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I feel like they think I will ask them for help. People from large families have alot of help but when you are on your own you have to pay for all the help.

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I am answering this question in light of my own experience as a retired oncology professional. When people are ill with dementia, cancer or any other debilitating disease it is difficult for certain people to be around them because they are uncomfortable on a number of levels: 1) they don't know what to say. 2) they can't bear to see the person in such distress. 3) they are uncomfortable with the idea that they themselves might be in that position some day. 4. they feel inadequate. I have a mother who is in assisted living due to having moderate to severe dementia. My sister and I are the ones who go several times a week, visit her and tend to her needs (financial, medical, etc.) Our other siblings readily admit they can't go because they can't stand to see her like she is; they prefer to remember her like she was. I'm sure one of the above reasons apply to them. I've given up being angry or expecting help because it has become a useless emotion that had me physically ill for months and robbed me of my own happiness. My focus has become solely to do what I can for mom.
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rioblu~unfortunately some people just don't know how to be supportive. Maybe it' s because they are not actually caregivers so they don't understand what is involved. I wouldn't share with them. Share with your friends that you know are there for you and share on this sight. On this sight you will meet loving, supportive people. We are here for you♥
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Dear Bookworm--
You are doing a very noble and loving thing for both your parents, and God will surely reward you greatly ... if not here, then THERE. The Old Testament specifically (in the book of Sirach) tells us to take care of our elderly parents, and not resent them for being old, needy and perhaps less than lucid mentally. Taking care of our elderly parents when they need us most certainly scores us points in God's eyes ... and He sees all. It can be isolating, depressing, and we feel that we've "checked out" of our own lives. But that only lasts for awhile. My elderly dad, whom we'd been caring for at our home, has just become seriously ill with COPD (brought to a crisis by pneumonia) this past winter, and it looks like he won't be coming home again -- his care regimen is too constant, and complex for us to handle here. His memory has diminished greatly. I've lost my "buddy" whom I would talk to constantly, take on daily errands, and have as my parental support and confidante. Our parents are a gift to us in their old age....let's look at them that way. And yes, friends, siblings and relatives skidaddle when we have an elder living with us. Who know why? Some are selfish, don't want to be bothered, and don't have a clue as to what goes into caring for them. But their day is coming. And their kids have their 'selfish' example to follow.
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I understand what you are going through. I am the only living child to help my Mom and had to cut my work earning hours in half to help her four years ago. My savings is nearly gone. I too am alone, and although I don't live with her, I help her almost daily fixing things or scheduling repair people, driving her to the doctor, shopping and cooking for her. I had severe love/hate issues with my Mom which made our relationship difficult, even before, she got sick. Resentment quickly set in when I had to help her, and it was obvious she still didn't appreciate me. The Lord has helped me deal with this, but it took time. As one of the other responders noted, your rewards are in heaven. Believe it or not, this will make you stronger for the plans God has for you, after she is gone. I too wanted to die. That's when God reminded me that I was not alone. He knows the worst of pain. His comfort is all I have some days. With that said, get some counseling through your local church. Also, call "Meals on Wheels" if available in your town. I don't know if they'll deliver if you live with your mom, but definately check this out. It saved me hours, and my sanity, not having to cook and shop. I fill in with fresh fruit and veggies and fun food, but their meals are so nutritious, and, you don't have to be low income to receive it. Plus, it's free, all run from donations. For others who may read my comments, and can relate to having a rocky relationship with your Mom, maybe she isn't/wasn't the mother you thought she should be. Try talking to her about her past. It will be very enlightening for you. You may see what made her who she is. Don't judge, just forgive her, accept her, and hopefully you will even tearfully grieve the parent that you always wanted but did not have. This process is very healing, and important to do as a mother or father nears death, for your sake, and theirs. The truth is, unfortunately, some mothers are Narcissistic. Get the book by Karyl McBride, PHD "Will I Ever Be Good Enough" Most importantly, run to God for comfort, and know this won't last forever. Having a sense of humor helps too. My best to you and God Bless you.
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Why people don't associate with us when we are caregivers? Probably basically they don't like hearing about it. It worries them about their own situations. So have acquaintances with whom you do not share your caregiver woes, or you own physical or mental woes. I do the best I can to compartmentalize. If someone inquires, I'll share a humorous story and then change the topic. Actually I think it's good to have friends who don't want to hear all about my care-giving activities. I talk about other topics with them such as dogs, or gardening, or crochet or politics or even religion!
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Because they are "so called". I have experienced this. And have had friends stick by me through thick and thin.
My "so called" friends lost a mother about 2. Years ago. I was there for them and her even while taking care of my mom.
We are still friends, but I see them in a different light.
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Same with me, friends quit calling.no family at all. I am 63 retired nurse from hospital and have mom in home last 2 years. I don't mind doing everything for her. She is probably stage 5-6 . The emotional part is the worst. I feel like I lost my health, heart stent when I retored. Then my pet dog of 15 yrs, then my brother passed 2 yrs ago and left all money to his wife and now ii am losing mom. Sometimes I wonder if I will want to live at all when mom is gone, if I don't go first
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A relationship with friends is two sided. They share with us the things they do and we share with them. We go and do things together. When we enter the role of caregiver for many of us our whole lives change. There is no going out with friends anymore, there is nothing to talk about anymore from our end because we're so limited, we do the same thing everyday, take care of Mom. Heck, I'm bored stiff, I have nothing to share with my friends that will allow the friendship to grow and flourish. It isn't really our friends fault or our fault that friendships falter it just is and someday when our role as caregiver is over maybe we'll have an opportunity to rekindle those old friendships and make new friendships.
Don't be too hard on your friends.
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I agree both of the above posters. When my husband was diagnosed with PD, we'd been declining invites for about a year. With the diagnosis, people immediately thought of Michael J. Fox, saw he was active and assumed my husband would take some meds and be back to himself. So they couldn't understand our declining invites because of PD issues. I admit to being hurt for him that they could so easily fade off. But I've since realized that with most friends , you have to feed the friendship with shared time and activities. The friends who are good with the bits of time you can share are usually the friends who've been caregivers and "get it".
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rioblu, I have 7 sisters and brothers. I'm now 46 years old. When I was age 23, my mom was beginning to show signs of dementia. My dad had to do early retirement to care for her full time. At that time, I got a job as a travel agent. I had dreams of travelling all over the world. My goal was to move to the states, and take advantage of all these air/hotel weekend getaways to Europe. As my mom progressively got worse, it was only me and dad caring for her. Mom became wheelchair bound, then bedridden. Still, just me and dad. Yes, we asked for help with the other children (my siblings) but...they have Their Own Life, Their Own Family, Their Own Bills, etc...Mom was me and dad's problem. I remember the day when I finally realized I will never fulfill my dream. I heard a plane flying overhead. I looked up, and I just started crying....

