Follow
Share

How do you know when it is time to find a place for a loved one with alzheimers when the are not the problem , 'you are'. I use to get on this site , but felt so guilty hearing all the love and sacrifice children were providing to parents, it made me feel even more, as I call in emotional turbulence. I have in the past 15 years or so dealt with helping my husbands family with chronic illnesses and dying, (shared by siblings), as it helped. The added during that time,, my own family woes mingled in with dealing with alcoholic father who it was impossible to deal with his cancer heart attacks , etc in and out of that, and a step mother who gave up every thing to take care of me at age 10. I resented being taken away from mother and acted out I know with my stepmother, who would complain to my father who would beat us for speaking ill of her, then I spent years taking care of them , and dealing with taking care of my stepmother during drunken spells.A childhood well spent with learning how to clean and cook for the household until we left home. I only mention that to build on why I do not have a bond with this saintly woman so many new I had. She was always depressed and had some illness or another. Well soon my father was hospitalized, violent, uncontrollable, and never came home, my mom moved in with us, now suffering with dementia and could not care for herself, then my sister developed cancer and she moved in with stepmother, husband and I , after 18 months, she passed away, we cared for her every minute. That has been 2 years, my stepmother's decline has been steady over the past 2 years, she can relate to us, knows us, is kind, never angry and sleeps at night, no trouble except she absolutely cannot do anything for herself, like pour a glass of water or put toilet paper in the toilet, you know the type. She is incontinent when you least expect it, and I won't even go into the bizaare behavior with that, but the next day my caretaker( who helps a few days a week), will take her out to eat, etc. doing great, she seems to enjoy it, although she never remembers what she did. I am saying all of this, because, I have "it" so wonderful, having her as she is, but we are miserable. Her constant wanting to be in the same room, otherwise hiding behind doors,pacing and never doing anything but picking on herself is driving us crazy. It is effecting our marriage, we have very few visitors, no family as such,comes to see her,( they all have their own problems.) My children are coming home less and less, I am becoming less tolerate. to be honest, I am tired of being the good guy," to gently help her to her end," when i will probably leave this earth before her. I work full time and my husband handles things until i get home, I do have a sitter who relieves him several days a week and we can hire someone to be with her when we want to go somewhere. so why am I complaining. Ideally, I would live in a bigger house , afford a full time sitter and all of us could be happy, but that ain't gonna happen. I have friends who , say, honey she ain't gonna change(I know that)you have to get a grip and learn to deal with it. I had to go on antidepressants to go through my dad and sister passing, but was living in a "brain fog",. I do not want to be medicated to enjoy life anymore, I thank God for my blessings, but I am tired , putting her in a nursing home would kill her, she is terrified of strangers. I know to put in God's hands and have faith and count my lucky stars that she is not cussing, mean or wandering, but guess what?, it is not enough and getting a week away is not either .I guess if I had the maternal connection to her it would be better tolerated, but am I wrong to keep doing it this way or will it be hurting her more ,dealing with my outburst ,showing, the feelings I cannot hide when she spreads you know what everywhere and say dear, You could not help it, it is okay, as you have to ck every trip out of the room. I know there is :" Nothing anyone one can say out there,that will cure me, but are you feeling the emotional turbulance too..... and to my friends who say deal with it, well this is how I do, complaining about it, :-)

This question has been closed for answers. Ask a New Question.
you have EVERY right to complain! I know of no one who can walk this road with someone they love and not feel like they can do no more! You MUST think of you and your family at this point...your loved one is at the end of her life, you must not let it be the end of yours from caring for her. If you can place her in a facility that deals with dementia, then they will be adept at handling her fear of being in a new place. Do it so you can enjoy life again. No guilt. You have done more than many would do. Time to put her in a facility, in my humble opinion. (I was there with my own mother).
Helpful Answer (2)
Report

How do you know when it is time to find a place for a loved one with alzheimers when the are not the problem , 'you are'.

When a caregiver asks this question, it is usually WAY PAST TIME to find another time for a loved one with alzheimer's....and from the other things you have shared, it sounds as if it is WAY PAST TIME...and you don't need anyone else's opinion or agreement or permission to do it. Just do what you already know is best for you and ultimately for your stepmom as well. Research your options and purchase the best care you can possibly afford.It will be best for your stepmom AND for you and for your family. Blessings and hugs, G~
Helpful Answer (1)
Report

Thanks to everyone who took the time to be so supportive. I wrote this when I was at my lowest for that moment, I know I will have to start looking for a facility. Everyone's supportive statements have given me some peace with the decision. Of course , she has cyclyed into a managible state once again, which is a blessing with some medication changes.
But I will get busy looking for the right place for her so we both can enjoy what time we have . I hope for those who are facing the decison , peace and strength
and remembering we know why we are as we are shaped by past, but, hopefully in the end we can be proud of how we handled it and put it away and survived happy. Thank you all, such a blessing
Helpful Answer (5)
Report

