My mother, who is 77, has been cognitively deteriorating for the past couple years. Some days she seems pretty sharp while on other days she struggles to complete the simplest task or to come up with a word or a name. My sisters and I have all noticed these struggles so I called my mom’s doctor and told her about my concerns. She gave her a simple test and then referred her to a neuropsychologist. I took her to the appointment and WOW….it was so disheartening to sit there and watch my mom, who was visibly nervous, try to answer questions and keep her answers straight. After the testing the doctor came out and told me she hadn’t scored the test yet but that mom was severely demented and that probably had Alzheimer’s. She said she would forward her findings to mom’s doctor.
So after several weeks, I asked mom about the report and she said, “My Dr. said I was fine….that I might need a little help with my bills but I don’t have Alzheimer’s!” And that was that…
So now a year has passed and my mom, who lives alone, has started to complain that her ex-husband is coming over to use her pool in the middle of the night with “other people”. At first I tried to convince her that this wasn’t rational but that just seems to make it worse. She’s now convinced he is coming into her home at night to watch TV….Last weekend she called the police about “people” in her pool. I told her to call me instead as the police may decide she is delusional and take her out of her home for her own safety. I felt I needed to scare her a little so she didn’t get herself in trouble by telling outsiders about her delusions. (We had some very bad experiences with social workers who helped with my MIL who acted like they were helping us but actually made things a lot worse!) Oddly, the rest of her behavior is almost completely appropriate and normal. She still struggles with words and names but she still seems able to manage her life effectively.
I’ve called her doctor to talk about her healthcare but the doctor will not speak to me. Mom is very resistant for me to go to her doctor with her so I feel like my hands are tied. I think I could get her to sign a general consent form so that I could speak to her doctors in the event of an emergency but she is fiercely protective of her privacy and her independence. I’m sure I’m not the only one who has been in this position…does anyone have any advice on how I should proceed.
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I have workedvwith Alheizmers and Dementia patients for almost 6 years, it sounds to me like your mother may be in the first stages of Alheizmers, but there are some mental issues as well. These two things go hand in hand, I see it everyday! My suggestion would be to ask the doctor to to a brain scan which will show if she indeed has Alheizmers! As far as her privacy, if there is any question of her safty or ability to make proper decisions, look into power of attorney. This can be done with or without her concent. I would try to get her to understand that this is important in the case where she cannot make proper decisions on her own. You can also look into Alheizmers support groups in your area.
Cman... What you described is very typical. If Mom went back to her general physician alone then that is exactly what she remembers. You were given the diagnosis from the Neurologist... yet you believe what Mom said about the follow up doctor's appointment? Now Mom is having delusions. You don't want her to call 911 because they might figure out that she has delusions and pull her out of her home? She is seeing people and believes they are real. She will act on these delusions. She can wander out of the house and get lost. She can hurt herself or other in her fear. DO you want her to stay in her house alone in these circumstances?
No, you are not going to convince her that these delusions are irrational. To her they are just as real as your reality is to you. That is what a delusion is. Beyond that... this disease takes away her judgement, her ability to remember, her ability to accomplish task, and many other things we take for granted. Yes, there will be moments in time that she will seem ok but what you saw at the doctor's office, and the delusions is where Mom is now. Asking a dementia patient if they have dementia is useless. They believe what their mind tells them and they KNOW they are ok.
Yes, you need to intrude upon her privacy and talk to the doctor yourself. It is imperative that you know what the situations is. You need to go to her house and look deep into the cabinets and corners to find out if she is burning pots, hording, or throwing out necessary items. You need to know what she is eating and if she can still feed herself. You need to know if she is aware of whether food is good or spoiled. You need to set off the smoke detector and see what she does. My bet is that she will not know to call 911 and get out of the house. You need to know if she remembers what she ate the last meal. Can still operate the tv effectively? Is her personal hygiene up to par? On the surface it may seem ok... but if you look I bet you will find reasons why it is unsafe for her to be alone.
You are going to have some very hard choices to make. Many elderly are fiercely protective of their privacy and independence. You and I would be as well. But in the case of dementia you have to do what is right and not necessarily what they want you to do. You have a responsibility to keep them safe and well cared for because the demented brain is incapable. Please hang around and read other post. We are all on the same path as you are with your Mom. I have been there done that TWICE! It's not easy but it's necessary
Does she have a will? If not, suggesting she get one could be an option. Call her attorney to set up the appointment and tell him she needs a POA also. He can bring it up in the discussion as a necessary part of estate planning so that someone (you) can handle thing (pay her bills, etc) should something happen to her (sick and not ableto pay something on time,etc). If it is possible in your state (it is here in AL) the POA should also include health care. My attorney just put everything( including the kitchen sink - so to speak) in mama's and that was what she signed - she didn't even bother to read it. Your attorney can direct you on how to go about this. When you get the POA, make an appointment for yourself with her doctor and take it with you. He has to talk with you then.
