In my mind there are four main phases to the alzheimer's spouse experience. Each one may last for years
-learning that you have it and trying to come to grips with that -coping with their illness while they're living with you -coping with them being in a residence and not with you anymore -coping with life after our spouse has passed
Some of us do not put our spouse into a residence but many do. The main board here is for the main period of the Alzheimer's experience for spouses which is trying to cope with them with us. Very few that come to this board do not know they have it. There is also a Widows and Widowers thread stickied to the top for life afterwards. This thread is intended to gather similar issues for those that have a spouse in a residence.
My wife went into a respite center on January 3 this year. I then transferred her to a nursing home on Jan 26. This is April 18 and I have been alone for 3 1/2 months.
I went through a bad period where after being so busy for years I suddenly was alone and all the emotions I had blocked came through because I was no longer busy. I also had days and hours of happiness because I had been deprived of basic things for so long such as just going to the toilet frankly in peace or reading the paper or being able to talk on the phone. But it was a shocking period.
Now I am still consumed by thoughts of my wife, of how I don't fit into the world I used to know any more (we had no children), and it's very difficult for me because I'm either thinking of my wife and feeling the gut wrenching pain of her condition, that I put her there, and what we both have lost, or I seem to block her out of my mind and just feel strange in my new life.
Now that months have gone by they have knitted together and I am not overcome anymore by her being there but I no longer block this out at other times. The effect of that is that I feel I'm not getting on with my life and frankly don't know what that's supposed to be.
I've been out with friends and family and alone and I've been absorbed by where I am. The difference is now that when I think of her I'm no longer overcome or feel bad suddenly. It's more like horror in awareness and denial in blocking have integrated into a kind of saddness all the time with a feeling of questioning everything I do and don't do.
I want to know what others are feeling about their own selves in this situation. How are you feeling? What do you do?
Wolf--my experience has been a bit different than yours. I moved Steve to the ALF last August, and almost immediately, felt a tremendous sense of relief. We had no children together as well; were best friends and soul mates, etc. Almost idyllic relationship--35th anniversary in July. Anyway, I must have done most of my grieving while Steve was at home--he was one of the more difficult AD patients, I've written many times about the geripsych stays, being thrown out of daycare etc.
It has been fantastic to have a life again after taking care of him at home for 7 years. Going out with friends, to movies, lectures, lunches, dinners, theaters, gardens, daytrips, longer trips, etc. I've been able to catch up on medical and dental appointments for myself; I'm still very involved with the Alz Assn and visit Steve at the ALF every day. I joined a women's organization and I'm exercising more; just having FREEDOM is great. I know I'll never take it for granted again. So, to summarize, my transition was pretty seamless and immediate--the man I married was gone years ago; I love this new person and am totally committed to his care, but I love my new life too.
(I'm sure my happiness is directly related to the fact that Steve also had a seamless adjustment to the ALF, he is content, and the care is good.) It's the old "If he's happy, I'm happy". This transition may be a bit easier for females--we tend to have a stronger, wider support system of friends and relatives (in general).
I've felt that and I believe in that. If we are to say that life itself has value and that as a couple we lived our lives in that way - then it must be true that we are to allow ourselves to fully enjoy life again. I'm sincerely happy for you and believe in what you're doing.
I'm suprised to be honest that I'm so stuck in guilt of not seeing my wife more even though she has almost no cognition of any kind and is getting along well there with a truly supportive staff. Yet when I go it is clear I have all kinds of damage because it rips at me that she is in such a state and I am not. I've never shirked from telling the truth and I think I am having trouble coming to terms with what has happened to us now that I have all this time.
I go somewhat more than once a week and she knows it's me but can't connect in any way and often just walks away continuing what she's doing. Yet I always come back feeling horrible.
The truth as best I can see it is that I am still going through the process of accepting AD at all and while I have many things I want to do and am glad to be alive - I'm apparently not ready to face that I have this life while she does not.
Wolf, I didn't have to place Gord although the plans were underway. I think that I would have felt like you do. When my mom was in a nursing home, we would sit in the family room and I would watch the couples. I always thought how awful it must be for both of them. The one coming to visit while still maintaining the life they shared at one time. For the other, the pain of seeing their spouse leaving to continue that life. Of course, that was if the resident was not cognitively impaired. The last 2 years of mom's life, I knew about Gord and knew that would be the life I would be living.....or at least I thought it would be. From my friends whose husbands are placed, I know that it is a very difficult life for them too. Hang in there. "They" say time heals all wounds and I hope that "they" know what they are talking about.
I don't think that time heals all wounds.Actually I have often thought that a rather flip statement. For me time gave me a chance to figure out where I was and where I was going. I had to accept the pain to get through it. The pain has lessened to the point that I can breathe. I don't want to forget what we had so perhaps I don't want to be completely healed.
