Dementia/Memory loss

Dennokee

Hi,
I am new here. I hear because I know my mom has been having some congnitive decline. She has had afib (controlled) for maybe 9 years and sees a cardiologist yearly for a check up. He made an appointment with a doctor to establish her as a new patient and oddly enough she was willing to let me go with her. I wasn’t going to go but something told me to do it. The doc said we are going. To send you to a geriatrician to test for dementia! She immediately said no she did t have that and I agreed because I didn’t want her to feel bad. I managed to signal to the doctor that he was just to talk to me about that and not her. She does have a HIPPA release signed, which is great.
After a while he asked what year it was and it took her maybe 2 minutes to come up with 2026. It broke my heart. Her short term memory is really bad, she confabulates about the past and ask repetitive questions. She is also facing tax lien foreclosure which I am trying to shield her from. I have an attorney but that’s another story. I think when the doctor turned the laptop around and should me that the cardiologist had put “memory change” in his notes it was confirmation.
I have immediately changed my reaction to her, she talks badly about me behind my back to my brother who does nothing but is still the darling boy.
She seems so deflated this weekend but not in a bad way, she was always feisty and actually somewhat mean to me, but I see she is mirroring my mood so I have to be calm and up all of the time. I guess it’s just seeing it in writing is both a relief and sad. This just happened two days ago and I can’t stop crying at random moments. She is 85 and I all I want to make sure of is that she is safe and I worry that she is concerned about what the doctor said but after hours of googling I assume that they don’t really remember. I am just so lost as to where to turn for help. And I have to work and take care of my dog. I live in the same house as her so that’s good but I look at her and feel nothing but sadness. She had a hard life my father was abusive, she left him and raised my brother and I alone which was hard.
I am trying to be calm and light around her keeping my tone level but it’s exhausting. I can’t stop
thinking about it and the path it may follow. The other issue I have is she still wants to drive. Sorry about the long waffle on but I am at a loss. And it’s amazing how many people that you thought were your friends just don’t care.
Anyway glad to be here, thank you and any advice as to how to handle this would be great. Many thanks,
Denno
PS I have only gotten the referral for the geriatric appointment. I need to handle that with care too.

J.A.

My heart feels your sadness for your mother. I don't have any advice bc I'm new here and am trying to get my bro tested. He, too, is mean and nasty…I know its the illness. I try to remain loving and patient, it's challenging. May you find the resources and help you need for your mom.

H1235

Welcome. I’m glad you found us. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. Her brain just can’t see it and usually any effort to explain limitation or symptoms with logic, reasoning or even physical proof will only cause anger and anxiety. We have a saying here never try to reason with a person with dementia. To keep our loved one safe we find work arounds. I know it seem wrong, but sometimes a fib is the least stressful for them. Tell her there has been a recall on the car an it needs to go to the shop, your waiting for parts on back order, this may need to be repeated often. If you think she will refuse to see the specialist to be diagnosed, tell her it’s because of her blood pressure or the insurance is requiring it. Another idea is to avoid topics at all costs that might cause her to become upset. If she gets an idea in her head that makes no sense, but it will cause no harm, just agree with her. Lastly, just do what needs to be done without consulting her or getting her approval. The caregiver is often the one that takes the brunt of the anger. It sucks! Does she have a DPOA? This is incredibly important. If not I would make an appointment with an elder law attorney tomorrow! I would not bring up her symptoms or possible dementia. Suggest that it is something that needs to be addressed now that she is getting older. Do you work from home? In my experience the time from diagnosis to needing 24/7 care is very short. The anosognosia means she may believe she is capable of something she is not that is very dangerous. She may decide to climb a ladder and paint the house, walk 6 blocks to the store and get lost, forget what the fire alarm means, decide to fry bacon and forget about it and catch the house on fire…. I know you are completely overwhelmed right now, but don’t wait too long to decide what her future care will look like. If there is any chance that assisted living might be needed, there can be a waiting list at some places to get in. This is also something to talk with the lawyer about. Medicaid is complicated. Don’t hesitate to throw out specific questions or just rant at the unfairness of it. I will attach a few resources.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

RMremdler

https://alzconnected.org/discussion/77156/dementia-memory-loss

Welcome, I guess. The place none of us want to be. This is a helpful thread of people who are going through similar struggles.
My husband is 67 and I had begged him since the beginning of the year to talk to his PCP about his memory and speech issues. It took me going to the appointment with him but the PCP had already noticed the cognitive decline. Like others have said, our loved ones are in denial. My husband has been diagnosed with mild cognitive impairment and we continue to wait for further tests and appointments to figure out the why and what kind of dementia it is.

As a caregiver, I feel like I have to be more on guard and one of those things is driving. If the car won’t run then that’s a way to keep them off the road. Or if there is a key fob, simply remove the battery. It sucks to have to do this stuff but we are not dealing with rational people anymore with this disease.

