as an investment. I have learned to let his words roll off of my back...and walk on!!!

Or ride on.. wheeee! and leave him at the slow pace of the post office - tee hee!!! I like amusement park rides much better!!! LOL!

Pam....I bet every one of us changes as the needs come and go...like I have stated for myself...a roller coaster ride of life.

Wheeeeeeeeeeeeeee!

;-)

Hey cutie, of course I am done with my mother and sister, there apparently isn't much respit from the care of a parent. You are doing the right thing, get out and walk and know ultimately at the end of this process you will be proud of yourself. ShelleyAnne

Giggle...who the heck was that person?

That's what this posting is here for - to get us started venting and head us in the right direction... I have had to refocus and regroup time and time again. Thanks, fellow caregivers, for pushing me along!

Been there done that. I won't get you started!!!! :)