The minute the denial game was over, it felt like a bomb exploded in my life shattering all the pieces of life as I knew it. I feel like Humpty Dumpty because all the king's horses and all the king's men can't put my life back together again!
The strain of trying to live life in this new reality is wearing me out. There are so many questions left unanswered. There are so many dreams never to be fulfilled. Above all, the sadness and heartbreak I feel as a constant companion. My head swirls with new worries each day.
I find myself projecting into the future and fearing what it will be like. How will I be able to cope? How can I provide the best care for him?
HOW WILL I PUT THESE SHATTERED PIECES BACK INTO A LIFE I CAN LIVE? This is how I am feeling.
come to this site often,ask anything,there will be lots of help available,its not going to be easy but everyone here either has been down the road your traveling or are traveling it now
I agree with ol don Lorrie. Come to this site often and ask for help and read what others have done. I remember being ovewhelmed when Kathryn was first diagnosed. It seemed like so much to have to deal with. It seemed an impossible taske but it isn't. It is like learning to walk. Just give it your best and take one step at a time and beofre you know it you will have dealt with it far better than you thought you could.
You are much stronger then you know right now. You will find that you can tolerate many things you never even gave a thought to. I do think it is very important to learn how to deal with a spouse with AD from those that have had years of experience. One of the most difficult things to learn is you cannot reason with them and after you learn that everything seems to fall in place. You cannot expect for them to respond or do things like they use to...it will be a new life for you. Hugs...because I know you need hugs and will continue to need hugs.
Yes, all the king's men and all the doctors on earth cannot give you back your life as you've known it. You don't yet know what will be, but you will be put back together, in a different form, but survive you will, just as we all have done. Let us share this trauma, we understand and will give you strength.
lorrie, you will gain insight daily on your own thru trial and experiences. it comes gradually and over time. its overwhelming at first but with time you will see you will be able to adjust and cope better than you are thinking. looking into the unknown is scary and unpredicatable, so its best to stay keyed to the now and present. tackle the today and dont despair over the what will come down the road. they may never come. we see here, some have much easier adjustments than others. and as do our spouses. dont try to project the future, it will come at its own pace. live here and now if you can. the only future we should be able to see right now is for ourselves and the 'after' and how to survive and get to that point. divvi
It's a process. It doesn't happen all at once. My journey is docmented in my blogs from the first day I launched this website in 2007, until now. In the beginning, all I wanted was for someone to show me how to put my husband and our life back the way it was. I fought that fight for at least 4 years until it wore me down and I learned how to adjust somewhat to life as Alzheimer's makes it.
Besides coming here to read, learn, ask advice, and just vent, I would suggest going to the home page - www.thealzheimerspouse.com, clicking on "Previous Blogs" on the left side and start reading. If you start at the beginning, you will be able to relate to all I have gone through, and it may help you cope. Obviously, you won't be able to read ALL of the blogs, but the titles and explanations are listed, so read the ones that you know will be of interest to you. Reading them in order will show you the progression of emotions I have gone through and the coping skills I have learned (as best as I could - not always successfully).
There is no doubt about it - as the website logo states - "Our Issues are Unique", and only other Alzheimer spouses can truly understand and relate to what we are experiencing.
I need the help you are sharing beyond words. I will start from the beginning in order and I will want to read all blogs. I have read many but not in order.
Some days for no reason I feel the pain worse than others. This is one of those days and ironically today my husband had a good day.. Makes no sense why I feel worse. But nothing makes sense anymore.
What really does help is all your comments and suggestions everyone !! Hugs
Lorrie- you are stronger than you think. You will make it! I never would have believed that I could do the things I did. It is true just one day at a time and come to this place. Someone here can relate to anything you experience and will help you. (((hugs)))
Lorrie, another thing you will finally realize after being on this site for a while is that it contains a vast array of experiences. Some of them you will experience, but not all of them. The problem is, you don't get to pick and choose which ones. Compared to some of the spouses here my husband was a real pussycat--he needed a help with everything but was a gentle spirit. In fact, he had always been a leader and people commented on how gentle he had become. What is worrying you now is probably all those unknowns, but what happens, happens.
Lorrie, you received a lot of good advice like I knew you would! My contribution to the team is to only think ONE DAY AT A TIME!!! I can't emphasis this enough, it has saved me through the years of going through this horrible life. Two days ago someone who knows me just a little bit came up to me and told me that I am handling things a lot better than I use to and she gave me a couple of examples of why she said that and I told her thank you but I also said that I couldn't see what she sees I guess because I deal with this 24/7. What I am saying is...you do go through it! Everything that you learn here and all the support that everyone here gives you will eventually pay off. Unfortunately this horrible life doesn't get any better. I know...really encouraging but true.
I don't know how you will get your life back anymore than I know how I will get my life back. No one ever seems to post, "whew, I got through that and now I am my old (previous) self".
I think I read in an earlier post from you that you live on the water? Is that of any relief?
Denial is my very good friend. Crawling my way out of it is a task that I have known for many months now.
I so understand how you feel, I've felt that way so many times. I, too, felt like a bomb had been dropped in the middle of our lives. I guess the two things that help me the most are having NO expectations anymore from my husband for anything. Not for affection, household help, emergency help, gifts, remembering anniversaries or holidays...nothing. The lower, lower, lower my expectations are, the less disappointed, shocked, stabbed through the heart and resentful I feel.
