68 year old Widower with Early-onset Alzheimer's

John_O

My father is a retired Pediatrician who has been living with early-onset Alzheimer's for the past 7 years.  We lost my mother to heart failure in 2014 and while my father had very early symptoms prior to her death, things began to be more visible in the months and years following her death.  He closed his medical practice two years later while experiencing issues writing in his patients' charts.

My father's condition has appeared to decline at a faster rate over the past two years during the COVID pandemic.  While he still lives alone, he is cared for by a combination of myself (36 years old), my brother (39 years old), and neighbors.  My brother and I are both about an hour away from him so we rely a lot on the goodness of his neighbors.  But we don't see this as a sustainable reality.

At this point it is very difficult for him to get through the day on his own.  In addition to barely being able to put together one sentence, he can no longer:

• Cook on a stove
• Warm up food in a microwave
• Operate the dishwasher
• Clean his home
• Drive
• Manage the elevator alone
• Make his bed
• Operate his smartphone beyond simple calls
• Send text messages
• Recall TV stations
• Use a computer
• Write

However his daily hygiene is still ok and he (for the most part) can put on his own clothes.

We tried to introduce a daily visiting aide to come 5 hours a day, make sure he takes his medications, make him breakfast and lunch, and overall see to him.  My father rejected her almost immediately saying that it was an invasion of his privacy.  We tried to reason with him but he was adamant about not having her.

We feel that we are in a very difficult situation, with a mixed balance of factors.  He's young (68) and would not be "at home" in an assisted living facility.  He wants his privacy at home, but also has very significant needs, included daily safety.  He lives alone without his spouse and his sons are over an hour away.  He is happy where he lives and does not want to move, but he is becoming a burden on his neighbors.

There are days when my brother and I think we just need to make decisions despite what our father says.  But we have found that to be very difficult.  Overall, just unsure and a bit lost right now.  Hoping for any advice or guidance.  Thank you!

terei

I assume you have a DPOA for health + finances + the basic paperwork necessary.  At this point, he really has no choice in what he ‘wants’, it is what is going to keep him safe.

You will have to take control, hopefully prior to a crisis + force an inhome caretaker or placement in an appropriate facility. You should have visited some to see what is available.

I am unsure that he would even be accepted to an AL with his current needs.

It sounds like he may be able to be convinced that there is a problem at his current home + must be at a good AL or MC til the issue at his current home is ‘fixed’ .  I’m sure his current neighbors would like some relief from his needs also.

There are numerous similar circumstances described on this forum, with tactics, if you look for them.    You are just going to have to grit your teeth + do what needs to be done.  If you do not, the decision will be forced on you with a crisis that will come sooner or later.  Good luck.

Lindsay22

Hi John, 

As the previous poster mentioned the first thing you need to have in order are the POAs. If that isn't already done make sure it is taken care of now.  Then I would start looking at AL/MC facilities and get on the waitlist.  I agree that as limited as he already is you may be looking at going straight to MC. It's not safe for him to stay in his home, he would likely not be able to respond appropriately to a fire alarm or call 911.  I know he wants to stay in his home and have privacy but in fact the best thing for him now is a group setting, with 24hour care and a routine he can follow.  My mom was in a senior apartment (not AL) before moving to MC and was struggling to maintain even basic living there.  Once in MC the routine and alleviation of stress about food, cleaning etc. is actually better for her considering her declining condition.  It know it's hard to accept but home is not always best. 

SusanB-dil

Hi JohnO - welcome to here, where we wish we didn't need to be...  

I agree with terei and Lindsay - please don't wait for this to become a crisis! 

MIL doesn't see why she needs anyone, either, but for safety, cannot be left alone.  Prior to her diagnosis and before all of this was as clearly evident, she did leave two pots on the stove and only caught it because of the burnt smell. That was 2 too many, and that was enough!  After we did have someone there, she did have a stroke, and fell. Fortunately, because someone was there, she got to the ER without lying there for hours (or longer).  Also for driving, DH is mechanic and he did 'disable' the car to get her off the road.  I do hope your dad is not driving.  You can see other posts where this can go real bad. real fast.

