Long gone are the days of agitation over the constant repeating themselves and the quirks that just drive you crazy! The driving issue hasn’t been an issue in too many years for me to count. Incontinency is a fond memory. I stopped focusing on what he can’t do long long ago.
I feel misunderstood, disconnected to the world. Even here, I have often felt an outcast. I have ALWAYS felt the love and support!! But, I have felt on occasion that no one understands . I am not in denial, it is far too late for that to even be an option. But what I am, is someone who wants “this hell” to continue for as long as possible. As long as Lynn isn’t suffering.
I don’t see anyone else saying that.
Most want this journey over so they can put the hell behind them and move on with their lives. Yet all I want is to hold on to what is left of Lynn for as long as I possibly can. I still love him too much ….. I can’t imagine a life without him in it….
Even though my husband has been “gone” for years, there IS still a part of that Lynn still here. I see it in his eyes from time to time. I can feel it at times, and I know it, because he is still able to tell me he loves me. Some days it is very difficult for him, but he always manages to say I love you! HOW DO YOU LET THAT GO? I can’t…..
Lynn is now on his second treatment for pneumonia. I wanted to come here to talk about my fears, but I wasn’t sure if anyone would understand. I have heard so many people say they wouldn’t treat….. And the doctor asked if I was sure I wanted to treat him. Of course I do! It isn’t invasive, it’s a pill!! I would not put him through anything invasive, like surgery for instance. But I would certainly give him an antibiotic! I guess I am feeling frustrated…..
Yes he has Alzheimer’s, and yes it is fatal… but where is the compassion? When did Lynn stop being a human worthy of treatment? No he isn’t who he once was but he is still a person who is greatly loved! He isn’t suffering, he is peaceful, content and he is happy in his own little world. What is so wrong with waiting for God to decide it is Lynn’s time?
This is not what I want, this is not what I dreamed of for our future. But, it IS better than not having him here at all.
Nikki, I'm not so far on the journey; so I can't answer your questions (or mine about what I'll do or how I'll feel in the future) and certainly can't judge your situation, but I can send cyber hugs {{{{hugs}}}}
Nikki-- Our paths with Alz or VaD, FTD,EOAD, whatever, diverge, and so we experience many of the same things, And some that differ. As you said, you are long past the agitation, repitition, and driving issues, among others. Your Lynn is still here and you can still connect with him occasionally. I believe the damage that happens with these diseases breaks the connects between the brain and the body and the brain and the outside world, not destroying the "self" but entrapping it. You are blessed that Lynn still can occasionally find his way through the pathways to connect with you. Few of us are so blessed.
Many of us are caring for spouses whose connections are being damaged in ways that damage the operation of the body and mind such that their survival is slowly compromised. They lose all connections mentally and emnotionally (slowly) but also they lose bodily functions, often in harmful, painful ways. They lose themselves. For them, the end is not peaceful.
As Caregivers to our Spouses, we have to find our way to the right treatmemnts and decisions for our spouses each as they are. Every one of them is worthy of treatment to meet their needs, but none deserve to be treated in ways that prolong their suffering. Your Lynn is not suffering pain, starvation, etc. As you said, a pill to fight the pneumonia.
What it boils down to, is doing our best to care for them, respecting their wishes regarding end of life issues, and not inflicting our need to hold onto them beyond their endurance.
Your situation is unique. You still have him here and still have that connection. I'm sure you know the day will come when Lynn will have to go, and you will have to accept that. That time is not yet here. Yours is truly a LONG GOOD BYE. Others of us will not have that.
Stay with us, Nikki. You have shared much with us, and still have more to share. I am sure, until a cure is found, there will be more of us facing the ending of our journeys and some will look to your words when the journey goes long.
