My first post from 6+ years ago

JoseyWales

I'm just home from visiting DH, and in a reflective mood. Not a good, reflective mood. I looked up the date I joined here - 5/22/2016 - and realized that there are very few people who have been here longer than I have. Crushed comes to mind, and Gig Harbor has been here about as long as me. I remember saying, when I first joined, that living with dementia 20 years from diagnosis is a horrible thought. Several people told me that early onset goes much faster. I believe Crushed and I would disagree.

I don't post much anymore because my life has calmed down a bit now that DH is in MC. I visit him every other day, teach full time, and our 22 year old son lives with me for the time being. I'm still stressed over DH, worried about his care, and wake up from bad dreams related to DH. Then I can't get back to sleep. 

I've copied and pasted my first post below. I wrote it 6 1/2 years ago. We chased a diagnosis for 7 years - that means there's been a problem for about 14 years. I recently found the first MRI that was done - it completed over 15 years ago. So much for early onset progressing quickly.

I talked about getting DH on disability in my first post - that was the one thing that worked out for us in all this. He was approved the first time through, even after his neurologist backtracked and said that she wasn't going to say he couldn't work because she didn't know him well enough. Sheesh. 

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Hi everyone.  I've been reading here for a while now, and thought it was time to join in.  I'm glad for this forum, although to be honest I wish I'd never had to search it out.

DH was finally diagnosed with an early onset dementia, probably Alzheimer's, 2 months ago. We've chased a diagnosis for almost 7 years now, and had every diagnosis under the sun from stress and depression to MCI and ADD.  I think that's pretty typical for someone as young as he is. He's just 52, with symptoms first showing up when he was 45.  I'm 48, and we have a 15 year old at home.

The doctor's haven't given me a stage that he's in, but I've researched them myself.  According to what I'm reading, he's easily stage 4, and beginning to slip into stage 5. This scares the crap out of me.

Until about 4 years ago I was a stay-at-home mom. We knew then that something was wrong, and I went back to work so that if something did happen, we'd have an income and insurance.  Honestly, I never imagined it would be dementia. I thought more along the lines of his being unable to work the job he had due to depression and anxiety.

DH left his job just last month (I don't know how he kept it as long as he did) and we're in the process of filing for disability. That adds another stress to my life, after I hear how many are denied the first time. I know that Alzheimer's is fast-tracked, but until I see the approval, I'll worry. And his diagnosis isn't officially Alzheimer's - it's just early onset dementia.

I'm actually worried about just about everything right now.  I'm taking all kinds of steps to help our future the best I can, but I'm overwhelmed with planning and appointments and taking care of DH and DS.  And the confusion of how this disease takes away the ability of DH to make rational decisions. He is still so much himself, but any conversation about anything of importance is beyond him now.  He can talk about it just fine for a few minutes, but later remembers only some of the details and confuses those he does remember. Within the same conversation he begins to make mistakes understanding what we're talking about. I've gone to rarely telling him anything of importance unless I can do it in just a couple of sentences.

Thanks for reading if you made it this far.  Finding anyone to share all this with is hard, and this seems like such a caring group that will understand where I'm coming from.

M1

What a trip down memory lane Josie.  I remember how stressed I was just from having 15 year olds at home (two that were only 19 months apart), it's hard to imagine how you coped for so long.  But you did:  and here you are still standing, though perhaps wounded and forever changed, these six to seven years later.

I'm not one for looking back much, it usually causes me more pain than sweet nostalgia.  This is not a journey any of us would embark on voluntarily.  The leaps of faith we take when we partner up and bear children.  

I am glad things are calmer for you, at the very least.  I wish you well.

toolbeltexpert

Josie that is a long time for sure. I didn't post at all for years but I learned by reading. My dw didn't work but its been 12 years since I started questioning her memory trying to figure out what was happening. Now there's no doubt, like you placement came, even though I thought it was gonna be home forever. Dw has been gone 3 months now and I visit daily sometimes twice but if my visits didn't go well I would skip a day or two.

To think that this could go on for 10 more years is unfathomable for me.

Ed1937

Josie, I think we've all heard that EO goes quicker. And I've also seen thoughts where people say doctors just don't want to diagnose people that young, so it takes a long time for diagnosis. Therefore the PWD might have progressed further than someone of older age when diagnosed. So maybe they're looking at the time from diagnosis until death??  But I guess in the each one is unique.

I've been wondering about you. You need to visit more often. We can use another teacher. Best wishes.

