You guys said to just let it all out. Please I know this is going to be a whine, and please if you are going to deride or chew me out, please keep it where I can't see it. I am on thin ice.
I was SO HAPPY to find this site, and the advice to not hope for instant comfort was right on.
Had a good day and a half taking all the wonderful advice. Feel like I am slowly accepting that he is "just not there" anymore, that it is like having a wraith and a shadow.
Trying so hard to be patient and loving, after all he has always been a kind man. SO I AM THE A-Hole here, not him.
I don't know if I can do it, but I have to!! There is no one to help, we moved to this island 6 years ago to afford a home, but also to gt away from his prejudiced holy roller sisters. They think he has a demon spirit, not AD. No comfort there, just bitch at me and did not even tell me they were sorry about my sister dying.
I won't get into detail about the derailed day, just the usual you all know about, spilled coffee all over my just cleaned cars seats, (he forgot), animal poo left on the stairs for me to step in, (he once again poured cat food on the stairs for all the creatures to come, they do have a dish elsewhere), oh blah blah blah. Infected sores on his feet he did not know about.
Dumb me, thinking we would have a good day, scrubbed the house this morning , pruned plants, and told him how much I knew it was not his fault, and made him smile.
You all do not know me, but I have always been "strong", loving, independent, and alot of fun. (and yes, lousy too, but generally a bright spirit)
Oh I just don't know if I can do this, and he is only in stage 4, I don't know possibly stage 5. Diagnosed a year ago but symptoms were showing before.
ok...breathe....
I hate the constant tears, every darn day.
I am going to get some natural meds next time I go to town.
thank you. I know how much harder so many of you have it, and I just do not know how you do it.
ps oh man just read the incontinence thread and I really feel like a loser, we are not there yet. I did deal with it taking care of his mom.
oh deb I want to be strong like so many of you here, I don't want to be the wimpy whiner.
I was trying to choke down some lunch, and then thought, maybe part of it is the grief of not having my beloved sister Dianna to call, as she died just 2 and a half months ago. She would talk to me so non judgemental, and often get me to laugh.
She was so worried about ME before she died, and now look what a mess I am.
Please God give me the strength that these people have.
Coco i think what you are seeing in some of the posts is the ACQUIRED strength and patience we get during our process with caring for our spouses. i would bet every one here may agree they have grown and adapted while caregiving and understanding the need to see that it is what it is and nothing we do is going to change the outcome or the end that is coming for all our spouses. its a tough pill to swallow. if anyone would have told me 15yrs ago i 'd be the designated 'poop queen' i probably would have thrown up then and there. the unfortunate truth is the disease can last years and that allows us to grow and adapt to the situations that surface. each stage of this horrible disease brings its own unique problems. what bothered us in the beginning is long past and most of us have to deal in the moment and forget and take each day individually. dont dwell on the what ifs or whats ahead. it can become very overwhelming at times. and yes there is always someone who has it worse so i guess in the scheme of things that keeps us on course. you sound like a person who will adapt and try to feel your way thru the maze just like the rest of us. none of us were educated in this disease when first diagnosis came. its a process that comes at its own pace and we take it one day at a time. the good thing is here there are many before you and after you, and we share what we know and learn along the way. it helps to have a group who cares and understands the trauma and challenges this disease brings. i am sorry to hear of your loss -so many here have lost precious family members along the way as well. its double grief. you will do just fine. breathe...
Coco, many, some of us are not that strong - at least not ALL OF THE TIME. But we do try to be strong for others who are having a rough time of it. When one of us is down, the ones who can help will come through for you. Hang in there, friend. We also have a rope, with knots in it, and you can hang onto that - we'll keep pulling you up. Hugs and hugs.
Divvi's advice is right on. None of us started out with the ability to handle any of this. Every lesson we have learned has been through trial and error (lots of errors), emotional upheaval, oceans of tears, and so much frustration and stress that most of us are on some type of anti-depressant.