We all must just do the absolute best we can, and trust it will be good enough.
carosi, you said it so beautifully.Much better than the Post I typed that got lost in cyberspace. Nikki, you have a lot to share with us and we care how you feel. We are all on our own path in this journey and hopefully no one will judge the decisions we might make. ♥ U
Zibby, thank you for the hugs, was in need of them ♥
♥ you too Bama
Carosi, you gave me a lot to think about…… “I believe the damage that happens with these diseases breaks the connects between the brain and the body and the brain and the outside world, not destroying the "self" but entrapping it.”
You told me this once before, it helped me a great deal then, and to this day I still hold those thoughts in my heart. On days when the vacant stare takes over Lynn, instead of leaving the room to cry so he didn’t see me like I use to, I try to find a way to connect to him. Softly spoken words of love, a caress to the arm, a kiss on the cheek, a tender stroke to his face to try to get his attention. Always smiles, he loves it when I smile at him!! and 9 times out of 10 he smiles back.
It takes a lot more to get his attention. And some days it takes a lot of effort to get through to him… but always in time, he does respond. Every day we watch TV together, we hold hands, I feed him lunch, take him for a walk. I carry on one way conversations with him, make funny faces, and sing songs I know he use to like. He smiles a lot ♥
He doesn’t let anyone else kiss him, he turns his face away from them. But when he sees me he puckers up for his kisses. I tell him throughout the visit that I love him, most of the time he says I love you too. On good days he will say I love you too honey. On great days he will say I love you more! On gold star days he tells me he loves me first.
Alzheimer’s has not taken his love for me. One day he may not be able to communicate it at all…. But it hasn’t happened yet, and that in and of itself I consider a miracle! Even if the time comes when he can’t say it, I will know…
My frustration isn’t just this one case of pneumonia. It is every single issue Lynn has ever had. From not eating when he was first placed, to his pulmonary embolisms last year, to his choking on their food…etc etc. The whole medical field (at least here) seems to think that late stage Alzheimer’s means no treatment. My sister was shocked when she was at the hospital with me for the embolism, she said, oh my God! Are they saying what I think they are saying? She was stunned!! As was I……. I do not understand where this thinking is coming from?
If they but looked at him as an individual.. They would see what I see. But they don’t, he is a disease to them and nothing more. It makes me sad and angry at the same time. I always have Lynn’s best interest in my heart, and I feel I should not have to justify wanting to treat him. I should not be put in that position, it just isn’t fair.
If Lynn were suffering, we would be having a completely different conversation. As much as I love him, I DO love him enough to not let him suffer. He suffered great mental anguish when he knew what was happening to him. But now he is quite happy in his own little world. It IS hard for me of course, but at the same time, I feel so very blessed to still have some of him. ♥
Thank you for letting me vent, has been a looooong time coming! lol
Nikki, I have some of the same feelings you do. Even when I am so distraught and fed up with what this disease is doing to our family, I wish this would end, but I also don't want my dh to be gone. The feelings are so mixed. I think we must all take one step at a time and do what we know our loved ones want us to do. I agree with help just being a pill away. Like many others we have given pills that we knew would not work for long if they worked at all to help prolong this disease in hopes our loved one would last longer. So in my mind why not a pill that we know would help them feel better on their journey. I understand what you are feeling and saying. Please know we are all on the same journey and we may not always agree with what others are doing, but how do we know what is best for another loved one when we are not even sure about what we are doing for our loved one? We have to pray and lift up each other and then do the absolute best we can do. Stay with us and help us to get thru this as we will do you. God will bless whatever decision you make and know it comes from the love you have for your dh. We will honor it also. We are all in this together and understand.......... love hurts......but it is also so rewarding...... Hang in there...... Love in Christ,
But, first off, I think everyone who is dealing with AD Spouses and feels that his/her version is "different" and therefore doesn't belong should just relax. They're all different. It's just that we tend to commiserate on the similarities. It's a big part of what support is about. And, besides, I think you just roused a few like-minded fellow travelers.
