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jlstein

This is my first post here. My mother was diagnosed with mild cognitive impairment most likely due to Alzheimer's about a year ago. She lives alone and I also live alone about half an hour away from her. I have no siblings.

My mother firmly does not believe she has Alzheimer's and she does everything possible to hide it. She wants to stay living alone.

She is scheduled to take a driving test next week that her doctor suggested. She is very much against taking this test because she doesn't want to lose her license.

We were supposed to celebrate her birthday this weekend. I just got off the phone with her and I feel really upset because I don't know if she even wants to see me on her birthday. She was being vague but she kept saying stuff like you should spend time with your friends. And you seem tired you should rest. I can see you later, another week.

I felt so rejected and frankly in shock. I am wondering if anyone else has been through something similar. I don't know if my mother is mad at me because I will not ignore the Alzheimer's and I want her to take the driving test. Or also she is forgetting her social skills and perhaps she just doesn't realize how she comes across.

I just called her back and she says she is not mad at me just worried I am too busy and not getting enough rest. I told her I will feel even worse if my own mother won't see me on her birthday. I am busy but not too busy to see her.

I observed my mother started to exhibit signs of cognitive decline about 20 years ago. And ever since then I feel in some ways I lost my mother. Though not entirely because she is still here but often her personality is different. And I can't lean on her like I could before. Because often she doesn't understand my life. And she gets mad at me sometimes. Like she got mad at me for asking if she had run out of a medicine she takes. And I ask because she has forgotten her medicines in the past so I feel obligated to monitor.

I don't have any specific question. I don't know what I am looking for with this post. Maybe just hoping someone is in a similar situation and can relate to me. My father passed away a few years ago and my kids are young adults busy with their own lives. The Alzheimer's is so new to me. It is so stressful watching my mother morph and change in ways I have never imagined and I don't know how to handle it.

Last week my aunt told me that no one believes my mom has Alzheimer's. It hurt so much. It felt like my family is mad at me because of my mother's diagnosis. I am just trying to do the right thing and not bury my head in the sand. The diagnosis helps me because it validates the observation I have had for decades that something was not right. So it hurts when my mom's sister who is also her best friend isn't in my side anymore.

jen ht

I hear you @jlstein It's so difficult.

Are you already familiar with anosognosia? This 3 minute clip really helped me understand it better.

https://youtu.be/wd-8cm2vBVc?si=DlvZ95x889aDxWsX

Do you already have DPOA? And are you on her records at each of her health care providers? These will be key for you going forward.

Sometimes having something to focus on and to work towards making progress on helps me.

Others will be along to share more. While waiting on replies and answers, often I will use the search function to look up key words to read previous posts about.

If she has not been checked for a UTI, you might ask for a urinalysis. UTIs can manifest in really unusual ways for our elders.

I know the rejection is so hard. I'm sorry that's happening to you right now.

As we say around here, I'm really glad you're here but I wish you didn't have reason to be here. It's good that you found this. Lots of great people and great info here.

Take care,

Jen

SDianeL

welcome. Sorry about your Mom. Your Mom needs 24/7 care. She will never agree to it so you need to take control. It’s not safe for her to live alone or to drive. She is also vulnerable to scams. Do you have DPOA? If not you should speak to an attorney. Your job is to keep her safe not make her happy. She is no longer the Mom you once knew. It’s not her talking, it’s the disease. You can’t reason with someone whose reasoner is broken. Sadly, her sister is in denial which is fairly common with family or friends. Read the book “The 36 Hour Day” which explains the disease and gives tips on caring for someone with dementia. Here’s a tool that will tell you where she is cognitively: https://www.tamcummings.com/tools

jlstein

Thank you for your caring replies and for listening/reading. I do have DPOA and I am involved with her healthcare. I do not know that she needs 24 hour care just yet. Her doctor doesn't seem to think so. But yes I will look at the tool you provided. It is so hard for me to know how to navigate this new world.