Twin Mom

I too have been here a very long time.  I arrived shortly before you did, and like most it has been a very twisty downhill road.  I think we finally landed on "the" diagnosis of FTD.  I can look back and say the initial symptoms probably were all the way back in 2001.  Life as we knew it ceased to exist in September 2015 following an FTD crises which landed us with signficant legal troubles which are still ongoing.  My DH had quit his job and driving in December of 2012.   Of course, I am the only one who realizes all of this and gets to deal with it.  I am tired it is exhausting.  I am fortunate we are not living under a bridge...as we all know there is no "real" help.

Josey I have followed you closely and I am happy for you that you have been able to get DH somewhat settled.  I hope you are able to forge a new bond with your son.   I don't know how you did it having to "go" to work.  I at least work from home and can control my hours as long as I produce enough work to put food on the table.

Buggsroo

Josie your post led me down memory lane as well. About four years ago My husband started demanding where the cats were at any given moment. I knew they were in the house so wasn’t worried. He threatened me saying he wouldn’t go to bed until he had seen them all. So I would look for them. I remember thinking WTF after all they were in the house. Then he became more unreasonable as time went on. 

His mother and sister had Alzheimer’s but I didn’t make the connection. Then in 2019 before Covid hit, he drove me home from work. He decided to try out this little button on the dashboard. Suddenly we were flying through all these little side streets at about a 100km an hour, he was able to make a sharp turn and we crashed into a light standard. He told me after the airbag deployed that he wondered what that little button was. Now I know he engaged cruise control which is meant for the highway, not twisting little streets. 

His behaviour became more bizarre after that and I contacted his doctor. The diagnosis was confirmed and here I was with full blown Alzheimer’s on my hands. He was given different meds such as rispiridone but he became quite manic on it, pacing up and down. Now he is on trazadone and that helps him considerably. 

So this is where we are at in 2022 and now he loops incessantly. It’s been a real ride. 

Quilting brings calm

I’m so sorry Josey.   All those years trying to find a diagnosis and then all the years since. Your spouse, so young to have his life destroyed  so soon.    So much of your son’s childhood affected by this disease.  So much of your time as a wife and mother affected by it.    

 My mom is in her 80s.  She’d already lived a long life when she got her head injury 9  years ago.  It’s possibly part of the cause of her dementia because I’m not sure she ever fully recovered before her MCI symptoms started,  just took us until a crisis to recognize things. But as I said, she lived a long life first and her children were all in their 50s at the time of the injury.  Your family didn’t get that time.  So much of your family’s life and still counting.  

I don’t know why some  families get long lives first, and others don’t.  I don’t know why some families deal with this disease for a short time and others for 15-20 years.  Quite honestly, it’s been 3 years since the crisis and I can’t wrap my head around being being you or Crushed.  What I do know is that this country needs to do better for families of any form  of dementia and any form of mental illness.  Because the caregivers shouldn’t be in danger of dying first from the stress. 

shardy

I rarely post here.. We are coming up on 10 years since we were told EOAD and/or FTD... They eventually settled on FTD and then added VaD and recently decided also ALZ... I'm sorry its been so long.. I can become bitter looking back...

Sally56

My heart broke reading your post. Blessings to you. I'm just starting this journey. My DH is 87 and he can still do many things

Beachfan

Josie,

I have followed your journey (and Gig Harbor’s and Crushed’s) for sometime now as I see similarities among us. I didn’t discover this forum until 2018, although DH was diagnosed MCI in May, 2010. Looking back, I can pinpoint a number of clues from prior years that I missed that suggested a diagnosis of dementia.

I am happy that you are finding some peace and a sense of calm in your life, but I am sad that EOS robbed you and your son of so much. My kids were grown and gone by the time DH was diagnosed in his mid sixties.  I look back on our life, pre-Alzheimer’s, and I have no regrets. For that I am thankful. But you and your son have lost too much too soon. 

I visit with DH at least once a week, and I, too, come home in a reflective mood. I try to remain upbeat for the kids and grandkids, but watching him fade away little by little, day by day, breaks my heart. When he finally leaves me, when reality hits, I will probably fall apart. But until then it’s one day at a time, one foot in front of the other, sporting a smile and a brave face. My heart hurts for you, for all of us; I wish you well. Stay strong

JoseyWales

So many of us here for so long. It makes me so sad.

Twinmom, shardy and Beachfan.... I'm adding you to my list of those of us who have been here forever. 

I went again today to see DH, even though I was just there yesterday. I felt a need to go. I'm glad I went. I talked with a CNA for a while. She's one that is there a lot, and I've gotten to know her pretty well. Today she told me that she just learned that DH was 58, and was shocked at how young he was. I shared some of our story, and that actually made me feel a bit better.