Coco--this is just my experience so far, but maybe it will help you. The worst time for me was before dx, when I didn't know why my husband's personality was changing. Then came MCI and the Early Stage, which were horrible, but at least I knew he had a brain disease and wasn't choosing to change. When he reached the middle stage, although he needed constant supervision and more help, it was easier on both of us than the prior stages had been. (This is not to say it was easy by any means--but easier by comparison.) So what I am trying to tell you is, that for me, the stress, heartbreak and suffering has decreased over time. Part of this is acceptance, part of it is seeing that I actually have been able to handle everything successfully (which I had doubts about when it all started). Divvi is right, it takes time to learn this job--just like any other new job one takes on. We all were a wreck in the beginning, that is normal under these circumstances. If you were always strong and independent, you have a head start to successfully deal with these challenges.
Hang in there Coco. You can do it. One day at a time, or one hour at a time and if need be one minute at a time. I have had days were it was a minute by minute day. And you know what. I am still here! Some how we make it. Some days just suck. No two ways around it. Some times it is our LO who is the problem and like today for me it is the car. Has to go into the shop again. I think my car has a crush on my mechanic. I first wanted to cry, then I thought well crap. It is always something. Looking back over the past year and a half I am shocked at how much I have done. I have had melt downs, fits and made many mistakes. But I keep moving forward. (((Hugs)))
Dear Coco, I found the stage that you're at right now the hardest, and many people I know have found that, too. It levels itself out. Sorry that any of us have to go through this. I saw our picture on your business website, and you look just fine. You'll make it. I think that the loss of your sister is a major trauma, and you'll have to be kind to yourself in your grief.
At the beginning of every stage I have had a meltdown and thought I'd never get any further....but here I am almost at stage 7 and hanging in there. I still have days where I am not at all sympathetic and feel sorry for myself but usually that is when I am tired. Make sure you get as much rest as you can. It is extremely important. ((((Hugs)))) Coco
blue, I also had a car week! We had to put out over $1000... and for once I did now whine so bad, it seemed pretty trivial compared to the rest. Not though ...i
I think he has already forgotten my freak out earlier, and it probably just goes over his head when I tell him, "I KNOW IT IS NOT YOUR FAULT>>IT IS JUST SO HARD!!!"
Marilyn, I think my husband is in the middle stage, which seemed to come on quickly, in about 6 months. Back then I would leave him home alone for extended periods, now just when I go to the Post office briefly. too many times stove left on and water running. (we have a water catchment system) Hopefully I am in a phase that will somewhat improve soon. He deserves proper care, I deserve to survive and even smile.
yeah, deserve, I guess there is no rule on that one.
And all of you so kind. Yes I can see it will take time, I am just a bit scared as I seem so unstable right now. Yeah, me, the one who always told people to be strong and it will get better...if often does not.
Coco, divvi is right on with her advice. I'm 3 years into my husband's FTD (frontotemporal dementia) journey. I had never even heard of it. We were told that my husband didn't have alzheimers and I thought good. Then to be told he had probable FTD...that was hard! The first year was just awful. I cried everyday for months and couldn't discuss his illness without getting choked up. I'm much more matter of fact about it now. I think I've walled up a lot of the emotions with regard to every change he has. I have noticed when I discuss his disease I get pretty business-like about it. Just the facts...
Yes, it has been that way for me too, Coco...try not to think too far ahead...that only brings on fear and anxiety. You must do your best to take one day...one hour at a time, and as you do this, you find you are coping better and better, and the acceptance will eventually come. This is not an easy task...there is crying, anger, frustrations involved...none of this is fair, but it is what it is, and you will get through it as we all will. Remember you have all of us to lean on, cry with, vent to....whatever you need; also remember that no one is better at this than anyone else; and lastly there are no two dementia sufferers that are alike...the rate of progression is different with each one.
