Newly diagnosed parent (75) - recommended first steps?

jessicaj7

Greetings,

My 75 yo mother was just diagnosed with AD. Our next appointment with the cognitive neurologist is not until January. What does everyone recommend I do in the meantime? I have an appointment with a neuro-social worker this week, but I'm not sure what I should be asking them for help with. I would love to get the collective wisdom of this group so I can start moving things along while we wait for the doctor.

She currently lives alone and she is still driving. She no longer works.

Edited to add: my mother was the victim of a major online scam where she lost all of her savings. She is living on just social security. We have a DPOA in place already, thankfully.
Thanks!

M1

Welcome to the forum. Nearly always, first order of business is to get legal and financial affairs sorted while she still sign legal documents. You should consult an elder law attorney about getting durable (not springing) power of attorney for healthcare and finances, so that you can step in to take over bill paying etc. before it becomes an issue. Plan for the future when she can no longer live alone (may be sooner than you think): can she afford assisted living or private pay memory care, or will she need to qualify for Medicaid?

driving is always a hard one, but the sooner you address it the better off you'll be. Certainly something to put on your agenda for the next doctor's appointment. In some states a diagnosis of Alzheimer's is enough to take away a license or invalidate insurance, in others it is not. You might want to ask for a referral for a formal evaluation, as there can be a several month wait for those appointments. A quick rule of thumb: if she could not remember the events of an accident to provide a deposition or testimony, she should not be driving.

sorry you are facing this, this forum is a good place for advice and support.

H1235

Welcome! One of the first things the neurologist suggested we do was to see a lawyer and get legal things taken care of. A elder law attorney will tell you what you need. But a durable power of attorney is very important, medical power of attorney, and probably a living will. I would take a really close look at her living situation (get nosy). Does the refrigerator have a bunch of expired food, are there burnt dish towels or pot holders, are there tripping hazards, is she eating proper meals, etc. I would take a good look at the car and maybe follow her somewhere. Does the car have unexplained scratches, how is her driving. Somewhere here I read about insurance not covering if a person has been diagnosed by a doctor with dementia. I don’t know, maybe that person can chime in. I would at least look into it for your state. Do you think she should be driving? You cant wait for her to tell you she needs to stop driving. You may not even get her to agree to stop driving (this can get ugly). Money and finances is another concern. Many here can tell you horror stories of how a LO gave bunches of money away to scammers. Are bills being paid, are there large unexplained cash withdrawals? Once you have DPOA I would make sure you have access to accounts on line so you can either monitor what she is doing or just take care of everything yourself. You also need to consider how long her money will last if she needs AL? If there are particular family heirlooms that she wants to go to a specific family member (and it’s not layer out in the will) this might be the time for her to talk about that (if it’s not too late). If appropriate you might want to discuss what happens next (Assisted living/in home care). There can be a waiting list for AL facilities. Keep in mind she might wish to have in home care, but if she doesn’t have the money to back it up, that’s all it is a wish ( sorry if that’s too blunt). Anosognosia is very common with dementia an is the inability to see their own symptoms and limitations. This can be a more difficult symptom than memory loss. When making decisions I would keep her physical and financial safety as a priority. Doing what she wants to make her happy and avoid conflict can cause some big problems. You are now taking on the parenting role. There is a group here for new members. There is a lot of great information. I think there is also a current thread here with book recommendations. I hope you find something here helpful.

jessicaj7

thank you both for your insight. I edited the post to add that my mother the victim of a major where she lost all of her life savings. She is currently living on just Social Security.
I’m so glad to have found this resource and will be reading up on all of the posts.

SusanB-dil

Hi Jessicaj - welcome to 'here', but sorry for the reason.

I am one of several in the forum who is extremely and highly wary of a PWD driving. In a lot of cases, should something happen, insurance may not pay and the person and/or (in some cases) the DPOA holder could be sued. Not to mention you don't want them hurting themselves or another innocent party, or even someone just walking on the side of the road. You can disable the car and tell them the part is on backorder. It is ideal if you can disappear the vehicle and tell them it is on recall, waiting for a part.

We had taken MIL off the road after she admitted she got lost. This was in a place she had lived and drove her entire life. A little while afterward, we found out she got lost several times, and then finally admitted she came to an intersection and forgot what to do. Dannnng!! We told our helpful neighbor not to put the wire back on. Another friend of ours took their parent off the road after they had hit a mailbox while driving. We were glad it wasn't a person!

Good you have the paperwork in place. MIL was a victim of fraud - from an evil family member! Three years, 6-figures later, and we are still dealing with the repercussions of that one. So you have my sympathy on that deal. Some people have no conscience.

Edit to add - since she is living alone, make sure she is eating properly, and that food is not expired.

H1235

https://alzconnected.org/discussion/comment/226850#Comment_226850

With that in mind I would definitely be looking into Medicaid. It’s complicated. I hope you have taken over money and finances given what has happened. Some here have talked about a preset $ credit card. That might be something to consider.

​fesk

I didn't see it mentioned. It may be helpful if you or another family member stayed with her for a week or so to see how she is really managing. You may also want to have her stay with you or another family member for a week to see how she manages when taken out of her usual environment. I think she may do better in her own home. This will probably give you a lot of information to share with the doctors about her current abilities.

MaryEllenDaughter

I met with a local Alzheimer’s Association Support person. She was amazing and helped me understand what resources I needed even things I did not think of. There are grants and things for respite and other expenses you may qualify for.