JenS,

 I cannot believe you haven't gotten any response to this especilly from one of the Caring team! From experience with my daughter helping me with my mother it is very unfair to ask this of grandchildren especially when she has children of her own...I understand your mom works and takes care of your father but I had to quit my job to take care of my parents and am also low income. My apoligies to you but you are a very caring person with lots of love for your grandma but your husband is right!! Your young and have a family of your own and this will take a bigger toll on them if you don't do something. In all honesty I would pack grandma's things, being your no longer in her home to be made to feel obligated, and take her to your mom, aunt/uncle and flat out tell them this is not your responsibility and before you lose your own family they need to do what's right. What are they going to do? They can't pack her back up and drop her off at your house. I feel you are being used for them to go on with their lives and not be responsible for what is the right thing to do. After they have had a crack at it they will see it's not so easy and do the proper thing for her. Please think on this and love your husband and child, it does take away from them.

Hmmm...I find it hard, if not impossible, to argue with your comment.  It gives me a point of view that is not steeped with family-feelings.  Thank you.  I know what I will have to do if it comes down to making that choice.

Dear JenS, your situation sounds very, very tough. I'm sorry we missed this post somehow on the boards, and want to see what suggestions I can provide. One idea would be to take coursework that would allow you to be paid as a caregiver, or for your mother (if she quit her job to care for your grandmother) to be paid to do that. It's allowed by Medicaid in most states now. We have lots of articles on the site about doing that. I also wonder if calling a family meeting with your parents and your aunt and uncle there, as well as your husband, would help everyone see everyone else's point of view and help you find a way to share this big responsibility. For example, if your aunt and uncle don't have time to help with daily care, maybe they could provide some funds (to represent their share of her care) which you and your husband could use to pay for overnight help so you can go out, go away, etc. Your marriage is an important piece of this! Keep us posted on what happens.

Where do I find the articles on taking the coursework to become a paid caregiver? What are the qualifications? 

Thanks in advance :) 

Jen S,

I can understand your situation to a degree and must say I am appaulled by your parents, aunts, and uncles attitude and the stress they have put on your young family.   I am pretty much the sole caregiver to my 88 year old grandfather.  My father passed away in my 20s and my aunt passed away a few years back.  I have one cousin who lives out of town which leaves me, which is fine because I have always had a close relationship with my grandparents.  I also have a 15 month old and my wife I are expecting another.  We, or should I say I,  had considered moving papaw in whith us but after much thought, consideration, and discussion realized that with a baby in the house it could be recipe for disaster (this after he entered the baby room yelling for us because he didn't know were he was).  I have turmoiled greatly over where to place my grandfather.  We originally kept him in an assisted living home which has been pretty good and might be the right place for your grandmother.  However, he has started to fall frequently and his demintia has progressively gotten worse  (Of course, if you don't talk to him every day, its hard to catch so some distant family members think he is fine)  Consequently, I'm up at 3:00 in the mornind the day I"m switching him to a VA nursing home trying to figure out if I'm doing the right thing.  At anyrate, your grandmother shouldn't be thrown on your shoulders, especially since you are just starting your family and she has three children who live in close proximety who can assist.  Since they didn't want to let you keep the house long term in exchange for staying with her and caring for her perhaps you should make the same offer to them and they can move into her house with her and care for her and they can have it later?  It seems their own selfish greed created alot of this situation.  It amazes me when people feel their entitled to a loved ones assets but are not willing to help with their care.  You should demand more of your parents, aunts, and uncles and if they don't wish to help, talk to an attorney about having a guardianship set up for her and seek a courts guidance.  If she can't make her own decisions, at least the court can appoint someone they believe has her best interest.  Do you have a power of attorney?   If so you might need to go to teh court?  Should they not be willing to let her live with them, it sounds like her house should be sold to help provide for care at a assisted living facility.  I sympathise with your situation, but please don't take it all on your shoulders.  I wish the best and hang in there.