This is a really good thread, one that I have been thinking about quite a bit lately. I'm constantly waffling back and forth between it being a good decision to place my husband and the idea that I should have kept him home.
After placing him in a home two hours drive away and driving that twice a week for a year, I made the decision to move to that city for the winter. So I left my support system of friends and relatives to be close to him where I have none of that. I thought I would easily make new friends with all my free time and would be busy with new adventures. Not so. I haven't managed to make any new friends except the gals at the ALF who I don't really want to see outside the home. I see my husband every day, sit with him through lunch and lay him down for his nap after. Sometimes I will lay with him until he goes to sleep and enjoy that comfort of our bodies remembering how to be comfortable and close. Beyond that I feel like I'm stuck in a place where I don't have the emotional energy to move forward. I've been to the bookstore, the library, gained 15+ lbs, joined a gym and tried to lose it, walked by the river, gone to a few concerts, and tried my best to get busy living again. As Wolf says, I must not be ready, so I think I will just carry on like this until I am ready.
(I am, however, ready for a good laugh now and then. So if you all could please continue to post on the "Let's have a little humor" thread, that would be great.)
Wolf--another thing that makes it easier for me is that my husband still recognizes me and is very affectionate. After years of anger and grouchiness, it's great to get hugs and kisses. If that reverts back to anger/not recognizing me, it will certainly be a hurdle and I'll have to get over it. At this point, he does stay with me the whole visit and even tries to tell me some jokes (gibberish, but after all these years, I can recognize his joke timing and facial expression). I use two things Steve likes to help forge a connection when I go--cookies and music. Sometimes we even slow dance. Maybe you could try a favorite food/music with your wife?
The answer for why Steve, not me, is clear in this case. His Dad had EOAD too. It's not fair, but it's reality.
You know what? I feel pretty good about getting a sticky.
I don't think I'm alone in this at all which basically is about coming to terms with it in our own way.
I see a number of possible aspects to it which may work in combinations:
1. Guilt/feelings about having decided this. 2. The strangeness of being on our own now. 3. The reactions from being so busy and hands on and then suddenly having time and quiet. 4. The thoughts about what you are going to do with yourself going forward. 5. The conflict of the two forking roads now branching - one which is the life you had ending and the other which is the life that really should be invested in which is your future.
I've always talked about this disease not taking us both. That has always meant the caregiver must somewhere invest in themselves in the same way and with the same determination we fought for the welfare of our spouse. That must mean that if we reach this phase, we absolutely must put energy into our life while we are still seeing to the welfare of our spouse.
There is a certain selfishness which sounds bad but isn't. We have two people to care for and both are a challenge. The spouse with a loved one in a residence must start investing care onto themselves as well because we really do have one leg in each world now. And this may go on for years.
In my case, I think that means I need some time to assimilate what has happened to me these last five years. The social worker at the residence agrees. This is all hitting me now that I no longer need to be strong the way I was when I took care of her myself. And while I like to think of myself as invincible, the truth is I've been pretty beaten up by it all and I really do feel that every day.
Going out with family and with friends where she should be there, going out to events and enjoying myself, going through the house and gradually deciding what to do with things, learning how to feel like myself again, and mostly learning to accept where she is and what happens in the future for her.
Family and friends who have been close are having trouble understanding this. I know that my real feelings are that I don't really want to live without her. Whatever it looks like, I've come a long ways.
And in that same rawness of truth, if I ever see this Al Zheimer, I'm going to rip his heart out and eat it in front of him. You can put that in the bank.
I am so glad Wolf started this Thread. We are in a separate phase on this Dementia Road. Our LOs are gone…but not released from the disease. We are alone but not yet free to build a new single life. All the work 24/7—who sleeps?—stopped,. The hours are empty and we have to make a new schedule. So many mixed emotions. For me, multiple circumstances limited my visiting right from the start. Even now I’m only managing 1 visit of about 1.5-2 hours a week. We talk on the phone 2-4 times each day. He can still manage that. When I do visit, after the initial arrival, his focus is on when I have to leave to be picked up by the GoBus. He doesn’t want to go for a walk, watch TV, anything. The whole trip takes about 4-5 hours out of the day and I’m burnt out when I get back to the apartment.