This is natural.... My FIL has never admitted that he has Alzheimer's and now he is in severe stage.
For early stage, the person usually does not admit it. It is actually unusual for people like Reagan or Charles Heston to admit it in the beginning.
My FIL as a doctor in his home country and a professor in Chicago insisted that he would know if he had Alzheimer's. But when he was in this, he had no way to find out what is real! He admits that he has memory issue. He cannot accept that he has this fatal disease.
So please don't bother to convince her this. She will never know this and it won't matter in the future.
However, since she is in early stage, please make sure she has a will and appoints you or your siblings as POA or trustee depending on how much money she has and how she wants to deal with it. Definitely get the durable POA for finances as well. You will need to help her in the future. For now she may not accept it.
At some point, you have to use all the tricks to take over her finances in case she messes it up or pays too much for unnecessary sales such as vitamin or donations...
Driving is one issue too. One day you will have to remove her car and stop her from driving when she gets lost. She may care about driving or she may deny that she has problems. Everyone is different. We were lucky that my FIL asked for the memory test himself to see if he could drive. The result was Alzheimer's. He didn't renew the license and now he does not drive anymore. (He is in NH and we donated his car in 2007.)
The important thing to do is to get all the documents ready. Get her living will to tell you guys if she wants artificial instrument to last her death and etc.
Soon you will need to hire part-time or full-time caregiver to check on her everyday. She may get lost sometimes. Just keep watching her.
It will be a long haul. My FIL has been sick for 8 years and he gets worse very slowly but he does get worse over the years. Now he is in a NH. Please note that the person with AD (Alzheimer's disease) will be very confused and moody. Sometimes the family may not be able to contain her and may need to place her in a locked unit for memory impaired.
(Note the locked unit is not obvious to them and it is not an issue.)
My FIL had been in his own house for at least 6 years or so. The home care co. convinced him that he needed caregivers so we had home care for 5 years. At first it was part-time, then it became full-time and eventually 24/7. We had to send him the NH when he got other physical conditions. (He is 91.)
In the beginning, you have to make sure she is watched. You need the POA because you will have to take over from her without her permission as she would not know what is the right thing to do anymore. Use persuation and tricks. Never argue in front of her.
I need to also suggest that scaring her may make her feel worse about her confusion. You may need to hire someone to watch out for her. Later on, scaring won't help because she will forget more. At the moment it may help, but what you need is to convince her within her reality. Her reality is not like ours anymore. So you need to try to see things from her eyes and cope with it. It is not easy.
My MIL did this. At first she denied having issues, then she bragged that she took responsibility and went to the doctor about this (in front of another family member that had dementia due to mini strokes). The look on his face was sad and really made me angry at her for hurting him purposefully while putting herself first which is par for course. Anyways, I digress. She seemed fine during the day and then at night she would be delusional (sundowning) and then she would call the police. The police were getting tired of this for true. The last time they came, they reported that she looked abandoned and were reporting this. It forced the family to get 24 hour care otherwise elder care would put have her admitted (they should have done this anyways, but that's another story).
Individuals with AZ are very good at covering up their issues. At some point if you pursue it with them, they become combative and argumentative to keep you from probing and to protect their privacy. Unfortunately this can't continue. The problem is the doctor usually won't talk to you if the parent hasn't signed a medical release. My MIL's Dr. did talk to me once but said that was as much as he could do with his hands tied. The rest of her Drs continue seeing her every week to milk the money; disgusting... I would see if you could contact elder services in your area or an agency that deals with AZ. Is she still driving?
In dealing with bills, MIL hides some of her bills, lets some lapse and the electric company has threatened to shut her power off before. You need to get a handle on this before you have no choices left. I pray for you and your family.
I am on my third and fourth parent or in law.
First, if she can't pass the mini med, she shouldn't be able or allowed to sign forms legally. If questioned in court it won't stand up. Second you need to go to her dr. and request a visit you may need to demand that theysee or talk to you... or you will ...1 file a complaint with med.bd and/ or have your mother committed for testing . Sound horrible.. it is and was when they made us for my father in law who refused to accept.
This is so hard. If it is your parent you do have a say. Trying to deal with the in laws who you are in yourcare for,yet have no control is the worst.
You do need first to go to her home and find the answers to the above question before you go to the dr so you can have information to back up your concerns
you may need to inform and provide the police with your number, historyand picture of your mom. you need to register her in case she does wonder call the alz. network there is so much more you need to do and they have more answers . Don't wait do it now.