How can I get my mother to remember that my sister and I are visitng her home, not the other way around?
My sister and I share caregiving responsibilities for our parents, by alternating months staying with them in their home. We're both married and live in other states, and although this has been going on for two years and three months, while typing this just now, it occurred to me, for the first time, how almost unbelievable this is, what we're somehow managing to do!
I'll give you a brief history of what has been going on with Mom and Dad over the past two years.
Mom has what I would call late middle stage Alzheimer's disease, and Dad is legally blind and hard of hearing. Dad is oriented to person, place and time, but I have noticed a decline in his mental ability during the past 6 to 8 months. He is a supposedly 'reformed' alcoholic, and we have had problems with him drinking too much, so we have to be very viligent about his drinking, and he has drank no alcohol in several months, now. His previous doctor said he could have two glasses of wine, per day, but two would become three or four (sneaking it). His doctor retired and his new doctor memorized Dad's history and cut him down to one drink per day, but Dad still drank on the sly. He started having hypertension problems, occasionally, due to the alcohol - plus he would become very obnoxious, actually ordering me to leave (because I would attempt to curtail his drinking), even though he is helpless as a baby. There's no way, under any circumstances, now, that I would buy alcohol for Dad. He actually encouraged Mom to drink with him, which infuriated me, and I guess he picked up on that, even though I tried to be tactful with him!
I liken Dad to a young boy and Mom, to a toddler when I'm pressed for a description of their ability. Neither is incontinent, but Dad has a helpless type personality. Mom has always been extremely active, or 'hyper' (definitely obsessive-compulsive and neurotic and either bipolar and/or ADHD which she's being successfully treated for with psychotropic medication). She now has no idea of what to do to keep busy, which is in conflict with her being hyper, so a big challenge for my sister and me is keeping Mom busy with an activity, when she literally doesn't remember or understand how to do many things! During every waking moment her constant mantra is, "What do I do now?"
During my last visit helping my parents (I've been back home for three weeks) and my sister's current visit, we've run into a problem we haven't yet figured a satisfactory way of handling, with our Mom. My sister and I have spoken over the phone about this, the past two days, and she's quite upset about this and says it's becoming worse and Mom's becomng more upset about it.
Here's a bit more of our history with Mom's Alzheimer's disease so you can see how this has progressed: When I'm at my home and call her on the phone, Mom continually asks me when I'm coming there - literally about every 20 seconds during a conversation, and she does the same with my sister. She has zero short-term memoyy. When I'm there with Mom and Dad, she constantly asks me when I'm leaving (she never wants whichever of us who's there to go, or the other one who's coming to come - until we arrive and she sees us, realizes she knows us and is so happy to see us). Although she doesn't understand our relationship to her, she remembers that we come and go, and she constantly obsesses over this. She calls all three daughters (the youngest daughter works out of town and is home three days over the weekends and visits frequently) her "good friends."
The recent development worrys us because nothing we've tried has helped, Mom is fixated over this and obsesses about it almost to the point of tears:. Not only that, she stays awake for several hours after going to bed, worrying about it. Since Mom is always fixated on our coming and going, and we take care of their house as she and Dad are unable to care for it (that's what I think has caused this), she has decided that her house belongs to me, when I'm there, and to my sister, when she's there, and that she is visiting with us. Since she remembers that we're leaving, she becomes VERY upset because she thinks she's overstayed her welcome and must leave, yet she has no other place to go. She has started obsessing over this almost continuously. This starts her worrying about her Mother who has been dead for 38 years. She says her Mom must be in trouble, or else she would have heard from her, etc. She must start packing and go, but she doesn't know what to take with her, or where to go... She sounds almost panicky when she obsesses over this. She can't even explain this to us, very well, we have just heard bits and pieces of her attempted explanations enough times that we know what she's trying to say.
Prior to the past two months, we had been dealing with her not remembering her Mother is dead, quite effectively, and that has been going on for about a year. But with the new worry - her thinking she's visiting my sister or me, but we're leaving, so she's frantic about WHERE she can go - other than her Mother's house which no longer exists - my sister and I are quite worried. Nothing we've said has helped, and she becomes very, very, very anxious about this.
A while back, my sister visited the Alzheimer's Resource Center, and they told her to agree with everything Mom says, but we can't agree with this, because her wacky thoughts are worrying her, almost to physical exhaustion. My sister says she's much worse than when I was last there (three weeks ago), and is now eating very little, saying she's too worried to eat.
