I struggle

Mama Cass

My husband has EO.

I struggle with knowing the markers of progression.

When do I take away the car keys?

When do I bring someone in for part time care?

I struggle with wanting to put my energy into him and his care, but needing to work full time.

I struggle with Medical Insurance treating Dementia as something other than a Health Issue.

John_inFlorida

I'm sorry for your struggle. I know what you mean though, always looking at everything new as a possible new sign. My wife's issues started with a stroke that somehow damaged something in her brain that deals with sight. So since the stroke she has not been able to see properly in the upper quadrants. Because of that she hasn't been able to drive since the stroke. In a way I guess that helped, she just accepted that. But I can see that she no longer has the ability to make quick decisions, so driving would definately be out of the question. Also she cant find her way anywhere. I wouldn't want to wait. Has your doctor said anything about driving? So many serious issues could come about if there was an accident. If there's any doubt on your part, its probably time to take the keys. You could ask his doctor and see what he says.

Good luck

Pooh Bear

Mama Cass,

I don't know how to recognize the progression into the different stages, either.  Some folks say stage 6, stage 7 ... I just know my DH is not EO.  

RE: The car keys.  You'll know!  Three years ago we drove home from a trip to visit family, a 1500-mile trip.  Believe me when I said "If we make it home alive, I will NEVER go in a vehicle with him driving again."  I never screamed so loud in my life as the time when he attempted to change lanes on Interstate 5 and rubbed the side of an 18-wheeler.  But there were other signs, too.  Slow response time.  Had to type up a note and paste it to the dashboard to tell him how to put the vehicle in Drive, Reverse, etc.  Best advice I can give you is watch his response time, reaction to other vehicles on the road, not reading road signs, confusion.  After that harrowing trip 3 years ago, his motorhome sat and gathered dust for a year.  Finally sold in in the summer of 2019.  That was the last time he drove anything (to deliver it to buyer and I drove us home in my car).  Little did I know, car insurance rates go up dramatically at age 74.  So, in order to take him OFF of the auto insurance, we had to go to the DMV and surrender his driver's license in exchange for a state-issued authorized "ID Card."  He isn't even aware that he no longer has a driver's license.  I just gave him the ID Card and we put it in his wallet.  Done.

Wish I could be more help.  I'm struggling with it every day just like you.

Joe C.

Mama Cass, Sorry you had to seek out this community but the are lots of great people here that are more than willing to share their experience. The link below is one of the many description of the 7 stages of progression. One thing you should do ASAP is speak with a Certified Elder Law Attorney (CELA) to make sure you have your legal & financial house in order. Delaying seeing a CELA can be a disaster if you wait until the point where your LO can no longer sign legal documents. Also you should look for a caregiver support group in your area, they are a great place to learn of any resources that may be available in your area.

 https://www.verywellhealth.com/alzheimers-symptoms-98576

Paris20

My husband hasn’t driven for two years but he thinks he’s still driving. My daughter hid his keys in a place he won’t find them. I simply volunteer to drive when we leave the house…every time we go out but he has no memory of previous trips.

 I knew it was time to take those keys away when DH went to pick up our order at a nearby restaurant. The restaurant called to say the order had been ready for ten minutes. Then my husband called to say he was lost. We’d been going to this place for 30+ years and he suddenly couldn’t find the strip mall that was five minutes from our house. I talked him through the trip and vowed never to let him drive again.

Crushed

Mama Cass

Welcome nice folks her , lots of support love and help. Where you are today I was eight years ago except that I was working part time.   So fill in your profile especially ages and states aw e sill try our best.  

I just realized that this would be my post 6666
So humor mode on 

 

 

666 Number of the beast
668 Neighbor of the beast
660 Approximate Number of the Beast
DCLXVI Roman Numeral of the Beast
666.0000 Number of the High Precision Beast
0.666 Number of the Millibeast
1/666 Common Denominator of the Beast
666[-/(-1)] Imaginary number of the Beast
1010011010 Binary Number of the Beast
29A Hexidecimal Number of the Beast
-666 Negative Number of the Beast
00666 Zip code of the Beast
Phillips 666 Gasoline of the Beast
Route 666 Way of the Beast
665 Older Brother of the Beast
667 Younger Brother of the Beast
6-6-6 Fertilizer of the Beast
666 All Purpose Cleaner of the Beast

Rescue mom

On the car, I think most people see their loved one (LO) driving unsafe, and know. Mine was a little different. My DH got lost, in a very bad way, in a very familiar, known neighborhood. 

I brought in more help when I simply could not do it “all” anymore. I developed serious health issues; I was the last to know more help at home was needed. I could no more work outside the home, on top of caregiving, than I could fly to the moon right now. 

I suspect you’d like better answers, I wish I had them. Others probably will.

Ed1937

Hi Mama. Welcome to the forum. This is a great place to get help and information, but I'm sorry you need us. 

You will need to take one day at a time, or one hour at a time. Whenever you have a concern that you're not sure how to handle, please start a new thread here, and you will get a lot of hand holding. We can suggest when to take the keys, but we really need to know why you think it might be time. The same goes for any other concerns. The more information you provide, the better feedback you will get.

Joe gave you some excellent advice about seeing a certified elder law attorney. This is something you will want to so sooner rather than later. If you wait too long, you will certainly be sorry. Many attorneys offer the first meeting free of charge, but verify that when you call for an appointment. When you are finished with the first meeting, you will know what they can do for you, and what the cost will be. People sometimes think they cannot afford to see the lawyer, but the truth is that you can't afford not to.

