'Caregiver at wits end' posted by window @ {post.created_at.to_s(:post_time)}

window — Fri, 03 Jun 2011 21:31:28 -0000

I feel fortunate that I was at a point in my life where I COULD quit a "real job" to care for my mom. She took care of most of the previous generation of grandparents, aunts and sister and it is the least I can do to try to make it possible for her to spend her last years at home. It has certainly not been easy, but when it is over, I believe I will have not regrets.

I worked for several years in a personnel office evaluating applications for employment and, yes, a period of "nonemployed" time brought up questions, but a job is just that: a job (something you do for pay) whereas caring for a loved one is a labor of love. What goes around, comes around.

'Caregiver at wits end' posted by DolphinsCry @ {post.created_at.to_s(:post_time)}

DolphinsCry — Fri, 03 Jun 2011 14:26:49 -0000

I know this is an old thread, but...

Never stop working a real job to be a caregiver. When the person you are taking care of passes on and you do have to find a job...guess what? You have a giant gap in your employment history, even if you do put caregiving on your resume.

Other thing...once you put caregiving on your resume, you get potential employers asking why you are not applying at a Nursing Home....

'Caregiver at wits end' posted by ErAdvocate @ {post.created_at.to_s(:post_time)}

ErAdvocate — Fri, 03 Jun 2011 13:54:24 -0000

Leave and don't look back!

Would you ask your fiance to do this for someone in your family? If so what would his answer be?

That's your answer.

'Caregiver at wits end' posted by nashota @ {post.created_at.to_s(:post_time)}

nashota — Fri, 21 Jan 2011 05:40:37 -0000

Unfortunately yo already have all of the choices in front of you. Her family are thinking of her prefrences and thier promises, then they are puting thier mental and physical health needs above everyone else's. Has anyone ever come in to care for her to give you a break on a regular basis?? If not WHY?? Personally It's only my opinion, but if you don't get help it's time to call a family meeting and spell it out for you. As much as you love this guy caring for his family that you never got to know before the illness may very well be what kills you.

'Caregiver at wits end' posted by Chicagorunner @ {post.created_at.to_s(:post_time)}

Chicagorunner — Fri, 14 Jan 2011 16:26:07 -0000

Please update us, as we'd love to know how you're faring. Hopefully, you've extracted yourself from this situation by now.

'Caregiver at wits end' posted by Painter4You @ {post.created_at.to_s(:post_time)}

Painter4You — Sat, 08 Jan 2011 19:01:40 -0000

I'd tell the whole family to go to Hell and clear out! Hopefully you've done all that by now. I had my mother (97 and reasonably sane) foisted upon me 6 years ago. My brother and his wife abused my mom emotionally, physically and financially for 10 years and abandoned her when her bank finally started asking serious questions. Had to move her & stuff 900 miles to Texas from Chicago. These creeps keep trying to get at her remaining assets and make demands for money when they visit. I guess they tired of hearing "NO" and decided to steal our personal items in lieu of cash. So the next time they spend big $$$ to visit I won't let them in the house and tell them to go to Hell! It's my house so can by law deny entry to anyone, including relatives.

'Caregiver at wits end' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Fri, 13 Nov 2009 17:21:39 -0000

Sue Ann gave an excellent answer. I agree totally because it mirrors my real life experience. The grandmother needs a nursing home, and his family(mother) need to be responsible for her own mother's care. Right on about the comment 'easily replaceable' as well as self respect. Don't sell yourself cheaply. Sadly, people only value you as much as you value yourself. If you sell yourself cheap, they presume you have no worth. You will NOT get more respect and love from his family, - they will presume you are weak and will take advantage of you. I applied for Medicaid 2 1/2 yrs ago to pay for my husband's (then fiancee') in excess of $1 million hospital bills. I followed my now sister in laws advice (a social worker). Her information was wrong - I believe purposely. Afterwards, she and his family threatened to sue me and bring charges against me unless I agreed to be his caregiver - unpaid. Blackmail. Don't presume that you know people based on when times are good. These kind of situations bring out the worst in people , - especially as they jostle for what they think may be an inheritance. If you really love your fiancee' and want a life together, marry each other immediately. As a girlfriend (what you are under the eyes of the law and his family), you are nothing and have no rights. Should your boyfriend become injured in an accident, you will be astonished at how quickly you will be ignored, swept aside, have no say in his medical care, or your rights to even keep your home should he die. And of course don't get involved with caring for his grandmother.

