my son found this site and hoped it would be a place for me to get help.I am 44 yrs old and the primary caregiver for my mom who was diagnosed with AD a year an a half ago. She is 82, and four feet eleven inches of fire.... She has been living with me and dh for mostly all of this time as she is scared to be alone. I have one sister who is six years older than me and we now no longer speak to one another because of this. She wanted to place mom in the nh two months after her diagnosis and me being durable poa refused. So after all of the begging for her to help and all of the tears of pain because I feel abandoned by her I let lose and unleashed all my hurt and pain and "gave her an ear full" so now she has decided Im really on my own so to speak... I work 42 hours a week at a bank where I have to smile and take care of people"s problems all day long and then I come home and have to spend the rest of my hours until bedtime depending on mom when that will be taking care of her problems of the day. I feel so much guilt all the time, maybe I dont still do enough, maybe I should not feel selfish to want my life back, I worry all the time about her, at first I almost killed myself running back and forth at all times of the day and night dragging her and that darn dog of hers and her bag of clothes.
Until I finally decided one day to just bring her here to my home and take away my dh's den and make mom a room of her own. At first she would seem content and then every morning she would be packed and ready to go home agian, no matter what I would do or say. So the journey cont. back and forth to my exhaustion would take over and I would keep her here regardless. Now it has been months since she has even gone to her house, they are sitting there isolated and closed. She went a few months not asking to go home and now it is starting agian every night crying, throwing things down, cussing me, making me feel like Im an absolute horrible daughter and her favorite thing to say to me"Im sorry i have been such a burden to you" Which kills me because it is the one thing I have never ever said to her and believe me I have went to great lengths not to slip.. I have lost 42pounds and went from a size 14 to an 8 and still going. Cant eat, no appetite and if I do I get sick. I am now on anti-depressants for the first time in my life but Im not sure it helps because all I do is cry and feel angry and hopless all the time. She doesnt think anything is wrong with her and the doctors have told me she will still be going physically when her mind is all the way gone. She is extremely healthy in all other ways. I feel guilty for wishing at times something would happen some cancer out of the sky would fall on her so she would not have to suffer at the hand of this horrible disease. I have researched everything and read all I can to get an answer anytime I can find it. My dh is tolerated so much and I thank god he loves mom and has been my arm extended in this. He trys to help me now with her finances and in other ways yet i worry because we dont get quality time alone like we should.. We still have two sons at home "college" and so our once big house now seems cramped at best. I took an equity loan out on moms properties so I can at least begin hiring help for myself and yet I even feel guilty to leave her with good qualified people.... She is very vocal about strangers and doesnt really want any help outside of me. If it were not for my son who introduced me to this board I dont know how I would have survived even this long. He has watched over her , kept her for me to have a break, and been my sibling in this journey so far. Now I worry all the time about him because mom walked 1/2 a block while he was taking a shower the other day scared him to death and the fear in his face forced me to hire help agianst her will. One week into caregiving and mom seems to do fine during the day when Im at work the caregiver seems to act like mom is just wonderful, until I get home the lady leaves and then mom starts on me until bedtime lately..... Tonight was one of the worse. She went to bed in her clothes with her teeth in her mouth.... just covered her up and she's snoring fine.... Lord help me face tommorow , one more night without being able to eat.... my nerves are shot and I dread the weekend. I'll go to bed now myself and cry the night away agian.. Tommorow is another day....

Oh Jess,

(((((((((((((((((((((hugs))))))))))))))) )))))) Welcome to you, although everyone here will be as sorry as I am that you need to be here. I'm so glad your son found us! This is a place you can say whatever you need to because we completely understand, in the been there, cried buckets, done that, and survived (or are surviving) sense.

I'm Barbara and I live in VA. My mother got AD in her early 80s and you can read my story (and the story of many here) by finding the thread titled Who's Who. My mother died in '04 at the age of 88 about 2 1/2 years after I moved her into an assisted living facility (ALF), then to a NH (nursing home) after she wandered away from the ALF. By then, Mom didn't know me, her own furniture, the church she'd attended for 30 years, day from night, how to read a clock (and a million other forgotten things), and probably didn't know straight up either.

First, you must take time for yourself and your family. It's not fair to you to work all day and deal with your dear ditsy mother until you drop into bed. You cannot reasonably expect yourself or your dear family to keep watch 24/7 over someone who may go out the door at any minute. You each need a break! Caregiver, care for yourself. Really, dear.

