Overwhelmed(6)

PennyV

I can't even begin to describe the many things I feel in dealing with a spouse with dementia,/Alzheimer's or whatever the heck this is.

I feel too young for this to be my life now. I'm 64, physically active, still want to go and do things and still work full time.

Unfairness of it all.  He's 65 yrs. old now. It killed his career and self esteem at age 58.  His managers didn't know what they were dealing with so they treated it as performance issues and were often cruel in how they disciplined or terminated him.

I'm extremely private and don't want the chatter, the pity and ultimately, the lack of genuine action on the part of others that comes with sharing this with too many people. 

There is a  degree of shame to this....it's embarrassing when I hear of something "weird" that he does.  

I have lost my temper with him and hurt his feelings.  I then feel terrible and guilty afterwards.  He is the sweetest, kindest person in the world.  I am just grateful that he hasn't gotten combative and mean.....yet????

He has nowhere to go and nothing to do.  I work from home so he won't be too lonely. I'm too tired at the end of the day to entertain him.  On weekends I feel like a camp counselor.

I used to love my work.  Now, it seems so unimportant/overwhelming and I feel so distracted.

I want to quit my job and move but cannot give up the income and benefits. ALL responsibility is now on me; making a living, running the home, meal prep, finances, etc. I'm terrified about how this is going to play out.

The relationship we once had is forever changed.  There is so little conversation and most of it is generated from me.  I don't feel connected to him.

I am beyond lonely,  My children are in other states.  I only have a few close friends here.  I haven't connected with anyone who is my age, still working full time and is dealing with this.  If feel like most people are older and retired (I'm sure that's wrong but where are the other people like me???)

So sorry for the pity party and the rant.  This was my first post....maybe I'll get it out of my system.  Ha!

Ed1937

Penny, your "rant" is understandable. Welcome to the forum. People here understand as well as anyone what bothers you about this disease. And our members support each other in ways that you won't find unless you are talking to other caregivers.

Yes, you are young, and your life has changed. We have others here who are also young. In fact we have a member who is 50 years of age, and others that aren't much older. Stick around and you'll connect with others who are riding in the same leaky boat as you. I'm sorry.

Marie58

Penny, welcome to the forum. This is a great, supportive group and you can rant all you want. You will also learn a lot, can ask any questions you want, and can share your experiences to help others. There are quite a few younger couples here as Ed mentioned. I'm 63 and DH is 65. He was diagnosed with dementia (probably Alz) almost 6 years ago. I've learned more here than from any doctors, books, etc. Blessings to you and DH.

60 falcon

Hi Penny.  We're all sorry you guys are dealing with this, but glad you found us because we all understand what's happening, young and old alike.  In my opinion you won't find a better group of folks to vent with and learn from.

I was 50 and my wife was 55 when all this started for us.  That was seven yrs ago.  Nothing you are feeling is unusual. Try not to be too hard on yourself, this is all so hard and none of us is perfect.

I don't remember if I read it here or not, but somebody said it's like they are just hanging onto the end of a rope to see wherever the hell it drags them.  That's pretty much where I've been at lately.  This is a pretty open forum where almost everything we deal with is talked about freely.

PennyV

Hi Marie-

Thank you for your words.  It sounds like you guys are the same age as we are and have been dealing with this about the same amount of time.  I hope we can talk more.

DrinaJGB

Hello Penny-

I hear everything you are saying. My DH lost his career at 52. That was 12 years ago. We are still on the unknown road with the dire future. To even try to remember the man he was before has become a long-ago distant memory and seems to have been a thousand years ago. Everything we once were has been erased; I am responsible for every single thing on every single day year after year after year. Just like you. You are not alone in this club nobody wants to be a member of. Folks here actually get it.

dj

PennyV

Thank you so much.  Not sure how I make those connections but am hopeful.

PennyV

Thanks to all of you so much.

Lynne D

Welcome Penny!

My whole sh#@show began when my husband had a ruptured cerebral aneurysm at 57; I was 53. I worked until I was 59, went without income for a while, then retired. We were “lucky (?)” in that we purchased a cabin in a rural area that we owned outright, and we moved into it to conserve funds.

