I am not in denial, I know Alzheimer’s is a terminal disease. I know Lynn is declining. Still, I was blindsided at Lynn’s health care plan meeting yesterday. The first thing I was I asked is if I had Lynn’s funeral arrangements all made. I answered no, as far as I could emotionally go was to secure his spot at the VA cemetery. Then I was told it was time I make those arrangement.

They said it nice, with sympathy and compassion… but still, I was stunned. They then laid out all of his reports for the last 3 months … there in black and white, laid out all across the table was detailed information on how aggressively he has declined. I knew he was declining, but to see it all like that, detail after detail, wow, overwhelmed me.

Last night I read the “So what can your LO do?” and I just started bawling. He can’t do the things he could just 8 months ago, just 8 months!! The puzzles have long since been put away, he can’t even begin to understand what they are. He didn’t know my name 8 months ago, but he knew his own… now, he doesn’t even know his own name! He was getting up to use the toilet, now he isn’t able to….. He use to be able to feed himself, now he has forgotten how and needs to be fed by nurses…… just every single aspect someone could decline in, he has…. And significantly.

Again, I knew these things… but I took them in day by day, to have it all summed up like that, how fast he has declined in such a short time, just floored me. They told me of course they have no way of knowing if he will level off or continue to decline….. If he will remain stable for a year, or have an “event” and be gone tomorrow………… but they said from their experience, funeral arrangements need to made and put in their files.

Well damn! I am just not ready for this, but I have to be. I spent the night looking up how to begin the process….what to do and where to do it. God, I am depressed. I have changed these past months too… I did have hope, and I had an upbeat attitude. I always tried to concentrate on what he could still do…. Harder and harder to do as I watch helpless as I lose more and more of him…………………..

Ice cream cones are excellent! Bubble wands help, too. Did you ever try to dip the wand in the soap solution and make bubbles only ONCE? Most of us have to do it several times...and then one more time. I play with the bubbles with my dog every day (he is mystified by those wierd balls he cannot catch)..and just as the bubbles drift and float...and then disappear...I pray that one day they will represent all the worry, stress and heartache I've felt the past few years. Bubbles are good things.

Re: Funeral arrangements...I called a lovely local funeral home before my DH died, and the sent a very nice gentleman to our home. He got the vital information, date of birth, where, Social Security information,...Long ago he had purchased his 'slot' in the Columbarium at our church, so we knew cremation was his choice., no viewing, and from then on, it was simply, 'when the time comes, call us'.

That's all there was to it,..for me. The day he died, they came to our home, and very quietly, gently, took his body away. They asked that all of us leave the room and let them do their work, because they didn't want our last memory to be of them taking his body out the door.

And if you change your mind over and over in the months to come, so be it. You've at least got the worst out of the way. When I went down to the funeral home the day after he died, I was numb. I was so glad I didn't have to remember dates, numbers, etc. on that day. They had a folder set up for my husband and only had to go over a few brief details and "pay".

Nikki, I am so sorry about Lynne, and that his decline has been so rapid. You are not alone. Besides Divvi's husband, my husband is also declining to that point. I wrote several months ago about my trip to the funeral home and making the arrangements, and I've bought and paid for the memorial, which will be made once he passes away and they know the date. I bought a double memorial, so they can add my date later. A lot later, hopefully. I also wrote his obituary, and I may modify it, but I put in the things that I knew were important to him and to me, in case I didn't think of them when the time comes.

The only reason I knew to do all of this, was having gone through it when Diane died last summer. It is so hard to accept their deaths, even knowing that it is coming, and knowing we lost them long ago.

May God watch over all of us and may we be strong enough to do what we must.

Love to all,
Mary

I had made most of the arrangements for both of us years ago. Last year my daughter and I finallized Bill's. When the terrible time came I fell apart making the final-final arrangements. Seems there is almost always something more that needs doing. I was worried about writing the obit and found it had already been written with information I had given the funeral home. I brought a happier time photo of the two of us and the funeral home scanned only Bill's picture for the obit and it was beautiful. They gave me a beautiful large color copy to frame When I am up to it I will do the same for myself. Also plan to use my half of the same photo.

