Sorry about the misspelling. The word "who's" should be whose.

One reason people may stay away from a person who's physical and/or personality has changed is, as my SINL said one time "We don't want to see him like that"! My response is "Do you think he wants to be in that situation?" I know the pain of watching a loved one decline in physical or mental health & I wouldn't choose to be anywhere but at their side as they experience another chapter in their life. I have thought that people would do better in relationships if they concentrate on each other instead of themselves. I will pray for you, Sooz, & your family. You are so blessed with your amazing husband & wonderful, caring daughter & they with you.

From everything I have read and gone through first hand I have come to some conclusions. First off , I think a lot of people DO have an idea of what we are going through and are terrified of being pulled into a vortice of pain. Self preservation-running from that giant saber tooth tiger.
Our journey is for help and affection FOR our loved one,as well as our own health and sanity. So make a list of true needs. Before you can get a day off you need to ask for or direct to the small things-but never the less true crosses for you. Ask for that which you most need and why.
For me the first step was getting one member to go with us to the Dr. after I explained my extreme fear of losing him in the parking lot,trying to park and get us in..She has helped out now about 6 times in the past 10 months. Great!
My stepson understood and brought his dad a box of chocolates and visited for a little bit. Yeah ! But sometimes they just don't get it you have a need NOW not next weekend-so when they do communicate in some way- you may have to see them at a coffee shop for a bit without the person you care for.
When I do write up a full plan I will get back and write it up.
God bless you and may angels be at your side

Thanks for your posts. I only have one friend that checks on me periodically and willing to hang out with me to talk and stuff at least every few weeks or so to run errands and get a break from the house. Have one girlfriend that takes care of her mother. That's it, but am very grateful for both of them. Cannot stand nosey people that are totally clueless and rude to think you "have it made" and are out to take care of your parents for money or anything else but from the kindness of your heart. What a load of crap ! The crowd that my girlfriend and I used to hang out with kind of totally dissed us and never call to check on us or ask how we are or see if we need help or a "friend". Then my brother calls and fusses at me about being broke and supposedly not doing enough to help my dad with my mom. She is totally bedridden and incontinent now with a colostomy and several other health problems. Think she had some seizure activity or possibly a TIA over the weekend, so now lost the ability to feed herself again and her memory and coordination is very bad now. My dad gets real emotional now, too and a lot of hollering going on sometimes when changing her bedding, etc. Guess that's just old people for ya. Sometimes don't know whether to want to cuss from the frustration or cry like a baby. Just want to get through the holidays without another trip to the hospital if that's possible and hold on to what's left of my sanity and friends.

Cat, it is amazing that you mentioned cards. I cannot even receive a card from my oldest son and I don't even have Alzheimer's! These kids today think you can text a belated happy anniversary or birthday and it's okay. I want to do the same thing as you mentioned...buy a bunch of cards addressed and stamped and give it to him for Christmas but instead I am going to get a sign made that reads, "If it's not about me, it's not about anybody". He has a narcissistic wife too. I cannot believe he came from my womb.

When our family was caring for my mother-in-law who had Alizheimers, it was like pulling teeth to get her other two adult children to visit her. When the daughter came, all she did was scream at her and the son didn't bother at all. Now my husband has a different type of dementia and his family wants nothing to do with him. Thankfully we have close friends and my family who visit and help out. There is nothing you can do to get people to visit if they don't want to. I will usually call people when I want to talk to someone. I think most hold off on calling because they don't know if I'm busy tending to my husband. So, I call people a lot and set up outing for when my husband is in daycare.

i am albbac 100 my husband died 1-8-11. the heartbreak of my life. For all of you still out there caring for loved ones, i wish you all the strength and energy you could ever need. you are all in my thoughts. love deborah

2 things come to mind: First, you have to take PRIDE in what you're doing. Too many people look down on others taking care of an elderly parent who can't take care of themselves.