When I read about you wanting to hold on to every last glimmer of your husband, I find it very interesting. Yes, this is a departure from my (and many other reactions.) I really do THINK I want this to be over and behind me.
But the difference, in my non-professional judgment, isn't that we're having vastly different experiences, it's just that our personalities cause us to react to the same stressors in fairly divergent ways. For some reason, your nature allows you to see and take comfort in the remaining sparks of his person that are evident in your husband. I see those in mine, but--also for some reason--I am inordinately pained by the aspects that have been lost. So much so that I don't seem to be able to feel an urge to nurture that which remains. I DO it, but I don't FEEL like doing it. I do it with what I call a sort of "cantilevered" love...iow, I am going through the motions, but if I open myself up emotionally, the pain is too severe, so I have to shut it out.
I guess maybe you're a little "lucky"? that you can do this without having to build those emotional fortifications. I seem to need them, because I'm crushed without them.
So, the impulse that I feel to "get this behind me" is similar to...(well, here's a gross, graphic example I just thought of...) I watched "The Tudors" series on Netflix. A "heretical" woman pastor is about to be burned at the stake. A supporter furtively gives her a small bag of gunpowder to hang around her neck so that, once the flames start, she'll be blown apart instantly rather than having to wait for the smoke and fire to do her in. Maybe I'll just take the gunpowder, is the thing. Or let's say this journey is like a giant band-aid covering my whole body, which someone is sloooowwwwwwly peeling off, because they think it might hurt less that way. But I know I'm being flayed, and my impulse is to scream "Just frickin' RIP IT OFF already!!"
The thing to keep in mind, as any of our members with asterisks can tell us, is that it's not even going to be over, once it's over. But I think that's what I want, because I'm so worn down by the doldrums of this evidently never-ending process that I'm voting for change even if it turns out to be worse. At least it'll be something else, and that might get my serotonin flowing again, for at least a minute or two.
This is a great thread. Loved reading it and thinking about it as it relates to my dh. The end of this horrible illness must be so difficult and the years of care that goes with it.
Nikki, I think this is probably one of the most stressful things that one has to deal with in this life. It is not a flash but a long and every building emotional experience. On this journey you experience the full spectrum of human emotion. Each one of us is on a different path, that makes the emotional journey differnt for each of us. I think your age as a caregiver also plays into the picture. Your expectations of your life and what you thought you would be doing at this time vs reality. I have always struggled with being patient, I grew up in the now generation. Waiting for the next shoe to drop is painful and knowing this limbo can go on for many years is not what I thought I would be doing at this time in my life. It is what it is. I just need to learn to deal with it.
Emily, what you wrote is straight from the heart and brought me back to a different time in "our journey" It is hard to explain without going into our whole story. I have given this a LOT of thought, let me see if I can try.....
There was a time when I would have chosen the gunpowder, with a boat load of TNT to boot. Back then, I was simply consumed in the grief and stressed to the breaking point. Though Lynn did still tell me he loved me, I could not feel it. He was mean and he was abusive. Not just verbally, but physically as well.
Every frigging day was a raging battle. Though the now trivial things like the constant repeating etc, did indeed bother me a great deal, I just didn‘t have the time to focus on them. His rages took all my strength. A bath was a guarantee that I would end up on the floor. Though I did indeed love him, I was not able to allow those emotions in. Not because it hurt too much, but because there was not enough left of me.
As I was living it, I knew his care was more than I could handle. The TIA strokes were proof enough that my health was suffering, but the mental health was suffering more. But, though I did know this, it was difficult for me to face. This stranger, was the love of my life!! He had seen me through so much, including 3 brain surgeries for my painful nerve disease. He held me night after night, year after year, as I cried in pain. He never once let me down. He was my rock, my hero and my best friend.
And yet, when he needed me most, I could not help him. Now I know it is not my fault. But knowing it, and feeling are two entirely different things. I felt I had let him down. I felt the worlds worst failure.