At the same time he was in the Hospital and being Placed I was sorting and packing, and hunting an apartment. Most widows and widowers don’t face the sorting and disposing of their LO’s belongings until after they’ve had a chance to assimilate their loss a while. It felt as though I was erasing him. My Daughter flew in and in a week we dismantled 29 years of our household into my little 1 bedroom apartment and her storage, with a lot given away or trashed. Between Jan. 15 and March 1 my world turned upside down. I’m still not settled into the apartment. I still don’t have a routine. There aren’t any pictures on the walls yet (working on that). My cats are placed, I have only his, because she was the neediest. It’s work to get basics taken care of. I can do pretty much whatever I want, whenever I want but have few ideas what that could be . Two good things happened in the last few weeks that do give me hope that this limbo won’t last. Twice, and it’s been years since I could do this, I’ve had the chance to say yes and go, spur of the moment. Serendipity. A friend from out of town called and asked if we could get together for lunch. I didn’t have to arrange care, and then week before last another friend asked what I was doing that afternoon. We went to the Casino. Such events are exceedingly rare. Because of my disability transportation must be planned in advance for me to go anywhere on my own. I have more freedom now, but the ties still bind. Eventually , I know I’ll get the hang of this new life. I’ve never liked doing things halfway and that’s what this phase feels like. I don’t know how to be a Wid.
Hmmmm I'm not sure what you mean wolf by "Nikki talks about her expierence purely from the residence" hmmmmm its been 3 years for us, I have talked about our gut wrenching time and the horror of my feelings many times....perhaps you missed all those threads?
I am with Lynn now so I don't have time to reply more, but I will try to later ....
carol what a difficult time you have been thru since placement and before. you are so correct that the radical changes mount and wear us down. the placement alone is enough to send many over the edge, and changing homes and downsizing years of togetherness is alot to digest. i hope you get more of those spontaneus days out. divvi
I have removed the sentence. I meant that much of your writing is about Lynn's experiences in a residence and your experiences of that. I didn't mean to offend by using the word 'purely'.
Wolf, you did not offend me ♥ I was just trying to figure out if you had missed the posts where I did delve into my emotional baggage. Of late it is true that I don't often write about such emotions, but that is mainly because he has been placed for three years now so the feelings have been dealt with, ahhhhh more or less.
I was already overwhelmed and stressed to the max when my Dad took his life in 2008. He was Lynn's best friend and my Hero. Since Lynn had been "sick" my Dad was the one person I felt I could still turn to. He was invincible, my best friend, my rock. When he died I completely fell apart, the shocking way in which he died still haunts me to this day. Couple that with the daily losses of the love of my life and I was living in a state of perpetual grief and deep depression.
But I fought so hard, and I tried for all I was worth. Early 2009, after having my ninth TIA, my doctor told me "it's Lynn or you, if you continue as you are, you will be dead within the year" I was 41. Dying didn't sound too bad to me in truth.
Lynn's placement was the thing nightmares are made of. It was not peaceful or pleasant. I couldn't even come here to write my emotions, I was drowning in misery, it hurt so bad I physically ached. I remember time and time again laying with Lynn and just begging God to please, please, just take us both right now.
It didn't happen, and I remember hands clenched in rage, arms raised to the Heaven's, cursing God for all that He was taking from Lynn, from me. I hated God and hated the world.
I was a stranger in my own home. I felt alone even surrounded by family.
The saving grace for me was that once placed Lynn went from seemingly hating me at home to once again being kind and loving to me. He wanted me with him, we held hands, he kissed and hugged me, he told me over and over how much he loved me. After years of Alzheimer's holding this part of my beloved husband hostage, after years of having no contact as husband and wife, after years of suffering Alzheimer's inflicted abuse, both physical and verbal... he once again loved me deeply. It was not what it once was, but Lord, what a blessing it was to hear those words again - to FEEL those feelings again.
And I remember thinking how cruel God was. Just when I was trying "to let go" He brought back the part of Lynn I missed the most. I also knew it was a gift and thanked God for it, I was a mess of mixed emotions. I wanted to take him back home, but knew he would once again hate me at home. I truly would have rather died than to face that particular hell again.
As much as I treasured having this part of "My Lynn" back, it made his "transition" all the harder. The pleads of please! can we just go home.. the image of him pacing and pacing the hallways while carrying our wedding album.. how he dropped to his knees and cried when he saw me..these will haunt me til I draw my last breath.
Over and over every single day I repeated to myself “ I must love him enough to do what is best for HIM” …And as much as it hurt me, I do love him enough. I wanted to care for him at home, more than anything.. but I just wasn't able to. I felt a immense guilt and the world's worst failure. Every single day was inner struggles within myself. He needs to be safe, he is getting the best care possible..but, I want him home.
I spent a great deal of those first few months on my knees. Just when I thought I would go mad from the grief, he did finally start to "transition". He asked less and less to go home, and found pleasure in the activities there. He smiled and laughed more and slowly I began to be able to breathe without feeling pain.
