Question for the group

Ricsgirl

For those of you that were still working when your LO was diagnosed, what was the decision point for not letting them stay home alone anymore?  I’m still working full time, 2 days a week from home, and am starting to be worried about what he’s doing when I’m not there.  Nothing bad has happened, but he can get confused easily.  I would appreciate any insight!

aod326

Hi. For me, it was almost exactly a year ago, when DH would get confused as to where I was any time I was out of the house, and would forget to look at the whiteboard I wrote up every day. He could still use his cell phone, and would call me a few times a day at work. I'd drive home after work and find him in the road looking for me, and I realized that behavior would only get worse.

I thought he would hate the idea of having someone come in, that he'd feel like he was being babysat, but I framed it as having someone to talk to during the day. (At that point he was extremely social, so he didn't question the idea.)

As it happened, after the very first week of having home care for him, I had to start working from home, because of COVID. I didn't have anyone else with him then, although it was hard, dealing with interruptions etc. DH's progression, with EO, has been pretty fast, and by August I had to place him in memory care. 

Good luck. 

French

Hi,

Last year, before Covid I was letting him alone at home the whole day and even sometimes a night. I was already stressed.

 In June I had go back to the office. I was very stressed at this idea. I was true. He was no more able to manage his planning. He was going to buy the bread but going there wasn’t  remembering were he was going and was then thinking he had to go to the speech therapist. He was also letting the house doors open on the boulevard. Or was going out without mask, keys... I was called and had to come back.

I was also concerned because he was doing nothing the whole day.

In July I hired someone for two half days per week to have him occupied and go to the office.

In October, the other days began to be a problem too. He was pacing in the house constantly. I couldn’t work efficiently from home. I obtained one day at the daycare from November. When we had an appointment to the daycare after one month to make an assessment, I discovered he really liked to be there (not obvious for me as he is only 51) and a second day was proposed.

Today he has 2 days at the daycare (10 am to 4 pm only). Two half days at home with a paid caregiver. I now have to return to the office and also to teach at university and I have a problem with the late beginning of the daycare, so I have hired a second caregiver from 7:30 to 10 am. It is also a way to begin to have help for the shower and dressing that begin to be very complicated.

I feel like I have an organization of bits of strings and I am not at ease with that. What happens if one of the caregiver can’t come ? The other issue is that I don’t feel at home with all these people coming and my teens also feel invaded. There’s somebody in the kitchen when they come for their breakfast. They are both very shy..

Also The Covid crisis will end (I hope) and I will have to move to international conferences and other meetings in France, Europe or around world. SonI have prepared everything for short stays in a nursing home if necessary.

M1

I am at that same point.  I have been working at home for a year now and it's clear I won't be able to go back, I can't leave her alone, and even if I go to town to the store (we're 13 miles out) I'll get at least one phone call and maybe more, wanting to know where I am, when I'll be home, asking how to do something.  She can still get something to eat like cheese and crackers, but she forgets to eat if not prompted and doesn't know how to use the microwave much any more.  Fortunately I think my work is flexible and I should be able to continue to work from home.  

So I guess I would say that if you're sensing it's a problem, you're almost certainly right.  I'd trust your instincts on this one.  I haven't had to hire anyone yet and am not sure how I could frame it if I did--maybe in the summer it could be "someone to help with the farm chores" but that wouldn't fly in the winter.  

Ed1937

M1 wrote:

So I guess I would say that if you're sensing it's a problem, you're almost certainly right.  

I think that's a very solid assessment. If you're working full time, and can't be with him, going by what you wrote I'd guess it's time to get help from family members, friends, or even a paid caregiver. If he's easily confused, that could cause major problems.

David J

I retired early to take care of  my DW. At the time, we were seeing many doctors for different health issues in addition to dementia. I was taking a lot of time off work and when I was at work DW would call often and interrupt what I was doing. If she didn’t call, I would be worried about her anyway, so it was impacting my work. I would make her a lunch every morning and put it in the fridge, but most times she would forget it was there.  She had stopped driving by then and was stuck in the house all day. She was having delusions and high anxiety, which made her phone calls to me excruciating.  I would go home at the end of the day wanting to relax, and she would be at a much higher level of energy.  For lots of reasons work wasn’t going well anyway, and I could afford to retire so I did.  I was lucky that my employer offered an incentive as well as paying me for unused sick time and vacation.  It was a good decision and allowed a few years of almost normal retirement activities before things got too bad.