My sanity has been rehabilitating the dwelling and land. I am hand-weeding 2 acres, and it is therapeutic. I keep in touch with close friends and family through phone conversations, but am otherwise isolated.

You mentioned one of the things I miss the most: meaningful conversations.

I have an easier time than many on this forum, however incontinence and agitation are creeping in. Keep engaged here so you are not blindsided.

Jeff86

One more voice here, Penny, to say welcome and to reassure you that there are many others on the same road with you.

I am 64 years old and about to start my sixth year of caring for my DW, post dx.  I am working full time and feel the full weight of the burden of running all aspects of our lives.  We, too, do not have family nearby. 

Everything you say is, of course, valid.  The incredible loneliness, the loss of conversation, the trying of one’s patience, the apathy of a PWD…on and on.

 This is an extraordinary community of fellow travelers.  We do our best to lift up one another so we can sustain ourselves on this journey.  I am glad you have joined us. 

Stuck in the middle

74 is the same, with more aches and pains.  Sorry you are having to do this.

Paris20

Penny, here’s another welcome to the group that no one wants to belong to. We may come from different places, different walks of life, even different generations. What unites us and motivates us to support each other is that we care for a person with dementia. In my case it’s my husband, who was diagnosed with Alzheimer’s Disease in 2015.

I miss the annual trips to France my husband and I took. I miss visits to our kids and grandkids, going out to dinner, or just shopping. Most of all I miss my best friend, my intellectual partner, political soulmate, and fellow dog lover. It’s all gone. He’s here with me but there’s little left of who he was. 

Most of us have similar tales to tell, themes and variations. Some are just beginning. Others are nearing an end. We help each other, inform each other, and most importantly we support each other. There’s nothing you should be ashamed to discuss. There are no dumb questions. This is the best place to be during the worst part of our lives.

Buggsroo

Hi Penny,

I will chime in as well. I am 65 and it has been two years since crazy took over. My husband is twelve years older than me and I miss the hilarious musings, retorts and interesting chats we used to have. I work part time because I love what I do and am not willing to let my design skills dry up. 

I now do it all, cooking, cleaning, showering him, shaving him, paying bills, running the house etc. Sometimes I can’t even imagine how I got here. Keep checking in, this forum is a lifeline.

Trust me, went for an ultrasound today and it felt like a holiday, almost fell asleep on the hospital bed.

toolbeltexpert

Welcome Penny I will not say what so many others have already said so well. My DW will be 68 and I am 64. Like you I wanted to go and do, but for now my world is so much smaller. I miss being with folks. I had to take early retirement at 61. As Ed said we are all in the same leaky boat. Only thing about this forum friends can help bail.

Daughter of a Marine

Penny, your post came on a day I am feeling particularly alone and hopeless and I can strongly relate to what you're feeling.  My guy was diagnosed with "mild dementia" about 10 years ago when he was 64 and I was 62 and still working.  Since his extensive spinal surgery and 5 hours under anesthesia last May, he is significantly worse and it appears he's regressed to the next phase. He's now much more confused and forgetful - 3 days ago I found him setting up our manger scene on the front lawn, with no clue that we are now in February and just took those figures down about a month ago.  The level of sadness I felt was overwhelming.   I can't talk to our 4 kids about my loneliness or their dad's regression because it's too painful for them and there's nothing they can do.  I'm not interested in pity from friends and family so I'm on an island. I'm a retired Employee Relations Specialist and had planned to get a part time job after retirement since I feel I still have something to contribute (and we could use the income) but I can't leave him for that many hours. I spend my days looking for things he has misplaced, making sure he's eating, drinking, taking his meds, putting water in his CPAP machine, gas in the car and snowblower, car stickers are current, finances are seen to, dog has been let out and fed and things like taking down Halloween decorations he put out today.  This site has been enormously encouraging to me and I believe it will be for you too - We are not alone.  We are stronger than we would have believed.  Please keep coming back here, Penny - you will find support and understanding from others walking the same road.  Sending hugs, my friend.

