After accidently completely uninstalling my website software, making it impossible for me to post anything on the home page, I am now fixed. Thank you Matt.
I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog - A Lifetime Lost. Being an Alzheimer Spouse is like being sentenced to a lifetime in Hell on earth.
I know we have our almost-ups, our downs, and our so-sos. I think you're having a down Joan. I share the feelings expressed in the post, but at the moment I just don't want to think about them.
Oh Joan, I know exactly how you feel. However I don’t even ask my DH because I KNOW that he doesn’t remember so many things. We have gone on 3 trips in the past month & a half & we have visited numerous relatives. He recognizes people, but he really doesn’t know who they are. The saddest part for me was when he kept calling our oldest son by our younger son’s name. Even though the older son fully understands his father’s disease, I know it hurt him to think that he didn’t remember him. And the things he does remember are all mixed up with other memories. I also am having a VERY difficult time dealing with this, so as you know, you are not alone.
Joan, I never go to places that you mention with your DH. I would never think of asking him about anything in the past or if there was anything special he remembers etc..... That keeps me from being hurt but then again I just know he doesn't remember and it would hurt him as well.
We celebrated our 50th anniversary in July with our children and grandchildren. They did a video with pictures of our wedding and other milestones of the last 50 years. DH asked me if that was him in one of our wedding pictures. He has lost so many memories. I knew it was bad, but did not realize how bad. I felt so bad, but now I just feel numb.
Joan you put it in the right words when you said"it is like a living hell on earth! I ask myself daily WHY US? WHY HIM? Never an answer in this disease just more questions and more saddness. What good are our memories when the one we love and made them with is slowly being taken from us and leaving only an empty shell. I look at my husband of 45 years and see a scared child,that I don't know how to make smile anymore,a scared child that looks at me for answers that I can not give, a scared child that asks why am I sick nd WHEN will I get better??? What do you say-but I love you ,everything will be ok. Lies and ugly truths are all we have facing us. Hugs to you Joan-thanks for giving me a place to say what I feel-even if others do not agree.
Joan- I can certainly understand how heartbroken you are, and that the memories of the past 34 years have been pretty much destroyed except in your mind.... In my case, Audrey never did lose any of her long term memories, and she could recall things that all of us had long forgotten...However, she forgot how to use a phone, how to eat with a fork, how to play movies on a dvd, how to talk, etc...yet strangely, she could remember events and people with absolute clarity... She would know the person or event, but sometimes could not say their name or name the place....but I just knew that her memory was intact....On the other hand, short term memory was very brief, and that in itself was sad...Yes we do lose the person one memory at a time, but it is the other losses that are often much sadder.. Who would expect someone to forget how to eat, how to urinate, or how to do simple things.... It is a sad disease no matter what. And the caregiver has to share those losses one at a time. Very heartbreaking.
When I decided to go back on the road, it was for enjoyment, not memories. He has already forgot much of what we did in Arizona last winter, but he enjoyed himself and so did I. We both wish we could afford to go back but can't, so will head to raining Western Washington. But we will enjoy it. I guess we learn to live for the moment - not for the future memories, especially for our spouse.
Phranque* My dh is going along the same course as your dw did.He can remember people and some long term-not as well short term.But he has forgotten how to LIVE-most days I have to show him how to eat,dress,go to the bathroom,how to sit on a chair,how to get into and out of bed,he can still talk but does it very little and usually has to be helped with words.It is a terrible hand we have be dealt,but as with you we will see it through.
Charlotte, that is so true...We do "learn to live for the moment, not for the future memories." I have come to realize that, too, with my DH. We had a lovely family vacation this past summer in Mass. at Salisbury Beach, and though he can't remember a lot of what we did, he does remember that he enjoyed it, and was happy to spend time with our children and granddaughter. My DH is at the same place as yours bak...he too has forgotten how to do the day to day living...so sad.
Your "memories lost" are the same as mine. It is as if dh and I have never been married. He remembers very little of the last 57 years. I am afraid to quiz him. Doesn't seem to remember one thing our 5 children did in all that time. Yes, it hurts dreadfully but when he looks at me, who on earth does he see? Certainly not someone unexplainably close who shared so much. I think I am just a familiar face and presence in his life. Someone who knows where his socks and pj's are kept. Someone who handles the money and the bills. In other words, an unpaid housekeeper who loves her dh dearly for what he was, seems to be and God knows what will be.