Though I placed him in the nursing home with love in my heart, and with his best interests in mind… it hurt greatly to admit I could not give him the care he needed and deserved. Two years later I see it differently, but at the time….. God how that hurt!!!
Lynn changed dramatically when he was placed. The man he was at home disappeared. He no longer “hated” me. I was no longer his nurse and caregiver, but once again I was his wife. He was loving!! He was kind!! And my broken heart broke a bit more for what was happening to us… but, it also started to break down some of the walls I had put in place. For the first time in years, through all the pain, I COULD once again FEEL his love.
And I think, through all the hell we went through….. now that I had his love again…that is why I am not willing to let him go without a “fight” I want to hold onto what is left…….
This still has the power to destroy me… the difference is, now I have the strength to not let it.
It hurts beyond measure when I think of all we have lost. It breaks my heart when I dwell on the things he can no longer do. But, I think after each monumental loss, though the next loss is just as horrible, somehow you become accustomed to the pain. I am not sure that makes sense to someone who hasn’t been there?
For example, the first time he was on the toilet and didn’t know what he was suppose to do…. His look of confusion and fear about destroyed me. Even babies instinctively know how to go to the bathroom! But here was the love of my life, sitting on the toilet with me trying to coax him and try to explain to him what he was suppose to do…………………
I left the nursing home and went straight to my doctors office. We all have our breaking points, and that was mine. Breaking as it turns out, is not as bad as I thought it would be. It hurt like hell to get through, but it was healing in its own right as well.
Each loss after that has been hard, like his loss of ability to walk, having to eat pureed foods etc…. heartbreaking!!! But not , “Nikki” breaking.
I never thought I would say this.. But, I have reached a place where I can handle this disease. It has taken all it can from me. It is now my time to reclaim some of what it took. And perhaps that is how I am able to still feel the love in the midst of the pain ♥
Bob, I think you have "dealt" with it wonderfully!!! You could be right about the age? I hadn't given that much thought. This isn't where I planned to be at 43 for sure!! But I think it could be different if I was say 63.... good point, and food for thought. ((hugs))
Nikki, glad to see you back. I had been wondering what was happening with you and Lynn. In some ways I'm in your situation. My wife is still home with me. She still smiles at me, occasionally rubs my arm, and generally seems happy. There is little to no communication otherwise, which obviously hurts me a lot. I try to appreciate the good times we still have, and not let the bad ones bother me. If she is rebelling to what I want, I just walk away and come back a few minutes later. She will often look at me and say "Oh, there you are", and do whatever I wanted. So far the only time I have had to make a decision about treating was after Christmas when she went into diabetic coma. Some insulin brought her out of it quickly, with no aftereffects, so I feel I did the right thing.
As others have said much more clearly than I can, none of us can fully appreciate what someone else is going through. Some, as Emily said, want this trip over with. Others want to hold on to their LO as long as possible. All we can do is support each other as we all take this journey together. We had (and still have) such a great marriage that I sometimes said we would have to pay for it somehow. AD was not the way I planned on paying for it, but all you can do is play the cards you are dealt.
Please stay with us and let us know how things are going. We all care about you and Lynn.
Nikki, it is good to hear from you again...please continue to post, because I often can relate to , and find great comfort in your words. I agree that an antibiotic is appropriate treatment...it is in a way a comfort measure when you consider what would happen if you did not treat the pneumonia...and as you say, Lynn is still with you in so many ways. Please let us know how he is doing and how you are doing.
((Marsh)) I care greatly for all of you as well ♥ I am not sure how I would have survived having to place him if it hadn't been for all of you!!! I am not sure I would have in fact.
I have always thought you were "blessed" that your wife never had the "AD devil"... I think it allows one to hold onto the love "easier"
It is hard, harder in many ways when our loved ones reach this stage. But it is "easier" once they reach the point where they no longer suffer and seem happy in their little world. Hard for us, harder in truth.. but at least their is the peace in knowing their suffering is over. It has to be enough...
