Dementia, diabetes, depression, stubborn, combative and manipulative. An unlikely combination.

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This may be a bit lengthy but I haven't found this combination in any of the forums I've read yet.

My mother, 83, suffers from Dementia & Alzheimers. She has been an insulin dependent diabetic for almost 30 years. She is an absolute control freak, always has been. Extremely manipulative, especially with Dad. The depression is worse than it has ever been.

Here's the scenario. My father is still sharp-as-a-tack and strong as an ox in some aspects. But weak as a kitten in others. Mom is sliding downhill fast in all aspects of her physical state. It was Dad's idea to move to an assisted living facility 3 years ago when Mom broke her OTHER hip (first hip broken 15 years ago due to diabetic episode ... blood sugar drop equals falling down). It took Dad 3 days to get her to agree to have it checked out. Prior to this she would spend days in bed. Never left the house. Rarely even got dressed. Her typical excuses were "my back hurts" or played the diabetes card "my blood sugar is off".

Once they moved into AL her dementia began to progress even more rapidly as did her general physical condition. At the present time the services they receive at AL are weekly housekeeping (yeah, right ... check out the ants, not to mention the urine stench in the bathroom), twice weekly laundry, medication distribution for Mom (not Dad .. he manages his own), and meal prep. The meals are not diabetic friendly and as a result Dad is spending an awful amount of money eating out daily for lunch and dinner. Oh, did I mention Mom only gets out if someone besides Dad is there to press the issue?

So now Mom spends her time in the recliner under a blanket watching TV. My sister, who is there during the day almost every day, does her best to get Mom out and downstairs to the cafeteria for lunch. She gets from their front door to almost halfway to the elevator (only about 10 yards) and starts "I'm so shaky. I'm going to fall. I need to sit down" because she absolutely refuses to get any excersize.

If she doesn't want to do something she will go to any length to make sure everyone is sorry for making her do it. If she doesn't want to go downstairs for lunch she will spit her food out or start carrying on that no one cares about her. We have to keep Dad away from her during meal times so she doesn't steal his food. Again, Mom is diabetic, and Dad has a sweet tooth. I have seen her reach to his plate and just take whatever she wanted. That's when we have to step in to play the bad guy "No Mom, you can't have that. It has way too much sugar". That's when the crying starts ... "That's not fair. Stop picking on me!" and the tantrum begins.

Being as weak as she is has resulted in several falls. Dad usually ends up picking her up but as his arthritis progresses this is getting harder and harder to achieve. When Mom leaves the walker on one side of the room and falls while walking towards the other side of the room she will somehow make it Dad's fault. She keeps him awake all night and then HE apologizes for not letting her sleep. He is so conditioned to take the blame that he is no longer able to stand up to her and say no. If she wants a cookie he gives it to her. If she doesn't want to take her medications HE doesn't force her.

It comes down to this. My sister and I can't be there 24/7 to run interference between Mom & Dad. Mom needs excessively more help than they're getting at the current AL. Dad physically cannot take care of Mom on his own. Mom will sit in the chair and soil herself just to make a point that she is the one in control.

Then we have the head games. I don't know how much of this is dementia and how much is Mom playing games. She whispers to Dad (who has basically been deaf since an incident while in combat in Korea) and then gets mad when he doesn't respond. She doesn't grasp the concept that my children are grown with children of their own, she's constantly asking how my "Wee One's" are. A very specific incident took place recently. I had taken my grandson with me to take Mom & Dad out to dinner. Mom always puts her best face on with the children around. Mom asked my grandson approximately 5 times during a 20 minute time span "How are you doing in school". His response was "Why do you keep asking me that?!". Mom didn't bring it up again. That's why I question how much is games and how much is real.

ADVICE PLEASE HELP!

