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My parent moved in with my husband, daughter and I 8 years ago because my mother's medical costs left them no choice. My mother passed 3 years ago after a long illness of COPD and emphysema during which time I was her main caretaker plus working full time. My father is 93, in good health and still is with us. My daughter is a senior in college and this arrangement has been going on through her entire high school years as well as all of her college years. I come home and have no privacy, no room to have my own life at all. Every decision is driven by the fact that my father is there and he doesn't like it when we go anywhere. If we do go to a movie or dinner we feel obligated to ask him along since he doesn't have anyone in his life but us. I guess I am just exhausted at this point and depressed. I find myself just not wanting to go home anymore. Both my husband and I have pretty high stress jobs so it's getting to both of us. I know there isn't anything that can change, I just need to vent somewhere because at this point every time I leave the house I am in tears. Eight years is a long time and the relationships with both my parents have never been great.

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You have done a great deal. If you father doesn't have much income, he could qualify for Medicaid. Please consider calling Medicaid and seeing if there is a way he could be with others his age and give you some space. He has no one but you, and that's not fair to him or you.

Each state has somewhat different Medicaid rules, but there may be an assisted living situation where he could be with peers, or else maybe you can get some in-home respite help.

Please check it out.
Carol
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DEPRESSED DAUGHTER/CAREGIVER,

TO ONE CAREGIVER TO ANOTHER CAREGIVER,

YOU ARE ALREADY BURNED OUT AND YOU ARE RUNNING ON RESERVED ENERGY. I'VE BEEN TAKING CARE OF MY MOTHER WHO IS IN ADVANCED STAGE OF DEMENTIA AND SHE LIVES WITH US.

MAY I GIVE YOU SOME HELPFUL HINTS.
1. YOU SHOULD JOIN A SUPPORT GROUP.
2. TRY TO ALWAYS GET A GOOD NIGHT REST..VERY IMPORTANT, BECAUSE WHEN YOU HAVE A GOOD REST YOU CAN THINK BETTER.
3. WHEN YOU FEEL THINGS ARE GETTING OUT OF CONTROL. JUST TAKE SOME DEEP BREATHS GO FOR A SHORT WALK. DON'T GO HOME RIGHT AWAY TAKE 15 MINUTES FOR YOURSELF, GO TO THE PARK OR THE LIBRARY JUST DO SOMETHING FOR YOURSELF. WHEN YOUR MIND IS CLEAR & PEACEFUL YOUR STRESS LEVEL IS REDUCED AND YOU CAN DEAL WITH THINGS BETTER. THESE ARE SOME OF THINGS THAT I DO AND THEY WORK BELIEVE IT OR NOT.

AND NEVER EVER BE HARD ON YOURSELF!!!!!!!!!!

HANG IN THERE
PHYLLIS FROM NY
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From experience I would say maybe it is time to just say I can no longer do-believe me the sky will not fall-as I have told here before I kept waiting for someone else to make that decision and my counsular told me I was waiting for someone to rescue me and it was not going to happen so one day in a family meeting when he was in rehab I just said it-I can no longer do this and guess what everyone agreed with me except the husband and from there we planned placement instead of discharge and about 1 week later he called me and said he did not think he could go home, he died about 2 weeks later. It really sounds like you reached that point a long time ago discuss it with your husband and daughter your father will pitch a fit because everthing has been about him for a long time but he will get use to it probably quicker than you think-your husband and daughter and YOU deserve better do you know what percent of caregivers die before the ones they are caring for a lawyer told me 60% that got me thinking seriously 16 years was enough and things got worse after I retired because of MY health so do not think that if you gave up your job things would be better and you are not responsible for his expenses a spouse is but not children run do not walk to an elder lawyer and get things started and you will feel better I did even though I was going to be left with very little money and very big debts-please think about this.
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Place him in a facility where he c n get care. He probably qualifies for medicaid. Do your research, make the calls needed to get the info and give your family and yourself a break!!!
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God help me if i have to do this for 8 years. I have been doing this for 4 years and we both feel the same way. My mother, God bless her, did pass away before my dad with ovarian cancer. It takes a toll on my husband and I, but i felt so bad when i put him in a home for 4 weeeks on and off for respit. Now that i have him back full time, I am exhausted and streessed to the hilt. I on the otherhand have a full time caregiver. But, i know the feeling of being trapped. I cannot go anywhere because of his poor health. I feel like I need to be there for him. Everytime i leave, even for a wekkend, something awlful happens. We all need a break! Do look into medical, If she earns less than 2000.00 month. She can qualify for IHSS. As long as no money in the bank etc. kd
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Hi tatayaya,