We've all seen the "big, dumb mama's boys" who've never married or moved out of the house and lived on their own. (and God help you if you're parent's a domineering jerk)

Many of us have given up our lives (job, school, money, respect, social life, dating, fill in the blank) to take care of a family member and it's too easy to lose morale.

We can talk ourselves down enough as it is! We don't need anyone else's miserable help!

Second, our need greater than their supply, so cut them some slack and get tough!

Let's face it, if one of our friends was in our shoes, we probably wouldn't be hanging around them either. Our burden is like a giant black hole that sucks everything and everyone into it that gets near it.

If you are lucky enough to have a friend or another family member that's willing to help, try not to lean on them too much lest they be as overwhelmed as you are. And don't whine and complain to them! Do it here!

1/11
what do you do if the love of your life has a contagious disease and is in isolation at hospital and the md wrote a hospice order. they dont take patients in isolation. i wanted him to come home anyway. my wonderful daughter and her husband have a 2 and 4 yr sons. they are too young to be exposed to this

thank you anne and dtflex . yes we cannot find solutions to most our difficulties but talking about them and hearing others share them in many ways is helpful. i don't know why but it is.

Anne, I've had the same response from friends at times too. Or those that have already lost their parents will say "Well at least you have your mom still". This is true but none the less stressful. Yes, thank goodness for this forum for us to share our challenges with people who understand. Thanks to all the fellow caretakers out there.

I have found that oftentimes, if I try to talk to friends or family about the stress that I am under due to caring for my Dad, they will sympathize with my father, and not see the burden that I am shouldering. And then I feel ashamed for having revealed my "weakness" to them and for having complained. I have noticed that particularly family members who are the same age as my Dad ( ie- his peers) will sympathize with him over me---saying things like: "This has to be so hard on him." etc. So now I don't share my inner struggle with anyone except God, my husband, and a couple trusted close friends. This can be a lonely struggle, it's true. That's why internet forums like this one are so important and helpful. Hang in there!

right on . nobody seem to understand that caregiving is a full time 24 hr job. if your not directly caring for you are cleaning up for or after, getting some sleep or worrying about how everything is going to get done.

Friends are few and far between when you are a caregiver. You say it is fear of the future? I'm not so sure about that. It's just like being a new parent. All your single friends disappear and you only have friends that are new parents. Only probelm with caregivers is who the heck has the time to "socialize" with other caregivers. We are so busy trying to keep up with all the demands we can only think of having a good nights sleep and some peace and quiet if we get some repite time. Maybe I'm just fed up today but I find myself feeling this way frequently.

Del: my heart breaks for you in these difficult times. There is alone and then there is ALONE. I have often said, on this site, that when an emergency happens, family members either step up or step way back. Sounds like most of your fam. is stepping back.
Have you considered gathering all the clan together and articulating, very clearly, your needs. The reason I say that is because my Mom (83) is very fond of saying, "well, they should know that I need help; I shouldn't have to ask them." Which translates into me doing everything right now. My sib. will not even visit - which my mom blames on his wife (by-the-way, "controlling spouses" are a cop-out. If family wants to be involved they will not let anyone stand in their way.)
I worry about this generation of "helicopter" parents who want to cling onto and do everything for their children, not ask anything in return, then expect them to become good caregivers. Like everything else in life, learning to share and give has to be taught, modeled, and reinforced.
If everyone has truly abanoned you two, I would suggest that it is time to take care of your own mental health. Do you have opportunities to get out, while the caregivers are visiting? take a day to do the things you like to do? join a social group? volunteer short term? take up a hobby? read? garden? do anything that is not related to caregiving?
See, there are many things that you can do to bolster your spirit. Right now you are feeling isolated (and rightfully so) but you are so much more than "just a caregiver." You need to re-discover yourself. Please trust me and take just one small step - you will feel better.
Good luck...

