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, :-)
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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."
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"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!
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.
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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
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!!
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.
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.
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