Please take care of yourself. I have been doing elder care for my father for 3+ years. It has taken a tole on both my physical and mental health. I believe the stress played a major role in my having had breast cancer, and everyday I feel like a nervous wreck. My father won't go to our nice senior center, he just wants to stay in the house where he constantly is either staring at me out the window if I try to do anything in the yard, or if I try to go anywhere, or he is asking the same questions over and over, "Where are you going? What are you doing? etc, etc, etc.". I have no privacy unless I hide out in my bedroom upstairs (we have told him the upstairs is off limits, but he still has gone up there on occasion), so now I don't feel like I have any privacy up there either. I feel like I am a twitching nervous mess, and that my father will out live me due to the stress he is causing me (he is 84, and I am about to be 53). You have done so much. It sounds like it is your turn to be cared for.
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When my mom asks me where I am gong I simply say "Out". I never tell her where and so she stopped asking. Got the message. I have a caretaker who comes about 24 hours during the week. I go out, have lunch and shop. It is none of her business where I go and with whom. As for upstairs, put a gate and lock it. He should get the message then. I know, I sound harsh, but everyone who comes to this site knows that " boundaries" is my favorite word. We must set them if we are to survive this phase in our lives and that of the ones who we take care of. It has been 4 years for me and I am looking at about another 3. If we didn't make time for ourselves, especially on the weekends, we would have gone nuts! Take care of yourself, because, NO ONE ELSE WILL!!!!!
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Thanks so much everyone for your feedback and caring stories. It always helps to not feel like you are the only one feeling these feelings.
Mactavish, I identified with your feelings of no privacy. My father lives in an apt attached to our house so there is a door between us but he just comes over whenever the mood strikes him and we have to end whatever conversation we are having because he pays no attention to what we're doing, he just interrupts and starts talking. He is totally dependent on us because his friends are all either dead or sick and don't live near us and so we are it and it leaves me wrecked with guilt when I am at work or god forbid, go visit a friend for dinner or something.
I often wonder why he can't just say, it's OK, I will call you if I don't feel good, or to say, no, could you stay home tonight, I really don't want to be alone...I prefer honesty over the martyrish responses such as "ok, you have a good time" with a look of disgust on his face. He is 93 and I just turned 56, it's crazy that we can't have a more honest relationship but I just keep taking bubblebaths (he does not come in the bathroom) and praying for patience, love and understanding. I know the day will come that I will miss him, not the caretaking part but him as my father. Thanks again for everyone's responses.
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FOR THE ONE WHO IS CARING FOR HER FATHER 3+YEARS PLUS. IT WOULD BE VERY HELPFUL TO YOU IF YOU JOINED A SUPPORT GROUP. YOU NEED TIME FOR YOURSELF. YOUR FATHER IS NOT GOING TO LISTEN TO YOU ABOUT GOING UPSTAIRS BECAUSE HE HAS DEMENTIA. AND HIS HOME IS HIS SAFE PLACE THE SENIOR CENTER HE IS NOT FAMILIAR WITH THAT PLACE. MAYBE YOU CAN REACH OUT TO THE ALZHEIMER'S ASSOCIATION.

I'VE BEEN TAKING CARE OF MY MOTHER WHO IS IN THE ADVANCE STAGES OF DEMENTIA FOR 10 YEARS NOW...IT IS DIFFICULT AT TIMES BUT THEIR IS ALWAYS THE NEXT DAY. AND I CONTROL THAT AND I BELONG TO A VERY NICE SUPPORT GROUP AND I HAVE A GREAT FRIENDS.

