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11 years into this.
Crushed
Posted: Monday, February 3, 2020 5:51 PM
Joined: 2/2/2014
Posts: 6144


I thought a time line of the last 11 years might be useful.  for comparison.   All years end in February

Year 1  2009-10

DWs medical notes on herself show concern over memory and spelling.  Makes numerous errors on taxes.  During scuba diving makes some mistakes. Very friendly and likes to be with me.  DW is involuntarily shifted from one senior position to another due to change in statute

Year 2  2010 -11

Diagnosed with Mild Cognitive impairment after failing clock drawing tests.   We go on trips to Rome and Florida and Hawaii. Still scuba diving. Can do medical continuing education

Year 3 2011-2012

Increasing aphasia and reduction in writing ability.  Working only from home and when she can. Can no longer do CMEs

Year 4  2012-2013 

 Turns 60 years old  Stops driving on Drs orders.  Diagnoses of EOAD  Trips to Hawaii, Yellowstone and southwest.  Last day of actually work.  Applies for and receives SSDI. Goes on terminal sick and annual leave.  Can leave her alone occasionally

Year 5  2013- 2014  Travel to Africa and other places.  She is totally dependent on me and cannot be left alone.  Formally retired from Government service.  Last scuba diving.

Year 6 2014-2015   Travel to Africa and other places  Can still take photos. I win pension lawsuit.  Can no longer send an email 

Year 7 2015-2016   Travel to Africa and Alaska.   Has trouble writing her name.  last swimming and snorkeling.  Begin renovations on the house.  Occasional bizarre behavior.

Year 8  2016-2017   Last trips to Alaska and Africa and Hawaii.   begins incontinence and loses sentence structure. Begins wandering.  Finish renovations. 

Year 9   2017-2018   Last trip.  Banff Canada with all family.   Starts psychotic behavior.  Aggressive wandering.  Can understand her condition and care Some care in home.  Placed in Memory care. Very few words.  Can do a few activities in MC.  

Year 10  2018-2019  In Memory care Placed on hospice but improves with aggressive feeding.  Loses ability to do any MC activities.  No longer recognizes me or children.  loses any meaningful words  except "sure".  Overwhelming evidence that out relationship is over.  

Year 11  2019- 2020  Has to be continuously hand fed.  Can still walk.  Speech is gibberish.  Starts to fall and finally breaks wrist.  

 


 


Joe C.
Posted: Monday, February 3, 2020 6:18 PM
Joined: 10/13/2019
Posts: 505


Crushed, Heartbreaking timeline! We have also traveled a good deal since first signs of onset. Next months we are going to Turks & Caicos with daughter and family, this is the first trip I felt I could not handle alone. Probably a couple of years behind you in this journey and the future scares the hell out of me.
anneleigh
Posted: Monday, February 3, 2020 6:26 PM
Joined: 1/24/2019
Posts: 273


Thank you for sharing the timeline.  So glad you got to travel several nice trips.  I am at the point of Staycations in Florida and possibly a trip to MS to see future grandchild #3  in June.  I have had the realization I need to enjoy time with DH now as I know it is going to get worse.

Praying for you Crushed!


LadyTexan
Posted: Monday, February 3, 2020 7:51 PM
Joined: 12/21/2018
Posts: 758


Dear Crushed. Thank you for sharing the timeline. This disease is so cruel. You are very courageous. If I knew how to give you a medal I would.
Pathfinder52
Posted: Monday, February 3, 2020 8:39 PM
Joined: 7/7/2013
Posts: 439


Crushed made me think about where the last 11 years have taken us. . .my list is not as concise as his (pardon me as I ramble about life with JR, my DH). . .

2010      On a typical Sunday, we’re headed to the mall where JR’s son works and suddenly, JR has a heart attack.  He undergoes open heart surgery (triple bypass) – after such extensive anesthesia, I think I’m seeing Vascular Dementia – I’m not, but we don’t know that yet.  He’s still “working” as a mortgage broker from an at-home office but contracts begin to dwindle after his surgery. He just doesn’t have the concentration he used to have.

2011      I’m working full-time and have great health insurance so I am able to undergo two knee replacements one in late May, one in late November.  This is good for me but hard for JR.  I send myself to a Transitional Care Unit after each surgery for additional physical therapy as I know I’ll recover better without adding burden to his days, worrying about me.  He can manage his own care by himself for those few days. It works out fairly well for both of us.