I went every single day, most of the time twice a day for the first year he was there. Though I loved the time I had with him, it was hard to watch him decline. He started to become more and more lost to me.... lost in that blank stare we all talk about. It is one thing to imagine it, quite another to face it. It about destroyed me. Yet still, I went in every day to try to coax a response from him and to feed him his lunch.
During this time my depression went from bad to clinical. I wasn't suicidal, I just didn't want to live. Seeing Lynn so lost to me, unable to talk... God it hurt so bad! During this time my doctor told me to go in only once a week. I tried that for awhile, but it hurt more being away from him. At least with my daily visits to focus on I found a reason to carry on.....
In Aug 2010 Lynn was hospitalized with pulmonary emboli, I almost lost him. It shook me out of my depression enough to get some medical help so that I could be strong enough to help Lynn. I wouldn’t do it for me, but I did for him. I had to stay healthy enough to help him.
He did recover from the PE, but he was never able to walk again. He continued to get more and more lost to me. About 90% of the time he could not respond with even a yes or no and couldn’t even make eye contact. The more he declined, the deeper I sunk into MY “own little world”. It wasn’t a nice world….
Due to the PE he had to be taken off his previous appetite stimulant because it was believed the medicine caused it. He wasn’t eating well at all, he was in fact slowly starving to death….. And I was slowly just dying inside witnessing his demise. In sheer desperation I asked he be given the Marinol…. And well, you all know the miracle we were given….
When Lynn was able to once again talk to me, express his love to me, say my name… I made a vow that I would not again waste one precious moment with him. And because I knew how very much Lynn always loved me, I also vowed to not waste anymore of my life consumed in the grief.
It has been ecstasy witnessing the miraculous changes in Lynn. For the first time in a decade, I feel sheer happiness. Every tiny little thing that he can still do, means so so much to me. I have learned to take nothing for granted, to take the time to treasure what we do still have. Alzheimer’s has taken vast amounts from us, but it has not, nor can it, take our love. In coming to truly know that. I have found peace. In this world, in the next, our love will remain, that is what has given me the strength to survive.
My daily visits are still the highlight of my day. One day I was shocked to find out that, the happiness I felt while with Lynn, was carrying over into my “new world“ Once I stopped worrying about how I was suppose to carry on without him living with me, how was I suppose to build a new life.. Low and behold, life was happening, I was just to blind to see it.
There have been no grand trips, no major life altering event… just the ho hum drum of every day living. Spending time with my family. Sharing and guiding my nieces and nephews (I am convinced being around children have amazing healing powers) Curling up with my pups…. Just “normal” things! No, it isn’t what it once was, it never will be… but it isn’t all bad either.
I know when God decides it is time to call Lynn home that my true grieving will begin.... But I can’t dwell on those thoughts. I have no control over Alzheimer’s… but I can control how much of me I let it claim. For Lynn and I, I will live my life in the moment, and remember to take the time to cherish what I still have. And forever, I will carry our love with me.
We all need to be a little bit more gentle with ourselves. And perhaps remember that our loved ones - love us just as much as we love them. They would want us to find some happiness. ♥
Nikki...beautiful as always. Do you keep a diary? If not, you should and start writing your book. "An Alzheimer's Love Story"....it would bring so much to so many.
What a wonderful idea for a sticky! Thank you wolf. I still read here often but don't post much as my hands-on experience is rusty due to DH being placed the past 20 months. My situation before placement was a nightmare also: rages, acting out, inappropriate behavior in public, being hateful to me and family, etc. And like so many others here, I neglected my own care to the point that when placement did happen it was a hurried and harried time, just days before I had (unsuccessful) back surgery. My emotional and physical state was so bad post-surgery that I did not see or speak to him for many, many weeks. After a long adjustment period DH settled into the care home nicely and with the proper cocktail of anti-psychotic meds became a calm but alert resident who gives them only minor problems.
The entire time he has been there, several times a day, he loudly calls out my name. And although he still knows me he will do it even as I sit next to him holding his hands or stroking his back. That simple act of him calling my name tells me so many things: he still loves me (which he can and does still say to me), he still needs me, he still relies on me, he still trusts me, and he still is there--inside--somewhere.
Like wolf, I am searching for what I am supposed to do now. Have not made much progress in forging a new life for myself. Much of my lack of progress is due to debilitating pain and its resulting exhaustion. I've not had issues with guilt but depression and worry and stress are frequent visitors to my psyche.
For now I am following the one foot in front of the other method with constant hope that things will improve in time.
Weejun, so good to hear from you ♥ I believe with all that I am that even when our loved ones seem completely lost to us, they are "still in there". They may not be able to communicate it to us, but they are there, and yes... they still need us.
When Lynn was nonverbal it took a great amount of strength for me to go visit every day. It was torture trying to coax a response from him. Sometimes it took hours, but always I did eventually get “proof” that he was still “there”, just trapped.
