I come here and lurk often. Today, as I am feeling so overwhelmed, I find myself posting to this compassionate group.

My name is Nikki, I am 41, I am and have been -the sole care provider for my husband Lynn.
I would like to talk a bit about my husband, He has Alzheimer’s and it slowly, day by day, inch by inch is stealing him away from me. It is just ripping my heart out. We have been together since 1985 when I was just 18. It seems like such a long time, but so short too. I can’t imagine a life without him. Though I am already grieving daily for the parts of him, of us … I have already had to say good-bye to.

I have been disabled since 99 due to neurological issues.
We went to my neurologist for my check up last Monday. We have a very close relationship, and he helps in the care of Lynn as well. My doctor went over Lynn’s test results from the week before at the VA clinic. In just 6 months, his cognitive thinking test has changed remarkably! He could not subtract 7 from 100. He drew a clock with 15 numbers. He could not recall family members, major life events etc etc.. most of these things he could do just 6 months ago!
I was just SHOCKED. My heart is breaking.

Monday, in the kindest way possible, my doctor told me “ something you need to know, and keep in mind… Alzheimer’s is a terminal disease. As such, if he develops secondary conditions, such as Pneumonia, or infection for example… most doctors will advice you to not treat him… a word you may recognize is Hospice.

My reaction……OMG!!! Am I hearing what I think I am hearing???? Are you saying, if he gets sick,
I am suppose to refuse treatment so he can die faster???!!

I of course starting bawling! With tears in his eyes, as he cares deeply for Lynn …. He said yes Nik, that is exactly what I am saying. He said it is “standard medical practice” with terminal cases. And in cases such as Lynn’s where the Alzheimer’s is so severe … it was the kindest thing to do. He said it is only when family member can not let go, and insists on treatment , that they would treat him. I know he said this in love, he has seen us through so much.

I am not as paniced as I was on Monday, as his body has not started to decline as drastic as his mind is. The neuro said his best guess is that within the year, he will be in stage 7. At first I freaked out! If he caught strep they were going to let him die!!?? Now I know as the strep is NOT terminal, as his POA I do have some say on his treatment. But still, that he has decline so badly, that the need was felt to tell me he is terminal - about hospice....

On a positive note, Lynn has also had sundowners for the past 3 years.... due to the stress of being his sole care provider last March I had the first of a series of TIA strokes. Finally after over a year long battle I have been able to get him medications, the same medications every nursing home in this country uses... to help with his moods, night pacing, aggression etc etc ...so I can keep him home with me!!

He started a low dose of Seroquel. He has taken it only a few days… but it has been a God send to us!!! He now sleeps through the night so peacefully. Whereas, before, he was pacing the floors at all hours of the night. The best way I could describe is it was like he was uncomfortable in his own skin. The aggression stopped, as have the explosive outbursts. It is helping with his day time moods as well, perhaps because he is truly rested?

He now again has his loving personality back!! The other morning....*crying* I heard something I haven’t heard in years!!……”well hello there angel face” It brought me to tears I was so happy.

OK, I think I have shared enough.... for now LOL . Thank you for listening, Nikki

Dear Nikki: We know it was not easy for you to write what you heard from the doc, it is a decision many of us have had to face, but from experience, I think most people on this board will say that the doc is compassionate and trying to help you the best way that he knows how in this devestating time. Too many docs are not as forthcoming and it makes things so much harder for the caregivers.

You are only 41, so relatively young. You must take care of yourself. My dear husband (DH) and I were also together at 18. Stay with us, ask your questions, vent and cry. You are not alone. You are with people who truly understand. We will help and guide you, hold your hand, give you hugs. True, it's all in cyberspace, but you'll feel it all, really, you will.

Betty, your reply made me cry. Thank you!

I do know my doctor was trying to help me. I knew something was up... When I got there he took my hands and said, today no tests. Today we are going to talk about your spirit, and how you are going to handle what I am about to tell you...... *Sigh* though, if I HAD to be told, I am so glad it was him who told me.

His VA doctor has not been as kind. I want to keep Lynn home with me! I just wanted some tools so I was able to.
This VA doc said, he has AD, he belongs in a home, and you better resolved yourself to that fact. EXCUSE ME??
I just couldn't believe I went for help, and that is what I got. That was 3 years ago, needless to say, I don't take him there any more.

Right now, my biggest problem is that I know I need a break, but I see no way to get one. Though he has indeed declined, he is still "aware" enough to know he needs help, and resents the hell out of it! He refuses in home care-day care etc. I just do not have the heart to force these things on him. Later when he sadly does get worse, I will be able to bring in help, nurses and then later hospice. I figure, he will be gone before I know it... then there will be TOO much me time. Thanks again, Nikki

Thank you trisinger, for making me feel safe here. I do love him so, and do need to talk. There is a 35 year age difference , but we are indeed soul mates. So now, I am 41 and he is 76. At 18 the thought of Alzheimer's never entered my mind. But, even with AD, if I had to do it all over again.. I would! In a heartbeat.

