Soon, another year down

ghphotog

It's amazing how fast time flies when all you can see is from one moment to the next. This same time last year I thought my DW would be in MC but she's about the same as she was the year before, just creeping along ever so slowly. I wonder where we will be this time next year. Probably in the same place I am now.

Quilting brings calm

my mom is cognitively pretty much the same as she was 4 years ago - after she recovered from a UTI. Emotionally she’s not crying as much due to medication, but she’s still whiny and needy. Physically she’s slowing down a lot. Can’t walk two steps without her walker, and now has wet macular degeneration. Step-dad has been diagnosed at stage 4- but it’s the weirdest stage 4. Mostly paranoia and delusions about his health. His lack of education made testing him not quite so accurate . His physical health is deteriorating, which you would expect after 20 years of COPD and heart issues.

Neither appear to be in that last year of life, nor be in the short line for an MC. So I’m envisioning a repeat of the last year too and to be in the same place as now at the end of a year.

Whyzit

Ghphotog I am experiencing the same thing as you…..wondering when placement will be justified. My DH is very mellow and after 13 very slow years of progression I am ready for a change. He has absolutely no stress so why shouldn’t this just plod along?

It is tiring and boring to be doing the same things day after day. I don’t want to clean the bathroom multiple times a day anymore, or be the activity director for my mellow content fellow anymore. I long for meaningful conversations and enthusiasm. We can’t afford MC so we have to have medical issues that will require long term care through Medicaid. So I guess I’ll count my blessings and seek contentment where I am and stop my whining.

When I was a child my Mother would always say, “If you think you have it bad just look out the window and you will see someone who is worse off than you”. She is right but oh how I wish….

Laugh of the day: DH wants to go to Australia for our 60th anniversary next year. Really? We can’t even make a 5 mile adventure trip to McDonalds drive through window for a McDouble and Hot Fudge Sundae without being concerned about getting back in time to make it to the bathroom. So enough of my sarcasm. Next year we can enjoy a travelogue of Australia on PBS and not worry about the bathroom.

Best wishes

White Crane

It’s amazing how fast the years go by. DH continues his slow decline. By next year, who knows. He may be just about where he is now. I have so many questions and not enough answers. All I know for certain is that I’m tired and I’m trusting the Lord to guide me through this.

Kibbee

When I look out a year or two (or 5 or 10) I feel like we could be pretty much in the same place that we are right now. Other than his neuro-cognitive condition DH has no concerning medical issues with heart, lungs, organs, diabetes, etc, that could mean a shortened life.

But when I look backwards I realize how much progression has taken place. 2019 he was home while I worked, walking just fine, and managing all ADLs. 2020 still doing well but starting to have issues with gait and balance. 2021 starting to have problems with falling. 2022 falling becoming more frequent but able to get up with assistance. Began using a wheelchair most of the time, and needing help with transfers. 2023 strength and weight bearing ability declining, starting to become really difficult to assist him to get up after a fall or to do a transfer. Enter the Hoyer Lift ( a God send) and a hospital bed.

So who knows? Maybe he’s progressed to a point of “stability” and we’ll just cruise like this for years. Only time will tell.

Joydean

It is amazing how the years have passed. Dh is completely incontinent but still thinks he can use the bathroom. So mopping up pee and cleaning poop in tiring. We have been on this journey basically since 2001, he is easy to care for as long as everything goes his way. Can only say a few words but that I can most times figure out what he is trying to say. He can’t walk very far without getting tired or starts getting panicky. That means from one room to another. I am tired And stay exhausted! But I do know God is with me and will give me the strength to carry on.

gampiano

hello everyone,

My story is similar, many periods of slow decline, sometimes so slow that i wasn't even noticing the subtle changes. I, too, felt that we had reached a place in the road and were stuck there. Then. this summer, after 3 consecutive UTIs, my DH began to rapidly decline. I was amazes at how quickly this next stage appeared, as if it had been lurking and waiting for the opportunity to reveal itself.

