Knowing what you know NOW, what would you have done THEN

Otterly

My DW was diagnosed with MCI early 2021, less than a year ago.  We have met with an Elder Lawyer and are setting up the necessary financial things,I have also read other prep artiles, I have taken over her meds, help her shecule, and am learning how to commnicae with her to not stress her. but I am looking for the out of ordinary things. .  

But for those of you that have loved ones in more advanced stages, I'm wondering if there are things that you wish you had done to make your or your loved ones life easier now or can share things you wish you had done earlier. Perhaps out of the ordinary things like photos or videos, gathered memorable things to save for later etc.  

Bill_2001

I posted this a while back. You may find it helpful, or terrifying.

 New Caregivers – the Journey Ahead

If you are a new caregiver of your dear spouse, and they have dementia, this may be the journey that lies ahead of you.

I have chosen to sit down and carefully craft this post, for the benefit of caregivers that are just beginning this journey. You don’t yet realize the size of the storm that is coming your way, and I want you to be more prepared than I have been. It is game changer.

I have resolved to do everything I possibly can to take care of my dear wife myself. That means that I am trying my best to avoid placing her into a facility for as long as possible, if at all. The choices we have in this country for placement – be broke or go broke – are shameful. Planning on relying on Medicare in retirement? Think again. Dementia creates the need for “custodial care,” which (surprise!) is not covered.

If you are indeed a newer caregiver, by all means call a Certified Elder Law Attorney and get your affairs in order, right now. Do it while your spouse can understand and sign forms. This is the single most important thing you can do. They will gather all the information about your situation and guide you through the process of preparing legal papers. Spend the money. Do it now.

Here are some pain points that I have discovered, and that I want to share with newer caregivers.

1 - Caregiving sneaks up on you. By the time you have joined this board, you are already deep into the quagmire of caregiving. Think back a year or two, and the things you could still do together. Now here you are, reading posts on a message board run by the Alzheimer’s Association. It will only get worse, slowly draining more and more of your time and energy. You will start letting things go that you once enjoyed, one by one. Hobbies, friends, family functions, will be dropped by necessity a little at a time. Until that one day, which I have arrived at, when your life is nothing but caregiving (and in my case, working full time too). Caregiving is a cruel trap with no reward.

2 – Say goodbye to most of your friends and family. No one wants to take care of someone with dementia because there is no reward/fun in it. Remember the fun times you and your dear spouse had with your friends and family? Now, you can’t go out like you used to. Your spouse embarrasses everybody. Someone has to change your spouse’s diaper. Do you really think your friends are going to help you? So, you end up doing what I am doing. You stay home again tonight, and watch your world get smaller and smaller. Your friends and family are tired of hearing about it; you have become insufferable.

3 – Days turn into years. Before you know it, five years of your life have vanished. Your dear spouse does not understand your sacrifice, and they don’t CARE. Too bad for you, as you turn the pages of a calendar, getting older yourself, while your dear spouse slowly disappears into the ether. This was supposed to be the best time of your lives together. This is the time of life you once looked forward to. Dementia came along and destroyed it. If you are early in this journey, you are still in denial. Prepare for losing the best years of your life. This is going to take a very, very long time. This just goes on, day after day after day after day after day after day after day after day after day after day. Every day is the same. Birthdays, holidays, long weekends, and anniversaries become just another day to slog through caregiving.

4 – You are the sole memory retrieval system. Remember all those precious memories that you and your dear spouse spent a lifetime creating? You had better, because they no longer remember them. The places you went together, the things you did, the fun you had. It’s all over, and your dear spouse remembers none of it. You are alone in your memories. In fact, you can just make stuff up now, because it no longer matters. Your spouse does not remember, and no one else cares. Your lifetime with your spouse exists only in your mind. Was any of it real? This is the stuff science-fiction horror movies are made of.

5 – Heartbreak like you have never experienced. Do you remember getting your heart broken in your youth? Some girl (or guy) lost interest in you, said something really mean, or just dumped you for no reason. That is CHILD’S PLAY compared to getting your heart ripped out piece-by-piece over a period of years. Vascular dementia is killing my dear wife, one day at a time, over a period of years. Each day, she grows colder, more distant, more of a stranger, than the day before. She no longer makes me a surprise dinner, brings me flowers, or makes love to me. Brace yourself for sustained emotional pain. If my dear wife did not have dementia, what she is doing would be considered emotional abuse.