Everybody’s situation is different and what we did may not be available to you.  The main point I guess is that you and your LO’s emotional health can benefit from being together, and many of the daily difficulties go away for a while.

amicrazytoo

I suppose I would consider myself a lucky one. My DH stays at home, while I go to work Monday through Friday. I make him breakfast before I leave, he is able to make his own lunch, a ham and swiss sandwich. I make dinner upon my return. His day consists mostly of sitting at the kitchen table with the TV on, not particularly watching it.  Then he either goes outside to smoke or to his bathroom to smoke. We have a couple of security cameras that I can check on periodically. He used to go out to buy his cigarettes about once a week, but for the last two months, he has asked me to take him to the store to buy them. I think he knows he is unable to drive. (Thank Goodness!)  That was my largest worry. He is continent, so that's another plus. I am grateful for how lucky I am, I know others have it much harder. I know the decision is a difficult one. They change so quickly. I was seriously considering an early retirement when he was still trying to drive. Now that's no longer an issue and he seems content. I hope I can make it another year before retiring, I will be 65 in 2022 and the medicare coverage will make a world of difference. Everyone is different, you must make the decision based on your particular situation. I wish you the best.

Crushed

Partial answer.  By June 2012 I realized DW could not be left alone. I was already an Emeritus Professor. She was a wanderer.  I taught my last class in Winterterm 2013 and she came to class every day. I was with her 24/7/365 from Sept 2012 to Sept 2017 when the wandering and psychosis led to memory care. I was, by that time, completely exhausted.

Jeff86

Three years ago, I left the house for an early morning meeting.  I had helped my DW rise, get dressed, and come down to sit in the kitchen and have breakfast.  

After the meeting, I was driving back home when I received a call on my cell.  It was from our village police, and the Sergeant said, “Oh, you haven’t been kidnapped.”

It turned out that my wife either fell asleep and had a dream or had a delusion in which she thought some men had broken into the house and kidnapped me.  She left the house, with the dog in tow, and went to our neighbor’s home and told them I had been kidnapped.

That was the last time I left her alone.  I was working under a three-year employment contract, less than a year in, so I hired an aide to be with my DW full time.  My DW was fearful of being alone, so accepted the aide (who has turned out to be God’s gift).

lqadams

I had to quit when the night time incontinence got bad. He doesnt understand that he cannot get out of bed and head to the livingroom to sit in his recliner. He is soaked with urine. I had to be at work at 6 a.m. so no one here to tell him he needs to change into dry clothes. Before the incontinence,   I had considered getting a camera installed in livingroom and office so I could keep an eye on him from work.  If you have WiFi, that may help you to keep working

Matthew63

Hi There, My DW's neurologist told me at our last visit that she (the Dr) did not feel it was wise for my wife to be home alone anymore. So she made that decision for us.

I had to leave work until I could get caregivers online..

I hope your transition is easier than mine.

French

As above mentioned, I set up different solutions and I am now able to state what works best for us.

In our case, daycare is the best. He likes it, see other people (other participants as well as caregivers), is going out (not spending all the time here)... it’s social life, and it’s what he appreciates. On Tuesday, he is the only man, and the youngest (51) certainly very well appreciated by these women. He has an audience. My partner his somebody who likes joking. On Wednesday, it’s a different group, 4 men and a woman. Two are almost young (between 65 and 70) and one was the pianist of a famous French singer. The other is also doing lot of joke. They discuss a lot. He helps the others who are less healthy and consider he is their because they need him. He has found his place.

It has an other advantage, it prepares to be somewhere else, with others... so it prepares to nursing home.