NO where is it written that an Alzheimer's Patient will die ONLY when they reach Late Stage 6. I am sitting here, living proof of that. The doctor said when and if the disease touches the place in his brain that is the central nervous system, they can have a massive stroke..brain stem infarct..and that's what they think happened to my husband. The night before the stroke, he was up, talking and ate a good dinner. Follow Joe's advice. It's so much easier early...because I have NO IDEA how I'd have managed to do all that was necessary after the fact. At least, not very effectively.

Divvi, just wanted to let you know that I'm thinking of you with love and sending you and your husband my warmest thoughts and prayers

thanks friends. its always much appreciated!
after the round of antibiotics seems DH has bounced back again. (til next time, and there will be a next) up/down. playing with our emotions on a constant beat.. :(
AD is relentless.

divvi

(((((((( HUGS )))))))))) divvi. I've missed seeing your posts lately. When our friends miss commenting we know things are not going well.

Dear Nikki - my heart breaks for you. I am so sorry that you, and eventually all of us, have to go through this. To see in black and white the decline must have been devastating. I live with my DH everyday, and I don't notice it so much, but people that only see him occasionally are sometimes shocked. I think you should take the advice of dear Lynn's health care providers, and do as much as you can now. Like Nora said, there will still be things last minute, but ease your burden if you can. Big {{{hugs}}} to you. And divvi - same to you, you're both in my thoughts and prayers!

Thank you all so much.... yes we had "the talk" long ago.... but knowing and doing, are two very different things. I felt it only fair to tell his family, I do NOT know where I found the strength or courage.... I was saying things almost like I was on auto pilot...and I said some things I have been keeping in for far too long. <shocked face> I am bitter and I am angry. and I have held it in for far too long. So when I said that it was Lynn's wish to not have a funeral service, and that I intended to follow his wishes.. I was asked, "well, what about people who want to pay their last respects?" ..................and I lost it.

I told them the time for his "friends" and his "family" to pay their respects to him would have been while he was alive, when it damn well would have mattered!! Except for one of his sisters I feel totally abandoned by all of our friends and his family. That even if he didn't know them, their support would have meant a great deal to me! That if one more person- family or not- told me "but it is too hard to see him like this" that I swear I could not be held accountable for my actions. What is wrong with these people!? He is the love of my life! I have been with him since I was 18, we were deeply in love and we spent every single day of our lives together. How can they possibly think it isn't hard for me?

I had originally wanted everyone’s opinions, and like always I wanted to make everyone happy. I changed my mind right quick.... in this, the last goodbye, it is going to be about Lynn and me. It was always he and I against the world. I am going to honor his last wish. So, I started telling what was going to happen, instead of asking what people wanted.

I have started the process.... accccck. He is going to be cremated and I picked out the "package" and the urn..........He will be buried at the state Veteran’s cemetery and his plot is secure, and the plans for the graveside service and honor guard are all in place......Mother of God! This is so hard...... They want me to write down the basics for his obituary now. The guy was so sweet and understanding but he told me, you can hardly speak through your crying now, imagine how hard it will be when it happens. Take some time now, collect your thoughts and write some things down. It is an excellent plan, and I see how logical it is..... but , but, but.....

((Divvi)) ((Mary)) ((Ehamilton)), I hope it isn't awful that you helped me feel so not alone... I wish I could change this for all of our spouses!!!! But somehow, it helps to know others know just what I am going through.... no one understands, just no one!! except you all here ♥ I feel for all of you, big hugs of understanding ((hugs)) ♥

Nikki---you are doing wonderfully well in what you've already accomplished of your planning. Work at the Obit. a little at a time. You'll get it done.
Have to say, you're hitting the wall with the relatives wants vs their true caring rang bells with me. I don't feel quit as uneasy/guilty because our (my daughters and mine)plans are going to ruffles lots of feathers. Texas Joe said I'd coined a new acronym, whe I wrote politely my daughter's response when I pointed out to her that our plans wouldn't sit real well with some relatives, how did she feel about that? She shot right back: "They can K** M* A**."
I'm thinking maybe we need to embrace that attitude a bit more frequently on this journey. I know several of my hardest times so far were when I was trying to explain and defend decisions and care for DH at the same time. Their thoughts, feelings, etc. were not my responsibility then nor are they now.
Our plans honor him and the love we shared with him.