6 – Help costs a fortune. If you get to point where you need real, tangible help with your dear spouse, be prepared to pony up thousands of dollars. Sure, you will get many “thoughts and prayers,” and people will visit occasionally. You will get a lot of advice, and tactics for managing your spouse and your own stress levels. But what about REAL HELP? Someone to watch your spouse while you get away for a while? Someone to take your spouse to the bathroom and change their diaper? Someone to cook dinner for both of you? Or someone to babysit your spouse with dementia, while you just get some SLEEP for a change? Prepare to pay. Your friends and family used to enjoy spending time with you as a couple, doing things together, and helping each other out. But your spouse is no longer an enjoyable person. Who wants to deal with nonsense conversations? Who wants to deal with dirty diapers? NO ONE. The reality is that I must spend half my salary on adult day care so that I can continue working. My dear wife’s retired friends and family are too busy traveling and spending time with their grandchildren. Suddenly, no one has time for her since she has dementia. Everyone offers to help, but no one does. PREPARE FOR THAT.

7 – Nights and weekends are the worst. The days you used to look forward to, you now dread. My favorite time of the week now is Monday morning. What does that tell you about my life? As your spouse progresses into dementia, prepare for your nights to be a lonely nightmare. You are sleeping next to a stranger. Your marriage is over. There is no cuddling, no caressing, no lovemaking, no passion. The nights are long, silent, and lonely. And that is on a good night. A bad night comes with combativeness and incontinence. Do you remember when midnight was the magic hour with your dear spouse? Those days are gone for good. Midnight now comes with either complete silence and indifference, or another change of the sheets after she has soiled her diaper yet again. And I have to get up in the morning, take her to daycare, and get to work. NIGHTS ARE HORRIBLE. And weekends just compound this silence and loneliness across two entire days. I look forward to Monday morning when I can drop my dear wife off at daycare and spend the next eight hours pretending that my life is not over.

8 - Vascular Dementia is Fatal. It is slowly killing my dear wife. There is no easy way to say it. And it is slowly killing me too. There is nothing to look forward to. Not today, this evening, this weekend, next month, or next year. Just more of the same. More tired nights. More loneliness. More nasty diapers. More desertion by friends and family. I am putting forth superhero-like powers into caregiving, but I know what the final outcome will be. Death. In the meantime, there are no more vacations, no more outings with friends, no more passion, no more conversations, no more laughter, no more anything. I thank the Lord every day for my job. It is the only thing in my life that still feels normal. My dear wife’s dementia is killing both of us.

Paris20

I would have taken more trips to France. I had a bucket list of the regions in France that I hadn’t seen during the previous twenty visits to that beautiful country.

Cherjer

Good question! We went on trips and there really is nothing more I can say that we should have done. My husband was officially diagnosed in 2015 and now we can no longer travel but did take a trip in Sept. 2021 to a sibling reunion flying from CA to the midwest. There was no question about traveling with our son and his family as much as we could..and now we can't. But no regrets. Do what you can right now...I had care managers and friends whose husbands had AD and said to me not to go on trips. I am so glad I did not listen. If Covid had not occurred in 2020, we would have done so much more...and that added a year on to my DH progression and restricted things we planned on doing. Don't wait...go for what ever you have planned!

Jo C.

All of what you mention is a really great start; you seem to have it all in hand.  I will take this from a practical standpoint:

I would be sure all banking was in order with my name on all accounts.  I would have safe guarded the important papers getting them out of the files in my LOs reach; they were eventually plundered. I also would safeguard family photographs which also got plundered and mailed off to we do not know who and some actually ripped out of albums and discarded.

I would have got a post office box sooner because it became necessary to have some items not come to the house as it would cause all sorts of angst and mischief. I would also have taken the credit cards out of the wallet and definitely would have frozen all accounts at the three Credit Reporting Agencies.  I would have got reports from all three credit agencies in my LOs name and see what was there. I actually found no less than 16 open credit accounts in those reports which I swiftly closed.  I would have cancelled mail order catalogs coming to the house as my LO began to spend willy-nilly and then never use items purchased.  I would have purchased more easily worn clothing and in my LOs case,  I would have bought two of everything as later in the disease process my LO refused to let an item be washed; it MUST be right by the bed at night and worn again the next day - having two identical outfits would have made getting things to the laundry much easier.

AND . . . I would have researched and found a very good dementia specialist far earlier than I did.  My LOs Board Certified Geriatrician was actually a miserable failure and caused preventable issues by incorrect diagnosis for type of dementia which led to prescribing meds that were contraindicated in the actual type of dementia that was present and that made things very dicey for a period of time until I got my LO to an excellent specialist. 