And now that he can talk and express himself again, I am so grateful I didn’t just “give up on him.” So many stop visiting their loved ones.. At Lynn’s nursing home I would venture to guess about 70% of the residents have no consistent visitors. Some have none.
I DO understand how painful it is to visit, but … well, they still need us. They still need to feel a human touch, hear words of love… nothing rips at my heart as deeply as seeing the abandoned…..
I am so glad to hear your DH still knows you, I know this must bring you a measure of comfort ((hugs))
Judith, I do keep a diary.. But I could never share most of what is in there. Not even here with people I trust, respect and have come to care for. But one day I might write that book….I had titled it Our Journey Into Hell…. But I have now changed it to.. Love Remains ♥
Yes dear ((Jang*)) it was painful indeed. This is the water downed version, if I wrote what I truly felt I fear the police would be knocking on my door.
Today was a fantastic day with Lynn ♥ He is starting to feel better, daily he is getting stronger. Today we were at a music show, and he sang along to “Ring of Fire”… I was singing as well, and making animated motions to go with the music and the words. He was laughing right out loud.
Today, his smile reached his eyes. God, what that does to me….
The tears are always just behind the surface. Every day I struggle to find the good in life. I circle the abyss constantly, knowing full well that any day I can slip and be sucked back into it’s dark vortex….
Today while holding hands with the love of my life…. I saw a butterfly dance magically before us, then land and rest upon Lynn‘s knee. I felt the sun’s healing warmth upon my face. I heard Lynn’s contagious laughter and saw his smile light his eyes….
Yes, a good sticky. Thanks for starting the thread, Wolf. My hb was placed last October after years of the downward roll, sometimes more rapid than others. Major stress in years before placement were all the responsibilities and decisions that had to be made--large and small. Trying to convince him he had to let me clean him up after "accidents," worrying about behavior and "accidents" if/when we left the house, etc., etc. ya'll know; ya'll have been or are on same journey.
So, I admit, I felt relief when he was placed. He never objected; never asked to leave. I took him on rides through the countryside--even by our house. He didn't acknowledge our house. Staff was good to him. I visited him every day. Post placement, my decision/planning was when should I visit? Morning? Afternoon? Evening? The day was still centered on him. What could I do to actively interact with him? My time there was totally his--not like it had been divided when he was home. I volunteered to help with activities.
Then he passed quickly and really unexpectedly. I was prepared for more years in the care center. Now? A new plan for living. Spaces in life to fill. Grieving was done through many years. He'd been a controlling, abusive hb and father before dementia, now I have choices and freedom. I hoed my row to the end.
Gord was very controlling and it took me over 25 years to even partly see that. By the time I wanted to talk about it and resolve issues, it was too late. I think it is hard having the dementia to deal with on top of all these issues that you could never talk about. Now I too have choices and freedom. I still feel the weight of those issues as well as the grief for his loss.
We didn't have issues like that. My father was so controlling I swore I never would be and have kept that vow for over 50 years. But my wife and I had arguments where her alzheimer's was already creeping in and she did some things I thought were breaks in the principles of our relationship. I ragged on her to be honest and even though in right mind I would stand by it - the truth is she was already affected.
I got to talk to my father in the last couple of years. We had long talks and got everything out. My mom had so much freedom and seemed to enjoy those years after he passed; but, she also suffered greatly from his loss despite his controlling nature.
I wish you had been given the chance to resolve those issues; but, you can resolve them in part. Not as a couple but come to some resolution by thinking and talking the whole thing out yourself. It's valid I believe to come to do that within yourself and let it be forgiven, understood, or let go.
In the talks with my father a lot of stories came out of what he went through and how terribly hard his life actually was. His mother was very controlling it turned out and so is my sister. They love - you just have to do it their way or be prepared to go to war forever and they don't realize they're doing it. Most of the time they're frustrated that NOBODY ELSE CAN DO ANYTHING RIGHT!!!!!!!!!
Sorry.
I forgave my father. He was pretty hard on me at times. In his world my life was a piece of cake and I was still wallowing in it. I got to tell him so. He cried. Totally out of character. Or maybe not.
You are now the only one who has any say. And if he were here maybe he would also have been ready to open up. If he could what would he have said and what would you have said? Say it, become satisfied that that's pretty much it, and then forgive both of you and learn to accept what everyone is.
I can't help you with the grief. I would pay handsomely for a single day of feeling genuinely happy. Oh well.