My DH doesn't remember anything about our past-those memories are left for me alone. He is still able to do all his ADLs with coaching but both his short-term and long term memories are gone. It is heartbreaking for me but I realized a while ago that I would be the keeper of the important moments of our lives. Joan, you're having a tough week- my heart goes out to you. Unlike Sid, Rich has not scored well on the MMSE-21 3 years ago, so once I accepted that he was that far along, I knew the important times in our lives would be gone soon after.
Every single night, while we are sitting in the den watching TV, he says to me - "Sweetie". I turn my head to look at him, knowing what is coming, and I say, "What?" He says, "I love you". I say, "I love you too." But I wonder, what about me does he love? It certainly can't be anything based upon what we meant to each other for the last 41 years. As I said in the blog, he doesn't remember much of that. His "I love you" now just saddens me, because I think it means he loves me for taking care of him. As a matter of fact, I know it does, because he often tells me that he is so lucky to have me; that I am such a good wife; that he appreciates how much I do for him and how well I take care of him. That's supposed to be a compliment, but it hurts. It reinforces the "caregiver" as opposed to the "lover/partner/wife" role that is now mine. And believe me, he forgets how much I do for him when ONE thing isn't done. Then he just whines and complains that he has to do everything for himself.
Joan, one thing I am absolutely sure of is that Sid knows you are here, in the present, for him. Everything else might be hard for him to retrieve, but not your presence, your touch and your steadfast support. It became more and more apparent to me as Eric declined.
Joan, we just have to be satisfied with the caregiver role and know they can't get along with us. Without the love we have to give and show, it would be just a job. This is selfless devotion. Treasure the words, "sweetie" and "I love you" because they might leave his vocabulary and then you will just have to assume. That's no fun.
OH Darn,we all all just "up the creek without a paddle" As I constantly tell Paul,eat your lunch-drink your water-sit down- get up-go pee-wipe your nose-please sit down for a few minutes-stay in bed-and on and on-I know he knows what my name is but I truley think he now just sees me as that person who has always taken care of him.When I leave the room he gets nervous-when I leave him at ADC he askd them"am I coming back". He says I love you when I put him to bed at night,but it is the I love you of a child ,not a husband of 45 years. I only hope his mind is not racing around as fast as mine does just to keep track of when,where,and what he is oing or should not be doing!!
I don't have a clue what DH remembers and what he doesn't since it changes daily. Yesterday he gave me an accurate account of his work at the Cleve. Clinic and how they started the "test tube" baby program. He worked in that department where they did the invitro fertilization. He said "I just wanted you to know how it all got started and I was part of it". He was right.
Then he jumped back to prior to when we married, and told me all about the work he did then. Again, right on.
Then he asked how long we had been married. Sometimes he doesn't recognize me in pictures with him, and I become "that other woman "who drives our car, cooks our meals, etc.
Keeps me agile jumping from year to year or decade to decade. It is so sad, so lonely and I know it's frustrating for him - he tells me so.
What do you say, Joan your right, Emily your right, Vicki your right, bak your right, and so on and so on.....you are all right. The question becomes when we have the moment Joan is having, what can we say to her or do to make it better for us or her. Or maybe it doesn't or can't be made better. Acceptance and battling exhaustion. We are all up that creek and some paddles have more holes in them then we would like. The only thing I tell myself stay in the moment, find the joy in the smile that Hubby can have and accept I can't make it better when he's in a place I can't reach. Joan I think going through this year with your surgery, it's recovery and this daily changing evil disease your weary. Dealing with a colonoscopy yesterday for myself and caring for Hubby stretch my last nerve you have had weeks and weeks of all of it. I wish anything we could say could give you comfort but know we all care for you and understand.
I don't know whether or not my wife has any memory of past events, since she cannot express herself in any meaningful way. She will often chatter away about people and events, but I can't figure out what she is talking about. A couple of days ago our daughter, son-in-law, and son were here for dinner. While we were having "happy hour", my wife got up (she was sitting beside me) and walked over to our son and started rubbing his shoulders. This is the first time I have seen her do this to him, although she often does it to me. Our daughter and I wondered if she was seeing our son as a younger version of me. We have to take these small things to help keep us sane.