JulieB46

Hi Penny,

I am 58 and working full time. I had to leave work the other day because he didn’t know where he was.  He was in our attached garage. I had a meeting this afternoon with a memory care facility . The residents seemed much more impaired than my DH. He is 66 and was a brilliant leader until 8 years ago.  He too, was pushed into retirement. I still need a solution. I left messages for 3 home companions today. I could retire, but I don’t think I’d be able to stand this being my only life from here on. I guess I’m just say, there are more and more of us in the same horrible, sad, boat. I have a feeling I’m going to be reading and posting on this site more and more. 

Crushed

Hi Penny

I'm a long way down this road but it all started when DW was about 57

That was 12 years ago

People who are much more eloquent than me have given you support and I send you the same hugs

We have been there and done that .. we are here for you  

PlentyQuiet

Welcome Penny,

I'm 50 and Dh is 61, we are in early stages. I'm not worn out yet, but I feel the weight of it all.

I really miss conversation and someone to share the mental load of day to day life. And someone to share the worry over older teens as they head out into the adult world. 

I have found it helpful to tell people what is going on with us. DH did nothing to have AD happen to him, and he has no control over what it is going to do to him. It is simply a really bad hand we've been dealt. There is no shame in having this happen to him, or to you because it happened to you too.

When people know about the AD there is less awkwardness in conversations and interactions. It allows DH to have a bit more dignity than if there were looks and whispers. He deficits are seen, but not remarked on so he feels better in public.

It has also led me to a few people that I can open up to. Some are people who I never thought would play that role for me. My kids find it a bit distressing, and being teens they are still a bit self involved (grief looks a bit different at 18 then it does at 50) so having others to talk with, and cry with, is so needed. 

M1

So many of us here Penny.  I'm 65, working part-time from home, which is a 150-acre farm.  My partner is 81 and stage 5, in her 8th year since symptoms developed.  I have two grown kids but don't see them much between covid and their own busy lives, and my partner has no family nearby, so we're pretty isolated too.   Few social contacts any more, between covid and the fact that interaction is very hard for her now.  This forum has been my salvation over the last 18 months, both for company that my partner can sadly no longer provide, and for brainstorming, venting, learning what to anticipate, practical tips that have really helped.  So you've come to a good place.

Kenzie56

Hi Penny,

After a wild week and lack of sleep, I read your post and thought perhaps I had written it in the middle of the night under another name!  Thank goodness I am 65 and my DH is 70 - that clue set me straight. 

I am also extremely private and in the beginning, I tried to cover for DH and did not tell neighbors or family members outside of our children. I am not comfortable telling people all the stories that take place in the home...they just wouldn't understand. I found the stress of keeping it quiet almost unbearable as his condition worsened. I finally got up the nerve to tell our neighbors and most family members DH diagnosis and what a relief! Almost all of them said they had guessed as much when his conversations no longer made sense. I was amazed at the supportive comments. Of course they said, "Let me know how I can help." and then never offer anything - but at least knowing that they are there and aware of his condition in case he were ever out alone, they would know to what to do. He does wear a medical ID with contact info on it. Fortunately, I am retired but since my retirement I was the caregiver to my MIL (who lived with us & had dementia) and when she was placed in MC, my DH was diagnosed. I get angry because I worked 30 years with dreams of our retirement...but instead of a cruise or two, I ended up in this darn* leaky boat.  Hang in there - you will find comfort here because this community "gets it". If venting help - go for it.  The honesty here helps to validate everything. This is a safe place.

CStrope

PennyV, as you can most likely tell from all of the responses you've gotten, we could make 1 big checklist of things we are feeling or worrying about, and most of us could just go through the list and put an X next to all the ones we agree with.  I know there would be a lot of X's being checked.

I'm 59, hubby with Alzheimer's is 67.  He was diagnosed about 16 months ago, but was already well into the disease, scoring just a 17 on the MMSE cognitive test.

It's a crappy world we've been thrown into, but just be assured that whatever it is you're feeling, most of us are right there with you.

