Recently my husband was diagnosed with moderate/severe Alzheimer's. Is he suffering or is it just me and our grown kids?

My opinion, your husband and everyone who loves him. This whole journey is a learning experience. What works tiday may not work tomorrow. If you are able to get some help with the caregiving I strongly suggest that you do that. Don't stress about the future, take one day at a time.

Bless your heart.
What I know today vs. what I didn't know 3 years ago could fill a warehouse. There ought to be classes.

You learn by doing and using this site to search for topics and ask questions. There is a very strong support community on this site, full of folks who have seen and been through utterly everything.

Some things I learned -

1. Make sure you get your rest. Your inclination will be to stay up all night and do everything by yourself. This will put you in the nursing home faster than your husband. You will need night help, maybe not today, but it will happen, so make a plan and decide if you can get in-home help.

2. Plan ahead for the next stage of need. Educate yourself, educate yourself, educate yourself. Learn how to recognize Sundowning. Learn about the next "stage" and its signal behaviors so you don't miss them.

3. Get your finances in order NOW while you still can. Talk to an elder law specialist ASAP to understand what legal documents you need now so you can take action later and how to protect your assets and property.

4. Keep a journal. Even if it's really short. Write down what happened today and if there was anything that happened that got your attention. This becomes your record book to use with the doctor, so you can see changes that happen gradually over time. A daily reflection is good for your mental health and there is something really therapeutic about writing it down. You are going to need an outlet for your frustration with the disease, your husband, family who don't understand, and friends who evaporate like mist.

Please come back to the site often. It's a great place to vent, find answers, and resources.

That is a great response sandwich42plus, very thorough. One of the hardest things to deal with is, as you say, the friends who evaporate like mist. That has been hurtful and unexpected and makes the caregiving task very lonely.

I have to agree--go see an eldercare attorney and get your finances in order NOW. You may have to get him on Medicaid later for nursing home placement. Maybe not..but you never know.

This is just the beginning of a long journey. It is part of your life experience. Download the 3 free helpful guides provided for by this web site. Treasure the good days but do not be frustrated when things are bad. Find ways to relax. Watch out for your own health. Make sure your caregiving role does not drag you into depression. Do not look at it as who is suffering. Just remember that people with Alzheimers lives in the present and rarely thinks or worries about their future. They tend to forget unpleasant things moments after it happens. As a caregiver, do not dwell on things that the patients do wrong. Treasure the moments you spend with the patients. Do not get carry away with all the things they do wrong. Join a support group to find out how others handle their caregiving duties.
The most important thing is to look after your own health first. Make sure you do not get depressed because of your husband.

What you have is great advice spoken from people who have lived the life of a caregiver of someone with Alzhiemers. The only additional advice I would give is to consider a male companion for him for you to have time away as much as you can afford. This could be for your hair appts, lunch with friends or whatever is normal for you to do. This will help with your sanity. This caregiver for him could be family if you have any that would care to be with him or could be from an agency etc. Know that what he would need now in a caregiver will change as he changes. The big message here is to get away and have your own head space.

All excellent advice especially sandwich42plus.
The thing I had the most trouble with was getting my family to understand YOU CAN'T CHANGE THEIR MIND!!!
Their brain doesn't process things correctly any more. In their mind, what they think, is as real as what you know to be true.

When Glen Campbell was told that he had Alzheimer's he replied:
"I don't feel it anywhere," "Where do I - what do I do? Like, what?"

caregivers learn to speak dementia as a second language

people with dementia continue to have the need to participate in activities...to do things...just in a manner that is appropriately simplified and supported by caregivers. quoted from MindStart

tinyurl/abtwfrn

Buy a copy ASAP: ""Kisses for Elizabeth"": A Common Sense ApproachTo Alzheimer's and Dementia Care

confabulations are a major annoyance — when friends, family, and the medical community take everything our loved ones say at face value, no matter how false we know their statements to be alzcompen/?p=293

Be sure to search for : "Alzheimer's Compendium" and "Caregivers' Newsbasket"
Don't miss browsing the the alz.org web sites

Planning ahead from alz assoc archives
http://www.alzconnected.org/archive.aspx?g=posts&t=10988

LuvRLabs2, Bless you and your family. Everyone has provided great comments. Oh what a journey! I've learned to live structured from day to day. I think the most difficult part is watching someone you love go through this illness. I think everyday, I just want him back, knowing that will never happen.

