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My mother is 73 she battled with stage III Colon cancer went ninemonths of chemotherapy and after that she began to show signs that she was forgetting things. I finally got her to go back to the doctor and they diagnosed her with dementia stage one. That was almost two years ago. She refuses to except the diagnosis of dementia she says that everything is fine and she doesn't want any help she refuses to take the medication they've given her or anything and I am at a loss I am her only caregiver my sister who is 11 years older than me lives in another state and is not willing to help neither is any family that lives in the state I'm in I'm alone and I feel alone. My mother is very difficult even before the diagnosis of dementia she was difficult. I had to remove her car so she cannot drive. I just I don't know what to do please help

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Livingmom42,
I'm so sorry if I made you feel judged. My intent was to be helpful and informative. I am so very sorry that it didn't come out that way. Please come here to get advice and support. There are other people very much like you who can offer that support. Please accept my apology. I intended no offense to your caregiving.
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The Car -

Sometimes we have to be pretty clever with taking this away because it's a symbol of their freedom. Losing the car is a big loss. There are lots of different ways to go about it so it isn't a big argument or a fight to get the keys.

Just resolve that it's going to happen and it's not negotiable or optional.
I think sometimes they will accept it better if it's just something that has happened not by our doing. They don't want their children deciding this, so it needs to look like something else if that makes sense.


Here are some suggestions:

==Mom, I'm taking the car in for a tune up. Then don't bring it back. The car place isn't ever going to be done fixing it. Parts haven't come in, etc. Take it to a place you can get blue book value for donating it and it will help her at tax time.

==Tell her it's too expensive to fix and you have to sell it.

==Disconnect the battery and tell all the neighbors NOT to reconnect it if she asks. Everybody just needs to tell her the battery is dead.

==The doctor told my mom she couldn't drive. I think we got lucky that day. Hearing it from a man and a doctor went over fine. He signed the form for me to have a handicapped sign, so that when I drove her around, we could park close to the door. She was happy about that.

==Take the car keys out of her house. Make sure to find any spares that may be hidden somewhere. Sometimes we have to be cruel to be kind, so let her think they are lost. You might have to help "look" for them once in a while.

==Also notify the DMV she is unsafe to drive. You can take her in to get a State ID instead of a driver's license. Then she can still have the card in her purse she's used to having, but it's very clearly not for driving.

==Tell her you're disabling the car so the in-home care people won't drive it.

==Say the insurance called and said they cancelled her insurance. You may not have to give any specific reason to her. If she asks, just say that nope, you haven't been able to find anybody who will insure her.

My mom got to where she did not care if she killed anybody out on the road. That was a sign she was long past being safe out there. I needed to do whatever it took to stop that insanity.

She may want to know how she'll get around and buy things. You will need an answer for this, and it should't be call the neighbors. I have a friend with a lady next door with dementia, who lives alone. This woman pesters my friend night and day for everything. My friend is considering moving because of this. I told her to change her phone number and stop answering the door.

I was able to tell my mom that she wouldn't need to be out & about as much because of where we were moving her to. Everything was right there on site for the most part. The pharmacy delivered, the doctor did house calls. I did her grocery shopping and laundry, so it was all taken care of.
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LM42, all very good answers above. The more you try to convince mom she has dementia the more she is going to lash out at you. In spite of any explantion you give her she will not believe you, her brain just is not able to process the information.

You were wise to remove her car. This is a very common battle as they just do not understand why they cannot drive. What many on this site have done is to tell them that the car is in the shop for major repairs and is not usable now, or so and so borrowed it. Then tomorrow the same, and the day after that. Depending on the progression of her dementia she may not remember you told her the same story the last time she asked. We realized, and mom did too, when it was time for her to stop driving. She had gone to a friend's house to visit, and could not find her way home. Eventually, she returned and never wanted to drive again. My mom never really liked driving so for us it was not a battle.
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Lovingmom42- bless your heart. This is hard, hard work. We've all been there.

We ask a lot of questions and use our own experiences to tell the stories of how & why we know what we do. My mom is over 17 years into her dementia journey and has never really been accepting of it. Her cooperation levels don't depend on acceptance. Even if she was accepting at some point early on, it doesn't matter one bit now. She never did the planning or made changes that would have improved her situation at this point, so it's only been uphill for me.