'Caregiver at wits end' posted by lilchicken2u @ {post.created_at.to_s(:post_time)}

lilchicken2u — Thu, 12 Nov 2009 16:33:11 -0000

I too hope that the person who started this thread has taken some of the good advice posted here in the past 6 months. My husband and I worked as a care giving team before moving here to take care of my mom. One of our jobs (our last before moving here) was almost exactly as the situation described. We were there 5 months, with only two afternoons TOTAL to be off and away from our client's house in all that time. She didn't want us to be there, but her POA, her niece-in-law, insisted anyway. She had actually planned to move into an assisted living unit with her husband, but he died after injuries from a car accident before they could move. She was into Alzheimers far enough so she couldn't communicate except to complain, be agitated and run away a lot. We finally figured out from bits and pieces she said, and literature we found around her house, what her hopes had been. We immediately went on a campaign to make sure she got into an assisted living facility--and we were outta there!

'Caregiver at wits end' posted by @ {post.created_at.to_s(:post_time)}

Thu, 12 Nov 2009 13:55:44 -0000

I hope by now YOU have made some extreme changes! You stated: "however my fiance's mother insists that she be able to die at home, their goal is to keep her out of a home for as long as possible." In these words of yours are two solutions.. Fiances's mother and nursing home. Where and what is his mother doing? This is not your responsibility it is hers or some other family member. Sounds like a nursing home is where she belongs. You need to reevaluate your worth and position in this family. Your don't deserve to be treated like the hired help. Demand the respect your have earned! If I were you, I'd get out today. Don't worry, they'll find someone else to care for her. You are easily replaceable to them. Courage and love to you my dear. Don't look down or around for strength..Look Up !! your are in my prayers.

'Caregiver at wits end' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Tue, 03 Nov 2009 12:55:49 -0000

Nana1950's suggestion of a secure enviornment is excellent. It's better for her and you. Safer for all involved also. You and your fiancee simply can not duplicate the care she can receive at a Care Facility. She will get regular balanced meals each day and safe transportation to medical care. She will also have the social interaction of others; not be stuck in your home with just you day in and day out. I speak from experience. My husband has TBI induced Dementia. After 2 1/2 yrs of caring for him at home, he deteriorated and is now in a skilled facility. Believe me, he is happier and safer. Don't sell her house until you apply for Medicaid's Long Term Care program. In our State their offices are at the County Health and Human Services Dept. Under the Medicaid program, You may be able to keep her house so she can return on weekends (if well enough). Under Medicaid LTC, if she recouperates sufficiently to return home, you can be paid for your care-giving services. Educate yourself first re Medicaid services legally available in your State. Don't depend on the intake case worker to tell you. (The States right now are trying to save money). Whatever you do, don't start being her full time care-giver. Once you start, you will be trapped. The family will take advantage of you and not follow through on promises to help. You will go crazy after a couple years. Don't think that the family will come to love you and appreciate you for your service. Just the opposite. Caring for a person with Dementia/Alzheimer's is totally different than ordinary care-giving. It's not for the 'amateurs'.

'Caregiver at wits end' posted by Daughter1st @ {post.created_at.to_s(:post_time)}

Daughter1st — Tue, 03 Nov 2009 04:26:50 -0000

Honestly, a secure environment (Home for those with dementia) would be a short adjustment for her, and I totally believe she would like it. It's not fair to you or your fiance to have to go thru this, real love sometimes means letting go. The cost involved (possibly with selling her home) is well worth the satisfaction of knowing she is properly cared for and in a safe environment plus she and her husband worked for it, and it should be used for her. So nice of her children to put this off on your fiance, that is sad.