I would have greatly simplified the house getting it prepared for future dynamics; the best thing one can do is to have routine and structure to each day and to unclutter and make the environment simple.    I would have taken more pictures.  I would have spent more time when understanding and processing was much better to tell small stories about the good times in our life together and recall special holidays and things that my LO did that made my life so happy.  I would also remember to say, "I love you," louder and more frequently.   And hug a lot more.  Definitely, slowly get things put into place - again; slowly, so that there is not a lot of needing to do that once the dementia became more difficult as change is the enemy of a LO with dementia; it is that routine and structure that is calming.

I would have spent time going to breakfast or lunch to favorite places as my LO liked the simple things and was not a traveler.  I would have had her sisters fly in to have a wonderful visit before things drastically changed. Contacts.  

And . . . I would have read, read, read far more about dementia and how to communicate and how to deal with problem issues . . . I had to learn the hard way and for awhile flew by the seat of my pants until I was better educated.

So much more, but right now it eludes me. You are off to a very good start and seem to be grounded and looking forward to anticipate the future needs; that will keep you in good stead. Your wife is indeed blessed to have you by her side.  I send warmest of thoughts your way.

J.

Jeff86

Excellent inquiry.  I’d answer with both things I did, that were right, as well as things I wish I’d done.  Two aspects to this question:  practicalities, and quality of life.  

 Practicalities:  getting finances and legal documents in order.  We had a major rethink of our estate plan, titling of assets, naming of trustees and POAs, and so on.  We got it done, but just under the wire for my DW’s ability to understand and knowledgeably consent to the plan.  

I would also assemble the care team as soon as possible…and, with the benefit of hindsight, not have engaged in as many futile, time-consuming and expensive efforts to seek solutions to this intractable inescapable disease.  

I might also have considered, earlier in this process, whether a move to a smaller, single level home would make it easier for both my DW and me. 

Quality of life:   My DW was diagnosed in early 2017.  That year, we went to Belgium and it was a marvelous trip—my DW enjoyed everything we did and saw.  The next year, we went to Africa, and it was touch and go—she enjoyed it in parts but also lost interest at times.  The following year, I began to plan a trip to the Netherlands but I stopped when I faced the fact that it was too late.  My wife could no longer enjoy it, was frightened on a plane, and it was more difficult to deal with dressing, bathing and incontinence issues away from home.  So the takeaway is to go wherever you want to while it’s still doable.  

I’d also encourage family to maximize the time they spend with your DW now, while she still knows them and enjoys their company.  

So, make and record/memorialize memories now.  Eventually, your DW will not remember them.  But you will.  And you’ll take some comfort knowing you did whatever you could to give her the best quality of life you could figure out for her.  

Rick4407

Most of these I did as my DW's dementia deepened.  They are not mentioned very often so I shall mention them.

If your DW has good jewelry, it needs to disappear.  My DW was just as happy with costume jewelry.

In the bathroom things, like makeup need to be gone through.  Finger nail polish and polish remover need to disappear.  Hair spray, spray deodorant,  need to be gone.  My DW is down to just tooth paste all else is gone. 

Jo C mentioned the photographs and files than need to go.  As my DW progressed lots of things disappeared, fancy lingerie, shoes that tied, high heals, clothing with small buttons or small zippers.  She now has a very limited wardrobe, of sweats and pajama jeans from Amazon.  She wears only white athletic socks, cotton underwear and no bras.  

It was a slow process over the course of a year or two.

I purchased and installed a 6 sided waterproof mattress cover.  I have absorbent pads and depends etc., just waiting.   I have some shaving cream for clean up.

I found and started using some one once a week for general house cleaning.  Same for yard work so that I could stay focused on DW.  

Read here a lot and be ready for each step down.  Lastly prepare your self for a very difficult and sad journey.  Rick        

Ed1937

You have some excellent replies above. I can only add one thing. We have an area rug under the dining room table, and it protrudes quite a but beyond the table. I put double stick carpet tape around the perimeter of the rug. It works well to keep her from tripping on the rug. Removing it altogether would be a better solution, but it works for us.

toolbeltexpert

Jo C. wrote:

Jo C. You covered so much thanks for your time to create a comprehensive list. You mentioned all the important papers. My wife just brought me that file she had always maintained. I am going thru it and putting the realy important papers in our gun safe. I was so glad she gave them to me without me asking. You mentioned taking picture. Of what? I take lots of pictures every day of my Dw, my wife isn't  a traveler either, I have starting having  more meals out and little trips to state parks, slo rides on back roads. Was it hard to close those open accounts? I have a dpoa. Our mail box is a 1/4 mile from the house and I check it early and if she's with me I just don't  pull the mail out till later. I copied your list and will read it to glean the stuff I need to do. I read and watch the videos from Teepa Snow and have been for a few years at least. How did you finally find the right specialist. I would have thought a board certified person would have been how you would know. Thanks for your time I do appreciate you.