TAKE CARE AND I'M PRAYING FOR YOU
PHYLLIS ANNE, NY
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lovingdaughter, Hi,

Yes, I have definately gotten to that point, where when he asks me questions, I answer in very short statements like, "Don't know what I'm doing today", etc. The problem with that is he will come back in the house after I go upstairs, and question my kids (19 & 20) about not only what I'm doing, but what they are doing. They feel sorry for him, and usually tell him what I'm doing. I literally try to "sneak" out of the house but he always manages to hear me and come out front to see what I'm doing. The gate may be neccesary. We have talked to him about the danger of falling, and the fact that all that is upstairs is bedrooms, which are private. I've told him if he needs something to come in the house and call out. I can hear him fine. But he has still ignored what we have asked on a few occasions. We have always given him privacy. He has his own suite which is attached to our home. He has a very large bathroom, kitchenette, tv. and recliner, and large bed. He has a door out onto our patio, where he could take walks. But the only thing he does is constantly watch me. I have no idea how long this could go on. At this point, I know his health is better than mine. I think I am going to sit my kids down and try to make them understand about not answering his questions, that it is only enabling him to focus on us, and make excuses for not doing anything else.

tatayaya, Hi,

I totally understand. My father's "suite" is attached to our home. His interior door comes into our laundry area, then into our home. We have never just walked into his room. But he can walk into our home anytime he chooses. I finally asked him to not come in between the hours of 9 p.m. and 9 a.m., unless there was an emergency, so we could have time to get our chores or whatever done. He still doesn't get it. He will still come in, asking where someone went, cause he heard their car leave. I guess that's his idea of an "emergency". I use to have a close relationship with my father, but now all I feel is tired and annoyed. Thank goodness for those locks on bathroom doors, that is the one place he hasn't come in. Bubblebaths sound like a good idea.

phyllis55, Hi,

You are right, he does have dementia from his nervous breakdown. My prayers are with you that you have been doing this for ten years. And thank you for your prayers. I really don't know how much longer I will be able to do this. A support group does sound like a good idea. When I try to explain it to my kids, sometimes I feel like it just is not getting through, and that they can't understand how I can feel this way towards my father. We have all been so close over the years, but he is not the same person he was, and his care has effected my feelings towards him. Of course, that sends me off on another guilt trip.

***I have spoken to my two brothers that live out of state. I have told them that I need a break from this. There is also the fact that my daughter just got engaged, and will be getting married next year. She will then move out of state. I told my brothers that I want the time to spend with her and enjoy planning her wedding. I have told my brothers that I need my father to leave for a period of at least six months. Having him stay here and just getting another care giver will not do the trick. So, we are looking into possibly moving him down (about 45 minutes away) to his house, and finding someone that could provide some assisted living care for him there. The constant fear is that any change that he doesn't like may cause him to have another breakdown. I can't go through that again, and I know my brothers can't either. But, I've finally gotten to the point that I told them we have to do this no matter what. So, just keeping my fingers crossed that everything will work out. But, I have to admit, that when the time comes for him to move back in with us, it is going to be hard to have it go back to being how it is now.


I wish I could wave a magic wand and send all of you Ladies on a long deserved dream vacation.
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This may sound harsh. But , once you move him, do not move him back. This is for his sake as well as yours. Patients with Dementia do not do well if moved too much. He may just be better to be placed, get him comfortable and then not move him again. As for now. Can you get a baby monitor? We have the monitor in mom's apartment and the receivers in our kitchen and bedroom. I can hear her no matter where I am in the house. You can hear him and that may give him peace of mind. Does he have a life alert system? This great. We have had to use it when she couldn't get out of the bed one night, and I didn't hear her. Scared the dickens out of me, but it worked great.
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I don't have much faith in monitors (long story, has to do with what happened with my mom). He does have his own phone so he could call us, but perhaps we will have to think about some other things. He does get around ok, in fact sometimes he can be very quiet, he likes to eavesdrop. And, yes, I have thought that I would like him to be cared for elsewhere. Maybe if he wasn't always spying on me, I could get back to feeling the way I use to about him. I've told my brothers I want the time from May through October. Right now, May seems a long way off.
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I thought there were 'adult day cares' out there. I know I've seen them in my area, where you can take an older person and leave them for a few hours or whatever during the day. They do crafts, brain exercise type games etc. It's worth checking into.
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naheaton, Hi,