He is the love of my life... pure and simple. Thank you again, Nikki

Thank you for the welcome and support Starling.... I have felt so desperatly alone these past years. It is nice to finally have a place to safely share about the care of a spouse... it is so different than the care of anyone else isn't it? I loved my Grams so much, but when it was time to let her go, I did so easily..... it was her wish, there was nothing that could be done. I held her as she left this world, and felt honored to do so. But this, this is so different!

This group is indeed wonderful and has already helped me more than all the others combined, in just one night!! I am grateful to Joan for starting it, and to all of you for opening up your personal lives and sharing.

Having said that, I also have to say I am scared to death!!!! Most of the other sights are more about should I put mom in a home etc etc.... here - I am finding the same worries I have! Though I find ALL the posts helpful and compassionate even... the truth ... about what will happen to Lynn... what you have all been through, and are still going through... Lord I could just vomit for the knot in my stomache!!!!

It is odd this need to know, forever looking for the answers, for what their are no answers to!!! I wonder why I torture myself this way, yet I can't seem to stop. Damn it I want to know when he will progress from late stage 6 to 7... I want to know how much time we have left. Unreasonable maybe, but I can't seem to help it.

I can't imagine a time when he can't say I love you, or even go to hell for that matter! I can't imagine him laying in a fetal postion for years. I can't !! I wish to God I had never agreed to be his POA!!

My Dad was my back up on all of Lynn's papers.... to make these hard choices for me when I couldn't.
We thought it all out......
In March, my Dad took his life... as you can imagine my life has been turned upside down. I just lost my Hero.... and now I am to face losing my husband, my life, without my hero??? I just don't know if I am up to this! Of course I know none of us are.

Well now I can't see for the crying, but I thank you all, and I will be checking back often!! I am so glad you are all here, thank you for welcoming me, Nikki

Nikki: My heart goes out to you. Age differences is something a lot of us face and it is strange when you are both well and happy it never seemed to matter. I am one of the few that has an age problem in a different direction. My DH is 61 and has been having problems for probably 5 years. I am 74 and in good health, Thank God. One of my major concerns is how long will I be able to take care of him. He has sons but they aren't able or willing to help and no one else. The stress of it all is getting to me and my daughters are worried about me.
How great it is that you have such a wonderful doctor for you and your DH. Hang in there and you will find help here...I couldn't make it without this site.

I am going to do as someone suggested, and at least for today.... not keep reading. I will be back tonight or tomorrow. I just threw up several times! I just can't imagine the hell that is coming..........

Welcome Nikki, you are not alone on this journey. We are here to help and comfort each other. Thanks to Joan we have a place to feel at ease with each other, since we all have that unique bond between us. Our DH or DW.
You will have to find some respite for yourself. It took me a year to see the light. My DH was not very happy to have someone else besides me in the house to see to his needs. But he adjusted nicely, as long as I'm not gone more than 3 or 4 hours at a time. Which is ok by me, that is long enough for me to recharge my batteries so to speak. My DH is in stage 6 and he has been put on Namenda three months ago and I can see noticeable differences in him. We were even able to take a trip to Texas and he was just wonderful. I couldn't believe my good fortune. One just never knows what to expect. Come here often and you will feel much better.

I can only imagine the shock to your system. I remember the day my husband's dr. told us he had a rare type of cancer. We both came home & cried. He had never seen me cry, nor I him. Believe me, no one here cares about age differences. You are very fortunate to have found your soul mate in this lifetime, which is more than most. Hang in there, you have lots of people to hold your hand.

Nikki,

Welcome to my website. I guess most everyone has said it all before I got the chance to post, but I want you to know that what has been said is absolutely true. We can all relate to each other's struggles. The motto of this website - "Our Issues are Unique" was chosen very carefully, because I believe so strongly in its meaning.

I hope you will take advantage of all of the information on the home page - www.thealzheimerspouse.com - the side topics are full of valuable information, and in the "previous blogs", you will find much you can relate to. Take your time. It is difficult to digest all at once, especially since the diagnosis is new.

If you read nothing else, go to the home page, and scroll down the left side for the picture of the woman in the life jacket - It says "Help". Click that link for "Understanding the Dementia Experience." Just as ASY said in one of the above posts, it is the best. It helped me more than anything I have read.

joang

Nikki, love, THE HATE IS FROM THE DISEASE, NOT FROM YOUR DEAR HUSBAND!!

Hi, Nikki, and welcome to our group.