I too had to become guardian & conservator for my mom. What a pain.

One thing I learned with my mom is to NOT plan for today's needs. Plan for TOMORROW'S needs. Yes, get in-home help in for now, but don't delay planning for the next stage and ultimately hospice. There's no class to attend and nobody prepares us for this at any point. It's very difficult.

I strongly suggest you watch the Teepa Snow videos on Youtube. There is one series called Making Visits Valuable and it's in 10 minute chunks. It's about way more than visiting. Teepa is a fantastic dementia educator and where I learned a lot of my coping skills (besides this site). Understanding what is about to happen and what it's going to look like helps take the fear away when it happens.

For example, be prepared to hear that you're an impostor out to kill her. Or that in-home help is stealing her blind, when they aren't. She will stop bathing and changing clothes and could become quite combative over it. She will lose her ability to smell smoke, rotten food, BO, and other odors that indicate danger.

Sudden declines and extra strange behavior might mean she has a UTI that's easily treated with antibiotics. My mom would go wild and be loud, mean, and super paranoid.

Depression is really common with dementia. This is also easily treated. If one med doesn't work, a good geriatric psychologist can try others and know what their side effects are better than a regular GP.

My mom also lived alone in a community surrounded by family close and distant in relation. They were not helping her. I always counsel my friends NOT to count on neighbors. They will have their own health & family problems to take care of and may not be dependably available in the way you will need. They will start to feel put upon even if they don't say anything. Neighbors are the last resort plan.

My mom refused to take her BP pills (5 of them) as prescribed because she could no longer understand why. She couldn't understand the schedule either. She covered up by being really belligerent and refusing to cooperate - there's nothing wrong with me, I don't take pills, you're trying to poison me, etc. It did not improve until mom was in a controlled environment where the nurses handled it all. We started with a daily service that setup her pillbox for her, but she had to take them on time. That did not work at all. She couldn't associate the time of day to the right box, or the day of the week. That ability was gone from her brain. Then she couldn't open the little compartments anymore. She ended up throwing it at the wall and breaking it - very expensive pills everywhere. But she said she had no idea how it got broken.

We bumped her up to a med nurse coming in twice a day to hand her the pills in a cup with water. Cooperation was better but not ideal. Sometimes she would trick the nurse into leaving the cup and she'd promise to take them in a little bit, but then she didn't.

Things kept going downhill and mom was put in the 24/7 skilled nursing unit, so she didn't get to have any say in her medications. Her paranoia skyrocketed though. Everybody who worked there was a homeless person sent in to kill her. They were all fakes & frauds. The geri-psych came in and changed her meds. One person tricked her into taking the pills by calling them vitamins. Clever!

Don't confuse "won't" for "can't". These women are gold medalists at covering up their deficiencies and creating a distraction so nobody is looking at the real problem.

Assisted living units generally won't take dementia patients because the care level is greater or will quickly become greater than what an AL unit can provide. I would look at memory care. As part of enrollment or onboarding, they will do a care assessment to determine where your mom is at. If you can find a place that has all the levels of care in one campus, that is ideal. Less work for you when her care levels increase overnight and she needs to move to a different unit.

Memory care facilities are purpose built for the behaviors and special difficulties that come with dementia. Not every nursing home can handle it.

To pay for it, your mom's money will be used until it's almost gone. Then she will be applied for Medicaid and any other assistance she may qualify for. This can include sales of personal property, like her house and anything of value that wasn't already put in a trust years ago. I'm doing this with my mom. I'm waiting on the court in my state to approve the sale of her house in her home state, to create cash to pay with. Once that's out, Medicaid will take over. This is just the way it is whether you are paying for 24/7 in-home care or a facility.

I can say that it was worth every penny. There is no way I can provide decent care for mom at this point in her life. She is now on hospice, which means no more PT or OT, just pain management & comfort care.