'Caregiver at wits end' posted by cmacp @ {post.created_at.to_s(:post_time)}

cmacp — Mon, 02 Nov 2009 15:34:29 -0000

I've been through much similar, - especially the "fiancee" part. My first reaction is to just get out of the whole situation. You don't need it. If you feel you love your fiancee, get married immediately!!! - or sooner!! As a fiancee, you are a 'nothing' under the law,have no rights, and things as they are will only get worse. You need the protection to assets offered by marriage. My gut feeling is that eventually, (under the rule of no good deed goes unpunished), the family may bring charges of elder abuse and theft against you. They may sue you personally for return of the money you "stole". The fact that you are not married sends a strong signal to the family that your fiance is not serious about his commitment to you, will not stand by you in a fight, - thus making you an attractive target. You may feel commited to your fiancee and his family, but actually, - you have no dog in this fight. As things stand now, you have everything to loose and nothing to gain. Don't act like your married by taking on responsibilities of a married spouse. Either cut yourself loose (my 1st suggestion), or get married (and your name added to the title of your home)right away. As time goes on, you and your sweetheart will quarrel over this issue.

'Caregiver at wits end' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Sat, 17 Oct 2009 03:03:44 -0000

Get your down apartment and job and your fiance and you can haev your private get-away. Get out of it.

'Caregiver at wits end' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Sat, 17 Oct 2009 02:57:50 -0000

After a year you will become less generous with your feelings about your fiance. Go back to work and allow the family the privilege of hiring daycare. If you are personally being paid be sure that taxes and associated financial deductions are being paid for your retirement and set your wage if you choose to take on this work. Have your fiance's mother enter into a general agreement with you and your fiance regarding in-home hospice care and that she will personally supervise and make arrangements and do 24 hour work associated with these events since she is demanding that gramma die at home. I don't know if you live in a big city and if quality hopsice care is available. I would not enter into any written agreement with "Mom" about hospice w/o a caveat that allows 911 or physicians determination that it would be more compassionate for gramma to pass on in a nursing faciltiy with 24 hour nursing staff available. Yu woudl not want to lock gramma into an incompassionate death. At home passing is not always the best option.

OR --Get out of this mess and get your own apartment and job and your fiance can have a get away "love nest" with you alone.

'Caregiver at wits end' posted by DolphinsCry @ {post.created_at.to_s(:post_time)}

DolphinsCry — Wed, 14 Oct 2009 17:32:51 -0000

Sorry you have to deal with this situation, and have not replied until now.

Galowa said it best.

I have given up on my grandmother. 25 years of being treated like crap is more than enough, my breaking point has been reached.

If your fiance loves you, he will understand the burden being placed on you. If he can't accept it, it is time to find a better fish in the sea.

'Caregiver at wits end' posted by kjohnson @ {post.created_at.to_s(:post_time)}

kjohnson — Mon, 12 Oct 2009 19:44:05 -0000

I'm sorry you have been taken advantage of like this!! Tell the family immediately that you are going back to work and they need to find a caretaker.

Homecare Assistance has franchises all over the country, so they would be your best bet!! Check them out at www.homecareassistance.com

Update us and let us know how you are doing!

Best, Kathy

'Caregiver at wits end' posted by GALOWA @ {post.created_at.to_s(:post_time)}

GALOWA — Mon, 12 Oct 2009 05:43:28 -0000

IT HAS BEEN TWO MONTHS SINCE I REPLIED TO YOU. What is happening?

Something good, I hope...

©suzannemcable2009

'Caregiver at wits end' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Tue, 04 Aug 2009 01:53:54 -0000

Good luck with the recommendations already posted! You deserve to be happy, and you need to take care of you first. It also sounds to me like it's time for your fiancee's family to have a reality check. Just because someone 'promised' to never send a loved one to a care facility doesn't mean it should never be considered or done! My mother is in an assisted lviing center because of her health. Mentally she's still all there and she would give anything to be able to live at home, but she also knows she can't care for herself and requires 24 hour assistance--more than any family member can provide, as we all have our own families to care for--so she is 'resigned' to her current situation and makes the best of it. It sounds to me like having your finacee's Grandma at home is causing more harm than good.

