My mother was recently diagnosed. Need some advice

Stacel67

Hi There,

My 75 yr old mother was recently diagnosed with Alzheimers. Her dr prescribed Aricept. I noticed improvement with my mother immediately. She seemed more engaged in conversations and more confident about daily activities. She then experienced side effects and decided to stop the medication. 

She is currently living with her elderly partner. When he passes away she will then come live with me. 

I am already feeling so stressed out with her diagnosis and her memory issues. She gets lost driving. She lies to me about benign things. The past 6 months I have noticed a big change in her. She isn't the same person. 

I am feeling overwhelmed at the thought of taking care of her. I want to help her but I have my own stuff going on. I'm disabled and making the transition to going back to work. I worry of not being able to handle taking care of her.

I feel so lost. No one in my family knows about it.

As a daughter, I don't know what I should or shouldn't be doing. 

Looking for any advice or support.

Thank you!

terei

Read as many of the posts here that you can.    You need to. get a grasp of what legal documents you should obtain re your mother, determine whether she should be driving, review her finances to make sure she is handling them appropriately(probably not...try to gain control before there is a big mess that you have to clean up. 

A certified elder care attorney would be best to see.  There are senior services with your city/county + there is a help line here.

You may not be able to care for her yourself, so researching proper facilities in your area will be necessary.   There are self pay facilities as well as possible help from Medicaid if she qualifies for that.    There is lots of information available.   You are probably aware: this is a progressive disease + she will decline...try to formulate a plan for her progression

Stacel67

Excellent advice. I feel better now having some direction.  Thank you so much!!

Rescue mom

When you said nobody else in family knows, does that include your siblings? Or your own children? IME, everybody in family should know. Her behavior, and what  does *not * do will almost certainly raise questions soon, if not now.  You will need support; hopefully they will help. But especially if it’s your siblings, they need to know what’s going on with their parent. And if it’s your spouse, he needs to know what’s going on with you.

You may need to place her in a facility. There are many that are excellent, and residents thrive with the attention, care and socialization. Many many family members and spouses place because one person simply cannot do everything that’s needed,  24/7, 365 days at some point. It almost always takes others, either paid or family. Sounds like sooner rather than later, she will require that kind of help.

You can get a lot of help and information about services and facilities in your area, and the legal arrangements needed,  by calling your local Alzheimer’s Association. It is a great place to start gathering information. They have tons of good info, and will meet or talk you free of charge. But give them a call, they can be a huge help especially getting started.

Cynbar

Welcome to this forum! You are not alone, there are plenty of us here and have a ton of support, experience and advice to give. Any question is a good one, don't hesitate to ask. I agree with the above poster that your family needs to know what is going on, it does sound like your mother is already pretty far into the dementia journey. At this point, you need to come up with a Plan A, B and C. First thing I would do is consult a certified elder law attorney in the state she lives in, and get his advice on legal paperwork that needs to be in place. Second thing I would do is get a handle on her finances --- does she have funds that will pay for care or placement if needed? If not, she will need to get started on a Medicaid application in the state she will be living in. Is she currently safe and well cared for while living with an elderly partner? It's possible some changes may be needed before the partner dies, a person with advancing dementia can be difficult to care for. And lastly, I would start looking into resources in your area, if your plan is to have her with you. Daycare programs or private caregivers can be a big help, especially if you are working. And it's not too early to investigate facilities, from assisted living to memory care to nursing homes, in case her care would be too much for you. You'll also have to find out which ones take Medicaid, if she will need that for funding placement now or very soon. Good luck, this journey can feel overwhelming but we can help you through it.

jfkoc

Yes, get legal, financial and health ducks in a row. There will come a time that it will be deemed that your mother does not have the capacity to draw up the documents.

Aricept....many incur side effects. Sometimes changing the time of taking the drug helps.

Lying? Probably not. She just does not remember.

Overwhelmed? Of course. We understand and can help you with that by sharing support as well a information.

Start learning about Alzheimer's. Understanding what is going on will make you more relaxed and a better care giver. 

My go to book is "I'm Still Here" by Zeisel.

BTW...she needs to stop driving. Getting lost is one problem having an accident can carry  serious libel consequences.

tdnp

Contact the Department of Motor Vehicles in your state.  Some states have a process in place that allows for anyone to submit a form to detail why the person should not be driving.

French

I also tought my partner was lying. I now think he wasn't. Perhaps he didn't remember, or remember partly so that he tried to reconstitute what he did... but wasn't able to propose a coherent version of facts.

Your mother certainly doesn't lie volontarily

harshedbuzz

Early on, there are a number of steps we all need to take.

Be sure the legal paperwork is in order that allows you to discuss medical issues with her doctors as well as the DPOA for financial and medical decisions to be taken on her behalf. If this hasn't been done, a CELA can do this as well as explain Medicaid qualifying as a safety net down the road.

If you can not physically care for her, than you need a Plan B should partner be unable or unwilling to provide care going forward. You should start investigating memory care facilities and SNFs (in case she needs rehab after a qualifying hospitalization) and pick a couple that would work. 

Related to this, what is the nature of the relationship with "elderly partner"? Is this a long term marriage-in-all-but-name" because of financial reasons? Is this a situation where s/he'll be with mom until the end or will they bail when it isn't fun anymore given that they have no obligation to stay? How enmeshed are the finances; do they own property together? Her house? Would this person cause problems spending money your mom will need for care potentially complicating the Medicaid 5-Year-Lookback? Might they claim tenant status if asked to leave?

This is a good read for wrapping your mind around the changes your mom is living with as a PWD.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

If she's getting lost driving, she needs to not drive anymore. With an Alzheimer's diagnosis in her records, her insurance might not cover her in the event of an accident and she could lose assets that will be needed for her care.

The lying isn't really lying. Sometimes it's a situation where a PWD assumes they did something because they were always the one to do that in the past. This typically refers to more routine things like showers, changing clothes or cooking meals. Other times it's confabulation where a person's memory of something is spotty so it gets backfilled with details from other events. There's always a thread of truth to the story, but it can feel like history being rewritten. 

Good luck.
HB

Stacel67

Thank you all for your reply. I really appreciate the information and support!

Im hesitant to share her diagnosis with my family as my mothers' sister took financial advantage of her 10 years ago. My mother then lost the only asset she had.

She currently lives with her 93 yr old boyfriend. Everything, house and vehicles are in his name only. 

His heath is failing, naturally. His family isn't prepared to care for him so he would most likely have to go to a facility.

Communicating with my mother is challenging. She tells me that her dr is lying to me. I have been in touch with her drs office on a few occasions. She accuses the office of lying to me. This behavior is very unlike my mother. She also has told me that she did this and that and then I find out later that she didnt do either. Is she imagining that she performed those tasks? Is that considered a hallucination? Its very worrisome!

I agree about the driving. Its dangerous for her and others. 

My plan moving forward is to contact an Elder Law attorney and get her started on a Medicaid application. My biggest concern is having the money to get her the help she needs now and in the future considering that she has no assets. I want to get everything set up so that when she needs it, it is available.

Question: Does she need to also attend a consultation with an elder law attorney or can I just take care of it myself??