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Help4Dad, You do not know my situation any better than I know yours. I have spoken the truth about my situation. Your extreme stupidity in judging anyone here without walking a mile in their particular shoes is obvious will cause more harm than good. Have fun putting other people down like me. I'm glad you have so much extra energy.
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Taking care of oneself first is easier said than done! Do not the majority of us caegivers (and, that is why the majority of "us" appoint ourselves to the "caretaker" role,) always fall into a situation of this manner? Not only have I always felt the need to take care of my parents because dad and mom worked themselves everyday of their lives to support us children, but, I feel that it is me and other family's obligation to care of my parents when they can no longer take care of themselves! The majority of us that become "caregivers" are at the bottem of the "totem pole" in the family. With my particular case, my siblings lived in MI, worked for dad, lived less than 10 minutes from them, and they ripped him and mom off to the point of him losing their 3 businesses! (I met my husband back in 1971: he is a native Floridian, and that was 42 years ago.) I never depended upon mom and dad to provide me with anything after I left home and married. However, my siblings remained in MI, only cared about themselves, and ripped mom and dad off enough to have them lose their 3 Sunoco gas stations in the subs of Detroit! And, it was me that had to pay for plane tickets each time that I wanted to visit or fly out of TPA whenever mom and dad had any type of problem! Also, I had to pay off mom and dad's IRS debt because family members' did not report their 1099 Form(s) to the IRS, and dad had a $40,000.00 mortgage on his house (plus the IRS debt that my husband and I paid off.) Since 2001, I've been "beating" myself up for letting these family members back into not only my life, but also mom and dad's lives. (My story is too long to even write it in a book!) God Bless you all out there, hang in there, and as I always attempt to remind myself, there are other caregivers out there going going through the same situation (and even WORSE) than any of us can imagine!
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Hey FedUpNow! Are you for real? Must be such a sad and lonely life for you. I don't think I have EVER experienced such an extreme level of selfishness as what you just stated.

I'm so glad my Mother didn't feel that I was a "waste of time". And she is not a "waste of time" for me!
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I've been thinking about how this experiment in extending our lives is working out. I for one don't want to walk around in an alternate reality torturing my children. I don't want to cling to life for the sake of living if it isn't a quality of life. It sounds like your mother has one of several typical relationships from the older generation and your father wants to be kind to her during their final time together. I would let him do what he wants and try not to advocate so strongly for him this way. The sense of injustice you have for your father and the anger or bitterness you have toward your mother for mind games, or soiling herself on purpose etc indicate to me that you are very invested in protecting your dad and forcing your mother to do things that she doesn't want to do. I agree with the poster that said to let her have the cookie etc. My father has diabetes and dementia. He is in NH and I started to fuss at him about the sweets but they adjust his insulin to compensate and I decided he was not about to change at this point. I agree your mom sounds like she is acting like a toddler but that is part of dementia and even if she was geared toward manipulation before it will probably be amplified but you cant change that now. You can support and encourage your father to be more assertive but if he chooses not to that is his own doing. We all have choices to make and the resulting consequence. He may view it as love and you don't define it that way. But I think letting go of the control of the interpersonal dynamic as well as being detached from your mother's dementia related antics is the way to go. Sure you can separate them and make adjustments but that may backfire because they want to be together. I agree about getting sleep meds.
My father calls me alot telling me how he has to leave where he is. That he is going to hitch hike back home. He wanders around the NH at night and the nurses can't do anything unless the meds are prescribed at a certain time. So when he calls me in the middle of the night, I call them and tell them to give him his prn atavan and it makes him sleep. I prefer him to sleep than to wander around fuming and fretting about how to get out of there.
I wish you all the best, all the good things and much strength with your parents. I am new here but finding out that this isn't easy. In fact, it kinda sucks to lose my dad's mind. Oh btw, due to my dad's agitation, they gave him depakote and other meds that are mood stabilizers and anti-depressants and he went from grouchy to calm almost instantly. I think we forget about the brain chemicals during aging. Just as his endocrine system doesn't produce other things, the dopamines and such are in short supply too. :)
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STOP trying to save your parents and save yourselves. This combination is universal. My mother-in-law, age 97 going on 98 has been like this since I married into the family 50 years ago! Death is nature's way of sparing the rest of us from other peoples' nightmares. They aren't meant to live this long and we should stop leaping through hoops, wasting our lives to make sure theirs are great. My MIL hates me, hits me every chance she gets, and expects us to make her happy. Guess what, old lady, being happy is YOUR job. Not mine. I've got enough to do taking care of several other sick relatives. If you don't like your life, Drop Dead. Do not Pass Go. Do not collect $200. Every minute you spend trying (but not succeeding) in making someone else happy is one less minute you'll never get back in your own life. And you aren't going to get ten more minutes on earth because you used up YOUR time taking care of someone else!
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WOW! A lot of long answers to this one, so I will be brief. In the same facility, transfer your mom to the secure side (for dementia). Your dad can visit and leave when he wants. Food will be prepared according to diabetic regimes, staff will get her up walking, and she will get exercise. An anti-depressant can be prescribed for the depression as well as an anti-anxiety med. Backs hurt when one lies down all day, so being vertical is best for back pain when her hip can take the pressure. Osteoporosis is probably present so her back pain is real. Giving codeine will only constipate her making the feces very hard and painful. So, she probably is miserable physically and wants help and with dementia doesn't quite know how to express it. Your dad is an enabler, and maybe secretly wants to sabotage her diet. Talk to both doctors (or same one) and see what he/she suggests. This is not an easy solution. Best wishes.
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"FREE YOURSELF FROM DYSFUNCTIONAL PEOPLE BY REFUSING TO TRY AND CONTROL THEM."