Bella, it is sooo refreshing to know someone else thinks treatment is a comfort measure! I have seen many there die from pneumonia, it was not peaceful like I was led to believe. They only gave him 3 days of antibiotic and it proved not enough, so he had to have another round. He is finally starting to feel better! *whew*
Nikki even though Bill was at end stage forever I still let my heart rule my brain. With a pill we treated pneumonia. No biggie and not invasive. I treasure life.
Nicci, you've been with this man since you were 17 years old, all of your adult life plus a little even before adulthood. I can certainly understand your desire to keep him alive as long as possible. When I realize that you are the same age as my younger daughter, who's living such a good life with her young husband and three little girls, I can hardly believe what you've gone through and my heart really goes out to you. Your life is so different from other young women your age that it must be horribly difficult to find peers with whom to interact.
I was 18 and 5 months old lol...but yes, I see your point. Looking back I was very young, but even then I knew what I wanted and fought to get it. Lynn had HUGE issues about being with me, but I was persuasive and convinced him age really had nothing to do with love. Souls do not know age. they only know when they have found their other half. And I knew I had found mine! ♥
We were blessed with a wonderful love that lasted well past diagnoses, and still burns within him even now. My friends ask me if I had it to do over would I do it again…. In a heartbeat!! ♥
If my DH had this dread disease when he (and I) were younger I would have fought with all my strength to keep him with me for as long as possible. I can't even imagine what it is like for someone our daughter's age to have to go through this. Sorry that you are having a disconnect with most of those posting but you have every right to feel as you do. My heart and prayers go out to you. <<<<<hugs>>>>>
I love this site and this family. Where else can you post your true feelings and not have someone judging you. We all come to this journey with different out looks on life. We older ones have experienced death in a lot of our family and friends and we have learned to cope with the emotions. Some days I seem to view death as a friend. Does that seem crazy??? And yes, Nikki you are my youngest daughters age. I know I am tired and some days I want just to sit on the front porch and rock.
NIKKI. In my case it was my DH who convinced me that " the best tunes were played on older fiddles" and I bought it!! ; ) Would select him all over again finding my other half of me. He has been a wonderful "spice".
I always would say " well your ex got the kinks worked out for me". I didn' t know him then..I met him about 6 years post his divorce. He still is a shining star..though I do get tired and worn down by the disease.. I could have it so much worse than I do and those who share the woes of the temperment and the PnP group, I thank them cuz they keep my perspective in control...limits my pity parties they do..
Nikki....I am one of the "not going to treat" people, but I'm talking of invasive procedures. If a pill will make my DH's journey more comfortable, I wouldn't hesitate. I also relate to the not wanting to let go. Even though he is not the man I married, I still love him with all my heart. My heart breaks when I watch him struggle with everyday things that I take for advantage. I cry daily when I watch him struggling. I hate this disease, but like you, I still love my DH with all my heart.
Nikki--I am older than you but feel the way you do--I want my husband to live as long as possible. When he was dx almost 6 years ago, I hoped the progression would be slow. It has been--he is now mid/late Stage 6. Yes, he's not the person he was, but there are still times when his soul shows through. Lately he has had increased anxiety/pacing, has been refusing to shower, etc., to the point where I may call his neuro about upping the meds. Yesterday, he was agitated about his reflection in the mirrors and paced the entire day; my 96 yr old Dad is having delirium and from the combination of both their declines, in the evening I just burst into tears. In a flash, my husband saw it, stopped pacing and came over to hug and kiss me and calm me down (he thought that it was the people in the mirror that had upset me, and I went with that story). There was no more pacing, he was calm all evening and reverted to being my "caregiver", patting my hand and telling me to take deep breaths (he couldn't find the words to say "take deep breaths" but he said "do this" and demonstrated it!) Experiences like that underscore that the person he was is still inside that brain, and if I can relieve his mental anguish and ensure that he's not in physical pain, I want him to live on. Of course, I also agree that invasive/aggressive procedures don't make sense for people with dementia.