Oh dear friends, bless you all. Nikki, you are getting it done..Bravo! I know how this journey ends. I've felt incredible saddness to
visit here and see more Stars of Honor, and still, the stark reality of actually coming to that point myself,just leaves me dumfounded. I also am too close to see things of progression that my daughters can see when they visit every other weekend.
I'm ready for rest. Ready for relief, ready to have more help with DH's care and 'think' I'm ready to change our way of life here to one that provides more help and security for us both. THEN I think if we just don't do anything drastic we'll be ok. We'll keep this monster at bay. DH is ok sitting here in his chair. We won't move. DH is getting along fairly well. We don't have to do anything RIGHT NOW..BUT the fact is that he's up at all hours of the night going outside and the bells on the door aren't always loud enough to wake me up. The monster is marching on whether I want to admit it or not.

Having you to share the way to proceed about these final things is sobering but so helpful. Sending hugs of thankfulness for each of you.

My DH has always said he doesn't want a service and I intend to abide by that. The only one who would raise a fuss (to put it mildly) is his sister in Ohio. We made our arrangments several years ago and will be cremated. Everything is paid for except for the obituary in the newspaper and I won't be making that a long one. I've read stories where people have called the survivor claiming they are owed money. A lady in our church didn't have a notice in the paper when her husband passed a few years ago for that reason.

I made our arrangements after finding out about the AD. Most of the arrangements were made over the phone except the furneral which had someone come to the house in order to sign the papers. At that meeting I was told about immediate buriel. That's what we opted for - they take the body to the place to be buried and bury at the first available time. We have a double decker grave. We believed few if any people would attend a funeral so why pay the expense. If they didn't care to see us before we died, it did not matter after death. So our casket, funeral arrangements, and buriel are all paid for. The casket is what gets people as they feel guilty and choose something really expensive (My mother in law did this). All I have to do is the headstone now. It is truly a relief to have it done. My dh would not do any part of this so I asked him a few questions and then made all of the arrangements at one time.

After 8 yrs of living with AD, I feel like I am living with death on a regular basis. Anyone else? Now we are dealing with both incontinence. My dh is bending over more and not eating as well on his own. He is also sleeping more during the day. The other night I woke up and started crying and couldn't stop. Guess I was scared and feeling sorry for myself.

So glad for the website where no one is offended or judgemental. Thanks.

Nikki, my heart is with you and I know how difficult it is to be making the final arrangements while your beloved Lynn is still with you. I have made the decision not to notify dh's family when he passes because they have chosen not to even call him much less visit. I will make his final arrangements without consulting or notifying his family, conduct the services as we wish and then notify them when it is all over. I refuse to give them an opportunity to say a final goodbye when they can't find the time or "have the courage" to visit with him while he's alive (he would even know/recgonize them now). My sister has advised that I contact our elder law attorney just to make sure they can't some how come after me for not notifying them.

LFL,
I don't know that I would even notify them when it is all over. I know I sound bitter but I have even thought of not putting it in the paper I am so put out with family and so called friends.

What a difficult situation we find ourselves in. I have just caught up to this discussion and, as usual, I find it very helpful.

I have been putting this off because I just don't want to do it. Within the last two years, I have had to take my wife's name off of everything (all financials, home, car, and on and on). This has been hard for me to do because we worked together for 50 yrs and scraped and saved and shared and I had to take it all away from her. I feel like I have made her a non person. She owns nothing, has no say about anything and is not (can't be) asked about anything. I read recently that this disease reduces our lifetime accumulation of 'things' to what we can put in three dresser drawers.

Now, I need to plan and pay for her funeral and it just seems like that is the last straw. I will have completely destroyed her and she is still the love of my life. Anyhow, I am looking for help from medicaid in the future and this is part of the 'spend down'.