M1

Great, useful, thoughtful thread

Jo C.

You already have the photographs done well; I was not as proactive with that while my LO was still at a higher level of functioning.  We had photos prior to the onset of dementia, but not later.  I would like to have done that; especially at Christmas and other special times and sometimes just during gentle times with no special overlay.

So . . . this is the point at which I take off my Peer Volunteer hat and I am not recommending you do what I did at all; it is simply a telling of what I did regarding closing accounts.

I needed to close all of those 16 open credit accounts and I also wanted to cancel two of the three credit cards.   When contacting many of those businesses, I was told they needed a copy of the Trust documents and other identification information as well as written proof of my LOs dementia and the lack of ability for my LO to manage financial business.  AND in each case, it would take about a month to get to completion. 

Well . . . what I did after thinking and thinking about the ethics of it all, (even spoke to a Pastor); I decided it was all too much and took too long.   So; I knew my LOs social security number, knew my LOs mother's maiden name, where my LO was born, where my LO went to high school, and all else that might come up as an identifier.

I contacted each company by phone and pretended I was my LO, using my LOs name and provided the identification password(s) as mentioned above.  I was able to get the accounts closed on the spot.  I also requested to have "my" name taken off the marketing/advertising lists and requested no mail or telephone outreach offers, etc.  That was honored.  It did feel uncomfortable doing this, but there was SO much that needed to be addressed in so many ways, I did not have the time to go through the usual way.

When my step-dad developed dementia and became highly compromised, my step-brother did the same for his father's accounts that needed closing as he too was beginning to cause much financial chaos. 

Banks were a dilly.   My LO had a Trust; but two of the banks used would not honor the legal Trust; they had their own documents that they wanted signed and notarized and to be audited by their attorneys.  Fortunately, in early days my name was placed on all accounts including checking.  At one point, my LO was trying to plunder the accounts to take ALL money out and, "give it away."  Truly.  I was able to go to the bank and immediately, without my LOs knowledge, close the existing accounts and immediately reopen them under new account numbers with my name, my step-brother's name with right of survivorship for my LO.  That was a swift do it right now necessity; within the day to avoid disaster.  Yes, I know I tip-toed the line of ethics and also skated across the ice of legal possibilities, but protection of my LO was the biggest item to preserve assets as much as could be for the needs of the years ahead as the disease progressed, and they certainly were needed.  I always saw to it that my LO had access to some money to make smaller purchases and so that there would be a more comfortable feeling.  When I provided money for the wallet, I did it in one's so that it felt like more.  Twenty or thirty dollars in ones feels like a lot.  My LO did not go without; if there was a true "want" or a need, it was provided.

It is important to remember, there is no perfection in all of this, only the best you can do under the circumstances with the challenges at hand.   I had to remember I was not doing anything TO my LO; I was doing something FOR my LO.   Those were difficult times until all was settled. 

Making any changes became a significant problem issue farther into the disease.   My LO by that point could not tolerate even the tiniest changes.  A new crockpot for the house?  Outrage and acting out until the offensive item was removed from the house.  Same when a new vacuum cleaner had to be purchased as the old one gave out.  Had to hide it in a storage closet and use it when LO was otherwise occupied or gone elsewhere.   Pretty new sheets for the bed - big time acting out if I tried to put them on the bed.  Sameness; routine, structure . . . . for my LO, necessary in the smallest and biggest ways was the comfort level.  Any large changes that will be needed in the house, it is probably a good idea to do that very early on before things get to the point that they cannot be processed or tolerated.

My step-dad, after the finances were secured was very easy during his dementia journey.  He was laid back, easy to care for and stayed fairly high functioning right up to the end. 

You are a very motivated, loving person who is planning in advance and have a solid ability to problem solve.  Hopefully, the course of disease will be an easier one and your personality and kindness will go far in helping that to be so.

J.

Crushed

I just noticed that it has been exactly 8 years since my first post here
Thank you friends for all the support and care 

 
DW was MCI in 2010 , EOAD 2012   before she was 60
So much depends on you LO  and how they react.