This mind-stopping quote is a sub-head on a column in Oprah's magazine October 2012 issue. I keep the article handy to help retrain my mind to this perspective whenever I start to feel like a victim of my 94-year-old mother's manipulation and game-playing.

Of course she was that way long before showing signs of dementia. But at this point her lack of impulse control and impaired judgment cause her to think this sort of behavior is a good idea to indulge in most of the time. I believe she has genuine incidents of confusion and disorientation and then she takes these and turns them into performance art.

If I react to all this, I find myself sliding down that slippery slope to madness. A friend suggested ignoring these behaviors rather than reacting/over-reacting. That was helpful. And now I'm working toward true detachment which to me means not only keeping my mouth shut but also being at peace about it. My theme song is "Let It Be" by the Beatles.

The reason I bring this up in the conversation about help4Dad's mother is to strengthen the argument in favor of getting the mother away from the father and also to offer a resource for self-care for the siblings. People like our mothers feed on weakness, as do all tyrants. She needs to be cared for, but her attempts to upset those around her don't need to be indulged. Perhaps the family is in the habit of letting the mother dominate. But clearly it doesn't work any more (if it ever did) for her to be in charge.

It's hard not be be drawn into the seductive drama of it all. A technique which strengthens me at such times is to get back in touch with my love for Mom and gratitude for her giving me birth. Being able to make this shift is a work in progress and sometimes I notice too late that I've already been drawn into her ongoing strife. Whoops. Try again.
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Your Mom sounds like my husband only I'm the "victim" here of his manipulation, etc. He, too, has dementia (Lewy Body Disease) and diabetes. He won't do any exercise, even a walk...always too weak, too tired, too dizzy, too anything just so he can just sit. He won't use a cane or a walker. His pride has always gotten in the way of his good sense. Our relationship has always been one that I gave in and even if I didn't, he did what he wanted. I should have left him years ago. Why didn't I? Because I was tired of starting over...I was twice divorced when I married him. Now I regret it. I am having anxiety attacks and I am so emotionally raw that I can't think straight. I am trying to get in-home care for him, but I can't even find the courage to make the calls. I think the last suggestion from jeanne was the best...get your Mom into a separate unit from your Dad. Her behavior is going to do much harm to him...mentally, emotionally, financially and physically. I am relatively young in this situation (61). I would guess your Dad is in his 80s. I know this is killing me. I can't imagine what it's doing to your Dad. Save him. You can't fix your Mom or their relationship, but you can help your Dad have some semblance of a life, of normalcy if you can get your Mom the care she needs separately from your Dad. I wish you luck and blessings.
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What would the third party do? If Mom is waking Dad up to ask about the magazines, how could someone stop that? I'm trying to visualize this. Separate bedrooms, and someone to prevent her from leaving her bedroom? That might work. Could they get by in a two or three bedroom apartment, with lots of in-home care? Could they afford that? Could all the reasons they moved into ALF be met with in-home help? If so, that might be a viable option.