Thank you for the responses.  I enjoy the feedback I get here because it isn't filled with familial emotions.  I am looking into the possibility of being a paid caretaker, but that is easier in some states than others.  Apparently in Utah it is a little harder than I thought, however I still have quite a bit more info to obtain.  I must add, however, that I don't take care Grandma by myself.  I thought I added it to my explination (odd, since I added everything else).  My mom does a LOT to help.  I take care of the medicating, making sure she's fed, dressed, and okay etc.  My parents do anything that requires taking her out, (dr. appts., shopping, visiting family etc.) which I think is almost harder.  However in the last 3 weeks she seems to be having more spells with confusion and doesen't want to go anywhere to do anything.  So, at the risk of sounding calloused, I am not so sure this will be my problem for long-but who really knows?  My Grandma wants my mom to be the one who takes care of her medical issues, and it is my parents who always get called up here whenever she wants company or somebody to argue with about whether she has  cancer or not.  (she doesn't).  She wants my parents there all the time, and...well...honestly...I don't, and I don't think they want to be here all the time either.  My mom has looked into taking care of Grandma and discovered that she legally(?) can't.  Apparently because my dad is on disability and mom takes care of him, she can't legally take on another person to be a caretaker of.  My aunt trys to tke grandma out to eat on friday-at least-but Grandma never wants to go.  My uncle, well I guess he is busy.  They both complain that they have their own life to live. I can't help but think that they are awfully lucky to live their life and expect everybody else to drop theirs.  I agree, there my come a time, shortly, that we will have to make some difficult decisions.  I am also starting to see a pattern of advice from here and from others not in the family that maybe I took on more than my little family can chew.  Thank you for all your responses, and I gladly welcome more input.  Sometimes we get caught up in our tired, busy little life and need others to shine a bit of logic on our minds.

You have taken on a lot of responsibility.

I think it is time you demand help from your other family members. Taking care of Grandma should not fall entirely on the shoulders of you and your family. Especially at the risk of your family falling apart over it.

I don't know if you can afford to have someone come in and help, or get her into a nursing home. That's something you may have to look into.

I agree.  We may be looking into getting someone in here to help...But it needs to be something   my husband is  cool with, of course.  It depends on what her insurance will cover, too.  There is a caretaker fair this weekend that my parents, and hopefully me too, will be going to.  Maybe that will make some resources more available.  Thank you for your comment.  :)

Jen S, I fervently hope you are able to make your parents, aunts and uncles see that THEY should bear more responsibility in your grandmother's care. If they refuse to take complete charge of your grandmother, you can present them with the ultimatum that you are going to have your grandmother declared a ward of the court and then the court (County or state) will decide on her care. If she owns the home that you referred to, the court can step in and sell that property to provide for her upkeep in an assisted living facility. When those resources are depleted, then she would likely qualify for Medicaid and state welfare benefits. You can talk to a Department of Family and Children Services (DFACS or DFCS) in your county. I know that having any family member living in your house can put a strain on a marriage, even under the most ideal circumstances. Your husband has shown more compassion thus far than most men would do. Your daughter and any future children deserve your attention while they are young. Since it is likely that your grandmother is beyond the point of reasoning and understanding, there is not much point in saying "talk to her and try to make her understand."   When I was in high school (many years ago) I had a best friend whose maternal grandmother lived in their household. When the grandmother developed dementia and caused quite a fuss, my friend suffered. She developed a strong resentment for her grandmother's disruption of their otherwise happy home. She held her parents responsible for this disruption and never forgave them. I don't mean to give you more cause for worry, but please TAKE ACTION before your own young family suffers more. Your grandmother has had her life and her family. If you do your best to get her situated in assisted living or nursing home, you will have more than done your duty!

Hmmm. Thought provoking.  Thank you for the input.

Jen,

This is a sore subject with me because my situation is similar. I have soooo much to say that's it's hard to know where to begin without being all over the place and still be helpful to you. I take care of my 88-year-old maternal grandmother while fulfilling the responsibilities of being a wife and mother of three young kids ages 4-7. My grandmother raised me, put me through private school, bought my first car, and on and on so I have the same burden in my heart for my grandmother as you do for yours. My mother, who was her daughter, is dead and her son is nowhere to be found so there is no one but me.

Here's where you have an advantage: you have people who can and should be taking care of your grandma, but they won't. I know you say they have a lot going on in their lives, but the difference between you and them is that you've made adjustments to care for grandma despite what you have going on--for everyone else that has been an option.

The first thing I had to come to terms with and that I think you need to accept  is that someone has to make the difficult decisions and/or be the bad guy and that somebody is you. There is no easy way to deal with this situation. It won't be pretty. As a matter of fact, wear the bad guy badge with honor because until you start the ball rolling, the things that really need to get done for your grandmother and the decisions that really need to made on her behalf will never be accomplished if everybody just lets things continue on the way they have been.

Once you come to terms with that then you need to move forward. I would start by having a "Come to Jesus" meeting with the family. Emphatically let them know that you can't do it anymore. Be strong and be courageous. Don't let them turn it into an apple and oranges debate where  they go back and forth with all the reasons they can't take grandma. You didn't call the meeting for that and frankly that's not your concern at this point. All they need to know is that you can't do it anymore. As far as I'm concerned, they don't even need to know why (that your husband is burned out), that's not their business. And most importantly, DO NOT APOLOGIZE. You have been nothing but a blessing to your grandma and you aren't letting her down. Be strong and shut down all attempts to make you feel guilty.