Since he isn't able to reason any longer, particularly for his safety, you and brother do need to make these decisions for him.  Agree - it is not easy. If he cannot tolerate a caregiver, you just may need to make a care-facility arrangement.  It does sound like you and your brother have insight to the situation, and good for you for watching out for him. (just my thought - just suggestion - do not move him with you as you have your own life to live, and care and supervision is 24/7  To clarify - not to discourage that - but be sure you are prepared if you do)

King Boo

"There are days when my brother and I think we just need to make decisions despite what my father says."

 Yes, you are 100% correct.  Realizing and embracing this will make you better decision makers, where his care needs drive the decision making.  No emotions, not what Dad says (because he is no longer capable of processing, evaluating and sound decision making).

Chasing ages, stages of a patient population at any facility is difficult.  People die, progress at different rates, etc. 

This can be spun in a positive direction.  "You'll be of so much help to these people with your medical background Dad.  I don't know why they are here, mabye they just need to get stronger, healthier, etc. too!"

My LO squawked a bit about all these old people (they all tend to , no matter their age), but we worked it to our advantage.  "You're right Dad, you are so much stronger, healthier, faster, more together etc. "  He basked in this.  And then got busy 'helping' the others with whatever.

A person left alone with the care needs you describe can be tottering on the edge of disaster, from lack of safety awareness if nothing else.

Look at Memory Care facilities, perhaps with affiliated skilled nursing homes near ONE of you.  There is a definite feel of a 'good fit' at least for care levels as you progress through your visits and research.

In our area, there were many CCRC's with good reputations.  Ours had 4 separate levels of what was deemed AL, the highest acuity one was essentially a Memory Care.

Some communities may have comrarderie for your Dad.  There is one community near us that I used to service as a health professional who had fairly well to do clientele on their campus.  Their Memory Care was chock full of former physicians, lawyers, etc.  It's a constantly moving target to chase same level residents, but you may hit ballpark at admission.

Dad is also probably not as high level as you think he is.  It's a pretty common thing for families to find this out upon admission.

Never have "The Conversation" looking for an OK.  The time for that has come and gone.  It is now about choosing good, sustainable care for him which is kind, compassionate and patient (also dementia specific).   It is about managing that transition through validating his feelings while deflecting and diverting.  The best answer is the one that brings the most comfort.

"Dad, your doctor needs to you be here for a short time for testing and to get stronger.  I'll be here with you a lot to keep you company."

My LO squawked bloody murder anytime we put support services in place in the home.   When a disastrous accident happened it resulted in a lot of hospital and rehab time.  By the time he reached his Memory Care, 3 days in he was super happy.  Very predictable schedule (breakfast at 9, lunch at 12, dinner at 4, medication at 3).  Scaled down size of living quarters limited confusion and getting lost in clutter.  It was literally like "Hey, these people are really nice to me, they let me watch TV, I can have chocolate ice cream whenever I want, etc, etc."

His function actually increased relative to how he was at the overwhelming home of 40 years.

Be strong, Be clinical when you are not crying.   This is tough stuff.

mommyandme (m&m)

When my mother was where your dad is, semi-functioning, we had split shift help.  Not sure if your father might be more agreeable to not having someone there for what might seem a long time.  Someone would come in the morning for three hours then again in the evening for three hours. We did three hour blocks because the agency had a three hour minimum.  Morning person would ensure breakfast and am meds were done and leave a lunch in the fridge.  Then mom would be able to carry on during the day on her own.  The afternoon/evening shift would come to make sure meds and dinner were taken care of, help her get ready for bed, then she was again on her own to simply go to bed when she pleased.  Of course there were other things done too, as well as companionship.  Because they were busy doing things, the time went quick.  Not a lot of time to sit around and feel “watched”.  My brother and I did this long distance. Then we went to 4 hour split shifts for a total of 8 hours a day until 24/7 was needed.  