I had always been the cook and homemaker. I had been a caretaker and had worked with dementia and brain damaged people 
I took over all finances immediately.  All checks and payments were electronic if at all possible.  I had a bullet proof state approved power of attorney and cut off any bank or institution that would not honor it.  I had the pleasure of withdrawing a very large account from a bank with the comment to the manager that it was entirely due to "the the endless intransigent stupidity of the corporate management"   
 
2012 Neurologist told her "Doctor to Doctor" that she could not drive 
Last day of "work" was April 2012  when her papers went to the Library of Medicine  
She asked me to "take her to see animals" so I did 
I also sued OPM to get her federal pension properly calculated.  She believed I was teh best lawyer in the world and supported me totally in any decision.  
From then until October 2017 I simply did whatever she wanted that was not dangerous .  

I  taught my last class in 2013, she came to every lecture.  If there was a conference or a meeting she came with me  I had the house renovated  for single floor handicapped living.
We traveled  to Europe, South Africa,  Yellowstone , the southwest and the Pacific coast.I made her feel loved and wanted and desired and desirable.  

 
Warm friendly marital sex was there any time she felt like it.

One day she was with me at my barbers and he said his wife would love to cut dw's  hair.  They fussed over her and insisted she sit in the chair up front since was "good for the shop for people to see such a lovely lady getting her hair cut".  They cut her hair for the next several years. 

 
 So as they say "We got busy living "  

She was 65 when she went into memory care  But I know I did everything I could before placement to give her everything she wanted.  We were of course fortunate that angry explosions were rare, we were in good financial shape,  we had the support of two amazing daughters, no other health issues,  outstanding medical care and over 35 years of warm partnership trusting marriage.      

 
 

toolbeltexpert

Jo C. wrote:

You already have the photographs

That for sharing again some good advice. I learned about the changes 3 years ago I bought an air fryer to get away from using deep fryer. That didn't  go over well, it is still in the box by the pantry if I was to move it now that would be change. I just got a dyson to replace our aging one, lucky for me it's so close she didn't  notice. When it comes time for me to close those accounts I may not know about yet, I will go the same way. When we got married we became one in all things. I like your " I am not doing things to her but for her. Gotta go hearing aide appointment for my dw.thanks so much for sharing your experience with us all. 

J.

toolbeltexpert

Crushed wrote:

I just noticed that it has been exactly 8 years 

Crushed your awesome, sounds like you did everything.  8 years of sharing sorry you had to but glad you get to.

jfkoc

I would have worried less and instead let go of more and enjoyed what time I had with my husband.

Otterly

I can't thank all you enough for your shares. Wonderful and excellent advice and help.  

We have a vacation home that we have gone to for the last 8 years,  My DW and I will go more often now- one, for the relaxing stress-free atmosphere it gives her and two,  to keep that home a comfort zone for her.  My worry is that it  may become a strange place so I want to be there often.

This past year I  added what I jokingly called the Queens Nest ( A master bedroom suite totally self contained). In it life is simple for her. ( It's in the mountains of NC.) 

We will travel as soon as Covid will allow us, but we have gone to most of our Bucket List places.

Beachfan

You have received a wealth of great advice and suggestions.  Mine is of a very practical nature- - don’t go looking for trouble.  Don’t waste a minute worrying about what might occur with this disease.  Incontinence, wandering, aggression, hygiene issues, sleep disturbance; you may encounter some, all, or none of these issues.  Prepare for any and all occurrences, but don’t obsess - - live in, and enjoy the present.  It’s fleeting. Stay strong.

We, also, have a vacation home at the Jersey ‘shore, since forever.  Thankfully, it never became a strange place for DH.  He was comfortable there right up until he entered MC.  Enjoy your getaway.  

abc123

I think we wait until it's TOO LATE to do things/make changes to our house, hire help, bring a LO to live with us, because we don't understand, we can't possibly understand what's happening to their brain, what's going on in their mind. We love them so much BUT we just wait too long.

Roll up the rugs. Install the grab bars. Declutter the house. If moving will help make life easier then move now. This is just my 2 cents but I speak from experience and loss of time that could have and should have brought special blessings to my LO's and myself.

We waited until my Grandmother burned her arm with the iron to jump into action. We moved her immediately but should have done so sooner. My MIL was mid stage Alz before anyone noticed due to her original personality. When her only son(my husband) was diagnosed with terminal cancer she rapidly advanced to stage 7. We took care of her for a short time here at our home. It was a special time. My husband bathed his mother and cared for her while he was too weak to bath himself. The three of us took care of each other as best we could. MIL had a terrible case of sundowning every afternoon, exit seeking and packing her things and going home. My dearest memory of those days were her flipping on the light in the middle of the night and climbing into bed next to me! I'll tell ya'll all one thing for certain, The Holy Spirit was in our home! Every day! MIL passed away 7 months after my husband. She was peaceful and childlike. Had no memory of ever being an adult. She spent her last days waiting for her parents to come home. 