If your family won't take your grandmother willingly, then start a legal chain of events going. WITHOUT paying a lawyer, I filed petitions to the probate court to become my grandmother's guardian and conservator and was granted both. If your aunt and uncle won't take your grandmother willing after you tell them that you are done, and you said that legally your mother can't be her caregiver, then I agree with a previous poster here that  you need to file a petition for her to be a ward of the court and have the state of Utah declare her a protected individual so that her assets can be sold and the proceeds used toward her care and/or she can receive Medicaid and be placed in nursing home (it sounds like your grandmother's dementia has progressed to the point of needing placement in a facility especially combined with the physical ailments that you mentioned). If you can include doctor's assessments with your petition, then good. If not, then the state will have someone evaluate her. It will start with a court representative (the guardian ad litem) and then his or her report will call for a medical evaluation. Do know that you aunt, uncle, and maybe even your mother will be livid as they will be notified by the court of your petition because they are considered interested persons and will be called to show up at a hearing. They may even contest, which would be good on your part because if they contest, then all the court will want to know is which one of them will be taking your grandmother since they are contesting.  See this is the part that has been optional to them previously--their involvement-- they do when they feel like it, but when it is too stressful and/or grandma gets to acting up/out then "they have their own lives". What you want to do is create a situation, one way or the other, that let's them know that their full-time involvement with your grandmother is NO LONGER OPTIONAL.  As a previous poster commented, it's funny how they're still all up in the financial parts of the matter--They don't want you to have grandma's house, but they don't want to take care of her fulltime either--time out for that nonsense. Again, remove the options. The reason I'm not suggesting that you become your grandmother's guardian and conservator, or even become her caregiver for compensation as was suggested by another poster,  is because you've reached a point in your marriage where you have to let go of the responsibility of taking care of your grandmother.

Speaking of your marriage , the paranoia, the accusations, the depression, the downright orneriness from your grandmother--I'm right where you are. So far I am "managing" my grandmother (I laughed as I typed that--some days are better than others) and my husband knew the first week that I met him that my grandmother was a huge part of my life. She was the first thing I told him about, just like the first thing a single parent mentions to a first date is her children. (although my grandmother didn't have dementia when we first met and got married and we like you and your husband lived with her for a short while during our marriage) However I do have a limit, and that limit is losing my husband. Consider that limit for yourself. My husband has been tremendous, but if/when he approaches me and says that he can't do it anymore, I know that he has already gone to the wall for my grandmother and has given and done more than any of her blood relatives combined (I suspect the same can be said for your husband) and enough is enough. I've already accepted that even if he doesn't, her dementia will progress to unmanageable point anyway and she will have to go to a home. It sounds like the time has come sooner for your grandmother.

As for you and your family's promises to your grandmother that you wouldn't put her in a facility, you've got to ask yourself (and your family members at the Come to Jesus meeting), "is that realistic?" Your grandmother's condition is just too big for you now and yes you do owe your grandmother. But what you owe her is to do what is best for her, not to refrain from putting her in home where a team of people care for her 24/7.  Especially if: a) the other family members can't seem to make her a priority and b) she's just too far gone now.  If you've gotta tell her she needs to be in home so that they can treat the cancer she thinks she has then so be it--do what you have to do. Putting her in a home is not easy, but it isn't a crime. I'm not even suggesting that a caregiver come to your home because again, I believe the situation has reached the point where your grandmother needs to leave your home. If money is a concern, then check out the best homes that will accept her medicare with her social security paying the balance or copay or that will accept medicaid if you can get her on it (if you can get the state involved and get a case worker, that should get her moved closer to the top of the list for aid and placement). I know those facilities aren't the most upscale (something that I've had to come to terms with because money is an issue with me) but again we've gotta do what we gotta do. It doesn't have to be your marriage or your grandmother. Having a family or your grandmother. You've just got to make some difficult choices about what to do for grandma. And thus far you have been operating (and your family has been making you feel) like you don't have a choice, but you do--it's just hard. Guess what, everyday, and I do mean everyday my grandmother insists on going back to her home (she keeps her bag pack and declares she's going to the airport). She doesn't agree or understand why the court is involved. I don't say a word because I know it's not her choice to make anymore (and she can't process it anyway). The decision making is mine now and it's tough, but I have taken control. I'm urging you to take control.

Lastly, and I hope this doesn't send up a red flag with Caring.com or offend you, but get to know God. If you already know him then really get to know him.