Have you discussed your mother's nighttime restlessness with her doctor? What you are describing is dementia. My husband was up many times during the night and I'd have to be up when he was. I certainly could not have continued as his caregiver if we couldn't resolve that problem. His doctors understood how critical it was, and came up with a treatment plan (drug) to help him sleep through the night. That allowed us to stay together for the 10 years of his dementia journey. You could perhaps help your dad by finding a doctor who takes your mother's dementia seriously and tries to work on symptoms, if she doesn't already have one.

Your mom can put her shoes on. She likes to have her husband do it for her. She has dementia, which robs her of many social filters. She doesn't think, "it is really not nice to expect Hubby to do this when I can do it myself." She thinks, "There is Hubby. I like it when he puts my shoes on." Who can do something about that? Your father. He can decide whether he will say, "Oh, honey, you can put on your own shoes, and it is good for you to stretch a little." Or he can decide, "Sure, I'm happy to help you out, honey." His choice. Not much you can do about it, except explain to Dad what his options are. (I chose to help my husband with his shoes. I refused to repeat myself and just pointed to my ear meaning he should put in his hearing aids. We all pick our battles.)

With the dementia, Mom is losing so much of herself. Impulse control is leaving her. Social conventions mean less. She is becoming more self-centered (because of the disease, not by choice.) She can't sleep through the night. Her reality is not matching up to the external reality around her. Dementia is much more than some confusion and memory problems. This is extremely difficult for her, and for those who love her.

If my husband caused a problem and then blamed me, I would often apologize. Part of dealing with someone with dementia is getting into their reality and not expecting them to get into ours. I would tend to say, "I'm so sorry I made you something you didn't want for breakfast. I thought I heard you ask for this -- I guess I didn't hear correctly. Do you want to eat this anyway, or should I make you something else now?" So it does not seem inappropriate to me for Dad to apologize that Mom couldn't sleep. The real issue is helping her to sleep through the night, so they both can.

Maybe back to independent living, with in-home help, would be a way for them to stay together with less stress on Dad. Are there two-bedroom apartments in there ALF? Would sleeping in separate bedrooms, with an aide to monitor Mom on a baby monitor be an option?

Is there a memory care unit in this same facility? Maybe placing Mom there, with Dad visiting for large parts of the day would be another option.

I sincerely wish you well.
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Its not that I want to "save" their marriage. I can only dream of finding someone as committed to me as my father is to my mother. But the strain she places on him is beyond what I can bear to watch anymore. Dad begs us to help him. As soon as my sister leaves in the afternoon Dad is calling me to find out if I'm coming to "visit".

I understand my mother's condition will never reverse and will only progress and get worse. My concern is for my father. She's killing him. He stays exhausted. Mom is perfectly capable, physically, of several things. Such as putting on her shoes. If no one is watching she will sit in the chair and hold her fee out for Dad to put her shoes on for her. She doesn't let him sleep. I was there overnight when she actually woke him up to ask if he was asleep, or what time it was, or if he loved her, or why he doesn't pay any attention to her, or where did the magazines in the bathroom come from, or what was he reading earlier, or where are they going to sleep tonight (had to stiffle a snicker at that one) and on and on and on. Then she belittles Dad for not letting her get any sleep and he apologizes for it.

Because we can't be there 24/7 we are trying to find alternatives that will allow them to remain together but have a 3rd party on hand at all times.

Any suggestions?
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