The only issue is that in France, it begins at 10:00 AM while I leave at 7:30 AM. I now have a caregiver coming at home in this laps of time. It finish at 4:00 PM and I come back at 6:00 but it’s ok till now, he stays alone.the transportation is included and the driver check that he is able to enter.

I wait the end of this pandemic to have more daycare days ( it will also end at 5:00 PM then) because it’s what he prefers. I will then have less caregivers at home. I will have teleworking, but I find it difficult to work at home with the caregiver and him near me.

Sea Field

Some questions to ask:

If there was a fire, would he know how to get out of the building and how to call for help?

If he accidentally locked himself out, would he know what to do?  Especially in inclement weather.

Is he a wanderer?  Might he get lost?

Does he have a phone that he keeps on him and does he know how to use it?

If he fell and hurt himself, would he know how to get help?

I retired early and took care of my DH until he passed.  I thought I would go back to work after his passing, but changed my mind and am now enjoying retirement.

Best of  luck as you weigh your options and figure out what will work best for you and your DH.  

Blessings, 

French

Retiring at 49, with 2 teens at home... not possible. 

Other are also very young, we really need alternative solutions. 

Crushed

French wrote:

Retiring at 49, with 2 teens at home... not possible. 

Other are also very young, we really need alternative solutions. 

Frankly the economic situation of Young Onset Alzheimer's is so bad in the USA that a "medicaid divorce" is often the preferred solution 

  https://www.medicaidplanningassistance.org/medicaid-divorce/

In particular the the states will not permit the parents to pay for college education for the children. It's considered a "gift"  "there is no Medicaid regulation/statute that exempts payments of a child’s college expense from the gift penalties, and no New Jersey case law that interprets those Medicaid rules to exempt payments of college expenses. Therefore, it appears that a Medicaid applicant’s of her minor child’s college expenses would be considered by Medicaid to be uncompensated transfers or gifts, thereby subjecting the applicant to a gift penalty under Medicaid."

  

Valentinegirl60

My DH retired in December 2016 rather abruptly.  I was still employed but shortly after he retired I began noticing his memory was failing.  He would forget to eat and when asked, he said he never thought of eating. We didn't get a diagnosis at that time. I chalked it up to him decompressing after so many years working for the state and having a demanding job in networking.  But as time went on, I began to think and crunch my retirement numbers and decided to take the retirement leap one year after he had retired.  The thoughts that kept playing over and over in my mind prior to retiring was I married him and want to spend as much time with him as possible. Those first 4 months were horrendous to the point I said I would go back to work.  I didn't but insisted we go to his PCP. It was his brother that insisted we see a neurologist so we scheduled an appointment in Sept. 2019 and that's when he was officially diagnosed with EOAD.  It's stressful being the fulltime caregiver and I can't imagine having to work and provide care to a LO with AD. I wish you well in your decision making.

KAM1987

Hi, this is my first time on here and Im feeling a bit overwhelmed.   My DH has EO and is in his late 50’s.  I am 54 and work from home and can’t imagine retiring anytime soon at this age.  My husband denies anything is wrong and fights me (not physically just to be clear) anytime there is a dr appt etc.   I don’t know how to handle work, my DH, and every house issue that comes up.   He not only can’t help but usually ends up making matters worse when he tries.  I feel horrible for him and anyone with this disease ...but I also miss having normal conversations and going on vacation etc. - and then I feel incredibly guilty for feeling that way.

Lynne D

I worked from home earlier in COVID, and left my position when I had to physically be at work. My husband could no longer use the stove or microwave, left water running, and would leav the door open when leaving the house.

amicrazytoo

K AM - Drop the guilt, you don't need it and you didn't earn it. I'm sorry you are in this place, all of us wish for a better place. But this is a good place to be, so much support and information. I think how you feel is quite normal. Please reach out here as often as you need. Believe me, someone has experienced the exact same at one time or another, you are not alone. Spend as much time as you can learning about the disease. Then give it a rest and remember to take care of yourself. Breathe.

Arrowhead

I retired at 64 to take care of my wife. There wasn't anything specific that cause me to make that decision. I just felt that she had reached a point where she needed me at home than I needed to work.