2nd, this is a NO GUILT area!!! None of us gave out loved ones this awful disease and, so far, none of us can cure it. We just do the best we can each day, make the best decisions we can because we love who they were, and refuse to feel guilty because we cannot do everything - including finding that cure.

Please look into adult day care in your area, if not an ALF or AD Center or NH (nursing home). In a day care, your mother will have pleasant, simple activities and a meal, plus she'll be safe, make other ditsy friends and have a good time. What could be better?? She would not want you to harm yourself on her account. Please give yourself permission to do that because someday it will become too much, too sad, too exhausting, too heartbreaking to handle. One day, it will happen. You cannot drive yourself 24/7 as she will need. It's okay to need help. It's okay for your mother to live in an ALF or NH where staff is awake 24/7. She will not care less. Not only that, but The Imposter is often mean, insulting, and says things that hurt. That's hard. As we say here, sad, but true.

From what you've written, it sounds like you're already about at the end of your rope. If you're not ready to move your mother into a facility full time, there are many places that offer "respite care" to give you a break for a week or more. Please consider that for the sake of your health. It's okay. It can even be for the best. Really.

Please visit the available facilities in your area, choose the one that seems best and affordable, and put your mother's name on the waiting list. When you give out and give up, you'll be glad you already did the research.

Since you have DPOA, you can sell her home to pay for the costs incurred by her care, if cost is an issue.

Sorry if I've been pushy or said things you'd rather not hear. Please keep coming back and talking with us. Read our stories. I'm sure others will chime in soon. Sally is in Australia and is usually the night shift here!

Again, welcome. Wishing you well - Barbara :wave:

Jess - Hi and ditto Barbara.......we are all sorry you are here and have to deal with so much! After I read your post, it made me feel guilty for thinking my life was in the toilet! I don't care for an AD patient, but my 58 y/o hubby has memory problems and who knows where that will go. He's hard to live with! But I do feel for ya and glad you found this site. It is such a blessing. I kind of hurried through your post as it is late here and I am getting tired, but did you mention trying to get your Mom placed somewhere? You can't do it all. It will end up taking you and then your Mom will get placed anyway. Your health has already suffered. You all need a break, perhaps a weekend away with hubby? Try and be kind to yourself, as that is what your Mom would want if she were in her right mind, I'm sure. Blessings dear, and visit anytime with anything on your mind. Cindy

Oh Jess, me too, sorry that you have to be here. But it's a good place to be.

Everything Barbara says is so true. I know it seems difficult to even think of moving them some place else when you're overwhelmed with all their needs of daily living, caring for a family and working a fulltime job, too.

But it does reach a point where you have to think of your own health.

My mom is the same stage as yours, cursing and yelling at me for not taking her home. I've been hoping it would end, but it hasn't and I'm simply worn out.

I have a list of group homes in my area that do take AD patients and I've promised dh that we will visit a few this weekend.

It breaks my heart, I keep thinking I haven't done enough. But now my own children (all grown) are growing angry about it. I was crying this morning when my oldest daughter called and I got a good long lecture from her.

I haven't had my grandchildren over-night in months, I haven't been out to dinner with dh in months. We can rarely talk privately because mom stays up till we go to bed. It takes its toll.

And, I finally believe Barbara! We have to take care of ourselves too. Our children want us around for them. I finally heard my daughter when she said this to me this morning.

Hang in........take care of yourself........and follow Dr. Barbara's orders.

No guilt! We have to take care of ourselves, too. so that we can be there for OUR children, whether their grown or not.

Dear Jess,

((((((((((((HUGS))))))))))))) welcome, but sorry you have to be here.

I did what you are doing : full time job and taking care of my Mom at night, weekends, holidays etc etc .. climbing walls and never getting rest, except that instead of losing weight I ate 'comfort food' and got heavier!

Dear Jess -- do you see that perhaps your sister was right? (ducking to avoid smack) ... think of your life if Mom were in a good, caring, supoortive nursing home. My mom finally wound up in one and it was a great relief to all. And she is happy there.

I would say you have done your part by caring for her for sooo very long (one day is long!) and now it's time to gently but firmly move her to 'her new room" over her protests. Look into NHs in your area, choose one where you feel comfortable and enlist your sister's help to move her in. (It is OK to say, listen Sis, I tried so hard to keep her at home with me, but it isn't working, now that she is so much worse. You may have been right all along; lets be friends again? Can you help me get her settled in a new place?)

