I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. As usual, I am wondering if any of you have had my same thoughts. Different ones? I'd like to hear from both Alzheimer "widows/widowers" with LIVING spouses, and real widows/widowers* whose spouses have died.
As a widow, I can tell you, in my case, there is a world of difference between being a "real widow" vv being a "widow in limbo". When I was a "widow in limbo" I still had a "presence" in our home. He was mostly non-responsive but he was a "presence. I could still "touch him and hug him, kiss him and he was a warm body completely dependent on me - just like my kids were when they were infants. I, like most of you, was completely overwhelmed by the uncertantity, loneliness, lack of his touch and his completely self-absorbed in himself. I think if late stages, all they have left is the "will to live" and no longer have energy or desire to comfort us.
In the after - there is no longer a "presence". You are single and no longer part of a pair. You are completely alone and much older then when you were previously single. Most of your "friends" or acquaintances are part of a pair or perhaps so self-absorbed in their own grief of being a widow or widower they have no time or inclination to join you for lunch or other activities. I have reached out to a few widows who were friends in the past and mostly they seem friendly but they prefer to continually grieve for their deceased spouse. I have discovered that now - most of my "friends" are online friends and many are closer to me than family. I think this may not be the case if you live in a "community" where there are many single widows with the desire to continue with their life - however - in a rural area such as where I live it seems to be the way it is. Yet, now, I am glad he did not linger in a vegetive state like so many of your spouses. He would not have wanted to live that way and neither would I. I choose to be happy he is no longer suffering and I choose to make a new life for myself as a single, but I still treasure moments of dreaming about the way it "was" before AD.
joan your sadness is felt thru your blog. indeed the loss of someone so near and dear to us will forever be to me one of lessons most severe challenges. i also have no idea how i will cope when DH presence is no longer able to be felt, seen or touched. like imohr says the body is still here and that relieves the anxiety some. we still cling to the aura of their presence. i felt a bit of what it will be like when DH moved into a hospital bed - away from me and i was left alone in a kingsize bed. it was overwhelming to say the least. and panic set in bigtime. i can only assume it was a sort of death of the 'first level'. i think we will experience several levels of death within this disease and when the various levels hit you will feel desperation and extreme sadness and lonliness. of course the end level is losing them completely. it is so very sad to think all of us at some point without exception, will have to pass into the realm of widowdom. its a daunting experience none of us wish for. divvi
Oh Nora, I am so sorry. One year ago my daughter was in critical condition for 3 weeks. I understand what you are going through. I pray she will be better soon. ((((((HUGS)))))
Great blog. Plenty of time spent in separate beds here and that was painful. After placement I found the relief from hands-on care was not enough to offset the loneliness of the empty house. I can only imagine the sorrow that will come when he is no longer there to visit, see and touch. Indeed, as Divvi says, your sadness is evident, Joan, and obviously shared and understood by many. lmohr is a marvelous role-model and inspires me to keep on putting one foot in front of the other and not to wallow in the sadness that threatens to overtake me at times.
Hugs to you, bluedaze, and prayers that your daughter gets well soon. The terrifying moments are most difficult when our partners are no longer there to share them with us and offer comfort.
Nora, so sorry to hear about your daughter. will be thinking of you.
joan, I have been thinking about this a lot lately. The loneliness I feel when we are together is often overwhelming but the final loss of his "presence" is something I can't imagine right now.
Bluedaze, your daughter and you are in my prayers.
I sometimes feel so lonely with my dh that I just sit and cry. I especially miss sharing sad things and happy moments, the understanding touch or hug and the feeling of togetherness. like Terrry, I don't think that I have a sense of how I will experience the final loss. I guess I mostly do not want to think about it.
Joan, I can almost feel your heartache….. As much as we think we are prepared, we just never are. It is yet a different loneliness when you have to place your loved one as well. Not having Lynn with me at home was like a death, the death of us living together as man and wife. It was much different than feeling lonely while he was still living with me. It still hurts a great deal...
Nora, I am very sorry to hear about your daughter...... I am keeping your dear daughter and your family in my thoughts and prayers ((hugs))
Joan I have had a reoccurring dream since placing Lynn................ in the dream the nursing home calls and tells me they are sorry, but Lynn is gone. Even in a dream I can't accept this and tell them no they are wrong, he just needs me. It is always the same.... I race to the nursing home to be with him, but he isn't in his room, he is in what looks like a sterile hospital room. He is all alone, looking so small and lost. I pick him up and cradle him, as I caress his check, he comes alive....and speaks to me.... the words he says are always a bit different, but they all mean the same thing.... he loves me and he is so happy to see me................
Then I am frantic, carrying Lynn while running down the halls trying to find someone to help me, screaming for all I am worth.....he is alright, he is alive, he just needs some help. Please someone help us!!! .............. I always wake with a tear soaked pillow, a knot in my stomach to the point I sometimes vomit, and this foreboding, overpowering sense, of loss and devastation.