Not sure if that could help. This is a hard road, sorry for the struggles. 

Tfreedz

Welcome John!

Please listen and take the advice the others have listed here. It is so hard to accept that your once capable parent is no longer able to make the best choices for themselves, but that is where you are. As fast as possible search for facilities close to you and your brother. 

My mother was like your Dad, relying on neighbors who were wonderful and she did not believe she needed to leave her home. Well her neighbors did not see that she had developed pneumonia and almost died of sepsis and dehydration. It took hospital intervention before I could get mom out of her home. She lived with me for 5 months before I could get her into a facility. The key was to stop saying there was something wrong with her. I finally had to tell her that the foundation of her home shifted and it was no longer safe to live there. She accepted that answer immediately and I lamented with her about the faulty construction and then we laughed over it. She is happy and peaceful now that she is in ALF knowing that there is staff, activities and meals all available to her. It was tough when she was so against any at home caregivers or going anywhere. I also continue to tell her this new location is just temporary and that seems to help. I did not include her in the search or decision to move because I knew she would be unable to handle it.

Please intervene before the crisis arises.

harshedbuzz

John_O wrote:

There are days when my brother and I think we just need to make decisions despite what our father says.  But we have found that to be very difficult.  

Nailed it. 

It is clearly time for you and your brother to make caregiving decisions and understand that dad's "wants" may not be possible. Need drives caregiving, not wishes or wants. 

Given his complete inability to engage in IADLs (the living skills we acquire as teens/young adults) he is no long safe to be living alone or managing his finances. Based on your description, he's probably somewhere around late stage 5 to stage 5 of 7 in terms of disease progression which would give him the bandwidth of a tween- and you wouldn't leave a 12-year-old to live without someone looking after them.

Stages of Dementia Dr. Tam Cummings

It is not appropriate to be counting on neighbors routinely. And it could be dangerous- a neighbor could feel as though they're being taken advantage of and alert APS regarding your inaction in stepping into manage dad's care. This could result in them stepping in to obtain guardianship in which case they will likely liquidate his assets and place him which ever facility will take him. There have also been cases where a "helpful" neighbor has been helping themselves to money and favors (like co-signed loans). It's best for you and your brother to step in now. 

It is difficult to take over and assume the role of decision-maker for any parent. For one who is on the younger side it must be even worse. But it is necessary. If you have the legal paperwork in place to do so, it's time to make a plan for either care in the home or a LTC of some kind. If you don't emergency guardianship might be the safest option. This site can help you find a lawyer well versed in this area.

National Elder Law Foundation (nelf.org)

HB

John_O

Thank you for the candid experiences and recommendations.  This is certainly a new experience for all of us.  I very much appreciate all of the advice.

JJAz

John,

SAFETY FIRST.  He's not safe at home.  He can't call 911.  He can't use a fire extinguisher.  You never know when his first episode of wandering will be. 

He needs to be in assisted living, preferably one that also has a memory unit where he can move as his needs increase.  Everybody thinks their family memory is not advanced enough or too young to need memory care.  Not true.  If they are not safe at home, they need memory care.  My husband was in a group home with all stages of dementia.  He died at age 71.  My best friend's husband was in memory care starting at age 59.  He died at age 62.

Gig Harbor

First see if you can find out about his finances. Determine how much he can afford to pay for memory care. If you think he will wander away and get lost he will need more than assisted living because they are usually not locked. I suggest looking for a large memory care. There is likely to be a lot more activities and a better chance of having younger residents. He will be angry at you but it can’t be helped. The neighbors will tire of helping him. Unfortunately with dementia the person with the disease can’t call the shots. You wouldn’t let a three year old decide what he wants to do. It will be tough to make the changes but you will be keeping him safe.