'Caregiver at wits end' posted by Journey002 @ {post.created_at.to_s(:post_time)}

Journey002 — Sun, 02 Aug 2009 15:28:46 -0000

I can completely understand where you are coming from. I have been taking care of my 90 year old mother-in-law for the last 5 months. It was my suggestion that she move in here. At first, I was her "best friend" and she would follow any advice I gave her. However, being the "best friend" and the only one giving any care towards her started to wear on me.She became distrustful of me and everyone in my house, insisting that we were plotting against her to make her feel like she was losing her mind. I found out through her primary care physician that there are pallative care groups out there that could help. It is all paid through her medicaid, so, it costs nothing for her or us. They have round the clock nursing and doctor assitance (they come out once a week at the least...more if needed), a social case worker who comes out every other week (unless needed more), an assistant who comes out twice a week to help her bathe, a pastor who is non demoninational to help with her spiritual needs and volunteers who will come and sit with her if you have errands to run. They can prescirbe medications (some of which can be delivered directly to your house..and some that Medicaid pays completely for). All of these people are there for you, as well. They completely understand caregiver burnout and want to help you in any way they can. They will listen to you and believe you because they understand that people with dementia will tell lies and such. You can call them at any time and they will be there for you. They truly have been such an enormous help to me. While they haven't been everything I would have hoped for, they have taken a lot of the burden off of me.

I still wish the rest of her family would help out by coming and taking her out on a regular basis and such, but, I don't see that happening. So, I have told my husband that I will now be hiring an outside company to come in at least 2 days a week, just to give me more of a break. My mother-in-law can afford it, so, I am going to do it. The pallative care group has given me some recommendations, so, I will start calling and interviewing them next week.

I hope that these suggestions will help and you don't end up having to leave your home or your fiance. Please keep us informed as to what you end up doing.

'Caregiver at wits end' posted by sweetie18 @ {post.created_at.to_s(:post_time)}

sweetie18 — Sun, 02 Aug 2009 04:38:34 -0000

I am in a similar situation. It is my grandmother who has that dissorder as well. They say she is days from passing away.

Anyway, through all of this with my grandma..i think that my family could have done things a bit different. She was in a nursing home for quiet sometime, but later got out b/c of improvement. She got to live in an older residential area for the elderly, the whole time she progressed to getting worse. You didn't sign up for that, but nobody has, and you are doing a wonderful thing, but if she is not happy, you are not happy, and if she isn't even in her own home than, I think she would like it better in a place that has a lot of assistance, color to it, and activity going on. I worked at a nursing home, and the people like it at times, but hate it other times. They need suppot from their family if they are put into a home. To watch over them, visit, and take out into the world now and a again.

So if you can handle that than she might actually be a bit happier to be someplace away from the drama and termoil. Just make sure that if you love your husband to be that you make sure he visits no matter what or he will later regret it.

I hope I have been help. My prayers are with you all.

'Caregiver at wits end' posted by GALOWA @ {post.created_at.to_s(:post_time)}

GALOWA — Fri, 31 Jul 2009 21:25:23 -0000

START LOOKING FOR A GOOD JOB IMMEDIATELY!!!

Give "the family" (including your fiance) TWO WEEKS to ONE MONTH NOTICE as "caregiver." if that means moving out and getting your own place, moving in with your parents, or with roommates, then prepare to do it.

if your fiance really loves you, he will understand that you cannot survive (let alone thrive) in this kind of living arrangement, and that his marriage relationship with you will have virtually no chance of surviving this kind of beginning... you can visit each other until the grandmother situation is resolved.