Oneda - my answer is YES, I deal with the emotional turbulence everyday. My common sense tells me that I have and still honor my Parents, now Mom by ensuring that she is safe, over seen, fed, bathe, clothed, clean and properly medicated in a caring environment. I have done the best that "I" can do but the guilt keeper in me causes me the emotional turbulence that you speak of. I further answer your question by saying know when to say no, I cant do this but I can do something else that will help I.e., facility placement, someone else providing full time care giving. If you are not physically or mentally healthy you cannot helpfully take care of someone else.
Take care of YOU!!!
Helpful Answer (1)
Report

So much good advice! Sometimes we forget that we are important and deserving of happiness and peace in our own home and lives. My mom is in a retirement home that she originally called "a prison". I know that her dementia will only get worse and the day will probably come when she doesn't know me, (family history), but for now we are working on her being content in her present situation .
She has improved over the last few months, I think partly because an old friend has been spending time with her and helping her cope. Something's she could not accept from me, her daughter, because she EXPECTS me to make everything right and make her life HAPPY. But she isn't living in the here and now most of the time, and unfortunately we have to make up our mind at some point to be content where we are if all has been done to take care of us.
I would NOT keep my parent in my home and live as you discribed if I had to get them on Medicaid to get them in a home! I am 69, have had a massive heart attack and damage to heart muscle, plus type 2 diabetes, as well as my husband, who recently had a cancerous tumor removed from his throat. It appears to have been "contained" in the tumor, but the decision hasn't been made whether to do chemo, but we suspect it will. Sometimes we HAVE TO take care of our own.
At this time in your life you should be having wonderful times with your children, not living in circumstances that drive them away. It is sad for us all, being in this place in our lives, and I know I will probably die thinking I didn't do enough!!
Helpful Answer (4)
Report

from kathyt1 - "Even in a home, you will still be a caregiver..."

TRUER WORDS NEVER SPOKEN !!!
Helpful Answer (2)
Report

It is time to find a good nursing home for your stepmom. No one can take care of an ALZ patient without a lot of help. It is better if they can get used to the NH while they still have some of their personality left. Stop complaining start acting, first find a memory facility in your area. Cut yourself some slack. Even in a home you will still be a caregiver, but some of the burden will be lifted.
Helpful Answer (2)
Report

Link to PACE needs to be copy and pasted into your browser. It is broken for some reason after the word "Who."
Helpful Answer (0)
Report

Look to see if there is a PACE program in your town. They do total care, medical mental and DAY CARE! Medicaid and Medicare pay for it. She might enjoy the socialization. Put your fear aside. It is what it is , and you MUST take care of your husband and kids. You can do this with sufficient help! PACE is a federal program across the nation. Save your salinity and check it out. Also, see if you have an ombudsman for elderly in your state. Great resource! Good luck love. Also, prayer is very powerful ;). http://www.npaonline.org/website/article.asp?id=12&title=Who,_What_and_Where_is_PACE?
Helpful Answer (1)
Report

Now is the time to place her! I just went through the same kind of stuff you are now going through. I finally put my mom in elder care and it's the best thing I did for everyone concerned. Don't let yourself be manipulated when she says she will die in a nursing home/whatever. My mother said that too- they all say that.
Helpful Answer (1)
Report

Just want to agree with everyone else--You life and happiness are just as important as hers. If she is so "out of it", that she is behaving that way with her waste, it is not going to matter if she is in an institution. My brother has "wet brain" from years of alcoholism, and was in a very nice ALF, who told his POA that they could not keep him there because it was offensive to the others who live there. He was moved to another ALF where he was in a locked unit. Eventually with medication, etc. this behavior stopped, and he is now back in the nicer ALF and is thriving there. You deserve to have a clean, sanity home, and peace of mind. It's very important that your years now are happy and fulfilling. Please don't judge yourself harshly. Anyone who has been there knows you have done more than enough and are a very kind person. No reason to feel guilty for taking care of yourself and your family. She had her life....please feel justified in having yours.
Hugs.
Helpful Answer (1)
Report

It has been more than a week since you posted your question. Since you have not updated, your current status is unknown so l'm gonna throw my hat in the ring to answer your initial question of how to know when it's time to place your loved one, not because of them but because if you...

My story is about my mom, who was quite a bit of a martyr even while being dedicated as we cared for my dad w/ Alzheimer's. He towered over her by nearly a foot. After 8 years into the disease, he sometimes became violent, often when he didn't get his way or when his bathroom hygiene needed tending to.