Friends have vanished and its very hurtful and I'm taking that personal. My husband's daughter has never lifted a finger to help and whenever she calls it is to put negative thoughts in his head. It's very difficult. The best book I have read is Surviving Caregiving by Dr. Woodson. There is a chapter I read over and over to remind myself that it isn't me. Read everything you can and reach out to the available resources, there are many. Screen everyone very carefully and ASK FOR HELP. Geez, it's hard but I'm finally learning, I won't live without it.
Bless you

Two things come to mind, one for you and one for him.

For you: make sure you get away from the house from time to time. Send your husband to an adult day care. Take the rest of the day off. Hire a companion for the day (or once or twice a week).

For him: Make sure you know how to speak to a person with dementia. Spend some time at that day care you are sending your husband to. Learn about how to make him feel better when he asks you if you've seen his parents. Or what to say to him when he packs his bags and says he's going "home." How to get him back into the house when he walks out the front door in the middle of the night in the middle of the winter with only his pajamas on.... you will need those skills... simple skills, but very important.

Dear LuvRLabs2
I have rarely seen a question on this site answered so well and so thoroughtly, but your question has not been answered specifically.
You both are suffering, in the beginning my husband suffered more than I . He hated losing his memory for things. As his disease progresses, my suffering increased as he lost me in the crowd. As he no longer saw me as his best friend, I became very lonely. I suffer each day from his absence--although he is still alive and physically healthy. HOWEVER, if you listen carefully to the advice already provided, the difference is, You will survive to resume your independent life. It may take a long time.
My husband has been diagnosed for 10 years and I am just beginning to invest my energies in projects and friends outside of my caregiving role.

Loved Sandwich 24's feedback. Great advice. Don't think a psychologist could have given more thorough and truthful info. What a wonderful website. Just remember, every circumstances being a caregiver are different. Every day, every minute, every situation is at times funny, and then heartbreaking. Learn to laugh, learn to see a positive ray in daily situations. And, if you are religious, pray, pray your heart out and ask for grace and patience. It truly helps. Everything changes---yes, once good friends disappear, family members (if one has family members) are distant and void of caring. Learn to be strong and seek advice and help. Call your church, call the Alzheimer's Organization or simply email this website. The main awareness that took 9 years as a caregiver was to realize nothing will change unless the caregiver is motivated and strong enough to make changes. You can worry, cry, scream, beg the doctor to help, call family services, but it is YOU that needs to 'steer the ship.' Because YOU are the decision maker...no one else. And please, do not be like so many caregivers. They are beyond exhausted, some I've talked to have gotten to the point they do not care if they live any longer. To answer your question directly, YES, you are suffering, the patient is suffering, and loved ones are suffering. You have been diagnosed with second-hand Alzheimer's. And you will have Alzheimer's and pay the price as much, if not more, than your husband. Good luck. You will be in my prayers. Hope you keep us posted on your situation. We really do care.

Thank you for all of your beautiful answers. I can't believe this site and will keep it nearby daily. You can tell I am not computer savvy, and this is probably not the place to reply. Another thing, I want these repli s closely for me to read and re-read, hope I don't lose them.

I watched a video by Teepa Snow and hope to find them all. Wow, what help is there for us, I am floored. I ordered the book "the 36-hour day" and started to read the 500 pages yesterday. There is so much out there, I need to gather it all as I travel this journey. Sorry for my reply in this answer column, but a thank you again from the bottom of my heart. I embrace all of you as my "travel companions" and just a short time ago I didn't know you existed!

You did things right, Luv. You have received such excellent advice that I don't think I could add anything more. I liked very much what putthatknifeaway wrote, because I have found it is so true. My mother has dementia. Initially it was hardest on her as she struggled to keep control and some normality in her life. But as she drifted away, it became harder on me trying to reach across a void to her. I think the suffering is equal on both sides, but we become more stressed by it as time goes on. Do you have family that will be there with you to help?

I found my answer in your question about your grown kids also suffering. Family is priceless when they stay close going through this.

I had taken the advice to keep a journal and then my writings became a book of my experiences and others who are or were caregivers to folks with dementia who attended support groups I was a part of or lead. Keep the 36 Hour Day nearby and use it as a reference guide as your husband's disease progresses. I used it much as I used Dr. Spock's book when raisng my children.Many caregivers read my book Put That Knife Away and feel less alone with their situation- A kind of support group between 2 covers.

LuvRLabs2, forgot one thing. I recently went through an online Caregiver course sponsored by Rush Hospital in Chicago. I was able to get some great pointers from the class. Check your local hospital's Alzheimer org. they probably offer some great things including support groups.

