My 44 years of marriage is over.  I have posted here many times before how I have been struggling to keep things together with this man.  I have no fight left in me.  He has made it very clear that he is no longer in my corner.  We live in the same house and share a physical space.  That's it.  My soul mate is no longer here for me.  I have cried, gotten angry, doubted everything I thought I knew to be true.  It's time to face reality.  I have my grandson to raise now and I owe it to myself and to him to get myself together and move ahead together.  I have waited a very long time to try and help my husband to get on board and live out our lives happily together.  Not gonna happen.  I think he is dealing with his own deamons but I no longer have the strength to keep it together.  Raising my grandson in a healthy happy environmental will take everything I've got and I will NOT let him down.  I miss my husband very much but he has already checked out on me.  I will no longer beg and plead for him to be by my side.  I've been very hesitant to post for fear that this may be too personal but I have come to trust and respect my friends here.  If this is too personal then you'll have to let me know.

My dx is being looked at again.  The neuro was concerned by my high calcium levels.  He referred me back to my PCP for further testing.  I have a parathyroid scan scheduled and that should help them to figure out which direction to go in next.  My only hope at this point is that my memory loss issues may be a result of a malfunctioning parathyroid.  If that is the case they may be able to correct it with a combination of meds and possible surgery.  My pcp and neuropsych do not think this is the case but I still want to go through with the testing.  Depending on the outcome my future could look a lot different than it does now.  But I will save that for another time.  For now I am just trying daily to gather the strength and courage I need to get through each day.  I truly appreciate each and every one of you.  You are in my thoughts daily.

--Lynda

It is so painful when the dreams and hopes for our most central relationship, our marriage, is over. I went through this before I got sick but now the terms are different. The stage of my disease dictates that I contain it better and keep the anxiety off his plate. I am continually disappointed and crushed that I am not cherished, but rather am seen as a latchkey Alzheimer's wife now.

 Great that the love of your life, your grandson, is there to love you and be loved. Great that you have the energy and stamina to love him so.

I am so sorry to learn this news, Lynda.  It it challenging enough to deal with a complicated medical problem, but to lose the primary relationship in your life is almost too much to bear. Raising your grandson will be an area for you on which to focus.  Be extra gentle with yourself now.

Iris L.

Lynda, You have set the bar high. I realize that at times I have thought about how this disease is not what I signed on for, but of course, I'm wrong with that thought. I did sign on for this, but I just wasn't looking that far into the future. Barbara is the woman I chose, and she is the one I still choose. Nobody deserves to be thrown away. When I read your post, I hear the devastation. I have to not be that guy. I hope I'm not being snotty or cruel when I tell you that your pain helps me to obtain my pardon from even thinking that somehow life would be better if we were split.I hope you won't mind if I pray for your well being and determination to be the person you need to be for your grandson. If it's true that it takes a village, then this is one heck of a village here.

Blessings,

Chris

Lynda - 

It is not easy to share some of the most private aspects of our lives.

The moment when you quit trying to get someone else to love you...

In my marriage I have had that moment and it was before diagnosis but we now know it was the confusion and visual changes of ALZ.

I suspect this is VERY common and usually not discussed here. My life got so much easier when I realized I had been disrespecting his capacity to provide compassionate care 24/7/365. I asked what he felt he could contribute. Things are much better since I adjusted my expectations. Now my husband knows if he shops, cooks, drives and rubs my aching bones it is enough. 

Your grandson needs you now. How wonderful you are there for him. Is your son making any recovery? We have to close so many doors but only a few of them do we need to lock from our side.

*****

thank you for sharing this, I felt less alone. I also wanted to be my husband's Girl Friend forever. One day I gave up hoping for that, like you described. You just let go.

The surprise is my ability to understand the situation and not be hostile. Our spouses and loved ones go through their own grieving for what they hoped for - I suspect for the men stuck caregiving when they had expected a wife to be caring for them in old age and are scared and angry.

Life is what happens when we are making other plans.

Love you and appreciate you being on the boards.

(((((((((Lynda)))))))),

You held on as long as you could and did your best in trying to rebuild/repair the relationship with your husband. Coming to the realization that it's time to let go of our dreams and hopes for a relationship can be very difficult to accept. If you make this all  about you and your needs and grandson's needs it can also be freeing. Please take that time you spent on thinking of his needs and put it all on you and your needs. Time to dream up a new life and what that'a going to look like.  

LYNDA,

My heart goes out to you and all the others who are trying to deal with this disease and a marriage in name only.

Knowing the pressure one is under in both situations, it would take a super-human person to successfully manage both.

