I am just learning my mom may have Alzheimers

nsalvatore

I am a daughter of a 78yr old woman. Around 7yrs ago my mom took a fall and knocked out unconscious. As time went on she had little confusion. In the last several months my siblings and I noticed big differences with her confusion, forgetting things either we tell her or she tells us. She is also a caregiver for my 84yr old father who is legally blind and has issues with his legs. So I know she is also under a lot of stress. I am confused and a little denial and part of accepting that she may have dementia or Alzheimer's. Mom, is a very stubborn independent woman and I know she will not want to get checked just to possibly rule it out. I am also very scared that this is a possibility, as my grandmother has Alzheimer's and her aunts on her side all had dementia. This is very very hard on me and I am very close with her. I want to be strong and at the same time do not know how to do this and know I have the support of my family. How do I prepare for what may come and how do we bring it up to her just to get a test done without her feeling she is being ganged up on?

H1235

Welcome. Most people with dementia have something called anosognosia. This is the inability to recognize their symptoms or limitations. This creates so many problems. People with dementia also lack the ability to reason an think logically. We have a saying her- never try to reason with a person with dementia. Trying to reason with them just causes anger. You will always lose. Here is what I would suggest. Legal matters must be addressed. She should have assigned a durable power of attorney and your dad should have one as well and a medical poa. Telling her this needs to be done because you suspect dementia is not going to work. Suggest they are getting older and this is just one of those things that needs to be done. You might even say you and your husband are taking care of these thing and that’s why you are bringing it up. The DPOA is very important! As far as getting her diagnosed- do you have hipaa rights? (Not a big deal if you have medical poa, but that may take a bit to get done) I know this sounds awful and dishonest, but you should fabricate some kind of explanation to get her to the doctor. Call the doctors office and make an appointment. Tell your mom the dr office called you to set up an appointment to check her (whatever works, blood pressure, diabetes, heart..). They called while she was out and you were with dad or they couldn’t get ahold of her so they called you. Then bring a note to the doctor explaining all your concerns and the ruse you used to get her into the office. I have attempted a staging tool that will help with symptoms you may not have even recognized as being dementia related. If she hasn’t set up a patient portal you could set it up for her and communicate with the doctor that way (this worked well for me). At the appointment sit slightly behind her so you shake your head if she doesn’t give good information. Again make up some kind of excuse to go to the doctors appointment with her if you don’t normally do that. Her pcp will probably just do a basic test, order a blood test and then refer her to a neurologist. It may take months to get her in to the neurologist and an actual diagnosis. Finances and driving are an issue at this stage. It’s hard to know what to do and how much to insert yourself. I would get nosy. If you are staying with dad while she is gone look to see if there are past due notices or any other red flags. Are there burn towels or potholders in the kitchen? Does her car have unexplained scratches? There are horror stories here of loved ones losing their life savings to scammers or giving away large sums of money (this can create problems if Medicaid is eventually necessary). Dementia care is expensive. I know it probably seems premature, but if you think an assisted living facility is the route you will go for care, it might be a good idea to start looking. Some places have a waiting list. This time just before and after diagnosis is so stressful and there is so much to do (but so hard to make it happen). I have attached a few resources that might be helpful.

DBAT 2.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

JulietteBee

I am sorry to know you are faced with such a distressing situation.

However, you asked your question at the right time.

I assume mom has Medicare or an Advantage plan. Medicare is very big on having patients do a once per year wellness exam. For them, the earlier in the year, the better. Tell mom that her insurance requires a wellness visit. YOU should call to make the appointment BEFORE telling mom it is a requirement.

Set up a patient portal with her PCP's office at that time. Ask them, if needs be, to set it up for her, and to send YOU the login details.

Prior to the visit, shoot the doctor a note to tell him that in order to trick mom into coming in, she believes it is for her annual wellness exam. Share with him your observations and concerns via the portal, letting him know you want a mini-cog done, along with any other tests he deems fit.

As stated above, be sure to retain a lawyer to start drafting their end of life paperwork. (Will, Living Will, POA, Healthcare Surrogacy, Trust, Funeral pkg, etc) one of the children should be assigned those roles, primarily the child who lives the closest. That child can be tasked to handle the affairs for both parents, or have one be mom's, and another be dad's.

You all have a long, difficult road ahead, but each step you take NOW to get their affairs in order, will at least make things a tad bit easier.

Once the legalities have been addressed, don't forget to get their finances in order. Go paperless with all bank accounts. That way, whoever is asked to be DPOA can stay abreast of any/all changes. The DPOA also needs to have their phone number listed on any account that requires 2-step verification. There will come a time when your mom will not be able to locate the messages to give the numbers to you when you are trying to log on.

If they have multiple credit cards, close ALL accounts, except for one. All open lines of credit is at major risk of being maxed out by them or others. In addition, you should go online to all 3 credit agencies and freeze their credit. It is easy to do, and just as easy to undo if a need arises wherein an authorized major purchase needs to be made.

Welcome to the start of this hellish journey of parenting your parent. Please know that you are not alone.🫂

nsalvatore

https://alzconnected.org/discussion/comment/260420#Comment_260420

Thank you very much for such useful information. As far as a trustee and will my parents have all that set up already. I highly like the idea with the Dr. and wellness appointment and will pass that information along to my sisters. That may be the only way we can get her in to get tested.

As far as me I am the youngest of my 3 sisters and very close to mom. I was with her last night and it was a good night, she was on her game. But now looking at her it is hard to hold back tears knowing that we are now at the very beginning of this hard journey. And I want to just embrace each moment I have with her while I still have her here mentally and know she has her moments and confusions or memory issues. She also will repeat the same questions which I am learning it is normal right now. I was told by my uncle they had a conversation about their aunts on her side of the family that all had dementia and her mom passed from ALZ. I am wondering if she notices anything and scared which breaks my heart to see her confused and scared.

To know I have a place to go to (here) with others going through this gives me comfort. Mentally I am struggling and working hard knowing I have to accept what is. I think once we get answers from the Dr. I will have to accept it more. I am part in denial and part accepting. And wonder if that is normal at this stage.

JulietteBee

https://alzconnected.org/discussion/comment/260487#Comment_260487

You are most welcome!

I do not believe you have arrived at acceptance. That will take place many years hence. Imo, it is solely denial.

Enjoy every moment of joy and connectedness with your mom as you can. Sadly, my mother-daughter-bff relationship has turned into that of Registered Nurse-assigned patient.💔

nsalvatore

I think you are right…denial. We are very close also and I said to my sisters I have no problem quitting my job and helping her and my dad. He is 84 legally blind and has issues with his legs. She has been is care taker and I know that is a lot of stress on her. Which I am sure doesn't help with her confusion and memory issues. She took a bad fall 7yrs ago, hit her head and had a slight fracture in her skull since then she has been a little different and lately been progressing a little more.

How are you doing being her registered nurse?

JulietteBee

Yes, your mom sounds like she will need additional help with your dad before she progresses much further through her stages.

For the 40 years of nursing experience I have had, my mom proves to be my most difficult patient. I review our interactions pretty much every night before bed & every night I am riddled with guilt.

One of the most vital piece of information I have gained from this site is to D.A.R.E. Do NOT Argue, React, or Engage. Yet, every day I do exactly as I am told not to do.

When Mom acts "unusual" or says something outlandish, I argue, react, and engage.

Lesson failed! I will try again tomorrow.💔