As far as my own parents, shame on me and my dad. I should have put my foot down 5 years ago but I didn't. So I try to move forward and be thankful for the things we have recently accomplished with no woulda/coulda/shoulda's.  

CStrope

This is a tough question that I've asked myself many times.  By the time my DH was diagnosed, he was only scoring a 17 on the MOCA, so I often ask myself if there would have been benefits to an earlier diagnosis.  The signs were there, but his ability to cover, and my ability to ignore, allowed things to go on for at least 3 years before official diagnosis.

Do I wish he had been diagnosed earlier?  I'm not sure.  It gave me a few extra years of not having to admit to what I was dealing with, ignorance can sometimes be bliss!  I think about what may have been different, and the only positive that would have come out of knowing earlier would be in my acceptance of all the changes in his personality.  I know that knowing earlier would not have changed the eventual outcome, and I think it may have caused more upset to DH than anything.

In the 18 months since diagnosis, I've accepted what this chapter in our lives/marriage will be like.  I know so many people say travel and do other things that you want before it's too late.  Experiencing things with my DH has not been enjoyable for so long, I don't believe this concept works for us.  They say some of the effects of this horrible disease can start 10-15 years before we even know it.  I believe that's true.  So the personality changes to my DH prohibited us from enjoying life long long long before diagnosis, and are no longer possible.

GothicGremlin

I'm like CStrope, I've thought about this question many, many times. It haunts me.

My LO is my younger sister, not a spouse or a partner, so I hope it's okay that I'm weighing in on this thread. I often read posts in this forum, but I think I've only posted once.

Peggy was diagnosed in Aug. 2018, and I immediately (silently) freaked out. I didn't know a single solitary thing about Alzheimer's. I'm a very practical person so I did all of the practical things immediately - became Peggy's POA, we toured assisted living/memory care facilities so that I could get her buy-in "just in case" for later on, and got all of the other legal matters in hand. So there is nothing I'd change there. I think I did well on those fronts.

I guess the one mundane thing I wish I'd dealt with is Peggy's storage space that she's had for years. And years. And years. I wish she and I had gone through it and emptied it out back in 2019. We didn't, and covid has ensured that it's still there waiting for me to empty it out. I'm sure Peggy doesn't remember it even exists and I'm not going to bring it up. If I'm very lucky I'll get it emptied out this spring. It's an overwhelming thought for me.

What keeps me up at night is the question of when was this "then" that we're talking about in this thread? For me, it was probably when she was still in the MCI phase. Over the last few years I've quizzed all of Peggy's friends, including the friend who was her ex-supervisor at work. The ex-supervisor told me that Peggy started "struggling" at work back in 2011. That means Peggy was 52ish when she first hit the MCI stage.

I wish I had known back in 2011 what MCI looked like, or that MCI was even a thing. When I look back, there were behaviors that would have tipped me off had I been aware.

Another question that nags me is could we have kept her in the MCI stage for longer if we had known? Like, could we have implemented the "best practices" back then, and would they have made a difference in timing? Could we have bought her an extra year? More?

During the entire time Peggy was in the MCI stage she was living in San Jose and I was living in San Francisco. SF is only an hour or so away, so had I known about MCI, I could have easily have taken Peggy to the gym with me (Peggy has never seen the inside of a gym, probably not since high school).

My s.o. and I could have also helped her out with cooking. The kitchen is not my natural habitat, nor is it Peggy's. The difference for me is that my s.o. has amazing kitchen skills, and he loves to cook. I happily do all of the clean up. I know he would have been happy to give Peggy some kitchen tips, and to show her how to choose nutritious food. And if she knew what was coming down the road, I know she would have done more on her end too.

I guess this is all my long-winded way of saying if I had it to do over, I would have gotten involved much, much earlier than I did. My cousin and I started working on Peggy to go to the doctor about 9 months before she was diagnosed, but that was far too late.

Peggy went into memory care in late October this last year, and is doing okay there. She actively likes it, so we're both lucky with that. Still, I wish I could have staved this off for a while longer.