I cared for my father with vascular dementia and even though most of his friends did not come to see him I will tell you that a few people never abandoned him. That was his sister, his family, and a couple of friends from his social groups. It may feel like every one is gone, but I am sure that there are people he knows that would still be his friend. I know that Senior Corp or similar in home agency that does companionship would make a new friendship. Keep up your friendships and be open to making new friendships because they are there. Also, the ALz Assoc, in Virginia Beach is offering a program for spouses called EASE. Check into the Alz Associ. where you live to see what classes they are offering for spouses and on the website their is a lot of good training tools. Most importantly love your spouse and find ways to bring him joy. I am helping my mom who has early dementia and she and I found that during her Therapy because her shoulder is injured that we make it fun and we sing uplifting songs like the hokie pokie and on eagle's wings. She and I do arm exercises together with these songs. Find a way to have fun together every day.

I am wondering about POA. I took my mom to the Dr. because she has his right shoulder injury that she received since last year and she still experiences pain. She has gotten the injection earlier this year but the pain comes and goes here in June. Last Friday, I took her to get an MRI last Friday and she goes back this Wednesday. My concern is I am trying to get the house back into order and clean up to make things neat and organized and she is limited with this shoulder injury to do it herself, but she won't throw anything away. We are getting roaches on the front porch and I am finding rotten stuff in the kitchen. The house is just a wreck. I am wondering what to do. Her memory is still in tact, but I am noticing her difficulties with her remembering things is becoming increasingly difficult. Also, I tried to hire outside help because she is dependent on me for her driving her to her appointments. She refuses to take it. I am becoming very depressed because I feel trapped. I want to work outside the home but I cannot leave her by herself. I do not have POA because we found out that she has already taken two competency test and her Neuropsychologist said that it would cost her 1500 to 1700 out of pocket to take a test to meet the lawyers request to see if my mom can handle her finances, healthcare decisions-, and to execute a will and trust. My mom said no. Our lawyer is willing to meet with us both to determine my mother's expectations with how she wants me to handle her finances. Truth be told she needs to spend money on extra help for her in the home and she won't do that . i feel she needs to be in Assisted living where her needs can be met more adequately but she holds that decision. As a daughter what recourse do I have at this point.

A must read "Understanding the experience of Dementia" free read by Jennifer Ghent-Fuller. I first saw it on Alzheimer web. My husband 84 Alz/dementia since 07 puts 100 piece puzzles together when awake & I put them away each morn & he doesn't remember he did them & will do them again & loves it. He doesn't read or watch TV. Rearranges things which I leave them then in morn put back where they belong. He doesn't remember. Keep calm gives calmer spouse & life. Give extra time for everything he is involved with, dressing, brushing teeth, showering, eating etc. If you can afford get someone to come in for even an hr. I felt free the first time. This site is the best..Read some you think don't apply to you as they may later.

Read "Creating Moments of Joy" by Jolene Brackey. It gives so much help with how to respond - like when they ask, "Where's mom?" They ask because they are in a memory time when she was alive, so an answer of "she is resting" (not dead) gives them satisfaction. Leaving those in a care center, use a phrase that does not mention "going home" which just makes them want to go with. There is so much helpful advice in this book on what to do in many different situations.

I wouldn't say your husband is suffering but when he is having his good days he will feel frustrated and sad because he is aware of his memory loss. On the brighter side of things when he is deep in his dementia he will not be. Small words of advise try not to sweat the small mistakes he makes.

Boy, everyone of these answers what was I was going to say. If I hadn't gone through this with my grandmother I would have been lost going through it with my mom. Heck still am. She's well on her 12 year with this disease and is failing. Doesn't talk, wheelchair bound but still knows me, I hope. It's been hard to watch and go through and as I was taught early on it is a true Journey not a race. Don't be scared, just get your ducks in a row and as mentioned before be educated. Some weeks will be good, others....eh. Learn to pick your battles. Not everything can be fixed or go the way you want it to and you just have to roll with it. Don't correct, you won't win. Their brains just don't function anymore and personalities change. A sweet person for all their lives might turn angry and hostile and vice versa. Sometimes they won't change just depends on chemistry in the brain. As far as friends go, they are not disappearing to be rude or hurtful. If they have never gone through things like this it is scary to see someone they once knew not understand a simple question or be able to communicate anymore. They just don't get it. Ask for their help though so they can be educated. After all, it could happen to them someday with a loved one and it could help them seeing and learning what you are going through. DON'T give up your life or your hobbies. It seem like you don't have time anymore but that's why you need Adult daycare, day nurse, sitter, etc. I didn't do this and I really believe it has taken my health which I'm trying to get back. My mom is in a facility and I still take care of my dad. He lives in a retirement facility on his own but there are still plenty of drs. appts. and financial issues to take care of. Again, like others have said, this site is wonderful to vent, ask questions and learn new things. Wish I had found it a lot sooner. Good Luck and God Bless.