My darling husband is 19 years older than I am. He turns 77 this week. We've been together almost twenty years.

I am sure that your discussion with the doctor was horribly shocking, and terribly painful. Yes, AD is a terminal illness. It is always a terminal illness. I gather that your doctor realized you did not know that. He was simply trying to make sure you understand that AD is not like cancer -- right now, there is no cure, nothing can be done except, sometimes, slow down its progression. Your doctor has no real way of knowing what WILL happen to your husband -- every AD patient is different. He is trying to prepare you for what MAY happen. Your husband may be declining at a rapid rate right now, but many AD patients do that and then hit a plateau and hold steady, sometimes for a long time.

I'm sure he is also very concerned about your health, and wants you to be able to consider some of the types of support that are available to help you care for your husband. He wants you to become comfortable with the idea of hospice, NOT because death is imminent for your husband, but because AD patients can -- and should -- be started on hospice much earlier than patients with other diseases. When your doctor feels hospice can be justified for your husband, it will be a great comfort and help to you. It is not anything to be afraid of. They will help make it possible for you to keep your husband with you, and make sure he gets the best care possible. As bluedaze said, hospice does not mean no care -- it means the most compassionate care, to keep him as comfortable as possible.

We've had some interesting discussions about the earliest signs our ADLOs exhibited, if we'd only realized what was going on at the time. I consciously noticed very strange behavior in late 2002, but of course, it was just once in a while. I started becoming alarmed perhaps a year later, but my husband insisted he was fine. He was not "officially" diagnosed until mid-2005. But once we'd started talking about possible symptoms, I realized my husband had shown some of them many years earlier.

ASY is right, "dementia" is a symptom, not a disorder or disease. Many different disorders, including Alzheimer's, cause dementia. Yes, the doctor did a lot of testing so he could be as sure as possible which disorder was causing your husband's symptoms -- different disorders require different types of treatment. You are fortunate that the doctor did this ... not all of them do.

Several of us have lost former husbands to other illnesses -- my first husband died of cancer. You will find that you will be able to give your husband the love that he needs, as long as he needs it. You have already shown that you are an incredibly strong woman. You are just overwhelmed right now, because you are trying to adjust to what your doctor said, on top of your other sorrows. And we will be here to help you.

Thank you sun and met

I think what frightens me is all the papers he made sure he did before all this happened.
The living will , POA etc... they all say things like, no feeding tube etc.. but every single thing also
says, if he is terminal he wants no measures to save him. In his own hand he wrote "my wife and family come first, their comfort. Take no measures at all to save me if I am terminal"

So that scares me! As he is terminal, but not what I imagined terminal to always mean. I assumed it meant death would occur soon, not something like AD that can last for years. So I AM nervous, about what my role will be in his care. What choices I CAN make. Can I go against his own words, to do what I want? I am thinking I will need to speak to a lawyer.

And yes, our doctor is a close friend too. I think he knew when he told me in 05 that it was fatal, that I had blocked that out. What I chose to hear was he would die of something else before AD. I didn't listen any further. We are blessed to have him in our lives, and I know he will there for us each step of the way. I thank you all for your help and support! Nikki

Miss your little photo, how did you do that Nikki? We are all afraid.

Nikki,
I think they call it "caregiver's dementia". It's not easy thinking for 2 people!
PatB

LOL Pat, I was just floored! I would have lost the bet for sure.

Ok Val will do....
Val, at the top of the page, by the search tab......go to account
there is a place to add photos and email etc
TheAlzheimerSpouseMessageBoards
Discussions Categories Search Account

Sunshyne, Thank you very much for your reply! My dad was my alternate, as I mentioned he passed in March.
I have talked to Lynn's son, he said he would be Robin to my Batman. That we had to trust we would know when
the time to let go was clear. I did say I did not want to be his POA, I didn't want any control over these things!
His son put things in a different light for me, I am at peace with what I will need to do, as I will do it out of pure love.

Reading some of your heart wrenching stories, when he reaches the end stage.... I am thinking I will be praying
he does get sick. The hell of what some of you have faced and are facing now, I can't imagine. You learn from others...
What I have learned is to stop worrying about the "little" things, as they truly are little, compared to being faced with that
final good-bye. My heart goes out to all of you.

It is a wonderful book. And if you want a hard copy you can buy one (or a dozen for that matter). It really explains all of the hard choices and when to make them and when it isn't time yet and how to tell the difference.

A few of them are really eye opening. At end of life things like feeding tubes and even intravenous feeding are actually painful and not at all helpful for the patient. I didn't realize that. But now that I know it has made explaining why we won't be doing any of that unless the Hospice doctor suggests it was a lot easier all around. And note, Hospice doctor, not the regular doctors. Their focus is different. They specialize in end of life.