How do I cope with 80 year old mom with dementia who is clingy and insists on being with me all the time?

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How do I cope with 80 year old mom with dementia who is clingy and insists on being with me all the time?

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Even before the dementia took hold, I was never "allowed" to see a movie without her or go on vacation with just my kids without her. Sure, she realized the importance of me spending time alone with my kids, but didn't understand why SHE couldn't be there too? She would tell me that she would never do that to her mother (her own mother died when my mom was only 15 months old. Clearly that made a huge impact on her parenting style with me).

She is now living with me. I spend FIFTY FOUR HOURS with her a week. When she is out with the caregiver, she constantly asks "where's Karen?" and the caregiver has found that a simple "she's out with friends" or the like, won't work. She has to say something my mother would approve of, such as "she's at the gym" (I"m overweight and mom has been trying to get me to lose weight forever!). I guess the thought is that if it's fun, mom should be there with me. I shouldn't be enjoying any time away from her. I should be including her. Well, guess what? I don't want to include her! 54 hours a week is MORE than plenty enough hours for me to spend with her!!

So here's the issue. I just can't do this anymore. I thought a good alternative to assisted living would be to hire caregivers to do as many hours as it would cost to do the assisted living. This would give me lots of free time.

I don't want to abandon my mother, but I thought that say, ten, twelve hours a week would be great on my end. When I discussed this with the caregiver (who found a new job and will be quitting us anyway), she said that might be good for me, but she doesn't think it will be good for my mom to spend less time with me.

I was just about handling the guilt, but now it's back again. Sadly, she's right though. If you were to ask mom, she would say that she doesn't see me enough even at 54 hours a week!

I'm just so burned out. Other than the paid caregiver, there's only me. No family other than us.

It doesn't surprise me that mom only wants me. I'm all she has ever wanted since my dad passed away in 2005. Her entire existence revolved around only him. Now it revolves around only me. Maybe he liked it but I HATE IT. I feel emotionally strangled to death. I feel her eyes bore into me when I come downstairs as if to say "oh thank God you're here, now I can breathe again."

I Love my mom. If I didn't I would just stick her in AL and never go see her again!
I want to do what's best, but is me seeing her less really best. It's best for ME, but it's not best for her. So, who matters more? Me or her?

I fear if I see her less it might accelerate the dementia as she will be more frantic not being with me as much.

Please help, I just feel so overwhelmed and burdened and guilty and resentful and unloving and wishing one of us would just die to get this over and done with.

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A lot has changed since I posted here a while ago. I HAD to put my mother in assisted living. I just couldn't take it anymore. Her primary dr. knew the strain this was all taking on me so I enlisted her help and got it. I checked out the AL places and chose one I thought would be best for her. I then picked her up and took her there and said that her dr. had said that she needed to come there for a little while because of the pain she was in because of her hips (insert any other medical condition here to fit your loved one's condition!). She has been there several months now and I am a different person.

I used to be angry at her all the time, and hate life, and not have ANY free time to me or to be me or to relax or to have fun or to...anything without mom.

That has all changed! I know see her 3 times a week. I love her just as much, if not more. I find myself to be MORE compassionate with her now than when I felt strangled to death.

If she was in her "right mind" she would have said to do this a long time ago.

To those of you who can change your situation. DO IT!! OH PLEASE FOR THE LOVE OF GOD DO IT!!

When faced with decisions in my life, this is what I do;

1. Remember what my beloved father would always say when he was alive, "You can't take care of anyone else until you take care of yourself."

2. What is the worst that can possibly happen in both options?

3.Am I ok with the results of both options?

Option number 1 was keep mom at home.
Worst that can possibly happen: I continue to go insane. Be miserable. Have no life. And just pray for a way out. And oh yeah, it wasn't even like I was even making mom happy! Not have a life. Hate my life. Hate it. Hate it.
Am I ok with that: No

Option number 2 was put mom in assisted living
What's the worst that could possibly happen: She wouldn't like it.. Also, I'd feel guilty.
Am I ok with that: Well, she didn't really like anything. She said she was going to hang herself because I had the audacity to merely mention the possibility of going on vacation without her. As far as my guilt, I felt guilty with her living here as couldn't live up to her/my expectations.

Final piece of advice I was given by a good friend of mine:

THROW OUT THE GUILT, and see what you are left with.

Hope this helps

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Oh, forgot one thing. Don't ask your loved one for permission e.g "hey do you want to go check out assisted living" if you know they are dead set against it. Instead, let them be part of the process, e.g. "Do you like this room mom near the beautiful trees and flowers or this one my the dining room?"