Having done both - full time care, full time with HHA coming in, and now NH care - I have to say Mom is way happier now. She has no decisions to make, nothing to organize or throw out - she drove me crazy rearranging everything and throwing out many good items - she is well fed and cared for, staff understand her and are trained in how to deal with her.

God bless you as you make your decison ..

Love,

Martha

The responses make a lot of sense. Finding a NH where she willl have 24-hour care, balanced meals and medical attention when she needs it may be the most loving thing you can do for her right now. This isn't a daughter's failure, but a daughter's gift of love to her Mother. You will continue to show your love and support for her by visiting frequently, monitering her care, and taking care of her family the way she would have wanted you to do when she was well. Over and over again you will read stories from caregivers who stretch themselves until the point of collapse trying to match the care of experienced professionals, believing that their loved ones would never have wanted to go into a nursing home -- but AD is a degenerative, terminal illness (oh, I hate this disease!!!), which sooner or later reaches a point where professional caregivers are necessary. Sometimes it's also a quality of life issue, since professionals might offer special activities, foods, schedules, and other benefits that it would be difficult for a family member to match even if we were full-time.

You can't expect your Mom to agree with an assessment that it's time for professional care, because she is not able to reason fully due to the disease. A loving parent would not want to put their child and grandchildren through hell, and if she were sensible she'd understand that there's a time for everything -- including nursing home care.

Very good suggestion to try to reach out to your sister, and your children's aunt. Consider telling her that she was right (even if she wasn't right at the time.) She may need to have contact with your Mom through the long good-bye too. If the family can come together now, it will make the hard times to come a little easier. And if not, you will at least know that you tried.

Well said Beginnig!

Hi Jess and welcome!

You are the caregiver-ever placing everyone else above yourself. You were born with that trait just as I and the others here. Unfortunately, we caregivers expect the best out of ourselves all the time, never allowing anything to go wrong and if it does, blaming ourselves. After all, we're the caregivers. We HAVE to take care of those in need. Right?

Well, yes to a point. But we MUST remember that WE are in need too. We have to take care of OUR needs before we can successfully help others.

You have a duty to take care of yourself. If you don't, you can't continue to take care of others. You'll eventually snap. You can't do all and be all ALL of the time. No one can.

Could it be that your mom senses your anger/fear/frustration toward this disease? Quite possibly. Maybe that's why she makes the remarks about being a burden to you. I've noticed in my family members with AD that they tend to sense our moods and can sometimes even sense my mood when I'm doing my best to cover it up.

Don't let yourself be consumed by guilt! Sending your mom to a NH or AL won't bring your mom back to you. But it will bring her daughter back to her. She needs her daughter (and by that I mean you). And sending her there does NOT mean you're giving up on her or letting her down. It means that you are letting go. You're not giving up! You're letting go. You're not letting go of her. You're letting go of the notion that placing her in one of these facilities is a horrible thing to do.

Sure, mom may go kicking and screaming and blamimg you for everything under the sun. But you must remember that although the face is the same, the person behind it is not. If your mother had known this disease was going to take over her life 20 years ago, I doubt that she would have said you have to take care of her no matter what it does to your health and happiness.

Jess. she would have told you that she would rather you be happy. I think you know that.

I do think your sister is wrong in not assisting you even a little bit. But maybe this is what she saw coming?

My suggestion to you is to check out some NH's and AL facilities even if you don't plan on putting her in one just yet.

And here's my order for today ;) Take 5 minutes for yourself to close your eyes and shut everything but peaceful thoughts out of your mind. Take deep breaths and relax. If that's too hard for you (it sounds easy but sometimes not), then take 1 minute 5 times today. And then take a nice hot bubble bath. You deserve it!

Love, Barb

:wave: Hi Jess, it's good that you found this board. I've lurked and read the posts for inspiration but haven't posted much myself yet.

I'm sorry you may have cried yourself to sleep.... :(

Just know there are others out here who are dealing with the same thing (different cases, same destination) and unfortunately some of the cases are much worse.

I've tried everything to keep mother out of NH. We even tried rebuilding our house for extra space to accompany her out of our own pockets. But once we started the work - she progresssed worse and got to where she didn't even want to stay with me. Cursing and crying everynight.

This eventually turns into wandering away, fighting, kicking and screaming.

We sold mothers house and vehicles to use the money for care-giving in my home and it ran out pretty quickly and she still remembered who we were. That was an awful situation and eventually we did have to place her , kicking and screaming and working against us.