sooz you sound like your situation is so close to my own. rejection from our children is very sad and hard to bear. my husband cannot tell me how he feel about never hearing from them as he cannot talk. but his sadness is probably the same as mine . we too also had a v ery active social family. sunday meals. holiday parties for families as they grew up got married and had children. when dick had his stroke i thought they would all help. the basic attitude i got from them is we are busy and would rather you pay someone to help you. i am now being forced to pay for help as i cannot do anymore but the loneliness and abandonment from those you love and thought loved you is heartbreaking. you keep asking yourself what did i do wrong in raising my children that they do not seem to realize that i as dad's caregiver am completly alone . my husband is unable to show any affection or gratefulness for his care so i am isolated and feel very unloved by anyone most of the time. i say stop feeling sorry for yourself but after 11 years i am beginning to realize therei is no self left. i even doubt my own self worth for anything but caring for my husband. hope is very low in my mind right now. i see no out for either of us its hard

I have two girls. They are 10 years apart. The one that will be 22 in December, has a great husband and my yummy grandaughter. She how ever still treats her sister like she really does not want her in the family.

Courtney, is my 12 year old and both of my girls were raised in the church. I may have overcompensated due to Courtney's father died when she was two years old. Nicole the oldest always tells me how she cannot wait to move away from all of her family. I am at the point that I would pack her, but stow my lovebug at my house. LOL Courtney, will be in 7th grade next year and every year her teacher's tell me how she is always the first one to lend a hand to another student in need. I am so proud of her. I just pray we stay on this road, Nicole wanted to become a missionary at one time in her teens. Kids? Who knows sometimes you have to reach bottom to see what you have been doing.

But you are right don't worry about the bad consitrate on the good. They will be in agony (SP) in the end. You and your daughter will be able to hold your heads high, knowing that you did the right thing!

love,
Susan

hi, susan and cat. thank you for your thoughts on our terrible ordeal. my sweet and adorable husband is very aware of the neglect shown by his sibs and 2 kids. i guess thats what makes all of this so heartsickening. the sibs are just gone forever i'm afraid. our 2 kids[in their 30's] are totally hateful and jealous of their one [middle] sister and the fact that we did a simple and legal saftey precaution by putting her in charge of our finances some day. called executor. she is kind, fair and intellegent. they are DONE with both of us "forever" they said. their hate and anger is definately taking its toll on me. my hubby was having a really 'good' day yesterday, so i brought up the 'difficult subject of the 2' and he said he does NOT think of them much anymore and that i should just do nothing and let it go. he is so brave and good. i love him SO much. we have 1 really good and kind daughter. we will just focus on her and her wonderful family. but i will never understand how 2 of OUR kids who grew up knowing compassion and living it daily, can turn their backs so easily on their perfect dad, for such a silly reason. they both married the controlling type people....possibly thats why. thanks again for all your kind words. sooz

Thank you for answering my plea for help. How are things going with your hubby and the sibbs? I hope and pray better.

I love you and will continue to pray for you,
Susan Myers

Cat I just love you. Keep on venting girl. Maybe someone out in the real world will get the message!

Susan

You are right about people who don't understand - and just when you think somebody does, you get surprised by urban legends that really do caregivers a dis-service.

Today one of my neighbors caught up with me for a sidewalk visit and in the course of the conversation said he thought I "had it made" - believing that some magical government program is *paying me* to take care of my mom. Now I guess I should take it as a compliment that it appears I don't have a care in the world. My hair is brushed, I know what day it is and I am still coherent after having spent the morning cleaning up poop. I will admit, with technology you can work from home and take care of a parent, so i might appear that I am just sleeping in and doing my nails. But as a single woman who carrys the whole load, it frustrates me that there is this widespread belief out there -

it seems as if these mythical programs such as "paid" caregiving and tax credits only serve to salve the conscience of people who don't want to acknowledge that in our country we have very few programs that adequately address the issue. The few dollars that medicaid programs pay are less than a livable wage in an economy that has $4.50 per gal gas and skyrocketing prices...in housing, food, healthcare - you name it.