2012      I’m still working full-time and as I recover from my second knee replacement surgery (six months apart in 2011), we take what will be our last trip to Hawaii (splitting our time between Maui and Kauai). We do a lot of walking (good for my knee) and a lot of sitting, gazing at the ocean. What I notice most about the islands is that JR is lost there. We’ve visited these same spots a dozen times and this time, may as well be our first trip. I’m sad about the memories we no longer share. JR puts together his last mortgage deal – it is mine, on our home – he closes his business knowing he cannot study for and expect to pass the required certification exam that would allow him to continue working. He’s retired.

2013      I’m not working full-time and that’s not good (for retirement savings and so many reasons)! My hours have been cut, so I’m home more and noticing new deficits in JR.  I’m noticing so many changes in him.  His “office” is a mess and he can’t find anything (blaming me, of course). It is good he is no longer conducting business. For the first time, I dig into his business accounts and discover he’s about $15K in debt and does not seem to know it. I get him into neurologic testing and he receives his diagnosis, Mild Cognitive Impairment – Alzheimer’s Type.  His mother died with Alzheimer’s Disease; we both know what’s coming.  He gets angry; I get sad.

2014      Early in the year, I have a piece of sports memorabilia that JR’s owned since childhood appraised – the appraisal is good, an auction sale will provide us enough money to clear JR’s business debt.  Mid-year I find a new job and before I’m back to working full-time, I take JR on what proves to be our last real vacation – an Alaska cruise – something he’s always wanted to do. Sometimes, at this new job, I bring JR to work with me (we collate handouts, punch holes in papers, tidy up the learning-lab I run). I’m around many patients with dementia here, in this new job, and it gives me lots to think about.  I pursue training in Palliative Care.

2015      I’m working around too much dementia care in this job – and resources are limited, so little is changing for the better.  I start looking for a new job.  JR is home alone too much; he agrees to volunteer at the facility where I work. He gets through orientation but after two days of trying to serve as a volunteer he says, “I’m done, it is too depressing here!”  I can only conclude, he’s right.

2016      Mid-year, I finally find another job – a great job, it seems.  But, again, JR is home alone much too much. Until now he’s been driving himself to his country club once or twice each week. At this point, we’re both concerned he’ll get lost when driving; he inexplicably hangs up his car keys in February and never drives again – no further discussion, no argument. I’m stunned.

2017      I begin to look for in-home caregivers but, he’s not interested in strangers coming to the house and, he really doesn’t need “care” as much as companionship.  So, instead I get employ a “housekeeper” who is there to help me – or at least, that’s the ruse.  My stress levels are climbing; I need to pursue better self-care.  He’s becoming depressed; we pursue better living through chemistry.

2018      My (great) job inexplicably disappears as administrative priorities shift and I must (and do) find a new position.  I also secure 10-hours/week of in-home companionship for JR but, ultimately the woman in this role finds it far too stressful (really?).  So, we’re back to JR having too much time alone.  On his birthday we experience an April blizzard and, on that same day he falls and breaks his ankle.  I put off the emergency until the next day (when the snow has abated, and I can drive him to Urgent Care). Thus begins a month of hospitalization, orthopedic surgery and extensive physical therapy in a Transitional Care Unit.  Once JR is home, we get him into adult daycare 2x/week – a God-send for both of us.

2019      It’s time to leave my job for good and address JR’s increasing needs.  His depression has given way to anxiety so, I convince his physician to double the dose of his antidepressant – this works.  The year goes well with support from adult daycare, respite from family for a couple of weekends and friends who help with everything from transportation to shopping. I even write a book on what I’ve learned, Self-Care for Family Caregivers. Then, as the year ends, JR has a stroke.

2020      As the year begins and JR has recovered from his stroke (which included hospitalization on a neurology unit and three weeks of Transitional Care Unit rehabilitation) we find additional adult daycare openings enable him to participate in their program four days each week.  As February begins, we enroll JR in Palliative Care and re-write his POLST to assure comfort care only in an attempt to minimize the response to the next “emergency” by declining hospitalization if possible and engaging hospice whenever he becomes eligible.  He listens to this whole conversation and agrees; I enact my POA role and sign the papers on his behalf.

Thanks for letting me ramble. . .

--p

  


lvcatlvr
Posted: Tuesday, February 4, 2020 1:31 AM
Joined: 5/7/2018
Posts: 437


Wow!! You were so lucky to take all those trips even years after her diagnosis.
Ed1937
Posted: Tuesday, February 4, 2020 4:56 AM
Joined: 4/2/2018
Posts: 3817


Those two timelines were eye opening. It's hard to think people can transition so slowly. Thanks to both of you for the posts.