Compared to any other grief in my life, like anyone of course we have all had some, and some so much worse than others..compared to any other grief for me, this one has an element of other worldliness about it, almost creepy, always sad, often scary.
I feel kind of out of my body, and somewhat out of control-yuck.
On the main page Joan has written about new people to the club, and how they have to learn, the description is of course right to the truth.
So I WILL take the advice to not think too far ahead, that part I think I can manage. What I am having trouble managing is my darn emotions, me, who was always so tough.
You all must have had this too, where you thought that you COULD NOT deal with it, and felt so helpless and hopeless.
In November I have a chance at a visitor to stay at our place and take care of it and the pets. I am thinking about flying dh home to his sisters for a few weeks, and taking a breather, something simple and peaceful. Even that scares me a bit, that it will just be as bad when I get back and maybe even harder to handle...whoops...looking ahead.
I want each and every one of you that posted, to know, that I cherish every word you have said. I see that some of you are quite young, (only 51) and oh how difficult your spouse is so young too.
Having help and support is something else I must seek, I don't know how but I will not give up. My husband is half Hawaiian and may qualify for some kind of assistance.
as we say here, Mahalo nui loa, thank you so much. I don't know how I coped without you.
Coco, I'm new here too and it sounds as tho my DH is about the same place as yours. Mine is past being aggressive now thankfully. When I first found this board I was just so relieved to know that my actions, reactions, and emotions were the norm. I had a meltdown and dragged myself and my pride to the doctor. I was totally ashamed of the way I was resenting my DH and snapping at him and having no patience at all. The people on here taught me that I can't fix it, he isn't to blame, and to quit demanding for him to act 'normal'. I can't change him but I can change my reactions and responses. Dr said I was totally exhausted and gave me a sleep aid and a 'chill pill'. I am grateful to have this board to come to and have learned so much here. Hang in there and keep reading. You can't do this alone and your cyber family will be your biggest support. Nothing you say hasn't been thought or said before. Hugs...... Jan
Coco - you are in the process of mourning two great losses: your sister and your marriage. It has been such a short time since loosing your sister, you are probably still grieving. On top of that you are accepting what is and what is no longer - your marriage, the present, and the future you had dreamed of.
My husband and I had a dream of spending the next 20+ years working and traveling around the US. I am still working but it is not traveling like we had planned. The future we had planned is no more - that requires mourning. I try not to think of that because it brings sadness and pain. I try to only live for today with only short term plans - plans that I know can change in a moment.
As for his sisters - hang up on them if they start in. Better yet = don't accept calls from them. With the stress of your husband's illness you are going to have to make choices. Some of these will be cutting off contact with people who bring you down or 'just don't get it'. You have to do what is best for you. Many of us have even had to cut off contact with children because they add stress we don't need or want.
I am fortunate in that my husband is not violent, aggressive or nasty. He does repeat all the time. He has a little calendar next to his chair that he uses to keep track of the date/day. Yesterday he asked me I don't how many times why Monday (today) was red. I kept telling him it is the federal Columbus Day ( should have told him it was Canada's Thanksgiving Day) . So glad the 10th is over.
Coco, I think that caregiving is a learned task for most. I was looking for a post about the steps that a caregiver goes thru on this journey, I could not find it. I think that list might help you see where you are on the journey and what things might lay ahead. I think you build up to the task. In the beginning you are overwelmed with all the issue that come up on your radar screen. These are all things that most people never have to think about nor have any experience in dealing with. I think the best advice is to take one day at a time, there are plenty of issues that will keep you busy. It is good to be prepared, but it is also a waste of energy to worry about something that may never happen. Given ones life experience, some may be better prepared to handle all the changes that will take place. Know that you are not alone on the journey and you have found a place of encouragement.
The steps moorsb is referrring to can be found in the blog I have reprinted today on the home page -www.thealzheimerspouse.com. I brought the original discussion to the top, which I hope everyone will add to.