The other thing I do, and I have no idea if it's a good thing, is that I try not to think about how Jim used to be and what I miss about him and I try not to think too much about the inevitable future. When my mind bends that way, I bend it back to right now. Right now we have enough to eat, a place to live, medical care, a little money, and no rocks falling from the sky on our heads. I'm kicking a lot down the road, I know, but maybe I'll be able to handle it better when I finally catch up to it all. Today is hard enough; I'll handle tomorrow tomorrow :)
I did make sure to handle all the stuff you're supposed to handle for the future, the legal and financial stuff. It's the emotional stuff that is relentless and is the most difficult to manage for me. Thank you for starting this thread and sharing your feelings. It helps me to know I'm not alone.
Lorrie--So many good responses on this thread. Abby*, I'm here to tell you that so far, I am getting through this and I am BETTER than my old (previous) self. Steve's AD pushed me to "come out of my shell" and I am more outgoing and comfortable in settings I never would have dreamed of. My friends have noticed this and my best friend marveled that I have more girlfriends now than I ever did. I know I'm more compassionate and I even handle my own physical pain better. If I'm having an uncomfortable procedure (for example, involving shots) I say to myself--this isn't so bad after wrestling with AD for all these years. The experience has made me appreciate things in life that I always took for granted (i.e. free time, being able to travel, etc.). And finally, I was forced to become much more self-sufficient. Even if I remarry someday, I will never let myself become dependent again. Steve has been teetering on the brink of the dreaded Stage 7 for a while now; handling that may change my outlook, but I can't believe it will be as bad as the early years. Anyone who reads this, please know that I'm not bragging, but trying to give hope for their future to those who are struggling with AD caregiving. For anyone who is interested, there are some old threads that outline similar thoughts by others (I just can't remember what they were called.)
On bad days I often had to go from one day at a time, to one hour at a time, to one minute at a time. Some days are just like that. Also I found early on that good days upset me more than a bad day. I think that the reminder of what was is brought to the forefront again.
And as time has gone by it has gotten easier for me in some ways, I am way more flexible, I use to be a control freak. Not so much now. LOL
marilyninMD, I also found that I am much stronger than I thought. I went from my parents home to married to divorced back to parents to married again. I thought I needed someone to look after me. I now know that I can take care of myself and am stronger than I ever thought.
I morn what once was and what could of been, and when this is all over I will have a very good cry. But we will survive. Many hugs to all.
Lorrie, we all have a few things in common and one of them is that we all have found out that we are stronger than we thought we were. You will feel shattered for a long time, but than you will start to glue your little piece of heaven back together, just to get thru the current situation. Lorrie, lean on your friends and family, do not hide anything from them, that way they will have some understanding of what is going on with you. We are all in this together and we are here for you.
Lorrie - thank you for starting this thread. My feelings at this stage echo yours. When I think about the future, my mind just dissolves. And then, as we've discussed, I have to get in the shower to cry. I'm very, very clean these days.
I have a friend who's been in AA for over 30 years. She gave me an AA mantra: "Stay in the day." I repeat this over and over until I can let go of the bleak future and think of something productive or fun to do.
Another thing that's helped me is to make a list of all the challenges I've had in my life - things I couldn't imagine I could survive. At our age, we all have some of these I think. I run through this list in my mind, reminding myself that I'm resourceful and resilient.
Button, your comment about being very, very clean these days - that was funny! Humor can help so much, although some days it's almost impossible to see any humor in anything! I know not everyone has a "faith" connection, but faith & humor can see me through a lot. Still I struggle with unkind thoughts, negative feelings. I've come here to vent & find help from those walking this path. As someone said the song"One day at a time, Sweet Jesus' is repeated in my head a LOT, and I also like the AA mantra "Stay in the day" - thank you.
Soo many of us feeling the pain of a shattered life. Such honesty and willingness to share so that we may help each other touches me. I take all of your thoughts and suggestions to heart. They give me strength. Thank you all
Lorrie, I live in a very small town in Texas. This site was my only lifeline for years. It will help you through many rough spots...and is open 24/7 so do not be shy about using it. Wonderful people here.
I lost my dh on Feb 1st after 13 years with Alzheimer's. Tonight, I added my asterick to my name and it made me cry again. But..I am tough, I have lived through the worst now.
Lorrie - when I first started reading here, I could not leave. But, I also became overwhelmed with what could happen in the future. In time, my fears calmed to the reality of now. We become family and the last week with the deaths that have happened brings us back to reality of our futures.
Sometimes you may have to take a couple days off from here too to let it soak in and level out. Do not be afraid to do that.
I think as others have said, we try to live in the day and not think of the future, what we have lost or what will never be. Do we ever go there? You bet we do, but we learn not to dwell there cause that causes too much pain.
You do however have to plan for the future -financial,etc. I tried to explain it to someone that even though the future can't be planned I still have to plan for financially; what will I do when he needs help with daily care like shower and toileting? That can't happen in our RV, so what do I do then?
Yes live in the present but plan for the future where it pertains to their care.
Lorrie, it is so important to realize each and every person will travel a different path, but with this illness, it is such a tiresome and sad road. All of the posts have so much support and advise that will be a cornerstone for you to lean on. This is a perfect place to log on to, and lean on. Keep reading, and accepting the thoughtfullness of everyone who offers their experience and caring thoughts.
Lori*, it was so good to see you posting again. We shared the day of Dec. 8, and more. I wish you all the best, and hope you are OK. My thoughts are with you more than you think.
Thank you for inquiring, Janny. I am doing far better than I had ever anticipated. After four years on this forum, paying attention to the experiences everyone else has, you form certain expectations of what the final experience will be like. And my experience was entirely different. So read, learn, pay attention, but expect the unexpected.