Note: I have Pathfinder's book, Self-Care for Family Caregivers. I found it to be helpful, and well worth the cost and time to read it. I recently reached out to the family for help, after contemplating that for some time. I think the book was the thing that finally pushed me into acting on it. It is available on Amazon.

 


Laurention
Posted: Tuesday, February 4, 2020 7:58 AM
Joined: 11/4/2014
Posts: 394


Okay.. my turn.

2007..Life is great.  Kids are educated, and on their way.  DW is 51 and I'm 53. ( we started young )   Empty nesters with two incomes.

2008 DW ( Bank manager  ) takes a promotion, transfers downtown (Toronto). For the first time in her career she struggles in her new position.  As a long time banker, DW was the family money manager... One evening that year, after enjoying a wonderful, and expensive meal, our credit card was declined ! Incredibly embarrassing !! ( I found an ATM )... After 34 years of marriage we have our first money fight ..!! 

   Late 2008 and the big American car company I work for puts a package on the table. I take it. Turns out, to be the smartest decision I ever made.

2009. I've taken over banking and money management . The phone company, gas company, and the property tax people are all in arrears . I think I have it covered when the registered letter comes from the CRA (Canadian Revenue Agency )..I spent my first year of retirement  figuring that mess out.

2010 ..DW struggles even more in her new position..She tells me that "co-workers are out to get her".  For the first time ever she mentions her retirement ?? We go to a summer BBQ ..DW drinks Diet Coke, I have a few Beer. With DW driving home I notice her driving is atrocious. She can't keep the car in her own lane, or maintain a proper speed ..A country girl, she's been driving since she was 14 ?? At home, another fight.

January 31 2011.. I pick DW up at the commuter train, she cries all the way home.  The tears dry up (somewhat)..I mix her a strong one.. She turns to me and says "I'm not ever going back there!! )..I will never know what happened at work ??

November 2011 ...After a string of doctors appointments, tests, and more tests, an MRI and finally an appointment with a brilliant Neurologist ( a lady in her 70's ) we get the news.

"All indications point to Younger onset Alzheimers Dementia" .. The Dr suspends her drivers license  "The Dr went on to say  you have 5 good years, go out and have fun " Actually the 5 years was closer to two and a half. However we did have fun .. Jamaica, Las Vegas, Road trips, we did it all ..Yes !!! it was horrible expensive.  I don't regret a penny of it.

March 2014 was the last trip ..EOAD was moving fast ..I can no longer leave her alone.. DW resisted caregivers, but eventually agreed.

2015 and 2016.. EOAD was unrelenting.. The Neuro was shocked at just how fast the early stages were...

February 13 2017 ..12 days after DW's 61'st birthday I placed her in Long Term Care.. The transition was a lot easier than I expected. Oh I had a few of "why am I here" or "I want to go home ".. Remarkably, the decline slowed down . It didn't stop, just slowed ??

2018..DW could still walk, and with a little help eat..She could talk, though nothing coherent  . She started wandering, the facility moved her into a higher security area. The EOAD had definitely slowed down.

mid 2019 and EOAD woke up, and in the space of 6 months the decline was once again on the march..We didn't think she would see Christmas...This horrible disease is so unpredictable .

Tomorrow she will be 64 years old.. DW is in a wheel chair,  pureed food, she can't hold her head up, and has issues swallowing . The Dr tells me "that as long as she's eating and taking fluids it may last a year or more ??

I don't want to frighten you folks in the early stages ..Every AD victim takes a different path. This was just our experience .

Best of luck to all of you 

   Mike 

 

 


Crushed
Posted: Tuesday, February 4, 2020 8:16 AM
Joined: 2/2/2014
Posts: 6144


I am doing my taxes.  Our out of pocket medical expenses for last year are $120,000.  Fortunately her pensions and SS cover 80% and rest comes from her IRA.  I have my own pension and SS. for many folks the financial impact of this disease causes life threatening stress.