Last year, dad had a stroke and he's now bedridden. At that time, I thought, Now the family will help. I have begged, asked, threatened to leave, how my doc said that I am now a high risk for heart attack, threatened to commit suicide...No help -physically. I was promised that my adult nephew, his girlfriend and son will move in. Nothing.

This year, I just couldn't handle it anymore. I stopped talking to the family (all my siblings got the talk/email) about suicide. I had finalized the details - down to When, Where and How. I figured out how to do it where my body would be found, etc...I don't know...but I truly believe that God had helped me to find this site. (It never fails in the past years, that when I have decided to kill myself, friends would suddenly drop by...and I end up venting to them of my stress with caregiving.) I happened upon this site on a Friday. Three days later, I decided that I wanted to die. I remembered this site and how encouraging everyone was, so I got on and posted. It was the people on this site that helped pull me out from the deep dark tunnel where I thought I had nowhere to go but death. Now, in turn, I try to help others like me who needs encouragement.

rioblu - I have 7 sisters and brothers. 6 of those makes much more money than I do! They get to travel every year! But...sigh...just because a person have a large family does NOT mean they will help!

Oh...if you do ask them for help, they will do it one time and then after that, you can't find them easily. (In other words, they will avoid you...fam does that all the time.) I have friends who think it's easy for me to find someone to "babysit" parents so that I can come to their function, etc...And I do my best to avoid them!!
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