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.
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.
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.
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.
That was my first reaction too
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.
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.
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!
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
You deserve a life, you have more of yourself to share when you are fulfilled.
Be careful, break the pattern by regaining your independence. Bad family behaviors can be learned and repeated. Do it for yourself and your kids
Let the sulking begin. Don't bother to try to make them happy. That's never gonna happen!
PS try music and singing the old songs, or christmas ones they remember, they love it! If she can see, get some I Love Lucy and Lawrence welk dvds also, they love those too. (My mom cannot watch tv but makes her feet go to music)
Sometimes my mother says out loud that she wishes she was dead. I'm ashamed to say that I've uttered under my breath a few times, "me too!"
Thanks again. I guess my sanity (or what is left of it) is something worth salvaging.