H1235

Welcome. I’m glad you have the DPOA. That’s so important. This all sounds very familiar. I started helping mom with bills and medication long before she was diagnosed. I just slowly took over these responsibilities. Eventually I couldn’t even count on her to hand me the bill she had gotten in the mail and had to have everything sent to my house. Anosognosia can be dangerous. Because mom didn’t think there was anything wrong she wanted to paint her two story garage, power wash the swing, mow the lawn…. She was 79 at the time, tired very easily and unsteady on her feet (should have been using a cane). She also has extremely poor judgment. If she decided to mow the lawn in the middle of a very hot day she could very well pass out. She can’t understand how dangerous a ladder is for her. These are the reasons she can’t live alone. She is perfectly capable of making herself a sandwich, personal hygiene and caring for her self in basic ways. I would encourage you to consider what she might try to do. My mom blames me for everything. She even threw out the f bomb (never heard her speak like that before). The person keeping them safe is usually the one that has all the anger and aggression directed their way. Medication has helped a lot. My mom’s friend told me my dad would be disappointed at how I’m treating mom. Can you imagine. What a thing to say. There are so many little things that really show me what is going on with her that others who are not around much (or just not observant) don’t see. The menu at a restaurant is confusing so she always orders whatever I order, there is a boom on her nightstand in her room, you might assume she is still enjoying reading. The bookmark has been in the same place for 6 months. I could go on and on with all these little things others don’t see. I also have a brother with his head planted firmly in the sand. Trust your judgment. You probably have a better understanding of where she is at than the doctors. As far as driving, if she fails the test she is probably still not going to accept that she shouldn’t drive.it my be necessary to disable the car. If she passes the test, keep in mind she is only going to progress. Just because she passed today doesn’t mean she is still going to be fine in 6 months. You will need to keep a very close eye on things. This is all very hard. We learn as we go and bounce back after mistakes (there will be mistakes) the best we can. I found this all very very stressful. I waited too long, but eventually talked with my doctor about medication for my own anxiety. I’m glad you found us.

April23

It’s so hard to see our LO’s start to change before our eyes. It is its own form of grief and you are not alone.

PWD especially in the early stages are very good at hiding their limitations for short periods—a doctor’s appt., a driving test, a social visit, etc. It’s possible she doesn’t want to see you because at some level she knows something is off and she doesn’t want you to see. Or something is in disarray and she doesn’t know how to fix it. I always said my dad knew enough just to be dangerous. She will never acknowledge her own cognitive impairment or limitations and will fight to drive, live alone, take her medications, etc until you are forced to take it over. Reasoning with her is officially over.

She is very vulnerable no matter how with it she currently seems to be. There are probably small things going on that you’re not even aware of yet. How do her bills get paid, who does her taxes, what is her medication regimen, can she keep up with appointments, is it safe for her to handle a checkbook (probably not), will she turn the stove off, is she keeping up with hygiene, does she have stairs or steps to navigate, can she handle herself in a store or will she ask a stranger for “help” in front of the ATM, etc. The list is long and my advice is to be one step ahead of all of it.

This forum is a great resource so visit often for support. You might also want to navigate the website to find an online or in person support group in your area. Hugs to you!