Zibby* and Jang* my heart as always aches for those of you who had other issues to deal with other than "just" Alzheimer's. Lynn was by no means perfect, but he was to me. Jang* I agree, it isn't too late for you to resolve these issues for you. They say forgiveness is freeing, perhaps in time you will be able to work your way through these difficult emotions and find some true peace. ((hugs))
Wolf, Nikki, I have done that to a certain extent. I realize that I was a grown woman and could and should have fought for myself years earlier in our marriage. My realization came from Dr Phil of all people. He asked somebody if they were doing something out of love or fear. That question hit me like a ton of bricks. It was fear. Fear of causing him to be angry and fear of being left with nobody to love me. I was sure that if Gord left me, there would never, ever be somebody else to love me. Now, I am pretty much OK with that. Good advice friends.
jang* - your words hit home. My DH wasn't extremely controlling, but he was to a point. I was never afraid that if he left that no one else would ever love me. In fact even before AD came into the picture I decided that I never want another relationship. Dear jang* I'm sure that there is someone out there who would love & cherish you. But it's up to you to decide if you want that in your future.Like I said, the answer for me is NO!
Hi Elaine, for me, the answer is NO as well. As much as I miss Gord, I am finding enjoyment in doing what I want to do when I want to do it. I went from living my life exactly the way he wanted to live when he was normal to doing the same in different ways when he became ill.
We were together for 2/3 of our lives. I think it is my time now.
Police were here yesterday. One of the inmates (sorry, people locked up in a residence) punched my wife twice and pushed her down. She has bruises on her chin and on her arm and they're going to xray the arm to make sure there's no bone damage.
The police were here to get my signature so they can look at her file because they're investigating an assault charge against the man. I told them I hope he's not charged and that he couldn't possibly have any real awareness of what he did. My thoughts went to his spouse or to the children because they transfered him within a couple of hours to another location where they'll probably adjust his meds and assess him.
Talking to the RN's and social worker, they let me know that it is their opinion that my wife has no awareness of where she is or what's going on. They know I'm struggling with this and they want me to understand. I can't go there as often as I feel I should because frankly I'm a bit of a mess inside. I'm a strong man in most ways but I knew years ago I dreaded this part and for whatever reasons I just can't handle it. The social worker this time said she's dying and she's extremely advanced. I know that. There's very little about this disease I don't know.
My experiences have nothing to do with details. It is grief unable to land. It is reeling punchdrunk in the ring from too many blows where the bell has not yet rung and while your mind explains your vulnerable with your arms down, you don't know where the lever is to get them back up.
I got up at 6:30 and went for a long drive in the country to the picturesque town of Paris along River Road looking at all the places I took her in those few short years we had out here before it became impossible. She always liked looking at the old buildings, the working farms, the winding road through the trees, the hawks and often deer she loved to spot. There's a long walking trail along the river, there are little hamlets along the way, the spring fed lake in the woodsy valley we went swimming in, the ice cream store, the farm we always got her favourite fresh corn from. The sun rising on a new day.
I wasn't sad really. I understood something I hadn't felt before. I brought her to all these places because I'm the explorer. And while I wish she was here, I have to learn to let her go, to gather the memories around me, and to open my heart to the other truth. I'm glad I'm still here, all these places are still here, and I want this
Because what dawned on me when I heard the opinion she's virtually completely unaware now, and that she was assaulted despite the staff's obvious caring, and the social worker suggesting that even though she was still here I was now grieving for her, - what dawned on me is that it's ok not to be perfect, and that when she is finally released from this disease, all of this part inside me will start to find peace.
That despite all the talk and all the thinking I've done about this, and all my beliefs about being inadequate in this part, she really is dying, and I really am powerless to stop it, and it's not far away. I really am grieving for a beautiful life that has been lost already, and it's ok for me to love the life that is left.
The mind and the soul. They have common interests and share the same house - but they are not the same.
Wolf-that was very understanding of you-to think about the man's family rather than getting angry. I remember all too well how I felt when my husband hit another resident. On another note-my husband has been gone for almost two years. I still continue some of our life long routines-like bagels and lox for Saturday morning brunch. Only good thing is that now I don't have to share the lox.
Wolf, I am crying over your post. No. The mind and the soul are not the same.
In the nursing home where a friend has her husband, an aggressive resident knocked another resident over. The man attacked, sustained a broken arm and hip or pelvis. He became bedridden. A few weeks later, he passed away. All I could think of was that Gord could have been the aggressor with the way he got so agitated. I felt so sorry for both families. Both at the mercy of this terrible disease.
It frightens me, this talk of aggression, since that's exactly what my husband (a lifelong peaceful, non-aggressive person,) is being treated for now. Like some others have, he's currently undergoing a weeks-long med adjustment before he can go back to his ALF (where he'd only been for <2 weeks before his problem behavior escalated.)