One of these bathroom times, he furiously came at my mom, shoving her across the room, knocking her out of her shoes and landing backward, fortunately on the bed. He continued charging in a threatening manner, hands and arms out like a troll or goblin - she had to raise her legs up and kick him off of her. He fell backward and onto the floor, she left his room and followed our contingency plan to lock herself in her room and call me. I was there in 10 minutes but it took 2 hours to come my father down. She was still not willing to consider placing him.

Within a week, she finally said to me that I better find a place for him. I thought it probably had to do with this incident, but noooooo. She said she had been trying to help him put on his socks and shoes and he had grabbed them away from her to do it himself. She was standing over him as he was leaning over trying to complete the task, ever so slowly in her opinion. THAT was her snapping point. SHE felt like beating HIM on the back, shoulders and head. THAT'S when she knew inside herself it was time to place him, because she thought SHE would hurt HIM !!

MY answer to YOU is NOW !! You've done enough. Don't wait for things to accelerate out of control, as they so often can in so many directions. YOU deserve health and peace and if those around you cannot see that and instead are silently encouraging you to maintain the status quo, you are the one that will continue suffering. This disease takes its toll. Don't be a martyr, even if it's unintentional and unconscious.

Please keep posting...
Helpful Answer (7)
Report

Oneda,
I can relate to all that you said. Not because I’ve had so many in my family pass, my father did pass away this year, but because I don’t have that connection to my mother. I know that she is your step mother but sometimes I feel that way about my own mother. I grew up in an abusive/alcoholic family too. It's a lot to deal with.
I know that at some point I am going to want to put my mom in a memory care facility and she will not want to go either. But, what can you do when it is affecting your own sanity and your own well being. If you get sick and die before her do you think that is what she meant for you?
I realize that your stepmom may not be the angry, violent type of dementia patient but having to take care of someone 24/7 is a toll on your psyche, your health, and your family. It's time to take care of you and yours.
At first you may think that stepmom won’t like being in a nursing home but I’ve heard many people say that their loved one ends up thriving there. Some it takes more time to adjust. It took my mother in law a year before she adjusted to being in assisted living.
At these facilities the staff are mentally equipped to deal with feces all over the place (don’t know how but they deal with it daily). It isn't healthy for your family to be exposed to that. Nursing homes have shifts of staff that are able to go home and rest inbetween taking care of patients. We as caregivers don’t have that luxury. We don't have that mental down time even on vacation or during respite care.
You are not a bad person for feeling this way. I feel this way much of the time. We do our best. BUT, we must also know when it is time to let go of the responsibility and the guilt, and let someone else take over their care. I am hoping that I will know when that day comes.
It sounds like you have passed that day. Find her a good place to go. Keep an eye on her care and make sure that she is being taken care of like you would like her to be. Know that you have done what you could. That is all anyone can ask.

Big hugs to you and yours.
Helpful Answer (3)
Report

Sorry , I have more.... more important than any cleanliness issue (that's just an excuse) the first answer said it all - your happiness is as important as hers, and it sounds like she's a lot happier than you are. If you visit daily and constantly there, (after work?) it won't be nearly as stressful for you as now, and she can still feel loved and cared for.
Helpful Answer (1)
Report

Perhaps you could take a health tactic and use the crap everywhere as an excuse (for her ears) to find someone who can "clean her when she can't help herself" instead of exposing her loved ones to such a health danger. I once had my whole family contract a 24-hr flu because I didn't notice until after they'd set the table that this person hadn't washed their hands well (feces under fingernails). Wish I'd said something sooner, the halls echoed with violent upchucks from grown men, and family avoided our house for years. I think we've finally lived it down. All due to crap being where crap shouldn't be.
Helpful Answer (3)
Report