I worked in a Alzheimer's unit for seven years I truly loved it but my heart did go out to the caregivers who had no support prior to reaching out to a facility everyone has given excellent advice plz get some rest and me time! God Bless you

What a great question. I am sure I speak for many on here that being tired is an ongoing thing as a caregiver. This question is SO great that I think I want to dwell on the question, read some of the answers and be back at ya.

First of all B1 and Aricept will not do a d*mn thing for dementia. It is a terminal illness and his behaviors will change all the time. The best you can do is learn as much as you can about this disease, and if you feel you cannot handle caregiving, then place him. Not everyone can handle this disease, but do not think I will give you any sympathy because you are being inconvenienced. Having lost one's memory has got to be the most devastating illness, and your husband is suffering in silence, but he cannot remember much, and pretty soon you will be a distant memory. I've been dealing with my husband's illness for eleven years and will continue as long as he has a breath. No one said life was easy...

Yes you both are suffering. It has been May 2010 since my husband was doctor said it was dementia. My husband keep working I- kept things going till Nov 2010 his employer let him go. Shock into reality! Life changed this man I knew has become depended on me his wife. My husband quite independent man reading Mr. Fit-it conversational person All I miss about him. The meds help and even now he still tries but for me yes it is really lonely so I hold on the the moments when he has GOOD DAYS!! and you focused on that and the memories I made a memories room for him and myself I put our pictures on the bedroom door( favorite music) anything that will made it easy on him and me! He is my Love my husband until the last day I will be with him. You will get all the emotions during the day and night tears all of it but be strong and take care of yourself.

I feel for you, it's a tough road to travel. I still haven't learned how to handle the parent issue. My husband always wants to see his Mother, who had been dead for more than 30 yrs. Also, he does that" I want to go home" almost every day.
I have recently tried saying "Alright, go ahead, but, I'll miss you" He then will go to the door, turn around and say "I can't do that" Everything is so hard, but, I can't put him in a home, so...................

Please go to the website of your local alzhimers assoc. Look for a support group in your area and go. It is so helpful to sit and talk with people going through the same thing as you. You learn right away you are not alone. Also the alzhimers assoc has counselor avaliable 24/7 when something happens and you just need to talk to someone that understands. I know the morning my dad did not know who i was i was crushed and needed someone. They listen to me as i cried and then talked about other things I going through as a caregiver. There are free resources available, please use them because you need to take care of your emotional health just as much as your physical health.

My boyfriend and I are both 60 years old and are disabled with back problems and fibromyalgia. He got hurt in the Navy during the Vietnam War and I when working as a nurse. He was able to work until 8 years ago and I worked until 5 years ago. We moved to FL almost 2 years ago hoping we would get some relief from the chronic pain from the Northeast winters. I am also POA for my 88 year old godmother, who has been like my mother my whole life. She was never married and has very little to do with her own family. There was no way when we decided to move that I was going to leave her basically by herself in PA, so we now all live together and I have a private duty home nurse come in each day to bathe, dress her and do the things I cannot physically do. She was just diagnosed with early dementia not long ago, but I can see already how she is changing. Thank God, the nurse can stay with her a few days a week for the morning and afternoon, so we can get out and just do the things we enjoy to do together, and that is if we both feel good enough to do anything. Sometimes she will just stay with her and make her lunch and sit with her if we are not feeling well and need to rest. I thank God everyday we have this person, and my godmother can afford this. I cannot stand the thought of having to put her into a nursing home, as I know how those places are, but I also cannot allow our own health to get worse. I will continue to have the nurse and possibly in the future another nurse to come in for the nights if needed, but I can say without a doubt, this is the hardest thing I have ever had to do! I took care of my father for five years before he passed away in 2006, but his mind was sharp all the way to the end. Taking care of someone with dementia/alzheimers is very demanding and grueling! Try to establish from the beginning an understanding and educate friends and family of not only what the person with the disease will need, but the support you will need also! Know that you cannot possibly do this all on your own and do not feel guilty to ask for help or hire someone (if you can afford), to come in to help you!! Use this website as a sound board not only to get information and support, but to vent your frustrations and feelings, otherwise there will be days that you will feel so overwhelmed and all you want to do is give up! Everyday, I look at my mom, and I think back on all our memories together and how she was always there for me, standing strong and giving me unconditional love! Those memories are what keeps me strong and keeps me going! To all caregivers who deal everyday with this dreaded disease, I send my healing thoughts and prayers!