Crushed

GothicGremlin wrote:

Another question that nags me is could we have kept her in the MCI stage for longer if we had known? Like, could we have implemented the "best practices" back then, and would they have made a difference in timing? Could we have bought her an extra year? More?


Peggy went into memory care in late October this last year, and is doing okay there. She actively likes it, so we're both lucky with that. Still, I wish I could have staved this off for a while longer.

As the Scots say dinna fash yersel'
 
 Don't beat yourself up over something that you could not change.  DW was a world renowned physician/ computer expert. She started "slipping" in 2009 we had her diagnosed a** MCI in 2010.  She was simply in a position that required such fine mental skills that the slightest failure was obvious.   We got the best of medical care Kaiser, Johns Hopkins , NIH  you can sometimes treat the symptoms but absolutely nothing stops the underlying pathology DW was 7 years from MCI diagnosis  to placement  8 years from the first symptoms we can find.  DW did not smoke or drink and could and did wear her college clothes.  I was the cook and her diet was perfect. 
   

 

LadyTexan

This list is fantastic.

I wish I had recordings of my husband's voice before he declined, when we were having simple, mundane or meaningful conversations. His speaking ability has changed. I miss his soothing voice. He still communicates quite well, but it is slow and choppy. His vocabulary is now diminished.

toolbeltexpert

LadyTexan wrote:

This list is fantastic.

I wish I had recordings of my husband's voice before he declined, when

Ladytexan  I know what you mean. When I used to visit MCF I would sing with the residents for an hour, sometimes one would have a special  song that they sang,usually not one that was well known "old gospel". I would record them and those are so special to me and I would share them with the families. I have tried to catch my wife singing her favorites, not to successful yet.

GothicGremlin

Thank you for that, Crushed.  I appreciate hearing that.

It sounds like between the two of you, you did everything right, and still, the timing of it all is almost casebook.

The timing has been that way with Peggy too.  It's just relentless.

Dussing

Loved your response, and details.

However, with dementia situations, please everyone remember to tell your LO 

"I love you" this much (expression of outstretched arms works well) every day

I take care of my 94 yr mother, and every time I show her how much I love her she smiles widely!  Totally worth it!

Otterly

I have not visited this forum for at least a year. The main reason is that I was not interested in hearing the finality of “theee is no hope”. . But I watched a dementia YouTube Careblazers episode from a year ago this morning with Dave, I think he lives Michigan. His story was very similar to mine. He is a member of AA, and Dave shared some learning he took from AA and applied to his wife’s illness. “ Take one day at a time”

He also mentioned this forum helped him greatly. So I am revisiting here. We have moved full time to our mountain cabin. Life is simpler. My wife, unlike Dave’s, is fully aware of her disease. I have taken much of the advise above. The financial ones were the most simple..we did an irrevocable trust for our assets.

Thank you for all your comments they are very helpful.

I heard some one say when asked what he would share and his comment resonated very strongly with me. I paraphrase:

“I am just so happy that I’m able to care for my loved one. This disease has given me a new mission in life and I don’t know what would happen to my wife I wasn’t around.”

I could not agree more.

Gregg

Ed1937

Gregg, welcome back. I'm glad you're giving us another shot.

HollyBerry

We are not as far along in this journey as some others who have responded. Right now, what I think of is this: I wonder if we had made more of an intentional effort to visit family and spend time with friends regularly during the first years, if we might have maintained some helpful connections that have faded away. When there's a noticeable change in a person, other people get scared because they remember them so differently.

The other thing I think of is about arguments and expectations. We clash when my expectations are out of line with what she can do, which is a moving target at best. Managing stress - for both of us - has been an ongoing challenge. I think focusing on managing stress for both parties, right from the start, would have been really helpful. We tend to focus on tasks and duties and independence but maybe we should be stepping away from "can she make breakfast by herself?' and think about "what habits can we build to manage each other's stress and prevent it when we can?"

Otterly

I just reread this thread and all the excellent suggestions. Thank you all again. ( It’s hard to come here and read more about the inevitable) .

We have moved permanently to our mountain home, and so enjoy our time together. Many of you have said this here or in other posts…it is a very lonely journey that does not end well. So we try to enjoy what we can. DW spends most days in bed until mid day and is too self conscious to do much socially. We have a very small number of neighbors and all have been supportive.