Dennokee

https://alzconnected.org/discussion/comment/282734#Comment_282734

Thank you so much. I am in the whirlwind mind stage right now, I am trying to deal with so many things and unfortunately I do not work from home but I do work for the Department of Social Services so that is helpful. She has Medicare with a supplemental MVP insurance. I am curious as to why you feel Medicare is something g I should look into.
It’s so hard to know what to do because an official diagnosis has not been made but I know it is there and clearly the cardiologist saw it as did the GP.
So working at the DSS gives me a little in with the Medicaid stuff if it something I should look into. Again thank you it’s good to have somewhere to go because it feels like a lonely island right now. Appreciate all of your advice very much. 💕

Dennokee

https://alzconnected.org/discussion/comment/282736#Comment_282736

Dennokee

Thank you I am hoping and wishing you well with your journey. 69 is so young. None of us want to be here for sure. It it’s wonderful to have a community to vent with or to say things that we don’t have to keep bothering our friends with. Like I said before caregiving is a lonely island.

Maru

Just a guess, but I think that your mom will eventually be referred to a neurologist. They are the ones that really focus on the brain itself. You ought to go with your mother to every dr. visit because she is not reliable. I got my DH to allow me to go in to the dr with him by telling him I would be the note taker so we wouldn't forget anything the dr said or that we would be sure to ask all the questions that we might have.

I am very sorry that you find yourself here and I live with the hope that my kids won't find themselves in your position.

H1235

https://alzconnected.org/discussion/comment/282749#Comment_282749

The time will come very quickly (for us it was months) when she is not safe to stay at home alone. She may still seem pretty capable, but confusion and anosognosia can put her in serious danger if left alone. As you work to get her diagnosed, you might even ask the doctor if she is safe at home while you are at work. If you work outside the home that means you bring aids in. Aids in the home for 40 + hours a week is going to be very expensive. Then coming home after a long day and spending the rest of your day caring for her is going to be a lot. I found mom liked the independence of assisted living and she loved making friends and socializing. She was still angry with me for putting her there, but she was by far happier than living with my brother who worked all day. Some days she didn’t even get dressed in the morning while living with him. As things progress memory care or a nursing home may be necessary. Regardless of where she is being cared for, the cost of it is outrageous. At 5,000-$15,000 a month depending on the state and the type of facility, her money is going to go quickly. I was able to private pay for assisted living for over a year, but after that her money was gone. Medicaid in my state will only pay for a nursing home. There is a Medicaid waiver, but the Al facilities that accept it 100% were dumps and the other facilities required a huge family copay, some require 2 years of private pay before they will accept Medicaid. What Medicaid will cover (Al, mc, nursing home, in home aids)and how much of it depends on your state. Since there is a look back period (5 years in my state) and lots of hoops to jump through, it’s best to have a rough plan in order as soon as possible. If you are thinking you will have an aid come in while you are at work, I would call around and get some prices. Do the math and see how long that can last with the amount of savings she has. Maybe try the same with assisted living facilities. It can be very difficult, because you obviously have no way of knowing how long she will live(sorry), or what level of care she is going to need for how long. You just have to guess the best you can. Maybe given your work you are aware or other resources that can make her money go a bit farther. I should also point out that some facilities have a waiting list to get in. I hope this helps.

craftygalinstl

Welcome to the club that nobody wants to join. I’m so sorry for you and your mom. This is a roller coaster of emotions.

I’ve read your post a few times a I have a few suggestions. First, and I cannot stress this enough, consult an elder care attorney. If she already has some legal paperwork in place, take it in for review and make sure it will meet hers and your needs now, BEFORE an official Dementia or Alzheimer’s diagnosis is documented. Once you have an official diagnosis, it will be nearly impossible to do anything with paperwork that already exists. Determine your what your brother’s role is, legally. If she’s got his ear and they are talking about you behind your back, he’s probably going to say “She’s fine.” You and your mom live together, so you know otherwise. For that reason, you need to be the POA. Your statement that “he’s the darling boy,” tells me this might be an issue.

Second. I would suggest using some trusted sources of information for research, rather than Google. With Google, you’re going to get targeted ads, and misinformation.
-The Alzheimer’s Association’s main website, (the one that got you here) is very good. They have a lot of printable and downloadable materials and checklists. The user H1235 posted a few useful documents earlier.
Start there and ease into this.
-I would highly recommend a book called Senior Living Made S.I.M.P.L.E. and the workbook of the same name, by Shari Ross. The workbook was more helpful for me, because there were checklists and things I hadn’t considered. The book has a lot of valuable information as well. When you’re doing your research, set a timer for an hour. That helped me from becoming completely overwhelmed.

I hope today goes well for you. Keep in touch.

Dennokee

https://alzconnected.org/discussion/comment/282767#Comment_282767

Hi yes indeed I have to make an appointment with a Geriatrician. Luckily she signed a HIPPA release for the hospital so I can get all the information. I am trying to protect her from the overwhelming thoughts of it. I have also noticed that she seems to have declined in the last week. She is very subdued. But content as far as I can see. So I will and am intending on to handle everything. Thank you for your advice.

Dennokee

https://alzconnected.org/discussion/comment/282780#Comment_282780

I appreciate the input. She is still able to cook for herself and get her self dressed and showered. So she is still okay there. I will check here where I work and ask about Medicaid, I work for the DSS luckily

https://alzconnected.org/discussion/comment/282786#Comment_282786

. Thank you. My brother sadly has no patience with her at all. So it’s all down to me.