Dear Oneda
With the rest, I totally agree with JeanneGibbs. It sounds like your heart has been suffering since you were 10 years old! And you have gone far, far beyond the line of duty and even love with all the caretaking you have done for first your husband's family (who sounds like they were relatively normal people) during their health crises - and you felt it helped. It didn't leave you suffering like your present situation is doing now. Probably because you had help (the siblings), you were younger then and not, like now, on the verge of collapse, and they hadn't spent years abusing you. No wonder you are phsically and mentally exhausted and desperate - two alcoholic "parents" and physical abuse for who knows how many years. From your post, I gather that your biological father is either in a health care facility or deceased. Oneda - caring for an elderly parent with even mild cognitive disabilities and who is (this is the truth) the nearest thing to a living saint IS exhausting in itself. It's definitely time to move your stepmother to a care facility. Every elderly person objects to going to one of these facilities, but they exist for a reason - and your situation is far beyond the reason. My elderly father, who had had a series of strokes and was mildly cognitively impaired (and with a very poor memory), finally realized on his own that he couldn't live in his home by himself. He spent 5 months with his youngest daughter who lives in a different state who was in the hospital fighting Stage 4 cancer. When it was time for him to return to his own city (actually a small town) it fell to me to find him a care facility. He had to spend about 4 months in a suite-based assisted living place before he came to the top of the list for the Veterans' Home in his town - where he moved about 6 months ago. Since my mother's death in 2003, he had done thousands of hours at this vets Home so we expected a halfway smooth transition - which there hasn't been. All I'm trying to say is that even when you've had the best parent and love them very much, caretaking is exhausting, saddening and it often seems you can't go on. Please, please do not continue to sacrifice yourself,, your marriage, your children, your extended family and your friends to the thought that you HAVE TO carry on until your stepmother passes peacefully. Act now to find a decent care facility for her - and, no, it will NOT kill her, even though she may not life it very well for quiate a while. It's YOUR time now - and if you do not take it, you run the very real risk of developing a serious illness or worse. You ARE a loving person. You ARE a hero. And it is very hard for us women to let go of our feeling that we have to run ourselves into the ground - literally - or we are bad people. You have absolutely nothing to feel guilty about in regard to your stepmother. You are actually doing her a favor by moving her to a place where there are professionals who can give her the exact type of care she needs - and you can act as a supportive family member. Please let us know how you are doing. It will be very hard for you, but it something you must do to preserve your life.
Helpful Answer (1)
Report

I think you need to step back and care for yourself as you have experienced too much or an overload of caregiving. See if there is a NH which will take your stepmother. As far as the childhood issues, perhaps a counselor to come to terms with it. Remembering none of it was your fault from childhood. Without the daily caregiving of your stepmother, you may be able to find peace with the shortcomings of your childhood. Often broken, blended families have issues which result from divorce or early death of a parent. However, many people have come from less than stable upbringings including in tact families where the parents fight all the time. Parents get caught up in their own drama and tend not to put the needs of their underage children who are caught in the crossfire first. It would be so much better if they could but millions of parent don't so yours are just part of that group probably.

Either way you have been the good sister, daughter and stepdaughter--now it is time to be good to yourself, your spouse and children--it really isn't a sin to put yourself and your immediate family first. Take care, place your stepmother in the best NH you can get for her given probably limited space and perhaps funds. Time to move on.
Helpful Answer (3)
Report

As usual, I totally agree with JeanneGibbs. You've done more than your fair share for your family. Now it's time to take care of yourself for a change. You don't have to give up your life or your happiness to care for others. Your mental and physical health are just as important as your step mom's. Get her into a facility where she can be taken care of and you can get your own life back with your husband and children. Please keep us posted on how you're doing.
Helpful Answer (1)
Report

You sound exhausted, physically and mentally. No, you are not a bad or neglectful person. The above advice from jeannegibbs is excellent --- go about your life and take care of yourself as you have done all you can to help this woman. Let the professionals do the rest---there comes a day and time when others have to pick up the burden. Just don't feel guilt over a decision to put her in a facility. Best of luck and start to enjoy your life again.
Helpful Answer (5)
Report

In my case, I can continue care at home as long as mom will still go to her day program. I don't know what I would do without it.
Helpful Answer (3)
Report

My mother used to say that you can take care of someone at home until they become incontinent. Of course that's not an ironclad rule, but it's a useful guideline. Find the best place you can for her, regain your home and your sanity, and visit her in her safe, clean, entertaining new home.
Helpful Answer (6)
Report

"...so why am I complaining?" Because, oneda, you are miserable, you don't want to stay medicated in order to be happy, this is impacting your marriage, your social life, and you relationships with your adult children.

When is it time to place your loved one in a care center? Now. Because your life, your family relationships, your happiness is every bit as valuable as hers. It was kind (I'd say noble) of you to attempt to give her a home under the circumstances. But it is simply isn't working out. It may not be her fault, but it is not yours either. You deserve a chance at peace and happiness in this part of your life.

Here is something therapist Pauline Boss says, in her helpful book "Loving Someone Who Has Dementia":
"Taking care of someone who years before was abusive or neglectful of you is beyond what is expected of you. Caring for a family member who was or is physically or psychologically abusive is dangerous. ... These are justifiable reasons for NOT being a caregiver."
...
"with most, I encourage some kind of continued management -- often through social worker -- to make sure that the caregiving team or the nursing home professionals are treating for family member well. This may be the vest you can do given your history together."

For your sake, I suggest that you continue to take an interest in her well-being, and to advocate for her in her care center. But in my opinion it is definitely time for care center placement!
Helpful Answer (14)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter