My Experience Taking Care of My EOAD Husband

Doityourselfer

It's going on Year 6 of taking care of my 62 year old EOAD husband.  He's now early stage 7 -  he can still feed himself (finger foods only) and is still mobile although he walks at a very slow pace or stands in a certain area of our house for periods of time.   Still knows who I am most of the time except when he's in his agitated state.  Still sees people in our house due to damage to his occipital lobe and gets highly agitated (curses, claps his hands loudly).  Although these episodes have decreased, it's still quite disturbing to me.  Still has a pretty good appetite.

Changes from a year ago to the present are:  100% incontinent, doesn't pace, doesn't want to go for a ride, doesn't know how to hold a toothbrush, is losing his grip for holding a cup or a washcloth in the shower, goes to bed right after his early-bird finger-food dinner (which is anywhere from 3:30pm to 4:30 pm), stays in bed longer (up to 15 hours sometimes), doesn't know how to get into his bed.  He doesn't always take a nap due to the amount of sleep he gets but he'll sit on the couch for a couple of hours until it's time to eat.  His physician now comes to our house for his check-ups, and I speak to his neurologist every few months on the phone.  

The worst part of my caregiving has been and is dealing with his agitated states.  This is when I have to have the most patience - the only person I can control is myself.   I'm very grateful that he's slowing down and sleeping more.  When he doesn't want to shower, I'll wait until the next morning and try.  I don't stress when he doesn't want to do something.  I'll wait until he calms down and try again.

I cherish every peaceful moment.  I have a bucket list of things I want to do when my caregiving role has ended.  I just ordered a National Park Service lifetime pass which is available for purchase if you're at least 62 years old.  I'm 62 and have many healthy years ahead of me.  I get fresh air everyday in my own front and backyard working on DIY projects (rebuilding a firepit, installed a small round patio, painting lattice around a deck, gardening and mowing, etc.).  

I tell myself this role is temporary and look forward to a life free of caregiving.  

Beachfan

You are a trooper with a realistic and loving approach to the care of your DH.  I applaud you and hope and pray that you are able to maintain your good health and an optimistic outlook for as long as you have to wait to use your National Park Pass.  Best of luck.

Ed1937

It sounds like you are doing everything right. And the best part is that you have an excellent outlook. You're right. You have quite a few good years left to enjoy the beautiful parks we have available. Wish I could go with you.

LadyTexan

You have a great outlook. You are doing all the right things.

My DH is now 57. I am 56.

I first noticed some dementia symptoms in 2016 when DH was 53.  DH was diagnosed with EOAD in February of 2019. Based on my observations, I estimate DH is now mid to late stage 6 on the FAST scale.

In the last 12 months I have noticed the following changes:

1. DH snaps his fingers ALOT. It reminds me of the clapping that you have described. 
2. DH often eats with his fingers. Meal times are a mess here.
3. DH has become reclusive. He has lost interest in doing pretty much everything. He prefers to stay at home and watch TV almost always. 
   • We were taking daily walks by the river. He no longer wants to do that.
   • I took him to get his 1st Covid Vaccine last week. I held his hand every step of the way.
   • Prior to that, about a month ago, he rode along on a 2 hour trip to see an old friend.
    
4. DH continues to lose his speech and have difficulty with word finding.
5. DH is less stable on his feet. He has significant difficulty determining where his body is and following simple instructions. For example, if I say “give me your hand”. He may stare at me blankly. Or he may say “show me” what to do. Or he may pull his hand away after I reach for his hand.
6. DH is not yet incontinent. He usually knows when he needs to go but does have great difficulty managing the mechanics involved in the bathroom. For example, missing the toilet completely because he is unsure where his body is. Thankfully he is much more receptive to my assistance in the water closet.
7. DH is ready to end the day at 5 pm-ish. I try to keep him up until 7 pm so our body clocks can be closer to the natural sunlight and darkness. Otherwise, DH will wake up around 3 am and be ready to start the day.

I am not sure what I will do when the dementia journey is over for us. I day dream about going to a health spa to rest and rejuvenate and let someone wait on me for a change. 

Battlebuddy

   Thank you so much Doityourselfer and Lady Texan . When I see your names on a post I perk up because I feel like we are on similar sections of the road.  It is very helpful to hear where you are in the journey, and what that journey looks like. 

   My husband was diagnosed at the end of 2016 at 53. He is still continent with occasional accidents but needs so much help with the whole process of toileting.( doesn’t like it and doesn’t want to do it anymore. ) Can get into bed but can’t seem to stretch out or put the blanket over himself. Can eat anything with a fork. So I cut up everything including tacos so he can stab at the pieces. He recently started getting stressed out in the car( the people looking at him and the cars rushing by so fast. ) Asks to go home after a few blocks. I see his world beginning to shrink to the house and yard. Peace is becoming harder to come by. He said to me a few days ago”  I feel nervous” I said what is making you feel nervous?  Him- “ I am”  

   When my caregiver days are over, I would like to do some art work and a series of fun things. My sister died last week suddenly of a massive heart attack. So it’s been grief on top of grief. Just want the simple fun things of life you know?  And my son has met a girl who may be the one. I’m hoping for a wedding in my future and please Lord Jesus some Grandma duty.  

Ed1937

Battlebuddy, I'm sorry for your loss. You didn't need more. You have enough.

Doityourselfer

Thanks Beachfan and Ed.  I hope we all can take it easy someday.

A health spa sounds so nice, Lady Texan!  One of these days ...  

A couple things that make meal times less messy for me are a plastic placemat under my husband's plate and a plastic floor protector beneath his chair and the table. They make it easier to clean his area.