pamu

It's so difficult when you don't feel supported by family members. My mom is now in MC but for a while her siblings used to make remarks about her "just getting old" or that mom always had issues and was difficult. If your mom is anything like mine, she will beg, borrow and steal to stay independent so she may be convincing family that she is fine. You are in a tough spot that a lot of us can relate to because your mom is cognitively in limbo. Keep doing what you're doing….be there for her. I let my mom talk and vent - but I no longer correct her or disagree. I've learned to stay quiet and nod (hard to do) and try to deflect when she gets upset. Sometimes it works, sometimes it doesn't. I had a very good visit with mom last night at MC but prior to that, the previous three visits were awful to the point that I was contemplating lessening my visits as to not upset her. I try not to take it personally and just focus on what I need to do to help. It might be making/getting her a list of items she wants or bringing her a surprise treat. Does your mom see a geriatric psychiatrist? They are able to manage behaviors and symptoms with medication. My mom's PCP and neurologist were not really helpful with managing her symptoms after her tests and diagnosis. If you think she might refuse seeing one or says she doesn't need it maybe her PCP can say she is required by Medicare to do so now that she is a "senior". I was able to fib a little to my mom because I handled her healthcare/bills. I'm sure she's probably angry and disappointed that she will no longer be able to drive, which is understandable. If she blatently refuses to comply you may need to hide her keys/car. Her insurance may not cover her if she's in an accident if she's diagnosed with cognitive impairment. Is the driving test both a written and road? When my mom stopped driving my sister and I kept a weekly schedule for her for us to take her out to shop, get lunch, etc. That lessened the blow a little bit knowing that she had set days for outings and also didn't have to pay for car expenses anymore. If she knows that there's a plan she may be more inclined to agree to it. If you have DPOA and have a handle on her finances, I would start looking for care options (home or facility) now if you haven't already. A lot of MC's have long wait lists. Contact her state's department of aging/dept of health for resources. Unfortunately, it sometimes takes a crisis to happen (illness or fall) to get the wheels in action, that's what happened to my mom. Take care.

lilacgirl

In a lot of ways I do feel like I'm in a similar situation. My mom is still living at home, it seems my brother and I are the only people in the world who see how far along her memory loss issues are, even after reporting them all to her doctor and having him test her. My dad, her husband of 60 years, passed away less than 3 months ago and we have been visiting her quite often (we live far away) to take her to doctor appointments and the grocery store, etc., so we get a front row seat to all of it.

She is angry with us — especially me — for not letting her drive and for "treating her like a baby," ie., she feels like a baby when I drive her to her hair appointment. Her pride is definitely hurt when her friends all can drive to lunch and she has to get a ride — she does not understand at all why she should not drive. AT ALL.

As a result, she is rejecting both of us, cutting us off in phone conversations, discouraging us from visiting her. She also told my brother I am ruining our relationship by not letting her drive. Not only does this hurt, but I really need to regain her trust so we can get her into AL or MC. (The AL we want to move her into has an MC component.) She actually did go look at it with me, and she didn't hate it, so I took that as a Win, but she adamantly refuses to go there yet—I think partly out of pride: "what would her friends think?"

Anyway, I just want to let you know you're not alone at all. This is new territory for me, too, and I keep reminding myself (and her) that I'm trying my very best. But I feel like we are on a runaway train car barreling toward disaster right now.

SDianeL

https://alzconnected.org/discussion/comment/267665#Comment_267665

sadly your Mom will never agree to go there. She doesn’t believe anything is wrong. Her brain is incapable of understanding that. You will have to make the decision for her. She won’t be happy. But she will be safe. Don’t wait to take control.

caregiving daughter

You are doing an incredible job! Please understand that your mother's judgement is impaired and that she may be saying things that aren't credible or kind.

What may help is if you record instances where the cognitive impairment is super present. For example, messed up pill box, got lost in a parking lot, wanted to move all the beds out of guest rooms, etc. Anytime you start doubting yourself, pull the list out and read it. I'm pretty sure it will give you the emotional support you need to get through your next caregiving task.

As far as family members who claim they don't see it, you'll need to develop a thick skin. If they persist, you could ask them to accompany your mom to a doctor's appointment. They'll either see it first hand or they'll decline and you'll realize that you are the one to be counted on.

Please hang in there.

Frustrated Daughter

https://alzconnected.org/discussion/comment/267737#Comment_267737

Thank you for the kind words. This disease has cost me so much, after seven years of hell , she's now talked away in a home being cared for, my sister controls her house and I homeless. I went so bad to just give up.