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before my mother died she didnt want to be alone for over 5 minutes at a time. she was scared and needed reassurance. i spent every moment with her and it leaves me with more satisfaction than regrets now that shes gone.

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Karenp Good for you! It sounds like you both are happy with your decision...

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Karenp your decision to have your mother go to assisited living was a brave and healthy choice for both your sake. It gives hope for those whe are also contemplating alternate living arrangements for their parents. Unfortunately not everyone can afford assisted living. Wish there was more affordable care for the elderly in need.

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My mother passed away three weeks ago. she was kicked out of assisted living after three weeks because a brain bleed caused some very disruptive behaviors, calling out, repeating names, and so on and so on. I ended up bringing her back home, because I felt like she would not be able to cope in AL.
It is different for each patient and caregiver. As difficult as it was to keep her at home with me, I treasure the precious moments that we could connect. I feel like the gift of the end of life love is one of the most important accomplishments in my life. Caregiving is not easy and we must take care of ourselves first. i could no have done it without hired help in the home and hospice guidance. I pray for the caregivers on this journey with their loved ones. In the end, we need to feel that we honored our loved ones with the decisions we have made. One shoe does not fit all. God Bless!

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I too am reading about myself here! The only difference is, my Mom died when I was 18 and now I am the sole caregiver to my husband's mother! I am having a hard time of it because not only do I have her ( 88 with borderline dementia and hip surgery in April), I have my controlling husband, who Mom can't stand most of the time as he drinks too much like his Dad, 4 cats, 3 parrots, a rabbit and a turtle! I try to talk to my husband about my feeling suffocated and over worked but we end up fighting and he tells me to get a grip before I lose it! If I cater to Mom, the housework, shopping and cooking takes a back seat and then my husband gets mad at me. If I cater to my husband and be a good little housewife then Mom gets mad at me. If I say to hell with it and take time for myself which is actually a part time cleaning job with my neighbor, they both get upset with me! I wish I could just leave sometimes but the guilt would kill me! I need therapy big time!

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Jacky - What a situation! You do need therapy, but imagine what they would say about that!

I have an inexpensive alternative to suggest. Have you ever been to Al Anon? It's not just about your husband's drinking. Your MIL also has a disease similar to alcoholism that prevents her from being a rational person. You might learn ways to "detach with love" from both of them. You would probably still do as much as you do now to take care of them, but you could reduce your feelings of being trapped if YOU could draw a few lines.

It is probably futile to expect either one of them to agree to change the situation, so you have to proceed without their blessing to carve out some time and space for yourself. When you leave the house to go to Al Anon, tell your husband that you are going out for a drink!!!! How can he object to that? Tell your MIL that you are going shopping to buy her chocolates or nail polish or a romance novel - something she will accept. Maybe even tell her you need a break from her son!

Your husband, like most men, doesn't want to hear about feelings. Think about a demand/request for him, like getting an aide so you can have a break, or doing a chore that he doesn't hate, like laundry or vacuuming, or agreeing to "babysit" for an evening or afternoon so you can go out.

You know your husband best. He can ignore "fairness" and whining, but what does he do if you stage a temper tantrum? My husband hates them, but my father usually responded well on the rare occasions my mother would "lose it." Some people can agree to one specific change, when they can see the exact size of the thing they are agreeing to.

I understand how trapped and hopeless you feel. You need to start believing that you have SOME power to change things. Think about the tiniest baby step you could make to become a person with rights that they need to respect. Seriously, try Al Anon. They are your sisters and brothers.

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On the fantasy side, search for "I ran away. Now what do I do?" on this website.
https://www.agingcare.com/questions/caregiver-snapped-ran-away-159297.htm

This woman DID run away, just like many of us want to do. It ended up improving her life! It's sort of a fun read.

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Wow, how frustrating and sad to be going through so much...this might sound a bit far-fetched, but what if you installed a monitor so you could see how your Mom is when you're not there? Maybe she's actually fine and only shows her anguish at being apart from you when you're together...if that's the case, you would at least know you don't have to feel guilty being away from her...best of luck to you!

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Wow seven13! Your Mom sounds just like my mother in law! Love her but holy s&%# batman, give it a rest! LOL.

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Jackie, I feel for you. What you need is a divorce...from both of them.

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StandingAlone,
That was my first reaction too

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I think we need to petition for a National Caregiver's Day where we all get the day off to do what we want. We don't even get an evening off most of the time and forget about vacation! We just had a family reunion in July and Mom wanted to go with us. 364 days a year she HATES "them people" ( dad's side) and has nothing nice to say about any of them. The one day of the year we get to enjoy "the other side" of the family, she's upset we don't take her! Go figure!