However, because it's been six weeks since I was his full-time at-home caregiver, there have been some notable changes in my experience. One--I don't have a protective emotional wall anymore. That wall enabled me to ignore the broken heart so that I could just carry on with the needs of the day. After I moved him, it fell down. I didn't ask it to, it just did. Which means there have been a lot more tears and processing of the heretofore repressed heartbreak, but that's probably a healthy thing. Two--I'm starting to look forward at life and I'm thinking "ay yi yi...what am I going to do with it?" It seems pretty lame to me to be facing the probable gift of several more decades of life and not have any clue what I might do with them that will be useful to the world. Sort of scary.
Don't worry Emily. The years left will pass like 5 minutes. A few years (think of Seinfeld and George) a few years (shrug and hands up what? what?)
I'm 92 and I'm getting together a mariachi band and going on tour in Urugauy. The only requirement is that you don't speak Spanish. Also I can't play a note. Should be fun. If that doesn't work out I'm renting a truck and driving it to Santiago, Chile over the mountains. If I survive that I might start an improv theatre there or teach origami. I haven't really decided. The main thing is that I work on my brooding Brando look. I've started combing my hair straight back and I've got a mustache coming in so I'm all set.
I said 92 so that I would be older than Bama. And poof Bama appears.
I'm 61. That bio is up to date.
I will never reach 92 and I don't care because I'm not dying in the next 5 minutes either and I almost certainly have a few years to kick around in.
I didn't want any of this but it's here and I'm taking ownership of it step by step, day by day. I want to thrive in the time I have and I know there is only one impediment to that.
I loved her and I still love her but I am on my own now already in a kind of proving ground (not to say purgatory) where I know exactly what happens. All this saddness and hardship has affected me and like all of you I will mold that into the reality I then live in. There's no other possibile outcome. Well I want to feel good and have a good time while being a worthy human being. That's a few stops down the line and in the meantime I'm having lunch.
I loved my old life. It's not on the menu anymore. I can't save her. I'm not interested in just saving myself either. I want to see how fast this thing can go. I want to see how it handles in the corners. This is my time and I've never been a more developed human being going into anything in my life. Wish you were here but I'll send you a postcard.
Why is it inconceivable to feel enthusiasm for what we have? I have no idea. I'm neither sad nor happy. I've been tempered.
I have not posted here in a while. Since I have posted I have placed my dh in an Alzheimer Unit in a nursing home about 15 minutes from our home. I visit every other day and go get him out sometimes. He has only been there a month. It seems like forever to me. I am not feeling guilty or bad about my decision. It is totally against what I ever thought I would do but it is the right thing to do. He has adjusted so well it is scary. He was loosing the use of the right side of his body but now he is actually using it more. Now I can see what all I did for him. When he was home I thought I was not doing enough for him. Now that I see how he has only himself to rely on it makes me realize I was really doing more harm. He still can't talk or walk any better but he has learned how to push himself around in his wheelchair using both feet. He can't steer it worth a darn but when he runs into things he just keeps turning till he clears his way. He is so sweet and they have named him Smiley cause he is always smiling. He brightens my day when I see him. He doesn't know who I am but he does light up when he sees me. He then looks to see what I have brought him. I always had snacks for him and our boys. He remembers that even tho he doesn't know I am his wife or my name.
I thank you Wolf for starting this topic. I have so many other feelings now that were not even part of the equation until now. I have met up with a friend from 40 years ago. His mother passed away and we began talking again. We were in a relationship but it was mainly for fun...... not a real serious relationship. He drove trucks around the country and was gone alot. I didn't know how he really felt about me but now I do. He lost his last wife 5 years ago and understands what I am going thru. His step father also had dementia and he understands what is happening to my husband. He made the remark to me that my husband was first, he was second, and that would be the way it was unless I stated otherwise. I feel no guilt with us visiting each other but it does not include intimacy of any sort. None. We do both know that there would be feelings if we allowed them. What to do? I enjoy him coming over and having supper, listening to music, really getting to know each other like we didn't do before. Now a relationship is starting from a friendship first. This does not feel wrong. But I am so confused as to what others would think if we started going places together. My youngest son say Heck on what others think. My father that I had is now dying and he would not want you to be lonley. So do what ya'll want to do. This is the son, the only other person that has been helping me with my dh for the last 5 years. His opinion means alot to me. To my surprise he is real understanding with this. I think having his father in the nursing home is helping him accept that this is the end of our life as we always knew it. We will be there for each other thru all of this but for him to understand and accept someone else being in my life in any capacity is real touching. This does not mean I don't love my dh, I love him dearly and always will but I want to live again too. The circumstances that brought me and this friend together again is really strange. He keeps asking me what do I think our life could have been like if we had spoken more back then? We both know what it would have been. We would have gotten together. Is this being silly? Am I being crazy? Could this really be what might be in the plan for my life? I know there is something but I am happy to see my husband but I am really happy to hear and see this friend. I am nor will I ever forget or dishonor my husband but I really am enjoying the company of this man. Wolf,,,,,,I could use your words of wisdom. Or anyones for that matter. Hope all of you are having a great day.