My suggestion would to inquire of counsellors who are familiar with dementia (ask at your local Alz. Office) if they would also feel competent walking you through this next phase of your marriage. If you are thinking divorce you'll also need a good divorce lawyer and one who knows the ramifications of your current diagnosis in case hubby would contest your action.

We have to do all we can to cut down the stress in our lives. You have thought out your situation.  

Do keep us posted.

how are you doing?

hope to hear from you soon, hugs to you and your grandson - 

****

is it nature's way to load more on people when they are already carrying a heavy load? I hope support is coming, sharing the burdens.

Your love for your grandson is something I can feel from your words. You are both so fortunate for each other.

Dear Lynda, yes, how are you doing?  My heart went out to you when I read your post.  Your pain was evident and could be felt while I was reading your words.  

Alz had wonderful advice and perspective.  I understand that you have quit trying to get support from your husband and that's okay and quite natural at this point.  We all do what we have to do to cope, but please don't lock the door from your side just yet.  He may still come around.  Do not give up all hope.  As alz said, this is a big shock for him as well and it may take him awhile to get his bearings back and find the ability to deal with his emotions and reach out to you too.  

All you can do, is what you are doing.  Take care of yourself and your wonderful grandson.  Sometimes things have a way of turning around when you least suspect it.  Hang in there.  You are brave and strong.  So proud of you.

Keep us updated...we're here for you.

Much love, BlueSkies

I love and appreciate all of your support. It helps me get through each day knowing that I am not alone.

My very best to all

--Lynda

Hi Linda,

I am new to this website.  I am so sorry for your pain. We are all here for you and you are in my prayers and thoughts.

Blue Skies said "sometimes things have a way of turning around when you least expect it"...

this whole experience is about learning to let things go while holding close, and yes to Lynda about boards being a life line.

hope things are settling down into new routine and look forward to learning more from all of you.

Lynda,

Do make sure you protect yourself legally. Hope you and grandson are doing well. Please check in with us when you can.

Good news to report.  Permanent guardianship of my grandson was granted last week.   YEAH!!  I am now just trying to maintain the status quo until the doctors can get my health issues figured out.  Then I will be able to know what direction to head in next.  I greatly appreciate all of the concern and support from all of you.

--Lynda

--Lynda

Mish - sharing your story really  helped me feel not so alone today.

I think most people are not going to be very good caregiving to an Alzheimer patient because of what they sometimes wrongly believe the illness means to us and them, and more because people don't know how to take care of someone who is becoming incapacitated.

Grandmalynda! I am honored to know you and admire you. Your love to your grandson is beautiful.

I do not think there are many "great" caregivers. Why would there be? It takes a lot of learning and where is that offered? The learning takes time and not every caregiver has the time it takes.

Support group? I went to 4 different ones and listened to people relate how their week went. I think this is valuable but how about a few handouts with some educational stuff.

Alz Assoc? The hot line can be wonderful but who tells you about it. Not the Dr. The Dr does not give you anything. 

The association here is in a beautiful free standing building. They have three books in their library and no book list to hand out. They did not even know about the message boards.

The biggest regret that I live with is that I did not have the education that I have gained over the past two years back when I was a caregiver.  Much of what I learned came from this particular forum.

I am still working on a "help" list that hopefully the AA and Drs will have on hand.

Dear jfkoc,

I was saddened reading your post. Years ago, when I was a member of the Early Stage Advisory Support Group, we wrote a handout for doctors that did what you hope to do.  It was distributed to doctor’s offices nation wide. But what happened to it after it was opened? Round file.  Who knows.

I do know that since then, National has had an outreach program for doctors.  Can you educate professionals who know they know it all?

Is your local affiliated with the National Aliz. Assoc?  Most have a much larger library and lots of hand outs.

Support Groups, I feel have to cover both education and giving participants time to talk.

And yes, some of us, most especially those of us who are PWDs are apt to find fault with some caregivers.  Yes, I agree all caregivers should train themselves in the best way to handle a PWD.  However by the time the average person is diagnosed, that person is in the middle stage of the disease and all of a sudden, the Caregiver is plopped into that role. Caregiving is a full time role; and the caregiver has neither the time nor the energy to learn. For those who do learn about this site or local support groups, help is available. What % of caregivers would that  be?  I’ll bet a very small %.

Mish, I’m so glad you were able to leave.  You might want to connect with a Domestic Violence office in your area for further help.  1−800−799−7233 .

Lynda, I thought you had custody of your grandson and your husband was gone.  ?????

Yes, our office is part of national. 

I don't feel that there is much complaining by PWD about caregivers. Sometimes that we do not understand and that is true. 

Do you have a copy of your handout you would share????

Can you educate those who know it all...lol. No so maybe I will handout to caregivers more directly through support groups and seminars. 

It is changing!!!!!!