I forgot just how much it helps to have people to talk with! Well let me correct that, people who actually understand what you are going through! ♥
Bama, "Some days I seem to view death as a friend. Does that seem crazy???" ... I don't think that is crazy at all! I think sometimes death is a friend. I have two uncles dying from cancer, it is tough to witness. I love them both! But they are suffering so..... death would be a friend to them, and I find myself praying God calls them home soon.
Mimi, that is soooo sweet! I got a good chuckle about the best tunes being played on older fiddles :D
Diane, this disease sucks the life from everyone it touches. I too hate it, with every fiber of my being!! I cry a lot too, but now I don't fight it. It is ok to cry, I believe it makes us stronger. It hurts to lose someone we love inch by inch, year after year..... crying is a way to express that hurt. I also agree with you, as much as it would hurt me to lose him, I would not do aggressive treatments for Lynn either.......
Marilyn, In the beginning I too wanted this disease to go as slow as possible. And I was niave enough to hope that when he got really really bad that it would speed up and quickly take him Home. I didn't get my wish, he went from one stage to the next at lightening speeds!! And now that we are in late stage, my wish has changed, now I want him to stay as long as he can.... funny how when you are living it, your feelings tend to change.
Right now, I would give just anything to be back at stage 5!! I never dreamed then that one day I would long for those days back... How moving that your DH is still able to pull himself out of the fog to try to comfort you! Further proof that they are still in there, they are just trapped.... it is amazing to me the things that can and do help lift the fog, if even for just a little while. I am glad you have these moments, they give one strength to carry on. ((hugs))
nikki on the note . ' do i belong here' i think many of us older members who have been thru the first- middle- and now into the last stages ask ourselves the same question. so many newer members that are just beginning to see the difficulties strains and stress that come with the mid stages-where most seem to be -. sometimes i feel i have nothing meaningful to contribute these days as with DH in stage 7 and mainly bedridden-i dont fit in the conversations with the mid stagers- most of what the others are fearing i have passed. scarred, drained and emotionally overwhelmed much of the last 11yrs i can say now that i feel much compassion and shake my head as in 'yes i understand completely' when i read stressed out posts of the newer members.
some of us want to end the journey as quickly and painlessly as possible. some of us want to continue having our spouses present and accounted for as long as they have breath. each has their own ideology on how to best survive this horrific time in our lives. i think we all belong regardless of our thoughts, because we all have AD in common-its the profound differences in thoughts and ideas that make this group work so nicely. good debates and different views are much needed to help us see the flaws of our own thinking sometimes. we can learn from one another. divvi
There is a place for all of us. Teachers, mentors, shoulders to cry on. After I lost my dear husband I thought I would just move on. I found I had made good friends here and will stay for a while. I wish I had this group early on when I had no idea what was going on with my husband and thought I was totally alone.
bluedaze, I hope you'll stay for more than a while. You've helped me personally and so many others with different problems we've had. If everyone leaves at the end of their journey, the rest of us would be stumbling around in the dark.
Nikki, it's good to see you posting again. Yes, you belong here.
I think that is perhaps why I stopped posting.... I could of course remember what it felt like to feel that way, one never forgets! But as I read post after post about how bad things were, though my heart broke for each and every person going through this.... in my heart I was wishing I could trade places. I would give anything to be back in those days! How crazy is that!? I am not envious of people my age going on trips and leading carefree lives... but I do in a way envy those in the earlier stages. As hard at is was, it was so much better than this. *sigh
I don't really recall when I first came to this wonderful site, but I do believe it was at least two years or more ago. There was a time when I didn't visit very much because my dh was kind of stable until about nine months ago when he started going down hill faster.