I agree with Imhor*. My brother just lost his wife to complications from the treatment for lung cancer...the steroids causes perforation of her stomach..she never recovered from that...grrrrrrrr they overlooked the ulcerations in her mouth and the indications of what it was doing farther down the digestive tract but that is for another day.... His wife of almost 42 years is gone..while she was alive and fighting on for her life, she was there and as hard as it was to see that she was really losing the fight, there was a glimmer of hope something would provide at least remission for awhile..but it was not to be..her death came a good deal earlier than what the disease would have caused on it's own. He now is really alone and the house screams Becky, everything about the house ( she gutted it and redid to a glorious state..she had real talent for interior decorating) and in a way it consoles him but in a different way it haunt him too. This ALZ wears us as caregivers down to the bone. WE get tired, we get frustrated....we get angry. Where my brother could talk to his wife and have a decent conversation about any and everything, we can't. Our loss is over time and one would think we would start to get " used to it" but we don't. But when that person is no longer in the house or in a place where we can see them, no matter how ill they are, they are still here..we face the question about how much they may be suffering..,maybe a lot or not..depends upon what else is going on in their health history. But once they are gone..as happened with my mom to this disease, there was not the slightest chance of hearing her voice anything even it if made no sense..or see how she could wave her hand..it was all gone.
The thing I have noticed is that because we have been living with this loss so long, when our loved one finally is released from this horrible disease and by extension so are we, in some cases some can move forward a bit more easily than one in my brother's situation..we have our moments and self bashing for the times were were not patient with them but we are human too..I think we tend to forgive ourselves with more difficulty than others who lose a spouse to cancer..they know they tried everything and they did not get impatient with the spouse or child but with the medical ineffectiveness..we get impatient with the never ending chores and the robbery of even enough time to do anything for ourselves..things we want to do not only get pushed to the back burner, they get pushed off the stove altogether.
There is no easy answer for either.. but once the presence is gone.....all is gone....and if we have videos it is the only way we can hear the voice or see the actions and gestures...it is just sad no matter what.
Oh, Joan, I am so there with you. We are just hanging on to that last thread of what was, but what will never be again. My heart aches for you and all of us.
I too have a similar dream about not being able to reach him. It is kind off like the dream that I had before each one of our children....that I have left them behind somewhere and can't find them. They have been forgotten. It is such a frantic dream.
Bluedaze, so sorry to hear about your daughter. Will add to our prayers.
bluedaze, I really hope your daughter is going to be ok. You are still trying to adjust to losing your DH and now this. Thinking about you and hoping everything will be ok.
I wonder if we are all linked in some special way that finds so many of on the same page so often. Even though we may be at different stages in our caregiving we all seem to be sensing the same things. As for me, some days I long for this to all be over and I can be free to go on with my life - my life that I see being totally torn from me day after day in the never ending cycles of caring for a spouse who no longer can care for himself. Other days, when I allow myself to wonder what life will be like when he is gone I feel so overwhelmed, as I hear from all of you. I, too, get a great big lump in my throat as my eyes tear up when I think about a house without him, a day without even seeing his face or hearing his voice, no longer being able to hold his hand or kiss his lips, a life without him; It's such a powerful and sad mix of daily emotional stew we all must eat.
I am not much of a "chatter" on chat sites, but I am so very glad and grateful for this site and all of you wonderful friends who all understand and love one another. I think I have to go for a walk and a little cry now.
He is NOT here NOW-Iknow it will even be worse when it is OVER-but right now I do not see how! I have cried this entire evening-Paul has been so much worse this evening,defiant and just no comprehention to anything I say. I have had a screaming match with someone that does no even comprehend that I am screaming in the first place let alone know why.It is like living with a zombie most of the time and I just can not get adjusted to it. I feel so mean and cruel all the time. Then when he finally goes to sleep at night and I look at him,I see the boy of 18 that very young girl of 15 feel so in love with that there wasw no way of keeping us apart-and then I see the man in his twenties that fathered my 2 girls and worked so hard to provide for us.Then there was the man in his late 20s that became mentally ill and we got him back on his feet .# through all the years.Then I was always able to handle what ever I needed to do to get him well again right up into his early 50s-we dealt with all kinds of mental problems and they did not tear us apart-BUT this damm disease is ripping us apart and tearing my heart out along the way.I am trying to hold everything together but I seem to be slipping farther and farther away from the man I have loved for 45years. Sorry for the babbling and poor spelling etc. it is hard to see between the tears.
I am so sorry BAK. I don't know what to say. There are no words, but I wanted you to know I do understand and feel your pain. I had to "build a wall" between my dh and myself. It was an invisible wall - but I had to "distance" myself from him to survive. I also "fell in love at 16", well a little older than you were - and he was also 18. We were also inseparable for more years than you and your dh. Take a deep breath and remember - you are not alone. Family and friends may desert you but we here will not. Talk to us.......take care...