Here I face the same things most here do. My DH cannot recall our trip to England and Scotland in 2002 doe our 25th Anniversary, he cannot recall our trip to Iceland with all the kids and some of the grandkids in 2008, can't recall the boat trip to Vigor to see the Puffins and other sea birds, and he doesn't even recall being honored last year in Nov being inducted into the John Muir Hall of Fame ( check that out on google, there are some heavy hitters, well known famous people listed). He does not recall his trip to NM about 4 years ago to Billy the Kid territory nor meeting two of the Kid's grand children and he talked non stop about that. He still knows people. Not only can we not talk about our memories and our great adventures, we can't even talk about what he sees on a TV movie. Can't talk about anything in the news either. And like so many here he will say he loves me..and he will also say he is so glad I am looking out for and after him, ( it helps that he knows and appreciates it that I do all the things for him that I do), he will worry out loud about what he will do if I go away on a trip, who will put his meds out etc. What he does recall is that this is the first house we own 100% no mortgage!!! all ours...that he remembers and will comment on often. I could sit in my recliner all day, not say a word and I don't think he would notice...there is no conversation of meaning, no plans for something to do together...and I almost hate looking at all my nice dishes and silver etc...brings back memories of the happier times when we entertained a lot and not only do we not do that anymore, most of the people in our group are moved away or dead now..( they were all more than 2 0 years older than I am) It is pretty hard to entertain at all when there is all the memory loss. Just don't have the energy to put it all together with everything else that falls on me now..It is just plain lonesome and there is no getting around that.
Nothing anyone can say will make any of us feel better about what is happening to our spouses ... to our relationship with our spouses ... to our own lives. This subject is just too sad to visit. As with so many aspects of dealing with our AD spouses, the only way I can deal with this subject is to acknowledge that "it is what it is" ... and then quickly move on before being consumed by the sadness.
So true, Allan. I've been trying to think of something uplifting to pass along to Joan, but anything I come up with sounds trite even to me. This is the cruelest of diseases :(
You know, I get more support and validation here from all of you than in my face-face support group. Most everyone here seems to understand exactly what I am feeling and most feel the same, which helps me tremendously. Some of you feel differently, and your experiences and opinions also help me see a different perspective.
Mimi,
When you write, it often sounds like our husbands are twins. AD affects each person differently, as we know, but your experiences seem to mirror mine. Including the diabetes issues.
As I said in the blog, I was befuddled by this latest massive memory loss. Now I think I'm just numb.
Last night just for the heck of it I asked DH " where did we get married?" and he said Yuma and named the Judge..we did that before he went overseas again so we could be located together..the Marine Corps does not put a couple together at the same duty station based on a ring and a date..you need the license in your records.So he got that right....last night. Right now, he has had his morning meds, his breakfast and is now snoozing at the kitchen table..not a deep sleep but there is more of the snoozing going on and when he goes to bed at 8 or so, he is not asleep by 11 when I turn in.... There are too many twists and turns with this disease..
I am thinking of putting a little insert with the Christmas cards this year that goes to folks who may be likely to come out west and want to visit...something to the effect that if you are planning any kind of visit, be it for a few days or out to lunch you must call me as DH will NOT remember to pass the message along....
Lynn is stage 7, that he can talk at all is a gift. That he is still able to say "I love you" is a treasure. I think the later you are in this journey, the more loss you have suffered, and that makes one appreciate what is left all the more. It isn't that it isn't still killing me to think on all we have lost.. it is more that I just cant dwell on it anymore. Instead I cherish what is left. I know his "I love you" today does not mean what it once did. But, in many ways, it means even more....
Memories are stored in the brain... love in the heart. I love Lynn just as much as I always did, if not more, just differently. Through it all, the love remains ♥
Nikki, Thank you for posting the thoughts that you do. It is so comforting to know that you have been through the horrors that some of us are going through right now & you can still LOVE. Sometimes I wonder if I will be able to LOVE in the later stages, but then I read your words & I know it is possible. Don’t get me wrong, I still LOVE, but some days I also HATE! Some days I don’t even want the memories to crawl into my mind because it hurts too much. But you are right, the LOVE will remain.