Hold your head up high. Writing this note has been therapeutic for me and I hope it has been encouraging to you.

KC

Thank you very much for your comment.  It makes me happy to see that someone else is as thourogh in their writing as I am. :)  Thank you for all your information, it really explained a lot and answered many questions I had.  There has been talk about a meeting happening-it never occured to me that I could/should call the meeting.  This was kinda like a pep talk too.  I am not offended by anything you wrote.  I feel my life has been very blessed to have her here, but I know that she never wants to become a burden-she tells me this every day.  I feel that we were guided to this house because we were meant to keep her for a while, but I also feel like it was never meant to be a burden on my family either.  I just found out I am pregnant so something will be happening soon....I will keep reading your comment again and again there is just so much logic and love in it.  Thank you again.

Thanks KC for the comment to JenS  I am JenS's mom and am a lot like you I feel a lot of duty to my mother in law, JenS's g-ma.  She helped me raise my kids and took over where my mom left off.  My mom died when she was 52 yrs.  So I have had my mother in law longer than my own mom.  The problem I have is my husband's health is no good and utah disability will not alow me take care of both.  As for 24/7 care resthomes in Utah they lead alot to be desired.  I just lost a good neighbor friend due to the so called 24/7 care.  I also play the piano in some of these places, to say the least  I'm not at all impressed in what I see.  The other problem I have is that G-ma has chosen me to take care of her health needs especially on her last part of her life.  I have been around this medical stuff for some 40 odd yrs.  Sneaking into the Hosp to see my mom when she was sick.  I took care of her when she came home,  when I got married my Husband's health was not great and has deteriated through the years.  I have taken my mother in law through many health issues including 2 cancer surgeries.  The problem is the sibs don't respect my husband whom is the eldest son.  He is not a college graduate, they both are.  Sis in law is a school teacher, bro in law a retired police (so naturaly he's a pro in elder law).  On one hand the caring for G-ma I get told not to do anything because her mind will never get better so just let her go,  on the other hand I get my head bit off for calling an eye Dr. to find out if they used a new med on her macular degeneration treatment, because she took a reaction and was hallucinating badly.

Any Ideas?

pianoratfink

To JenS and your mother:  I know that you don't want to alienate close relatives (siblings, etc), but when it becomes evident that they are not helping and taking responsibility, leaving most, if not everything for you to do, you just have to realize that you CANNOT try to please everyone.  When you make a decision that is in your grandmother/mil's best interest, ignore the nay sayers!  Where were they when the decision was needed? Were they paying the bill? etc.  You can break your back leaning over backwards to please others and it will never be enough, never be appreciated, etc.  The mode you are in now is purely SURVIVAL. Let the others deal with their own issues.  One thing you could practice repeating: I cannot and do not need to please everyone! Saying it to their face might be helpful too! For your own peace of mind, remember, "This too shall pass!"

Wow, that is really hitting the nail on the head. :) Thank you for your honest and very true response, you are absolutely correct.

Jen,  I sure don't mean to sound like I'm telling someone else what to do! These are things that I wish someone would have said to me 4 years ago. Back then, I didn't have anyone to talk to and, as you know, some people just don't care what you're going through and would rather not hear your problems.  Remember that old line about, "Don't tell your problems to others; half of them don't care and the other half are glad!" Well, having someone on caring.com to listen and share their own experiences would have been so therapeutic to me back then.  I do care and I will remember Jen S and family in my prayers. I mean that; I am not just saying that. I am reminded of that old spiritual, "My Jesus knows just what I need; He satisfies and every need supplies; yes He knows just what I need."  God Bless you and give you peace.

I never felt like you were telling someone what to do.  I was just surprised at how much sense you made.  I am very grateful for this site, you are correct-it is hard to find someone to talk to that doesn't think you are just whining or wasting their time.  Thank you so much for your support and prayers. :)

Thank you for the comments NeedGrace, very consoling its nice to see a religeous side for a difficult situation.

pianoratfink

Jen,  You have alot on your plate, your amazing... and you DO deserve to have your own life.  I know you and your mother are working dillegently to do the best possible thing for G-Ma.

So many thoughts went thur my heart in reading this, I hope this isnt to random or choppy, I heart and prayer are yours...  Anyway here goes!!:

Have you considered that G-ma might be 'paranoid' about going into hursing home because she herself knows it is what needs to be done???

In the mean time does your entire family have to be in your home all the time??? This must make the stress level just triple??!!   Brainstorm on options??   If you have done that a bunch of times, get some new blood in the game,  seriously just a diffirent group of people to toss ideas to/from??