Mom's psychiatrist wants to hospitalize Mom for cognitive testing, perhaps a brains scan, and for her to be under observation for titrating her meds (not related to Mom's worrying or poor appetite, just to exclude a brain tumor and see if we can tweak her meds a bit). Personally, I would like to do this, but it's under discussion with the family, because it will definitely be traumatic for Mom, and when she started the psychotropics, I treaked them myself, by calling the doctors office and reporting her condition, then following the doctor's recommendations. It took months, but we had her on a great regimine, there for a while.
My husband always thinks of things I haven't thought of, to try with Mom, and he suggested I always tell her that I'm not leaving, when she asks. I balked at first, because I don't want to lie to her, but in desperation, I tried it. Mom, being a mentally ill woman with Alzheimer's disease, I realized, early-on, that I would somehow have to gain control of her behavior, or life was going to be hell! The first thing I tried, miraculously, worked! (When she manipulated me and tried to sway me with her strong will, I just pretended to me indifferent. I'd shrug my shoulders and look at her disinterestedly. If she was unreasonable, I'd make comments like, "If you say so," nonchalantly. Pretty soon, she specifically told me I was now the boss, and she relinquished her control to me! She suddenly went from being a very difficult person to a
person who was gentle as a lamb! That is why it is especially important to me to never lie to Mom, because she specifically gave me control and trusts me, implicitly, and I take this responsibility very seriously. This was truly the most amazing and unexpected thing I've ever experienced wih my Mother. When I told her I wasn't leaving, I told her that I'd rather stay with them, but one of these days, I would probably go to check on my husband, but he was a big boy and could take care of himself, so I had no plans to leave anytime soon.I've said things to Mom like "Mom, I know it may SEEM like this is my house because I'm always doing things here like I own the place, but I don't. This is your home. I'm here a lot, doing things for you so you can smell the roses in your older years. If I didn't, I would worry about you working too hard and getting yourself laid up with arthritis. You've always been good to me, and it's time for me to pay you back and be good to you, because I love you." That calms her down for a few seconds, but not for long. This is MY mantra to her, I guess you could say, but it is not working. A few times I've said, "Mom, your home is my home and my home is yours. You are always welcome in my home whether I'm here, or not."
Maybe you can tell me how to discuss this with her effectively. It's very important to us, because Mom is fixated on this and constantly worried about it. Any suggestions to help us?
Typing this out, it occurred to me that the coming and going is changing her routine too much and upsetting her, but the other alternatives for her care aren't acceptible to my parents at the present time. Mom and Dad balk at the idea of having a stranger in the house, and they don't want to leave their home, so this coming and going arrangement is the only current option we have. I hope this note isn't too long, but you said to add details - and I'm a detail-oriented person! lol
My sister suggested I ask you how to handle this problem. It may seem small, but this has had my Mom VERY upset for almost two months - and it's driving my sister and me buggy! She and I have BOTH developed hypertension when we're there, plus a great deal of anxiety, and skin problems, as well!
HELP - and THANK YOU in advance!
WOW! First of all, I want to complement you on the heroic effort you and your family are putting into your parents' care. Please don't be so hard on yourself Debbie but try instead to focus on the monumental task of caring that you have been successfully managing for a very long time. Of greatest importance is the manner that you diffuse Mom's constant worry about whose home she is in and when you & others will be leaving. Hubby's instincts to make-up a story, although counterintuitive to you, are right on target! Your mom does not have the ability to reason through explanations so trying to reason simply will not work but fabricating an answer that makes her content, if even for a moment, is the best approach. It buys time and it takes away the anxiety that she associates with you leaving. I call these therapeutic lies 'FIBLETS'- tiny fibs that turn a negative emotion into a positive one. Your response of "my home is your home" is wonderful and I'm sure it's effective. Her lack of storage space in her brain's memory-center means that most of the information you give her will not be stored and therefore not recalled; combine this with little sense of time (day, season, hour, etc) and it's easier to see why she behaves as she does. You have a daunting caregiver role related to your mom's long history of apparent psych issues and your need to separate these problems from the progression of her dementia...which is which? It is a good idea to have her meds evaluated as efficacy may change with the progression of dementia. I think you will be most successful if you concentrate on the manifestations of Alzheimer's; the use of fiblets can play a truly satisfying part in making your time with mom the very best it can be. Keep focused on the goal of making each moment as pleasant as possible. You will be amazed at how quickly happy moments become days when you learn to diffuse negative situations by simply saying what mom wants to hear. It does take a little practice but I know from your letter that you can do this! I hope you can have a family meeting to discuss other care options for your parents. Someone needs to take control over these heart-wrenching decisions. Do not think about what mom or dad would have wanted when they were both well-functioning, but instead focus on the best care, physical and emotional, for each of them while at the same time saving you and your sisters. Please take care of you.
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