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!
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!
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. :)
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.
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.
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?
For specifics,
1) Your mother's combination of traits isn't really that unusual. ANYONE can get dementia, which means many people with diabetes get dementia. And there is enough stubbornness and control-freak tendencies in the population to go around to people with any diseases. The combination is no doubt difficult for the family, but not unusual.
2) I think Eyerishlass is spot on about your parents' relationship. You can't save or improve their marriage. You could give them breaks from each other once in a while. Don't always take them both to dinner. Occasionally take Mom out for lunch and a movie or Dad out for dinner and a ballgame. This may enhance your relationship with each of them, too.
3) You didn't mention insulin so I take it your mother is on oral medications for diabetes. My advice (I have diabetes) is to allow her to manage or mismanage her own disease. Nearly any meals can be "diabetes friendly" by using portion control and perhaps leaving one of the high-carb items out. Most ALF and NHs serve healthy meals. Dad should not have to be buying special things for Mom to eat, nor should he have to eat elsewhere (unless that is a handy excuse to go eat by himself). Stop saying "you can't have that," or, as she would say, stop picking on her. If her food choices cause her blood sugars to increase her doctor will know that with her next a1C test and can adjust her medications and give her eating advice. You don't have to play the bad guy here. Also, lack of exercise is likely to be worse for her diabetes than eating what the ALF serves. Drop the focus on food and see if you can encourage more movement (without playing the bad guy.)
4) It sounds like Mom should have a rollator (walker with a seat) so that when she gets weak on the way to the elevator she can sit for a moment and then go on. And she should not park the walker on the other side of the room if she cannot walk well without it. Take it to the table and let Dad take it out of the way to park it, and bring it to the table when she is done. Does she ever take her blood sugar levels when she has these weak spells, to determine if they are related?
5) At some point Mom may need more services. Many ALFs will provide more services for additional fees. Perhaps she should get her medications delivered every day, for example. Or more frequent housecleaning. This may be a better option than placing her in a memory care unit, for example, as long as it can work.
6) It would be good to be able to distinguish between deliberate mind games and the effects of dementia. If dementia is causing her to repeat herself (very common) you want to be patient with her. If she is playing games it would be good to call her on it and try to put a stop to it. Alas, I don't know a sure-fire way to tell! I guess I'd err on the side of patience.
In general, accept your own lack of control over the situation. Stop playing the bad guy and try to enhance your relationship with your very imperfect parents. They won't be with you forever, and in the long run it will probably matter more whether you and mother were friends than if you can stop her from eating a cookie.
Just my opinions, of course.
And you are so right, your mom laying around all day (because her back hurts or whatever reason she has) will get her in the end. She will lose strength by the day and quickly become unable to move at all. The worst thing an elderly person can do is lay in bed or sit in a chair all day. Not that they should participate in vigorous exercise but the body was made to move and when it doesn't it won't work.
After my mom had been diagnosed with cancer and after the Dr.'s had gotten it all the enormity of what she had been through hit her and she took to her bed and never got up. She was depressed and refused to get out of bed. She'd get out once a day to use the bathroom and that's when I would call her and BEG her to stay up, I yelled at her, I threatened her but as you know we can't make an adult do something they don't want to do. She laid there until she died. When people would ask what she died from I would say 'cancer' but she died from depression. If I hadn't seen it happen myself I wouldn't have believed it.
My mother has Type II diabetes, dementia, hypertension, and spinal stenosis. She does have much back discomfort and is bent. The discomfort still allows her to go for walks, drives, and to pull up weeds from the yard for hours. However, the pain is too bad to mop or do any housework except laundry. The diabetes and dementia are my biggest concern. She has 3 medication times a day -- easy to do, but I have to be there so she gets them. With the dementia, she can't remember if she took her medicine and will take it again if someone is not managing it.
I don't know how much is manipulation and how much is confusion. I think it starts out as manipulation (or excuse making), then gets confused along the way. I don't fault her for asking the same thing repeatedly. This is common. I try not to be too strict with my mother when she does this. She will remember a hurtful remark, though she forgets the casual things she says. My mother remembers some things very well. They are usually the things I would prefer she forget.