We do have a really nice senior center in our area, but he's not interested. I do think it would do him alot of good, and help him to stop focusing on me. It may have to become something that we "push" him into doing, and see how it goes. Thank you for your suggestion.
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Mactavish You need to think about how this affecting you and your family-it has allready affected your health there comes a time when you just can no longer do it and when you do you will probably get a lot of support he needs to be with others his own age and you need to get back to a normel life-you will still be a big part of his life you will be able to visit I have often said the best nursing home is the one near where you live so you can go in often and you would be able to bring him home for a few hrs. or even overnight if you want and take him out for ice cream or such you certainly have done more than your share you need to give yourself permission to have others care for him now or he will outlive you he has no stress you do and most elders adjust very well to nursing homes my husband was in rehab about 15 times and one day I told the social worker I could no longer do it my husband pitched a fit and the social worker told him I did not stay 25 while he got older I also aged and I got a lot of support after I spoke up-it was hard to admit I had reached my limit I had thought I was the only one realizing this at the time.
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Mactavish,
Austin is right. Take care of yourself so that you will be there for your dad when he needs you. Let others take the burden who are trained to do so. It is OK. Give yourself permission to be human. We ALL have our limits. Remember, we are here for you.
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my friends i know how you feel and its hard when you give up ur lives for so many yrs for ur love one i understand totally but you half to have some me time like others said join a group have ur love one go to a day care for adult.i didn't have to do this with my dad cause he felt he could be alone and half the time he wouldn't go with me but he nevered got upset when i did leave, he was a calm cool alz patient and i enjoy him til the end and trust me i work with them and i know how they can be but do try and take some time out there are services out there that will help you
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Dear Give a hug,

I just love how you described your father, I never heard it put that way "calm cool alz patient" I hope God is blessing you with good life after taking care of your father. I've been taking care of my mother for 10 years now....she is so precious.

Have a great Thanksgiving!!

Phyllis Anne
NY
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Caring for a person with Alzheimer's can be exhausting and very difficult. It's wonderful when people can get some help so they can find a little balance for their lives. It's good for them and good for the care receiver. We are better caregivers when we get a break.
Carol
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yes phyllis
my dad was a calm cool alz patient he never gave me trouble but i have to say my dad has been like that pretty much all my life it took a lot to make him mad...and trust me my mom was a hell cat..i know . but my dad let her have her way quite bit just to save face...now there was time he did say no and meant it but when you have 12 children sometimes it can get to you but he was never a mean man and was quiet and thats the way he was and was funny too as a alz patient he made me laugh like he did when i was little but as a alz patient he knew something was wrong with him, he ask me several times and i explain it to him i told him that his memory has taking a toll but his humor was with him always..i miss him so much as well as my mom and these holidays are very sad to me, christmas was moms and thanksgiving was dads he love the togetherness of a family..but if he knew what was going on, boy he would be really sad if their not already
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DEAR GIVE A HUG,

YOU SEEM LIKE A VERY LOVELY PERSON, AND I CAN TELL YOU YOU DID YOUR CARE GIVING WITH LOVE!! MY MOTHER ALSO KNEW THAT THEIR WAS SOMETHING WRONG WITH HER. SHE USE TO SAY WHAT IS WRONG WITH ME YOU DON'T GROW OLD THIS WAY. SHE WAS VERY SMART BEFORE ALZ AND SHE IS STILL SMART WITH ALZ IN HER OWN VERY SPECIAL WAY. I AM VERY THANKFUL TO GOD THAT SHE IS STILL WITH US AND LIVING WITH US. THANK YOU FOR LETTING ME SHARE AND REMEMBER "ANYONE WHO KEEPS THE ABILITY TO SEE BEAUTY NEVER GROWS OLD"!