Battlebudy, I'm sorry for your loss.  I absolutely hear you about wanting the simple fun things in life.

Battlebuddy

Doityourselfer

   I was thinking about your post and you had mentioned that your husband got agitated. Did the  doctor prescribe something?  My husband was recently prescribed Ativan twice a day but not sure how to Ativan works.

Crushed

DW was diagnosed  as MCI in 2010 but I think everyone knew it was
early stage/early onset Alzheimer's. 
She was 58  and held the top medical position the federal government in her field
no one wanted to make the call. 
Formal diagnosis in early 2012
same pattern as everyone else up to 2017, when she developed aggressive wandering and psychosis. She was "so far down" that the move to memory care was without incident.  By 2018 she had no knowledge of who I was or the kids or grandchildren. 

Sunday is Mothers Day
The next Sunday we celebrate her 69th birthday 
 The next Sunday is our 46th wedding anniversary
 May is tough

Crushed

Beachfan wrote:

You are a trooper with a realistic and loving approach to the care of your DH.

Purely  for humor and to polish my pedantic professor credentials

A trooper is a Cavalryman (or today a police officer)

A trouper  is

2: a person who deals with and persists through difficulty or hardship without complaint you're a real trouper to wait so long

Trouper  comes from the use in traveling theatrical companies (Troupe) where actors did whatever was needed to make sure the show went on.  It is a very complimentary term.

  You are all troupers

Doityourselfer

Battlebuddy,  

My husband is currently taking 300 mg Seroquel (100 mg tablets 3x a day).   It's really helpful in sedating him.  He also takes 25 mg Sertraline (Zoloft) in the morning, 50 mg Trazodone before bedtime, as well as 10 mg melatonin.   I have to place his pills in his mouth.

Crushed

Doityourselfer wrote:

Battlebuddy,  

My husband is currently taking 300 mg Seroquel (100 mg tablets 3x a day).   It's really helpful in sedating him.  He also takes 25 mg Sertraline (Zoloft) in the morning, 50 mg Trazodone before bedtime, as well as 10 mg melatonin.   I have to place his pills in his mouth.

Is the same Doctor prescribing and monitoring all three psychoactive drugs ?

Trazodone and Sertaline known special risk when used by the same patient.  

Using traZODone together with sertraline can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should seek immediate medical attention if you experience these symptoms while taking the medications. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications.   My emphasis

  https://www.drugs.com/drug-interactions/trazodone-with-zoloft-2228-0-2057-1348.html

Doityourselfer

Yes, the same doctor is prescribing and monitoring these meds.  My husband has had no complications.  He had hallucinations before taking any med and still has the hallucinations but less frequently.  Other than having EOAD  he is healthy.

Joe C.

Everything in this post rings so true to me. DW has never officially been given the diagnosis of Early Onset but I noticed changes when she was 62 and first told her PCP about my concerns when she was 63. DW was vehemently opposed to seeing a neurologist and it took another 6 years to get a AD diagnosis.

DW now needs help with all ADLs. On the bright side she is still still mobile, not incontinent and can eat with a fork as long as the food is cut up. On the down side she no longer understands our relationship and at times does not recognize me. She is on seroquil to deal with her delusions and help with her agitation. For the past year I could always take her for a ride which would calm her agitation. Now, as Battlebuddy described, she is becoming frightened in the car. I believe she has lost her depth perception and thinks we are going to hit parked cars of other object on the passenger side of the car.

Like others I dream of a time I am no longer a caregiver. On the other hand I feel I am quickly reaching the end of my rope as a 24/7 caregiver and the thought of placement is something I dread.

Beachfan

Crushed wrote:

Beachfan wrote:

You are a trooper with a realistic and loving approach to the care of your DH.

Purely  for humor and to polish my pedantic professor credentials

A trooper is a Cavalryman (or today a police officer)

A trouper  is

2: a person who deals with and persists through difficulty or hardship without complaint you're a real trouper to wait so long

Trouper  comes from the use in traveling theatrical companies (Troupe) where actors did whatever was needed to make sure the show went on.  It is a very complimentary term.

  You are all troupers

Thanks, Crushed.  I always bomb the "homophone" category on Jeopardy.  BTW, might you be my 10th Grade English teacher, Sister Marian Regina, reincarnated.....?  She delighted in catching us off guard in spelling, punctuation, grammar, vocabulary.  I remember her well; just not everything she tried to teach me.  

Crushed

 
  You are all troupers

 

Thanks, Crushed.  I always bomb the "homophone" category on Jeopardy.  BTW, might you be my 10th Grade English teacher, Sister Marian Regina, reincarnated.....?  She delighted in catching us off guard in spelling, punctuation, grammar, vocabulary.  I remember her well; just not everything she tried to teach me.  

I was the worst speller in my class at Catholic  school  I complained to the principal  that spelling bees were designed to throw out the bad spellers instead of having them improve.
So they changed the system system so  they kept score but you stayed in the competition. 
I also had terrible handwriting due to young seizures  So in violation of all Catholic dogma I was allowed to write with a ball point pen.  The Nuns hated me for it.

Given my handwriting and spelling some folks were amazed I passed the bar exam first time out.  
  

Battlebuddy

Joe C, 

   Yes sounds like we are taking the same turn on the road. 

  I never contemplated Memory care until recently. So expensive and just don’t want him to be miserable. But he is miserable here   (at least when he is agitated)  I’m so much the source of all his problems, that he pulled his sister aside on a recent visit and asked if he could move in with her. But after a very low dose of Ativan I am beautiful and he apologizes , and loves me. So thank god for drugs!