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FranticGirl Asked September 2012

My real question in all my venting is: is my mom just being manipulative or is she really that 'out there'?

As a new user, I did that prior post incorrectly. I erroneously posted it as an answer to the FIL post instead of as a new discussion. Sorry. Will do better. : ) My real question in all my venting is: is my mom just being manipulative or is she really that 'out there'? That is what eats at me. I would do anything for her if she is really that bad, but I hate being used and I feel like that is what she is doing. I think she remembers easily what she chooses to b/c I see it every day. Then if it is something she doesn't want to do, she conveniently doesn't remember. I wish there was money to hire someone to do those things for her and I could just be her daughter and have no power struggles and just love her.

bandit8it Oct 2012
Oh, honey. I've seen that same variation of ability with my husband and it's infuriating. He was never manipulative, and he will lie now, if he thinks it will get him what he needs, guilelessly, because it's what he has left. Like a child. It helps me to think of it that way, because there is no more meanspiritedness in it when he does it now (or manipulation, in the adult sense) than if he was a five year old.
If she 'walked on water' all your life, then trust your memory of her. She must have been a wonderful woman...hold on to that now, and allow that memory to give you forgiveness for what the disease sends shooting out of her mouth. Sometimes it's not pretty, but it's NOT her. For me, at least, that made the worst of it tolerable.
I agree with Jeanne about the commode. It solved a world of problems in our life. So did very matter of factly putting him in "night pants" when he was having a particularly bad time, such as when he had a cold or flu.
Friends and family who should know better can be bone headed and insensitive, but there will be saints where you least expect them. DO lean on those people, let them offer you support and respite. Let them make a meal, or take over driving to church once or twice a week. It's not just for you. It will widen your mother's world, and that will make her happier. It did for my husband. Sometimes, the things I thought I was doing for myself turned out to be an even greater gift for him. Learning to accept help will save your health and your sanity.
Sending you warm thoughts.

jeannegibbs Sep 2012
Sobbing is appropriate. Dementia is a disease of constant losses. And it is very hard to know what to do. We can't "fix" our loved ones. We can only try to make the most of where they are at.

If your mother is not a manipulative personality, then I suspect her behavior is part of her disease. Many dementia patients can pull it together in front of company, or a doctor, or even in order to please someone so they'll do something the patient wants. This is so common there is a name for it. It is called "showtiming." This is not very likely much beyond the early stage, and it often exhausts the patient. This may be what is going on when she wants to go somewhere.

People with dementia typically don't "lie" -- they tell the truth as they see it, or as they want it to be. They are losing the inhibitions of polite social convention. "Lying" may not mean much to them now.

I suspect your mom is doing the best she can with the abilities she now has. Telling her to do something is unlikely to be very effective. Doing it with her, or doing something along side of her will get better results. Go for a walk with her. Do a sudoku while she does a word search, etc. But it looks like you already spend great amounts of time with her, and really, there is only so much you can do.

About the nighttime messes. What if you got her a bedside commode and put it right next to her bed. She is much less likely to miss the target with that and she can still avoid walking to the bathroom.

It sounds like it is time to bring in some additional help. I suggest that you spend a little of Mother's savings to consult an elder law attorney on her behalf. Learn your options. Probably it is time to apply for Medicaid, which has a program for in-home care (Elderly Waiver) as well as help with Nursing Home care. Even if you don't think she is ready for this yet, start the process of exploring. Better to do it with plenty of time than in an emergency situation.

I don't think that your mother is using you, in the sense that we usually think of that term. Yes, she is taking advantage of you, but she is fighting for survival, and her inhibitions are weakening. She is probably doing the best she can.

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marymar Oct 2012
An easy thing you can do right now is get that bedside commode. This is a must. Not only will it be more "normal", sanitary and easier than trying to pee in a butter tub, but it's bound to have the side effect of her sleeping better, not worrying about the ordeal. It may also have the side effect of her feeling better towards you and being less manipulative... she may be thinking in a passive-aggressive way that if you get tired enough of the nighttime messes, you'll buy a bedside commode.

b4j6 Oct 2012
My heart goes out to you. In my opinion, from what you've shared, I'd say your mother is not being purposefully manipulative. She has begun a very difficult journey; one that you'll be taking with her. And neither of you has a map to help you find your way. Dementia, of whatever type, is an enormous challenge; it's impossible to navigate this entirely on your own. The best thing you can do for yourself and your mother is, first to arm yourself with knowledge. Learn as much as you can about Alzheimer's and related dementias. Read everything you can get your hands on. Contact the Alzheimer's Association. Some local chapters are better than others, but they all offer some level of support and help. If at all possible, join a support group of Alzheimer's caregivers. It may seem as if you don't have time for one more thing, but really, you can't afford not to do it. There are many helpful websites that deal with dementia. You can do this, but you'll need to accept that your mother can never be the mother who walked on water again, and that you can't walk on water for her. Good luck, and bless you.