Check in and let us know how it's going!
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Lovingmom42, welcome to the site. jeannegibbs put it so well, take what you find helpful and leave the rest behind. Rarely the tone of an answer may seem harsh or terse. We mean well. You will get and soon give good support and advice here.
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Lovingmom42, all kinds of people in all stages of being caregivers come on this site. We welcome them all. Usually we do not know much about their experience level and store of knowledge to start with. So often we suggest something that may be a revelation to a total newbie but sound insulting to someone who has been doing that very thing for two years! Please realize that while we try to be specific to the question, often our answers have to be somewhat generic. We just don't know you that well yet.

From what you've written, you did learn one new idea so far from this thread -- that getting Mom to accept her diagnosis may not be an important issue. I'd say that is a big win from a single post.

Don't fret that every response isn't equally on-target. Don't take generic advice as a personal insult. We are all, like you, doing our best, and giving of our time in hopes of helping someone else.

This is a place where you come and get information and read about other people stories that have similar experiences. Definitely. That every answer isn't a perfect fit is a small irritant more than compensated for by answers that fit well.
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My mothers doctors are fully aware and the court if you must know is also aware that she lives by herself. Like I said previously it was determine from her last vist to the doctors ( which was this past Wednesday). That home care would be best at this point. My mother has also maintained her weight for the past year and a half so her eating is not an issue, or her bathing. The main problem at this moment is her not taking her medication. And also I'm fully aware that her dementia will get worse I'm preparing for that I just really came on the site to get some support and not to feel like I don't know what I'm doing I've been doing it for the past two years by myself and I thought this would be a place I could come and get information and read about other people stories that have similar experiences but your comments Sunnygurl1 are more like you're judging me and you don't even know me or my situation or mom. Thanks for the support and encouragement.
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Lovingmom42, if your mom is in my mom's generation and if she has had fairly good health up until old age, of course she isn't going to take pills when "there is nothing wrong." This is not necessarily a rejection of her diagnoses. It is just, to her generation, common sense. My mother's blood pressure continued to be high. The doctor, sensibly, wanted to know if she took her pills. Of course she did, she said. We looked at the bottle and realized it should have been empty two months ago but was still half full. Mother was telling her truth -- she was taking her medicine. But only when she noticed her ankles swelling. If she was "fine" why would she take a pill? Sigh. We went through several different pill dispensers and had a visiting nurse. Taking pills was a huge struggle the entire time she lived alone. This was never about "I don't believe I have high blood pressure." It was not that she didn't accept the diagnosis. But everyone knows that you don't take pills when you don't have symptoms. Grrrr.

Persons with dementia really cannot safely live alone once they are past the very early stages. Sad, but true. So you need to start figuring out how to address that. Perhaps having in-home care can extend how long she can stay where she is. But in the long run she will need around-the-clock supervision. Count on it. (Unless the cancer ends her life or puts her in long term care before that.)

Don't worry abut whether Mom accepts her diagnosis or not. Who cares? Accept that she does not see a symptom that she needs to take a pill for. DO NOT expect her to be responsible for taking the pills on her own. Work with the doctor to work out the most efficient way to time the drugs (ideally once a day) and have someone there with her to administer them. Yes, the BP pills are the important ones, but with someone else administering them maybe it would be as easy to give several as one.

You mom "can't afford" long term care, but she is going to need it later if not sooner. Might she be eligible for Medicaid? How long could she be self-pay? A partial day in-home aide may be suitable now, but when 24 hours becomes necessary the in-home cost is more than most care centers. Sadly, this needs to be considered ahead of need. Placement as an emergency is tough!
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I guess I'm confused how she has a guardian and yet she lives alone. Often the person is round incompetent by the court, in order to have an appointed guardian and they are not capable of living alone. Regardless, I would determine if she is capable to safely live alone. Her neighbors may be awesome, but as dementia progresses, neighbors get more scarce as the behavior from the dementia progresses. The patient can become annoying, confusing, frightening and embarrassing. Many people don't know how to handle it.

I would have her evaluated to see how much assistance she needs. Are there other things she isn't doing, besides refusing meds, such as eating, bathing, leaving stove on, answering door to strangers, etc. Often when they have no judgment and no short term memory, there are many dangers for them in the home, if they are not supervised at all times.