Joydean

PennyV, as so many have stated you have come to the right place. Yes we are all at different ages, but Alzheimer’s doesn’t care about age. It takes dreams from us all, it takes career’s , and it takes our loved ones. Our children are scared, but put on a smile and pretend. Our doctors, well some care and others well they see dollar signs from pharmacy companies. So we come here, where we can get truth, support, and yes friendship that is honest. 

Stay strong for yourself and your love one. 

Bill_2001

 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.

DrinaJGB

For me the hardest thing is dealing with his indifference to everything. He is not the same kind, considerate person he was for our first 30 years of marriage. Now he takes no notice of any of my pain or problems deal with on a daily basis, much less anniversaries, birthdays, holidays, etc.

  For years and years he would buy me the most beautiful cards and I have kept every one. Now I get nothing at all, or perhaps an index card if I am lucky.

A therapist foolishly told me to take out all of the cards he has given me over the decades. It only broke my heart even more. People who are not in this situation are utterly clueless. Some of my former friends will call at times to vent their stupid and superficial problems on me---and never ask how DH is doing, and certainly not how I am doing.

  It all feels like a long. slow death for us both. Twelve years now-- and I do not know how much longer I can go on sometimes. What's the point? The lonliness is unbearable so much of the time.

LadyTexan

Welcome to the forum Penny.

DH and I are on the younger side. He is 58 and I am 57. He was officially diagnosed with Early Onset Alzheimer's in February 2019. Symptoms became noticeable to me in 2016.

This forum has been a true lifesaver for me. The caregiver heroes here have taught me more than I learned from our entire healthcare team combined. The caregiver heroes here have supported me during VERY challenging experiences. The caregiver heroes here have celebrated wins with me. 

I doubt I could navigate (or survive) this journey without the gracious folks on this forum.

John_inFlorida

Penny,

I understand how you feel, I'm 64 almost 65, ad have been caring for my DW for almost 9 years now, she's older than I am and suffered a stroke. Overwhelming feelings at time. I am also still physically active and try to walk every day before she gets up. It's so isolating , in our case her dementia is mild at least.  retired early and am a  little sorry that I did, but we had so many doctors appointments in the beginning.

Now we are stuck at home most of the time. She seems content to sit and watch a lot of TV but its driving me stir crazy.

I think its the same here for most of the others, we take over all responsibility for everything. and very little meaningful conversation.

I've also wondered where are other like me , I don't feel that anyone not going through this would understan

jmlarue

Dear, dear Penny - your post touched a nerve with just about everyone here, which should tell you all you need to know about our battle with dementia. It doesn't take long for us (as caregivers) to knowingly nod our heads in a collective "been there - done that" gesture. As much as I hate to admit it to myself and others, very few of us are going to come out the other side of this battle without deep scars. I equate it with the deadly battle to conquer a cancer diagnosis (that I've watched too many of my family and friends endure, to no good end). Prior to dementia, if asked, I would have judged myself to be a person of strong faith - an optimist - the person who would have the "Serenity Prayer" hanging on my wall to remind me that some things simply cannot be changed and I must learn to accept that. No more. After 6 years of this dementia madness, I've lost the will to push back against it and all the "thoughts and prayers" of family and friends bring no relief. I'm in survival mode now.

Each of us must find the escape hatch that works for us and our LO. Some will be able to stumble our way to the finish line with our LO still in our homes. I dare say, most of us will not. I, for one, intend to place my DH in an appropriate care facility just as soon as I can reasonably do so - cost be damned. Given your state of mind, I suspect that this may be your escape hatch, as well. If so, I encourage you to spend the money (and the effort) to get your financial affairs in order by consulting an Elder Law attorney right away. There is a great deal of planning that goes into protecting you from financial destitution and having no choice except to place your DH in a veritable rat-hole care situation due to Medicaid dependency. This will not ease your daily burden of caregiving, or the feelings of grief, or the feelings of isolation. But, it will provide you with a light at the end of this tunnel and a feeling that you still have some control over your future, instead of sheer hopelessness.