PHYLLIS, NY
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Right On!!!!!! No one has the right to take your life away from you. Especially a parent who signed on to take care of you as a child. Not your choice then, but it is your choice now. No door mat in our house. My mom was crying when I just did some food shopping and left her home alone for 1 hour. Oh well, that is how it goes. She cannot manipulate me, ever. It was a hard lesson to learn. Start studying the facts and get your life back. Let your dad know what is acceptable and don't stray from that.
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1913 is so right. If you set those boundaries and stick to them, your life will be so much easier and so will his. He will know what is acceptable and what is not, just like a child. Sad , isn't it?
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Don't wait. Tell him now. Write him a letter that he can open when he is older and he will cherish it.
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Dear Tatayaya,
Just getting back to your earlier comment about wishing your dad could be more honest with you, rather than giving those snotty responses. That kind of response, sometimes described as "passive-aggressive", isn't necessarily tied to aging. It's just that the person cannot openly ask for something because it would leave him vulnerable to the disappointment of a negative response. Saying "Would you like to go to a movie with me?" takes more effort and risk than saying "There's a movie showing at 7 p.m. today and I've got two tickets--are you available?" In the first case, the speaker is introducing a genuine dialogue and giving the other person a lot of freedom to respond (and create a disappointment). In the second case, the speaker is just presenting a very limited option. It's tightly controlled because the speaker is either not confident about the relationship (or themself) or simply doesn't care about what the other person thinks. My sense is that your dad is pretty fearful.
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I am wishing all the care takers and their family to try and have a nice holiday, visit with your loved one as much has you can this time of year, if they are in a home make extra visits and if home sit down and talk to them. it will help you out. I just lost my mom, for ten years she was very sick, she died in my arms in the assisiting living. the Tampa fire dept was called and told me she was in too bad of state to go back to any hospital. They called in the nurse and I got my new photo ID for traveling to New york. I was with mom three hours holding on, and made many visit's . This hoiday Thanksgiving was hard to me and know Christmas will be bad. Keep the faith you are all doing your best God bless you all. Patrica61. PS Carol have a nice holiday, may god bless you for all the help you gave me
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Hi,

First, I just wanted to wish everyone a blessed Holiday season. patrica61, I'm very sorry that you lost your Mom. She was very lucky to have a daughter like you. I miss my Mom everyday. She was my best friend.

I did have a question for everybody. For quite awhile now we have known that my father is not eating well. In fact it seems like the only thing he eats is ice cream cones (drumsticks). Lately though I've been wondering if he might be (gosh, I hate to say it) flushing food down the toliet to hide how much he really isn't eating. Anybody experience something like this?
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DEAR MACTAVISH People show the loss of a loved one in different ways. It may be that dad can hold down in his stomach since the loss of your mom and his sole mate only ice cream. Try to talk with dad and tell him how you feel, that you are worry about his health and maybe take him out to his favaorite place to eat and have daughter/father lunch and talk. When my mom got real bad with the Alzheimers/Dementia I lost 18 pounds I went down to 112 lbs. and I am 5Ft 7 normanlly weigh about 126. I did not want to eat at all. One thing I ate was ice cream my self. I don't know why? People do things for reason we can not explain when someting happens in their life stlye, take care of yourself and watch over dad. Thank you for your kind words patrica61
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hello i have been out of reach since thx giving but i would like to say to all of you that have ur loves ones to take care of i hope everything will go well with you all through the holidays and a very blessed new yr i know how hard it is to take care of a love one i took care of both my parents and it was hard but most of all i enjoyed it it didn't make me mad or bitter,,the only ones that made me made was my brothers and sisters how they didn't help me but i dnt want to be rewarded for anything i just know that i step in did my part and i know the lord will blessed me along the way in his own time...going through what i did, i wished that on no one just remember a memory is hard to lose and it hurts but always ur parents love you rather you here it or not and you love them because if you didn't you wouldn't be doing what ur doing...MERRY CHRISTMAS AND HAVE A VER BLESSED NEW YR-----------------------SONYA (NINETH CHILD)
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DEAR MACTAVISH, PATRICA61 & MSDIVA

FIRST I WANT TO WISH YOU ALL A MERRY CHRISTMAS AND HAPPY, HEALTHY & BLESSED NEW YEAR!

WE WENT THROUGH ENOUGH YEAR OF BEING CARE GIVERS FOR OUR LOVE ONCES. BE KIND AND GOOD TO YOUR SELF BECAUSE NO ONE KNOWS WHAT WE GOING THROUGH!! I'M READING THIS GREAT LITTLE DEVOTIONAL BOOK CALL "IF GOD IS MY STRENGTH, WHY AM I STILL TIRED? BY MAGGIE HILMER IT'S A GREAT LITTLE FIND. SERVING AS A CAREGIVER REQUIRES SPECIAL GIFTS, INCLUDING THE ABILITY TO CARE FOR THEMSELVES WHILE CARING FOR OTHERS. I WISH I COULD SEND IT TO YOU.

LOVE TO ALL
PHYLLIS ANNE, NY
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