French

Dear mama cass,

Welcome, unfortunately 

Yes, I can imagine how you struggle. I think we all struggle with something, whatever the stage of our spouse, and whatever our age.

My partner is 52 years old, stage 6c. I am just 50 and working full time with two teens at home.

When to stop driving ? If you have a diagnosis, to my mind you should stop him, even if you think his driving is ok. It’s a matter of insurance. In our case I was fed up with searching the car before we had a diagnosis and took the keys with me ( oh sorry they are in my wallet and I am at my office). 

When to hire a caregiver ? To my mind, begin as soon as possible. He will be used and when he will be with the caregiver, you will work without stressing. I began with one afternoon per week 14 months ago. They were going to the park, museum… I now have 17  hours per week, including  help for the shower and dressing 3 mornings per week. It is now necessary. I also introduced the adult daycare 10 months ago.  1 day per week in November 2020, 2 in January 2021 and 3 in June 2021.  I gradually added help because he could less ans less stay alone at home or I was called because he was in the street without his keys. Now I am searching a MC because I feel that I will be soon unable to manage.

In our case, the disease progressed quickly 

2018 April - he stopped working , burn out. He had difficulties with temporal and spatial orientation. Unable to use his computer. And begin to forget what was told to him

2019 May - eoad diagnosis, stage 4 ( my assessment, the neurologist ones was moderate, with a MMSE = 20). Unable to use a phone, to calculate simple additions

2020 stage 5 - MMSE=15 - apraxia began, less and less short term memory, unable to do simple things as set up the table. Must be prompted to shower and dress. 

2021 first semester -MMSE = 12-  stage 6a and 6b : unable to shower or dress alone. 

2021 summer - stage 6c : more and more incidents in the bathroom. And certainly beginning of 6d with fecal incontinence beginning.

So for us, it seems to be 1 year per stage. Stages as they are described in literature are not so neat, for example, my partner is still able to speak correctly (less and less) when others will loose that early. On the contrary, he lost every activities needing to follow a process very early (cooking, setting the table…)

French

Whaou, i had never seen the number of posts before… 6666 it is a lot  ! I don’t remember having posted 300 messages. Time is running quickly

Farm Gal

I slipped the neurologist's nurse a note that said --- "Please tell my husband that he cannot drive anymore. "  Neurologist did that and I now had a reason to take all the keys.  He complained buy I blamed it on the doctor.  

I hired caregivers so I could get errands done and also to get help in the house.  I told him that at my age I needed help in the house and our insurance (LTC) would pay for me to hire women to come in and clean.  At times he thought they were babysitting him but I explained  over and over to him that they are my house cleaners.  Now after 3 years he is used to having others in the house.  

sandwichone123

Mama Cass,

I am with you.

I am assuming you're meaning early onset as dx before age 65, not early stage, although both may apply. My dh and I are both 59 now. I tell people my life is one continuous ethical dilemma. Every decision, even where there's an obvious answer, is fraught. Most don't have clear answers. The best answers were to see a lawyer and get durable POA and healthcare POA. Our attorney wrote them very broadly so I could take over anything without having to have a diagnosis or show lack of fitness.

I have talked to several people about his driving. The Alzheimer's association publishes some guidelines about when to take the license, and state laws vary. I talked to insurance and my dh is still fully covered and there are not laws here regarding removing his license, so I decided the risk/benefit equation is still on the benefit side for now.

My lodestone is that I will keep working. All decisions have that as the priority. I will get help when I can't keep working while providing all care. I will place him when day care and home health aren't adequate to keep me working.

When people talk about "real" or physical illnesses, I remind them that brains are body parts. At a support group recently the leader said to one member, "It must be hard for him to have a terminal illness," and I reminded her that's *in addition* to the terminal illness our spouses all have.

Mama Cass

thank you Joe.

First thing we did after diagnosis was get a legal and a medical power of attorney.

POA filed with our banks, MPOA filed with our healthcare provider.

I am sure there are more places I need to be filing these documents, but gladly have them in place.

Crushed

Mama Cass

What we call heath insurance in the usa is actually medical care insurance

Alzheimer's patients need a lot of non medical  care and no one absolutely no one wants to pay for it
My wife costs   140,000 a year that we pay. That buys top flight care in an expensive area

It would bankrupt most people.   As a result medicaid is your lifeboat.  Its neither easy nor pleasant but it is there .  You need medicaid advice right now 

CStrope

Taking away driving privileges is a  tough one.  For us, it wasn't even that I thought he would get lost, it was I recognized his inability to make a logical decision.  To me, if he can't order something off a menu because decision making is a difficult task, then all the decisions he needs to make when driving would also not go well.

I know that my LO could physically get into the car and drive without getting lost, but when his judgement is not what it needs to be, then I don't want to risk him driving.

Ed1937

CStrope wrote:

Taking away driving privileges is a  tough one.  For us, it wasn't even that I thought he would get lost, it was I recognized his inability to make a logical decision.  To me, if he can't order something off a menu because decision making is a difficult task, then all the decisions he needs to make when driving would also not go well.

I know that my LO could physically get into the car and drive without getting lost, but when his judgement is not what it needs to be, then I don't want to risk him driving.

I think this is an important post to consider, and one that is easily overlooked. Thanks for the post.