 

 

 


Nowhere
Posted: Tuesday, February 4, 2020 9:50 AM
Joined: 10/26/2019
Posts: 248


I have few words and can’t blame aphasia. It’s overwhelming loss. The disease is a wanton killer of hopes, dreams, and lives, destroying minds and breaking hearts. I’m so sorry this AD path exists. If I had a magic wand, I’d wave it. We can’t retreat, or even wave a white flag and surrender. “I’m sorry” doesn’t begin to touch it, but I am....
John1965
Posted: Tuesday, February 4, 2020 7:01 PM
Joined: 8/19/2016
Posts: 408


Thank you for sharing. Your wife and mine share so many similarities, though mine was diagnosed at 50. We just passed the 5 year mark for the MCI diagnosis and in April will mark 5 years since the AD diagnosis. 

Honest questions, if you have the time and/or desire to indulge me: Did your wife's high intelligence mask symptoms? Was she able to answer questions (e.g. Who is the current president?) even though other markers in stage 5 were showing? Could she "fake it" in social settings, yet show great decline at home? Did she show symptoms of depression and/or anxiety that magnified her cognitive decline? 

Thanks.  


ButterflyWings
Posted: Tuesday, February 4, 2020 7:21 PM
Joined: 12/11/2018
Posts: 340


What Nowhere said. All of it.

@John yes, my DH's high intelligence definitely allowed him to compensate and mask symptoms for a long time. But in hindsight, things make sense now that we have the diagnosis.

We are "fortunate" it seems, not to have the more rapid path of EOAD. Just regular AD. Which still sucks. I pray to do my best for him, and that I will survive his disease.

Crushed, I/we could not afford to exist if we had $120k out of pocket expenses, for my LO care in 1 year. I am truly glad you and your DW's careers, planning, etc. generated that nest egg but so very sorry you have to spend it on her in this way. I know that is not what you both envisioned, and I truly wish it was not your reality. Thank you for sharing your timeline. I can't think straight enough these days to be that analytical or organized. Just numb & existing.  Wishing you and yours healing in the midst of this terrible disease. You are a treasure.


Crushed
Posted: Tuesday, February 4, 2020 9:15 PM
Joined: 2/2/2014
Posts: 6144


John1965 wrote:


Honest questions, if you have the time and/or desire to indulge me: Did your wife's high intelligence mask symptoms? Was she able to answer questions (e.g. Who is the current president?) even though other markers in stage 5 were showing? Could she "fake it" in social settings, yet show great decline at home? Did she show symptoms of depression and/or anxiety that magnified her cognitive decline? 

She could hide the very early stages from me,but not the children. In early 2010 she was 57 years old.  To be honest she was very clingy romantic and fun, which was a great relief after the massive job focus.  Our daughters  saw the change and a sort of lack of "focus".  By September 2010 we had the MCI diagnosis.  She could scuba dive but not add 2 digit numbers.She worked diligently on memory enhancing exercises. 
 
DW was always incredibly shy and reserved in non family social settings. She had no small talk.   The family all knew as soon as we did.  She never showed depression or anxiety.  She liked everything she always liked, including me.    We went to comedy clubs right up to placement.  Funny story I've told before.  On our last trip to Kruger in 2016 I was doing all the packing.  Everything was laid out on the bed in piles I explained to her  Suitcase (ordinary stuff)  and Carry on (Absolute vitals e.g. medicine , cameras , computers)   She looked at the piles and spotted the bed clamps in the suitcase pile.  these were the clamps I used to lock the twin beds together to make one big bed.     She carefully picked them up and put them in the carry on pile 
 
 
 
 

Melby
Posted: Wednesday, February 5, 2020 5:47 PM
Joined: 5/22/2015
Posts: 32


Only a year more???  My husband has been unresponsive since 2017 and can open his mouth if food touches his lips.  No other response to any touch and no speech or eye movement.  He is getting excellent care in a dementia only facility where he was admitted in 2016 at the age of 69, but my self-patience is at the bottom of the barrel and the costs like the disease, only get worse.  As we look back, this early onset journey had some symptoms over 16 years ago.  He could last several more years but my challenge is whether I can even without any medical health issues for either of us.
Crushed
Posted: Sunday, February 9, 2020 2:55 PM
Joined: 2/2/2014
Posts: 6144


Melby- this is why I tell people to do whatever it takes to survive.   I'm home sick today, working on income taxes.  Watching a loved one decline with this disease  tears at your heart and your brain and your stomach and soul.  I first kissed DW in this house in 1972 right at the spot where I am sitting now.  She was the girl of my dreams.  She was 20 years old.  She was tiny, 110 pounds.  They weighed her yesterday; 104 pounds. I had a  wonderful adventure filled life with her.  Creative public service work, no fights , Travel, romantic encounters that would probably astonish our children,  and even economic security.  When that goes up in smoke it leaves a scar too deep to heal. 