I was close to your age when I began caregiving and suffered from insomnia, appetite loss, depression, bruxing of the teeth (grinding), and all sorts of other pretty stress-related disasters. My eldest daughter helped too and she also became stressed out and had problems that she shouldn't have ever had to have experienced.

Once placed, mother stopped fighting against the disease and the constant attention from nurses helped ease her I think and she eventually became unaware of everything. It helps and it doesn't - you never stop feeling the guilt and the sadness, but you know it's not your fault.

Your sister MUST become involved even if you have to guilt-trip her everyday. But know that the points she makes (while you may not want to hear them) are probably better for everyone in the long run. It's hard for us to listen to it because we think they don't want to be involved and are putting the load all on us... but we don't see how it affects them. It's easier to hate or blame. It's harder to love and understand sometimes in these cases. And you WILL NEED HER after it's all over even if you don't think so now.

And it is a major relief to know that you can move on with your life and take care of yourself knowing she can't wander away and is being taken care of.
I wanted to be the one to care for her until death, I promised I'd never placed her, but in the end - I had to and from support groups I've found out that this end is inevitable almost everyone HAS TO DO IT.

The sooner the better, because you could develop major health problems and problems in your family with husband and children.

Good luck :angel:

God Bless all of you who took the time to reply to my post. I cried when I read every one of them. Even the ones who gave me advice about still reaching out to my sister... even though at this time I dont think I can go there yet. Today I took mom to her house I spent the day cleaning it and Hired a friend of hers to stay with her for the weekend. I also have hired a care person to start staying with her every night at mom's home. I already have a daytime lady and she will continue to stay with mom during the day only now at mom's own house. Mom kept telling me over and over today while I was cleaning etc. that she never really liked having other people in her home and that she insisted she has never been scared to be in her own home... I held my ground and said I was afraid for her to be alone at her own home because she is elderly etc. just made up stuff and she said well okay we'll see. Im sure Im still in for a terrible battle but These are expeiranced care givers who were recommende to me by good people who used them in the past for their parents who have now passed. This is my last resort, It will be hard for me not to want to go rescue her so to speak and Im still not sure how I will feel every day about someone else doing her care... I will check on them daily and call regularly but I have to do this for myself now. I will try this and try to spend more time for myself and my dh and children.( I have had those lectures too from grown sons.) When the money is gone I will have to maybe place mom before I want too but in the meantime I will begin to look at some nh facilities in a serious manner so as to prepare for that next step which I know will come. (mom has now called twice already since I left her house a an hour or so ago) lost her purse etc....... oh well I have it covered and I refuse to get involved anymore today.... My dh and I will be going out for dinner later tonight with friends and maybe I will sleep fairly good tonight I think I will take a pill to help me rest. I'll see how it goes... Thanks agian all of your stories and advice is so sweet my heart breaks for all of us and especially because after all we go through and all we endure we lose the battle anyway...... soooo sad..... but I know I will somehow make it, I made it through my Dad's cancer and helping hospice wash his little 116 pd. body and dressing him for my mom and sister to come in the room and see him after he died I can get through this somehow, somehow.....

((((((((((((((((((hugs)))))))))))))))))) Jess!

Good for you!!! So glad you found a way to let your mother go back to her home safely. These helpers will make sure she has good food to eat, that she is warm, and that she is safe. There will likely be lots of hiccups in the days to come, but it's worth a try. I hope your two helpers' schedules will not leave your mother alone for a minute and do be sure they have your phone number. Your mother might lock her helpers out, too, so have a plan! Hummmmm...perhaps change your phone number?? :D

Enjoy your dinner out with friends and let one of your sons man the phone at home. Hope you'll have your favorite food plus dessert because you deserve it! Sweet dreams, too.

Cheers! Barbara :)

YES! You're doing it! You're letting go. GOOD FOR YOU! :)

And what a great way to do it! Mom can stay in her home while getting the help she needs. BRAVO!!!!! Good job!

Now may I suggest a safety tip in case you haven't done it already? Since mom is staying home and she has wandered at least once, consider putting deadbolts on the doors. If you don't like the idea of a deadbolt, you could put latch hooks near the top of the door where she can't reach them. Her caregivers could latch them so mom doesn't wander while out of their sight.

I'm so happy to hear you're going out tonight. Enjoy!!!! You DO deserve it!

Please let us know how your evening went. And rest well tonight.

NO GUILT! You did good. Your mom would be proud!

Love, Barb