The one thing I think I have noticed in the time I have spent here recently is the number of spouses who have lost their spouses. Is this just me or has anyone else noticed this?
Dazed, all second that! I would hope that we that are still going through this journey would be able to benefit from the pioneers(the ones that have gone on before us) You have information to give us that would be lost if you didn't come back here and share. Please continue to come back often.
Judith, it isn't just you.... that is another reason I had stopped coming here.... so many new * Though not in denial, this is something I am just not ready to face... accccck!
Vickie, you are right! the hugs ARE great, as is talking with people who truly understand. I didn't know how much I missed that until I decided it was time to "come home" ♥
I too don't visit this site as often as I had before. I struggle with this disease too. I want to be here for others but at the same time I am trying to get me back. My husband progressed so fast that he doesn't know who I am, he isn't able to communicate, he doesn't have the ability to recognize people who are 12" in front of him. . . . He has his flu shot every year. We had our discussion about what he wanted prior to his decline. I know he doesn't want to be kept alive artificially. Even with his wishes known, it is very difficult. You never know what you will actually do until you are walking in those shoes. I sometimes long for all the repetition, the following me like a velcro husband, the angry outbursts, the obsessive behaviors, etc because he was able to live in this world and connect with people. He is still living and he cannot connect with people. When I reflect back and read my journals, I know I was stressed beyond believe. The reality is I really don't want to live through it again but I miss him terribly.
We all belong here. We are all traveling at different stages, different dementias, different medications, different behaviors - and on and on. We all have something to share with all the others here who are still walking the walk. Sometimes we just don't feel like posting - I'm like that. I sometimes feel all I ever think/do about is ALZ. So, maybe I take a little break and try to do something else. But I always come back and my heart breaks for you younger ones who have to deal with this, and especially if there are children still at home.
I know how you feel, Nikki, as do we all. Would I treat pneumonia? I honestly don't know. But L. is still sweet and smiling and undemanding now (he's bedridden, has aphasia) and seems to be enjoying life. And still using his chopsticks for sushi!!
I placed my dearest husband Dick on Wednesday. I know in my head it was the right thing to do, but Nikki, if i could get him back to where he was, even one year ago, I would, in a heartbeat. Today, when I was at the nursing home, he thought I was his mother, and asked how 'Daddy' was, and why he hadn't come. I brought him back to the day room, and went home, not realizing how upset I was until I spoke to my DIL and started crying. i had hoped the crying was over.... but it will never be, and tomorrow when I go he might say.... oh here's my sweetheart, and I'll feel his love again. This is so painful, to watch the person you love so much disappear. Worse in many ways than some other fatal disease, because this one takes the loved one piece by piece so that evenutally you don't even recognize him. but the love doesn't die... it goes on, and the smallest glimmer of the person who used to be there gives us an inordinate amount of Joy. On the one hand, I wish it were over, but on the other hand, I want him to be with me... How to reconcile those feelings? I don't know but that's how I feel. And noone will ever take his place.
Oh ((Chris)) I have tears running down my cheeks as I read your post....... my heart is breaking with you, and for you. It is so difficult when we have to place our loved ones. Such an emotional time, and one of the most difficult things one must face on this journey. I don't think we can reconcile the different emotions that combat within us. We learn to live with them and if we are lucky, overpowering love drowns out the other emotions.
Lynn is happy and content. He knows a peace that I never will in this world. He still knows me, and when he is able to express it with a few uttered words, a touch on my cheek, reaching for my hand, puckering up for a kiss....those small acts of love mean more to me today than any grand gesture of the past. Alzheimer's has taken so damn much from us.. but the love, the love remains.
I hope tomorrow is a "here is my sweetheart" day for you. Keeping you deep in my heart, thoughts and prayers ♥ ((big hugs of understanding))
Clare how amazing that he can still use the chopsticks! I am glad your L. seems happy too. It is so hard, but it brings me peace to know he is happy in his little world. I think each of us can only know what we will do when we are actually facing these hard choices. For me it was not a hard choice at all. I have seen people die of pneumonia left untreated, I didn't find it humane or peaceful. The bacterial or viral pneumonia is just a pill to treat, and it did bring him comfort and relief. I would treat again.