MARK OFF THE TWO WEEKS ON THE CALENDAR in one color and the remaining two weeks on the other. then follow through.

remember the old saying? "why buy the cow when you can get the milk for free?" only it's not sex we're talking about here - it's something FAR more valuable, AND your fiance is not the only one drinking at your well. his entire family is using you. you are giving away your LIFE, your TIME, your very SANITY!!! this is NOT your problem, you are FAR TOO YOUNG, not to mention the fact that you are not yet even part of the family...

please put yourself first. you can't love and care for anyone else, if you don't know how to (or are not allowed to) love and care for yourself first.

i care - about YOU.

'Caregiver at wits end' posted by kc5283 @ {post.created_at.to_s(:post_time)}

kc5283 — Fri, 24 Jul 2009 13:08:47 -0000

My prayers are with you. I hope someone else is available to let you know what there is YOU can do for yourself. As a caregiver there are ways of learning how to cope with these situations. Meditation exercises, Tai chi classes and several others. It is hard working with someone who has dementia but remember people that know the situation are not looking at you being a bad person. It also sounds like her family is aware of the situation or they would have had you out of there in a heartbeat. It is a sad circumbstance that you are in and you need help as much as she does. Does your fiance understand? I hope that he does and it sounds like you need to talk this whole thing over together. If he loves you, he should see what it is doing to you and how if will affect your relationship. Again you are in my prayers.

'Caregiver at wits end' posted by femmeaqua @ {post.created_at.to_s(:post_time)}

femmeaqua — Thu, 23 Jul 2009 22:20:04 -0000

OMG...she sounds like my mother and sometimes my dad. I can't believe in two months noone has replied an answer for you..!!! My sister is a wiz at helping people with problems like this. Im going to give her a call, read this to her and get back to you..Once again..I can't believe noone has answered you..LOL

'Caregiver at wits end' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Tue, 28 Apr 2009 14:52:20 -0000

Just need to do a little venting and if anyone has any good advice, please throw it out there. I have moved in with my fiance; his grandmother lives with him and has dementia (he bought her home to help her with her finances with the promise that she could continue to live here until she passes). No sooner than I moved in, my fiance's family decided that I would be Granny's caretaker and began paying me to stay here with her instead of going back to work full time. I've always worked outside the home, so staying home is an adjustment in itself; what makes it so much worse is that Granny is just not a very nice person. This is not due to her dementia, I am told she has always been this way. She lets us know on a daily basis that she does not like either me or my fiance and does not want me here; however, the family members that she really loves do not want her and only use her for money. They drained her savings (over $25,000) and she was bouncing checks to give them money (they are drug addicts); so my fiance's mother had to step in and take over her finances. So we are constantly called thieves for taking her money away and everytime the family calls to get money and she doesn't have it to give them, she becomes extremely angry at my fiance and I (even though we're not the ones who control her finances); won't speak to us other than to yell or call us names. On top of that, she has always been a pathological liar and tells horrible stories about us to people who call her or come to visit. For example, the local preacher came for a visit and she told him that I lock her in her room for hours at a time and won't even let her out to go to the bathroom. Of course this is not true, I am as good to her as I would be to my own grandmother, no matter what she says to me, I keep my cool (although sometimes it's hard) and try to reason with her. Of course her ability to reason is gone due to the dementia so she just rants and raves all day long. I don't know how much longer I can live like this, she keeps our home in a constant state of turmoil. Because she refuses to follow doctor's orders such as wearing her oxygen, taking her medications, smoking like a chimney, etc., I feel like she needs to be in a more controlled environment; however my fiance's mother insists that she be able to die at home, their goal is to keep her out of a home for as long as possible. But if she can't stay here, she would have nowhere else to go but to a nursing or residential home because no one else will even attempt to take care of her. I know I sound selfish, but I don't know how much more I can take. I understand that she probably feels like I've taken over her home and is angry about that, even though I've not even set any of my stuff out and tell her every day that this is still her house. I love my fiance very much and he really needs me here, so leaving him is not an option. Every day I become more and more depressed. If they insist that she continue to stay here, I want to be able to hire someone to come in and take care of her so I can go back to work, but she's so mean to everyone that I really don't think they'll be able to keep anyone trustworthy here. Is anyone in a similar situation? How do you cope? Any suggestions would be so greatly appreciated.

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