Try ANYTHING  I approve.


GA-Mom
Posted: Sunday, February 9, 2020 3:30 PM
Joined: 2/17/2017
Posts: 138


Thank you to those who provided timelines. It gives me a glimpse of what the future might be. Wondering when the "other shoe will drop" with this disease is so frustrating. My DH was diagnosed in November 2016 at age 68, but I had noticed things a year or  so before. His mother died of ALD at age 85, very peacefully in her sleep about 5 years after diagnosis. She was never violent or psychotic. His older sister is 80 and we all noticed symptoms 10 years ago. I keep expecting to get a phone call that she has passed, but she still feeds herself when it's placed in front of her, and can walk with help. She has also been very peaceful. 

I don't know how my husband will progress, but I imagine it could be like his mother and sister. I hope he is as peaceful about it all. I honestly don't think he realizes it all. Which means I could easily have 6+ years of this. Right now his ADLs are good, but he couldn't live alone. I do work full time and he is ok at home, but bored, like someone else said. I looked for a 'companion' but it's kind of expensive, usually $20 an hour. 

I tell myself to enjoy each day because it will not get any better. We don't really take trips because funds are limited and DH honestly isn't too interested. If we are frugal, we can afford memory care for him when the time comes. Finances are the other thing that scare the daylights out of me if I dwell on it. 

So glad for this forum so I can share my thoughts. Who knows why this awful disease hits some an not others. My husband's other sister is 92 and sharp as a tack. I pray neither of our daughters get it. My parents were also very sharp, so I hope that counts for something.


Marie58
Posted: Sunday, February 9, 2020 5:37 PM
Joined: 12/31/2018
Posts: 481


Some of you have been on this journey for a long time. I don't know if I can do 11 years!

DH diagnosed in June 2016. Had to retire within 6 months (probably should have been sooner), stopped driving within a year, could barely sign his name within 2 years. We always wanted to go to Hawaii so did that in first year after dx. That was our last big trip. He's late stage 6, needs 24/7 care, he assists me with some ADLs, but not much. Otherwise very healthy. He could live a long time. He wouldn't want to live like this and we're not even 4 years from dx. 

This disease is so heartbreaking at so many levels. 


GA-Mom
Posted: Sunday, February 9, 2020 6:24 PM
Joined: 2/17/2017
Posts: 138


Hello Bill,
I hear your frustration. Come back to this forum anytime to share your feelings. So sorry you are having a tough night. Some of my days are like that. I don't attend a support group but others find it useful. I have family I can talk to who understand what we are going through. 

Yesterday DH seemed almost normal. Today, I have to physically direct him to the cupboard in the kitchen that contains the cat's treats. And then tell him how many to give the cat. 

Hang in there and do good things for yourself. Be with other people. Keep working if you can. I do, and I find it is sort of MY respite. I love my job and it's not too stressful. That helps. And it takes my mind off of being around my DH all the time. I actually look forward to Mondays.


Crushed
Posted: Monday, February 10, 2020 9:43 AM
Joined: 2/2/2014
Posts: 6144


I wrote the timeline for a research project answer.  There were also a few questions so I thought you might be interested in the answers I gave 

 

How did I feel  when I first heard about the diagnosis ?

Devastated, destroyed, Cheated by the universe, and a bit hostile to some people.   I finally went to and continue to go to therapy to deal with these feelings.  However I am not depressed and continue to function well both as caregiver and in my profession when I could. 

How did Alzheimer's alter the family dynamic?

I was always the cook and homemaker for my wife.  What declined was our ability to share in decision making.  She went from being a full partner to being the helpless,  speechless subject of my care and attention.  That Is a horrible thing to watch and endure, especially when it is a spouse.   

How did it ultimately affect your daily lives? 

Think of it as a slow motion divorce without any fault.  Essentially she left me due to the disease.  There was no ceremony or moment when our marriage ended, only a time when I realized it was all over.  We would go on, but in different directions. I would care for her in every possible way, but could not longer pretend she was my partner or the children’s mother or grandmother.

I would only add that compared to most families finances were not a major driver of the family dynamic.  We had both always  worked and retirement pensions and savings were adequate to provide for her while still reserving enough for me if I needed the same very expensive care.  That was a tremendous family relief and allowed us to travel while we still could.  This disease is a financial disaster for most families  particularly when it occurs early,  My wife was 57.