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Clingy and wants to be with you, whats wrong with that, I think thats pretty normal for someone who is scared and doesnt feel well, even my dog does that when she is sick. I think about my Mom and how she must feel to want that. Putting myself in her shoes, she lost her husband, the love of her life, now she is confused with dementia,she cannot walk or take care of herself, eat, can hardly see, and doesnt even know names anymore, how sad is that? I know its not easy, for damn sure, Ive been doing it almost 6 years, but what would we want? This stage will pass, I've been thru them all. They cannot help it, their poor little mind is so confused and out of whack. As hard as it is, I refuse to ever lose my patience, I hire a caregiver to take off some of the burden, and will love and be at my Moms side till death due us part. Her doctor told me to keep Mom warm and comfortable and most importantly, just being with her is what she needs most. If I take time off, have someone there so when she lifts her hand, its always held. I hope I get the same when I get that old, if I ever make it. It can work, you just have to be the manager and make it work with the proper planning and a strict schedule. Most parents get ss, they can pay for hired help for us to get a break. I can get 2 hour morning help bathing her and 10 hour weekend help, I feel like a new person when I do, and I get to choose the right person. No one can take that feeling away from me of how great I feel (especially when snowing out) when I get to tuck my Mom into her warm bed, kiss her and tell her I will be here all night. She mutters out thank you, I love you, a few of the words she can sometimes still speak. I know someone will get mad at this but she was the best Mom ever to me and would have done it for me. I do understand that if she werent a great Mom that I might feel differently about this whole situation, as some of you have to, and I do understand that, but she was always there for me. Yes, our lives are different, and you could say they were on hold but now if we've adjusted.We bought an old wheelchair van and get out. We take her on our vacations, diapers, hoyer lift and all. I had to retire from my job. We are in our late 50's and luckilly I do have a great husband who helps me change her every night and he understands that we have to go with our hearts. Please try and remember how they are feeling when making such a huge decision of sending them elsewhere. Bless you all

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I certainly do agree that one size does not fit all. My situation was one of desperation and misery and with no family members at all to help fell squarely on my shoulders. I visit my mother often at AL and advocate strongly for her, do all of her laundry, bring her ice cream, take her to my house and out to dinner and love her.

The only difference is that I am also able to find time to clean my house, go out with a friend unencumbered by thoughts of my mother continuously playing over and over again in my head, start my own business, laugh once in a while and ..breathe. I was not able to do any of those things before. I made the decision that I DESERVE to smile.

When I get old, OF COURSE I want my children to be there for me, to love me, to fight for my needs, to kiss me. But to what extent? If my wants (e.g. be with me ALL the time and never leave me. Never. Ever) are so overwhelming for them that they want to kill themselves JUST to get out of the torment, then that is NOT what I would want for them. IF my mother was in her right mind, it's not what she would want for me either. The problem is that at an old age, some people can become self centered and do not think about how their actions affect others. And dementia exacerbates that. I expect to be the same way if I live that long. I also expect my children to spend SOME of their time with me, but to have a life also, otherwise what's the point in living?

To those who held their mother's hand 24/7 until they died, good for you. Truly. I really mean that. If my mother didn't have all of the disabilities she does, if I had a family to help out, if..if...if.. then I would have loved to have been in that situation also. Hugs to all of you wonderful, kind, loving daughters and sons.

I think that some people wrongly think that AL is prison. It's not. She just lives somewhere else. Big deal. If I want to spend 24 hours a day with her I can. I can take her out whenever I want to. The only difference is that I now have time for me, and I deserve that. The stress was killing me. Now I feel I have a life.

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Karen, I'm with you 100%. You did the only thing you could do to save YOURSELF, and thank God for it. Because you're better for it. And so is your mom in the way you now feel FREE to loving care for her, and you're doing a damn fine job. You have nothing to justify as far as I'm concerned. You did everything right, for all the right reasons. You've got a great head on your shoulders, and you're full of good old common sense. Amen.

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karenp - good for you - you are taking care of yourself and doing what is right for you and proving care for your mother. I totally agree that a facility is not the worst choice or is it prison or a "warehouse" as someone suggested. It is a viable alternative. It doesn't have to be one way or another is the only right way. To reverseroles and others in your situation, good for you. If you can make it work for yourself, your parent and your family, that is great. We all have to work out our own situations and everyone's feelings count, not just the ones who are oldest.. My mum has been mentally ill and demanding from day one of her life, and even having her to stay for a few days in my home was very stressful. I never considered having her in my home as she aged. She is now 101 and I am 76 and still caregiving though at a distance, but believe me that is stressful enough when you have a lifetime of narcissism to deal with. Like any relationship it is a matter of what works for the people involved. I think it is very important that we do not judge one another for our choices, and do not convey that one choice is superior to another. Walk a mile in my shoes.... I had to almost laugh at a nurse who I talked to on the phone one time mother was in hospital. She said we have enjoyed having your mother. She is a very sweet person. I didn't say anything but could have told her a story or too. Let her deal with mother for more than a few hours in a few days and find out how sweet she is. It is very easy to look at someone's else's situation from the outside and think you understand.