After you determine what level of care she needs, I would explore the options and whether in-home care or assisted living might be appropriate. You can read a lot about the options and even go and visit places to see what they are actually like, keeping in mind that the dementia will progress and it often results in mobility loss, wheelchair, incontinence, difficulty in eating and swallowing, etc. Of course, she may see more symptoms from her cancer than the dementia, depending on how advanced it is.

I would discuss your concerns with her doctor and see what they think.

Trained professionals have experience in working with administering meds to dementia patients. Since she has dementia, I wouldn't think you are going to be able to convince or rely on her to do it for herself.
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Also I do take her to all her appointments she also has high blood pressure and that has been the main concern of her doctor from her last visit her doctor basically said that they didn't care that she wasn't taken the dementia medicine but it was top priority that she takes the medicine for high blood pressure and I drops for her eyes because she's has glaucoma in both her eyes she refuses everything. Some days she will take the meds but most she says she does not needed them and nothing's wrong. She has had high blood pressure for years and never was take her medicine
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Thank you for your comments I am my mother's guardian and I have conservatorship of her estate I took care of that at the beginning of last year with help from her doctors and the court. . I didn't think about not even talking to her about the diagnosis from now on I won't mention it to her. I don't live with my mother she lives currently by herself I am looking into getting her home health care because she doesn't have enough income to go into assisted living. She wants to drive her car any suggestions on what to say to her when she asked me where is her car do I tell her that cannot drive? She has great neighbors she's lived on the same street for 34 years and all the neighbors look out for her. Never thought about it but I guess I do have help her neighbors the same people that watched me as a child now look out for her. They go a check on her daily, a lot of things I just did not but I'm learning. 😊
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Is there some reason you feel she has to accept the dementia diagnosis? Perhaps, she doesn't want to accept it or she may not be able to accept it. Her brain may not allow her to accept it. Why not spare her that pain? Some people are not told that they have dementia and even those who are told, eventually forget it, so, I wouldn't devote time on pushing the issue with her. Even if she does accept it, she will forget it and you'll have to keep reminding her over and over. I don't see the value in that.

I would try to make sure you or someone has legal authority to act on her behalf. Do you have Durable POA and Healthcare POA? That's important. If she doesn't want to take medications for cancer, then I would honor that. Does she have a Living Will? Perhaps explore meds that will treat her pain and make her comfortable and work with her doctor to get her on to take those.

What is her prognosis with the cancer? I would read a lot of material from the American Cancer Society about dementia patients and cancer. That may offer you some helpful information.
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I would set aside the issue of the diagnosis. You know she has it, she exhibits symptoms, but addressing it as part of her life now is only going to make her resentful and channel that resentment toward you.

Focus on the specific actions and find solutions for them.

1. The family isn't going to help, so don't let them stress you out because they won't. Unfortunately, it's up to you, so you can consider hiring outside help if you need it.

2. Do you have authority as her DPOA? Has she made out a Living Will and complete Estate Plan? If not, when she's in a better mood, start approaching her on that.

3. You might want to consider a caregiver contract, depending on the financial situation of both of you. This will come in very handy if you do accept funds from her and the family challenges you later.

4. I'm assuming she's living with you or you with her, and that you're taking her to appointments?

5. If you are living together, or even if you visit daily, you can gradually take over he medication management, perhaps making it a ritual at mealtime. If you get one of the various medication/pillboxes with 7 boxes divided into 4 periods (breakfast, lunch, dinner and bedtime), you can fill the boxes for the eventuality that she might be willing eventually to take the meds herself. But in the meantime, perhaps you might have to mix the pills with food. Check the labels and printouts that accompany the meds to see the best way to administer them.

She might just be refusing the meds b'c she's resisting you and the dementia diagnosis.

6. What other issues are there? Does she need home nursing care, home cleaning assistance?

7. Try to set up some down time for both of you, time when you both relax and don't discuss anything health related.

8. Try to allow her to be involved in things she can do, so she doesn't feel you're taking over her life.

If she already is difficult, sometimes these suggestion just won't work and you may reach the point of just telling her that you're doing your best to help you, but she needs to meet you half way. When she then insists that she doesn't need any help, start backing off things that aren't as critical as others, such as taking her grocery shopping when you can do that yourself.

It's really hard in this kind of situation, but hopefully others will have more suggestions to offer.
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