The most difficult aspect of this new phase has been the personality change from agreeable and cooperative to defiant and nasty and aggressive. The past few weeks have been hellish as the DR. tries to adjust meds, introduce new ones, etc. I think we might be close to "managing " the insomnia, so that would be a blessing.

One more thing. Every year my daughter makes a family calendar and presents it to us , We love looking at the pix from days gone by, as well as the more recent ones. Today is October 1, and when I flipped the page, there was a great pic of my husband standing in front of a pumpkin patch. He was smiling, looking like the man i've known for 56 years. This was take only one year ago, and the transformation that has taken place in his appearance is dramatic. There was my "aha" moment. The realization was breathtaking.

Maureen

Jeanne C.

A year ago I had no idea what was about to happen. I knew something was wrong but didn't suspect dementia. Now we're at stage 5 and I take it from day to day.

Ghphotog, you're doing the best you can for your wife. Hang in there. We're on this stupid road with you.

ButterflyWings

Whyzit, I am with you. My solution (sort of) has been to pack up the meds, incontinence briefs and adult wipes, and go! We were homebound for a long time due to his resistance to leave but now, is more compliant.

I figured if I can clean the bathroom (and butt) multiple times a day at home, why not see a few more interesting sights 😉and take DH with, as long as he remains mellow and mobile. We don't have a lot of discretionary funds, but when opportunities have arisen this past year, we go. So far, so good.

Would you be able to recruit a companion caregiver to travel with you all for your 60th? Sure, it wouldn't be the same as having your DH pre-dementia celebrating your anniversary together like before, but maybe there could be some precious moments for you both, and priceless memories for you, rather than just the travel channel.

HollyBerry

OMG, the thought of doing this for many, many years is terrifying. I dream of the things I'll do, once I can... and that needs to happen while I'm still young enough to enjoy them! My partner was diagnosed in January of 2020 and we actually enjoyed the pandemic - lots of hiking and biking, caring for hospice kitties, a new dog. Yesterday I managed to trick her into going to a county park about 20 miles from home, complaining the whole 30 minute drive about how far we were going, blah, blah, blah. This morning I got an earful (about six times) about why are we doing "all this work" on the house and spending all our money. She just looked at me like I was out of my mind when I suggested taking the dog out the front door on a leash, rather than letting her into the back yard where the painters are working. The progression is clear but not terribly fast. She won't be sweet and easy. Part of me wonders why we encourage all these drugs to prolong the agony.

ghphotog

The thought of carrying this on for many more years to come is terrifying. I'm also still young enough to have a few good years left if I can ever get through this. One day at a time and before we know it we have another year down.

ButterflyWings

@HollyBerry and @ghphotog

Right there with you all. We are peeking at Stage 7 here, with so much loss of capacity in the last year +, though I am a little shocked to realize this weekend is the 5th anniversary of DH's diagnosis. Which is also my diagnosis in a sense, as yes...we both are on this frightful roller coaster ride. Together. Just holding on for dear life while we still have no hope other than to crash and burn with the least amount of trauma possible. Crazy.

It is sobering to note that the final stage alone can last several years. I, like many, believe it is not wrong to hope our LOs go suddenly and sooner than later. It could spare us both suffering that can't be understood by anyone else but those of us riding this runaway train to nowhere good.

I try to share uplifting feedback as much as possible because it is important to find the small wins and moments of joy on this hard journey. But again, I am right there with you all at the moment. Shaking my head.

toolbeltexpert

Time doesn't slow down like Alzheimers slow progression, when I think 13 going on 14 soon and realize how much longer this could go on is sometimes overwheming, so it's one day at time. I am thankful she can still walk alittle at mc in the courtyard we love the fall so why does that seem to go so fast? This is our second fall here!

nancyj194

Mostly I read and do not comment. There is so much to learn from this site. Thank you everyone. Today I feel like commenting.