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@Reverseroles...what a positively beautiful dedication to your Mother...you are also blessed to have such a wonderful and understanding husband...how great it would be if everyone had such a terrific relationship with their parents and the love and caring that comes from being close...Blessings to you and everyone out there who is going through this...

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Im confused? I love my mum want whats best for her want her to be safe and well looked after either by me or a good NH. NOW if I CANT cope on my own with no help from family or state if my health is going to get worse and basically have no life for me does that make me a bad person?? CHAPEAU to you who have done this 24/7 for your mums but just because some of us cant cope does that mean that we love them any less and that maybe we are selfish? GOSH wish I had a hubby here to support me through any of this EVEN a neighbour sorry but just bully for you if this was a joy to do and you managed but dont think that those of us who dont have the help or feel we can cope with this love our parents any less. This infuriates me my mum did everything for US now im here desperate to help her on my own AND I know that my mum would not want me to give up my life to look after her 24/7 she has been sick ALL my life and she knows I love her if she gets worse I WILL have no choice but to have her with 24/7 care for my health and hers.

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My Mom has been living with us for 11 years. She is about to celebrate her 95th birthday. It does make you crazy to be the center of someone's life. It is suffocating. Her dementia is such that she cannot remember we went out the minute we are home. She has no idea of the day of the week or anything that is happening beyond taking her one morning pill and one nightly pill, which she checks on the notepad I set out for her every day. She checks it over and over again.

On Christmas Day, with a house full of family, she'll ask "What's on the agenda?" or more frequently, "What now?" Her doctor says she has vascular dementia. I keep wondering how long she can go on but apparently with such excellent care, it can go a long time. When you are 72 years-old yourself and your Mom asks where you are going, when you'll be back, etc. while sitting with your husband in the living room, it makes you want to scream.I have my family; children and grandchildren and husband who is a saint but I wonder the same. How long can this go on? I love that she is alive and physically well but the mental torture of her not being a fully participating person in current events and life is really hard. My Mom remains sweet and gracious to all. She thanks me daily for being with her. "What would I do without my little girl?" she says. My brothers and their wives have taken her over the years while we travel but now, as they have to think she acts much better with me (she isn't any better, she is just not with them) , no one really wants to take her any more. They live at a distance so it isn't as though they can run in and out to help. We had four children and this is harder than having toddlers who grow by leaps and bounds every day. There is nothing exciting ahead for her except deeper loss of mental capacity and perhaps physical impairment as well. I am in it for the long haul and hope I can survive.

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I guess your mother raised you with love and kindness and you are doing the same for her at the end of her long life. Many on here would be happy to put up with the constant questioning in exchange for such a delightful parent. I am not telling you to "suck it up" but be thankful for the small mercies you can enjoy.You say you have a saint for a husband and clearly he is fond of your Mom so try and find time to give him a little extra attention. Men tend not to be very good at asking for what they want.
Can you twist the arms of the brothers and their wives a little and find a way to enjoy some vacation time for just the two of you. Even if you just drop Mom off and just travel a little further it would give you a break.
Is there any kind of adult day care that Mom might enjoy. I am sure the staff would love her to death with such a sunny personality. You could even stay with her a few times to see how things are run and gradually ease out unless of course you also enjoy yourself. I will add that I am 76 and it would take a team of mules to drag me into "Senior" activities but maybe the time will come when I won't be so fussy.
i have not seen you posting before so if you are new welcome to the forum. You will find lots of loving compassionate and knowledgeable people here and even the chance to laugh.

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Wow, I'm in the same boat as many of you taking care of my 90 mother. She was doing fine living in her own home till Feb. of 2016. We found out my husband had terminal lung cancer (he passed way in August 2016) and my mother became more needy around the same time. Now she's with me all the time (I do have 10 hours of weekly caregiver service) and when she can't see me she calls. 10 times in 30 minutes is not unusual (she's just upstairs in the apartment while I'm working the office). Everyone is telling me I need support groups but no one is willing to stay with her. I have 4 sisters and there always say "We also have issues in our lives.) The answers above have helped and I need to look into either a home or more hours to help me out.

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How do I cope with 80 year old mom with dementia who is clingy and insists on being with me all the time?

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