Since I am venting I'd like to say that by careing for my parent for free, the government saved $360,000 so far.....I wonder what would happen if EVERY caregiver in the US stood up at the same time and said the same thing. Would it get anyones' attention?

of course we as a group won't - because we are tired and busy....we do take care for our parents / spouses / loved ones because we care - we dont' want people's pity - we are strong and when it comes down to it what does money really matter when we have love and the feeling of having done something good

which is fine and dandy .....except we still deserve the RESPECT that comes with making this decision and performing multiple functions that a whole slew of professionals went to school to learn how do. Maybe we should be awarded honorary degrees - I sure feel as if I have earned my masters in dementia caregiving....

I hope that one day we all do stand up - a virtual million caregiver march that gets the same media coverage and attention of the general public that each celebrity du jour or sports team gets....

Thanks for listening - it reminds me of that old movie Network where everyone started yelling "I m mad as hell and I m not going to take it anymore"

thanks for listening - I feel better alreay - glad I can vent here.

I love America, please do not take this the wrong way, but when it come to how so many treat thier elders it makes me ill!!! These people are not to be thrown away or over looked. The people we care for have cared for us in one way or another. Yes, they may have made mistakes, but who here has not? Surely not I.
sooz - I know that you are mad with the child that has no heart, but the lady that you have with you, still has the love for her child. Does she not? I believe that I would fake cards to make her smile. I have a brother that will not call our mother to let her know that he is okay. I have a great deal of rage in my heart for him. I have watched what she has done and given up for him. But, if I can pass a little white lie by her and say, hey guess who called to check on you, but you were resting and he did not want me to wake you. I will continue to do so. It gives her a little bit of peace. She even had a legal document that he was to take care of her for the rest of her life, because he bought her house. The house is gone and so is he. Cest la vie. I do not care about him, just her!

And as for the people that don't understand what we do or why we do it, well I feel very sorry for them. I don't believe that any of us have to prove ourselves to anyone. People today have forgotten to teach care and respect. I am old school you take care of your own. If they don't get it then I don't need them. They will never understand the depth of a true love. @->--

Love,
Susan

well, here's another thought. neglectful child keeps distance for 9 months with nothing acknowledged. healthy parent says 'no card for birthday as i would be enabling your neglect towards her to open and read it. stop in to say hello for a few minutes, ONLY'. does neglectful child have any legal grounds to sue healthy parent for returning a card unread to sick parent? as a caregiver, are there any rights in deciding what to do about bad kids and making decisions about the ill spouse and the lack of personal contact with them. bad kid lives 11 minutes away. any attorneys out there? PLEASE answer. - sad parent

thank you, wright

Has anyone else run into family members who no longer bother to send
birthday, holiday cards to their parent because they don't think dementia patients will notice. Human nature continually surprises me.

I sent a package of cards for the whole year with postage on envelopes to one relative that I thought would be willing to sign & send - no go.......guess I'd rather laugh than cry.

Believe me I understand what you are going thru. When my mother was a vibrant, social, happy person, the whole family would be around. We have a very large family, but now that she has alzheimers, it's like she is contagious. It's lonely for those of us that watch and care for our loved ones. Just note that you are not alone.

my paralyzed hubby has 6 siblings. its been years since we've seen any of them in spite of my begging with a happy smile and a home cooked meal offer. i have 8 sibs, and its even longer since we've seen any of them. even my parents stayed away. and i'm a good and happy cook in a clean and pretty home. everyone loved my husband, before. now all these years later, our 3 children are in their 30's. 2 of them haven't come to see their dad in 9 months. no christmas, no easter, no mothers or fathers day, no birthdays. NOTHING!! and they well remember the pain of absentees we all felt for so many years. now, they too have followed the[ lack of compassion]path. i am convinced compassion is not taught. its something 1 in 50 is born with. that makes a very sad world.