A week ago I visited and there was a new CNA. (There seem to be new CNAs every other time I visit.) She was mid 30's. She lost her husband 4 years ago. He had a heart attack and spent 6 months in a coma in a nursing home. He was 31. I cried for her. She showed me pictures of her YOUNG children sitting with her husband in the nursing home. We talked for a while about the limbo we experience while they're in a nursing home. 

Just rambling now. I'm on fall break this week - I need to get back to school and keep my mind busy. 

Joydean

Josey thank you for sharing. I have been taking care of my dh since 1/11/2001. He was 53 and I was 52. Close to both of our birthdays. He was in a accident, beside all the physical damage he also had a head injury, brain damage. He was never the same, could no longer work, I ended up loosing my career because I needed to take care of him. Even at that time the neurologist told me he would have more problems later on. He never told me what kind of problems and I had enough on my hands just trying to manage each day to ask. I found out in 2017 when he was finally diagnosed with Alzheimer’s.  We’ve been on this crazy road for a long time.  It took me 2 1/2 years, even with all the letters from his doctors, to get him on disability.

Quilting brings calm

Josey - if I remember correctly, you are in Indiana. I have no idea where though( you don’t need to tell me).   If you need to stay busy- call the Threads of Time quilt shop in Danville IL.   They are 5 miles into Illinois from Indiana on I74 and they have overnight beds available for people who are sewing blocks,  tops or have handwork.  Bring your own machine. I’ve gone by myself before.    A single night  might  be a nice change for you.

Gig Harbor

Josey so many have joined and finished their journeys since we joined. It is the same in my support group. I feel like I am the last person standing some days. I appreciate that I have been able to place my husband and he is as happy as he would likely be at home. It is like leading two lives. When I visit and when I am home are so totally different. I hope you can relax during your days off. What you said about the CNA just shows that someone you think has a better life actually has suffered a lot too. We just never know and I think there is so much sadness that I am not aware of in my own neighborhood.

Marie58

I can relate to so much that many of you have said.

DH was diagnosed with EO 6 1/2 years ago, with symptoms for probably 2 years prior. The Dx was quick. PCP even used the word dementia after the MRI and before our  appointments with the neurologist and neuropsych he referred us to. That should have been a clue to me that DH was well on his way along this journey. But I was quite 'dementia illiterate' at the time. DH was 60 at Dx and had to retire within 6 months of that because he just couldn't do his job. I had no idea how much trouble he was having at work. He probably should have retired sooner. So yes, his EO progressed quickly. He was well into stage 7 when he started on Hospice 13 months ago. Now progression seems to be at a snail's pace. We're at the stage no one wants to be in, and he just keeps ticking along with only small steps down. So much for living a healthy, active life. Granted he's bedbound, has to be hand fed, physically moved to different positions, etc, but his vitals are always great. I don't think it will happen, but I fear it lasting for 20 years as some have experienced.

Josey, I'm glad things have calmed down for you, but you still have a lot on your plate. Blessings to you and your family.

My heart goes out to all of us.

Nowhere

I remember you and the other old timers here. I’ve been on this road 15 years. Three different log ins. I believe my husband and I are going to be in the 20 year club, too. We’ve just said a final goodbye to his memory care roommate. Thru believed they were each other’s (previous) spouse. More heartbreak as to die in memory care of cancer without supportive family is horrendous. She became my family. I moved into their room for a few days/nights. My own father passed a few weeks ago, too. Much to grieve.

dw743

I too have just come back to this forum after a two and half years off. I see lots of new people, and some older one I remember.

 My DW had her last year in a MC unit during the covid restrictions, and passed on April 2020. Up until covid, I was able to see her every day. Then she was off limits for visits, until her final 2 days. I was able to be with her she died. Four months later my home and farm was wiped off the map by wildfires in Oregon. Lost her urn, but was able to find it by digging in the ashes of the house. Urn had been damaged releasing some of her ashes with those of the house. That was the lowest point of my life.

Since that day, things started to heal slowly thank to friends and lots of people unknown to me. Farmers donated hay to replace some what was destroyed, churches had supplies and hand tools, etc. I was just one of many who lost everything.  40% of the home and structures around me where destroyed. Over the past two years a new barn was built and the new house was finished this year. 

I was able to find a wounderful friend from church and got married. 

It feels like a lifetime since the Alz first came into our lives. If not for this forum, and friends, family, and strangers I don,t know how I could have made it to this point. I have a sister in law in the ES stage, and will get her husband to come here for your help.

To those dealing or caring for family members with Alz, you have found a great site and people to help you. I hope to be able to assist this group as time goes on.