What a surprise post. Glad to see you still alive and kicking even though I still see you on another site. Enjoy your life-only go around once, you know.
thank you bluedaze* for your sweet words. Yes I need to come back and continue with the next chapter of our lives. Wolf has surly hit the nail on the head with this discussion topic. He definitely deserves the Sticky,,,,,,,,
Mammie, I am with your son on this. If I cared what other people thought I never would have married a man 35 years my senior. How grateful I am I didn't listen to them and listened to my heart! We had an amazing life together ♥ So dear ((Nora)) as bluedaze* would say, follow your heart. Just protect it too, as you may be a bit vulnerable right now. Much love and wishing you happiness ((Hugs))
It is so clear how utterly sincere every word is and like so many here I understand everything you said and what you are asking.
It is so rare in life that we are offered this and I so hope that you will take it.
Life has brought in someone who both knows and understands because of his father and his wife. I believe you should open this door with complete honesty and as unreservedly as you can and open your heart to both of these fine men.
You will feel guilty and you will be looked at somewhat which are understandable really. But your son is right. Open this door. I believe that before someone like God and your husband as he was - you will pass all tests.
Thanks for all of the post of encouragement. I am going to take it slow and use this time to come to terms with the finality of my life with my dh. The young man (60 yrs.) is willing for us to take it slow. We are spending time together in the company of my youngest son,,,,, who would know your child would be your chaperone?????? We both feel safer this way since we already know there have been feelings in the past and they are just waiting to surface. It is best we stay chaperoned.......lol...... Again thank all of you for caring and understanding. Life is so tough and then it really gets hard....... I love all of you for being here and I love this site. Thanks to all of you and to you Joan......
Opaque maybe. This is the roost period. What we are, what we were, and what we're going to be are all starting to roost whatever we think or say. We're going to have the past coming in and wanting to know what we want to do with things whether we like it or not. We're going to be staring at our present and may or may not be interested in what we are. And every time we get up to face a new day, the future is also unfolding.
I'm not particularly interested in prose here. I could stand on my head and spit wooden nickels it won't make a bit of difference. My old life has split off and may as well have fragmented because you absolutely will be putting your version of the memories back together in a new way and you are the writer, director, and producer of that movie.
Bitter? Here's that stuff. Sad? Lot's of that here. Angry? Here's those scenes. Lost? Here's a bunch of fears and worries you can use. It's your movie. Nobody else can put it together and you absolutely will.
The memories we choose form our thoughts about things. So what?
It's a lot more than that. In a state of serious emotional compromise where horrible parts of this are still ahead of us; but, we are already alone - we form the starting blocks of our future.
Are you kidding me? Most of us are a mess. It's a sick joke that in this purgatory with our spouse in a home, we're supposed to make something meaningful of a future.
I can. But then I'm shallow. Many are literally in different states of shock. From being a prisoner of being a home caregiver we are released. From not thinking about ourselves for some time there is no end of silence and time. It takes time just to recognize at deeper levels inside what has happened now that we have stepped back from the battles.
I've learned the meaning of the word 'poignant'. Powerfully sad and strange in ways that affects everyone who sees it. Poignant. Put me down for that as describing my life. But it's true. This is really happening and I really am faced with looking at just me, wondering who the heck I really am, and what on God's earth I am going to do.
I've only got me for company. That's a depressing thought. Others may be very interesting people and find that sufficient; but, most will feel the need to connect - to something, preferably meaningful.
My wife stares blankly but has settled down in the place I sent her to. My social worker at the residence said to me today that 'survivor guilt' is one of the most pervasive things she faces and that it comes in many forms of denial. I have it in spades. I get that though.
I should consider seeing a therapist she says having talked to me for 4 months now. And I have been to edges that I'd rather not experience such as not recognizing or feeling like yourself or not understanding the thoughts you're having (like punching X-friends in the face). I'm not afraid of going through this stuff though. I know that as the years pass I will adapt and that time does heal. But I'm also more serious than I was.
I get that I'm long in tooth. I don't expect to turn this sow's ear into a rose. The pain has tempered me and increased my range though. I get it. If I want a meaningful life now, I'm going to have to help myself.
And I'll share one of the more useful things so far. Answer the question: "When am I fully engaged?" Go do that. It's up to me to find the road. It just is. And the only potentially happy things I do are those I open up to and allow myself to feel that (again).