Nikki, I so agree with Elaine and feel the same for my Rick. Many times the things that are written here are so profound and touch in away that rings so true to my heart and I am sure many others. Those words Nikki were such a comfort....it place a smile in my soul today......thanks
Elaine and Terry, I am so glad you found some comfort from my post. I often just come and visit here but don't write much any more. I have been through where most of you are now... It is "normal" to experience the feelings you are while still fighting the battle. It is our self preservation I think, we try to protect what is left of our broken hearts. The Alzheimer's devil took up residence inside "my Lynn" for far, far too long. I had these same feelings, and many more....
Without fail, I always thought the stage we were in right then was the hardest yet. Stage 7 is so difficult, but for different reasons. It isn't that it gets "easier" in the late stages... it still has the power to bring me to my knees. But I think the difference in the later stages, for me at least, is that there is just nothing left to "fight" over.... nothing left to feed that anger, because our loved ones are basically helpless. They are unable to do the things that use to annoy the hell out of us. They don't say the hateful things they use to, some can't even talk at all. They need complete and total care. The heart softens.... the wounds heal..... and the love returns.
It may not be that way for everyone. I know many say they don't feel the same love. I think the key is to realize that love is gone.. but it doesn't mean all love is gone. It was hard work to open my heart again after trying to protect it for so long. But it was soooo worth it! The love came flooding back in gentle waves that soothed my shattered soul. I can honestly say that I love Lynn with all my heart. I love him as my husband, the one he use to be, and the one he has become.
He loves me still.... he is able to express that love to this day. And that... well, that is just a miracle I don't plan on wasting!! ♥
Hold on.... we will all survive this together. ((hugs))
Oh my gosh I don't even know where to begin to thank you for this site. I've been going crazy for 2 years because no one understands what I'm going through. Finally I can come here and read your blogs and know I'm not alone. I just arrived here so I need to read and catch up and then will begin to share. I need so much advice and I know I have finally found the place. Thank you.
Hi & Welcome Mary! I am so sorry for your need to join our family, however, I am so glad you found us. You are never alone here. You will find the most caring friends in the world here. Also, lots of good advice for fellow caregivers.
Thank you for the welcome Kadee and deb. I promise I will tell you. I just need to let it all sink in that there is actually a place who understands. I am tearful right now honestly. I didn't think it was possible. I'm reading blogs and it's my life as I know it. I didn't think anyone understood. I will be back. I can't wait to come back. But right now it's time for hubby's meds and locking up the house.
welcome to you mary. its such a blessing to find friends who know exactly what we go thru as spouses dealing with this dreadful disease. hopefully you will find lots of good info and some wellfounded hands on advice and tips from those in the trenches along with you. divvi
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD- now called YOUNG onset). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section, at the top of the left side of the home page. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Welcome to the family Mary ♥ It is an amazing feeling when you finally find people who truly know what you are going through isn't it! I look forward to hearing more of your story
Oh ...I read each and every one, oh how sad how true and how much like my life. I have NO ONE here to help me, I am MAD, I am heartbroken, I am sad all of it.
One of you mentioned how their loved one is in stage 7., and how now there is nothing to feed their anger. This just makes me sob, we are in the beginning, and my anger is consuming.
I will go to bed tonight knowing that I am truly not alone, that even though my own friends and family don't seem to give a hoot, their are strangers who do. And they do, because they KNOW/
God bless each and every one of you here, and thank you for warming my heart.
Coco, that was me who said that. I am sorry I made you sob :( It seems like a life time ago now, but I once also felt consumed in the anger and the grief. The grief I still struggle with, it is just different now... the anger, well I just let that go. I was angry at the disease, and in truth I was angry at my husband, even though I knew none of this was his fault. I was angry for all we had lost, and all I knew we were going to lose. Looking back I see I needed that anger, it helped me cope. I used it as fuel to help me through.
We have been through all the earlier stages and now, well now there is just quiet acceptance. I fought a good fight, I gave all I had.... and then some. Now it is time to stop fighting and to cherish the rest of the time we have together.
Many of our members here have completed their journey, their loved ones are in the hands of God. You will know them because they have a * after their name. They are proof that we will survive..... together we make it more bearable ((hugs)) ♥