Sooozi Oct 2012
This is a great question. My mom goes "up and down"... her words. I've asked her what is happening when she is in front of a tall handsome doc and is the most articulate, intelligent person in the universe, but when she is in the car with me or doesn't want to speak with someone on the phone, she is incapable. I think it is like most of us, she rallies for the audience. The unfortunate thing is that mom lives independently (with me doing everything 7 days a week), in a remote area where there are few neighbors and friends. When I was out the other day, I pointed that out to her and she said a friend stopped over with a book.... yes that was 5 minutes. Like the caregivers on this site who say they are losing their own lives, it is my opinion that we have to find ways to increase the interactions so that your mom can behave like an intelligent professor most of the time. Is it possible to invite people into the home for more interaction, so mom can help to prepare and show everyone what she did for the event? Cooking something... perhaps cleaning? When I have people coming over, my house is much cleaner than when we are alone in the house. Just an idea... thinking out loud, because I have similar experiences with my mom.... it's a little bit about isolation and depression, lack of exciting stimulation and recognition from others that puts all of us down in the dumps... I think.

PCVS Oct 2012
My mother doesn't often wake up when she has to urinate at night so I put her in two depends with a pad underneath for leaks. My first thought for you, as so many others had, was also "get a commode." I have one for those future times when she won't be able to make to the bathroom and adult absorbent panties are no longer enough.

FranticGirl Sep 2012
From FranticGirl. Mother is 85 . Has been diagnosed for 3 years, but may have had dementia far longer. Dr. Never actually said which kind it is. she lives about 4 minutes from me and I am her sole caregiver. I am her financial and healthcare POA. I see her probably always 6x per wk. Give 2-3 showers per wk. At my house as it is far easier to get her in the tub. Probably has approximately 17K in savings. Take her to all appts. And to church 3x weekly. Do all her shopping and cleaning her house and wash all her church clothes. I take her out socially 3-5x weekly normally. she has taken to urinating at night in plastic butter containers at night to avoid walking to the bathroom. She misses the mark and urinates in the floor partially. It smells up the whole house as well as all her clothing in her closet. I have repeatedly cleaned it all up and had everything spic and span only to have her do it again in the same week sometimes. I can't motivate her to clean her house and no one in the family even visits her anymore b/c of the smell ( and partly b/c of selfishness on their parts). I tell her to make notes of things and bought her pads and pens which she won't use. I have asked her to do word searches to stimulate her mind--she won't. Asked her to walk daily on a long safe lane beside her house . Nada. Refuses to exercise a stiff shoulder, just complains about how sore it is. Will blatantly lie about doing or not doing things when I know better. All the while saying how much she appreciates all that I do for her when I lose patience with her refusal to help at all when she is so strong physically. She can converse like a professor and most people would never know she even has dementia. I have tried makingnher a part of all decision-making, seeing if she would do on her own, pitching fits and throwing myself on her mercy, citing her love for me as her daughter. I do think she loves, but she is going to do exactly what she wants. The thing that tears me apart is---is she being manipulative (she will do what I ask if she wants to go somewhere) or if it is really a sympton of the dementia, then I feel like I am being hateful to a defenseless person. Has she always been manipulative? I always thought she walked on water so she may have been and I never saw it, but I don't think she was. I want to sob.

wayfarer1 Oct 2012
In my case, my mother was manipulative long before "old age". I wasn't aware and awake most of that time and didn't figure that out till I was 48, but there is my answer. If they weren't "gamey" before, and now they are and you cannot attribute the change to circumstances: like envy over money or not wanting to take responsibility for their life choices, then I'd believe it is organic disease -- of course a medical evaluation would be helpful.

orchidprincess Oct 2012
We got a bedside commode for Mom...Medicare will pay for it. She was falling at times, in fact, she fell backwards into the bathtub while attempting to use the toilet. The bedside commode is a must!

Enriched Oct 2012
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