My DH was diagnosed officially in 2017. I knew in the early 2000s that something was wrong with his memory. My family said it was just his age. The family doctor ignored my statements until he no longer could. DH was 60 at the time he took early retirement because he could no longer do computer drafting for his engineering job plus he would get lost in places he had driven his entire adult life. He is now almost 84.

Time has moved on and we are now at stage 6, I think. His neurologist at University told me Alzheimer's would be slow going and it has been. The last year has been moving a little more quickly followed by an emergency appendectomy two years ago this fall and then covid for the first time in July. Big changes with his strength and mental capacity. Slowly he has returned to what he was before covid with his strength, which was gone. I used the belt a lot to help him up from his recliner and bed, but could not get him up off of the floor when he fell.

He refused in the beginning to take any Alzheimer's drugs, probably because he believed he did not have the disease. He was on so many other drugs for heart, BP, Barrett's esophagus, etc., I didn't mind not adding more to the mix.

His long time angry mood at everyone went from constantly angry and yelling to mellowness. After a bad car wreck in 2013, our son told him he could no longer drive. The "Road Warrior" was finally taken from behind the wheel the car. There was argument and bargaining, but finally he stopped trying.

My life did get so very much better and yet I know that there is worse to come. I try to meet each day with gratitude.

As Butterfly wings said, it is not wrong to hope that our loved ones go sooner rather than later. I hope that, too.

Howaboutnow

Every year i put up a Christmas tree and I wonder, how many more. How many more will pass as we are suspended in a life that doesn’t feel like living.

JeriLynn66

I too wonder how long this awful disease will continue and pray for my father in law to simply go peacefully to sleep..

Ed1937

BW said "I, like many, believe it is not wrong to hope our LOs go suddenly and sooner than later. It could spare us both suffering that can't be understood by anyone else but those of us riding this runaway train to nowhere good." That's so true. I have always said my hope was that my wife would go before I do. But not for the reason most people would think. I felt that way because I knew whoever was left would have to suffer the effects of losing the other. I didn't want her to bear that cross.

When she was lying in a hospital bed, and had a gastrointestinal bleed, I told them to just let her go without doing any emergency surgery. Her chances were slim to none, and I didn't want her to suffer anymore. That was more than 15 months ago, and the pain is still here. But hers is gone.

Many people say we treat out pets better than we treat out LOs. About 3 weeks ago I had our dog put down because I didn't want her to suffer either.

ghphotog

Last night I was trying to remember exactly when it was that I knew for sure something was seriously wrong. She retired from NNSA formerly DOE in 2015 and just wanted to stay home all day and watch TV. I didn't like it but hey she's retired and if that's what she wants to do then so be it.

Last night I was looking through all of the photos on my phone as they are time stamped. In 2018 we took a train ride with some friends and at one point the train stopped for lunch about half way. There was another train going the opposite direction. She followed me and completely trusted me. I put her back on the train in what I thought were our original seats. I left her for a short time to visit the restroom and realized we were on the wrong train. As I came out she was sitting by the window looking down at at me and there was just something about the way she looked at that moment I knew for sure somethings wrong. I snapped a photo of her looking at me through the train window. That photo still haunts me today.

I barely got us back on the right train before it left.

She is now somewhere in stage 6, not sure where as many stages seem to overlap. She seems to have progressed fairly fast so maybe it won't be such a long slow ride but who knows? I suspect I have a few more years to go.

CStrope

This week is the 3rd anniversary of my DHs diagnosis, but like so many others, I now can recognize symptoms that were there for years prior. I keep a little journal by my bed, not to write thoughts and feelings, but to document changes and happenings. Too often the days, months, and now years just pass and it seems like nothing changes. The journal helps me mark the changes and look back so I can understand that DH is getting worse.......I'm just adapting to the progression.

Ed1937

CStrope, that is really a good thing to do. I started doing that, but for some reason I quit doing it. A few days ago I looked at some of my old posts, and I was amazed at some of the things I read. My advice would be to keep writing.