I wish I had the back bone like some of you have, but I just don't.

Thanks to each one of you for expressing yourself.

Dean, you have not taken anything away from your wife. This disease is responsible not you. You have loved her and taken care of her the very best that you can and that is all you can do. I wish I had the words to say that would bring you comfort but know that all of us love you and give that lovely wife of yours a hug from me.

Nikki - I am so sorry to hear what you must do, what we all must do. Yet, I see how different we all react and different circumstances. I did not expect DH to die, the day before he'd eaten, I was prepared for years, but not prepared when it happened. When the ambulance was going to leave, they suggested I wait outside, but I wanted to be w/him and I walked with the gurney until the ambulance left. Yeaars before, we had been to a Neptune funeral and I thought it was beautiful and fitting, but DH said he wanted to be in the ground and that was that. So I went with his wishes, our children went with me the next day & everything was easily arranged, including my spot with him. We each wrote & read personal eulogies, a friend taped 'Slow Boat to China' our song, and that played. I was never able to take his name off of most things, it was like I'd have erased him. Nor did I give away all of his clothes until several years later. Thankfully, I was in charge, my life, my DH, I didn't have to think about anyone's feelings and my children were always there and spportive. I will think about you Nikki and the others here in the same spot, I send you my cyber support and hand to hold. We all must do what feels right for ourselves, as it has been said, everyone else can KMA.

Dean, you demonstrate backbone every single day you care for your afflicted wife. You're a good man.

Nikki, I just read your post. I am so very sorry you are going through this. My hubby and I made our funeral arrangements years ago....what a relief to get it out of the way. We did the prepaid cremation. If you will read my update I am losing my husband too. He has declined a lot and like you I have been grateful for all the things he can still do but I know that will change. My heart goes out to you...I am praying for you and asking God to give you peace, comfort, guidance, and strength. May God bless you!

This is a heartbreaking but necessary discussion thread about what to do.
My DH, always one to look down range, before his heart surgery in 05 put a big folder of all the important papers and names and phone numbers in a safe " just in case the BigO fleas the scene".
He always wanted to be at Arlington National Cemetery but after the latest caper there with remains being moved without notifying family and other admin SNAFUs ( FUBARs for Army) I am not so sure about that now..even he isn't....I am more inclined to keep him here though I would prefer a Catholic location but there isn't one here...but one area has a beautiful garden for vets..so will have to think more on that..
I mull over in my mind what to say in an obit too....It is too sad to think about at times but it does creep in to mind...

My Mary has been declining rapidly since she entered the nursing home. She has forgotten how to swallow and they have called in hospice. As part of spending down for Medicaid, I have prepaid both funerals and even have a plot with a marker that I can drive by any time I want to. I intend to donate her brain to Hopkins for research and so I can get a final definitive word about the diagnosis. Those papers are here and the funeral home has been advised to take her there first.

I have been going through all of our old pictures and have been making a video that we can play at the viewing. It is a slide show about six minutes long and goes from two baby pictures through our wedding, the kids, our trips, and ends with one of her in a geri-chair. There is very little that I can actually do for her any more. Preparing this tribute is about the only thing I can do.

I know none of us is alone in this fight. Altho My DH is not (I imagine) at that point yet (but who really knows) I appreciated all the comments and good advice that everyone gave. Nikki, God Bless you. You too Divvi and EHamilton. And for that matter, all of us who will be handling this sooner or later. My mother passed of colon cancer, so we both knew she was going. We should have taken care of it. Fortunately, she left copious notes for me as to where to go and what she wanted. down to what dress she wanted to wear. I so appreciated the fact that she had made it as easy on me as possible. We should keep that in mind for ourselves too. Not to leave our kids with not knowing what our wishes would have been.

I did the same Elaine. I made our arrangements a couple years ahead of time and would make timely changes on my computer copy as a grandchild married etc. When death came I called the Funeral Home and faxed the new copy to them and everything was done over the phone. I didn't go in until the evening of the viewing. Much easier on everyone.