Sharon E

Hello to all, and thank you for the honest, sometimes gut wrenching stories.  Mine is this:  I am 69, my husband is 54.  We have been married for 31 years, and had a great life.  He did masonry, I was a registered nurse, and unit manager of all things, a dementia care unit.  About 5 or so years ago, I started noticing changes in my husband's behaviors and comprehension.  He worked with a ruler and level all his life.  He was let go from 3 mason positions.  He took a job with a temp agency who sent him to a factory.  He couldn't remember how to write 66 and5/8 inches.  He was frustrated and angry.  I was, also.  I honestly thought he was drinking or worse.  I moved out, and rented a house of my own.  Only then did I recognize the changes for what they were.  I moved back home, and became the caregiver of a man not yet 50, with dementia.  I feel all the frustration I read about on this post.  I get angry and lose my temper with him at times because I keep expecting him to "snap out of it".  He gets frustrated and angry, and becomes verbally hurtful.  I take my dogs out for a walk in the yard and cry my heart out.  He goes from sweet to psychotic in seconds sometimes.  Twice now, he has had episodes of delusions and didn't recognize me, and accused me of being here to rob him.  He was an avid hunter, owned a small gun shop, road harleys, 4 wheelers and snowmobiles.  I enjoyed doing all these things with him.  Now, we have harleys and 4 wheelers sitting in the garage.  He can't even find the bathroom in the house we built and have lived in for 23 years.  He is still continent, but I have to do all the hygiene.  He can feed himself, but I have to cut up his food.  We don't go anywhere because he is paranoid around people, and gets very agitated.  All my shopping is done online, at places that will either deliver or have curbside pickup.  I am angry, I am retired and my life is in this house, doing things for a man who is cold and uncaring, demanding and has no patience.  I am finding it hard to even have time to use the toilet myself, or get a shower.  Sleep is in 2-3 hour increments on a good night.  I still want to go do things with my sister, or friends.  My husband and I always had a great time together, but I also went shopping on Saturdays with my sister, or out to dinner on occasion with coworkers.  Now, my sister comes up on Saturday for dinner. My oldest son comes up once weekly to help do things I can't do like mowing the grass or small maintenance jobs around the house.  He lives an hour away with his wife, so it is difficult for him to be here when I need help during my husband's delusional outbursts.  

I am looking for a house closer to both my sons, and my sister, for support and just the comfort of knowing someone is close.  When we built our house, we had lots of friends who were here a lot.  Now, no one comes.  It is very lonely, with no one to talk to.  I can't talk to my husband anymore.  I have one friend who comes to visit on occasion, but lives an hour away and has a husband with MS.  I never thought I would have to move at my age.  I don't have any input from my husband, no help making decisions like moving, selling things we have gathered over the years.  I don't even know what half the stuff is, like bike parts.

Thank you for this group.  I ran the Alzheimer's support group at the facility where I worked.  It really hit me that there is a lot I don't know.  I was a certified dementia care provider, but I only saw the residents for 40 hours a week.  They were well advanced when they came to me.  It is shocking to realize how very different dementia looks at home versus my job.  I thought I knew a lot, but it turns out, I am getting an education now.  Baptized by fire as the saying goes.  I understand overwhelmed, angry, frustrated, exhausted, lonely, and feeling ashamed of feeling those things.

Sharon E

Your post is so spot on.  Eye opening and comforting to realize there are people out there who get it.  Thank you for writing it.

JoseyWales

Hi Penny - yet another person here who's on the younger side. Actually, I think I'm the youngest to chime in so far. DH was 51 when diagnosed over 6 years ago (and probably 11 years since  symptoms first appeared.)  I was 48 back then, 54 now. But I think I've aged 20 years since diagnosis.  I'm still working full time, because DH quit working at 52 and I had no other choice.  We raised our son from age 11 with this. He didn't have a normal teenage life.

I know no one in real life who struggles with this. I find it's good to be able to connect here. 

Lynne D

Bill-2001 thanks for the brutally honest rundown. I agree 100% with what you wrote. I only wish we could be more hopeful.