Thanks Imorh, I know I am not really alone in the journey,but it sure feels like it. I also know others are having it much worse than me,but that is of little comfort when you are setting alone in the middle of the night crying for something that will never be again.As he is finally sleeping now I think to myself tomorrow I will handle things better-tomorrow I will be kinder but as we all no tomorrow never comes,and even if it did it would only be a repeat of today or worse.
bak-no one has it worse than you. You are experiencing terrible hurt and the end of your dreams. It doesn't get any worse than that. Be kind to yourself.
bluedaze is right BAK. Everyone here is dealing with many variations of dementia. No two are alike. Your dh may not be as bad as someone else's but in some areas he may be worse. Remember, yesterday is past. You now have today and tomorrows. Well, today is almost past. Time stands still for nobody. Look for things the two of you can still enjoy together. It may be something as simple as going through a drive-thru for a sausage biscuit and fancy coffee (my dh favorite thing to do every morning). He really, really enjoyed that biscuit and coffee. My dh also enjoyed a shower, as long as you didn't get water on his face. He absolutely love going to his granddaughter's basketball games and we pushed him in a transport chair.
All I want to say is, treasure your memories. I lived in a marriage without affection. We slept in a queen size bed, but that was "too close for comfort" for him. So, we went back to his original king size bed. Initially, our sex life was so great that I did not even realize that there was a total lack of affection. When you speak of spooning Joan, I know what you mean. The man I shared my earier life with, but left because I didn't want to remain in Europe, well, that's how we were. Sometimes I feel so very alone that I am tempted to reconsider my leaving my H. But what is life without touch, or at least the memory of it? I can recall the countless conversations prior to dementia that I tried to explain to him the human need for touch. What really bothered me was that he would pet the cat affectionately, sitting right next to me, but not touch me. I know that I was "loved" but could never understand why I was not loved enough to get a hug that I asked for and craved. Hell, strangers hug me. I know memories do not replace the present, but savor them. Cherish them.
bluedaze, I am so sorry to hear that your daughter is ill. I am hoping she will soon have a very complete recovery.
Kitty! Good to see your name up there. Email me - check my profile I had to change my email address. Old one got hacked.
Loneliness...wow. I've adapted to the losses over the years for the most part. Occasionally it will hit me and the tears start to flow without warning. And when things are overwhelming or I haven't had enough sleep I get angry and cranky that every single thing now falls to me. 3 years before DX there was this "disconnect" that began in which I felt a loneliness and was confused and angry and started to check out emotionally from our marriage. I felt some hope several months before DX when I hadn't a clue that he was sick and we began seeing a marriage counselor.
Then conversationss I was so used to having with my PhD scientist husband declined relatively slowly compared to some I've read about here. A good friend of ours, also a very brilliant man, developed dementia in his 60s. He was maybe 15 years older than me but a kind of soul mate and his wife was a dear friend. I remember how I adapted my conversations to his level without knowing a thing about dementia, just knowing him, and not want to put him on the spot. When DH started reminding me of this friend I just did the same thing. I didn't let myself think about the old days with my friend until his memorial service when I went back to where we used to live to deliver part of his eulogy. I don't let myself think about the old days with DH either. It's too much. Thinking about the future loneliness when he is gone is ...... well I just don't do it. I know for me though it would be the little things we can still share (actually they seem like huge things but sound small) like running upstairs and telling him to look quick out the window at the latest deer or squirrel antics, or nudging him to take a look at the cute positions our pups get into. And I can still take him out to dinner in restaurants and he loves it. Being a bit of a foodie and not feeling comfortable eating dinners out alone, I know when I am unable to do that it will be a major loss and I will feel the full blast of being "single" again. That said, a future relationship seems way too much trouble.....but taking a page from Nikki's book I am trying to stay in the moment as much as possible.
One moment which sticks in my mind is Christmas of 2005 I think. We went to Venice for Christmas. AD wasn't even a glimmer at that point. He was still working. We were walking the streets of Venice amongst the revelry of the holiday season, so many people out and about laughing and talking and holding hands. As we walked, tears started flowing down my face. He didn't notice which contributed to that feeling that was to become all too familiar. I felt so alone and feeling alone amongst that type of atmosphere was excruciating. I didn't say anything but in bed that night with my face turned away from him I cried until the early hours of the morning.
Nora sending you prayers.....it doesn't seem fair. Isn't Alz enough for a family to bear !!! Sometimes nothing seems right or fair, nothing. As I read Joan's words I felt like I was reading Dickens.....the ghost of Christmas future. My path of things to come. Joan your pain cuts like a knife to my heart, your journey is mine like so many others. Your honesty amazing. This story doesn't have the neat ending that A Christmas Carol had but none the less "God Bless us one an all". The survial of this disease is a battle like none others. We didn't ask for this, we don't want this but none the less we have it. It's not fair, it's not, it's not, it's not.
Thank you for this place to just read about others and see I'm not alone. Mine is still an early journey - just starting and I'm learning. I need someone to talk with who is "normal" I care for my 89 yr. sister who lives in an assisted living place she has aphasia so communication with her is sometimes difficult. Then my 44 yr old bi-polar (juvenile) daughter can be a real pain in the a**. Mood swings that I never can predict ahead of time. Husband sometimes seems just himself then in a wink is not. I feel like sometimes I'm in never, never land with Alice. Maybe I've mixed up my stories but then so is my world. My daily prayers are for all of you in your journeys.