There does seem to be a consenses that aunt & uncle are not doing there share of the hard work.. and we cannot make them do it.  So.... it seems your mom and you need to organize a goal,  before you call the meeting.  When you guys stand together knowing this IS what is has to happen, they may just do something, if they dont, you have a plan.  I'm wondering if aunt & uncle have an agenda, or they have contributed in other ways that in there mind abolish them of there ultimate responsibility.  if they are waiting for there bonus  abit premature?? !

It is amazing what we can do when we dettach from the  "Emotional baggage" of a situation.  Sometimes when we can put ourselves in an "observer position"  it gives us just the perspective we need to see it through with more clarity.

Why is it that care-takers find it so difficult to put ourselves on the list!                                  somewhere close to #1          who is going to suffer the most if the situation continues as is??  Your children!?!??  Would G-Ma really want that??  The big picture gets so way-layed in the day to day struggle.

Put a picture of a miracle in your minds eye, the miracle you want,  you need, know it will be, then go make it happen..!!. - I heard somewhere there is power is numbers! -

Many of us do get strengh from God, there is diffinately a higher power at work, in this work.  I dont think it is offensive to anyone to admitt that, We dont have the time to try to 'convert' anyone to anything, just trying to get them to take there meds  & be nice!!

Keep us posted, This process is so cathartic, thank you, thank you thank you...

kjw

You are very correct.  You brought up some points that I haven't thought about.  I like your suggestions, they are very logical and I agree.  I really appreciate your point of view and your information.  It is so nice to "get some new blood in the game," that is one of the reasons I posted here.  Sometimes when you think you have all the answers it is nice to see that other people can give you some other ideas.  Thank you again.  As always I appreciate the time people spend to comment. :)

Jen S, I posted this in the "Suggestions section", but I thought you might not see it so I am copying it here: CAUTION WITH LONG TERM ARICEPT USE:
In several discussions, respondents have said that either they or their loved one have begun taking Aricept. I am writing this because everyone needs to take seriously one of the warnings with Aricept use. One warning is that Aricept may aggravate or cause ulcers and bleeding. My Mother had been taking Aricept for about 2 years when she experienced serious hemmorhaging from her intestinal tract. She hemmorhaged 7 pints of blood the first time this happened and she almost died. Surgery to find the source of the bleeding was not an option for several reasons that are not really necessary to this discussion. After that first episode, she continued to take Aricept; her doctors did not say she should not. Exactly one year later, she hemmorhaged a second time, this time stopping at 5 pints lost. This time, I told her doctor that I thought she should discontinue Aricept and he agreed. She had been taking Namenda along with Aricept for a many months and continued to take only Namenda. When Mother finally went into a nursing facility in 2008, the Namenda was also discontinued because it appeared to be of no benefit at that stage. Sometimes I think that we don't take the drug warnings seriously. In the case of long term use of Aricept, I think the warning should be.

That is very scary and informative information.  Thank you for sending me  this.  :)  She isn't on this yet, but at least I know to steer clear of it in the future.

 JenS,

Greetings from the western front!  I have two simple points to make:

1)  YOUR HUSBAND - Listen to him, consider him and accommodate him.  He is your life partner, and every commitment you make becomes his commitment as well.  When he tells you he can't take it any longer - BELIEVE HIM - without judgment, or disappointment.  The guy sounds like he's been a saint... Let him have the chance to be JUST a husband and father again.

2)  YOUR GRANDMOTHER -  as long as YOU ARE TAKING RESPONSIBILITY for her care, NO ONE ELSE WILL.  PERIOD.  If she did NOT have dementia, she would NEVER AGREE to burden you, and your young family, with her care or anyone else's...  Think about that.  Your family is like mine, "oh SO concerned," as long as they don't actually have to DO anything.  You are too young to be in the sandwich generation.  Save your strength for when your OWN mother needs care.  Believe me, that time will come soon enough.

DON'T WAIT for good luck - Pack her up and move her back to her own home.  Don't forget to call Adult Protective Services, so they know she needs an IMMEDIATE intervention.  Then call the family and tell them there is a crisis to which they must all respond IMMEDIATELY.

Lastly, NO GUILT.

JUST DO IT.

Thank you for your comment.  You make some very good points.   I completely agree my husband has been a saint and I do belive that he has the right to be a husband and a father.  I am not dissapointed in him, I am grateful that he has stuck with it as long as he has.  Thankfully we have decided that we will have Grandma move in with my parents in October for as long as they can care for her.  That seems to have lessened the burden around here.  Unfortunately my aunt and uncle don't want to help my parents in any way....Ah the drama never ends. :)  Thank you again for your time and comment.