It took me awhile to accept the inevitable. I still study as much as I can about the disease, but my conclusion is, no matter what kind of dementia you LO has, each case is different and there is no cure. ( the exception may be Bredersons protocol, but the regimen needs a motivated patient AND an motivated care giver)

something’s I’m glad I did:

1. full financial and trust overhaul , very early so LO participated
2. Built an addition onto our cabin that is a full suite for LO. We both live in It. Kitchen and laundry in the main house.
3. Picture album of outfits LO loves. As she wears an outfit I add a picture to the album. Helps her decide what to wear.
4. dry erase board in bathroom to help ME remember the date.😁

S. Lynch

Dear Otterly,

What a valuable question you’ve asked. I’ve learned so much from this post. This forum has been the biggest help for me. I didn’t really check in until a year ago. I wish someone (medical team) would’ve given me this resource sooner. Reading these discussions can help guide you through some aspects of caregiving and just give much needed support along the way.

My DH (66yrs) was diagnosed 2 years ago, after a year of looking for answers with evaluating medication, CPAP machine, diet. Two months after his MCI diagnoses, he had a severe concussion. With the help of our neurologist, he received cognitive speech therapy and physical therapy (he was a fall risk). The concussion made his condition much worse. He has regained some ground after about a year. He no longer drives, initiated by concussion, and no longer gives me grief about it. I did put an AirTag in his pickup just in case. He does drive a side by side on our farm ground, and I have one ordered for that as well. We redid our legal documents and I started managing our affairs 3 years ago. Having a good relationship with our financial advisor and attorney has helped.

DH was never one to want to travel much. My daughter did take him to Scotland for two weeks last year. He enjoyed the trip and has wonderful memories from it. He did have issues- times he wouldn’t get out of the care, a few times where he walked off, immature behavior. It was emotionally difficult for her to see how he had advanced in the disease, but she has no regrets in the trip. My son, who know farms, calls or visits to talk about farming, ask DH advice. Even if he can’t remember parts or gives bad advice, he feels included. He and I make small journeys to his favorite places. It is important to know your own limitations in caring for your LO when away from home. I used to be a teacher and plan most outings like I have a 7-10 year old companion.

It took us about a year to adjust as DH’s family. I think we all needed time to grieve. Sometimes this didn’t look very pretty. Now that we know he has AD we can understand some past behavior that left us feeling forgotten and insignificant.

I wish I had created a back-up plan for emergencies. I have a chronic disease and it has been difficult to manage his care when I relapse. One thing I have learned the hard way was creating a back up plan if I am too sick to manage his daily care. This spring I relapsed and could not tend to his needs as well as before. Our routine was broken. He started to slip and go downhill. This went on for about 6 months until I was hospitalized for a week. Thank God for my daughter could take leave. We were in a bit of crisis mode for a month. Now we have a plan if an emergency comes up. I can’t tell you how important this is, and what a relief it is to know it is there. We live in a very rural part of Washington and our medical services are 90 miles away. I have three friends who have agreed to step in if I am injured or hospitalized for at least 3 days, and my daughter and son can coordinate care after that. Part of the journey as the caregiver is knowing your own mortality and understanding the impact if something happens to you.

Some things you can read about and be more prepared, and some parts you can’t predict. May you feel support from all of us, and be kind to yourself.

ghphotog

I don't know what I could've done differently. Like Bill said, it sneaks up on you and then you wake up some morning or you look over at your spouse as you sitting together and the realization that the person you knew is long gone and it's all on you now. Friends always talk about helping, some do on occasion but it's too overwhelming for them to do it more than once or twice even when they say they've had loved ones with dementia and they can "handle" it. No they can't. They don't have the same investment that you have. They are just acquaintances or close friends but they just can't do it for someone they don't care so deeply for.

I was fortunate that my DW never made an issue about not driving any longer. Family photos don't mean as much any more. Why do I still wear my wedding ring? IDK? My wife just looked at me and laughed the other day when I told here we were married and had been for 30 years. She still loves me and depends on my but I'm just a nice guy that's there for her and that's about it. It can be so heartbreaking when you fully know and understand that the person you knew is truly gone and will never be back.

I would've saved much more money. I've always let my wife handle the finances because she was good at it and never procrastinated about paying bills as soon as they came in but she was never really good at saving money. We were ok so I didn't worry about it. Once I realized she could no longer write checks or handle the money and we were bouncing checks I took it over and managed to save enough to hold us over until I start taking SSI in a couple of months. Our financial "buffer" is now dwindling past my comfort zone.

I would've let her know I loved her more, I would've bought her more flowers and gifts. I would've made her feel more like the queen she is. Woulda, coulda, shoulda, life is filled with those things.

Now all of that is long gone, she will never remember that I wasn't the best husband she could've had. She deserved much better than me but she will never know that now. She's stuck with me.