The only time I was wringing my hands was when he had the pulmonary embolisms. We didn't know what he had at the time. I just knew something was wrong from watching his breathing change. The nurse came, checked his stats and told me I needed to decide if I wanted to call the ambulance or if I wanted to just do comfort care there at the nursing home. I was stunned for a moment while her question sunk in......
I told her I wanted the ambulance called. Because how could I say no to treatment, if I didn't know what was wrong with him?! I am very glad I made that call. The ER visit was calm and didn't bother him in the least. He actually liked the ambulance ride! SOOO different from years ago.. The treatment was easy and noninvasive. His quality of life is better for it. *whew*
I made the right choice for Lynn and I... and that is all any of us can do. What we feel in our hearts is right.
Nikki, you know I love you, and appreciate how you feel....I'm older, I'm tired, I'm numb, tears are always present now...In the last two years, my life has truly fallen apart...I lost my daughter, then my pet, and in January my best friend died of a sudden heart attack. She and I went to lunch on Saturdays while I had a volunteer stay with my husband. We had been best friends since the third grade. I could say ANYTHING to her. She was always here for me. Now, I'm sitting at my computer, typing to my friends and "family" here, and trying to find a way to build a wall around my heart so that I can survive until this part of my life with AD is over. I can't allow myself to feel like you do, or I wouldn't be able to do what I am doing. I can not give up. I have to keep going. IT IS SO HARD!!!!!
My love to all of you, and thank you for being here at Joan's......I appreciate all of your feelings - I once had those same feelings...Nikki, I'm the one who doesn't belong any more....
Mary, you DO belong here! We all do! Within the past 4 months, I have lost my Mother, my son was murdered, and DH is so confused with all that has been going on and so he is worse. It is so hard, as you say. I also have had to build a wall around my heart so that I can survive.
But we all belong here on this wonderful site, where cyber friends understand and don't judge.
Mary, you know I love you too!!! ♥ well aren't we just the pair, both going through our own private hell and both feeling we don't belong... It wasn't until I saw that you wrote that you didn't belong that it struck me how preposterous that was! If you will forgive me for telling you how you should feel *wink* I do believe the support offered here could be a huge help to you my friend. and I know as always you will be a huge help to me and others ♥
After reading so many replies, I don't think it is a matter of if we belong here, of course we all do. It is more a feeling one has..... I think it is more..the later you get in the journey, the harder it is to post. There just is no good news at this point. There is no "new" news... its all just heartache after heartache. I have just read your post, and where your DH doesn't know who you are ... I have to believe that plays a part in how we feel. If Lynn was basically comatose like dear Sandi's husband, I would of course feel differently…..
I do understand the effect of compounding loss. I think it makes this journey so much more difficult. As you know I lost my baby, then Lynn was diagnosed, then my Dad took his life, and we almost lost my Mom…. Then we lost 3 very close family members…. It seems I have lived in a perpetual state of mourning for years…… never being able to “finish” the grief process ..
I am sorry to hear of the loss of your dear friend. I hadn’t heard, that has to be so very difficult added to the loss of your lovely daughter. A loss, I just can not imagine……. I have gained so much strength and courage from you… please, if it isn’t too much for you… keep posting, we love you ♥
Mary, you belong here now more than ever! I have been feeling like you are too these days. My family is far away, no one from my side live in the same state. The kids don't live anywhere near either. And while DH is pretty easy at this point,he is not wandering, not being a pest about driving etc. But the daily routine and lack of time for things I want to do, or just relief for a time from the 20 questions every day...is hard.
And there is not one other place but this one where people really get it where others think they do and patronize. I cannot stand that.